Patient Advocacy - Giving Voice to the Patient

Patient Advocacy

Giving Voice to Patients

Dr Aniruddha Malpani

All rights reserved.

Patient Advocacy - Giving Voice to Patients
Copyright - Dr Aniruddha Malpani
Aniruddha.malpani@gmail.com

Price: Rs 300

HELP - Health Education Library for People
Ashish
Tardeo
Bombay 400 034
India

www.healthlibrary.com

Table Of Contents

Foreword..............................................................................................................................................7
Introduction: The Role of a Patient Advocate........................................................................... 11
How This Book is Organised........................................................................................................ 17

SECTION 1 UNDERSTANDING THE RIGHTS OF PATIENTS...................................... 19
.
1. What Rights Do Patients Have ?.............................................................................................. 21
2. The Right to be treated with Respect and Dignity.............................................................. 25
3. Right to Full Disclosure and Information............................................................................... 27
4. Right to Simplified Information................................................................................................ 31
5. Right to Privacy and Confidentiality....................................................................................... 33
6. he Right to Informed Consent
T
in a Clinical Trial.................................................................................................................35

SECTION 2 PATIENT ADVOCATE’S RESPONSIBILITES TOWARDS
CRITICALLY ILL PATIENTS ............................................................................. 39
7. Caring for the Seriously-ill........................................................................................................ 41
8. The Problem of Defining Death............................................................................................... 47
9. How to Deliver Bad News....................................................................................................... 51
10. Caring for the Bereaved.......................................................................................................... 57

SECTION 3 WHEN YOU ARE YOUR OWN PATIENT-ADVOCATE............................. 61
11. How I Became a Patient Advocate........................................................................................ 63
12. How to be Your Own Advocate............................................................................................ 67
13. Researching and Becoming an Expert.................................................................................. 71

SECTION 4 THE ROLE OF PATIENT-ADVOCATES IN HOSPITALS ........................... 75
14. How Advocates Can Build Trust between Patients, Doctors and Hospitals............... 77
15. Family Physicians as Patient Advocates................................................................................ 81
16. The Patient Advocate as Patient Guardian.......................................................................... 85
17. Patient Advocates in Biomedical Research.......................................................................... 91
18. Improving the Hospital Experience

for a Patient ....................................................................................................................97
19. Meeting the Special Needs of Patients............................................................................... 103
20. Engaging Patients to Improve

Treatment Outcomes.................................................................................................. 107
21. How Patient Advocates Can Promote Medical Tourism................................................ 111

SECTION 5 IN THE EVENT OF MEDICAL NEGLIGENCE .........................................113
22. Helping the Patient File a ComplaintUsing the Law to Strengthen the Patient’s Voice.............................................................. 115
23. Dealing With Angry Family Members................................................................................. 121
24. Managing Conflict of Interest .............................................................................................. 123

SECTION 6 MEDIATING WITH THIRD PARTIES............................................................127
25. Mediating With Insurance Companies............................................................................... 129
26. Arranging Concierge Services ............................................................................................. 131
27. Facilitating A Second Opinion.............................................................................................. 135
28. Providing Access to Alternative Treatment ...................................................................... 139

SECTION 7 THE PATIENT-ADVOCATE AS A PROFESSIONAL ..................................143
29. Becoming a Professional Patient-Advocate....................................................................... 145
30. Setting Up Shop and Expanding Your Business................................................................. 151

31. How to Market Your Patient Advocacy Business ............................................................ 153

32. Summing Up............................................................................................................................. 157
33. Additional Resources.............................................................................................................. 161

Contributors

Dr. Jaya Bajaj did her undergraduate medical training (MBBS) in India and MD in Family
Medicine from USA.With her experience of practicing medicine in the West and the East, she
strongly believes that “Medicine is more of an art than science”. She believes in empowering and
educating physicians and patients alike and is deeply passionate about healthcare technology
and role of social media in healthcare. She also has a Masters degree in Public Health and
a Management degree from IIM-Bangalore and is founder of HealthRadii (www.healthradii.
com) which is an online platform for thought-leaders and thinkers in healthcare and is an
attempt to initiate dialogue on current issues in Indian healthcare. Connect with her on Twitter:
@HealthRadii
David J. Foster is Senior Director of Solution Innovation of Healthwise (www.healthwise.
org). David’s life focus is to give people the power to improve the world around them through
democratized media. David has applied his entrepreneurial background to help Healthwise
reinvent health education approaches through the use of new forms of media, shared decision
making and integrating patient generated health information into clinical records. He currently
is focused on researching consumer use of social media for health and advance care. David
received a B.A. in Biology from Brown University.
Donald W. Kemper, MPH, is the founder and CEO of the non profit Healthwise. Mr. Kemper
is a passionate advocate for raising the quality of patient engagement. He has co-authored five
medical self-care and health promotion handbooks that have sold more than 35 million copies,
including Information Therapy: Prescribed Information as a Reimbursable Medical Service.
He has presented at numerous conferences, and articles on Mr. Kemper and his work have
appeared in The Wall Street Journal, The LA Times, Health Forum Journal, and other health
industry and consumer publications. Since its founding in 1975, Healthwise has helped people
make better health decisions over a billion times.

v

Dr Aniruddha Malpani is an IVF specialist who passed out from Bombay University,
winning over 20 gold medals during his academic career. He founded runs the world’s
largest free patient education library, HELP, at www.healthlibrary.com. He has authored 5
books – How to Get the Best Medical Care (www.thebestmedicalcare.com); Successful Medical
Practise; Using Information Therapy to Put Patients First; Decoding Medical Gobbledygook; and How
to Have a Baby. His passion is patient empowerment; and he believes that using Information
Technology to deliver Information Therapy to patients can heal a sick healthcare system
(www.puttingpatientsfirst.in). He is an angel investor in Plus91 (www.plus91.in) a company
which provides websites for doctors; and PEAS (www.peasonline.com), India’s market leader
for creating digital media for patient education.
Dr Manju Padmasekar, a summa cum laude PhD in Human Biology from Justus-LiebigUniversity, Giessen, Germany. She is a biomedical researcher who is presently working as
a post-doctoral fellow in the same university. She works in the field of stem cells, with
special focus on using them for treating type I diabetes. Her email is manjupadmasekar@
yahoo.com.
Dhivya Ramasamy, is a Faculty Associate at LAICO, Aravind Eye Care System (www.
aravind.org) Madurai. She anchors the management training programmes at LAICO. She has
been actively involved in consultancy projects to enhance eye care delivery; working with
several eye hospitals in New Delhi, Andhra Pradesh and Mexico. An MBA from Thiagarajar
School of Management, she has been instrumental in developing the Aravind Patient
Feedback System that is a combination of patient feedback surveys, structured patientstaff interaction and feedback provision to the management to facilitate improvement of
the patient services.
Prabhakar Rao A textile graduate from the Bombay University, Prabhakar Rao established
a charitable trust, Jeet Association for Support to Cancer Patients (JASCAP, www.jascap.
org) to help cancer patients. The trust is active in the publication and distribution of
patient information on cancer and in providing financial assistance for their treatment and
counseling. He is assisted in this endeavor by wife Neera, their two daughters Suchita and
Supriya and a small band of employees, besides a larger group of dedicated volunteers.
Radhika Sachdev has nearly 20 years of experience in the media industry. She has
worked with all the big banners such as Times of India, Hindustan Times, Indian Express
and The Pioneer. She has handled news development and editing at various media houses.
She now works as an independent editor, content developer (www.writesolutions.co) and
consultant to a host of domestic and overseas clients. She can be reached at sachdev.
radhika@gmail.com.

Foreword

A

dvocacy is an unfamiliar word in the Indian healthcare sector. For most people, the
word advocate conjures up the image of a lawyer - and for most doctors, an advocate
is the dreaded enemy who files lawsuits for medical negligence against them.

In reality, an advocate is just someone who stands up for you and helps you in claiming your
rights. Parents, for example, have always been advocates for their children. How does this
apply to the healthcare field?
When you fall ill, you are likely to be lost and confused. While your doctor can help provide
you with medical care, patients need a lot more than just prescriptions and pills. They need:
99 Emotional support and hand holding
99 Help with doing research to explore options and verify that the doctor’s advice is
correct
99 A guide who acts as a sounding board
99 Help with filling up forms and claiming reimbursement from the insurance company
99 Help with talking with doctors, co-ordinating care with a team of specialists, getting
a second opinion and navigating a hospital’s labyrinthine maze
VIPs get all this as a matter of right of course, but ordinary patients don’t. In the past, the
role of a patient-advocate was automatically assigned to the elders in the family, who had a
lot of experience. Today, with the breakup of the traditional joint family structure, this role
is best discharged by trained professionals. As healthcare becomes increasingly complex and
expensive, patient advocacy has evolved into a new discipline.While there are few professional
patient advocates, all of us perform this function when we help to take care of someone who
is ill, but because it is such an unfamiliar role, we may not know how to perform it effectively.
As we all know, doctors and hospitals can be intimidating!

7

Patient Advocacy Giving Voice to Patients
When you are ill, you need someone who will talk for you and talk to you - an independent
trusted, wise advisor, who is empathetic and rational enough to help you to take the right
decisions. Patient advocates function as a communication bridge between doctors and patients
and help patients to access quality medical care. A patient advocate will make you feel safe and
well-cared for during your difficult hour because he will go that extra mile to make sure that
you get the best care possible. He provides a ‘’by your side’’ service, in which he shadows you
to ensure you have an ‘’extra set of eyes and ears’’ monitoring your care.
In a perfect world, there should be no need for a patient advocate, since doctors, by the very
nature of their job, are already advocates for their patients. Unfortunately, the need for a
patient advocate arises all too often, because doctors and patients no longer seem to be one
the same page. There are several reasons for this.
First, doctors are extremely pressed for time. When you know that you have a waiting room
full of patients, it’s very difficult to engage in an open-ended conversation with one patient. It’s
much easier to announce the diagnosis, pronounce the treatment and send the patient on his
way, no matter if he is confused or distraught. Doctors just don’t have the luxury of time to
be able to hand-hold their patients anymore, or give them a shoulder to cry on.
Second, doctors love using medical gobbledygook and often forget the impact their words
have on their patients. The doctor might think she has done a good job, when the reality is
that the patient was so distraught by the diagnosis that he could not neither process the
information provided or understand the doctor’s medical jargon.
Finally, many doctors are simply not paying as much attention to their patient as they should.
They order too many tests, don’t look at all the results and don’t listen to what the patient is
telling them. These doctors can become very attentive when they realize that someone else
who is knowledgeable is monitoring a patient’s care.
Patient advocates provide a variety of benefits:
99 Many have medical training and some are doctors. Knowing that another medical
professional is watching over a patient’s care often makes a doctor more careful.
99 Patient advocates can interpret complex medical information for patients. Some
doctors simply can’t or won’t explain things in a way that a patient can understand.
99 Patient advocates can transmit important information back to the physician in a way
that the doctor can understand. Patients, often because they are upset, have trouble
communicating their needs or getting to the point. Since patient advocates have

8

Foreword
medical knowledge, they can sift out irrelevant information and quickly provide the
doctor with an effective summary.
99 Patient advocates can brainstorm with physicians in a way that the patient cannot,
so that they can forge a partnership which helps the patient to get the best possible
medical care.
This book explains what patient advocacy is, what patient advocates do and how they do it.
Anyone who is ill or wants to help a person who is ill will find this book a useful resource.We
all need a helping hand when we are sick.

9

Introduction:
The Role of a Patient Advocate

The “go to person” who can guide you through the healthcare maze
Patient advocates act as guardians of patient’s rights :
99 With their inside knowledge of how a healthcare
system works (or does not work)
99 Their access to leading doctors
99 Their ability to cut through hospital red-tape and
make sense of medical jargon
99 Their skill in sifting through medical research and
translating this information into simple language
99 Their compassionate support; and
99 Their capability in talking confidently to doctors
without getting bullied or cowed down
Patient advocates are able to provide an invaluable service
to a patient at the most crucial time of his life. Depending
on who assumes the role of a patient advocate, patientadvocates can be classified as:

Your Friend in Need
A patient advocate is not
an adversarial position.
It doesn’t mean rushing
out and getting a second
opinion on every routine
matter, or conducting
your own research and
confronting a healthcare
professional with your
findings. It merely implies
acting as a wise gobetween between the
healthcare provider and the
patient.

Self-advocates: If the patient possesses adequate medical knowledge and if his health permits,
he can function as his own advocate.
Informal advocates: When a family member- typically a spouse, sibling, parent or friend takes on the role of a medical advisor.
Professional advocates: A social worker, nurse or another health professional employed
either by the hospital by the family to act on behalf of the patient.
11

When you (or a family member) get admitted into a hospital, please inquire if the hospital has
a patient advocate on board and what services he can provide. If not, you should consider
hiring one. Just as a lawyer helps you with all matters legal and brings your case to trial before
a magistrate, a patient-advocate can highlight your concerns to a doctor when you are feeling
unwell, frightened and may not be able to understand what your doctor is saying, simply
because he is busy and rushed for time.
Good Communication
If you are privileged to be selected as a patient’s advocate,
Helps
understand that you are taking on a big responsibility
that may require you to:
“If we can establish more
communication among
Make yourself available 24/7 - you must be willing to
physicians, nurses, and
make the time to do the job right.
administrators, then I believe
the quality of health care will
Develop patience and understanding - know that
improve by leaps and bounds.”
there will be unending chores and that you may be
called on to run errands for the patient at all odd-hours
Peter Cornell
of day and night. You will need patience and maturity
to deal with all kind of anticipated and unanticipated
medical exigencies.
Become an expert in the shortest possible span - you may need to sift through pages
and pages of medical documents; organise and summarise these ; and try to make sense of
medical journal articles written in the densest prose. In addition, you may need to read up on
the internet; subscribe to medical databases; consult with medical experts; refer to library
resources and discuss issues with doctors, specialists,
The Skills of an Advocate
and other medical staff; and liaise with family members.
This can be a challenging exercise, and you need to be
“If you look at it from the
systematic and well-organised if you want to be effective
business case, patient advocates
in this role.
need to have advanced training
in conflict resolution and have
What services do patient advocates offer?
a firm understanding of the
They offer a wide variety of services, including providing
medical world to help families
medical assistance, insurance assistance, home health
through critical times. It’s a
assistance, elder and geriatric assistance and legal help.
complex role that requires a
In order to discharge these duties they need the ability
special skill set.”
to:
Maack-Rangel

12

Introduction: The Role of a Patient Advocate
Dispel myths and provide patients with curated, trustworthy information, so that they
understand their diseases and treatment options and don’t get misled by quacks.
Cut the red-tape because they understand the hospital hierarchy. With the assistance of
a patient-advocate you can get prompt and efficient care without getting bogged down by
bureaucratic hassles.
Build relationships: A patient-advocate not just acts as a friend, philosopher and guide to
the patient, he is also able to communicate intelligently with the doctor, who in turn treats him
as a trusted, reliable partner he can collaborate with, so the patient gets better sooner. Since
a patient-advocate is a vital communication bridge between the two, the doctor must see him
as an ally, rather than as a meddlesome adversary. The better the relationship between the
two, the easier it is for them to function effectively.
In India, the word advocate is synonymous with a lawyer and therefore often carries a negative
connotation. But don’t forget that an advocate is a
professional who is trusted to fight and stand up for
Steve Jobs and Patienthis client’s rights. As a patient, it’s always useful to
Advocacy – or the Lack of it!
have someone who is vigilant by your bedside to
make sure that an overworked nurse is giving you
The following Saturday afternoon,
the right medicines, at the right time. It’s useful to
Jobs allowed his wife to convene a
have a well-informed professional scan the web and
meeting of the doctors. He realised
find out more about your specific condition. And
that he was facing the type of
it’s important to have someone take notes during
problem that he never permitted at
a doctor’s visit and ask the right questions on your
Apple. His treatment was fragmented
behalf.
rather than integrated. Each of the
My friend’s mother’s case offers an instructive
example. Admitted to the hospital for a laparoscopic
removal of the gall bladder, she was diagnosed with
septicemia. A few days later, when she found that
the nurse attending to her was ignoring her, she
urgently summoned her daughter and asked her to
fetch a paper and pen. In a highly agitated state, the
patient began scribbling notes, saying she was losing
sensation in her right hand. The concerned daughter
alerted the doctor on duty and it was discovered
that the patient was actually having a brain stroke.
Her daughter acted as an advocate, and was able to
prevent further brain damage.
13

myriad maladies was being treated by
different specialists – oncologists, pain
specialists, nutritionists, hepatologists,
and hematologists – but they were
not being coordinated in a cohesive
approach… “One of the big issues in
the health care industry is the lack
of caseworkers or advocates that
are the quarterback of each team,”
[Laurene] Powell [Jobs’ wife] said.
Patient Advocacy on the Cusp of the
Tipping Point by Trisha Torrey


A patient-advocate wears multiple hats
A patient-advocate is a crucial component in the healthcare delivery chain. Her presence and
involvement can ensure the best possible treatment outcome for the patient. Among some of
the tasks that she needs to complete are:
99 Network with doctors; take
appointments, coordinate diagnostic
tests, and collect reports

Institutional Support

99 Get specialists to talk to each other
around the hospital bed
99 Arrange for blood products
99 Buy medicines
99 Fill in various medical forms and
complete the insurance paperwork.
The good news is that being an effective patient
advocate does not require specialised medical
training - just basic communication skills, a
problem-solving mindset, the ability to empathise
with the patient and the family and the willingness
to shoulder some extra responsibility. When
you find yourself playing this role for family and
friends with chronic conditions, help them look
for a physician (usually a specialist) who has a
strong track record in treating patients with
their condition. If the condition has not yet been
diagnosed, help them find an empathetic primary
care physician who can provide individualized
attention.

The Professional Patient Advocate
Institute in the UK (www.
patientadvocatetraining.com) offers
high-level, in-depth training to those
currently practicing as advocates
and provides an entry point for
those who desire to transition to an
emerging practice, or those who want
re-enter the field from retirement.
The Institute serves independent
patient advocates, in-hospital
patient advocates, employer groups
and others interested in ensuring
effective, consumer-driven healthcare.
The Institute offers professionals
who have an understanding of the
healthcare system the opportunity to
improve their skill sets so they can
truly advocate for the consumer and
their families to improve the patient
experience and ultimately contain
healthcare costs.

One aspect that you must remember about a doctor-patient relationship is a doctor makes a
recommendation, but it’s the patient who has to make the final decisions. As an advocate, you
can help him make the right decision.

Make your concerns and intentions known
As a patient advocate, your first responsibility is to make sure that all the key people know
your concerns related to the patient’s condition and treatment plan. The medical team must

14

Introduction: The Role of a Patient Advocate
understand that you are concerned about the patient’s health, welfare, progress, and rights.
You are NOT trying to interfere with their work - your goal is simply to help them carry out
their tasks in a professional, responsible manner, consistent with the patient’s best interests
and wishes.
Good doctors appreciate the assistance and insight which a skilled patient-advocate can
bring to the table. The nursing staff should understand that it’s the advocate’s job to monitor
and oversee a patient’s care, to ensure that the patient is getting the care that the doctor
has prescribed. Towards this end, the advocate must share his contact information with key
persons and contact them proactively on a regular basis, rather than waiting for them to
contact him in the event of an emergency. He must monitor the patient’s progress regularly;
remain positive, co-operative, caring and knowledgeable. He must be firm, but not demanding;
active, but not antagonistic; concerned, but not confrontational.
In their article, “The Voice of Florence Nightingale on Advocacy,” Louise Selanders and Patrick
Crane point out that Nightingale was an excellent patient-advocate. She established nursing
as a profession and fought concertedly for the rights of diverse set of patients. She believed
in equality of care, regardless of religion or faith, and was a crusader for basic human rights.

If you are a patient
Your advocate can be a spouse, a child, a close friend, a parent or a concerned relative. It is
best if your advocate is familiar with your medical condition and your symptoms. Ideally, he
should accompany you every time you see your doctor. A doctor is likely to give you more
time if you have a representative with you. Interestingly, research shows that if you are a
woman, choosing a male advocate will help you wield more clout with the healthcare system.

Quiz Time: Would You Make a Good Patient-Advocate?
Instructions: Please choose your response from the options provided with each question:
1.The role of patient-advocate implies:
a. Speaking up for the patient where needed
b. Making crucial decisions for the patient
c. Excluding the family from the decision-making process
d. Not discussing the patient’s concerns with other healthcare workers

15

2. he legislation that finally recognised patients as consumers of healthcare
T
services was:
a. Monopolies and Restrictive Trade Practices Act, 1969
b. The Consumer Protection Act, 1986
c. The Insurance Act, 1938
d. None of the Above
3. Patient advocacy can result in which of the following consequences:
a. Frustration with an inefficient and baffling healthcare system
b. Punishment for the guilty doctors and nursing staff
c. Lowering of the dignity of the patient
d. Better quality care for the patient
4. Patient advocacy is meant to improve:
a. Patient safety
b. A nurse’s salary
c. A nurse’s workload
d. Hospital’s income
5.The key skill needed in a patient-advocate is:
a. Effective communication
b. Willingness to take risk
c. Focus on the patient
d. All of the above
Let’s check your answers:
a.
b.
d
a.
d

16

How This Book is Organised

T

his book has seven sections, each covering an important aspect of patient advocacy.
Starting with a brief introduction to this young profession, we take the discussion
forward to Section 1 that explains what rights patients have. The entire advocacy
movement is focused on the protection of the rights of a consumer of healthcare services.
Section 2 talks about the advocate’s responsibilities in taking care of a critically-ill patient,
delivering bad news and taking care of the bereaved family. Section 3 is about self-advocacy
and how to become an expert in this area. Section 4 is about an advocate’s role in hospital, and
how he can contribute to improving a patient’s in-hospital experiences and strengthening the
hospital brand. Section 5 deals with crisis-management in the event of a medical negligence –
how to file a complaint against a doctor and the hospital, how to navigate the litigation process,
how to deal with angry family members and how to manage conflict of interest between
the various stakeholders in the healthcare system. Section 6 is about an advocate’s role in
mediating with third parties, such as insurance companies, concierge services and alternative
care providers. The final part is Section 7 that deals with how a patient-advocate can become
a service provider; the training needed, and how to set-up your independent practice. Finally,
the Resources section has forms and documents that an advocate may find useful.
Your feedback and comments for improvement of the subsequent editions of this book are
welcome. Please send your comments to - aniruddha.malpani@gmail.com

17

SECTION 1

UNDERSTANDING
THE RIGHTS OF
PATIENTS

1. What Rights Do Patients Have?

Under the Indian healthcare system, a patient enjoys several rights.
It’s the advocate’s responsibility to understand them all and tailor their
services accordingly

T

he Supreme Court of India set aside a writ
filed by the Indian Medical Association
(IMA) in 1995 and decreed that the
medical profession is a “service” that should
be covered under The Consumer Protection
Act, 1986. This implied that patients are to be
considered as consumers of healthcare services.
A lot of water has flown down the Ganga since
then. Although malpractice still happens, thanks
to the fact that medical services are now
covered under The Consumer Protection Act,
1986, there is evidence that patients’ rights are
better protected these days.

A landmark judgment

An advocate’s checklist for
processing a Patient’s Complaint
about medical services
ff Name and Address of the
complainant in full.
ff Name and Address of the doctor/
surgeon/hospital/nursing home,
pharmaceutical company etc.
ff What is the primary cause of the
complaint?
ff Particulars of the complaint in detail,
along with supporting documents.
Spell this out in chronological order

ff Relief prayed for – for example,
In the famous V. Kishan Rao Vs. Nikhil Super
replacement of malfunctioning
Specialty Hospital and another, dated March
device/removal of defect /
8, 2010, the Supreme Court did not even
compensation for expenses incurred
ask for a medical expert’s opinion, when it
physical/mental suffering, if any.
became clear that the patient suffering from
intermittent fever and chills was wrongly ff Ensure that the patient has a copy of
all the documents with him.
treated for typhoid instead of malaria for four
days, ultimately resulting in her death.The apex
court upheld the decision of the District Forum in awarding compensation to the victim’s
family, when investigation by another hospital to which the patient was shifted in a very critical
condition on day 5 revealed that the doctor had overlooked the fact that the Widal Test for
typhoid was negative, whereas the test for malaria parasite was positive in her case. This was
21

sufficient evidence for the District Forum to conclude that it was a case of wrong diagnosis
and treatment. Throughout this trial, the deceased’s husband (the petitioner) was guided by
several patient-advocates, who didn’t necessarily have lawyer’s degrees.

A huge leap for patients
In November 2012, a renowned cancer surgeon
was asked to deposit a fine of Rs 50,000 with
the metropolitan magistrate’s court in a case
of “medical negligence.” This case makes for
interesting reading, because it highlights the
fact that the lack of a good ‘bedside manner’ in
the doctor was perceived as a personal snub
by the patient’s husband, and this slight caused
him to pursue the matter doggedly through the
labyrinthine Indian judicial system for many years.
Ironically, in this case, the deceased was not even
officially registered as the surgeon’s patient. Yet
her husband hauled the surgeon to court and
has been ‘patiently’ fighting this battle for over
two decades, simply because he is upset that
the surgeon allegedly did not attend to his wife
in the operation theatre (where he was present
as a bystander) and did not bother to meet the
family after the surgery. Throughout the course
of his fight, the patient’s husband has steadfastly
maintained: “Had the doctor apologized or even
shown some remorse, I would have forgiven him.”

