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Indian Pediatr 2017;54: 851-859 |
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End-of-Life Care: Consensus Statement by
Indian Academy of Pediatrics
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* 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.
Email:
[email protected]
Received: July 10, 2016;
Initial Review: April 27, 2017;
Accepted: August 04, 2017.
Published online: August 24, 2017.
PII:S097475591600089
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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.
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Resuscitation is a common procedure performed in
hospitals for all patients suffering from cardiac or respiratory arrest.
Outcome of resuscitation is better in Pediatric age group than in
adults. However, even in children, there are situations where hope for
an intact survival is poor. Often, short term recovery and subsequent
intensive care inflicts physical discomfort for patients and family
alike. Family members also suffer mental and financial agony. This has
been appreciated by healthcare providers across the world, and efforts
have been made to provide meaningful care and graceful end to life,
without painful life pending death for patients and feeling of guilt
among the parents and family members.
Definitions
Euthanasia: This word is derived from
Greek Eu and thanatos meaning good death. In medical
parlance, it refers to acceleration of death by active intervention to
alleviate suffering of a person who is in irretrievable situation. It
has been amply clarified that euthanasia is essentially voluntary and
any intervention against the will is equivalent to murder [1].
Euthanasia is ‘active’ when a deliberate intervention is undertaken with
the express intention of ending life to relieve intractable suffering,
and ‘passive’ when it involves withholding life support system for
continuance of life [2].
End-of-Life care: This refers to care of a
person who has received a life-limiting diagnosis. It encompasses all
aspects of care till the final outcome and care of mortal remains [3].
Resuscitation: It is the process of
restoring the cardiac or pulmonary function back to normal, fully or
partially, after a cardiac or respiratory arrest.
Do-Not-Resuscitate (DNR) order: This is a
treatment decision taken prior to event of cardiac or respiratory
arrest, with the consent of patient, or where that is not possible,
proxy consent of next of kin, where care providers will not provide
requisite cardio-respiratory resuscitation. This does not preclude, or
stop to any degree, normal care and treatment being given to the patient
[4].
The Legal Framework
The Constitution of India, Article 21, provides
‘Protection of Life’ and ‘Personal Liberty’. It states that "no person
shall be deprived of his life or personal liberty except according to
procedure established by law." However, there have been several
expansions of article 21 and in its expanded form it assures the right
to live with human dignity. Death is universal but dying in a peaceful
and dignified manner would be welcome by every individual.
Some persons interpreted the right to life as
including right "not to live" or right to death (P. Rathinam v. Union
of India, JT 1994(3) SC 392). However in this judgment, while
accepting right-to-die, euthanasia was not considered viable and was not
permitted. Several other judgments, (Gian Kaur v. State of Punjab, JT
1996 (3) SC 339; C.A. Thomas Master vs Union of India, Kerala HC, 2000
Cri LJ 3729) have held that right-to-life as enshrined in
constitution article 21 does not confer right-to-death. In a recent
judgment on a Public Interest Litigation (PIL), Rajasthan High court two
judge bench upheld the PIL and held the Jain religious practice of "Santhara
or Sallekhana — a practice of deliberate starvation to death" as
unconstitutional, and to treat it as suicide punishable under section
309 [5].
Why do we Need End-of-Life (EOL) Decisions?
There are many situations when patients with
irreversible or end-stage diseases (where there is very little chance of
recovery) remain, on assisted ventilation for days, weeks or months.
This is associated with several conflicts:
1. This results in prolongation of ‘vegetative
life’ that may be a source of misery for everyone, especially for
the patient and the family.
2. There is a lowering of ‘dignity of death’ due
to futile invasive procedures and unnecessary treatment.
3. There may not be any chance of improvement or
survival leading to wastage of resources.
4. It may be a significant burden for the family
or society–physically, financially and psychologically.
5. There may be situation where limited resources
may be denied to a more ‘deserving salvagable individual’ because
they are ‘in use’ for a vegetative individual.
6. In some specific situations, there may be need
for withdrawing assisted respiratory support; e.g., in cases of
brain-stem death that is certified by a board of medical experts.
