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End-of-Life Care: Consensus Statement by Indian Academy of Pediatrics

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CONSENSUS STATEMENT

End-of-Life Care: Consensus Statement by Indian Academy of Pediatrics


*SUDHIR MISHRA, #KANYA MUKHOPADHYAY, $SATISH TIWARI, ‡RAJENDRA BANGAL, ˆBALRAJ S YADAV,
**ANUPAM SACHDEVA AND ##VISHESH KUMAR

From the *Department of Pediatrics, Tata Main Hospital, Jamshedpur, Jharkhand ; #Neonatal Unit, Department of Pediatrics ,
PGIMER, Chandigarh; $Indian Medico-Legal & Ethics Association; ‡ Smt Kashibai Nawale Medical College, Pune; ˆIYCF
Chapter of IAP; **Sir Gangaram Hospital, New Delhi; and ##WHO Country Office of India; India.
Correspondence to: Dr Satish Tiwari, Yashodanagar no. 2, Amravati, Maharashtra 444606. drsatishtiwari@gmail.com.
Received: July 10, 2016; Initial Review: April 27, 2017; Accepted: August 04, 2017.

Justification: The right to life has been accepted as one of the fundamental rights in our constitution. Resuscitation is a procedure
performed for all patients suffering from cardiac or respiratory arrest irrespective of the clinical condition. There are no legal guidelines
defining process to be adopted in situations where resuscitation is unlikely to be useful. There are no guidelines on withdrawal of care or
end of life (EOL) decisions, accepted by the Government, judiciary, professionals, academicians or the community.
Process: A National Consultative meet was organized by Indian Medico-Legal and Ethics Association and the Medico-legal group of
Indian Academy of Pediatrics (IAP) to formulate the guidelines on ‘Do Not Resuscitate’ (DNR), and ‘End of Life Support’. The meeting was
organized on 30th May, 2014 at Ram Manohar Lohia Hospital, New Delhi. The meeting involved professionals from legal and various
medical fields as well as administrators, and members from Medical Council of India.
Objectives: To frame the guidelines related to EOL care issues and withdrawal or with-holding treatment in situations where outcome of
continued treatment is expected to be poor in terms of ultimate survival or quality of life.
Recommendations: (i) DNR or end of life care should not be activated till consensus is achieved between treating team and the next of
kin; (ii) Consensus within health care team (including nurses) needs to be achieved before discussion with family members; (iii)
Discussion should involve the family members – next of kin and other persons who can influence decisions; (iv) If family members want to
include their family physician or a prominent person from the community, it should be encouraged. Similarly if family members want a
particular member of treating team, he/she should be included; (v) Treating doctors should have all the facts of the case including
investigations available with them before discussion; (vi) Unit in-charge or treating doctor should be responsible for achieving consensus
and should initiate the discussion; (vii) After presenting the facts of the cases, family members should be encouraged to ask questions
and clear doubts (if any); (viii) At the end of discussion, a summary of the discussion should be prepared and signed by the next of kin and
the unit in-charge or treating doctors; (ix) DNR orders should be reviewed in the event of unexpected improvement or on request of next of
kin. Same should be documented; (x) DNR orders remain valid during transport.
Key words: Do-Not-Resuscitate Orders, Euthanasia, Resuscitation, Withholding Life support.

Published online: August 24, 2017. PII:S097475591600089

R
esuscitation is a common procedure refers to acceleration of death by active intervention to
performed in hospitals for all patients alleviate suffering of a person who is in irretrievable
suffering from cardiac or respiratory arrest. situation. It has been amply clarified that euthanasia is
Outcome of resuscitation is better in Pediatric essentially voluntary and any intervention against the
age group than in adults. However, even in children, there will is equivalent to murder [1]. Euthanasia is ‘active’
are situations where hope for an intact survival is poor. when a deliberate intervention is undertaken with the
Often, short term recovery and subsequent intensive care express intention of ending life to relieve intractable
inflicts physical discomfort for patients and family alike. suffering, and ‘passive’ when it involves withholding life
Family members also suffer mental and financial agony. support system for continuance of life [2].
This has been appreciated by healthcare providers across
the world, and efforts have been made to provide End-of-Life care: This refers to care of a person who has
meaningful care and graceful end to life, without painful received a life-limiting diagnosis. It encompasses all
life pending death for patients and feeling of guilt among aspects of care till the final outcome and care of mortal
the parents and family members. remains [3].
DEFINITIONS
Resuscitation: It is the process of restoring the cardiac or
Euthanasia: This word is derived from Greek Eu and pulmonary function back to normal, fully or partially,
thanatos meaning good death. In medical parlance, it after a cardiac or respiratory arrest.