What is an Advocate’s Role in
the Healthcare Delivery System?
ff Be an active partner in creating
the patient’s treatment plan.
ff Ask questions.
ff Keep appointments.
ff Be respectful towards other
people.
ff Follow the hospital’s rules.
ff Ensure that the patient follows
the doctor’s instructions.
ff Share information with the
patient and his family
ff Record changes (improvements
or deterioration) in the patient’s
condition and keep the doctor
and his family well-informed about
these changes.
(This is by no means an exhaustive list)

Even though this may come across as an extreme
example of a patient’s expectations from a doctor, the fact cannot be denied that a doctor’s job
is ultra-sensitive and as health care providers, the buck stops with them. Further, as with the
delivery of any service, doctors are accountable for deficient deliveries, especially since they
are dealing with human life, where decisions once made are often irreversible.The demand for
efficient and error-free service is therefore legally and morally justified in their case, especially
as surgeons these days command a hefty premium for the services they render.
The low level of health literacy in this country tilts the balance unfairly in favor of doctors,
who are quite aware of their patient’s limited means and inadequate understanding of health
issues. Even the well-educated and the well-heeled are vulnerable, and withholding crucial
22

1. What Rights Do Patients Have?
information is a common strategy that the medical fraternity deploys to prevent a patient
from seeking a second or third opinion from another doctor. Often the patient and her family
place blind faith in one doctor, only to have their hopes dashed.
While busy doctors lament that they do not have enough time to look into individual
complaints, patients are unhappy over how long they have to wait to see a doctor - and even
when they do manage to get their chance, they are often very dissatisfied about the quality
of the doctor’s communication, most of which goes over their head because it’s replete with
medical jargon.
The Consumer Protection Act 1986
has undoubtedly made it easier for
aggrieved patients to seek redressal and
sue for compensation but the process
is time-consuming and given the huge
backlog of cases in consumer courts,
the litigation process is tedious, timeconsuming, costly and confusing for lay
consumers. Lately, while courts have
begun to award handsome damages
to the victim, as in the much-cited
2009 case of a computer professional,
Prashant S Dhananka who found
himself paralysed waist-down after
a surgeon ‘accidentally’ damaged his
spinal cord during a surgery performed
for removal of a chest tumor, and the
apex court awarded him Rs 1 crore
in damages - such cases are still few
and far between. The onus of proving
medical negligence largely rests with
the patients’ family and that’s where
patient advocacy becomes important
for receiving safe health care.

Medical negligence, defined

The Role of Consumer Courts
Complaints against doctors can be filed in the
consumer courts. The complaint should be
written on a simple paper, giving all the details
and the compensation demanded. These courts
can only give compensation.They cannot penalise
the erring doctor.
Following are the monetary limits of compensation
that can be granted by the consumer courts in
India:
District Consumer Court: Up to Rs 20 lakh
State Commission: Rs 20 Lakhs to Rs 1 Crore
National Commission: Above Rs 1 crore
All complaints against doctors and hospitals
should have an expert medical opinion from
another doctor, stating that the complaint is
prima facie true and needs further probing.. This
can be very hard for patients to get, because
doctors are understandably reluctant to criticise
a fellow professional.

In an oft-cited judgment in Bolam v. Friern Hospital Management Committee (1957) 2 All ER
118, Mc. Nair, L.J. observed: “I must explain what in law we mean by ‘negligence’. In cases that
do not require any special skill, negligence in law means - some failure to do some act which a

23

reasonable man in the circumstances would do, or the doing of some act which a reasonable
man in the circumstances would not do; and if that failure or the doing of that act results in
injury, then there is a cause of action.” This in a nutshell is the parameter for defining deficient
medical service.

The apex court’s definition of patients’ rights
According to the Consumer Guidance Society of India, a patient under the Consumer
Protection Act, 1986 has the right to be told about his illness and to have his medical records
explained. In addition:
99 Patients should be explained what treatments and medicines are being prescribed
to them. They should be made aware of the risks and side effects, if any. They have
the right to ask questions and clarify their doubts about the treatment.
99 Patients have the right to know a doctor’s qualifications.
99 Patients have the right to be handled with consideration and due regard for their
modesty when being physically examined by the doctor.
99 Patients have the right to maintain confidentiality regarding their illness and can
expect the same from the doctors.
99 Patients have the right to a second opinion if they are doubtful about the medicines
or treatment suggested.
99 Patients have the right to know what a suggested operation is for and the possible
risks involved. If he is unconscious or unable to make the decision due to other
reasons, informed consent needs to be taken from their nearest relatives.
99 Patients have the right to get a copy of their medical records and case papers on
request from the doctor/hospital.
99 If the patient needs to be transferred to another hospital, he has the right to know
the reason for this; and also has the right to make their choice of which hospital to
go to, in consultation with the doctor.
99 Patients have the right to get a detailed explanation of the bills they are asked to
pay.
Patient advocates can help patients secure the rights they are legally entitled to in India.
The following chapters will explain these rights in greater detail, and how a patient-advocate
can help uphold them. Remember Tenzin Gyatso’s wise words, “ It is not enough to be
compassionate.You must act”.

24

2. The Right to be treated with
Respect and Dignity

An advocate’s first priority is to alleviate the patient’s suffering and
to help them cope with their illnesses

A

patient advocate understands that his client is not a laboratory rat. A patient’s right to
compassion and kindness from every hospital staff member is undisputed.Additionally,
a patient also has the right to voice grievances and complaints and have those redressed
promptly. If a patient for some reason can’t do this himself, he can always seek help from the
advocate.
Healthcare professionals are intimately involved
with every aspect of life, right from birth to
death. It is the only profession, where no matter
what is going on in their personal life, their
first priority must be their patient - and as a
patient advocate your task is to remind them
that their patients come first. They are blessed
to be granted such a huge privilege, which is why
it is alarming to hear of horror stories about
the utterly shabby way in which some doctors
treat their patients.What gives them the right to
undermine the dignity of a patient?
Insensitivity to another’s pain might explain why
the rights of respectful treatment and autonomy
are being undermined with impunity by today’s
health practitioners. Constant exposure to
pain and suffering sometimes de-humanizes
doctors and nurses - especially when they are

25

Doctors Who Listen Reduce
Their Patients’ Pain
The late Anatole Broyard, essayist and
former editor of the New York Times
Book Review, wrote eloquently about the
psychological and spiritual challenges of
facing metastatic prostate cancer. “To
the typical physician,” he wrote, “my
illness is a routine incident in his rounds
while for me it’s the crisis of my life. I
would feel better if I had a doctor who
at least perceived this incongruity... I
just wish he would... give me his whole
mind just once, be bonded with me for
a brief space, survey my soul as well as
my flesh, to get at my illness, for each
man is ill in his own way.”

overworked, stressed and burnt out. Respect for the patient should be reflected in every staff
member’s action, word and behavior. “Putting Patients First” cannot just be an empty platitude
that hospitals print as a mission statement on their websites. The medical staff needs to be
specially trained to act with empathy, so they are able to show compassion to patients at all
times, even in the most provocative and stress-inducing situations.
Let me illustrate this with the case of an elderly man (78), who has a brain stroke and is left
with his right side paralysed. He is admitted into a government hospital, where the staff is
so overworked or time-strapped, they have little time to indulge a “senile, old man.” They
don’t understand that the patient is scared to death about the long-term implications of his
immobility, and why he demands so much attention from his attendants.
So once, when the patient has the urge to urinate in the middle of the night, he rings the
bell for the ward boy, who assumes that the patient is indulging in one of his tantrums, and
decides not to show up. After waiting for a few minutes, the patient gets impatient and tries
to rise from the bed unaided. He loses his balance, falls off the bed and ends up fracturing his
hip bone. Fractures are very common in patients of his age, but the untrained paramedic did
not see this coming, eventually leading to an accident that could well have been avoided. Even
worse, the fact that it was the ward boy’s tardiness that led to the fracture was hushed up, and
the family members remained clueless as to why this complication had occurred. The moral
of the story is that even when a patient is unreasonably demanding, the nursing staff has to be
patient and understanding.
Modern medicine’s emphasis on the technological and pharmacological treatment of
symptoms overlooks the fact that recovery from disease and trauma requires healing on all
levels: emotional, social, and spiritual. The outcome of a clinical intervention also depends on
the manner in which it is provided - and the doctor’s personality is often as important as
his technical skill. For example, some patients may be more comfortable receiving individual
counseling, while others (e.g. breast cancer survivors) may benefit more from group support,
where they are able to share their experiences with each other.These are carefully considered
decisions that only an empathetic doctor or advocate would be able to take on the patient’s
behalf.
It is an advocate’s responsibility to ensure that the care that the patient receives meets with
the accepted standards of medical ethics, and that the patient’s dignity is respected. If this is
breached, it’s her responsibility to report the matter to the hospital authorities, and have it
addressed to the patient’s complete satisfaction.

26

3. Right to Full Disclosure and Information

A patient has the right to know why a test is needed; what the
expected results are ; how much it costs; and how it can change
her treatment options
Sample these reported cases reported in the media:

I

n October 1989, Zairunnisa Parekh got
admitted for treatment of a tiny 1-cm stone in
her kidney at Jaslok Hospital, Mumbai. She died
35 days later of peritonitis. Her husband Yusuf and
son Mushtaq filed a case of negligence against the
doctors, stating that the hospital denied them a
copy of her medical records.
In another such case, Bhagwati Raheja died after
a by-pass surgery at Mumbai’s Nanavati Hospital.
The deceased’s husband maintained he was
refused a copy of his wife’s medical records.

Medical Council of India
Guidelines on Medical Records
The MCI Regulations 2002 state:
Indoor records need to be
maintained in a standard Performa
for three years from commencement
of treatment (Section 1.3.1 and
Appendix 3).
Request for medical records by
patient or authorised attendant
should be acknowledged and
documents issued within 72 hours
(Section 1.3.2).

On 11 July 2001, Sandhya Karmakar, 36, mother
of a ten-year-old boy, died at the SSKM hospital in
Kolkata. She had been admitted for appendectomy
on 26 June. The surgery went fine, but a surgical
mop was ‘inadvertently’ left behind in her
abdomen. Surgeon M L Shaha had to perform a second surgery to remedy the error on July
3. A leakage developed and to fix that, a third surgery had to be done on July 7. It was later
discovered that the doctor who had performed the appendectomy had left the entire postoperative process, including suturing the wound, to his nursing staff.

27

In these, and several other such cases, patients or their families had to seek intervention from
the Courts in order simply to access their medical records - documents that were legally
their property.When complications occur, hospitals invariably deny wrong-doing and the onus
shifts to the patient’s family to prove that what went wrong was a result of the doctor’s or the
hospital’s negligence. Without concrete evidence in their possession, this can be almost
impossible.
Patients and their families often complain that a particular doctor is keeping them in the dark
about the diagnosis or prognosis of a disease.A busy doctor, walking away from anxious relatives
with nothing more than a pat on
The Truth, the Whole Truth,
the shoulder (and sometimes not
and Nothing but Truth…
even that), is unfortunately a very
common sight in our hospitals.
Patients commonly complain that a Sometimes, withholding the harsh truth from the
physician orders a battery of tests patient is not a result of medical paternalism, but
or procedures, without explaining arises out of the doctor’s sincere desire to protect
why they are needed, how much the patient from emotional distress.. It’s not always
would they cost; what results are easy for a doctor to know how much truth the
expected; and how these would patient can tolerate and this can create a dilemma
affect their line of treatment.When for the doctor, as the following story, “The doctor’s
this basic information is not readily word” by R K Narayan illustrates:
forthcoming, the outcome can be
frustration that leads to growing
discontent with the doctor and
the hospital.
The reporting of several incidents of
medical negligence and subsequent
cover-up attempts by hospitals and
doctors have resulted in patients
being better informed about their
legal rights. Patients are now
demanding a more transparent
and accountable doctor-patient
relationship. According to a
Supreme Court directive, patients
and their relatives have the right
to be informed and this consent is
meant to educate the patient, not

Dr. Raman diagnoses his close friend to be critically ill.
The doctor knows that the patient has a good chance
of recovery if his condition does not deteriorate
during the night. Now the ethical dilemma confronting
Dr Raman is - should he tell the patient the truth
about his dire prognosis, or should be wait until the
next morning?
The patient has already expressed his wish to write
a will. The good doctor is in a fix. He resolves it by
deciding to deceive the patient, and tells him that he
can easily write the will the next morning, since there
is no urgency. The patient is relieved, and survives
What is the moral of the story? The doctor needs
to use his judgment as to whether or not to disclose
information that has the potential to harm the patient.

28

3. Right to Full Disclosure and Information
just protect the doctor and hospital. Merely asking the patient to sign a piece of paper thrust
in front of him by a nurse on his way to the Operation Theater will not serve the purpose.
Patient-advocates can help doctors to build a rapport with the patient, so that there can be
a full and frank discussion of the risks and uncertainties which are inherent in any medical
treatment.

29

4. Right to Simplified Information

Advocates can assist healthcare professions in providing culturallycompetent care to patients

I

magine lying on a hospital bed - anxious, uncomfortable, waiting for test results and fearing
the worst. Now imagine being probed in all the sore places by unconcerned doctors and
nurses who wear deadpan expressions as they stop by to take your vital signs, do blood
tests, and listen to your chest. Also imagine that the hospital that you have landed up in is in
some remote corner of Africa, and you don’t have a clue what the medical staff is saying, and
you cannot explain what you are feeling. This is often
how poor, uneducated, illiterate patients feel when they
First Person
find themselves in a large hospital in the city, where
everything is unfamiliar and threatening.
“If you speak English well, then
a doctor will treat you better. If
The reasons for healthcare disparities
you speak only Hindi and your
English is not that good, they
Some factors that contribute to health disparities are:
look down on you. They think
you are a fool.”
99 Persistence of centuries-old racial stereotypes
99 Time pressures caused by increasing case
loads

An uneducated woman from an
Indian village

99 Lack of decision-making skills in the junior
health care staff
99 Absence of a patient-advocate in the picture
Real or perceived discrimination in hospitals can lead minorities and the poor to mistrust
doctors and nurses. The onus is on the healthcare provider, who is the “more powerful actor
in clinical encounters” to see to it that such disparities do not occur, and if he fails in this duty,
it’s the patient-advocate’s responsibility to step in and correct matters.

31

In a recent survey, physicians reported that more than half of their patients do not follow
medical treatment as a result of cultural or linguistic barriers. While the majority of doctors
surveyed agree that language and culture are important in the delivery of care to patients, only
half of the doctors reported having any form of “cultural competency training.” This lacuna
is one which a caring patient advocate can fill competently, allowing him to act as a bridge
between the doctor and the patient.

The need for cultural competence in patient-advocates
Cultural competence leads to cultural awareness, knowledge, understanding, sensitivity,
interaction, and skill. It necessarily flows from good “communication.” Efficient health care
delivery also depends upon health literacy, which varies between different cultural groups.
Although poor health literacy can be a particularly thorny problem in patients with low
literacy skills, it can also affect patients who think of themselves as being literate. Even doctors
sometimes find it hard to make sense of the convoluted language which health insurance
companies and hospital administrators use in their forms. A patient advocate can help in
decoding this medical jargon.
Lay theories of anatomy and physiology can also influence how people interpret and respond to
their illness. In Indian villages, women often describe their menstrual blood as “bad” or “toxic”,
and are forbidden from entering temples or even their kitchens, when they are menstruating.
It is hardly surprising that they have a hard time describing their gynaecological problems to
doctors. The presence of an advocate can help transcend such cultural and linguistic barriers.

32

5. Right to Privacy and Confidentiality

The 1997 medical ethics guidelines proposed by the National Human
Rights Commission debar doctors from sharing a patient’s confidential
information for any monetary inducement

T

he exchange of information between a doctor
and patient is always confidential and personal.
Confidentiality helps patients to be frank and
honest with their physician, which in turn leads to better
health outcomes. A good doctor will protect patient
privacy, as it helps build trust and bonding between
them.The issue of confidentiality needs to be addressed
even more urgently with the introduction of electronic
medical records, which can be shared easily with the
click of a mouse. Although the electronic exchange of
health information offers significant benefits, it increases
the risk of inadvertently exposing private medical
information.

The meaning of confidentiality

Before You Give
Authorisation…
It is always important for a
patient to read and understand
anything he is asked to sign. If
he is authorizing a release of
his medical records, advise him
to ask for the specific purposes
for which the information
will be used and how long the
authorisation lasts.
Advice
your patients against signing a
form that asks them to release
their medical records for “all
legally valid purposes” without
specifying a time limit.

Because patients share so much sensitive, private
and personal information with their doctor, the duty
to maintain confidentiality has been enshrined in the
Hippocratic Oath. The International Code of Medical
Ethics states that “A physician shall preserve absolute confidentiality about all he knows about
his patient, even after his patient has died.”
As per the Medical Council of India Code of Ethics Section Clause 7.14, “The registered
medical practitioner shall not disclose the secrets of a patient that have been learnt in the
exercise of his/her profession except –

33

i) In a court of law under orders of the Presiding Judge;
ii) circumstances where there is a serious and identified risk to a specific person
In
and/or community; and
iii)
Notifiable diseases. It is his duty that he should inform public health authorities
immediately about any communicable or notifiable disease. “
Of course, matters become more complex
when there is a conflict between the right
to privacy and the right to health of another
individual.

Shh….A Patient Has the Right to
Confidentiality
Patients need to be confident that the
doctor will protect their confidentiality.
Thus, if you don’t want your psychiatrist
or your infertility consultant to call your
secretary to leave a reminder about
your next appointment, please make this
request in writing.

Ideally, information about a patient’s
records should not be released to anyone
outside of the hospital without the patient’s
authorization, unless it’s being shared with
another healthcare facility to which the
patient is being transferred, or if the release
has been ordered by a court. If this is being
done under a third-party payment contract
for research work on aggregated statistics, information sharing is permissible, provided the
patient’s identity is masked.
When software engineer, Abdul Mustafa (name changed) tested HIV-positive, he did not want
his employers or his friends to know about it. Had the doctor still gone ahead and divulged
this information, it would have amounted to a breach of trust and the confidentiality proviso.
The Health Insurance Portability and Accountability Act of 1996 (HIPAA) in the USDA
made several sweeping changes relating to privacy and confidentiality of medical records. It
established privacy procedures, the need to inform patients about these procedures; the need
to train employees to follow strict privacy guidelines, and the importance of designating an
individual to oversee the healthcare organisation’s privacy initiatives. In India, where such laws
don’t exist, it’s important that patients seek the help of patient-advocates in securing their
right to privacy and confidentiality.

34

6. The Right to Informed Consent
in a Clinical Trial

A patient participating in a clinical trial has the right to know all the
information regarding the trial, including its potential benefits and risks, so
that he can make an informed decision

C

linical trials are scientific research experiments, conducted on human volunteers in
order to find new ways to prevent, detect and cure diseases. Medical science has grown
leaps and bounds on the back of such biomedical research. When done properly, such
studies are very useful in improving our medical knowledge base.
However, not all clinical trials are conducted ethically. This is especially true in India, which
is fast becoming an attractive destination for carrying out clinical trials, primarily because
we have a huge and diverse pool of patients on whom these trials can be conducted fairly
inexpensively. Many of the patients chosen are uneducated, who can easily be exploited by
doctors, researchers and pharmaceutical companies, alike. Unethical researchers (who get
paid huge sums for signing up as many participants as possible) may exaggerate the benefits of
a treatment, offer financial sweeteners, or attempt to play down the risks of the trial.
In 1997, the oncology division of the Indian Council of Medical Research (ICMR) carried out
an observational study on cervical cancer in Indian women.The study did not have any ethical
clearance from the All India Institute of Medical Sciences (AIIMS) from where the subjects were
drawn ; nor did the researchers get informed consent from the subjects themselves. Under
the ICMR study, 1100 uneducated urban women from Delhi with pre-cancerous lesions were
studied between 1976 and 1988.The objective was to study the natural progression of cervical
dysplasia to cervical cancer (the most prevalent cancer amongst Indian women) without any
medical intervention. So despite the fact that a simple surgery would have removed the
cervical lesions, before they could turn cancerous, the women were wantonly left untreated.
The outcome was that 62 of these women needlessly developed cancer; and in nine the
disease had already spread to other parts of their body.

35

In another equally scandalous incident, an Indian scientist attempted to inject the bovine HIV
strain into a human subject.This research was also not approved by any ethical body. Likewise
there have been reports of a pig’s heart transplant into humans; and controversial trials with
mepacrine, an anti-malarial drug that
Audio-Video Recording of Consent
is injected into a woman’s uterus for
Process Will Soon Be Made Mandatory
contraceptive purposes, although
some doctors suspect it causes cancer.
While it is important that clinical trials need to
Although every hospital unit is
be allowed in India, these have to be fair and
supposed to have its own ethical
transparent. With a view to curb the practice of
committee, in our country most are
procuring illiterate subjects and making them sign
defunct bodies. The National Human
consent forms which they do not understand,
Rights
Commission
(NHRC)
the Union health ministry is planning to amend
guidelines propose that a research
the Schedule Y of the Drugs Cosmetics Rules
group must provide human subjects
to make audio/video recording of informed
with printed literature, explaining in
consent process in clinical trials mandatory.
simple, non-technical language, the
The amendment seeks to ensure that the trial
purpose of the study; details of the
subjects are adequately informed about the
procedure; the risks involved; the
failure of investigational products. The purpose is
financial or other interests of the
to make participation in clinical trials voluntary.
researcher; and a commitment to
treat, completely and free-of-cost, any
(Source: http://pharmabiz.com/ArticleDetails.
aspx?aid=71218sid=3)
complication that may arise during
the course of the trial.
The subject too has to certify in writing that she has understood the document and is
volunteering to participate in the research, without the promise of any monetary inducement
that is not permitted under the Indian law. There are a few other government bodies that
monitor clinical trials such as the Drug Controller of India and the Clinical Trial Registry in
India (CTRI). Nonetheless, the Supreme Court recently expressed reservations about the
unethical way in which most clinical trials are being conducted in the country, and has directed
the Ministry of Health to formulate proper guidelines on this, to protect patients’ interests.
According to existing rules, an ethically sound clinical trial:
99 Will aim for the enhancement of medical knowledge
99 Will have strong scientific validity
99 Will recruit participants fairly
99 Will have a favourable risk-benefit ratio

36

6. The Right to Informed Consent
in a Clinical Trial
99 Will have people who independently review, approve, amend or terminate it
99 Will obtain informed consent from its participants
99 Will respect the participants privacy and will strive hard to protect their wellness
and rights

Role of patient advocates in clinical trials
Patient-advocates can play an extremely important role in clinical trials. Among other things
they are required to:
99 Make sure whether the information about the trial is presented in a format which is
easily understandable to the patient
99 Assist the research team in developing relevant educational materials about the trial
in lay-friendly terms that is simple and easy to understand
99 Identify and address potential ethical issues in the trial
99 Promote patient safety and confidentiality
99 Assist the research team in obtaining valid informed consent from the patients,
recruited in the trial

QUIZ TIME: Informed Consent Quality Assessment Questionnaire
Use this form to gauge patient’s understanding of their participation in clinical
trials
99 Do you feel that you have been informed how long your participation in this clinical
trial will last?
99 Do you think that all the treatments and procedures that the investigator proposed
for you are the best for your disease?
99 Do you understand what “randomisation” means?
99 Do you know that no direct medical benefit will derive to you from your
participation in this clinical trial?
99 Are you sure that your participation in this trial will not involve any additional risk
or discomforts?
99 Do you know that because you are participating in a clinical trial, it is possible that
the study sponsor, various government agencies, or others not directly involved in
your health care could have access to your medical records?

37

99 Do you know that the consent form you signed lists the names of the contact
persons, who must answer any of your questions or concerns about the clinical
trial?
99 Do you know that the consent form you signed describes how you will be covered
by insurance if you are injured or become ill as a result of participation in the
clinical trial?
99 Do you understand that if you do not want to participate in the clinical trial you are
free to refuse to sign the consent form? This will not affect the quality of medical
care you receive, so you do not need to be scared that your doctor will get angry
or upset if you refuse to participate.
99 Do you understand that you are not obliged to remain in the clinical trial if you
decide to withdraw at any point of time?
99 Explain in your words the purpose of the clinical trial to which you have consented
to be a subject.
A patient-advocate who uses such questionnaires with patients who have been recruited
to participate in a clinical trial will help to protect the patients; and will also ensure that the
research team is never caught on the wrong side of the fence.