In spite of the above situations – which happen quite
frequently, especially in intensive care unit (ICU) set-up, cancer
patients and in some irreversible chronic conditions – there are no
legal guidelines in our country regarding withdrawal of care or EOL
decisions. There is also no guideline regarding not to initiate
resuscitation in conditions where life may not be meaningful after
resuscitation.
Process of Forming Guidelines
A National consultative meeting was organized at RML
Hospital, New Delhi on 30 th
May 2014, where the participants included experts from various relevant
fields like academicians from medical fraternity, practicing doctors,
intensivists (adult, pediatric and neonatal), lawyers, persons with both
legal and medical qualifications, administrators and members from
regulatory bodies. Stakeholders like Government of India, Medical
Council of India, social organizations, and legal and medical fraternity
were represented. Representation from various medical disciplines
included Pediatrics, Anesthesia, Oncology, Cardiology and Intensive
care.
The consultative meet had four sessions: First
session was on legal issues in relation to end-of-life care, protection
of patient rights and rights of medical professional, laws related to
right to life and deaths. Presentation included cases dealt by Hon’ble
Supreme court including judgments. Second session focused on the issues
related to care towards the end-of –life, especially in terminally ill
patients. Third session reviewed currently available guidelines and
literature on the subject. In last session, issues on various aspects of
the topic were discussed. Points agreed upon were reiterated and those
lacking consensus were further discussed and a broad consensus was
achieved. Summary guidelines were prepared and presented. A writing
committee was designated. Draft of the write-up was prepared by two
members of the writing committee, and was circulated among all members.
Suggestions were incorporated in the final write-up.
End-of-Life Care
End-of-Life Care is defined by National Council for
Palliative Care UK [6] as "Helps all those with advanced, progressive,
incurable illness to live as well as possible, until they die. It
enables the supportive and palliative care needs of both patient and
family to be identified and met throughout the last phase of life and
into bereavement. It includes management of pain and other symptoms and
provision of psychological, social, spiritual and practical support."
This essentially means not taking up intensive care
in the event of a cardiac or respiratory arrest but does not deny
continued care, nutrition by oral or oro-gastric or naso-gastric route,
pain relief, physiotherapy and other comfort care. It does not mean
abandoning a patient after an EOL Care decision is taken.
Ethical Principles
While taking decisions for EOL in any critically sick
patient, four ethical principles must be followed [7]:
Autonomy means an individual’s rights of freedom
and liberty to make changes that affect his or her life. In the right to
self-determination, the informed patient has a right to choose the
manner of his treatment. In pediatric and neonatal patients either the
parents or a legal guardian can take such decisions.
Beneficence is acting in what is (or
judged to be) in patient’s best interest. The physician is expected to
act in the best interests; his responsibility extends beyond medical
treatment to ensure compassionate care during the dying process. The
physician’s expanded goals include facilitating (neither hastening nor
delaying) the dying process, avoiding or reducing the sufferings of the
patient and his family, providing emotional support and protecting from
financial loss. "The best interest calculus generally involves an open
ended consideration of factors relating to the treatment decision,
including the patient’s current condition, degree of pain, loss of
dignity, prognosis and the risks, side effects and benefits of each
treatment’’ [8].
Non-malfeasance means to do no harm, to impose no
unnecessary or unacceptable burden upon the patient. This is subject to
varied interpretation, as the same act may be considered as harmful or
beneficial depending on the circumstances.
Distributive justice means treating patients
truthfully and fairly. Physicians need to take a responsible decision
and to make good use of the infrastructure, finances and human
resources. The physician may thus provide treatment and resources to one
with a potentially curable condition over another for whom treatment may
be futile.
In cases of resuscitation of newborn, the autonomy of
newborn and to take decision in life threatening emergency situations
are both exceptions of general rules of ethics.
