Improving

End-of-Life Care &

Decision-Making
Information guide to facilitate execution of
End-of-Life Decisions
- For Doctors and Hospital Administrators
 Foreword
“Indians die badly”- This was brought home democracy handles personal choice. Death
by the Quality of Death reports of The and dying are both intensely personal and
Economist in 2010 and 2015. This does not social experiences. Last year’s Supreme Court
seem to depend on money alone as can be judgment validating Living Wills lets Indian
attested by many of us who have had an citizens take charge of their last days. As an
elderly relative pass away in a hospital ICU. advocate for policy reforms, Federation of
Healthcare in India has improved with the Indian Chamber of Commerce and Industry
best technology being available at Indian (FICCI) sees it as part of its mandate to assist
hospitals at lower costs from developed in systemic and regulatory reforms in this
countries. But the revolution in End-of-Life area by bringing the matter to attention of
Care has passed us by. the policy makers, healthcare industry and
the public at large. In 2015, the Indian
Low public health spending on primary care
Association of Palliative Care, the Indian
and the lack of insurance cover have seen the
Society of Critical Care Medicine and the
cost of dying rise significantly in the past two
Indian Academy of Neurology came
decades. But the unknown known or a
together to form the End of Life Care in India
bigger missing element is the lack of
Taskforce (ELICIT), which has provided
capacity in our system for providing palliative
technical assistance for drafting the
and compassionate end-of-life care. It is also
Information Guides to facilitate execution
because as a society we have not addressed
of End-of-Life Decisions.
adequately the complex issue of when to ‘let
go’ when the time comes, avoiding Disclaimer: This document has been
burdensome non-beneficial treatments. Put developed and compiled by experts from the
together, these lead to catastrophic health health sector for assistance of Doctors and
expenses. Healthcare providers are often Hospital Administrators with simple
blamed, correctly or incorrectly, when practical steps for end-of-life decision
medical futility results in death and debts; making within the framework of Indian Law
this further feeds into the wider narrative and Constitution. Information provided in
and public anger about the inequities in our this document is not intended to supplant or
healthcare system. supersede any applicable Law/s. In the event
of any conflict between the information
The recent Supreme Court judgments on
provided in this document and those
privacy and autonomy have brought us to
prescribed under any applicable Law/s, the
the cusp of evolution in how a constitutional
latter shall prevail.
 End-of-Life Care and
Decision-Making
Ensuring a Death with Dignity

Dying at place
of choice and
Applicability receiving
to any Person, appropriate
any Place and care by a
any Illness trained
End-of-Life healthcare
provider
Care (EOLC)
involves
Relief of Universal access to
Physical, standard palliative
Psychological, care at end-of-life
Social, Spiritual and the right of every
and Existential individual to a good,
symptoms peaceful and
dignified death

l End-of-Life Care (EOLC) is a person is spared the iatrogenic burdens and

centred, personalized perception of suffering associated with technological
“Good Death” which encompasses all interventions aimed at sustaining life
aspects of comprehensive care of an
l Disproportionate treatment is especially
individual at his/her end-of-life1
rife in ICUs where it is estimated to
l EOLC is an integral part of medical care constitute at least one-fourth of all
and is an important quality requirement interventions3
for accreditation of hospitals by the
l Standard treatment and evidence-based
NABH in its 4th Edition of published list2
guidelines recommend weighing benefit
l It is recognized worldwide that in the last vs harm associated with the medical
phase of illness, goals of treatment treatment. Appropriate withdrawal and
change from focusing on cure to giving withholding is a part of everyday decision
care, avoiding any disproportionate making for critically ill patients4
treatments. Thus, a terminally ill patient
Legal Provisions
in India