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MISHRA, et al END-OF-LIFE CARE CONSENSUS STATEMENT

Do-Not-Resuscitate (DNR) order: This is a treatment society–physically, financially and psychologically.


decision taken prior to event of cardiac or respiratory 5. There may be situation where limited resources may
arrest, with the consent of patient, or where that is not be denied to a more ‘deserving salvagable
possible, proxy consent of next of kin, where care individual’ because they are ‘in use’ for a vegetative
providers will not provide requisite cardio-respiratory individual.
resuscitation. This does not preclude, or stop to any
degree, normal care and treatment being given to the 6. In some specific situations, there may be need for
patient [4]. withdrawing assisted respiratory support; e.g., in
cases of brain-stem death that is certified by a board of
THE LEGAL FRAMEWORK medical experts.
The Constitution of India, Article 21, provides In spite of the above situations – which happen quite
‘Protection of Life’ and ‘Personal Liberty’. It states that frequently, especially in intensive care unit (ICU) set-up,
“no person shall be deprived of his life or personal liberty cancer patients and in some irreversible chronic
except according to procedure established by law.” conditions – there are no legal guidelines in our country
However, there have been several expansions of article regarding withdrawal of care or EOL decisions. There is
21 and in its expanded form it assures the right to live with also no guideline regarding not to initiate resuscitation in
human dignity. Death is universal but dying in a peaceful conditions where life may not be meaningful after
and dignified manner would be welcome by every resuscitation.
individual.
PROCESS OF FORMING GUIDELINES
Some persons interpreted the right to life as including
right “not to live” or right to death (P. Rathinam v. Union A National consultative meeting was organized at RML
of India, JT 1994(3) SC 392). However in this judgment, Hospital, New Delhi on 30th May 2014, where the
while accepting right-to-die, euthanasia was not participants included experts from various relevant
considered viable and was not permitted. Several other fields like academicians from medical fraternity,
judgments, (Gian Kaur v. State of Punjab, JT 1996 (3) SC practicing doctors, intensivists (adult, pediatric and
339; C.A. Thomas Master vs Union of India, Kerala HC, neonatal), lawyers, persons with both legal and medical
2000 Cri LJ 3729) have held that right-to-life as enshrined qualifications, administrators and members from
in constitution article 21 does not confer right-to-death. In regulatory bodies. Stakeholders like Government of
a recent judgment on a Public Interest Litigation (PIL), India, Medical Council of India, social organizations,
Rajasthan High court two judge bench upheld the PIL and and legal and medical fraternity were represented.
held the Jain religious practice of “Santhara or Sallekhana Representation from various medical disciplines
— a practice of deliberate starvation to death” as included Pediatrics, Anesthesia, Oncology, Cardiology
unconstitutional, and to treat it as suicide punishable and Intensive care.
under section 309 [5].
The consultative meet had four sessions: First session
WHY DO WE NEED END-OF-LIFE (EOL) DECISIONS? was on legal issues in relation to end-of-life care,
There are many situations when patients with protection of patient rights and rights of medical
irreversible or end-stage diseases (where there is very professional, laws related to right to life and deaths.
little chance of recovery) remain, on assisted ventilation Presentation included cases dealt by Hon’ble Supreme
for days, weeks or months. This is associated with court including judgments. Second session focused on the
several conflicts: issues related to care towards the end-of –life, especially
in terminally ill patients. Third session reviewed currently
1. This results in prolongation of ‘vegetative life’ that available guidelines and literature on the subject. In last
may be a source of misery for everyone, especially for session, issues on various aspects of the topic were
the patient and the family. discussed. Points agreed upon were reiterated and those
lacking consensus were further discussed and a broad
2. There is a lowering of ‘dignity of death’ due to futile consensus was achieved. Summary guidelines were
invasive procedures and unnecessary treatment. prepared and presented. A writing committee was
3. There may not be any chance of improvement or designated. Draft of the write-up was prepared by two
survival leading to wastage of resources. members of the writing committee, and was circulated
among all members. Suggestions were incorporated in the
4. It may be a significant burden for the family or final write-up.