Dilemma in EOL Decisions
While dealing with a situation that may warrant EOL
care decision or discussion, considering above mentioned principles,
dilemma arise in the mind of treating doctor. These may be summarized as
below:
Legal dilemma
A reasonable amount of certainty is required to take
decisions regarding EOL because the probability of dying is not always
clear. In many countries, there are set guidelines about when to
initiate EOL discussion; however, we do not have definite guidelines
agreed upon by professional bodies. There can be questions in relation
to which patients can be ascribed as ‘approaching the end of life’. GMC
guidelines [9] suggest that if a person is likely to die in a period of
one year, he/she may be considered as ‘approaching the end of life’.
Ethical dilemma
Ethical dilemma arises when the opinions are at
variance; e.g. one child or parent of the diseased may have
difference of opinion from the other. It may so happen that the diseased
person is a minor, but is old enough to understand and his/her opinion
is different from parent(s). In another situation, opinion of the
parent(s) may be detrimental to the baby.
Most of this dilemma can be solved with clear thought
process, involvement of senior most physicians in the team, and good
communication with the next of kin. However, in Indian social setup,
where everyone wants to do ‘the best’ till the end for social reasons,
it may still be difficult to achieve consensus among family members. In
such situation, DNR or EOL should not be activated till consensus is
achieved.
Do Not Resuscitate
Do Not Resuscitate (DNR) is a clear concept in most
developed countries [10]. It does not involve withdrawing life support
system where a patient is already on ventilator or inotropes. It also
does not involve discontinuing routine care like oxygen, nutrition,
fluids (oral intravenous). DNR is like any other treatment decision, and
must be adequately documented and communicated to all team members for
effective implementation. In India, so far we do not have a clear legal
guideline and accepted method of documentation of DNR [11].
There are two more terms used in this relation;
‘withhold LST (Life-sustaining Treatment Measures)’, and ‘withdraw LST’.
Witholding LST: LST, especially ventilation,
central line placement and renal replacement therapy, require consent.
Except in the event where none from family is available, and clinical
condition of the patient is life-threatening, these should not be
initiated without consent. While obtaining informed consent, it is
required to inform the patients or attendants about the possible
outcome, need or futility of the intervention, what can be expected as a
result of such intervention and the cost likely to be incurred (where
applicable – likely to be paid by the family) in the process. The same
should be documented. Only after such informed consent, if the patient
or relatives insist on continued intervention, these should be
undertaken. Care should be exercised that refusal of such consent should
not result in dilution of basic care to the patient and judgmental
statements are not made by the staff working in the unit, which can
result in feeling of guilt.
Withdrawing LST: Withdrawing life sustaining
treatment is more difficult. It should always be done with clear and
repeated discussion till parent(s) or next of kin understand the
consequences and concur with the actions being taken and have given
written consent for the same. Discussion should involve senior member of
the medical team, preferably unit in - charge or the treating doctor.
The withdrawal of support should never be done to facilitate use of
equipment for another patient who may be potentially salvagable. This
should never be used as an argument for counseling for withdrawal of
support. The principles and components of ‘good death’ have been
elaborated in Box 1. These have been modified from the
guidelines of Indian Society of Critical Care Medicine and Indian
Association of Palliative Care [14, 15].
Box 1 Principles of Good Death
• 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
• To be able to get pain relief, control over
other symptoms and care including hospice care where available
• To be able to choose the place of death
• To have access to desired information and
expertise
• To have access to support required
including spiritual and emotional support
• To be able to decide about the presence of
near and dear ones and who share the end
• To be able to issue advanced directive
ensuring that one’s wishes are respected*
• To avoid pointless prolongation of life
* Such provisions do not exist in India. At present, there is
an appeal admitted to the Supreme Court on the issue of allowing
advance directive.
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Modified from Reference number 14 and 15
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Clinical Aspects of DNR
Who are the candidates for DNR?
It can be said that situations where resuscitation is
not likely to lead to prolonged and useful survival, are the candidates
for DNR (Box 2).
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Box 2: Who are the Candidates for DNR
• Where life sustaining treatment is likely
to be ineffective or futile.
• Where patient has prolonged unconsciousness
which is unlikely to recover.
• Where patient has a terminal condition for
which there is no definitive therapy.
