1.
Patient Advocacy
Giving Voice to Patients
Dr Aniruddha Malpani

2.
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

3.
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

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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

5.
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

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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.

7.
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!
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8.
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
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9.
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

10.
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.
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11.
Patient Advocacy Giving Voice to Patients
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
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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

13.
Patient Advocacy Giving Voice to Patients
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
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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
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Patient Advocacy Giving Voice to Patients
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
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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

17.
SECTION 1
UNDERSTANDING
THE RIGHTS OF
PATIENTS

18.
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
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Patient Advocacy Giving Voice to Patients
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

20.
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

21.
Patient Advocacy Giving Voice to Patients
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

22.
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.”

23.
Patient Advocacy Giving Voice to Patients
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

24.
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

25.
Patient Advocacy Giving Voice to Patients
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

26.
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

27.
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

28.
Patient Advocacy Giving Voice to Patients
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

29.
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

30.
Patient Advocacy Giving Voice to Patients
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

31.
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

32.
Patient Advocacy Giving Voice to Patients
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

33.
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

34.
Patient Advocacy Giving Voice to Patients
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

35.
SECTION 2
PATIENT
ADVOCATE’S
RESPONSIBILITES
TOWARDS
CRITICALLY ILL
PATIENTS

36.
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.

37.
Patient Advocacy Giving Voice to Patients
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

38.
7. Caring for the Seriously-ill
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

39.
Patient Advocacy Giving Voice to Patients
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

40.
7. Caring for the Seriously-ill
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

41.
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

42.
Patient Advocacy Giving Voice to Patients
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

43.
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.
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44.
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.
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45.
Patient Advocacy Giving Voice to Patients
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.”
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46.
9. How to Deliver Bad News
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.
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47.
Patient Advocacy Giving Voice to Patients
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

48.
9. How to Deliver Bad News
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.
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49.
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.
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Patient Advocacy Giving Voice to Patients
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.

51.
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

52.
SECTION 3
WHEN YOU
ARE YOUR
OWN PATIENTADVOCATE