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MISHRA, et al END-OF-LIFE CARE CONSENSUS STATEMENT

END-OF-LIFE CARE condition over another for whom treatment may be futile.
End-of-Life Care is defined by National Council for In cases of resuscitation of newborn, the autonomy of
Palliative Care UK [6] as “Helps all those with newborn and to take decision in life threatening
advanced, progressive, incurable illness to live as well as emergency situations are both exceptions of general rules
possible, until they die. It enables the supportive and of ethics.
palliative care needs of both patient and family to be
Dilemma in EOL Decisions
identified and met throughout the last phase of life and
into bereavement. It includes management of pain and While dealing with a situation that may warrant EOL
other symptoms and provision of psychological, social, care decision or discussion, considering above
spiritual and practical support.” mentioned principles, dilemma arise in the mind of
treating doctor. These may be summarized as below:
This essentially means not taking up intensive care in
the event of a cardiac or respiratory arrest but does not Legal dilemma
deny continued care, nutrition by oral or oro-gastric or
A reasonable amount of certainty is required to take
naso-gastric route, pain relief, physiotherapy and other
decisions regarding EOL because the probability of
comfort care. It does not mean abandoning a patient after
dying is not always clear. In many countries, there are set
an EOL Care decision is taken.
guidelines about when to initiate EOL discussion;
Ethical Principles however, we do not have definite guidelines agreed upon
by professional bodies. There can be questions in
While taking decisions for EOL in any critically sick
relation to which patients can be ascribed as
patient, four ethical principles must be followed [7]:
‘approaching the end of life’. GMC guidelines [9]
Autonomy means an individual’s rights of freedom suggest that if a person is likely to die in a period of one
and liberty to make changes that affect his or her life. In year, he/she may be considered as ‘approaching the end
the right to self-determination, the informed patient has a of life’.
right to choose the manner of his treatment. In pediatric
Ethical dilemma
and neonatal patients either the parents or a legal guardian
can take such decisions. Ethical dilemma arises when the opinions are at
variance; e.g. one child or parent of the diseased may
Beneficence is acting in what is (or judged to be) in
have difference of opinion from the other. It may so
patient’s best interest. The physician is expected to act in
happen that the diseased person is a minor, but is old
the best interests; his responsibility extends beyond
enough to understand and his/her opinion is different
medical treatment to ensure compassionate care during
from parent(s). In another situation, opinion of the
the dying process. The physician’s expanded goals
parent(s) may be detrimental to the baby.
include facilitating (neither hastening nor delaying) the
dying process, avoiding or reducing the sufferings of the Most of this dilemma can be solved with clear thought
patient and his family, providing emotional support and process, involvement of senior most physicians in the
protecting from financial loss. “The best interest calculus team, and good communication with the next of kin.
generally involves an open ended consideration of factors However, in Indian social setup, where everyone wants to
relating to the treatment decision, including the patient’s do ‘the best’ till the end for social reasons, it may still be
current condition, degree of pain, loss of dignity, difficult to achieve consensus among family members. In
prognosis and the risks, side effects and benefits of each such situation, DNR or EOL should not be activated till
treatment’’ [8]. consensus is achieved.
Non-malfeasance means to do no harm, to impose no DO NOT RESUSCITATE
unnecessary or unacceptable burden upon the patient.
Do Not Resuscitate (DNR) is a clear concept in most
This is subject to varied interpretation, as the same act
developed countries [10]. It does not involve
may be considered as harmful or beneficial depending on
withdrawing life support system where a patient is
the circumstances.
already on ventilator or inotropes. It also does not
Distributive justice means treating patients truthfully involve discontinuing routine care like oxygen, nutrition,
and fairly. Physicians need to take a responsible decision fluids (oral intravenous). DNR is like any other treatment
and to make good use of the infrastructure, finances and decision, and must be adequately documented and
human resources. The physician may thus provide communicated to all team members for effective
treatment and resources to one with a potentially curable implementation. In India, so far we do not have a clear