Patient’s Rights Physician

l The right to refuse treatment is Obligations
Co m m o n L aw a n d i s f u r t h e r
strengthened by the Law
Commission recommendations l According to bioethical norms in
and two of the recent Supreme today’s practice 7 , the physician
Court judgments: must integrate the four cardinal
principles of:
l In Justice Puttaswamy vs The
Union of India, the right to privacy
was declared an independent
fundamental right which further Autonomy
protects patient Autonomy5
Beneficence Justice
l In Common Cause vs The Union of
India, the Supreme Court clarified Non-
the legal validity of Living Will or Maleficence
Advance Medical Directive (AMD)
and appropriate withdrawal or
withholding of life support also l Respect for autonomy is central to
called Foregoing of Life Support all medical practice today.
(FLS)6 Interventions despite the refusal of
l The Indian patient/citizen has the the patient or his/her surrogates
right to execute an AMD that will could be deemed as battery by the
be operational when he/she loses law
decision-making capacity. l Like consent, refusal should also be
Appropriate withdrawal or duly documented
withholding of life support will not
attract criminal liability l Physicians should be guided by
4
standard treatment guidelines on
l B y I n te r n a t i o n a l co n s e n s u s , EOLC while weighing the benefit
patients do not have the right to and harm of providing life-
demand treatments that are not sustaining treatment
considered appropriate by their
healthcare provider, as these are
essentially medical decisions
 Legal Provisions
in India
On Issues Related to FLS
l In the Aruna Shanbaug case8, ‘passive However, the procedure for implementation
euthanasia’ or FLS was legally permitted remains problematic. It is required that a
within certain safeguards, for the first duly executed AMD be countersigned by
time in India the Judicial Magistrate of the First Class
(JMFC) and physical and digital copies of it
l For a competent patient, refusal of
be preserved by the relevant District Court.
treatment must be honored. However, if a
Further requirements in implementing FLS
patient is incompetent, the Supreme
need:
Court laid down a procedure involving
the High Court. Since the real-world l A preliminary opinion by a hospital
requirements are for decisions within Medical Board
hours or a few days, this provision has l Confirmation of this opinion by an
remained unutilized since the judgment external Medical Board to be
in 2011 constituted by the jurisdictional
Collector
l In the Common Cause vs The Union of
l Implementation of the AMD and FLS
India6, AMD and FLS decisions were held
decision after the JMFC actually visits
valid
the patient
 Recommendations of
National & International
Professional Societies

l ISCCM-IAPC (Indian Society of Critical l When consensus decision is for the

Care Medicine and Indian Association of palliative care option, the modalities of
Palliative Care) guidelines published in treatment limitation (allow natural
2014 recommend a deliberate procedure death, withdrawal or withholding) are
to arrive at a treatment limitation discussed and the final decision is
decision9 documented

l As elsewhere in the world4, the physician l When the patient no longer has the
and caregiver team first identify the capacity to make a decision, FLS decisions
terminal nature of the illness are taken by at least three physicians with
o n e o r m o r e o f fa m i l y m e m b e r s /
l Respecting patient autonomy, the
surrogates through the process of
patient/family/surrogates* are informed
“shared decision-making”#
openly and sensiti ve l y a b o u t t h e
prognosis through one or more l Established guidelines inform the actual
counselling sessions. This could be an implementation, ensuring comfort and
iterative process until the situation is freedom from distressful symptoms for
reasonably clear the patient

l The patient/surrogates are also apprised l Referral to a Hospital EOLC Committee is

of the treatment options and transitioning required only for dispute redressal and
wholly to palliative care oversight

*Surrogate: Person(s) other than the healthcare providers who is/are accepted as the representatives of the
patient’s best interests, who will make decisions on behalf of the patient when the patient loses decision-
making capacity

# Shared Decision Making is defined as ‘A dynamic process with responsibility for decisions about the
medical care of a patient being shared between the health care team and the patient or the patient’s
surrogates’
 Action Plan:
End-of-Life Care and
Decision-Making
- For Doctors and Administrators
Respect a competent patient's decision
When the patient who is competent refuses treatment this should be honored.
Respecting the patient's decision is required by the law. This decision should be respected
even if the patient's family members express a different opinion regarding FLS.