38

SECTION 2

PATIENT
ADVOCATE’S
RESPONSIBILITES
TOWARDS
CRITICALLY ILL
PATIENTS

7. Caring for the Seriously-ill

Patient-Advocates can help a patient or his family make important decisions in
an emotionally-charged medical scenario

I

n the ICU (Intensive Care Unit), treatment
decisions are based not just on medical grounds
or statistical probabilities. They are emotionallycharged decisions, with significant cost implications,
that a patient advocate can help the patient deal
with.
The clinical director of an Intensive Care Unit
(ICU) once described a dilemma he faced in having
to decide whether to withdraw intensive care
treatment from a woman in her mid-seventies.
The patient had undergone emergency surgery
to repair a ruptured aorta, and subsequently
developed pneumonia and renal failure. She was
sedated, placed on a ventilator and treated with
dialysis. Days passed during which the medical
team could not agree on the next course of action
- whether to withdraw the life support system and
allow the woman to die peacefully, or continue the
intensive care at a steep cost to the patient’s family.
Was the care futile? Or did they have a chance to
save her life?
Since
India,
which
see if

euthanasia (mercy killing) is illegal in
eventually a compromise was reached,
involved waiting a further 48 hours to
continued ‘full’ treatment produced any

41

What Can an Advocate Do for
Critically-ill Patients?
ff Intervene when the best
interests of the patient are
potentially in jeopardy.
ff Help the patient obtain
necessary care.
ff Ensure that the values, beliefs
and rights of the patient are
respected.
ff Provide education and support
to help the patient or his family
makes important decisions.
ff Support the decisions of the
patient or his family if they decide
to shift the patient to another
healthcare facility.
ff Monitor the quality of care that
the patient receives.
ff Act as a liaison between the
patient, his family and healthcare
professionals.

improvement in her condition. If not, the doctors decided they would not make any aggressive
efforts to save her life and would wean her off the ventilator in a careful, phased manner.
This was an emotionally charged decision – as all such “end of life” conversations can be both for the doctor and the family. Eventually, a patient-advocate was called in, who served as
a useful communication bridge between the two parties. The doctors explained the medical
facts of the case to the advocate, who in turn, explained them to the family, in more simplified
terms. She gave them enough time to process this information; was patient and answered
all their doubts and questions; helped them to play out possible scenarios and outcomes;
allowed them to negotiate with each other; and acted as a neutral referee when there were
heated arguments. The family members felt comforted that their voices were being heard by
the medical team and that they were participants in the decision-making process. Everyone
was actively involved and they eventually reached a decision that they were all comfortable
with, so she could die in peace, without meddlesome interventions. If they had been left to
their own devices, without any support from an advocate, the family may not have been able
to make a well-informed decision and would have been forced to passively watch their loved
one suffer pain and misery while she progressively deteriorated.
When framed this way, the family did not feel guilty that they were abandoning the patient or
allowing her to die, just to save their money. They realised that this was a decision they were
all making, in her best interests, because the chances of her being able to lead a productive
life were so slim. Such critically-ill patients can be found throughout a hospital - in emergency
departments, post-anesthesia recovery units, interventional cardiology labs, pediatric and
neonatal intensive care units, and burn units - and a well-trained experienced patient advocate
can help both the medical team and the family to make decisions they are comfortable with.
Here’s another real life story. A man received a frantic call from his daughter-in-law, asking for
help. Her husband had met with a terrible road accident. When he arrived at the hospital, he
discovered that his son had several fractured ribs, bruised lungs, and a fractured skull and to
make matters worse, he had serious breathing problems that required him to be quickly put
on the ventilator for respiratory support. The patient was unconscious and remained in that
comatose state for four long weeks.
The patient’s father, who is a friend, later confided in me that when he first laid eyes on his
son, he experienced a feeling of “terror.” Tears welled in his eyes as he felt a wave of anger
and impotence. As a person who always likes to remain in charge, he suddenly found himself
in unfamiliar territory, frightened, clueless and helpless; trapped in a situation in which his
son’s life lay in balance and all the crucial decisions related to his life were being taken by
total strangers. That’s when he decided to bounce back and asked to become a part of the

42

treatment team. He decided to appoint himself as his son’s “advocate.” Fortunately, the medical
team was also receptive to this idea and was happy to have him on board.They willingly shared
the responsibility for decision making with him. By assuming ownership of his son’s care plan,
rather than leaving everything upto the doctors, the father helped his son to make a quick and
total recovery.

Why do you need a patient-advocate for seriously-ill patients?
In reality, you need one in every unfamiliar medical situation. Self-proclaimed experts with
half-baked information can strike fear in your mind when you have a medical problem.What if
your fibroids are malignant? If you have gall bladder stones which aren’t troubling you, should
you allow the surgeon to completely remove the organ? Is the ECG really abnormal, or is the
squiggle a normal variant? Should you agree to do the stress test because of your chest pain?
Or is it just heartburn, which will get better soon?
Someone has to find answers to these questions and it can be a lot better if that person is a
concerned family member or a trusted friend in whose judgment you can repose complete
faith. Let’s face it: there are good doctors around, but their number is dwindling alarmingly.
99 How do you cross-check your doctor’s opinion?
99 Are there simpler treatment alternatives available which he has not discussed with
you?
99 Will your health insurance company pay for your full treatment cost? Or will they
do their best to reject your claim on every flimsy pretext they can think of, to save
themselves some money?
There can be myriad worries, doubts and questions plaguing you before a complicated medical
procedure. Where do you go for help and guidance? While your doctor is naturally your
first choice, what happens if he is too busy, or unconcerned? Or if you cannot understand
his medical jargon; or if you suspect he has a vested interest in recommending complicated
surgical solutions that may not be actually required. Here’s where a patient advocate can be
invaluable.Typically, there can be four kinds of events that call for the intervention of a patient
advocate:

43

Life-threatening situations: Sudden accidents or emergencies, where you are unable to
make an intelligent, informed decision on your own. You may be unconscious, or heavily
medicated.
High-risk situations: Typically, a high-risk
Your Advocate as your
patient faces potential threat to life, limb or
Spokesman
organ. Such patients need very alert attendants
to watch over them. A patient advocate who bats “Belief can cure and belief can kill.”
for you can employ a heightened “sixth sense” A patient’s belief and confidence in
that comes from experience and maturity. A high- his ability to recover must remain at
risk patient’s condition can easily deteriorate, and the forefront of his care plan. Some
urgent intervention can prevent a bad situation patients speak up for themselves,
from getting worse. Doctors, especially big- while others think more and speak
name specialists, often have to deal with so many less. Some patients are too sick and
patients, that they can’t be counted upon to be tired to care, much less to speak. All
fully engaged with one patient. The bigger the these patients need the protection
reputation, the less likely it is that the doctor will advocates provide.
be able to devote his full attention to one patient,
howsoever critical her condition may be, unless
she has come to her with the right references, either from a medical colleague or a “political
connection.” There is no dearth of horror stories related to medical negligence in both public
and private sector hospitals all over the world. This is what makes the presence of a patient
advocate all the more important.
You are recovering from severe physical or psychological trauma: This may not be a
life-threatening situation, yet requires decision-making that has serious long-term implications,
and you may not be able to think clearly for yourself at this time.
Chronic medical conditions: There are many conditions, such as cancer, arthritis, and
heart disease, in which even educated well-informed patients find it hard to choose the right
treatment option, because there are such a bewildering variety of choices available today.

An advocate mobilises scarce resources
For starters, an intelligent, experienced patient advocate needs to know - How many different
kind of resources is this patient going to need in order for the physician to treat her most
efficiently and effectively? Does the patient need immediate blood transfusion? Financial aid?
A second opinion? The patient-advocate needs to draw on her past experience with similar
patients, so she can mobilise these resources well in advance, rather than having the doctors
make the family members run around at the last minute.
44

An advocate needs to make an accurate assessment of the patient’s condition, to determine
what sort of help would be needed over the course of hospitalisation, and to judge how
fast it can be delivered. In order to be able to do this, the advocate must be familiar with
the hospital’s facilities and also be knowledgeable about “prudent and customary” medical
standards of care.
Ask yourself, “Given this patient’s condition, what are the main resources that a physician
would be likely to utilise?” The resources that we are talking about here can be:
99 Specialised pathological tests
99 Blood and blood products
99 Imported medicines
99 Consultations with other doctors
99 Sophisticated imaging studies
Most of all, a patient advocate needs to empathise. She needs to ensure that a patient is not
just a ‘medical case’ for the hospital staff – she is someone’s wife, mother, sister, child or a
friend. Every medical decision is going to affect these people as well. There could be so many
lives hanging on that one single life, so the decision she takes on the patient’s behalf has to be
reached with the active involvement of all these stakeholders.

45

8. The Problem of Defining Death

Often a patient-advocate has to transcend artificial boundaries to counsel
her clients in an objective, value-free manner

B

ecause a doctor-patient relationship is so personal, intimate and special, it often raises a
number of ethical dilemmas. One major controversial issue, a discussion of which often
raises more heat than light is: how do we define death?

Liberals argue that physicians and family members must respect a critically-ill patient’s
personal decision to forego life-sustaining treatment (“life-sustaining treatment” implies
the use of mechanical ventilation, renal dialysis, chemotherapy, antibiotics, artificial nutrition
and hydration). Unfortunately, in medical practice, there is no ethical distinction between
withdrawing (stopping once it has been started) and withholding (never starting) life-sustaining
treatment - while in real life, there is a world of a difference between an act of commission (do
we start life support?) and an act of omission (do we discontinue the life support the patient
is already on?).
A competent, adult patient may, in advance, formulate and provide valid consent to withholding
or gradually withdrawing life-support systems, but if these advance directives are not available,
then a patient advocate should be able to counsel the patient’s family in reaching the right
decision that serves the best interests of the patient. Patients should also be able to appoint
surrogate decision-makers who can make decisions on their behalf, in case they are not able
to, in accordance with the prevailing law.
Surrogate decision-makers

Patients do not automatically lose the right to refuse life-sustaining treatment merely because
they are medically unable to make such decisions for themselves. Authorised persons can be
legally allowed to make treatment decisions for them. In every country, including India, the law
recognises a hierarchy of surrogate decision-makers who can be relied upon to take crucial
decisions related to a patient’s treatment, on the patient’s behalf. Physicians, in turn, have the
responsibility to make a “reasonable inquiry” as to whether the patient has a legal guardian,

47

or if someone else (such as a patient-advocate) has the power of attorney over end-of-life
healthcare decisions.
This kind of a decision-making is often vested in:
99 The patient’s legal guardian
99 The patient’s spouse
99 An adult son or daughter
99 Either parent
99 An adult brother or sister
99 An adult grandchild

Physicians Please Note

99 A close friend
99 The guardian appointed by the estate
If there are multiple surrogate decision-makers
present, they may be asked to reach a consensus
on behalf of the patient. If there is conflict among
them, this will need to be resolved. Though the
surrogate’s decision for the incompetent patient
should almost always be honoured by the doctor,
there can be four exceptions to this rule:
99 There is no available family member
willing to be the patient’s surrogate
decision-maker;

In recognising the legitimate role
of advocates, physicians should be
prepared to fully discuss:
ff Limitations imposed on their
participation by privacy laws and
other statutory and regulatory
requirements and
ff How other legal instruments, such
as power of attorney, living wills
and advance directives may affect
their roles.

99 There is a dispute among family members on what decision to take
99 There is sufficient reason for the doctor to suspect that the family’s decision is
clearly not what the patient would have decided if she were competent; and
99 If the doctor suspects that the decision is not in the patient’s best interests
Let’s take the following illustrative case:
Kartar Singh (82) is the patriarch of a large Sikh family. He suffered haemorrhagic stroke two
months ago that left him paralysed and in a partially vegetative state, unable to communicate
in any meaningful way. His families’, including his daughters and granddaughters began to care
for him at home and have been feeding him by mouth for the entire duration of his illness. Last
week however, his condition deteriorated and he is now having difficulties swallowing.
48

8. The Problem of Defining Death
Dr Abdul Rehman, his physician for the past eight years, suspects that his patient may have had
cerebral bleeding that worsened his condition. He is concerned that Singh may choke on food
or aspirate, causing a chest infection, which would further complicate matters for the patient.
Dr Rehman discusses the case with Singh’s daughters. They want to continue caring for their
father at home including feeding him by mouth and looking after his nutrition and hydration
needs, if that is at all possible. They are also convinced that their father would have expressed
the same wish, had he been able to communicate.The family is extremely concerned that if he
goes back into the hospital, he may not come back home alive.
After careful discussion of the case with the family, during which Singh’s eldest daughter acts
as his primary patient-advocate, it is agreed that for the time being the patient would continue
with the care delivered at home. However, just as the doctor suspected, two weeks later,
Singh has to be rushed to the hospital with a chest infection caused by aspiration of food
into his lungs. He is treated with IV antibiotics and a drip is inserted to provide hydration and
stabalises his condition. A CT head scan also confirms progressive cerebral bleeding.
The family is struggling to come to terms with their father’s condition. They are unprepared
for this eventuality, so the well-meaning doctor arranges for a third party advocate, a Sikh
priest to come and speak with the family, and explain to them what might happen if they insist
on taking the patient home in this critical condition.
On the sixth day, Singh dies peacefully in the intensive care unit of the hospital, surrounded by
his loving family members. The family feels indebted to the priest and the doctor’s team, who
extended them just the kind of direction and moral support they needed in their time of need.
A trusted, wise and respected member of society can often be called in to play this role at the
last minute. Religious leaders, in whom the family reposes full trust, deal with such challenging
situations, almost on a daily basis. However, rather than having to run around to hunt for a
patient advocate at the last minute, it’s much better to appoint one well in advance, so that
the family can bond and establish a relationship with her.

49

9. How to Deliver Bad News

One of the main goals of a patient advocate is to support grieving families
in accordance with their cultural values and personal preferences

O

ne of the most challenging tasks for
patient-advocates is to deliver bad
news about impending death to a
family. It is never an easy task, even for the
most seasoned of healthcare professionals.
Dr Sudhir Bhatia, a senior internal medicine
resident receives the lung biopsy results for
Tushveen Khanna, an attractive 26-year-old
patient, who has her whole life ahead of her
and is busy shopping for her wedding planned
for next month. Khanna’s test results show
she has an advanced stage of lung cancer.

Softening the Blow
Imparting bad news is an emotional
experience for the advocate as well as for
the patient, so take a moment to recognise
this and calm yourself. You may like to say,
“You do have cancer and it is a serious illness
but it’s not a death sentence, especially these
days.You will need a major operation followed
by some treatments that will make you feel
very unwell but you can get through it.You are
in good hands and you have lots of people
around who care about you. If the worst does
come to the worst, we can control pain without
knocking you out and without loss of dignity.
You have a fight on and we can win. One of
the most important features is your attitude.
Remember that if you have any problems or
want to discuss anything we are here for you.”

According to standard medical protocol,
Dr Bhatia orders a PET scan and requests a
consultation with a cancer specialist. An hour
later, a nurse phones to inform him that the
distraught patient has refused to undergo the
PET scan until she sees her doctor. It suddenly
strikes Dr Bhatia that no one from his team
(Source: http://www.patient.co.uk/doctor/Breaking-Badhas discussed the biopsy results with the
News.htm)
young woman and prepared her for what lies
ahead. Sometimes, doctors are so focussed
on “treating” abnormal test results that they forget about the patient.

51

When he finally gets to see her that evening, Dr Bhatia finds her sleeping, with a young man
keeping a watchful vigil over her. Dr Bhatia gently wakes up the patient. “Hello, Ms. Khanna. I’m
sorry to wake you, but I need to speak with you about your biopsy results. Unfortunately, it’s
positive. I’m afraid it looks like you have lung cancer. We need to run another check on you,
a PET scan, which would determine the spread of the cancer, but the nurse told me that you
have refused it. Meanwhile, I’ve asked Dr Mukhesh Batra, who is a specialist in lung cancer to
also come and examine you. Do you have any questions?”
The girl looks at him wide-eyed and scared. Her fiancé is equally bewildered. For a brief
moment, they are both silent. Then finally, he speaks up, “I thought she had pneumonia. Now
all of a sudden she has cancer?”
Before Dr Bhatia can respond, the poor girl bursts
into tears and exclaims, “I don’t want to get any more
tests done! I just want to go home!” “She is right. We
just want a discharge,” says the young man.

Make it a Dialogue
“Breaking bad news is not as
much a delivery as it is a dialogue
between two people.”

Their reaction catches Dr Bhatia off guard. Didn’t the
news sink in? Didn’t the girl and her fiancé understand
Rabow MW, McPhee SJ
what he has just told them about the biopsy results?
Suddenly he is unsure what to do next. He has three
more patients to see before he can leave for dinner and home. He tries to calm down the
young girl and persuades her to get the test done, but she adamantly digs her heels in. Dr
Bhatia suddenly feels helpless and cannot understand why the patient is being so uncooperative.
He tries to hide his frustration as he decides to leave to find the oncologist and get him to
talk to his distraught patient.
What is Empathy?
No marks for guessing where things went wrong in
Empathy fosters collaborative
the first place.
effort. It’s the ability to sense
another person’s feelings as if
Is it necessary to tell the patient?
you were that person, while
The answer is yes.
retaining your objectivity. Many
experts argue that empathy
Fifty years ago, it was standard practice in India to
is more an internal trait, a
withhold the diagnosis of advanced cancer from a
characteristic that depends on
patient. Often the relatives themselves pleaded with
qualities intrinsic to a patientthe doctor to hide the truth from the patient, because
advocate’s personality rather
they were worried that the patient would not be able
than a communication skill.
to digest the “shock.”
52

However, mindsets have now matured. Studies have shown that patients do want to have the
correct diagnosis, even if it is bad news, because they don’t want doctors and family members
to play games with them. It is important that patients are given all the medical facts, especially
about their own health. They have a right to know, so that they can make informed choices
about their medical, personal and legal matters.
Undoubtedly, breaking bad news to critically-ill patients can be a challenging task but for the
healthcare professional, it’s an occupational hazard that comes with the territory. For a young
and inexperienced physician, it can be particularly stressful, especially when the patient, as in
this case, is young and there are limited prospects for recovery.
This is where a patient advocate can help. She can help all the stakeholders - the doctor,
the patient and the family - in managing the medical crisis by providing truthful and accurate
information about possible health outcomes, without deflating the patient’s hopes for recovery.
Indeed, breaking bad news kindly and managing a patient’s expectations is one of the most
important tasks that a patient advocate
After a Loved One Dies - A Patient
can discharge. The advocate has to be wise
Advocate’s Tips to What You Can You
like the Roman God, Janus, and be able to
Do to Help Yourself
see both the doctor’s perspective, as well
as the patient’s, so they can both talk with
ff Talk to your close family and friends,
each other.
especially those that you feel understand.

Stick to the medical facts
Patient advocates might find these tips
on how to soften the blow useful…Start
from what the patient understands. Begin
at his level and use words that are devoid
of medical jargon, so that a lay person can
understand them easily.
99 Try to substitute non-technical
words such as “spread” for
“metastasised” and “sample of
tissue” for “biopsy.”

ff Don’t listen to those who say you
‘should be doing better than you are’.
ff Remind yourself that it’s perfectly
normal to feel sad and depressed at this
difficult time in your life..
ff Find ways to continue your bond with
the person who has passed on. Do the
things you used to do together - for
example cooking, or gardening.
ff Above all, be kind to yourself.

99 Avoid careless bluntness (e.g., “You are at the terminal stage and unless you get
prompt treatment, you are going to die.”). Even if this happens to be the crux of
your message, it has to be cloaked in sensitive language.

53

99 Hand out information in small, digestible chunks and check periodically to ensure
that the patient has understood what you are saying.You may need to repeat what
you say, in order to ensure that the information sinks in, so be patient.
99 When the prognosis is poor, avoid phrases such as “There is nothing more we can
do.” The truth is that there is always something which can be done to help the
patient and even if we cannot cure, we can always relieve pain and suffering. Unkind,
fatalistic pronouncements interfere with helping the patient achieve other important
therapeutic goals, such as pain control and other symptom relief.
99 Never abandon the patient. Always let her know that you are there for her, no
matter what.
Responding to the patient’s emotional reactions is one of the most challenging tasks for an
advocate. The patients’ reactions may swing wildly from silence to disbelief, crying, denial,
shock, grief or plain anger. She may use you as a punching bag, so be prepared to act as an
outlet for outbursts.

An empathic response calls for four kinds of interventions:
99 Carefully observe and remain alert to any exaggerated display of an emotional
reaction, such as stunned silence.
99 If the patient appears extremely miserable, use gentle probing questions to nudge
them into producing a reaction, even if it entails triggering a rush of tears. Bottledup emotions can harm a patient, and they should feel comfortable in sharing their
deepest fears and worries with you.
99 Identify the reason for the emotion. If you are not sure, ask the patient.
99 Finally, after you have given the patient a brief period of time to express her feelings,
pledge your support and explain to her that you will stand by her side to hold her
hand; and that she is not alone.

Communication strategies
Here are a few communication techniques that you, as an advocate, can use with critically-ill
patients:
99 Warn her that difficult news is forthcoming.You can do this by stating, “I’m afraid
the results reveal the situation is more serious than we would have hoped for...”
99 The patient is your first priority. However, if she wants other people present at this
time (for example, her spouse), be sure to attend to them as well.

54

99 Sit down and speak slowly, clearly and concisely.
99 Provide the information in small chunks; do not give a long lecture, which can be
overwhelming for an anxious patient.
99 After discussing each segment, pause to allow the patient to take in what you have
stated. This is known as “chunk and check.” To ensure understanding, you must ask
the patient to repeat what you have said in her own words. This is called the “teach
back” or “show me” method.
99 Be honest about the prognosis; do not give false hope. Be sensitive, yet direct.
99 Be empathetic (e.g., “I know this is difficult for you.”)
99 Don’t do all the talking. Allow the patient to ask questions and to vent.
All said and done, bad news must be delivered after carefully assessing a patient’s level of
understanding, compliance, and wishes for disclosure. Speak slowly so that the patient and her
family understand. Choose your words thoughtfully and try to avoid causing any unnecessary
mental anguish and anxiety.
Last but not the least, a patient advocate can help to reassure the patient that her doctor will
abide by three solemn commitments to her critically-ill patient:
99 That every effort will be made to treat and relieve her pain and other symptoms.
99 That her physician will not abandon her in this difficult hour and will be actively
involved in the care process, every step of the way.
99 That he will support and honour any decisions that the patient or her family makes
on her behalf.

55

10. Caring for the Bereaved

As a patient-advocate you must learn to identify the various stages of grief
as you help the family cope with their loss

T

alking about death is never easy. In A Grief Observed, author C.S. Lewis writes about his
experience of his wife’s death, “No one ever told me that grief felt so like fear. I am
not afraid, but the sensation is like being afraid. The same fluttering in the stomach, the
same restlessness, the yawning, I keep on swallowing. At other times it feels like being mildly
drunk or concussed. There is a sort of invisible blanket between the world and me. I find it
hard to take in what anyone says...Yet I want the others to be about me.”
Everyone experiences bereavement
at some point in life, but when it’s
sudden and unexpected, the loss can be
tremendous.The news can come as a big
shock, completely throw a person offbalance and overwhelm him by a rush
of emotions. As a patient-advocate, you
can lessen someone’s grief by bearing in
mind the following principles of care:
99 Contact relatives promptly and
stay with the family throughout,
while liaisoning with the rest of
the medical and nursing team.
99 Make available special
provisions for the bereaved
family, including a quiet place to
mourn, and help them access
spiritual support.

The Grief Process
Psychologist J. William Worden explains the
various ‘tasks’ that need to be performed to
help a person cope with the loss of a loved one:
ff To accept the reality of the loss, where
feelings of shock and numbness are present
ff To work through the pain of grief, by
tackling the feelings of guilt, anger, distress
and regrets
ff To adjust to an environment in which the
deceased is missing, so that the reality of
what has happened may sink in
ff To emotionally relocate the deceased and
move on with life, where a re-engagement
with life is activated whilst at the same time
finding a way to keep the memories close.

57

99 When bad news is delivered, it must be done gently and honestly, avoiding
euphemism and long-winded medical explanations.
99 Provide both verbal and written information to the survivors: what to do next;
mortuary procedures, possibility of a post-mortem examination; organ donation, if
the family is interested or the deceased had expressed that wish; and details about
grief counselling; and follow-up.
Grief creates a whirlwind of emotions, and can be a highly traumatic and devastating experience
for some, leaving them incapacitated to deal with the reality of the situation. This is when an
advocate’s help is needed the most.

The various stages of grief
As a patient-advocate you must learn to identify the various stages of grief as you help the
family cope with their loss. In her pioneering 1969 book On Death and Dying Elisabeth KüblerRoss identifies the following five stages of grief:
99 Denial
99 Anger
99 Bargaining
99 Depression
99 Acceptance
The intensity and duration of each stage depends
on the significance of the change or loss, and
also the survivor’s personal resilience. Patientadvocates should use the following eight-step
framework to help bereaved families:

Major Takeaways
99 Being involved in your own
healthcare could save you
money time, reduce stress
– and even save your life.
99 It’s a lot of work being your
own patient advocate but the
payoffs are worth the time
spent.

99 Select an appropriate setting
99 Contact the family
99 Prepare to speak to the family
99 Tell them about the death, as gently as
possible
99 Study their reactions
99 Allow them to view the body and stay
close to them
58

99 Just because someone has
an MD degree at the end
of their name doesn’t make
them immune to making
mistakes.

10. Caring for the Bereaved
99 Co-ordinate the respectful handling of the deceased’s body
99 Assist them in follow-up actions, such as organ donation, arranging the postmortem, getting the death certificate, preparing for the cremation, and so on.

Notifying death
Breaking bad news is one of the most difficult and sensitive tasks that healthcare professionals
have to perform, and poor communication skills can leave families confused, angry, scared
and scarred. Patient-advocates must avoid elaborate euphemisms. Equally harsh in the Indian
context are words such as dead or died. Use soft phrases such as “he has passed on,” “he has
slipped away” and “we have lost her” and deliver those words sensitively.

59

SECTION 3

WHEN YOU
ARE YOUR
OWN PATIENTADVOCATE

11. How I Became a Patient Advocate

Prabhakar Rao
A father recalls the tragedy of the untimely death of his son - and how this
gave birth to JASCAP

A

S far back as I can remember, I’ve always volunteered to play an advocate to someone
or the other. Over the years, I’ve helped a fairly large number of young people launch
or advance their careers and this was done by being their advocate and mentoring

them.

But, first things first. Let me introduce myself first. I am a textile technologist from Bombay
University and have spent over forty years in business and industry in India and abroad. I
started, like everyone else does, I suppose, at the bottom of the pyramid and rose rather
rapidly to senior and then chief executive positions.
Many a times, youngsters who had worked with me or came in contact with me requested
help in getting placements or promotions and I enjoyed playing the role of their advocate
and helping them succeed. In May 1996, my only son, 30-year-old Satyajit, died of cancer in
the United States where he was working as a software engineer. I was 60 then and this tragic
event shattered our life and turned it topsy-turvy. I was then the chief executive of a textile
company in Mumbai.
While in the US and performing the last rites of my son, I came across a fairly large number
of brochures, pamphlets and booklets on cancer in general and on lymphoma; the cancer
that took him from us. He must have sought that literature from various cancer support
organizations to help him cope with his cancer and its subsequent treatment. Browsing
through that literature during that trip to the US, a germ of an idea took root in my mind.
Upon our return to India, I gave up my job and my wife Neera and I decided to transcend
our grief into a socially useful project to help cancer survivors in some meaningful way. We
set up a charitable trust to help cancer patients in Mumbai. That marked the birth of “Jeet
Association for Support to Cancer Patients” (JASCAP), a voluntary organization dedicated to
cancer patients, their families and friends.