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MISHRA, et al END-OF-LIFE CARE CONSENSUS STATEMENT

legal guideline and accepted method of documentation being taken and have given written consent for the same.
of DNR [11]. Discussion should involve senior member of the medical
team, preferably unit in - charge or the treating doctor.
There are two more terms used in this relation;
The withdrawal of support should never be done to
‘withhold LST (Life-sustaining Treatment Measures)’,
facilitate use of equipment for another patient who may
and ‘withdraw LST’.
be potentially salvagable. This should never be used as
Witholding LST: LST, especially ventilation, central line an argument for counseling for withdrawal of support.
placement and renal replacement therapy, require The principles and components of ‘good death’ have
consent. Except in the event where none from family is been elaborated in Box 1. These have been modified
available, and clinical condition of the patient is life- from the guidelines of Indian Society of Critical Care
threatening, these should not be initiated without consent. Medicine and Indian Association of Palliative Care [14,
While obtaining informed consent, it is required to 15].
inform the patients or attendants about the possible
Clinical Aspects of DNR
outcome, need or futility of the intervention, what can be
expected as a result of such intervention and the cost Who are the candidates for DNR?
likely to be incurred (where applicable – likely to be paid
It can be said that situations where resuscitation is not
by the family) in the process. The same should be
likely to lead to prolonged and useful survival, are the
documented. Only after such informed consent, if the
candidates for DNR (Box 2).
patient or relatives insist on continued intervention, these
should be undertaken. Care should be exercised that Who are not the candidates for DNR?
refusal of such consent should not result in dilution of
DNR should not be activated where:
basic care to the patient and judgmental statements are
not made by the staff working in the unit, which can result • patient is unable to pay for advanced care
in feeling of guilt.
• the outcome is doubtful (may or may not improve
Withdrawing LST: Withdrawing life sustaining treatment situation)
is more difficult. It should always be done with clear and
• there is conflicting opinion among the family
repeated discussion till parent(s) or next of kin
members
understand the consequences and concur with the actions
• responsible next of kin is not available for discussion
Box 1 PRINCIPLES OF GOOD DEATH • written consent is not available
• To understand the possible time of death
• To be in control of the situation at the time of death
• To die with dignity and privacy to the extent
desired Box 2: WHO ARE THE CANDIDATES for DNR
• To be able to get pain relief, control over other • Where life sustaining treatment is likely to be
symptoms and care including hospice care where ineffective or futile.
available
• Where patient has prolonged unconsciousness
• To be able to choose the place of death which is unlikely to recover.
• To have access to desired information and • Where patient has a terminal condition for which
expertise there is no definitive therapy.
• To have access to support required including • Where patient has a chronic debilitating disorder
spiritual and emotional support where burden of resuscitation far outweighs the
• To be able to decide about the presence of near benefits.
and dear ones and who share the end ·• Where medical treatment appears futile. Futile
• To be able to issue advanced directive ensuring medical treatment is generally defined as “where
that one’s wishes are respected* treatment is useless, ineffective or does not offer
• To avoid pointless prolongation of life a reasonable chance of survival” [12].
* Such provisions do not exist in India. At present, there • Such other factor that may be unique to the patient
is an appeal admitted to the Supreme Court on the issue e.g., where patient has made an informed living
of allowing advance directive. will to refuse CPR [13].
Modified from Reference number 14 and 15

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MISHRA, et al END-OF-LIFE CARE CONSENSUS STATEMENT