• Where patient has a chronic debilitating
disorder where burden of resuscitation far outweighs the
benefits.
• Where medical treatment appears futile.
Futile medical treatment is generally defined as "where
treatment is useless, ineffective or does not offer a reasonable
chance of survival" [12].
• Such other factor that may be unique to the
patient e.g., where patient has made an informed living will to
refuse CPR [13].
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Who are not the candidates for DNR?
DNR should not be activated where:
• patient is unable to pay for advanced care
• the outcome is doubtful (may or may not improve
situation)
• there is conflicting opinion among the family
members
• responsible next of kin is not available for
discussion
• written consent is not available
What is done and what is not done if DNR is activated
[16] is listed in Box 3.
Box 3
What is Done and What is Not Done if DNR is Activated
[14] |
Even with DNR orders, a health worker will provide basic support
in the form of:
• Clear airway
• Provide Oxygen
• Position for comfort
• Splint
• Control bleeding
• Provide pain medication
• Provide emotional support
• Contact hospice or hospital
(as hospice facility is hardly available in India)
• With DNR orders, a health
care worker is not required to
• Perform chest compressions
• Insert advanced airway
• Administer Cardiac
resuscitation drugs
• Provide ventilator
assistance including noninvasive ventilation
• Defibrillate
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DNR Issues in Neonates
Neonates are in a special situation with respect to
resuscitation and DNR orders. A clinician may face this situation right
at the time of birth or subsequently during treatment. At the time of
birth, condition of the baby may be anticipated or may not be
anticipated and arise suddenly. Like in all other situations, social,
emotional and cultural environment would affect DNR decisions.
Decisions at the time of birth
At the time of birth, two broad situations may demand
a decision. First is a baby with congenital anomaly or anomalies that
are incompatible or may be compatible with life, but the expected
quality of life may be poor or a big drain on resources of
family/society. Second situation is where the birth weight and
gestational age is such that survival, especially intact survival, may
be almost impossible. Where congenital anomalies are known before birth
and the time permits, DNR decisions should be discussed with parent(s)
and other family members, sometimes elders from society including
religious leaders or family physician. If family desires that the baby
should be resuscitated and subsequently reassessed for the status with
respect to survival and treatment options, this must be honored. Where
family agrees with DNR decision, it may be implemented if the baby is
found to have expected situation/problem. The decision of DNR may be
reversed if doctor finds baby’s condition to be different from what was
antenatally expected. This should also be explained to parent(s) during
discussion on DNR.
Where there had been no opportunity for discussion
with parents, baby should be resuscitated fully except in gross
anomalies that are incompatible with life e.g., anencephaly [17]
or prematurity that is not compatible with life. Decision on prematurity
depends on period of viability. With improving survival of babies with
lower gestational age [18,19] definition of period of viability has
become more difficult. This decision should be based on local survival
data and possibility of intact survival in a given setup. However, as a
general norm, it can be said that 24 weeks gestation babies are
regularly surviving [18] in many centers in our country where tertiary
care facilities are available and therefore any baby above this
gestation age must be resuscitated in such centers. In centers where
tertiary care facilities are not available, 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 a tertiary
care neonatal unit. It would be prudent to attempt ‘in utero’ transfer
in such situations.
Decision in neonatal units
DNR issues faced in neonatal units are qualitatively
same as faced in other intensive care units. However, frequency of
congenital anomalies in neonatal units is high and is a prominent reason
for a DNR order. In a study from Oman [20], lesions that will not allow
meaningful survival (18 of 39) and lesions incompatible with life (15 of
39) were the reasons for a DNR order. Gestational age related reason
(below 24 weeks gestation) was present in only 3 of 39 babies where DNR
orders were given. This study also highlighted that parents were more
comfortable accepting non-initiation of ventilator support (14 of 20
cases where it was proposed) than withdrawal of ventilator support (2 of
19 cases). In this study, 36% of deaths were preceded by a DNR order.
This is far less than some of the western studies [21] where the
frequency was as high as 68%.