63


Briefly, our objectives at JASCAP are:
99 To comfort and counsel cancer patients and their families and instill in them the
confidence, courage and determination to fight this life-threatening disease, thus
rendering their medical treatment more effective
99 To inform and educate cancer patients and their families about the various
treatment options; and their respective physical and emotional side effects and how
to cope with these
99 To help patients and their families do everything possible to cooperate fully with the
medical care team and thus assist themselves towards a possible cure or to live life
as comfortably as possible with this disease
99 To prepare and disseminate printed and audio-visual material dealing with cancer
and its after effects to better prepare cancer patients and their families to face this
disease and remove or alleviate fears, especially those based on misconceptions and
incomplete understanding of the medical issues confronting them

To achieve some of these objectives, we have taken the following initiatives:
99 Obtain and disseminate up-to-date and accurate information about cancer, its
causes and methods of treatment, medical as well as non-medical
99 To prepare, print, publish and circulate pamphlets, booklets, slides, posters and other
educational material, in English, Marathi, Hindi and other Indian languages, in order
to provide patients and their families with accurate, scientific, medical and clinical
information and knowledge about cancer; the different methods of treatment,
control and post-treatment care plans for the patients
99 To provide guidance, help, counseling, support and comfort to patients in various
forms in order to pave the way for their rehabilitation into the community
99 To enlist support of medical professionals, pharmaceutical manufacturers, social
workers, voluntary organizations, government institutions, dispensaries, hospitals,
medical centers; in India and abroad in fulfilling these objectives of JASCAP
99 To collect funds by way of membership fees/donations as also gifts, books,
equipment and audio-visual communication/education aids for patients and those
around them, as well medicines for patients in need of these supplies
99 To recruit social workers, nurses and volunteers from the medical profession, who
are interested in lending their support to JASCAP and strengthen our activities with
lectures, seminars and study classes.

64

11. How I Became a Patient Advocate
99 To build strong linkages and partnerships with institutions and other voluntary/
governmental organizations, hospitals, in India and abroad that are working for
similar causes in order to further the objectives of JASCAP
99 To carry out public health activities such as supporting anti-tobacco campaigns, in
order to make our society cancer-free
Pledging and pooling in my limited financial resources, we founded JASCAP. Friends and wellwishers scoffed at the idea first, but seventeen years down the line, the response from canceraffected patients, the medical fraternity and the voluntary sector has been overwhelming, and
this has reinstated our faith in JASCAP and the objectives that we set out to achieve.
Our first big break came in 2001, when the Tata Memorial Hospital at Parel, Mumbai offered
to house us in the hospital premises and despite the space crunch they faced, allowed us to
set-up a small book counter where we could distribute literature on cancer.
Initially, all this literature was only available in English, but gradually over the years, we have
managed to have a bulk of it translated in regional languages, namely Hindi, Marathi, Gujarati,
Bengali, Kannada, Tamil and Malayalam. This, we felt was important, as most patients at Tata
Memorial land up from different parts of the country. Since we could not afford the fees
of professional translators, we sought help from volunteers in crossing this major linguistic
barrier.
The cost of printing was another big challenge confronting us, besides editing the raw material,
type-setting and proof-reading – but with God’s grace, help kept pouring in from unexpected
quarters and we managed to remain afloat. By fighting to keep our costs low, we have been
able to offer our booklets at extremely nominal prices to needy patients and their families.
Since we cannot order a huge print run – because our booklets have to be routinely updated
to keep pace with the new medical breakthroughs – we often struggle to keep a tight leash on
our costs, without sacrificing the value we bring to our readers. We take inspiration from the
millions of other Indians who are excellent in getting the biggest bang for their buck!
Small wonder that until 2012, JASCAP has distributed over 200,000 booklets. We also offer
video CDs and in 2011 we crossed another milestone in launching our website www.jascap.org,
from where our booklets can be downloaded free-of-cost in different languages.
At times, we also arrange financial assistance to poor cancer patients by putting them in
touch with various funding organizations that are doing a yeoman’s job in this area. As a small
unit, we are nimble and try and respond to patients’ needs promptly. We also do one-on-

65

one counseling with cancer patients and their families. We have trained counselors amongst
our staff and volunteers for this role. To be honest, the role is more of a LISTENER than a
COUNSELLOR, but we have figured out that listening with empathy is what patients and
their families require the most during this difficult hour. In rare circumstances, we also arrange
peer and expert counseling for patients and their caregivers. The literature that we distribute
covers information-gaps in the following areas of interest:
99 Sources of financial assistance for needy cancer patients
99 Accommodation options available in Mumbai for patients coming from different
parts of the country
99 Location of free or inexpensive eateries for the accompanying caregivers
99 Assistance in paper work relating to admission into Tata Memorial Hospital
99 Navigating through the various services that Tata Memorial Hospital offers
99 Emotional support avenues
Although a lot has been achieved, we at JASCAP realize that a lot remains undone as well.We
would, for instance, like to set-up a patient helpline with a toll free number. The helpline staff
could provide information about:
99 Other hospitals in Mumbai that treat cancer patients
99 Consultants and oncologists in private practice
99 Diagnostic centers for running pathological tests for which there is a long queue at
Tata Memorial
99 Medical stores that deal exclusively in oncology drugs, provisions and prostheses
99 Individuals and organizations offering financial assistance to cancer patients
99 Affordable accommodation options
99 Blood banks and blood donors
99 Rehabilitation centers for after-care, once the treatment is over.
99 Organizations helping in gainful employment of cancer survivors
99 Hospices for terminally-ill patients
99 Dealers in medical and supportive equipment such as beds, walkers, bedpans,
oxygen cylinders and so on
The road is long. But, we at JASCAP are determined to soldier on.

66

12. How to be Your Own Advocate

In order to get the best treatment for yourself, you must change
from being a passive participant to becoming an active advocate for
your own health

M

ost patients in India put their doctors on a high pedestal, thus opening themselves
to abuse in case they happen to fall into the hands of incompetent or unscrupulous
doctors. The only way to prevent this from happening is to either assume full
responsibility for your own care, or assign it to someone whom you completely trust, such
as a patient-advocate. That said, there’s a lot you can do for yourself and you don’t need
to outsource advocacy to someone else every time you see your doctor. You just need to
master a set of skills, so that you are empowered to act as your personal patient advocate.
For starters, here are some resources that you might find useful:

Book Resources
Hundreds of Life-Saving Facts, Action Steps and Strategies You Need to Know by Dr. Julia A. Hallisy
offers sensible advice on how to lower your risk of being the victim of a medical mistake,
get a second opinion, and safeguard against
Did You Know?
hospital-borne infections.
Health Power 101: The Complete Guide to
Patient Empowerment by Jeffrey Brown will
teach you about common health problems,
medical tests, and the importance of the
early detection of chronic diseases.

ff If patients are not involved in their own
healthcare, they are increasing their risk
of :

Online Resources

ff being overcharged by billing staff;

Every Patient’s Advocate: (www. trishatorrey.
com) provides information on how to
receive better care

ff wasting money on duplicate tests?

ff being harmed by potentially life
threatening oversights by the medical
staff;
ff being short changed and underpaid by
insurance companies; and

67

The Empowered Patient: (www. theempoweredpatient.com) gives tips on how to effectively
communicate with medical staff-members.
Let’s take the case of Prashant S Dhananka, the Infosys employee who spiritedly argued his
case from a wheelchair after his botched up chest surgery 19 years ago that left him paralysed
from the waist down.The compensation awarded to him by the Supreme Court was less than
the Rs 7 crore he sought, but the highest paid in India to date - Rs 1 crore. During his trial
the software engineer gave vivid details
of the gross negligence he suffered at
Should I Become an Expert Patient or
Nizam’s Institute of Medical Sciences
Hire an Expert Patient Advocate?
(NIMS), Hyderabad. You may like to go
through the details of this case (www. Dave deBronkart’s story makes for interesting
reading. He was diagnosed with kidney cancer
indiankanoon.org/doc/57638/) in order
and was given less than six months to live.
to understand how and why sometimes
“I found myself tumbling down a rabbit hole
things can go so grossly wrong between
toward my death,” he told National Post. Later
a patient and a doctor.
deBronkart’s doctor referred him to a patient
forum on the Internet, where members told
The ABC of doctor-patient talk
him about a new treatment — high-dosage
The first skill you need to learn is how to
interleukin — that many hospitals do not
talk to your doctor, so that he listens to
provide, but that in a minority of cases can
what you have to say. Experts recommend
treat his type of malignancy.
the ‘ABC’ model for patients if you need
to be your own advocate, where:
He hunted down a specialist who treated him
A stands for Asking the right questions
of the doctors who are treating you;
B is for Being prepared, so you are
armed with knowledge about the disease
afflicting you; and
C is voicing your Concerns to the doctor,
so he can address them.
In order to save your time, and your
doctor’s,the PatientAdvocate Foundation
(PAF) in the US encourages patients to
go to a doctor with a prepared list of
questions such as:

with this, and the treatment worked wonders.
Mr. deBronkart realised that the established
system of propagating research — in which
studies are submitted to a journal, reviewed
by peers and finally published in a process that
can take a year or more — could not keep
up with a deluge of scientific developments
in medicine. “What I found from the patient
community was better, more up to date
and medically more sophisticated than the
information that most oncologists have,” Mr.
deBronkart said.
(Source: http://news.nationalpost.com/2011/05/14/the-expertpatient-who-knows-best-the-doctor-or-the-patient/)

68

12. How to be Your Own Advocate
99 What is the goal of my treatment?
99 What are my treatment options?
99 What is your experience with the treatment of this disease?
99 How will I receive this treatment?
99 What will it cost me?
At times, if the doctor, for whatever reasons, is not very forthcoming with the information that
you seek, it helps to be a little assertive. It’s important to trust your doctor - but you need to
verify his information is reliable. You can validate it by checking with other medical experts,
and seeking out patient support groups and expert patients.
Share your health history. It’s important to be
honest with your doctor. Inform her about all
the treatment protocols that you are following,
including alternative treatment plans. Have
you checked out www.healthvault.com? Open a
secure personal account on the site to organise
your medical records, imaging films, test results,
doctor’s appointments, and even your children’s
immunisation records. You can save and store
your medical history, your past and current
medications, allergies, family history, and daily
blood pressure and blood sugar readings.

If You Don’t Tell The Doctor That
You Are In Pain, Who Will?
ff Never act brave.
ff Never try to minimize the pain or
symptoms you are experiencing.
ff Don’t for get to report the
bad parts of your day or the
inconvenience your illness is
causing you.

When in doubt, seek a second (or third) opinion. Also, don’t hesitate to negotiate your final
medical bill. If you are financially strapped, many doctors offer a discount on their consultation
fee.
In everything that you do, remember that you do not need to be aggressive. There is a world
of a difference between being assertive and being aggressive. While the first approach will get
you quick results, the second will only serve to antagonise your doctor.
You will find valuable information on improving doctor-patient communication from my blog
entries listed below:
Dr.Malpani’s Blog: How to talk so your doctor will listen (blog.drmalpani.com/2012/09/how-to-talkso-your-doctor-will-listen.html)

69

Where I talk about cultivating a source inside the doctor’s clinic, seeking other references, and
the importance of taking a friend along to your appointment with the doctor.
Dr.Malpani’s Blog: How to talk so your doctor honest (blog.drmalpani.com/2012/11/how-to-keepyour-doctor-honest.html)
Ask for video documentation of any surgical intervention and if your doctor is reluctant to
share this information, this is a red flag which should cause concern.
Dr.Malpani’s Blog: Why patients need to SPEAK UP! (blog.drmalpani.com/2012/08/why-patientsneed-to-speak-up.html)
The more the questions you ask about your treatment, the more careful your doctor will be
about how he treats you. Talking builds trust and leads to better results, quality, safety, and
satisfaction.
Dr.Malpani’s Blog: How to talk to your doctor SAFELY (blog.drmalpani.com/2005/10/how-to-talk-toyour-doctor-safely.html):
SAFE is an easy to remember acronym, which will help you communicate your fears and
expectations to your doctor, so he can address them. Here S stands for your story, A for
assessments, F for fears and E for expectations.

70

13. Researching and Becoming an Expert

You must be actively involved in making decisions about your own body.
If you don’t understand the medical gobbledygook, the fault is not yours -it’s the doctor’s

E

ven the most complicated concept
in medical science can be simplified
enough for a layman to understand it.
It is your doctor’s responsibility to explain
your health problem and your treatment
choices to you in simple terms. This will
help you to make an informed decision
about your treatment and this is important
for obtaining patient-centered healthcare.
A good doctor must respect your
intelligence, your desire to learn about
your medical condition and your ability to
understand what procedures he intends
to carry out on you, so that you both can
work together as a team in order to find
the best therapy available for you. If your
doctor doesn’t have the time or inclination
to do so, or if your communication with
your doctor is like a one-way street, then
this is a red flag that you need to find a new
doctor who is willing to actively engage you
in your medical care. If this is not possible,
consider hiring a patient-advocate who will
help you make sense of your illness.

What Information should Your
Medical Records Contain?
ff Unique identifiers such as your full
name, ID proof etc.
ff Demographic data including your
address, phone number(s), and email
address.
ff Known medical conditions, allergies,
drug/alcohol/smoking habits
ff Your doctor’s records of your visits,
diagnoses, treatments, diagnostic test
results, prescriptions, and referrals to
other doctors.
ff The health of your immediate family
members, particularly parents and
siblings, and whether there is a history of
certain diseases.
ff Billing and payment information, such as
the party responsible for payment, health
insurer, and primary beneficiary.

71

Medical science rarely has straight forward solutions, and what works for one person may not
work for another. Every person is different, and everyone has different preferences. There are
very few cut-and-dried protocols in medicine which can be universally applied to everyone.
This means treatment of many diseases demands a patient-tailored protocol, depending upon
your individual circumstances and wishes.
Good doctors encourage your participation in your healthcare, so that you can make an
informed decision about what is right for you, according to your personal circumstances,
beliefs and priorities. For this to happen, you should also strive to gain knowledge about
your health problem. Being passive and dependent upon your health care provider for all
your treatment decisions will not help you get the best medical care. You must do your own
homework to find out what your options are, so that you can make a well-informed decision,
and select a treatment protocol that you are comfortable with; which will improve your
quality of life and maximise your chances of a good outcome.
The best-place to look for information is the internet, but not every site is trustworthy.
It’s a good place to start, although not a very good place to end your search for the right
information. It is important to double-check the online information with your patient advocate,
and consult reliable government health web-sites because these are regularly updated with
current information.The US and the UK governments have been leaders in the field, and their
sites (www.medlineplus.gov/ and www.nhsdirect.nhs.uk/) are very useful - please bookmark them.
The Indian government has sadly been a laggard in this field, but if you are looking for India
specific information, try the Ministry of Health and Family Welfare (www.mohfw.nic.in/), The
Department of Health Research (www.dhr.gov.in/), and The Indian Council of Medical Research
(www.icmr.nic.in/).
When you are in hospital, here is what you need to know about your medical records: Make
sure you have copies of all your medical records- they are legally your property. You can
give the doctor photocopies of your original reports for his files but keep the originals with
you. They are worth their weight in gold. Also make sure that you understand what’s in your
medical records- you must be able to make sense of your doctor’s hieroglyphics,, so you can
explain your diagnosis and treatment to another doctor, if you need to take a second opinion.
Read up on your condition: Read as much as you can about your problem. A good doctor
will arm you with printed material to read at home.
Read up on the doctor: You have the right to know the name of the doctor(s) treating you,
their professional qualification, their special interests and their respective track records. If this
information is inaccessible or not shared on the hospital website, you may need to dig deeper.

72

13. Researching and Becoming an Expert
If you think you are not receiving the information or the level of care that you are entitled to,
you can demand a transfer to another facility.
Additionally, you have the right to be informed of the possible financial implications of a
proposed treatment plan at the time of admission. If there is a change in the medical condition
or treatment protocol, and your costs are likely to rise, you should be told about this in
advance and not be presented with an inflated bill later. You can accept or refuse any part of
your treatment, after being informed of its risks, benefits and likely consequences.
Remember that you are always free to seek discharge against medical advice, if your
dissatisfaction with the doctor or the hospital is extreme.You may be asked to sign a ’Discharge
against Medical Advice (AMA)’ form, but you can’t be forced to stay in the hospital against your
wishes - and if the hospital tries to do this (for example, by insisting that you have to clear all
your hospital bills before they will let you leave), they are committing a criminal offense).

73

SECTION 4

THE ROLE
OF PATIENTADVOCATES IN
HOSPITALS

14. How Advocates Can Build Trust between
Patients, Doctors and Hospitals

Patient-advocates employed by hospitals need to be trained in giving the
patient what he is looking for

T

imes are changing, and hospitals, doctors
and patients are changing too. As patients
have become more savvy and demanding,
there is a need for patient-advocates to fill in
the service gaps that hospitals and doctors leave.
While they may be great at performing complex
surgical procedures, doctors are often not
very good at providing tender loving care - and
patients want to be hand-held when they are ill.
This is something that patient-advocates can do
efficiently.

A Patient Has the Right to
Select Her Advocate
Sunita lives in an old-age home in
Gurgaon, Delhi. Of late, her worsening
vision and unsteady walk have
meant that she spends more of her
time indoors. Her daughter Kamla
visits her a few times, every week.
Kamla also takes her mother out for
doctors’ appointments. During her
first appointment, Sunita told her
doctor, “Please communicate with my
daughter on all health-related matters.
My daughter makes all those decisions
and I like it that way. She explains things
in a way I can understand and, after all,
she’s the one who takes me around to
all of my tests and appointments.

Today, when hospitals advertise, they no longer
flaunt their fancy buildings. Instead, they have
photos of their diva brand name star surgeons,
dressed in crisp white coats and stethoscopes,
the idea being to entice patients with their pool
of top medical experts. After all, healthcare is a
service and hospitals want to position themselves
as caring, credible service providers. Patients want
to ensure that they get the best medical advice
from the top expert in the field, in a safe, professionally-run hospital environment. As patients
are becoming more aware, they are asserting their rights, and have begun to expect doctors
and hospitals to take an interest in their well-being - and are willing to pay to get top-notch
services.

77

The onus is now on doctors and their medical teams to ensure that they provide premium
quality service, so they can build a relationship of trust with their patients. Doctors need to
accept that patients are consumers who can get turned off by hospitals that offer poor-quality
service - and go to the competing five-star hospital down the road.
Typically, hospitals are unfriendly places, which are designed for doctors and nurses - not for
patients. Often the left hand does not know what the right hand is doing; there is little
coordination; and patients are lost and confused. However, for patients to have a positive
experience in the hospital, it’s important that they feel heard, understood and respected. One
simple way patient advocates can do this is by collating all medical updates and providing a
summary daily report card on their state of health. A tech-savvy patient advocate can set-up
an online patient portal, where family members can track the progress of the patient. Using
Skype, the patient (or the advocate or the relatives in the hospital) can hold video conferences
with friends and family members, wherever they may be located.
If you are not so ambitious, you can setup a simple
Facebook page for the duration of your patient’s
hospital stay, and this can serve as a very valuable
online channel which friends and relatives can
use to stay in touch; remain updated; and provide
support, even if remotely. All you need to utilise
this kind of a service is a laptop. This can be
especially useful for critically-ill patients and their
families. By providing such innovative, value-added
features, you can establish yourself as a credible,
state-of-the-art healthcare brand.

Why hospitals are employing patient advocates

An effective patient-physician
relationship creates:
ff Mutual understanding between
patient and physician, so both
know what to expect from each
other.
ff A powerful resource for healing
and comforting
ff A learning resource for both
parties
ff A framework for maintaining
open discussion, even when there
is uncertainty about the medical
outcome.

Given the great value which patient advocates
can add, forward thinking hospital CEOs are now
investing in creating a team of patient advocates Good doctors act as advocates for
that patients can turn to in their time of need. their patients all the time – and are
Patient advocates report directly to the CEO happy to treat patient advocates as
and act as ombudsmen. Smart CEOs understand partners.
the value of improving the patient experience
and know that patient advocates can play an
important role in both monitoring this and in improving it. From that prominent and protected

78

14. How Advocates Can Build Trust between Patients, Doctors and Hospitals
vantage point, patient advocates spearhead efforts to improve care by scrutinizing untoward
patient experiences and advocating timely remedies. Patient advocates are well-connected
within the hospital, and are uniquely qualified to inform patients and their families of other
services available to them while they are hospitalized, whether in terms of accessing additional
health information at an onsite consumer health library, the availability of spiritual support
services, or requesting a massage on your behalf. Patient advocates are very effective brand
ambassadors, which show that the hospital is a caring service provider who puts patients first.
Some hospitals assign a patient advocate to each patient at the time of admission. This can be
very comforting for a patient who now has a trusted guide he can turn to in times of need.
Patient advocates employed by hospitals need to be trained in giving the patient what he
is looking for. It could be information, excellent service, compassionate staff, or technical
expertise. Let your patient-advocate forge partnerships that you can leverage as a service
provider. Even though their salary is being paid by the hospital, their primary job is to delight
patients.
Good patient advocates share hospital resources with patients freely and in a
meaningful way. They must understand that their role is to give patients time and a listening
ear.
They go the extra mile in reaching out to patients, especially during an emergency. A
patient advocate can generate a lot of goodwill for the hospital by delighting patients !
The biggest worry an enlightened hospital CEO has is how to manage unhappy patients. Many
patients may experience difficulties during their hospital stay, but are scared to articulate these.
They have concerns that are never communicated because they are fearful of repercussions if
they complain.They are afraid that the staff will label them as a complainer and treat them badly.
Hospitalization and illness can be very stressful for the patient and it’s common to experience
emotions that may make it difficult for patients to express their needs and concerns.They are
scared that they might break down and cry; lose their temper with a hospital staff member;
feel intimidated and not say what they intended to; or be labeled as difficult, which is why they
are scared to speak up.
They end up bottling their complaints, but this resentment can build up, and can be expressed
as violence against the hospital staff, in case the patient suffers from a complication, or dies.
Patients need someone other than the hospital staff to speak for them, which is where the
patient advocate comes in. Bringing up concerns to the patient advocate is not viewed as
being complaining or making waves – it is viewed as an opportunity to provide you with
support, encouragement, and assistance.

79

Patient advocates are on call 24/7 - and their goal is to provide you and your family with the
best possible experience during the hospital stay. A patient advocate is in hospital to help
you – she is on your side and her job is to make sure you are happy, so make the most of her
services.

80

15. Family Physicians as Patient Advocates

Dr Jaya Bajaj
Advocacy is an important component of the doctor-patient relationship.
Family physicians may be a natural choice as patient advocates because of
the trust they have built over a long time

I

grew up in a small town and had the privilege of experiencing the kindness of our family
doctor. My siblings and I received all our vaccinations at his clinic and he would graciously
make home-calls when one of my grandparents got sick. I remember him sitting next to
me, reassuring that “everything will be alright” when I got sick during my HSC board exams.
When my grandfather developed heart disease, he helped my father arrange medical care for
him in the nearest town. He was always available for answering our questions during the long
hospitalization of my grandfather. He even travelled to the hospital when my grandfather was
getting discharged and discussed the prognosis, discharge instructions; medications etc. with
the consulting cardiologist that he then proceeded to explain to my father in simple terms.
Any surprise that he took care of three generations in our family?
These are the kinds of family physicians we had until a few decades ago. “patient advocacy”
and “patient-centred care” were not the terms I remember being spoken then, but the family
physician always put the patient’s interests first. However the last few decades have brought
significant changes in medical care. The introduction of powerful medications, sophisticated
imaging procedures, and expensive diagnostic techniques has meant that healthcare delivery
has become a very complex process. Patients don’t always consult family physicians first and
many want a specialist consultation even for minor ailments. The fragmentation in healthcare
has actually led to a drop in the quality of care and there is an increasing need for patient
advocates to protect the patient’s best interests and ensure the delivery of safe care. This
chapter looks at the role of family physicians as patient advocates.

81

My favourite description of family physicians is by Dr. Gayle Stephens, “Family physicians know
their patients, know their patients’ families, know their practices, and know themselves.”
Stephens describes patient management as “the quintessential skill of clinical practice” and
“the area of knowledge unique to family physicians.” He distinguishes management from
treatment, saying managing implies, “alleviating most effectively the total impact of illness upon
that person.”
Family physicians are usually the first point of contact during an illness. Unlike other medical
specialists, who focus on specific diseases or organ systems, family physicians specialize in seeing
patients who may present with multiple problems that are not slotted into a particular system.
Ideally, family doctors have a long-standing relationship with their patients and therefore have
a sound basis of understanding the patient’s perspectives and needs, so they can offer options
that meet their best interests.They have a holistic perspective, because they are taught to put
the patient first. Globally, healthcare systems that are considered to provide the best quality
care are the ones with strong primary care, driven by family physicians.