Opt for shared decision making, if overriding an AMD is in the patient's best interest
If the patient is incompetent but has a valid AMD, this must be honored as far as possible. If
there are valid grounds to override the same in the best interests of the patient, a consensus
through shared-decision making should be arrived at, between caregivers and surrogates
which should be duly documented.
Base the decision on wishes of the patient as well as the prognosis, when
no AMD is available
If there is no AMD available, decisions between care givers and surrogates must be based
on the 'values and wishes' of the patient as known to the family as well as the prognosis
and best interests of the patient as judged by the treating doctors.
Only under exceptional circumstances, such as when a person is in a persistent
vegetative state, can the Court-recommended procedure be implemented. For example,
in a case of terminal cancer with imminent death, decision not to put the patient on a
ventilator needs to be taken within hours or few days. In the common scenario, the FLS
decisions must be based on refusal of consent for either initiation or continuation of life
sustaining treatment in such cases. All decisions must also be duly documented to ensure
transparency.

Certify and document Brain Death in accordance to the Transplantation of

Human Organs and Tissues Act, 1994
Brain death should be certified and documented in the manner laid down in
the Transplantation of Human Organs and Tissues Act, 1994* irrespective of whether there
is consent for organ donation or not. This is in conformity with internationally accepted
definitions of death. This position in Law was further reiterated in the Aruna Shanbaug
Judgement#. When brain death has been so certified, the patient can be disconnected
from life support unilaterally after informing and counselling the family.

*Transplantation of Human Organs and Tissues Act, 1994, a "deceased person" means a person in whom
permanent disappearance of all evidence of life occurs, by reason of brain-stem death or in a cardio-
pulmonary sense, at any time after live birth has taken place.

#Aruna Ramchandra Shanbaug v Union of India and Others P 82, para 106: ….“It follows that one is dead
when brain dead…”
 Flowchart for
End-of-Life
Decision-Making
Accurately identify
terminal illness,
Establish consensus
the prognosis and
among all healthcare Determine competence of patient
inappropriateness of
providers
life sustaining
interventions

Competent Incompetent

AMD Available AMD Not Available

Work with appointed Identify appropri-

healthcare proxy/next of kin ate surrogate

Implement plan Honest disclosure of terminal illness,

for Withdrawal/ prognosis and inappropriateness of
Review the Withholding life life sustaining interventions
No Conflict
care process support,
palliative care,
after death care,
‘Shared Decision Making’4 with
bereavement
open and repeated discussions
care

Conflict resolution process Conflict

 Resolution of Conflict
Authoritative policy statements10 recommend that requests for potentially inappropriate
treatment (including both Withholding/Withdrawal of Life Support and continuation of
treatment) from families that remain inflexible despite intensive communication and
negotiation should be approached by a seven-step process:

Enlist expert consultation to

continue negotiation during the
dispute-resolution process Give notice of the
process to surrogates

Obtain a second
medical opinion

Offer surrogates
Perform review by
the opportunity to
an interdisciplinary
transfer the patient
hospital committee
to an alternate
institution
Inform surrogates
of the opportunity
to pursue judicial
remedies

Implement the decision

of the judicial process
Additional
requirements
from Hospitals

Administrators’ Hospital EOLC

Duties Committee
l Provide training of healthcare A typical Hospital EOLC Committee
professionals and members of the to facilitate/oversee FLS decisions
hospital EOLC committee may be constituted with the
l P u t i n p l a ce a n a p p r o p r i a t e following members:
process for end-of-life decision- l The Director or his nominee of the
making ICU at a Medical Facility who is not
l Create the necessary infrastructure part of the team treating the
for providing EOLC and palliative patient
care l The Chief Administrator or his
l Ensure maintenance of records nominee of a Medical Facility who
is not part of the team treating the
l Devise a mechanism to facilitate patient
conflict resolution
l An invited independent senior
physician who has relevant
experience, but is not a staff or
other wise employed by the
Medical Facility