In India, there are hardly any studies on this
subject. However, wherever facilities for neonatal care are sparse, the
requirement will be more and criteria for DNR order should be
customized. While customizing and documenting these criteria, one should
be cautious that lack of resources or inability to pay is not a
criterion for DNR decisions in neonatal units, just as they are not in
other intensive care units.
Whereas tertiary neonatal intensive care units can
use a gestational age criteria of 24 weeks, others like special care
neonatal units being setup in district hospitals should use a
gestational age cut-off of 28 weeks. Lesions incompatible with life or
compatible with poor quality life are the criteria for all neonatal
units to follow. It is strongly recommended that each unit should
document its own criteria for DNR decisions.
Criteria for Brain Death in Children and Neonates
The diagnosis of brain death is often difficult but
essential for counseling, more so while initiating discussion on
withdrawal of support. The diagnosis of brain death is based on clinical
examination and apnea test conducted twice at an interval of 24 hours
for neonates and 12 hours for children beyond 1 month to 18 years of
age. Wherever possible, PaCO 2
of 20 mm/Hg above the baseline should be documented. There is no role of
ancillary tests like electroencephalography (EEG) or radionuclide scan
for assessing cerebral blood flow for the diagnosis of brain
death–either in neonates or children [21-23].
Counseling
Preparation
Preparation for counseling involves unanimity in the
health care team on appropriateness of DNR decision in the given
circumstances [24]. Decision to invoke DNR order should first be
discussed in the treating team including nurses [24]. Once agreed upon
within health care team, further steps to initiate a discussion with the
parents/ patient or ‘next of kin’ should be undertaken.
Team needs to decide on competence of the patient to
take a decision, in which case discussion should involve patient
himself, unless he/she expresses his/her unwillingness to discuss matter
related to death [24, 25]. Where patient is not found competent, members
of the family need to be taken into confidence and a next of kin should
be identified. In Indian context, often the decision makers are not
parents. They may be grandparents, local elders from community or other
relatives. These persons must be included in the discussion process. In
Indian social scenario, family may desire to include even a family
physician or a doctor not working in health care facility where patient
is currently being treated [26]. This should be permitted as it is more
likely to be helpful rather than a hindrance in taking appropriate
decision. Pending such discussion, a DNR order should not be invoked and
resuscitation carried out. However, finally only parents should be
requested to sign on the papers.
Health care team leader (usually unit in charge or
treating doctor) should be aware of all details about patient illness.
The records related to patient’s illness, including the progress notes,
must be reviewed. It may be helpful to keep complete records of the
patient, so that the progress (or lack of it) can be discussed based on
clinical notes and investigation rather than being seen as the personal
opinion of the treating physician.
It is a good social practice to formally introduce
the members of health care team. This helps all concerned in
understanding each other’s perspective and help in breaking ice
initially. Discussion should be initiated with the information on
patient’s illness (past and present), treatment being offered, future
plan and benefits or futility of treatment and prognosis. Presence of a
living will (though not really prevalent in Indian scenario) should be
enquired about. The family members may be asked "what the patient would
have done in such a scenario if he/she would have been competent. That
may provide a clue to the attitude of the patient (and may be the person
replying) towards life or death. This may help the ‘next of kin’ in
decision-making.
Responsibility
It is difficult and stressful to undertake a
conversation about death even for experienced clinicians [25,27].
Therefore, usually the senior most doctor (i.e., consultant in
charge of the case) should take the responsibility for initiating and
completing this discussion [28,29]. However, there may be situations
where another member of the health care team has developed an excellent
rapport with the patient. This may be junior doctor in the team or even
a nurse. In such cases, responsibility may be given to that member and
(s) he/she should be supported by other members.