When should family doctors act as patient advocates?
Always!
Recently, one of my elderly relatives had to be hospitalized. In his mid 50s, he had been in
good health except for mild hypertension (high blood pressure) that was well controlled
with medicine. He had several episodes of diarrhoea overnight which he attributed to dining
outside. He had his morning tea and breakfast and took his medication as he always does.
Yet feeling sick, he decided to take the day off, something he rarely did in the last couple of
decades, and never for health reasons.
This surprised his spouse as well as concerned her.A couple of hours later she noticed that he
looked pale and was unable to stay awake. She rushed him to a nearby hospital, where he was
diagnosed with acute renal (kidney) failure, atrial fibrillation (irregular heartbeat), hypotension
(low blood pressure as a result of diarrhoea), cellulitis (soft tissue infection) in the leg and
electrolyte abnormalities (low sodium) leading to confusion. He was given intravenous fluids
and was examined by an internist and a surgeon, who recommended that he be moved to a
tertiary care centre because of the complexity of his illness. He was immediately shifted to a
tertiary care centre in a metropolitan city. Needless to say, the family was in a state of shock
over the developments of the past 24 hours.
At the tertiary care centre, my relative was examined by an army of healthcare professionals:
internist, surgeon, and cardiologist, nutritionist, physiotherapist, wound care specialists etc. His
blood pressure medicine was stopped and he had to be started on a new set of medicines,
82

15. Family Physicians as Patient Advocates
mainly antibiotics, medicine to regulate his heart rate, blood thinner, antacids, multivitamins
etc. Over the next two days, when his infection subsided, he was no longer confused, yet he
complained of a persistent headache.
After multiple requests, the nurse came around to check his BP which was quite high as
the medical team had forgotten to restart his BP medicine. He was discharged home with
half a dozen medicines and instructions to follow-up with three doctors who had seen him
during his hospitalization. In retrospect, he could have been spared this ordeal, had his family
physician been a part of the medical team. He would have added value by:

Eliminating the medical jargon
Healthcare has a language of its own. Many times healthcare professionals don’t realize how
insidiously medical acronyms become a part of their normal lingo. A family doctor who is
aware of his patient’s health literacy can explain the diagnoses in a language that the patient
can understand, and prepare the patient for the next course of action. An important part of
this role is helping to curate and interpret the almost overwhelming amount of information
available to patients today, thus helping them make intelligent personal choices for their own
care.

Strengthening the diagnostic process
Healthcare has become more complex and fragmented than ever. A family physician can
facilitate diagnoses in a timely manner by prioritizing problems. He can educate patients about
the best evidence-based treatments available, helping them to make informed decisions about
their care. For instance, in the case cited above, the family physician could have picked up the
warning signs of low blood pressure and helped coordinate the future course of action.

Communicating the diagnosis to the family
If the patient so desires, the family doctor can explain to the patient’s family or care-givers
details about the disease and the available treatment options. He can help patient select the
best treatment options available by exploring the resources and constraints of the patient and
the care-givers.

Offering resources to the patient and family
A serious medical illness can be terrifying and disruptive to the patient, as well as the patient’s
family and care-givers.A family doctor can help patient and family members tap into community
resources.These could be local support groups, expert patients, health libraries, reliable online

83

information on patient’s illness, and information on financial grants, as well as information on
centers offering such resources.

Researching and choosing appropriate a healthcare team
Family doctors can help patients find the best possible healthcare team for their needs, by
keeping in mind the patient’s personal preferences and beliefs.

Exploring alternate treatment options with patients
Patients are often the first ones to discover “new treatment options” they want to explore.
Sometimes, patients are not able to discuss these with the specialist, simply because of a lack
of access to the specialist, many of whom are unapproachable and inaccessible.A family doctor
can help the patient sift through relevant information and coach the patient on effective ways
of sharing the information with the specialist. In the case of my relative, the patient was offered
warfarin as a blood thinner for his heart condition. What the specialist was not aware of was
that the patient, who lived in a small village, would not be able to get the basic monthly lab
tests that are important for monitoring patients on warfarin. A family physician who had this
contextual information on the patient, would have brought this to the specialist’s attention,
and suggested an alternate course of action.

Ensuring continuity of care
An engaged patient-doctor team is needed to ensure continuity of care. A huge proportion of
medical errors can be attributed to communication breakdowns because of healthcare silos.A
family doctor can function as a team leader, coordinating care between patient, family members,
care-givers and multidisciplinary healthcare providers, thus ensuring clear communication
and continuity of care. This is very important to providing patient-centered care. Sadly, most
medical students are never exposed to these concepts during their medical education.

84

16. The Patient Advocate as Patient Guardian

Donald W. Kemper and David Foster
Patient advocates act as guardian angels when you are in hospital

T

oo many modern hospitals have become intolerably complex. It is not uncommon for
30 or more health professionals to provide care to the same patient over a threeday hospital stay. Often three or more clinicians will be in the patient’s room at the
same time but for different reasons (and there may be even more, for example, when there
are shift changes; older patients, who may have multiple medical problems, will often need
many different specialists; and in hospitals attached to medical schools, who have to teach
professionals in training).
Even with the best technology available to coordinate care, complexity is a breeding ground
for medical errors, miscommunications and contradictory orders. Within this complex maze
of care, only three elements of the mix are reliably constant: the patient, the medical record
and, if the patient is lucky, the guardian. Because the patient is often medicated and the medical
record is always mute and often disjointed, the only clear and steady voice of continuity in the
patient’s room is that of the patient guardian.

Patients often feel helpless
There are three main reasons why hospital patients feel lost and helpless:
99 Hospital patients are generally sick, injured, under stress or maybe recovering from
surgery. They are not at their best, mentally or physically. Fatigue and confusion
commonly cause patients to feel lost and helpless.
99 There is a learned helplessness about being a patient. A patient is expected to be
passive. The doctor gives the “orders.” The medical jargon is unfamiliar. The building
layout is often confusing. And the patient is expected to ask permission before doing
anything.

85

99 The medications that patients are given often cause drowsiness, confusion and
disorientation. Whether the drug effect is mild or severe, patients under medication
are not able to think as clearly as they normally would.

The “Telephone Game”
Have you ever played the game “Telephone”? One person begins by whispering a long sentence
to the person next to him—just once with no repeats. Then that person whispers what she
thought she heard to the next person, and so on, until everyone has heard and repeated the
message.Then the final message is compared to the original message. Most of the time, there’s
a hilarious disconnect between the beginning and the end. Much the same can happen in a
hospital, but without the fun and games.
A friend of ours got caught up in a round of repeated misinformation during her hospital stay.
She was scheduled for hip replacement surgery. At the pre-op appointment, she was asked
if she had any drug allergies. She responded that she didn’t have any allergies but she was
sensitive to opioids. She said she could take them, and they worked well, if an anti-nausea drug
was also given. The pre-op nurse made a note in the chart.
During the prep period right before surgery, the prep nurse said, “It says in your chart you’re
allergic to opioids.” Our friend said, “No, they work well for me if I also get an anti-nausea
drug with them.”
In the hospital room after the surgery, the attending nurse said,“Since you’re allergic to opioids,
we’re giving you Tylenol.” The patient said, “No, I’m not allergic. Opioids really help control
pain for me. I just need to take them with an anti-nausea medication because they make me
nauseous.” The patient’s spouse heard this exchange three different times while he sat with
his wife in her room. But the message just didn’t get through—the circuit of misinformation
kept getting repeated.
It wasn’t until 4:00 in the morning after the surgery, when the patient was exhausted and crying
for pain relief, that she finally was given dilaudid, an opioid pain medication, and her requested
anti-emetic.This episode played out the telephone game in which the wrong information kept
getting repeated despite the patient’s attempts to correct it. If the spouse had been included
in the patient guardian role, he would have been able to save his wife the painful experience.
Good doctors aren’t enough: Everyone hopes his or her doctor will be above average.We
want our doctor to be technically competent, be a diagnostic genius and have a caring bedside
manner. Even if that were true for every doctor, it would not be enough. In the hospital setting,
your doctor is often not nearby. Your doctor cannot be the constant, caring guardian angel
86

you need to protect you from error. There are too many others providing care whom your
doctor may not even meet. Good doctors are important, and if yours is better than average,
count yourself lucky. But even with the best of doctors, once he or she is out of the room,
you can still be given the wrong medication; be asked to walk when you shouldn’t; or be given
an infection by someone who did not wash his hands.
Many medical errors are less about how good your doctor is and more about how good the
system is in coordinating your care among the many professionals who are there to help you.

Medical mistakes do happen
Primum non nocere is Latin for “first, do no harm.” The principle is taught in every medical
school. Its prominence in medical education foretells the reality that mistakes will happen
unless you are extremely careful to prevent them. In the U.S., one-third of hospital patients
are subject to medical errors, resulting in about seven percent who experience permanent harm
or death, as per one news report.

Mistakes will happen—but they don’t have to happen to you
The job of the patient guardian is to help the care team to prevent mistakes or to correct
them before they harm the patient. Mistakes are preventable, and many can be prevented by
the actions of the patient guardian.
There are four main duties of a patient guardian: infection control, medication monitoring,
watching for changed symptoms and shared decision making. Each duty is targeted at preventing
a different type of medical mistake.
Infection control involves the guardian’s insistence on the staff washing their hands every
time; ensuring the administration of peri-operative antibiotics before, during and after surgery;
following appropriate wound care rules; and keeping visitors with coughs, colds and fever far
away.
Medication monitoring involves paying attention to what the pills look like and when they are
given, plus asking questions if anything changes.
Watching for complications or changes in the patient’s condition and pointing out any changes
to the right staff member can be life-saving.
Shared decision making involves always asking if there are options – and very importantly, if
there is the choice to do nothing. Often, watchful waiting and attentive inactivity are sensible
choices. The guardian needs to ask - what would happen if the patient delayed or avoided a
87

recommended treatment or test. Many treatment decisions are “preference-sensitive,” so
the right decision depends on the patient’s preference. The guardian can help to make that
preference heard.

Preparing to be a patient guardian
There are a few things a patient guardian can do before or at the start of a hospital stay:
99 Interview the patient about his or her wishes, and ask for copies of the patient’s
advance directives for use if needed.
99 Get written permission from the patient to see his or her medical records. In the
U.S., this may require a privacy release document.
99 Record the patient’s baseline blood pressure, pulse and other vital signs for
comparison later.
99 Ask the main doctor what complications to look for, and record phone numbers for
whom to call if these symptoms appear.
99 Keep copies of key parts of the medical record with you. This is critical when
the patient is transferred from one facility to another. Sometimes the patient or
guardian’s copy or download of records to a smart phone can be very useful to the
doctors at the new facility because the more formal transfer of information can
consume precious time.
99 Ask to see the quality measures for the type of care the patient is expecting to
receive. The National Quality Forum website allows you to search quality measures
for specific treatments. (www.qualityforum.org/Qps/)
99 Remember the guardian’s role is primarily a medical one – to ensure the patient
gets the best medical care.
Of course a guardian can be a friend and supporter too. But performing the role of a guardian
when the situation calls for it – and being willing to be assertive when needed, is the one
function that will make the biggest difference.

Getting Help from the Clinical Record
Patient guardians, with the patient’s permission, are increasingly gaining access to the patient’s
chart and medical records. This is an important tool to have.
Many providers offer patient-facing applications or website access to medical records through
standards such as the Blue Button. (www.bluebuttondata.org/)

88

Laxmi is a cancer patient at a hospital clinic that allows patients (and other authorized individuals)
to download medical records onto a smart phone. Her husband did just that.When Laxmi had
a stroke and was transported to a different hospital, the emergency physicians there were not
able to access Laxmi’s medical records at the first hospital. After repeated attempts to get the
records, Laxmi’s husband simply pulled them up on his smart phone and showed them to the
emergency room doctors, who used the lab results from the first hospital to determine the
right course of treatment.

Be loud enough to save a life
No one enjoys being a pest. We particularly don’t want our doctors to think we are rude,
ungrateful or “problem” patients. On the other hand, holding back when you know things are
not right can prevent you from saving the life of someone you love.
Lewis Blackman was a previously healthy, highly promising 15-year-old boy who was three
days past what was supposed to be a routine surgery to prevent future problems. His pain
had been controllable after the surgery, but on the morning of the third day it rose to “a 5 on
a scale of 5”—and then it got worse. He was on a pediatric cancer unit because the surgery
unit was full. It was the weekend, and the surgeons had turned his care over to residents.
In the afternoon he was even worse. The nurse wrote in the chart, “Gas pains—patient needs
to move around.” In spite of Lewis’s protests, Helen, his mother, and the nurse helped him
walk around the ward. He seemed weaker and weaker to Helen.The nurse thought Lewis was
just feeling sorry for himself.
Helen asked for an experienced doctor to come and see Lewis. Instead, they sent the chief
resident, but they didn’t tell her he was still in training. She relaxed because he seemed
confident and she thought he was a veteran. He was not. Lewis’s pain was unbearable. He was
sweating and his temperature had dropped.
On the morning of the fourth day, the nurses could not measure his blood pressure. They
thought the equipment must be broken. Lewis’s speech became slurred. He said, very slowly
but quite audibly, “It’s going black.”
Only then did the chief resident call for a full “code alert,” and veteran doctors arrived. But it
was too late. Lewis was pronounced dead at 1:23 p.m. that afternoon. An autopsy determined
that Lewis’s abdomen held nearly 3 liters of blood caused by the hole that his pain medicine
had eaten in his upper intestine. Lewis had slowly bled to death, and no one but Helen had
paid attention to the signs.

89

The full story is here: www.lewisblackman.net/
Our medical system should never allow this to happen again. And yet, we know that it will. If
you are a patient guardian, there is no action you might take that is too rude or too insistent
if it results in possibly saving the life of your child or your loved one.
Many hospitals are implementing a family-activated “code” to provide an extra layer of patient
safety. If a patient guardian sees that a patient’s health is changing for the worse and the
clinical team is not responding, the guardian can call a “code” by dialing a phone number, and
a response team will be activated to address the issue. (Code HELP at www.harrisonmedical.org/
file_viewer.php?id=6115)
Hospitals are not as safe as we wish they were—not nearly as safe. No one believes that a
patient should need a patient guardian. But unfortunately, they do. No matter who you are and
where you are, having a patient guardian to help protect you in the hospital is a good idea.
Hospitals, even the famous ones, are so very complex that as soon as they work to eliminate
errors in one area, new problems spring up in another. Of the three constants in the room
(the patient, the record and the guardian), the patient guardian is quite often in the best
position to prevent errors or to spot them early on.

90

17. Patient Advocates in Biomedical Research

Manju Padmasekar
In 1987, a group of angry HIV positive patients came together to set-up
ACT UP, an outfit with the mandate for fighting for the basic human rights
of AIDS patients.This marked the start of a long and lonely battle

C

linical research allows doctors and scientists to test and develop new medical
diagnostic tools and treatments, so they can discover better ways of treating deadly
diseases. Advocacy is required as much in clinical research as it’s required in primary
care, because the subjects of research are the patients themselves.While biomedical research
used to be the monopoly of scientists and clinicians, patient advocates started overseeing
clinical trials in order to guard the rights of patients. The need arose when it was discovered
that patients who participate in clinical trials are often in danger of being exploited by
unscrupulous researchers who may be so focussed on their research objective and advancing
their own careers, that they may forget that their true goal is to reduce the suffering of the
patients. There are scores of real life horror stories of clinical trials gone awry, where medical
ethics were violated and trial participants harmed knowingly with impunity.
In these cases, patient advocates have played a key role in protecting patient rights during
clinical trials by:
99 Educating patients about a clinical trial’s potential benefits and harm
99 Making sure that the information provided to the patient is reliable
99 Confirming subjects have provided informed consent
99 Promoting patient safety and confidentiality
99 Identifying and addressing potential ethical issues in the trial

91

Once their interest and involvement in this discipline rose, patient advocates began to realise
that they needed to take a much more active role in biomedical research. Their focus is now
on making the research agenda more patient-friendly. This they do by sharing the patient’s
perspectives with researchers and increasing their clout by:
99 Lobbying with the legislature to increase
funding for research on specific diseases
99 Acting as a connecting bridge between
scientists and society, thus helping
researchers keep patients’ needs in
mind, rather than furthering their
narrow professional agendas
99 Helping to design clinical trials which
were meaningful and practical
99 Expanding opportunities for patients to
participate in clinical trials
99 Working with media channels to raise
awareness about a particular disease

Philadelphia
This 1993 American film, draws
heavily from the real life workplace
discrimination faced by attorneys
Geoffrey Bowers and Clarence B.
Cain, who got dismissed by their law
firms once their HIV-status came to be
known at office. Philadelphia was one
of the first mainstream Hollywood
films to acknowledge HIV/AIDS,
homosexuality, and homophobia. This
is an inspiring film, and demonstrates
what impact the media can have in
influencing public perception of a
disease, by giving patients a public
platform to articulate their views.

An excellent example of how empowered patient
advocates can influence the biomedical research
community and policy makers to catalyse change
is the HIV/ AIDS advocacy group - AIDS Coalition
to Unleash Power (ACT UP). This is an international direct action advocacy group, whose
motto is Silence = Death. This is what advocacy is about - give voice to the disempowered.
When AIDS was discovered nearly four decades ago, a diagnosis of AIDS was like pronouncing
a death sentence on the patient. AIDS became the leading cause of death in US men aged
25 to 44, and there was a lot of stigma attached to the disease. That’s when a group of HIVpositive patients joined forces and established ACT UP in 1987. This was a group of angry
patients who were determined to stand up and fight for their rights.
They realised that anger alone cannot bring about a mindset change.They dedicated themselves
to their mission of advocating for AIDS patients, and put in a lot of hard work to acquire
knowledge by attending scientific meetings.They learned about drug design; biomedical research;
clinical trials, the commercial interests of pharmaceutical companies, and how the Food and
Drug Administration (FDA) of America and the National Institute of Health (NIH) function.
Armed with this information, these patient advocates then sat down with policy makers,

92

scientists and regulators and pushed for wide-scale changes by demanding transparency and
accountability in the functioning of all these government and non-government agencies. Their
hard work gradually began to pay off and they were able to:
99 Accelerate the FDA approval of anti-viral drugs which were stuck in the trial phase,
so that new drugs could be made available to patients when they needed these
quickly
99 Bring down the price of anti-viral drugs used for AIDS therapy
99 The “parallel track” programme they created enabled seriously ill patients to gain
access to drugs which were still in the clinical trial pipeline, but had not yet gone
through clinical trials
99 Increase funding for AIDS research
AIDS patient advocacy paved the way for more effective medical research that was responsive
to the patient’s needs. This group showed that patients that patient advocates can actually
influence the design, manner and execution of clinical trials.
AIDS garners a lot of media attention, but what happens when people suffer from rare diseases?
They are treated as orphans by the medical community simply because pharmaceutical
companies that fund research on developing new treatments tend to neglect these patients.
They understandably give priority to studies on common diseases because these are much
more likely to lead to the discovery of the next billion dollar blockbuster drug.
Thus patient advocacy groups for rare diseases are often formed and run by patients
themselves or by their family members. One such group is the Lymphangioleiomyomatosis
(LAM) Foundation which was started by the mother of a young woman who died from LAM.
When the young woman asked her mother endless questions about her disease to which
the hapless mother had no answers, she promised her daughter that she would help to find
them. Based on her determination to change the system, she started the LAM foundation
(www.thelamfoundation.org) with the help of the physician who treated her daughter. Such rare
disease patient advocacy groups have played a crucial role in:
99 Raising awareness about the disease
99 Gathering information about the disease and starting a registry for the same
99 Educating researchers about their disease and symptoms
99 Promoting research on rare diseases by raising funds for research activities

93

Often patient advocates (www.rareadvocates.org) work together as a group to amplify their
voice so that their demands are heard and met by researchers and the government.
Following the success of ACT UP, LAM foundation and a clutch of other such organisations,
many patient advocacy groups became active participants in research. New special interest
advocacy groups mushroomed and their growth was so fast and haphazard, they began to
interfere with research with disastrous consequences because they forgot about Murphy’s
Law of Unintended Consequences.
These loosely-formed groups naively began to expect that their participation would help in
expediting the development of new drugs and that this would benefit patients by allowing
them quicker access to new treatments. In one particular study, this intervention ended up
playing havoc with the life of patients with metastatic breast cancer.
A therapy called high dose chemotherapy with autologous bone marrow transplantation (HDCABMT) was being tested for treating women with advanced breast cancer. Phase II clinical
trials had been completed and phase III trials were on. Before this stage could be completed,
the patient advocacy groups overseeing the trials started to pressurise insurance companies
to pay for this experimental therapy in regular clinical practise. The emotional pressure from
patients who were clamouring for what was presented as a medical breakthrough ; and the
negative media coverage because the insurance companies refused to cover for a treatment
which was unproven and very expensive, forced insurance companies to cave in. Many women
with metastatic breast cancer were treated with HDC-ABMT therapy. Several years later, the
investigators reached the painful conclusion that HDC-ABMT therapy caused more harm
than good, and it had to be abruptly abandoned. Since insurance companies had agreed to pay
for this very expensive treatment, 41, 000 women underwent this futile, painful therapy, which
even cost some patients their lives. This incident serves as an example of how overzealous
and well-meaning patient advocates can end up inflicting harm on the patients they are meant
to protect.To guard against such disasters, it is important that patient advocates gain scientific
expertise about the disease, the drugs and clinical trials, before trying to leverage their clout
to influence the decisions of researchers, policy makers or insurance companies. Critically-ill
patients are desperate and willing to “try anything” to get better. At such times it’s important
that patient advocates advice rationality. They should keep in mind that not all scientific
experiments succeed and that a clinical trial means that doctors do not have all the answers
- not yet.
Medical research often progresses in an unpredictable fashion, and trying to fast forward
it is not sound science. Clinical trials are conducted to gain knowledge and benefit future
patients - they are not designed to benefit trial participants. In India, the Supreme Court and

94

the NHRC Guidelines on Medical Research forbid monetary inducements for participants to
safeguard their interests.
In hospitals, clinical trials must have the approval of ethical committees that also invite lay
people on the decision-making panel. In essence, these committee members function as
patient advocates but they need to do their homework in order to understand the nature
of scientific research and its limitations, in order to be able to contribute to the research
process in a meaningful fashion.

95

for a Patient

It’s possible to become a patient-advocate without alienating hospital staff.
You can help your patient without getting in the way of important tests, or
hampering treatments

D

octors are not super humans and they cannot cure all their patients. However,
sometimes they are so focussed on the technical aspects of the medical care they
provide, that they forget that a pat on the shoulder and a reassuring smile can make
a world of a difference to the patient.
As a patient-advocate, you can help doctors
and nurses deliver humane, compassionate and
empathetic care to their patients. You have the
resources at your disposal. You have the medical
knowledge and you know how the system works.
You know where to go for a second opinion; and
you know which hospital has the latest technology
and which doctor has specialised expertise. You
know whom to contact in case of an emergency,
what forms to fill out; and what formalities to
complete. You can tap into your skills to ensure
that patients are treated with love and care by
the medical staff.

A Win-Win Patient Mantra
Apollo Hospitals Chennai has
introduced a patient tracking solution
called Patient Mantra. They use this
to identify the location of patient in
the health check-up process, so they
can track how long they have been
waiting at any given location. This
helps them to resolve bottlenecks.

It’s possible to become an advocate without upsetting hospital staff. There’s no need to rock
the boat and put your patient’s life in danger. Being an advocate is all about being informed,
present, persistent, and caring. It is not about being loud, arrogant, adversarial, or obnoxious.
It’s a delicate balancing act, rendered with humility and helpfulness, where everybody has to
learn to be a team player.

97

Your ultimate goal must be to establish a relationship of trust. For as long as you are in the
hospital, try not to throw your weight around, or come across as uncouth; don’t over react
over minor issues or pull strings to fix small problems. Change the way you approach a nurse
or ward boy for help. Use words like “Help,” “Excuse me,” “May I,” “Thank you” and “Sorry”
as often as you can, before asking for a bedpan, a glass of water, a change of sheets, an extra
pillow etc.
You thank people who serve you at restaurants, so why not do it in the hospital too? If you
are polite to nurses and ward boys, they will respond in kind. Have faith in the system. Believe
that everyone wants to be helpful. Saying a sincere “Thank you” will make hospital staff feel
good about their job and they will be more polite in the future.
When a doctor visits, listen carefully before you start bombarding him with questions. Be
prepared with your list of doubts. Don’t waste his time by beating about the bush – this just
irritates a busy doctor. Surgeons will always have one foot out of the door, so prioritise your
questions and get to the point quickly.
Some staff members may still regard you as a nuisance. A few may appreciate your efforts and
others may feel threatened. Don’t put them
Discharge Planning
on the defensive. Don’t let the negatives of a
situation vitiate the hospital environment. On
Mrs. Chadha was extremely excited about
the other hand, don’t get cowed down by the
finally being able to go home after a
hospital staff either.You are not there to win
prolonged stay in the hospital, where she
a popularity contest - you are there to save
was recovering from a critical illness. On
a life. Not everybody has the skill or ability
the morning of her discharge, Dr. Bhatia
of being able to connect with others quickly
co-ordinated with her advocate, who
and easily, but a good patient-advocate has
carefully reviewed all of Mrs. Chadha’s
mastered this art.
medical needs. A nurse met with her and
her son to review all the medications.
Because patients can’t fight for their rights
Her advocate made arrangements with
any better than defendants can argue their
her doctor for the first follow-up. The
own cases, or citizens can file their tax
dietician carefully reviewed the diet
returns without the help of a CA, patients
plans ordered by Dr. Bhatia and the
need the help of a patient advocate to
physiotherapist reviewed her exercise
make their hospital stay comfortable. In
programme. When Mrs. Chadha left the
fact, progressive hospitals are investing in
hospital, she was pleased and grateful
employing professional patient-advocates,
that all of her follow-up care had been
whose job it is to make the hospital more
arranged by her advocate.
hospitable. Patient advocates help to pamper

98

for a Patient
patients, so that they go home fully recovered, and full of praise for the hospital and the
medical staff.
Most doctors and nurses are professional and efficient in the discharge of their duties. But you
still need someone who will put the patient first when she is in hospital - and no one can do
this job better than a patient-advocate. An advocate provides personalised care to the patient.
Every patient is entitled to the highest quality care - the kind a VIP gets when he enters a
hospital. Patient-advocates can help to resolve complaints; gather feedback about hospital
services; and implement suggestions to improve care and enhance patient satisfaction.
These professionals should not be viewed as competitors to the medical team, but as partners
who can fill the gap in services, and assist patients in negotiating the complex healthcare
system. The real value of a patient-advocate lies in her ability to represent the patient - and
every patient is special and unique. She can assist the doctor in understanding the patient’s
experience and her personal preferences, so that the doctor can customise the solution he
offers to the patient. A patient advocate helps the medical team to deliver friendly efficient
and effective service, tailored to the patient’s needs, by being a partner, teammate and personal
coach. To illustrate, let me give you an example:
A 37-year-old patient with a serious lung
infection had to be shifted to a ventilator and
was put in a medically induced coma in the ICU.
On the third day, he suddenly became alert and
couldn’t figure out where he was. His arms were
restrained and he could not spot any of his family
members around him. He had had a tracheotomy
done two days ago to assist him in breathing so
he couldn’t even speak. When he came around,
he naturally panicked and gestured wildly to the
nurse attendant in the ICU.