l A legal expert appointed by the

Medical Facility

l A lay person preferably involved in

social service
 References &
Resource Material
References:
1. WHO Definition of Palliative Care; https://www.who.int/cancer/palliative/definition/en/
2 . N a t i o n a l Acc r e d i t a t i o n B o a r d fo r H o s p i t a l s ( N A B H ) . J u l y 2 0 1 6 ( 4 t h E d i t i o n )
http://www.nabh.co/NABHStandards.aspx
3. Piers RD, Azoulay E, Ricou B, DeKeyser G F, Max A, Michalsen A..Inappropriate care in European
ICUs: confronting views from nurses and junior and senior physicians. Chest. 2014; 146:267-275.
doi: 10.1378/chest.14-0256
4. Sprung CL, Trough RD, Curtis JR, Joint GM, Barras M, Michelson A, Brie gel J, Kesecioglu J,
Efferen L, De Robertis E, Bulpa P, Metnitz P, Patil N, Hawryluck L, Manthous C, Moreno R,
Leonard S, Hill NS, WennbergE, McDermid RC, Mikstacki A, Mularski RA, Hartog CS, Avidan A.
Seeking worldwide professional consensus on the principles of end-of-life care for the
critically ill: the WELPICUS study. Am J Respir Crit Care Med. 2014; 190(8):855–66.
doi:10.1164/rccm.201403-0593CC
5. Reportable in the Supreme Court of India Civil Original Jurisdiction. Writ Petition (Civil No. 494
of 2012. Justice K Puttaswamy vs Union of India)
6. Reportable in the Supreme Court of India Civil Original Jurisdiction. Common Cause Vs The
Union of India. Writ Petition (Civil) no. 215 of 2005
7. Beauchamp TL, Childress JF (Eds). Principles of Biomedical Ethics, 7th ed. ISBN:
9780199924585.Oxford University Press; 2013
8. Aruna Ramchandra Shanbaug v Union of India and Others (2011) 4 SCC 454
9. Myatra SN, Salins N, Iyer S, Macaden SC, Divatia JV, Muckaden M, Kulkarni P, Simha S, Mani RK.
End-of-life care policy: An integrated care plan for the dying. Ind J Crit Care Med 2014;18:615-635
10. Bosslet GT, Pope TM, Rubenfeld GD, et al; American Thoracic Society ad hoc Committee on
Futile and Potentially Inappropriate Treatment; American Thoracic Society; American
Association for Critical Care Nurses; American College of Chest Physicians; European Society
for Intensive Care Medicine; Society of Critical Care: An Official ATS/AACN/ACCP/ESICM/SCCM
Policy Statement: Responding to requests for potentially inappropriate treatments in
intensive care units. Am J Respir Crit Care Med 2015; 191:1318–1330
Resource Material:
1. Definition of terms used in limitation of treatment and providing palliative care at end-of-life.
Indian Council of Medical Research; March 2018. [cited 2019 April 25]
2. Lisa J Shultz. A chance to say goodbye: reflections on losing a parent. High Country publications
2017. [Cited 2018 May 21].
3. The 2015 Quality of Death Index. Ranking palliative care across the world. A report of
Economic Intelligence Unit, Lien Foundation; 2015 [cited 2017 July23]. Available from:
http://www.ara.cat/societat/EIU-Quality-Death-Index-FINAL_ARAFIL20151006_0002.pdf
4. Truog RD, Campbell ML, Curtis JR, Haas CE, Luce JM, Rubenfeld GD,et al. Recommendations
for end-of-life care in the intensive care unit:A consensus statement by the American College
[corrected] of CriticalCare Medicine. Crit Care Med 2008; 36:953-63.
5. Gursahani R, Mani RK. India: not a country to die in. Indian J Med Ethics; 2016 Jan-Mar; 13(1): 30-5.
6. Mani RK, Simha SN, Gursahani R. The advance directives and foregoing of life support. Where
do we stand now? Ind J Crit Care Med 2018; 22:135-7.
List of Abbreviations