treatment options, this must be honored. Where family


Box 3 WHAT IS DONE AND WHAT IS NOT DONE IF DNR
IS ACTIVATED [14]
agrees with DNR decision, it may be implemented if the
baby is found to have expected situation/problem. The
Even with DNR orders, a health worker will provide decision of DNR may be reversed if doctor finds baby’s
basic support in the form of: condition to be different from what was antenatally
• Clear airway expected. This should also be explained to parent(s)
• Provide Oxygen during discussion on DNR.
• Position for comfort Where there had been no opportunity for discussion
• Splint with parents, baby should be resuscitated fully except in
• Control bleeding gross anomalies that are incompatible with life e.g.,
• Provide pain medication anencephaly [17] or prematurity that is not compatible
• Provide emotional support
with life. Decision on prematurity depends on period of
viability. With improving survival of babies with lower
• Contact hospice or hospital (as hospice facility is
gestational age [18,19] definition of period of viability
hardly available in India)
has become more difficult. This decision should be based
• With DNR orders, a health care worker is not
on local survival data and possibility of intact survival in a
required to
given setup. However, as a general norm, it can be said
• Perform chest compressions that 24 weeks gestation babies are regularly surviving
• Insert advanced airway [18] in many centers in our country where tertiary care
• Administer Cardiac resuscitation drugs facilities are available and therefore any baby above this
• Provide ventilator assistance including gestation age must be resuscitated in such centers. In
noninvasive ventilation centers where tertiary care facilities are not available,
• Defibrillate babies below 28 weeks gestation are not likely to survive.
In such a situation, subsequent management options
should be discussed with parents and a decision to
resuscitate may be taken based on feasibility of transfer to
What is done and what is not done if DNR is activated
a tertiary care neonatal unit. It would be prudent to
[16] is listed in Box 3.
attempt ‘in utero’ transfer in such situations.
DNR Issues in Neonates
Decision in neonatal units
Neonates are in a special situation with respect to
DNR issues faced in neonatal units are qualitatively
resuscitation and DNR orders. A clinician may face this
same as faced in other intensive care units. However,
situation right at the time of birth or subsequently during
frequency of congenital anomalies in neonatal units is
treatment. At the time of birth, condition of the baby may
high and is a prominent reason for a DNR order. In a
be anticipated or may not be anticipated and arise
study from Oman [20], lesions that will not allow
suddenly. Like in all other situations, social, emotional
meaningful survival (18 of 39) and lesions incompatible
and cultural environment would affect DNR decisions.
with life (15 of 39) were the reasons for a DNR order.
Decisions at the time of birth Gestational age related reason (below 24 weeks
gestation) was present in only 3 of 39 babies where DNR
At the time of birth, two broad situations may demand a
orders were given. This study also highlighted that
decision. First is a baby with congenital anomaly or
parents were more comfortable accepting non-initiation
anomalies that are incompatible or may be compatible
of ventilator support (14 of 20 cases where it was
with life, but the expected quality of life may be poor or a
proposed) than withdrawal of ventilator support (2 of 19
big drain on resources of family/society. Second
cases). In this study, 36% of deaths were preceded by a
situation is where the birth weight and gestational age is
DNR order. This is far less than some of the western
such that survival, especially intact survival, may be
studies [21] where the frequency was as high as 68%.
almost impossible. Where congenital anomalies are
known before birth and the time permits, DNR decisions In India, there are hardly any studies on this subject.
should be discussed with parent(s) and other family However, wherever facilities for neonatal care are sparse,
members, sometimes elders from society including the requirement will be more and criteria for DNR order
religious leaders or family physician. If family desires should be customized. While customizing and
that the baby should be resuscitated and subsequently documenting these criteria, one should be cautious that
reassessed for the status with respect to survival and lack of resources or inability to pay is not a criterion for

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MISHRA, et al END-OF-LIFE CARE CONSENSUS STATEMENT

DNR decisions in neonatal units, just as they are not in resuscitation carried out. However, finally only parents
other intensive care units. should be requested to sign on the papers.

Whereas tertiary neonatal intensive care units can use Health care team leader (usually unit in charge or
a gestational age criteria of 24 weeks, others like special treating doctor) should be aware of all details about
care neonatal units being setup in district hospitals should patient illness. The records related to patient’s illness,
use a gestational age cut-off of 28 weeks. Lesions including the progress notes, must be reviewed. It may be
incompatible with life or compatible with poor quality life helpful to keep complete records of the patient, so that the
are the criteria for all neonatal units to follow. It is progress (or lack of it) can be discussed based on clinical
strongly recommended that each unit should document its notes and investigation rather than being seen as the
own criteria for DNR decisions. personal opinion of the treating physician.
It is a good social practice to formally introduce the
Criteria for Brain Death in Children and Neonates
members of health care team. This helps all concerned in
The diagnosis of brain death is often difficult but understanding each other’s perspective and help in
essential for counseling, more so while initiating breaking ice initially. Discussion should be initiated with
discussion on withdrawal of support. The diagnosis of the information on patient’s illness (past and present),
brain death is based on clinical examination and apnea treatment being offered, future plan and benefits or futility
test conducted twice at an interval of 24 hours for of treatment and prognosis. Presence of a living will
neonates and 12 hours for children beyond 1 month to 18 (though not really prevalent in Indian scenario) should be
years of age. Wherever possible, PaCO2 of 20 mm/Hg enquired about. The family members may be asked “what
above the baseline should be documented. There is no the patient would have done in such a scenario if he/she
role of ancillary tests like electroencephalography would have been competent. That may provide a clue to
(EEG) or radionuclide scan for assessing cerebral blood the attitude of the patient (and may be the person replying)
flow for the diagnosis of brain death–either in neonates towards life or death. This may help the ‘next of kin’ in
or children [21-23]. decision-making.