A Nurse-advocate
The nurse-patient relationship is
one of unequal power. Although the
nurse may not immediately perceive
it, the nurse has more power than
the patient. The nurse has more
authority and influence in the health
care system, specialised knowledge,
access to sensitive information, and
the ability to advocate for the patient
and his family. The appropriate use of
power, in a caring manner, enables the
nurse to partner with the patient and
his family.

Thankfully, she was a good nurse and she
recognised that the patient was conscious and
anxious. She rushed to the patient’s side, took
his hand in hers and in a soft, crooning voice
addressed him by name, while trying to assure him
that everything was alright and that the doctors
were making sure that his lungs were functioning normally. Then she offered to inform his
family that he was awake.While doing all this, the nurse took care not to let go of the patient’s

99

hand, made direct eye contact and spoke in a very warm, soft tone.The patient quickly calmed
down - and was full of praises for the loving care he received.
Another incident that a five-year-old’s father once narrated to me was when he was taking
his toddler to a hospital for treatment of a profusely bleeding wound on the scalp. He was
frantically looking for a wheelchair for his son in the parking lot, and although it was not his
job, the parking attendant on duty rushed to fetch a stretcher for the little boy, who was
placed safely in good hands in a few minutes. The parking attendant saw the father’s distress
and responded to it with urgency.To this day, this father has not forgotten that act of kindness.
The moral of the story is that everybody working in a hospital, from the sweeper to the
surgeon, has a moral obligation to be a patient advocate.An example must be set by the senior
management team, who should take daily rounds, and visit each patient personally, so they can
resolve complaints before they snowball.The message will then percolate down all the way to
the ward boy - because staff members imitate what their bosses do - not what they say.
All hospital staff members must learn to read a situation from the patients’ point of view.
Surrounded by a battery of specialists — cardiologists, endocrinologists, orthopaedists,
neurologists, and more, patients are scared, confused, and vulnerable. Specialists are often
too busy to give their patients the full attention they deserve. That’s when the others around
them can step in to fill the void. If and when the opportunity presents itself, the supporting
battalion of nurses, paramedics, ward boys, hospital administrators, and clerks must serve as
patient advocates. It costs them nothing, but can deliver rich returns - both from the sense of
personal satisfaction such acts of kindness generate; as well as the resulting enhancement of
the hospital’s reputation. At the bare minimum, this would bring a smile to a harried patient’s
face - and a patient who goes home with happy memories of her hospital stay will become a
brand-ambassador for the hospital.
While all the hospital staff (barring a few rotten apples) mean well and want the patient to get
well and go home as early as possible, sometimes they are spread too thin. After performing
ten surgeries in a day, a doctor can be expected to feel a little tired. A nurse may be feeling
low, because she has just done a double shift, or the billing clerk may be cranky because he
got ticked off by his boss – and in those circumstances, they are not able to give tender loving
care to the patient - after all, they are human too. This is where a personal full time patientadvocate can shine - and help patients get the care they want and need.

Playing the role of a patient-advocate

100

for a Patient
Even if you cannot afford a full time patient advocate, there’s a lot you can do personally to
advocate for your patient. Once you arrive at the hospital and have provided staff with the
information needed to admit or treat your loved one, you should:
99 Find out who the “attending physician” is. This is the person who will coordinate
and oversee your loved one’s care, work with consulting physicians and specialists,
and have responsibility for your patient’s treatment plan.
99 Get the phone numbers for the attending physician and make sure that he knows
how to contact you directly regarding your loved one’s care.
99 Keep a list of questions ready to ask your attending physician. You never know
when the doctor will show up by your patient’s bedside. A typical visit won’t last
more than 10 minutes. If, for some reason you won’t be in the room when the
doctor visits, leave your list with the nurse.
99 Introduce yourself to the nursing staff. They will be providing the bulk of the handson care to your loved one. They should be able to answer most of your questions
on medication, treatments or procedures. If they can’t, they will direct you to
another clinician who can. Nurses typically work on 12-hour shifts (i.e. from 6 a.m.
to 6 p.m.) so find out when the shift change is and try to wait until the nurse on
duty has the information she needs to answer your questions.
99 Get to know the hospital’s discharge planner or case manager. It is their job to
help with discharging your loved one and ensuring that you have all the information
you need before leaving the hospital. She can provide you information about local
resources, referrals to other medical professionals, when to follow up, etc.

101

19. Meeting the Special Needs of Patients

Not all patients will have similar needs. As a patient advocate, your responsibility
is to tailor your services to the specific needs of your patients

A

frail 81-year-old woman was counting her last few breaths. Her physician met with
the family and they all agreed
Patient Pilot
that comfort care was the
best option for this patient. They
quickly shifted her to a quiet corner This is a mobile application, available from the Apple
of the intensive care unit (ICU) where Store (www.patient-pilot.com/a/#!prettyPhoto). A
she would not be disturbed by the mobile medical navigator, PatientPilot coaches you
regular flow of incoming and outgoing on your journey through the healthcare system
and offers tips on what questions to ask your
patients.
doctors, how to find essential and reliable medical
The entire family of five sons, three information and how to make the right medical
daughters, their husbands, wives, decisions. PatientPilot’s guidance is gleaned from
and several of her grandchildren had more than 125 authoritative sources in the
gathered at the hospital, waiting to medical and patient advocacy communities. You
meet her during her final moments. can log into the database anytime and anywhere –
Although they took turns, there were not just at home, but in the waiting room, during
still too many of them, and they were an appointment, in the hospital room and at the
crowding the small waiting room. The pharmacy.
nurse-advocate assigned to them by
the hospital, took stock of the situation and decided to take the doctor’s permission to move
the dying woman to a different, less-crowded floor of the hospital.
She personally supervised all the preparations and professionally explained to the family that
this was in the best interest of the patient. They agreed and she was shifted uneventfully.
The doctor visited them a couple of times in the night and saw them huddled around the
matriarch, holding hands and praying for her peaceful passage. The dignity with which they let
her go moved everyone who watched them to tears.

103

In doing all this and more, the hospital had made no big sacrifices. However by providing them
with a little privacy and quiet, the nurse-advocate had given them the strength to deal with
this difficult hour. After the woman passed away peacefully in her sleep early the next morning,
the nurse-advocate told them to take all the time they needed to mourn her.
When they left, one member of the family quietly hugged the nurse-advocate and said “I am
also a nurse at a private hospital. But today, I learnt an important lesson in patient care from
you. Thank you for being our advocate.”
At times such as these, being an advocate can make a world of a difference to a patient and her
family. The advocate can bend the hospital’s rigid rules, to allow an often heartless bureaucracy
to put the patient first.When a loved one falls ill, finding the right doctor and getting the right
care is all that matters to a patient’s family. Sick patients and family members are vulnerable
and can easily get lost in the labyrinth of today’s complex medical system. Effective case
management and intervention by patient-advocates can allow the hospital and doctors to
tailor care to meet the family’s needs, by establishing better communication channels among
the patient, her family and health care providers.
“Did you get a second opinion?” is the question people often ask a patient’s family. Arranging
for a second, and if necessary, third opinion is another area where a patient-advocate can
make her contribution count. Because time is of the essence when the condition is serious,
patient advocates can be useful in providing joint consultations and securing speedy
appointments; whereas in the case of chronic illness, patient-advocates can maximize your
sense of wellness.They can monitor your progress
on a regular basis, check in routinely with your
What You Can Demand From
doctor and ensure that the appropriate medical
Your Advocate
protocols are being followed.
ff You have a right to ask for and
Typically, a patient advocate will meet with the
obtain complete information
doctor to discuss and outline a patient’s treatment
about your care and treatment.
programme. She will then work with the patient ff You can ask about any drug you
and her family to make them understand the
are being given.
implications of the disease; explains the various
ff You can request medications that
treatment options; and last but not the least,
you think might help you.
identify any gaps in care and help plug those
loopholes by meeting with the healthcare service ff You can expect your role and
your caregiver’s role to be treated
providers on behalf of the patient.This can require
with respect.
a lot of coordination, because the healthcare
world is often fragmented, and one specialist ff You can request a second opinion.

104

19. Meeting the Special Needs of Patients
often has no clue what the other is doing. Here are a few other categories of special needs
patients for advocacy efforts:

Patient-Advocates for young children
A father was playing ball with his two young children. One of the children got hurt in the head
with the hard ball. She appeared to be fine, but on the third day after that incident, she started
complaining of severe headaches. The alarmed parents took her to the emergency room
of a local hospital, where the resident doctor even after knowing the child’s head trauma,
diagnosed it as a viral infection and proceeded to send her home to rest. The parents did not
feel comfortable with this advice. Their gut instinct told them that something was seriously
wrong.When they politely suggested a CT scan for the child, the doctor felt insulted. Refusing
to be cowed down, the parents dug their heels in and the doctor had no choice but to order
the test that confirmed the parent’s worst fears - the scan showed bleeding into the brain,
most likely caused by the head injury. Had the parents taken their child home to “ sleep off
the virus “ that night, their child probably would never have woken up. It’s your child. Go with
your parental gut instinct. Your child doesn’t have a voice, and you need to stand up and be
her advocate.

Patient advocacy for the mentally-ill
Sunita Nair (45) got admitted into the inpatient/acute care psychiatric unit after a foiled suicide
attempt. She was kept under observation for two days and looked clinically depressed. She
had poor appetite and no interest in social interaction. In addition, she expressed ambivalence
about acting on her suicidal thoughts, at times denying and at times endorsing those feelings.
On the third day the patient denied suicidal ideation. The physician decided to discharge her,
because she was no longer actively suicidal. However, her patient-advocate, who spent much
more time with Sunita and had a much better rapport with her than the doctor, thought
differently. She believed that the patient needed more time in the inpatient unit and the doctor
was wise enough to listen to her reasoning. This intervention may have saved Sunita’s life.

Patient advocates and organ transplantation
Patient advocate work closely with hospitals, organ and tissue banks to identify organ donors
and ensure suitable matches for terminally-ill patients in need of transplants. The decision
to donate an organ or undergo a transplant is not a decision families make lightly. Patient
advocates provide reassurance, resources and advice to patients at that difficult hour.

105


QUIZ TIME: Advocacy in Special Circumstances
Advocates can shine when your patient has a need and you speak up for them and help them
get their needs addressed.
99 Your patient has just had surgery. The doctor has prescribed pain-killers, but they
are not taking effect and the patient is still in a lot of pain. The order says she can’t
have another dose for three more hours. What do you do?
99 Your patient is a vegetarian but receives meat on her dinner tray. What do you do?
99 Your patient is a Muslim and must offer namaz at least five times every day. He has
even carried a prayer mat to the hospital with him. What help can you offer this
patient?
99 A young mother suffers haemorrhage after giving birth to a child. She is in the ICU
and requests that she be allowed to see her baby at least once, in case she dies. The
hospital has a policy – they do not allow infants into the ICU. To complicate matters,
the mother is so ill she can’t be taken to the nursery. What would you do?
99 A patient is about to be discharged with a long list of prescriptions. She confides
in you that she is a single, jobless woman and cannot afford some of those costly
medications to get better. What would you do?
Please note that these questions don’t have any right or wrong answers. But mulling on these
tricky situations and thinking of the appropriate response might help you figure out your roles
and responsibilities as a patient-advocate.

106

Treatment Outcomes

Dr Dhivya Ramasamy
Positive health outcomes depend not just on the clinical but also on the
non-clinical aspects of a patient’s treatment plan

O

ver the years, thanks to rapid advances made in understanding the causes of various
diseases and developing newer methods of managing them, healthcare providers have
been successful in bringing about wide scale improvement in patient care. Today, we
have effective clinical solutions in place to treat most diseases. However, even those diseases
that can be treated through well-established, standard treatment protocols, such as cataracts
or refractive error, remain poorly addressed –cataract continues to be the number one cause
of blindness in the world, mainly because of non-clinical, patient-related factors that impact
positive clinical outcomes (Source: Donatella Pascolini, Silvio Paolo Mariotti; Global estimates of
visual impairment: 2010; Br J Ophthalmol 2012; 96:614-618).
Aravind Eye Hospitals in Tamil Nadu has been grappling with this challenge for years and
has striven to address this issue through active patient engagement. This article explores the
potential of engaging patients in their treatment to achieve better treatment outcomes.

When can the treatment protocol be deemed to be effective?
How do we measure the effectiveness of a treatment plan? That’s a tricky question. At any
healthcare establishment, the metric used is the number of patients seen or the number of
surgeries performed. Let’s examine how this metric would apply to an eye care facility.
Given our progressive national eye care programme and the wide spread use of communitybased outreach camps, a significant number of patients get examined and identified for cataract
surgery, every year. However only a fraction of those advised surgery, actually undergo it. The
acceptance of cataract surgery is reported to be around only 14% in the community and 45%

107

in hospital-based settings. Knowing that surgery is the only solution for treating cataract, how
do we ensure that those with cataract seek care and undergo the surgery?
Similarly, children with uncorrected refractive error have a significant disadvantage and tend
to do poorly in studies and sports.This can adversely affect the future career prospects of the
child. While spectacles provide a simple and cost-effective solution, it has been reported that
compliance with spectacle wear among school children remains as low as 30%.How do we
ensure that the needs of children with refractive error are effectively addressed?
As a third example, patients with glaucoma (a chronic ocular condition) are required to be on
continuous medication and must come for essential annual review visits. Patients with poor
adherence show progressive worsening of the disease. Yet, adherence to medication is poor.
Also, the adherence to the essential follow visits drops to less than a third by the fourth year.
How do we enable glaucoma patients to have their disease effectively controlled?
The inference from these examples is that for any treatment to be truly effective, it’s important
that each and every patient successfully completes his treatment journey:

Figure 1:The Patient Journey
While we advocate this treatment pathway to all our patients, in reality we see patients drop
off at different points along their journey, eventually rendering the treatment ineffective.
Over the years, we have experimented with the following strategies to reduce this drop-off
rate:

Patient engagement
Given that much of the treatment depends on the behaviour of the patient, our strategy has
been to nudge him in the right direction. Actively engaging patients in their treatment plan
can help in positively influencing their role in seeking care; adhering to the treatment advised;
following instructions for self-care ; and returning for review visits.

Helping patients seek timely care
Awareness creation through well-designed health education programmes targeted at the
appropriate audience can help patients identify symptoms and seek timely care. Squint or
strabismus is considered to bring good luck, hence parents in India often do not attempt to
108

Treatment Outcomes
correct these conditions. It is important to break such misconceptions. Parents should be
made aware that strabismus can lead to severe visual impairment, so they must act fast.
Low birth weight children are at risk for Retinopathy of Prematurity, leading to degeneration
of the retina. This can be controlled if managed within three weeks of birth. Thus it’s essential
to make pregnant mothers aware of this condition so they can seek timely care for their
premature babies.

Partnering with opinion leaders in the community
For conditions that are widespread in the population (such as cataract and diabetes), it’s
important to rope in youth volunteer groups, NGOs, Rotary Clubs, etc to assist in information
dissemination.

Helping patients make the right decision
At Aravind, counselors are an integral part of
our clinical team. They ensure that patients have
the opportunity to voice their concerns and
clarify their doubts. Today, the cataract surgery
acceptance rate is about 75% in our hospital, and
about 85% in the outreach camps, thanks to the
presence of these counselors.
Aravind’s counselors are recruited when they pass
out from high school and are intensively trained
for two years in : the basics of how the eye works;
its diseases; treatment options; and counseling
techniques. Regular monitoring and performance
feedback help them perfect their counseling skills
on an ongoing basis.

Highlights
ff Treatment effectiveness must
be measured along the entire
treatment pathway
ff Patient barriers must be factored
into your care delivery
ff Hospitals must proactively engage
with patients to create more
awareness about their treatment
choices
ff Cultivating community partners
can have a positive impact on
treatment outcomes
ff Counseling can be a powerful
tool for patient engagement and
enhances adherence

Patient Motivators
We’ve discovered that where patients face emotional and psychological barriers to following
medical advice, peer counseling is very effective. In the early 1990s when cataract surgical
acceptance was poor, Aravind found the use of aphakic motivators was the most effective
means to convince patients to undergo cataract surgery. These were patients who had
undergone the surgery themselves and were able to share their experience with those being
counseled.

109

All said and done, patients have different information needs.Their concerns and questions are
unique to the stage they find themselves in (Figure 2). Patient engagement strategies must be
customized to address these specific needs and the individual’s treatment goals.

Figure 2: Information Needs of the Patient
(Source:The Informed Patient: Study Report, March 2003; D.E. Detmer, et al; Judge Institute of Management, UK)

In the final analysis, the hospital must take full ownership of patient disengagement and find
innovative ways of engaging patients to help them reclaim control over their lost health.

110

21. How Patient Advocates Can Promote Medical Tourism

21. How Patient Advocates Can Promote
Medical Tourism

An independent patient-advocate can guide an overseas
guest to the right destination

I

n 2010, over five million patients travelled to other parts of the globe in search of better
health care. The growth of medical tourism is driven by two factors:
99 Steep rise in the medical costs in developed countries and
99 Improved health care infrastructure and better healthcare standards in developing
nations.

A favourable currency exchange is a major driver for medical tourists. Each dollar spent in
Indian fetches more value for a healthcare consumer than is possible in the US. In terms of
infrastructure, many hospitals in Asia are now equipped with state-of-the-art medical equipment.
Their doctors and surgeons have received their training in the best medical universities across
the world. India is also home to some of the most fascinating holiday options in the world.
Since resting and relaxing are important ways of recuperating after a surgery, what can be
better than clubbing medical tourism with luxury travel and patient advocacy?
Recognising the huge business opportunity in this field, governments, large hospitals and doctors
are flooding the medical tourism market with attractively packaged deals and services, making
the final choice of a hospital extremely difficult for a patient. This is where an independent
patient advocate can be of service to an overseas patient. He can impartially advise the patient
on what hospital to choose for a particular procedure, so that they do not get swayed by
their misleading marketing hype. He can educate the traveller on what costs to expect; who
the specialists in each field are; help them get appointments expeditiously and guide them on
where to stay and how to follow-up after the procedure is completed.
Indian culture has always laid get stress on treating visitors as respected guests. Medical
tourists require a lot of hand holding, and patient advocates are well-equipped to meet their
needs.

111

SECTION 5

IN THE EVENT
OF MEDICAL
NEGLIGENCE

22. Helping the Patient File a ComplaintUsing the Law to Strengthen the Patient’s Voice

When you want to make a complaint but don’t know where to start,
go to a patient advocate

O

n January 17, the Supreme Court of
India directed a Hyderabad-based superspecialty hospital to pay Rs 2.05 lakh as
compensation to the widow of a patient who
had died of a heart attack, while being treated at
the hospital for a shoulder injury. The National
Consumer Disputes Redressal Commission
(NCDRC) said the inability of the hospital to
explain what caused the patient’s death left many
questions unanswered.

Why Speak Up at the Hospital?
ff To improve the situation after a
mistake
ff To take action for preventing the
problem from becoming worse
ff To take action that can prevent
the problem from happening to
others

Not every medical error is preventable. And despite taking every available precaution, you
may still be exposed to a medical error. In the event you are harmed by a medical error,
you may be concerned for your health, frightened of the possible consequences, angry at the
doctor’s mistake or his callous disregard of the consequences.You may be seething with anger
and battling with a sea of uncontrollable emotions. You may be feeling utterly helpless and
vulnerable, and may not know what to do next or how to report the incident, or even, who
to report it to?
Fret not. Go to a patient-advocate. Since this is not a formally recognized role in India yet, look
for a person who is seasoned and mature to act as your advocate before you seek a meeting
to sort out issues with the hospital administration.

115


What is a “medical accident”?
If something goes wrong during medical
treatment, this is called a ‘medical
accident’ or ‘adverse event’. In some cases,
complications are unavoidable risks of
a treatment. For example, if an elderly
patient chooses to undergo a heart
bypass surgery, he and his family should
understand that this is a risky procedure,
and complications can occur, no matter
how careful or competent the doctor is.
‘Clinical negligence’ is the legal term
used to describe a medical accident where
a patient has been harmed, not because
of a complication that could not have
been avoided, but because a doctor did
not deliver the proper standard of care.
It doesn’t always mean that the doctor
handling the procedure was incompetent
– it just means that he made a mistake that
he shouldn’t have.

When to Call a Patient Advocate
If you need support in getting answers or in
obtaining documentation.
When you want to make a complaint but
don’t know where to start.
When you are considering legal action but
would like some answers first.
When you feel lost and vulnerable in the
complex healthcare system, while battling a
serious illness.
When you wish you had more support, but
don’t know how to get it.
When you need an independent person to
represent you.
When you simply need someone to listen.

Clinical negligence may include:
99 Making a mistake during surgery
99 Carrying out a procedure without the patient’s consent
99 Administering the wrong drug to the patient
99 Making a wrong diagnosis

Clinical negligence can also include not doing things that should be done, such
as:
99 Not giving timely treatment
99 Not warning the patient or the family about the risks of a particular treatment

116

22. Helping the Patient File a Complaint- Using the Law to Strengthen the Patient’s Voice

When you have a complaint…
Inform the doctor that you would like answers to questions about your care. Be firm but also
be polite. Next, have a strategy in hand.Think
A Case-in-Point
through all your questions and write them all
down. Run these past your patient-advocate.
A 64 year old diabetic man was planning
Inform the hospital in advance that a friend
to sue his health insurance company. The
will accompany you to this meeting in order
insurance company had rejected his claim
to help you understand the medical issues.
for reimbursement, saying that his illness
was pre-existing (it was present before he
Know how much time you have been allotted
took out the policy.) The advocate pulled
for the meeting and ask your questions in
out his medical history and organised all
order – the most important ones first. If
his records. He pored over the patient’s
your doctor won’t speak to you (which is
papers, consulted various medical experts
common) seek an appointment with the
and was able to finally prove to the
hospital’s complaints redressal department
insurance ombudsman that the claim
(if they have one), or the human resource
was justified. The patient was able to
department. If they ask you to file a written
get his claim reimbursed without having
complaint, be careful how you draft this. You
to go through the hassle of filing a case.
may later, depending upon the outcome of
Later on, the advocate contacted other
your meeting, intend to file a suit against the
insurance companies about supplemental
hospital, in which case, you need to be extra
medical plans for this patient, arranged
careful about what you commit to paper,
conference calls with those companies
because this can be used as evidence.
to see what plan best met the patient’s
Don’t be provoked into saying anything that
needs, and got his insurance provider
you may regret later. Don’t convey a sense of
changed so that he would have hassle-free
having been wronged. Read and re-read your
settlement of claims in the future.
questions a few times to make sure that your
charges are well-substantiated and that they
don’t come across as wild, baseless accusations.
If you are not successful in resolving the issue, you have three choices in the matter:
99 You can file a complaint against the doctor with the State Medical Council
99 You can file a complaint with the State Consumer Court
99 You can file a criminal lawsuit against the erring doctor and hospital in a court.

117

This last, your patient-advocate might warn you, could turn out to be the costliest route
in terms of money and time spent. Consumer court is best if your main purpose is to seek
monetary compensation. These cases also get settled faster, typically within a couple of years,
but the hospital may appeal at the level of the national commission, which means it may get
stuck for another couple of years. In contrast, a civil or criminal suit can take more than a
decade or two to settle. Go through the Medical Council of India website (www.mciindia.
org/) carefully to know the procedure of filing your complaint there. They will investigate the
matter and in rare cases, can penalise the doctor by ordering a suspension or cancellation of
his medical license.

Remember that….
Doctors aren’t perfect, and they too make mistakes. As buyers of a medical service, patients
have every right to raise their voice against medical negligence. You can’t be expected to
accept deficient care or poor treatment. Making a formal complaint won’t just benefit you as
a consumer, but it may also benefit the community at large, and perhaps act as a deterrent
in preventing the doctor or hospital from making similar mistakes in the future again. Most
cases of medical malpractice involve
How to Speak Up at the Hospital
negligence or acts of omission
by doctors who fail to meet the
standards of treatment that their ff State your concerns, needs, and expectations
clearly.
patients both need and deserve.
ff Rest assured that complaining will not
compromise your care. Hospitals want to
A patient-advocate, trained in
resolve your problem as quickly as possible.
legal matters should be able to

help you:

99 Establish that a medical
duty was owed to you
99 That the duty owed to you
was breached in some way.
99 That this breach caused
some sort of injury or
death, and finally,
99 That the hospital now
owes you compensation
for the damages causes.
These damages can be
physical or emotional,

ff You should be clear about your own
expectations. What do you want? What do
you expect the hospital to do? This allows the
hospital to know how they can help.

ff If you do not receive a timely response, or
want to address a problem after you’ve left the
hospital, contact the hospital’s customer service
ff You can use the staff of the patient and family
relations department as patient advocates to
discuss your case and how best to proceed.
ff It is usually best to resolve problems through
face-to-face conversations. These can result in
better and faster understanding.

118

22. Helping the Patient File a Complaint- Using the Law to Strengthen the Patient’s Voice
Listening is a key skill of an advocate. Even patients know that advocates are not experts in
medicine or surgery. But when someone listens to them with empathy, letting them vent, they
can heave a sigh of relief.They are reassured that there is someone on their side, who will help
them sort out their problem.