Family and Social Issues Specific for Indian
Situation
It is imperative for the counseling team to try and
understand the social dynamics and identify the decision maker. In case
of an old patient, an assessment of conflict of interest among family
members should be explored. It is a common scenario to find that one
person agrees with the decision of DNR and other(s) do not. In such
situation, it is avoidable to press for the agreement, and it is prudent
to call for another session. In Indian scenario and that of other
developing countries, where hierarchy of community still exists, it may
not be possible to give consent out of free will despite constitutional
freedom to do so [26]. Financial issues may be involved, where the
person responsible for the payment wants such a decision whereas others
resist [30]. One such situation is where a newborn is delivered and is
being taken care of at maternal grandparents’ cost. In these situations,
it is not unusual to find a family member in agreement with the
prognosis and futility of intensive treatment but out of social
pressures and culture of ‘doing best possible till the last’ do not want
to discontinue treatment [27]. Such situations should be handled with
gradual re-enforcement of clinician’s viewpoint and discussion on
financial involvement in such situation may be of help, especially where
the cost of hospitalization is to be borne out-of-pocket of an
individual.
Another area of potential conflict can be where
parents (or relatives where parents are not available) ask for
abandoning treatment. Female gender of the child may confound this
situation. In many parts of our country, first baby is delivered at
maternal grandparents’ place and at their cost. Here the father and
relatives from his side may continue to press for continued treatment
whereas maternal side that is bearing the cost of treatment may be more
amenable to suggestions on DNR. Where doctors do not agree to DNR
decisions, it should never be accepted based on suggestions of parents
or relatives. In view of hierarchy of decision-making, which give first
right to parents, no decision should be taken against the wishes of the
father/mother of the baby.
Hierarchy for decision making [31-35]
There is no description of hierarchy for decision
making; in Indian situation, only guidelines available on hierarchy are
for inheritance of property. Though not meant for clinical
decision-making, they do provide some guidance for similar situation
[34] (Box 4). However, the hierarchy for consent in
various situations (e.g., emergency treatment, clinical research)
are clearly defined in some other countries and are logically acceptable
for decision-making with respect to DNR decisions as well.
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Box 4 Hierarchy for Decision-making*
1. Patient him(her)self so
long he/she is competent.
2. Advanced health directive
(will seldom be available in actual practice in India).
3. Enduring Guardian (In
India, there is no law that recognizes this kind of arrangement.
Therefore, this becomes invalid in Indian scenario)
4. Guardian
5. Spouse
6. Child
7. Parent
8. Sibling (who maintain
close contact)
9. Unpaid provider of care
10. Anyone who maintains close contact
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Process of Consent and Documentation
The process of taking consent involves preparation
for discussion. All options in relation to possible alternative
treatment strategies should have been discussed within the medical team
and agreed upon [24,25,28]. It is useful to have privacy and
uninterrupted time for discussion. Sensitivity and empathy are of
paramount importance to achieve desired goal. Initiation of discussion
should be by elaborating patient’s current condition, which should be
followed by a discussion on caregiver preference. Information provided
should be free of jargon, in simple terms, and in language that
relatives can understand. Uncertainties should be explained and also the
fact that in the event of a cardio-respiratory arrest, there will not be
enough time for discussion. Any distressing signal, verbal or in body
language should be addressed. Realistic hope should be provided that is
honest but not blunt. Realistic goals of care that is to be continued
should be explained. Questions should be encouraged to clarify the
situation. This also helps in assessing the mindset of the relatives.
Finally, after the discussion is over, a summary of
the discussion should be documented (Box 5). If DNR is
agreed upon, the order should be placed in the case records and the
healthcare team should be informed of the same.
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Box 5 A Checklist for the Summary of
Discussion on DNR
• Name of the patient:
• Regd. No:
• Diagnosis:
• Prognosis:
• Names of persons involved
in discussion:
• Likely outcome of CPR:
Unsuccessful
• Preference of the patient:
Against CPR/ Undecided / Not Known
• Views of the "person
responsible": Against CPR/ Undecided / Not Known/ Wants CPR
• Reasons for decision of DNR
/ Not advising DNR:
• Goals of treatment:
Palliation/ Symptom relief/ Recovery from present episode of
illness
• Consultant Responsible for
DNR order: Dr………………………………..