Counseling Responsibility
It is difficult and stressful to undertake a conversation
Preparation
about death even for experienced clinicians [25,27].
Preparation for counseling involves unanimity in the Therefore, usually the senior most doctor (i.e.,
health care team on appropriateness of DNR decision in consultant in charge of the case) should take the
the given circumstances [24]. Decision to invoke DNR responsibility for initiating and completing this
order should first be discussed in the treating team discussion [28,29]. However, there may be situations
including nurses [24]. Once agreed upon within health where another member of the health care team has
care team, further steps to initiate a discussion with the developed an excellent rapport with the patient. This
parents/ patient or ‘next of kin’ should be undertaken. may be junior doctor in the team or even a nurse. In such
cases, responsibility may be given to that member and (s)
Team needs to decide on competence of the patient to he/she should be supported by other members.
take a decision, in which case discussion should involve
Family and Social Issues Specific for Indian Situation
patient himself, unless he/she expresses his/her
unwillingness to discuss matter related to death [24, 25]. It is imperative for the counseling team to try and
Where patient is not found competent, members of the understand the social dynamics and identify the decision
family need to be taken into confidence and a next of kin maker. In case of an old patient, an assessment of conflict
should be identified. In Indian context, often the decision of interest among family members should be explored. It
makers are not parents. They may be grandparents, local is a common scenario to find that one person agrees with
elders from community or other relatives. These persons the decision of DNR and other(s) do not. In such
must be included in the discussion process. In Indian situation, it is avoidable to press for the agreement, and it
social scenario, family may desire to include even a is prudent to call for another session. In Indian scenario
family physician or a doctor not working in health care and that of other developing countries, where hierarchy
facility where patient is currently being treated [26]. This of community still exists, it may not be possible to give
should be permitted as it is more likely to be helpful rather consent out of free will despite constitutional freedom to
than a hindrance in taking appropriate decision. Pending do so [26]. Financial issues may be involved, where the
such discussion, a DNR order should not be invoked and person responsible for the payment wants such a

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MISHRA, et al END-OF-LIFE CARE CONSENSUS STATEMENT

decision whereas others resist [30]. One such situation is (e.g., emergency treatment, clinical research) are clearly
where a newborn is delivered and is being taken care of defined in some other countries and are logically
at maternal grandparents’ cost. In these situations, it is acceptable for decision-making with respect to DNR
not unusual to find a family member in agreement with decisions as well.
the prognosis and futility of intensive treatment but out
Process of Consent and Documentation
of social pressures and culture of ‘doing best possible till
the last’ do not want to discontinue treatment [27]. Such The process of taking consent involves preparation for
situations should be handled with gradual re- discussion. All options in relation to possible alternative
enforcement of clinician’s viewpoint and discussion on treatment strategies should have been discussed within
financial involvement in such situation may be of help, the medical team and agreed upon [24,25,28]. It is useful
especially where the cost of hospitalization is to be borne to have privacy and uninterrupted time for discussion.
out-of-pocket of an individual. Sensitivity and empathy are of paramount importance to
Another area of potential conflict can be where achieve desired goal. Initiation of discussion should be
parents (or relatives where parents are not available) ask by elaborating patient’s current condition, which should
for abandoning treatment. Female gender of the child may be followed by a discussion on caregiver preference.
confound this situation. In many parts of our country, first Information provided should be free of jargon, in simple
baby is delivered at maternal grandparents’ place and at terms, and in language that relatives can understand.
their cost. Here the father and relatives from his side may Uncertainties should be explained and also the fact that
continue to press for continued treatment whereas in the event of a cardio-respiratory arrest, there will not
maternal side that is bearing the cost of treatment may be be enough time for discussion. Any distressing signal,
more amenable to suggestions on DNR. Where doctors do verbal or in body language should be addressed.
not agree to DNR decisions, it should never be accepted Realistic hope should be provided that is honest but not
based on suggestions of parents or relatives. In view of blunt. Realistic goals of care that is to be continued
hierarchy of decision-making, which give first right to should be explained. Questions should be encouraged to
parents, no decision should be taken against the wishes of clarify the situation. This also helps in assessing the
the father/mother of the baby. mindset of the relatives.