119

23. Dealing With Angry Family Members

Patient-advocates can help hospitals deal with angry family members

W

hen people are anxious or angry, they may not be able to make sense of what
a doctor is saying. When tempers run high, they find it difficult to express their
most pressing concerns. Strong emotions can make processing new or complex
medical information more difficult. What can be done in such a scenario?
Get a patient-advocate on board. Hospitals are stress-inducing places for all the right and
wrong reasons. Patients and family members may
experience a sense of loss of control in such When a Family is Angry
an unfamiliar environment. They often do not
ff Don’t argue, even if you know
understand a lot of what is going on and may feel
their complaint is unjustified
vulnerable, helpless and stripped of all their rights
and options. However this is a wrong perception. ff Listen to what family members
have to say — they might calm
Even in hospitals, patients have rights, as well as,
down if you listen to them and
responsibilities. It’s the advocate’s responsibility to
share their concerns
make them understand both.
ff Do not insist on a meaningful
Intense anger or anxiety can get in the way of good
conversation when families are
treatment and care. Once an 80-year-old patient
emotionally upset and are not
was scheduled to undergo surgery for prostate
ready for this
cancer. He and his wife arrived on time for their ff Healthcare is a joint effort
early morning surgery. The nurse at the reception
between patients, families, and
told them that the surgery was delayed until the
health professionals. Be clear
afternoon. By mid-afternoon, they were told that
and specific about what each
— due to several unexpected emergencies — the
person can do to help
surgery had to be postponed to the next day.
ff Encourage family members to
Already anxious about the upcoming surgery, the
patient and his wife got so angry, they were ready

121

participate in the loved one’s
treatment.

to walk out of the hospital in a huff, but were calmed down by a patient-advocate. Yet the
patient couldn’t sleep two winks that night, kept tossing and turning on his bed and his wife,
who was even angrier, seemed to complain about everything in the room, including the AC,
the water tap, and the cleaner. The next day, when the patient-advocate turned up for his visit
with the couple, the wife pounced on him with the words, “Please tell us how to get out of
this hospital?”
Maintaining his cool, the advocate smiled, patted the woman’s hand gently and said, “Why
don’t you tell me what can I do to help you get through this tough day?”
That immediately calmed down the two and the wife began to slowly confess her fears and
frustrations to the advocate. The advocate also took his time, explaining why surgeries have
to be postponed when more serious cases arrive, and requesting them to be a little more
understanding and patient with the hospital staff.
The fact is that while hospitals are familiar places for doctors and nurses, for patients and their
families they can be extremely scary. Even routine events and procedures can produce anxiety
in such patients. An eye check up can feel as traumatic as open-heart surgery. Knowing what
people feel and helping them relax with comforting words can make a doctor’s job simpler,
and this is what an advocate is trained to do.
A doctor once called up a patient-advocate saying, “This patient doesn’t understand anything.
She refuses to go home. Can you please go and drill some sense into her thick head?”
The patient-advocate went and spoke to the distraught woman. Later he came back and asked
the doctor, “Did you ask the patient why she didn’t want to go home?”
“No,” replied the confused doctor.
“Because she’s homeless and has nowhere to go…”
Unprovoked, nameless anger can be an expression of helplessness. It’s the patient-advocate’s
job to see through the façade and dig out the real source and meaning of that anger and help
resolve the issue quickly and efficiently.

122

24. Managing Conflict of Interest

Patient advocates need to learn how to resolve conflicts

A

patient advocate once was concerned that giving chemotherapy to his client was
causing him more harm than good. During the course of the treatment, the patient
would often complain that he was in agony, telling his advocate, “I can’t take it any
more” and the advocate would faithfully relay his misgivings to the doctor team. The head
of the team didn’t see any merit in the advocate’s objections and ruled them out. Over the
next few months, the advocate watched the patient suffer in silence, through treatments that
the advocate believed he would not have chosen had he been informed in advance about
the pain they might cause him. The patient finally died, but only after the chemo had left him
with unstoppable and painful bleeding in his bladder, robbing him of a more peaceful and
comfortable end.
Patient advocates have to perform a difficult
balancing act. Their primary role is to help their
patient, but they don’t want to escalate an issue
and alienate the hospital staff either. How do
they keep both parties happy?
The biggest challenge in medical practice is the
growing conflict between doctors and patients
– especially over costs. Disagreements can arise
over many issues – ranging from continuing
aggressive treatment for a critically-ill patient
to refusing a patient’s request for antibiotics
to treat a viral infection. End-of-life issues are
especially highly emotionally charged, requiring
active involvement of a patient-advocate. When
conflict arises, communication channels break
down and it’s left to the patient-advocate to sort

123

When to Fire Your Patient
Advocate
Mrs Desai had advanced breast cancer
which had spread virulently. Her
daughter and husband was told that
she was likely to die soon. They were
wondering how to break the news
to her, and eventually the job was
entrusted to the daughter. As they
were about to enter the room, they
heard the patient advocate say, “Are
you resigned to die?” Those were his
exact words. The two attendants felt
shocked at his insensitivity and burst
into tears. No marks for guessing what
happened to the patient-advocate.

things out. A mature advocate understands that at the heart of such conflicts is usually a clash
of values, and because these are hardest to resolve when everyone is emotionally labile, his
first priority is to defuse the emotions and change the climate of mistrust to one of common
ground.
A useful mnemonic which experienced patient advocates use to deal with upset patients is
called RAPSAND.
99 R = Re-establish rapport (Empathy)
99 A = Agreement (Get the patient to say Yes)
99 P = Problem (Define this)
99 S = Solution
99 A = Ask Permission (Is the patient happy with the solution you have offered?)
99 N = Next step (Follow up)
99 D = Document
The most worrisome conflicts are those which arise over treatment choices. If they are not
promptly resolved, they can mar the doctor-patient relationship and have an adverse impact
on the patient’s outcome. Resolving such conflict is therefore the first priority of a patientadvocate. If he has been employed by the hospital, he has to make sure that he puts the
patient’s interests first, and is not seen to be acting in a manner which suggests that he is an
agent appointed by the hospital to protect their interests. The moment a patient feels that an
advocate is representing the hospital, he is likely to lose faith in him. Instead what he needs
to do is:
99 Drive maximum patient participation in care decisions
99 Develop mutual trust and respect between the doctor and the patient and his family
99 Help improve a patient’s experience of a hospital by explaining the hospital system
to them, and emphasizing care, compassion and connections
99 Be seen as impartial ombudsman, to whom patients, as well as the hospital staff can
provide feedback in confidence
99 Provide a mechanism for patients and families to cut through the red tape and avoid
delays in emergency care

124

24. Managing Conflict of Interest
Let’s not forget that patient advocacy is a new discipline in India. A patient advocate has been
introduced as a new component in the care delivery chain, and can help to provide legitimacy
to the patient’s voice when the healthcare system ceases to listen. If an advocate is appointed
by a government agency (as in the West), he is expected to establish formal programmes for
safeguarding patients’ rights, and assist hospital staff in understanding their duties and the
patient’s rights. As a third party, he is expected to balance the interests of both parties and
provide medical and non-medical support in both inpatient and outpatient care. They are also
a trusted source of information, referrals, and navigation.
Once an 80-year-old poor, illiterate woman with breast cancer was being treated like a
senile senior citizen by a resident doctor in a stuffed-to-the-seams government hospital. A
concerned citizen watching this interaction decided to act as her advocate and came to her
aid. To his surprise, he discovered that the woman was very perceptive. However, because she
was illiterate and new to the city (having just arrived from a village) she felt intimidated by her
surroundings; and because of her illness, she was not mentally alert enough to be able to make
her own medical or financial decisions.
The busy surgeon was treating her like an imbecile, but the advocate invested his time in
talking with her, listening patiently, and asking her the right questions, so she could understand
her treatment options. Later he took upon himself the job of meeting with her physician. The
physician’s approach to this patient also changed, once he found someone was taking an active
interest in her case and documenting his discussions with the patient. He quickly became
more respectful and thoughtful.
Because patient advocates collaborate closely with hospital staff on patient safety and qualityrelated issues, they can help hospitals identify opportunities to improve patient satisfaction,
and bring about much-needed improvement, especially for poor, uneducated patients.Whether
through position or persuasion, patient advocates can make good use of medical data, and
offer sensible recommendations so the government hospital can improve its track record..
A doctor once had a serious difference of opinion with the father of a little boy, who had
met with a road accident. The father felt that his son would benefit from a particular type
of physiotherapy. The doctor didn’t. The father brought him loads of health literature but the
doctor was not impressed. They argued over the matter. Finally, they both agreed to get a
third – independent – opinion. The doctor called in another doctor-friend to act as a patientadvocate. This second doctor read the patient’s report and medical file. Ultimately he agreed
with the father’s point of view and said there was no harm in trying out the therapy for a
short span of time and if it didn’t work, they could always change it later on.When they heard

125

him, both men laughed. An ego-conflict was amicably resolved. Later, this second doctor also
helped the patient’s father get the therapy reimbursed by his insurance company. To this day,
the patient remains grateful to the advocate and speaks very highly of the first doctor, who
put him in touch with this advocate. For every health problem – big or small, he always goes
back to the same hospital.
The moral of this story is - whatever you do; don’t let a patient walk out of your facility
disillusioned, angry or dissatisfied. When you can’t reach an agreement, get an advocate on
board. He will resolve the issue in the most humane way.

126

SECTION 6

MEDIATING WITH
THIRD PARTIES

127

25. Mediating With Insurance Companies

In the complex world of modern medicine, where hospitals bills are
often paid by insurance companies, you need someone to negotiate
on your behalf

T

wo days after surgery to replace both his knee joints, a social worker employed by a
hospital informed the patient that the insurance company would not pay for his stay
at the hospital any longer. However observing that the patient was barely able to get
to the bathroom unaided, the patient-advocate, on her own accord, informed the insurance
company that the patient was not ready for discharge and insisted that he be given at least
one more day’s stay in the hospital. The request was granted and the patient was grateful for
the advocate’s timely intervention. Left to his own devices, he was in no shape to argue his
case with the insurance company call center staff, whose primary goal is to save money for
the company, and who do not care about a patient’s well-being.
In the complex world of modern medicine, where hospitals bills are often paid by insurance
companies patients - especially those who are critically ill, need a patient-advocate -, someone
to negotiate on their behalf with the insurance company, to ensure that they are receiving the
care that they deserve.
Mahesh Sharma was stabbed in the neck by unknown miscreants and was seriously injured. He
was rushed to a nearby trauma center, but the problem was that this centre was not affiliated
to the health insurance company from which he had bought a health insurance policy. Cashless
care was therefore ruled out. His wife settled the hospital bill and six days later Sharma was
discharged from the hospital. Four weeks into his recovery, he received a letter from his
insurance company informing him that his claim for reimbursement was denied because the
trauma centre was not part of their service network!
He consulted a friend who informed him about a non-government patient-advocacy group
that mediates with insurance companies on behalf of consumers like Sharma. Six months later,
with the assistance of this advocacy group, who petitioned the IRDA (Insurance Regulatory

129

and Development Authority), Sharma won his the case, and besides the cost of the treatment,
he was also awarded damages for delay and needless harassment caused by the insurance
company.
When you file a claim, you need to study the fine print in your insurance policy carefully.There
are likely to be terms such as deductible, coinsurance, co-pay, out-of-pocket limit, definitions
of out-of-network and emergency services; and details of the appeals process, that may not
be immediately clear, because they are couched in dense legalese. A patient-advocate can help
you make sense of these !
Literacy on insurance related issues is extremely low in India. You may think you deserve
full reimbursement, whereas your policy may provide only for partial pay out. Sit with your
advocate and understand your entitlement before you file a petition. Remember that besides
resolving disagreements between patients and insurers, the main responsibility of a patientadvocate is to give more information to citizens about health insurance in an objective,
professional and impartial manner.

130

26. Arranging Concierge Services

A patient-advocate won’t let a patient feel like a medical statistic. He can
make him feel like a special customer

W

hen Nisha Malhotra got
diagnosed with brain cancer,
she knew she needed to make
a few urgent decisions and that she needed
the help of a compassionate, knowledgeable
patient-advocate.
Abroad, retired general physicians often
use their years of clinical experience and
expertise to become patient-advocates in
order to help patients like Nisha identify
specialists, treatment protocols and facilities
which are renowned for being world-class
for treating her disease. Some mature into
specialist patient-advocacy firms, taking on
board former healthcare administrators
and registered nurses. They function like
mediators, helping connect patients with
doctors and vice-versa. When required, they
also negotiate with insurance companies on
patients’ behalf.

Components of a Master Care Plan
ff Assist with the care coordination
process
ff Schedule medical visits (physician
appointments, lab visits, etc.).
ff Prepare for medical appointments,
including developing lists of questions
to ask the doctor.
ff Provide documentation of pertinent
medical information.
ff Arrange for patient transportation to
and from medical appointments.
ff Coordinate care assistance with
other health professionals, such as
social workers, physical/occupational
therapists, home-health care givers, and
nursing home staff members.

Although many patients are net savvy and can access most health-related information online,
it still takes a lot of time to research your condition, find the best experts, and negotiate with
insurance companies. In cases of rare or chronic illnesses, accessing these services poses an
even greater challenge.

131

Abroad, government-funded wellness programmes offer concierge services and provide
patient coaching, resource mobilisation, rehabilitation and disease management.These services
are generally customised to individual patients and their families, and continue long after the
medical procedure is completed.
A mother of two who works as a school teacher, Sangeeta Chuhan was finding it difficult
scheduling a meeting with a paediatrician for her eight-year-old daughter. She was surprised
how fast the appointment got made through a patient-advocate, in this case a friend of the
paediatrician’s secretary. In India, since the practice is still evolving, you may not easily find such
advocacy firms, but there are always people around you, who perform this role informally.
These people can:
99 Assist you in locating doctors, specialists, and treatment facilities locally and
nationally.
99 Help you organise your medical records, including current prescriptions, drug
allergies, past surgical history, and other
data.
When in Need, Call Out to Your
99 Draw up an individualised medical plan,
Advocate
based on the doctor’s medical advice,
set medical goals and explain and help
Sunita Manchanda is recovering
you adhere to the various treatment
from a stroke that left her right side
protocols.
paralysed. She and her doctors have
tried several treatment protocols,
99 Avoid irrational drug combinations
with some success. One particular
through diligent case management.
night, however, Sunita couldn’t get to
99 Let’s face it – it’s not possible to receive
sleep because the pain was worse
good medical care unless you learn to
than ever. She didn’t want to awaken
effectively manage that care. Patienther doctor at 2 a.m., so she spoke to
advocates can help you do that. In
the doctor’s secretary knowing that
addition, they can:
she would receive a response after
99 Schedule medical visits (physician
he, acting as her advocate, spoke to
appointments, lab visits, etc.), when they
her doctor. Just knowing that she
are due and send reminders to you.
could contact her doctor through her
99 Accompany you, if no one else from
advocate comforted Sunita enough to
your family is available.
let her get back to sleep peacefully.
99 Take notes during the consultation and
make a record of it, afterwards.

132

26. Arranging Concierge Services
99 Arrange for your transportation.
99 Co-ordinate visits with allied health professionals, such as social workers, physical/
occupational therapists, nursing home staff members etc.
99 Make alternate living arrangements (e.g. assisted living facilities) for you, so that your
dignity, independence, safety, and social life are not compromised by your illness.
Given the vast number of hospitals and medical specialists who claim to deliver cutting edge
care, it’s becoming impossible to manage and understand all the information flying around.
Patient advocates sift and sort through this information, de-codify it and present it back to
you in lay-friendly language. In this process they:
99 Relay physicians’ diagnosis and lab results in a simplified language, devoid of all
medical jargon.
99 Sort your medical records and help in storing these in an orderly fashion.
99 Co-ordinate crisis management and are available on a 24/7 platform.
99 Keep family members informed of the patient’s progress.
Health care advocates are trained professionals who are familiar with the ropes of the health
care system. When Neeti Chandra’s husband got diagnosed with bladder cancer, she was in
such a state of shock, that she did not know whom to contact or where to seek help from.
The doctor had made his depressing pronouncement but thanks to the consultation offered
by a second oncologist recommended by a friend, three years later, Neeti’s husband is hale and
hearty and thankfully still keeps his bladder. Fortunately, this friend had a nursing background.
She also had the right contacts. She made appointments, accompanied the couple to the
hospital; explained their lab results and stood by them throughout the difficult period. She
would even type out medical notes after each appointment with the oncologist, monitor the
patient’s progress and obtain regular updates from the doctor’s team. Smita and her husband
would have been completely lost without her. That’s the kind of invaluable help a patientadvocate can render.

133

27. Facilitating A Second Opinion

Patient-advocates have the right contacts to be able to arrange for a
second or third medical opinion for the patient

Y

our doctor drops a bombshell. He tells you that you have a very serious ailment. The
news strikes you like a bolt from the blue. You feel worried, anxious, defeated and
confused, until, your spouse, who is also concerned about your health, suggests you
don’t take the doctor’s word as final and seek a second opinion.You immediately feel relaxed.
In this case, your spouse has acted as your advocate.
One of my patients had an interesting experience to share, “I had a lump in my neck. It was
causing some sinus issues. My doctor sent me for a CT scan and when the results came back,
he told me that it was tumour and had to be removed right away. I felt shocked and unsure of
what to do. I called my sister who suggested that I call her doctor, someone she had consulted
all these years on all her medical issues and trusted completely. I sought an appointment with
my sister’s doc. He asked to see my CT scan along with a few other lab reports. Armed with
all those reports I landed at his office. He examined them and said what my doctor was calling
a “tumour” was actually a benign growth and it had been there for at least one decade without
changing in size or shape. He also said surgery was unnecessary. I felt massively relieved.” In
this case, the patient’s sister played the advocacy role by providing timely advice.
Once, at a patients’ group meet, an elderly man in a wheelchair raised his frail, trembling hand
and asked, “How do I know whether my doctor is giving me the right advice?”
He had a point.You can’t go by a single doctor’s advice about a serious condition - you need to
have it cross-checked with another. After all, your time, money and life are at stake. Doctors,
especially busy doctors, often rush into making a diagnostic pronouncement, without always
dotting all the “i”s and crossing all the “t”s.

135

A “patient advocate” can be a God send in such scenarios. He could be a spouse, a friend, a
brother. Since a caregiver is generally a person on the “inside,” they are in a good position
to know and understand the needs of a loved one. She may not have the necessary medical
background, but her knowledge of the patient’s desires are equally important in making the
best medical decisions.
Banish the thought that a patient-advocate is an adversarial position. It doesn’t necessarily
mean being a doubting Thomas, and rushing out and getting a second opinion on every matter,
or logging on to the internet and conducting your own research and confronting a doctor
with your findings. It doesn’t also imply slipping on the boxing gloves and declaring, “Hey, I am
on the other side. So Beware!”
What it means is that you are careful and wise. You don’t doubt others, but you do crosscheck important information. It means that even if you decide to do your own research or
obtain a second opinion, you will speak about this to your doctor. A good doctor should
appreciate your transparency and this will strengthen your relationship. Remember, effective
patient advocates do not breed discontent; they build long-lasting relationships between
patients and their doctors.
Physicians are bound by a code of medical ethics that directs them to co-operate fully with
their patients. If patients want to take a second or even a third opinion, doctors are legally
bound to share your lab reports, prescriptions, and test results with other physicians.A doctor
worth his salt would not feel insulted by such a suggestion. In fact, if your doctor discourages
you from seeking another opinion, you have every reason to suspect his motives – and this
should motivate you even more to seek another opinion. Generally, a patient-advocate will
advise a second opinion when:
You don’t have confidence in your doctor. Patients are less likely to follow a course of
treatment when it’s prescribed by a doctor whom they don’t trust.
You think there might be other treatment options. If your doctor tells you there is
only one course of action, it should raise a red flag.
Your doctor dismisses your concerns. You know your body best, and if your doctor
doesn’t listen to you or take your symptoms seriously, go see someone else.
You’re not getting better. Medicine is as much an art as a science, so a fresh viewpoint
might make all the difference if you’re not recovering from an illness or surgery at the pace
you expected.

136

27. Facilitating A Second Opinion
You’re doctor recommends surgery. Anytime your doctor recommends an elective
surgery to correct such problems as back pain, cataracts, gall stones or hernia, consider a
second opinion.
Your condition is uncommon. Some conditions are so rare that a physician may have
seen only one or two such cases in her career. It’s worthwhile to consult a doctor at a major
medical centre who has more experience with dealing with rare diseases.

137

28. Providing Access to Alternative Treatment

Healthcare is never provided in a vacuum - it is always embedded in
a cultural context

H

ave you ever wondered…

99 Why patients from one community
often reject one form of medical
treatment, but readily accept another?

99 Why some patients follow their doctor’s
advice, while others do not?
99 Why some people prefer alternative
healers for some form of illnesses (e.g.
insomnia, indigestion etc.) but not for
others (e.g. diabetes and high blood
pressure)?
99 Why one ethnic group has a higher
incidence of certain diseases (e.g.
diabetes, hepatitis C etc.) compared
with another?
99 Why some women abruptly change
their diet patterns during pregnancy
or breastfeeding in ways which may be
harmful to the health of their child?
99 Why are some conditions such as
obesity regarded as “diseases” in one

139

A Note on Safety and Effectiveness
ff Select alternative medicine
practitioners with care. Find
out about their training and
experience.
ff Be aware that some dietary
supplements may interact with
medications or other supplements,
causing potentially harmful effects,
especially in pregnant women,
nursing mothers, or children.
ff Tell all your health care providers
about any complementary and
alternative practices you use. Give
them a full picture of what you do
to manage your health. This will
help ensure coordinated and safe
care.

culture but not in another?
The answer is because every culture has a different world view about the body and health - and
we all unconsciously absorb this view and look at our health through this prism. Healthcare
is never provided in a vacuum, it is always embedded in a cultural context. In a perfect world,
both doctor and patient would share the same prism, leading to optimal health outcomes.
However, it is when the doctor and patient have differing worldviews that a conflict arises.
Dissatisfaction with the modern doctor’s obsession with technical minutiae and his desire to
“treat” lab reports and scan images leads a number of patients (especially among the minorities
and economically weaker sections) to seek alternative treatment options. Not only do they
find these more cost-effective, they are also more aligned with their personal perspective on
health. This has led to the increasing popularity of alternate systems of medical care.
Western medicine doctors are often not
What Should You Look For in An
comfortable with these alternative options
Alternative Care Provider?
because they do not understand them. They feel
that these have not been adequately studied; that ff What will the treatment involve?
they have not been subjected to controlled clinical
ff The frequency and number of
trials to prove their efficacy; that their scientific
visits that the treatment is likely
basis is unproven; and that a lot of alternative
to require?
medicine practitioners are quacks who prey on
the patient’s gullibility. This often leads to conflict, ff The cost of the treatment?
where the patient seeks an alternative medicine ff The results that can be expected?
doctor, without informing his doctor that he is ff The risks involved?
doing so. This kind of hide and seek confuses the
patient and his doctor – and leads to poor health
outcomes. It’s far better that the doctor should seek the help of a patient-advocate, who can
then refer the patient to reliable providers of alternative treatments and complementary
medicine.
Using integrative medicine, advocates help patients combine the best of both the worlds –
Western Allopathy with homeopathy or Ayurveda, depending upon the patient’s preferences.
Typically, an integrative approach is based on the following principles:
99 Our body has the ability to cure itself
99 Healing practices must be individualized, because every patient is unique
99 People are responsible for their own health. Patient-advocates can only guide them
in choosing a set of therapies that might work the best for them
99 Healing must aim for a balancing of mind, body and spirit
140

28. Providing Access to Alternative Treatment

Let me illustrate this point with the following example:
A 45-year-old patient was once diagnosed with a cyst on the left side of his neck that biopsy
showed was cancer. The patient rejected the diagnosis and over time the cyst grew in size
and eventually turned into an inoperable tumour that had spread to his jugular vein. The
oncologist knew that chemotherapy and radiation offered the only ray of hope, but since the
patient was still in a state of denial, the doctor arranged for a consultation with a patientadvocate. Along with accompanying him for his chemotherapy and radiotherapy sessions, she
also arranged meetings with a yoga therapist; and had the patient attend meditation classes.
The combination of therapies worked. Everybody watched as a robust person, who had got
reduced to a skeleton and could no longer swallow because the radiation had destroyed his
oesophagus, started regaining his health bit by bit. Then the day dawned when this patient
tested negative – the cancer had disappeared. Earlier, he had been given eight months to live.
It has been over three years now and this patient is still alive and kicking and lives his life to
the fullest.
Integrative medicine has many streams, including:
Osteopathic Medicine: Osteopaths believe in the healing power of the body and in rebuilding its strength.
Functional Medicine: One of its basic principles
is of biochemical individuality, i.e. treatments should
vary based on genetic and environmental factors.
Traditional Chinese Medicine (TCM): includes
approaches such as acupuncture, and ancient herbal
therapies.
Ayurvedic Medicine: combines herbal therapy
with strict dietary recommendations.
Naturopathic Medicine: Naturopathic doctors
(NDs) combine diet, exercise and lifestyle changes
in their treatment approach..

He found his calling
Mahesh didn’t intend to be a
patient-advocate. But when an
85-year-old friend wasn’t getting the
care he deserved at the emergency
ward of a local hospital, he couldn’t
just stand by and watch. He took
stock of the situation and managed
to galvanise the medical staff into
action. That day, Mahesh found
his calling. He now enjoys helping
patients get the best medical care.

Homeopathic Medicine: This therapeutic
method was developed by the German physician Samuel Christian Hahnemann at the end of
the 18th century.

141


QUIZ TIME: Is Your Patient Ready For Alternate Care?
As a patient-advocate, before you offer alternate therapy for the patient,
ask her …
99 What do you hope to gain out of this therapy?
99 Would you like to talk to a patient about their experiences with these therapies?
99 Would you like to do more research more about this therapy?
99 Are you aware of the side effects of this therapy?
99 Will this treatment interfere with the other treatments that you are taking?
A patient who responds satisfactorily to these questions makes for an ideal candidate for
alternate therapies.

142

SECTION 7

THE PATIENTADVOCATE AS A
PROFESSIONAL

29. Becoming a Professional Patient-Advocate

Private, professional patient advocacy is a new, non-certified practice

T

here is no diploma or degree programme offered in India to get certified as a patientadvocate. The profession is so young that there is no accrediting agency or licensing
body that has developed standards for certifying the skills of patient advocates.