• Review Date: dd/mm/yyyy
• Remarks (if any)
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Review of DNR Orders
Every DNR order, even where it seems final, should be
reviewed at predefined interval and continuation of DNR orders should be
documented in the case records at least once in week [25]. However,
patients’ relatives may request review of the DNR orders. In such case,
fresh documentation of discussion and decision taken should be
documented. Another reason for revoking the DNR orders could be an
unexpected improvement in patients’ condition. Where a DNR order is
revoked, the reasons for the same should be documented and informed to
the relatives, preferably the same people who were present at initial
discussion. It is of importance to note that if a patient is being
transferred to another facility for care of the patient, DNR orders
remains valid. However, it would be a good practice to re-communicate
the same to the relatives.
Euthanasia
A detailed report was submitted to law ministry in
2012 regarding feasibility of making legislation on euthanasia, taking
into the account of earlier 196 th
report of Law commission of India [2]. Supreme Court of India laid down
the law on the subject of passive euthanasia in relation to incompetent
patients who are in persistent vegetative state or in irreversible coma
or of unsound mind. For safeguard purpose and to avoid misuse of law,
permission from High court will be required before executing passive
euthanasia. This law will continue till parliament makes a law on this
subject that is now long pending. The commission supported passive
euthanasia that is withdrawal of life support measures to dying patients
which is different from euthanasia and assisted suicide. The bill
entitled "The Medical Treatment of Terminally ill Patients (Protection
of Patients and Medical Practitioners) Bill 2006" outlines safeguards to
be maintained by attending doctors while taking such a decision.
Permission shall be sought from the jurisdictional
District Court/High Court (wherever the latter has original
jurisdiction) where treatment is being given to the patient, where the
patient is in a persistently vegetative state and chances of revival
seem remote. However, according to report of Law commission of India,
2012, Supreme Court has laid the guidelines to seek high court’s opinion
as mandatory whenever any decision of withdrawal of life support is to
be undertaken. The high court then should seek the opinion of three
medical experts’ committee and also put on notice the close relations
and in their absence, the next friend of the patient and the state.
There is also a need to formulate policies on comfort
care before death, palliative care and pain relief in terminally ill
patients and nutrition policy of these patients.
Acknowledgement: Shri Rao Narender Singh (Hon’ble
Health & Medical Education Minister, Haryana), Dr Ajay Khera (Deputy
Commissioner, Ministry of Health & Family Welfare, Govt. of India) Dr SP
Yadav, Dr DV Saharan and SDHE (Smt. Santra Devi Health & Educational)
Trust.
Contributors: SM, KM & ST drafted, critically
revised and finally approved the document. RB, BY, AS & VK searched the
literature, analyzed it, conceptualized, designed and organized the
National Consultative Meet.
Funding: None. Competing interest: None
stated.
Note: The guidelines may not be long lasting and
will change with time. Significant legal issues may arise in the future
and hence the guidelines may need revision. The guidelines are not
mandatory or binding and the treating team may utilize the prevalent
laws to make a decision.
Annexure
List of Participants of National
Consultative Meet
Shri Rao Narender Singh, Hon’ble Health & Medical
Education Minister-Haryana; Ajay Khera (Deputy Commissioner), MOHFW-GOI,
SP Yadav (Member, MCI); RK Mani, Adv MC Gupta, Adv PN Tiwari, Adv.
Sushil Gupta, KK Aggarwal, Rishi Bhatia, AS Jaggi, Sudhir Mishra, Kanya
Mukhopadhyay, Satish Tiwari (Founder President IMLEA); Rajendra Bangal
(Professor, Forensic Medicine & Medicolegal Expert), Balraj S Yadav
(Joint Secretary IAP-IYCF), Anjan Bhattacharya, Awadh Pandit, Mugdha
Tapdiya, SP Kataria (Professor Radiotherapy, Safdurjang), DV Saharan,
Pushpa Bishnoi (Civil Surgeon), Anant Mohan (Professor, Medicine AIIMS),
Vishesh Kumar (WHO), Dr Sanjay Wazir (Consultant, Neonatologist), Lata
Bhat, VK Goyal, TBS Buxi (Consultant Radiologist, SGRH), Mukul Tiwari,
HK Kar (Director RML Hospital), Ashish Jain, Pankaj Garg.
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