Hierarchy for decision making [31-35] Finally, after the discussion is over, a summary of the
discussion should be documented (Box 5). If DNR is
There is no description of hierarchy for decision making; agreed upon, the order should be placed in the case records
in Indian situation, only guidelines available on and the healthcare team should be informed of the same.
hierarchy are for inheritance of property. Though not
meant for clinical decision-making, they do provide Review of DNR Orders
some guidance for similar situation [34] (Box 4). Every DNR order, even where it seems final, should be
However, the hierarchy for consent in various situations reviewed at predefined interval and continuation of DNR
orders should be documented in the case records at least
Box 4 HIERARCHY FOR DECISION-MAKING* once in week [25]. However, patients’ relatives may
request review of the DNR orders. In such case, fresh
1. Patient him(her)self so long he/she is competent. documentation of discussion and decision taken should be
2. Advanced health directive (will seldom be documented. Another reason for revoking the DNR orders
available in actual practice in India). could be an unexpected improvement in patients’
3. Enduring Guardian (In India, there is no law that condition. Where a DNR order is revoked, the reasons for
recognizes this kind of arrangement. Therefore, the same should be documented and informed to the
this becomes invalid in Indian scenario) relatives, preferably the same people who were present at
4. Guardian initial discussion. It is of importance to note that if a patient
5. Spouse is being transferred to another facility for care of the
6. Child patient, DNR orders remains valid. However, it would be a
7. Parent
good practice to re-communicate the same to the relatives.
8. Sibling (who maintain close contact) EUTHANASIA
9. Unpaid provider of care
A detailed report was submitted to law ministry in 2012
10. Anyone who maintains close contact regarding feasibility of making legislation on euthanasia,
*Same hierarchy could be valid for consent in situation of DNR taking into the account of earlier 196th report of Law

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MISHRA, et al END-OF-LIFE CARE CONSENSUS STATEMENT

commission of India [2]. Supreme Court of India laid down terminally ill patients and nutrition policy of these
the law on the subject of passive euthanasia in relation to patients.
incompetent patients who are in persistent vegetative state
Acknowledgement: Shri Rao Narender Singh (Hon’ble Health &
or in irreversible coma or of unsound mind. For safeguard Medical Education Minister, Haryana), Dr Ajay Khera (Deputy
purpose and to avoid misuse of law, permission from High Commissioner, Ministry of Health & Family Welfare, Govt. of
court will be required before executing passive euthanasia. India) Dr SP Yadav, Dr DV Saharan and SDHE (Smt. Santra
This law will continue till parliament makes a law on this Devi Health & Educational) Trust.
subject that is now long pending. The commission Contributors: SM, KM & ST drafted, critically revised and
supported passive euthanasia that is withdrawal of life finally approved the document. RB, BY, AS & VK searched the
support measures to dying patients which is different from literature, analyzed it, conceptualized, designed and organized
euthanasia and assisted suicide. The bill entitled “The the National Consultative Meet.
Funding: None. Competing interest: None stated.
Medical Treatment of Terminally ill Patients (Protection of
Note: The guidelines may not be long lasting and will change
Patients and Medical Practitioners) Bill 2006” outlines with time. Significant legal issues may arise in the future and
safeguards to be maintained by attending doctors while hence the guidelines may need revision. The guidelines are not
taking such a decision. mandatory or binding and the treating team may utilize the
prevalent laws to make a decision.
Permission shall be sought from the jurisdictional
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