Even in other parts of the world, there are just a few “certificate” courses but no universally
agreed-upon standards for certification. Further, since institutes offer different curricula, have
different eligibility criteria for admission and follow different approaches to programme
delivery (online or offline), the quality of their student output varies accordingly. For example,
while Sarah Lawrence College (http://www.slc.edu/) in New York offers a Master’s level
programme in health advocacy, Cleveland State University (http://www.csuohio.edu/) runs an
online programme on patient advocacy, and both are in demand.

How to choose the right programme?
Begin with a need gap analysis – figure out what is
needed in your skill-set to best serve your clients
and then scout for a school or a programme that
most effectively addresses that knowledge gap. Next,
determine your budget. How much can you spend?
The key is to weigh value against possibilities. Figure
out how much you can spend by determining how
easily you’ll be able to pay yourself back. If you are
already employed somewhere, taking a long sabbatical
to finish a one-year programme may not be practical.
In that case, hunt for an online programme.You’ll find
plenty of courses that answer your specific training
needs. Maybe a short series of weekend courses
would give you a better return on your investment.

145

Training Needed
To be hired as a hospital patient
advocate, you’ll need the
following qualifications: usually an
Associates or Bachelors degree,
and often a Masters degree in
nursing, psychology, humanities,
social services, education, human
relations, communication or
a related field. Many hospital
patient advocates begin as social
workers or in clinical positions.

If your means are limited, find out about scholarships, equated monthly installments (EMI)
schemes, discounts and other funding opportunities that would spread out your outflow over
a period of time.

Who makes a good patient advocate?
Generally, anyone with empathy makes for a good advocate. Advocates who assist elderly
patients and children need plenty of patience. Those who prefer to work with insurance and
billing clerks need to understand how these departments work and they must be good at
number-crunching.

Good training will teach you how to…
99 Improve patient and family experience in a hospital
99 Engage patients and families in the patient’s care
99 Promote patient-and family-centered
care
99 Reduce medical errors by educating
and empowering patients and their
families about the care plan
99 Give voice to healthcare consumers
and their families in a complex
healthcare scenario
99 Reduce fragmentation and duplication
of work
99 Assist in cost reduction
99 Reduce frustration and restore patient
trust in the deteriorating healthcare
system

The Professional Patient Advocate
Institute
New York-Based Professional Patient
Advocate Institute offers high-level,
in-depth training. The Institute serves
independent patient advocates, inhospital patient advocates, employer
groups and others interested in
ensuring effective, consumer-driven
healthcare.
(For more details log on to www.
patientadvocatetraining.com/)

99 Practice a new model of care
coordination
Nurses, lawyers, medical assistants, medical billing clerks, retired doctors and counselors have
the right employment history and experience to be ideal candidates for this job. Some patient
advocates also specialise in health care reform, public education, and legislative matters.
Hospitals also provide in-house training to new recruits which is important, as patientadvocates need to be knowledgeable about the systems and processes of their employer.

146

Patient-advocates need to wear many hats and master many skills.

Be professional
If you don’t exemplify professionalism, how
will you be able to expect it of others? Make
sure you have a website that your patients can
log onto for all their health information needs.
The design, messaging and layout of your site
should be extremely simple and accessible to
lay patients. The navigation should be smooth
and the design must be uncluttered.
Be accessible

As smart phones are becoming more popular,
it’s essential to have a mobile version of your
website. Encourage patients to call you from
their smart phones to seek directions to your
office, schedule appointments or find out
about your services.

Be knowledgeable

Patient advocates for the poor,
downtrodden and underprivileged
An auto rickshaw driver got admitted to
the emergency ward of a government
hospital after he passed out on the road.
After running all the tests, the doctors
concluded that the patient hadn’t taken
his blood pressure medication on time.
The hospital got a patient-advocate to
explain the medication schedule to the
auto driver in Marathi, his local language.
When he was done, the advocate
asked the patient to write down the
instruction in his own handwriting, thus
ensuring he would retain the information
provided ! Busy doctors just do not have
the time to hand hold their patients like
patient advocates can.

One of the best ways to secure the trust and
respect of your patients is to demonstrate to
them that you are an expert in your field. Display your loyal patients’ testimonials on your
website. Maintain a patient library or begin to run a blog so that patients come to you looking
for help, instead of Googling for information.

Build trust and loyalty
A happy patient should be treasured. She will be happy to sing your praises to others - and
word of mouth marketing is worth its weight in gold. Successful patient-advocates wield a lot
of clout. If you do well, hospitals will roll out a red carpet for you and doctors will treat you
(and your patients) as VIPs because you are a good source of patient referrals.

Be able to communicate
Patient advocates serve as liaisons between the patient and his family and doctors, nurses and
health insurance companies. You need to engage with a wide spectrum of people. You have

147

to be an active listener and be able to present your patients’ concerns to the doctors in a
manner that gives them access to the right care.

Be well organised
Patient-advocates must be good record-keepers. You have to fix appointments and follow-up
with doctors, as well as maintain and update patient records in a timely fashion.

Be able to solve problems
A patient advocate’s job is challenging, but if you like tackling problems, the role can be
extremely satisfying.You need research skills and analytical abilities to master problem-solving
techniques, and should be able to sift through loads of information and keep yourself updated
all the time, much like investigative journalists.

Be patient
You will need tons of patience, if you want to learn to protect yourself from burn-out.

Questions you should ask your trainer
Before you join an institute or enrol for a programme, it might be a good idea to ask your
trainer:
99 What is the career path for patient advocates?
99 How long do they typically stay in their jobs?
99 What kind of training and educational programmes do you offer?
99 Are these courses certified?
99 How much would the programme cost and what would be its duration?
99 What do you cover in your content? Do you follow a case-study approach?
99 What are the most challenging aspects of patient advocacy?
99 What are the most engaging aspects of patient advocacy?
Since it’s a long-term investment that you are making in yourself, choose your programme
with care, and after doing in-depth research on the available options.
The truth is that the practice of patient advocacy, just like the practise of medicine, is
complicated; it is an art as well as a science. A good patient advocate is learning all the time. A
patient advocate masters her profession by investing years of training and experience, so that

148

she can identify a problem; make the right decision; and react within a few minutes, till this
ability becomes nearly instinctual. When navigating the healthcare system, time can be critical,
hence the need for humility, experience and expertise.
As with any other profession, patient advocates need to follow a Code of Ethics.The following
principles are very useful as a guideline.

Principle 1
Objectivity: The role of the Professional Patient Advocate is to represent the patient
and family first and foremost, regardless of who employs them.

Principle 2
Scope of Practice: The Professional Patient Advocate must work within her scope of
practice. Other members of the healthcare team should be utilized as needed to meet
the demands of her patient.

Principle 3
Full disclosure of services, fees and length of time services will be performed:
The Professional Patient Advocate must provide to the patient and his family a document
that fully discloses her role and function, as well as the fees and services the patient
advocate will perform.

Principle 4
Confidentiality: A Professional Patient Advocate should obtain a consent that
authorizes the patient advocate to speak and act on behalf of the patient.

Principle 5
Promoting Autonomy: The Professional Patient Advocate’s role is to educate and
empower the patient to make informed decisions based on his individual wishes and in
keeping with his cultural, spiritual, religious and ethical beliefs.

Principle 6
Accountability: The Professional Patient Advocate is held accountable for the work
done on behalf of her patients.

Principle 7
Continuous Learning: The Professional Patient Advocate commits to continuous
learning in order to keep up to date on clinical matters and with trends and advances
that impact patient care.
149

30. Setting Up Shop and
Expanding Your Business

“Patient advocacy” is an up-and-coming career

T

he Entrepreneur Magazine and US News World Report have identified patient advocacy
as a New Age career.
Some of the services that are offered under this broad platform are:

99 Medical / Navigational Assistance

Patient Advocates in Geriatrics

99 Insurance Assistance
99 Home Health Assistance
99 Elder or Geriatric Assistance

Before you start your independent
practice
Ready to jump on the bandwagon? Good.
Your first requirement is a business
plan. This serves as your road map to a
successful advocacy practice. The plan
must spell out your portfolio of services,
financial and non-financial resources, your
marketing strategy and your prospects
for growth. It need not be a lengthy
document, but it does need to have all the
essential components in place.
Further, you need to determine your
business structure. Will you go it alone

A professional nurse by the name of
Maria Fernandez is assigned a patient, an
elderly woman, Sunita who has sustained
a fractured humerus and has her right
arm in a sling. Because of her advanced
age, her orthopedic surgeon is waiting for
the physician to ensure she will be able to
tolerate the stress of surgery. This worries
Sunita, who is wondering why she is being
ignored and neglected. Maria ropes in a
patient-advocate, another patient of Sunita’s
age, who to Maria’s relief is able to strike an
instant rapport with Sunita and explains to
her that the reason for the delay is that her
doctors want her to heal well. The outcome
of this advocacy is that Sunita’s surgery goes
smoothly as scheduled on the third day
of her hospital stay, and she is ready to be
discharged on the fourth day.

151

and be a proprietorship or take on a knowledgeable business associate and register yourself
as a partnership firm? You will need to apply for a PAN number in order to be able to file
your income tax returns. Since you are considered to be a service provider, you also need a
service tax registration number.
A marketing plan will help you define your target clients so you can plan how to reach out to
them. Your most important marketing tool is through word of mouth. Network actively with
doctors, marketing executives of hospitals, and patient communities (online and real-world).
Locate other advocates in your catchment area. Study your competition and find out what
services are available and at what price.These days, big hospitals and insurance companies also
outsource work to external “patient advocates” or “case managers.” See if that opportunity
exists in your area.You may also provide allied services, such as fund-raising, patient education
and running outreach programmes to these clients.
The key to building a sound practice is earning your patients’ goodwill. Learn to pamper them.
Study their needs and wants and then launch services tailor-made around those requirements.
Understanding who you are targeting and finding creative ways of satisfying your customers
is critically important for any service-oriented business. You can find more resources at the
Society for Healthcare Consumer Advocacy website at www.shca-aha.org/

Learning the Ropes of the Trade
Those who work for hospitals and other clinical facilities get to discover that dealing with
angry and illiterate patients is no child’s play.You may feel frustrated and foiled in your attempts
at improving a poor quality hospital service, if the management turns a deaf ear to your
suggestions. Your employer may want you to cut down on your advocacy efforts if he finds
your recommendations are too expensive for them to implement.
Hospital staff may initially be suspicious of your motives because they don’t understand the
role of an advocate.You have to explain to them that your presence at the hospital will allow
the patients to have a good experience of their hospital stay. By putting patients first, you are
helping to strengthen the hospital brand. There will be stress-filled days, but when you get
to lessen someone’s pain and see a smile on a stranger’s face, you will be glad you chose this
profession. The emotional income that patient advocacy brings is highly rewarding.

152

31. How to Market Your Patient
Advocacy Business

The best way to reach out is to use online media, but you also need to rely
on more traditional methods, such as word-of-mouth publicity, to gain
patient goodwill

W

hen a friend’s mother was put on the ventilator in the ICU of a leading hospital,
where she had to fight for her life after developing Acute Respiratory Distress
Syndrome (ARDS) caused by a simple gall bladder removal surgery gone awry,
my friend had trouble finding a patient-advocate who would answer her basic questions about
her mother’s treatment protocol, insurance coverage and alternative treatment options.
This friend lost her mother after a heartbreaking protracted battle, which broke her heart
and her soul. I wish she had had the foresight to seek the services of a professional patientadvocate, who would have guided her through the hospital maze and the litigation process
that she is presently tangled in. Had she known that such advocacy services exist, I am sure
she would have wasted no time in hiring a patient-advocate and secured timely help for her
mother.
Do you feel marketing is not for health advocates? Think again. Most patients and doctors
don’t even know this service exists and they are clueless that a patient-advocate can provide
just the right kind of help during a health crisis. If you’re an independent patient advocate,
trying to run your practice on a shoe-string budget, you need to advertise to create awareness
about your business, which implies that you need to do a lot of word-of-mouth publicity and
social media marketing.
To market effectively, you need to :
Ensure patient satisfaction: Provide quality service and treat clients with respect. In this
profession, it’s really important to come across as compassionate and understanding.

153

Network: Attend hospital events, medical trade shows and local CME meetings for doctors.
That’s where you can talk to doctors, and educate them about your unique services and skill
sets. Most busy doctors would be happy to refer their patients to you, if you can prove that
you can add value.
Social media: This is the cheapest mode of marketing for a small-scale practice. Create a
Facebook page and set-up your Twitter and LinkedIn accounts. It won’t cost you a dime and
can provide rich returns if you put in the hard work needed. Most patients are now online
these days – you need to find out where they hangout, and think about how you can help
them access better care.
Expand your network: Reconnect with former patients and their families. Make it a point
to check up on your ex-patients, even after they have got better. For example, you can send
them an anniversary email on the date of their hospital discharge, congratulating them on
their good health. You can also send them a regular ezine, educating them about their rights
and what they can do to take better care of themselves.They may have friends, co-workers or
acquaintances who may need your services, so make it easy for your clients to refer others
to you.You may also want to offer a free consultation service, which allows you to meet with
confused, distraught or unhappy patients.You can show them how they can benefit from your
timely advice on their medical treatment, hospital costs and insurance cover.
Don’t forget to ask for references and testimonials: Get your clients to rate your
service on a scale of 1 to 10 and proactively ask for feedback on your services. This way, not
only would you be able to get an honest assessment of your skills, this may give you another
opportunity to change their perception of a negative encounter. Record all good and bad
patient experiences as you can learn from both. Use all these testimonials on your company
brochure, blog or website.
Offer to give talks on patient safety and patient rights. Set yourself up as an authority on
these subjects. Let people know what business you are in.Write opinion pieces in newspapers,
start a newsletter service, run a chain e-mail campaign, so you remain “top of mind” when
people need medical help. Grab every opportunity to speak on patient empowerment at local
colleges and universities, Rotary Clubs, healthcare meetings and other venues. Quote your
patients in your speeches and columns.They’ll feel flattered and will be happy to endorse your
services.

154

31. How to Market Your Patient
Advocacy Business

Be a technology superstar
When you are setting-up your independent practice, ensure that you have a website that is
content rich and is frequently updated. Since patient advocacy is such a new field, you will have
to spend a lot of time on educating people as to how you can help them get better medical
care – and why it’s worth their while employing you ! A simple value add service you can
provide is a portal where you upload your patient’s medical records on an ongoing basis, so
they can view their current medications and lab results. If you adopt these modern tools, your
patients will be confident that you are providing them with a cost effective service.

155

32. Summing Up

W

hen you are ill, you are vulnerable, and you need some to stand up for you. While
usually this person is your family doctor, his role is usually limited to providing
you with the right medical treatment. Unfortunately, most of us don’t even have
a family doctor today. This is where patient advocates come in. This is a very broad-based title
that encompasses a bouquet of services for the patients.
While most advocacy in India is done by friends and relatives, there are several independent
professionals and organisations in the US who provide patient advocacy services for a fee.
Many hospitals in the US now have full-time patient advocates. These staff members act as
representatives for patients; and help to resolve grievances and improve communication with
the medical staff. They are the equivalent of an ombudsman, and act as a bridge between
patients and hospital staff.
In India, the word advocate is synonymous with a lawyer, which means it usually carries a
negative connotation. However, in order to become a health advocate, you do not need to
a get a LLB degree. Remember that the word advocacy means someone who champions a
cause; and an advocate is someone who fights for your cause.
It’s helpful to have someone at your bedside in the hospital to make sure overworked nurses
notice if your vital signs are going downhill or to ensure that the right medications are given at
the right time. It’s good to have someone who can get on the Web and research your disease.
And it’s important to have someone to take notes during doctor visits and ask the questions
you forget.
If someone is ill, how can you become a patient advocate for that person? This is actually
something we do informally for friends and family members. Trisha Torrey has as excellent
website at www.everypatientsadvocate.com/index.htm which will show you how to do a better
job. Becoming informed and working as a partner with health care providers helps to insure
that the best possible treatment outcome will be achieved. As an advocate, you will need to
wear multiple hats. You need to learn to network with doctors; to coordinate appointments;

157

to get specialists to talk to each other; to organise a hospital bed; arrange for blood; buy
medicines; fill in medical forms and insurance paperwork; and to act as a caregiver and provide
moral and emotional support.This can be a tall order and may sometimes be a thankless job –
but its well worth it, because your efforts can spell the difference between life and death. And
all these skills can prove to be invaluable when you fall ill yourself.
A “patient advocate” is a critical component in the healthcare delivery chain and a caregiver
is in the best position to know and understand the needs of a loved one. Do you feel you
are underqualified to take on this task? Remember, you already have all the skills you need to
be a patient advocate. It does not require specialised medical training – all it takes are basic
communication skills, the courage to do things differently and the willingness to think through
a problem logically.
The field of Patient Advocacy is booming due to four trends in the healthcare industry:
99 Consumers want assistance in navigating the healthcare system so they can be
active participants in their own health.
99 The healthcare industry is complex, fragmented and not patient- or family-centered.
That makes it difficult for consumers to ensure they’re getting the care they want.
Having an advocate empowers patients to understand and demand the plan of care
that they need.
99 Due to escalating healthcare costs, consumers have become more savvy shoppers,
who want to ensure that they will get the healthcare they need in the most efficient
and cost-effective manner possible.
99 Trust in healthcare has eroded to the point that consumers are looking for trusted
professionals for assistance in navigating the complicated healthcare landscape.
Keep in mind that being a patient advocate is not an adversarial position. As mentioned
elsewhere in this book, it doesn’t necessarily mean rushing out and getting a second opinion
on every matter, or conducting your own research and confronting a healthcare professional
with your findings. This doesn’t mean you shouldn’t seek second opinions, or do your own
research. On the contrary, this is often a wise approach. If you do decide to do your own
research or obtain a second opinion, please speak with your doctor about it. Effective patient
advocates do not breed discontent – they build and strengthen relationships.

158

32. Summing Up
What are some of the common mistakes a patient advocate may make?
1. Fail to get consent to act as a patient advocate.
2. Fail to recognise the patient’s preferences or personal communication style.
3. Fail to recognise that behind every medical goal is a personal goal.
4.
Plant seeds of mistrust between the patient and the doctor. This book will help you
avoid some of those mistakes.
Finally, you need not be an advocate just for a friend or family member.You can reach out and
touch many patients, if you are willing to do so.Thus, if you suffer from a particular illness, you
can setup a support group to raise funds and help others; or create a website to generate
more awareness about the illness. Many people also find volunteering in a hospital allows you
to help those less fortunate than you – and helping others is a great way of helping yourself.
It’s emotionally gratifying work that you will never regret giving your time, training and energy
to.

159

33. Additional Resources

Designation of Patient Advocate Form
To my family, doctors, and all concerned with my care.
These instructions express my wishes about my medical care.

Appointment of Patient Advocate
I, __________________________________________________________________
Appoint the following person to be my Patient Advocate:
Patient Advocate’s Name ______________________________________________
Address ____________________________________________________________

Instructions for Care
1. General Instructions:
My Patient Advocate shall have the authority to make all decisions and to take all actions
regarding my care, custody, and medical treatment, including but not limited to the following:
a. Have access to, obtain copies of and authorise release of my medical, mental health and
other personal information.
b. Employ and discharge physicians, nurses, therapists, any other health care providers,,
and arrange to pay them reasonable compensation.
c. Consent to, refuse or withdraw for me any medical care; diagnostic, surgical, or
therapeutic procedure; or other treatment of any type or nature, including life-sustaining
treatments.

161

2. Specific Instructions
My Patient Advocate is to be guided in making medical decisions for me by what I have
told him/her about my personal preferences regarding my care. Some of my preferences are
recorded below and on the following pages.
A. Specific Instructions Regarding Care I DO want.
___________________________________________________________________
___________________________________________________________________
___________________________________________________________________
_________________________________
B. Specific Instructions Regarding Care I DO NOT want
___________________________________________________________________
___________________________________________________________________
___________________________________________________________________
_________________________________
C. Specific Instructions Regarding Life-Sustaining Treatment
___________________________________________________________________
___________________________________________________________________
___________________________________________________________________
_________________________________
D. Speciﬁc Instructions Regarding Anatomical Gifts
My Patient Advocate has the authority, upon or immediately before my death, to make an
anatomical gift of all or a part of my body for transplantation needed by another individual; for
medical education and research; for anatomical study; or for any other purpose permitted by
law. This authority granted to my Patient Advocate shall remain following my death.

162

33. Additional Resources
E. Any Other Speciﬁc Instructions
___________________________________________________________________
I am providing these instructions of my free will. I have not been required to give them in
order to receive or have care withheld or withdrawn. I am of sound mind.
Signature___________________________________
Date__________________________
Name ______________________________________________________________
Address_____________________________________________________________________

Template Résumé when applying for a job as a Patient Advocate
99 Name
99 Address
99 Telephone Number
99 Cell Phone Number
99 E-mail
99 Web Site
JOB TITLE SOUGHT: Patient-Advocate
JOB OBJECTIVE:
Job Accomplishments by Organization:
99 Job Title
99 Name of Organization
99 Address
99 Telephone Number
99 Supervisor’s Job Title and Name
99 Dates of Employment
99 Salary

163

Career Accomplishments/ Responsibilities:
Education:
99 School
99 Degree/Certificate
99 Extracurricular Activities
99 Continuing Education
Registrations, Licenses, Certifications:
Special Knowledge, Abilities, Skills:
Professional Organisations:
Publications:
Awards/Honours:
References:
1.
2.
3.

164

FREQUENTLY ASKED QUESTIONS ABOUT
PATIENT-ADVOCATES

Who is a patient advocate?
Someone to whom you assign decision-making powers to act on your behalf in a medical
scenario.

When do I need a patient advocate?
When you are unable to participate in medical treatment decisions yourself. Until that time,
you make your own decisions directly.

How might I become unable to participate in medical or mental health decisions?
You might have a temporary loss of ability to make or communicate decisions if, for example,
you had a stroke or were knocked unconscious in a car accident.You might suffer permanent
loss through a degenerative condition, such as dementia. You might become unable to make
mental health decisions if a condition such as severe depression or schizophrenia affected
your mood or thought process.

Who determines I am no longer able to participate in these decisions?
The doctor responsible for your care (along with another independent doctor who examines
you) will make that determination in the case of medical decisions. Your family members can
also seek the help of a patient-advocate, if they feel vulnerable and find it difficult to negotiate
the complex processes at the hospital you are admitted in.

What powers can I assign to a patient advocate?
You can give a patient advocate power to make those personal care decisions you normally
make for yourself. For example, you can give your patient advocate power to consent to or
refuse medical treatment for you; arrange for mental health treatment, home health care or

165

adult day care; or admit you to a hospital, nursing home or home for the aged. You can also
authorize your patient advocate to make a gift of your organs or body, to be effective upon
your death.

Will my patient advocate have power to handle my financial affairs?
You can give your patient advocate power to arrange for medical and personal care services,
and to pay for those services using your funds. Your patient advocate will not have general
power to handle all your property and finances.

Can I give my patient advocate the right to withhold or withdraw treatment
that would allow me to die?
Yes, but you must express in a clear and convincing manner that your patient advocate is
authorised to make such decisions, and you must acknowledge these decisions could or
would allow your death.

What if I don’t express any specific wishes concerning medical treatment?
Your patient advocate must then make decisions about your medical care in what he believes
is in your best interests.

Will a hospital allow my patient advocate to review my records?
Yes. A patient has the right to inspect and copy his hospital records.Your patient advocate has
the same right you have, once you have granted this to him, and are unable to participate in
treatment decisions.

Whom can I appoint as patient advocate?
Any person age 18 or older is eligible; you can appoint your spouse, an adult child, a friend or
other individual.You should choose someone you trust, who can handle the responsibility, and
who is willing to serve.

Can I appoint a second person to serve as patient advocate in case the first person is unable to serve?
Yes. It is a good idea to do so.

What does a patient advocate need to do before acting in my behalf?
Before the patient advocate can act, he or she must sign an acceptance. This can be done at
the time you complete the document.

166

FREQUENTLY ASKED QUESTIONS ABOUT PATIENT-ADVOCATES

Is there a required form for the document?
No. You may choose to use the sample form that we have given in this book, after making
suitable changes in accordance with your specific medical needs.

Once I sign, can I later change my mind?
Yes.You may want to name a different patient advocate or alter the expression of your wishes.
So long as you are of sound mind, you can sign a new document and then destroy the old one.
Regardless of your physical or mental condition, you can revoke or cancel the document if it
does not reflect your current wishes. Also, any spoken wish to have a specific life-extending
treatment provided must be honoured by a patient advocate, even if the wish contradicts a
written directive.

Can my patient advocate refuse to act in my behalf?
Yes. A patient advocate can revoke his acceptance at any time. If so, your named successor
would become patient advocate.

What if there is a dispute when my patient advocate is making decisions for
me?
If an interested person disputes whether the patient advocate is acting in your best interests,
or has the authority to act in your behalf, the interested person may petition the local court
to resolve the dispute.

What if I regain the ability to participate in medical decisions?
You can suspend the powers of your patient advocate during the time you are able to
participate in decisions.

What if I have no one to appoint as a patient advocate?
You can write an advance health care directive (also known as a living will), which is a set of
written instructions you give that specifies what actions should be taken for your health if
you are no longer able to make decisions due to illness or incapacity. You can see a model of
a living will at http://www.agingwithdignity.org/. You can also create a durable power of attorney
for health care, where you empower an agent (known as your health care proxy) to make
health care decisions for you.

167

Patient Advocacy - Giving Voice to the Patient

Recommended

More Related Content

What's hot (20)

Similar to Patient Advocacy - Giving Voice to the Patient (20)

More from Dr Aniruddha Malpani (20)

Recently uploaded (20)

Patient Advocacy - Giving Voice to the Patient