AMD Advance Medical Directive

ELICIT End of Life Care in India Taskforce
EOLC End-of-Life Care
FICCI Federation of Indian Chamber of Commerce and Industry
FLS Foregoing of Life Support
IAPC Indian Association of Palliative Care
ICU Intensive Care Unit
ISCCM Indian Society of Critical Care Medicine
JMFC Judicial Magistrate of the First Class
NABH National Accreditation Board for Hospitals &
Healthcare Providers
 Acknowledgements
We are grateful to the following members of the FICCI Task Force on End-of-Life Care and Advance
Will for their guidance and contribution for preparing this information guide:
Chair: Dr Raj K Mani, Medical Director & Chairman-Critical Care & Pulmonology, Batra Hospital
Co-Chair: Dr Arati Verma, Sr Vice President - Medical Quality, Max Healthcare
Advisors: Dr Narottam Puri, Board Member & Former Chairman, NABH and Advisor-Medical
Operations & Chairman- Fortis Medical Council, Fortis Healthcare Ltd.
(Hony) Brig Dr Arvind Lal, Chair, FICCI Health Services Committee and CMD, Dr Lal
PathLabs
Dr Alok Roy, Co-Chair, FICCI Health Services Committee and Chairman, Medica Group
of Hospitals
Mr Gautam Khanna, Co-Chair, FICCI Health Services Committee & CEO, Hinduja Hospital

Members of the Task Force:

l Dr MR Rajagopal, Founder Chairman, Pallium India, Trivandrum, Kerala
l Dr Nagesh Simha, Medical Director, Karunashraya, Bangalore & Honorary Tutor- Palliative Care,
Cardiff University
l Dr Roop Gursahani, Consultant Neurologist and Epileptologist, PD Hinduja Hospital, Mumbai
l Dr Shiva Iyer, Professor and Head-Critical Care Medicine, Bharatiya Vidyapeeth, Pune
l Dr Prof Om Prakash V Nandimath, National Law School, Bangalore
l Dr Naveen Salins, Professor and Head- Department of Palliative Medicine and Supportive Care,
Kasturba Medical College, Manipal
l Dr Rajiv Uttam, Head of Paediatric intensive Care, Max Parparganj, New Delhi
l Ms Harmala Gupta, Founder, CanSupport, New Delhi
l Dr Dhvani Mehta, Senior Resident Fellow and Lead- Public Health, Vidhi Center for Legal Policy
l Dr Gaurav Thukral, Executive Vice President & COO, HealthCare atHome (HCAH)

FICCI Team:
Ms Shobha Mishra Ghosh, Assistant Secretary General, FICCI
Ms Tansi Nayak, Assistant Director- Health Services, FICCI
Ms Sarita Chandra, Deputy Director- Health Services, FICCI
Ms Shilpa Sharma, Consultant - Health Services, FICCI
 About FICCI
Established in 1927, Federation of Indian Chambers of Commerce and Industry (FICCI) is
the largest and oldest apex business organisation in India. Its history is closely interwoven
with India’s struggle for independence, its industrialization, and its emergence as one of
the most rapidly growing global economies.
A non-government, not-for-profit organisation, FICCI is the voice of India’s business and
industry. From influencing policy to encouraging debate, engaging with policy makers
and civil society, FICCI articulates the views and concerns of industry. It serves its
members from the Indian private and public corporate sectors and multinational
companies, drawing its strength from diverse regional chambers of commerce and
industry across states, reaching out to over 2,50,000 companies.
FICCI provides a platform for networking and consensus building within and across
sectors and is the first port of call for Indian industry, policy makers and the international
business community.

About ELICIT
End of Life Care in India Taskforce (ELICIT) Care in India Taskforce was formed as a joint
initiative of the Indian Academy of Neurology, Indian Society of Critical Care Medicine
(ISCCM) and Indian Association of Palliative Care (IAPC) at a meeting held in Mumbai on
15-16 August 2015. Members of this task force have been involved in the following
initiatives and activities:
l Draft End of Life Care legislation covering Advance care planning, Foregoing Life
sustaining treatment (Medical futility) and a Uniform definition of death to cover
brain death. This draft was submitted to the Ministry of Health and Family Welfare in
June 2016.
l Intervenor (Dr Raj Mani) in the Common Cause judgment of 9 March 2018, which
made living wills possible for all Indians.
l Collaboration with the ICMR to prepare a booklet on Definition of terms and to
formulate actionable recommendations for Foregoing Life support
l Collaboration with Manipal Hospital to prepare the Blue Maple document on EOLC
SOPs for the group's hospitals
l Lectures, symposia and courses on End of Life and Palliative care in diverse parts
of the country.
l Setting up a website www.onelittlewish.org for a public conversation