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Terminal illness, maradh
al mawt, is defined as illness from which recovery is not expected. Under
the principle of certainty, qa’idat al
yaqiin, definition of death must be such that there is no further doubt, yaqiin la yaqbalu al taraddud. There is
unanimity, ijma’u, that cessation of
respiration or cessations of blood circulation or brain stem death are
irreversible indicators of death. Brain stem death has exactly the same effect
as decapitation. Conventional treatment, artificial life support, artificial
nutrition, and artificial hydration should not be started or if they had been
started should be withdrawn because they have no nett benefit and are a waste
of resources.
There is no unanimity about defining death as
irreversible higher brain death. No patient with this condition has ever
recovered to normal life. Such patients are unconscious but have an intact
brain stem which maintains vital life functions like respiration with or
without artificial life support. They are described as being in a persistent
vegetative state (PVS). Since action cannot be taken based on a doubt,
conventional treatment, artificial life support, artificial nutrition and
hydration should be continued until death can be ascertained. If there is a
problem with resources the matter should be referred to a judge for a decision.
For severely ill terminal
patients with an intact brain stem and some function in the higher brain,
conventional treatment, artificial life support, artificial nutrition, and
artificial hydration should be initiated and maintained if there is a nett
benefit even of an uncertain or
temporary nature. They are not initiated to delay death for any other personal
or public reason. They are not withheld on the basis of poverty, advanced age, race, caste, or religion. They are not withheld
from an infant born with severe congenital disease on the basis that if he
grows up he will be disabled. They should be withdrawn as soon as brain
death is ascertained except when their continuation will maintain vital bodily
functions to give time for organ harvesting or for a fetus to grow to
viability. Their withdrawal from a patient with a functioning brain stem on the
basis of sparing him further pain and suffering is euthanasia and is clearly haram. If their continuation has a resource
constraint, the matter should be referred to a judge for a decision.
There is no distinction between
withholding and withdrawing artificial life support because their intentions
and consequences are the same. It is psychologically easier if life support is
not started at all according to pre-set criteria of the hospital that should
define what is customary in cases of brain stem death because the customary has
legal effect, al ‘aadat muhakkamat. Continuation
is excused where commencing is not, yughtafar
fi al baqa ma la yughtafar fi al ibtidaa. Continuation is easier that
starting, al baqau ashal min al ibtidaa.
It is better to avoid issues of withdrawing life support than to deal with its
attendant problems, al maniu afdhal min
al raf'iu. In terminal care, the purpose of preserving life, maqsad hifdh al nafs, may contradict the
purpose of preserving wealth, maqsad
hifdh al maal. Life is more important than wealth for ordinary medical care.
Heroic procedures of doubtful benefit are a waste of wealth, israaf.
Cardio-pulmonary resuscitation
involves measures to reverse respiratory failure and / or cardiac failure. It
should be attempted only when it is expected to succeed and the success is not
momentary. The decisions on CPR should not involve considerations of future
benefit. It should be limited to the sole benefit of reviving the
cardio-respiratory system. Premature infants and infants with congenital
anomalies should not be denied CPR on the grounds of poor future prognosis.
Parents cannot refuse CPR that physicians feel can succeed. Physicians cannot
be forced to undertake CPR with no prospect of success. Cases of doubt should
be referred to the courts.
Preferences on initiating,
withholding, and withdrawing artificial life support and cardiopulmonary
resuscitation should preferably be made by the patient in the form of an
advance statement made while still competent. This relieves the physicians and
the family from the pressure of having to make difficult decisions for terminal
patients with intact brain stem function but poor prognosis. Patients can also
authorize a next of kin to be a proxy decision maker. If the rest of cases the
physician does what he thinks is in the best interests of the patient. Where
there are doubts in non-emergency situations the matter can be referred to a
judge.
1.1 DEFINITION OF TERMINAL ILLNESS, maradh al maut
Terminal illness is defined as illness from which
recovery is not expected. Medical and surgical procedures may be carried out to
support life functions and replace organs damaged beyond repair. These include
the artificial respirator, the heart-lung machine, pace makers, kidney
dialysis, parenteral feeding, and drug treatment. Most of these are heroic
measures that do not change the basic condition. The patient inevitably
succumbs as soon as the measures are withdrawn. Legal issues arise on starting
initiating life support and also on termination of life support.
1.2 DEFINITION OF DEATH
1.2.1 DIFFERENT WAYS OF DEFINING DEATH: The manner in
which death is defined affects the ruling, hukm,
about life support. The following are various definitions of death: (a)
traditional: cardio-respiratory arrest (b) Brain stem death (c) Higher brain
death. If death is defined as cardio-respiratory failure or as brain stem death,
life support can be withdrawn immediately because death is certain. Dr Ali al
Bar has described brain stem death very accurately as having the same effect as
decapitation. If the definition of higher brain stem death is accepted, life
support will be removed from persons who still have many life functions (like
respiration, circulation, sensation).
1.2.2 CERTAINTY, yaqiin,
IN ASCERTAINING DEATH: Since the definition of death and the exact time of its
occurrence are still matters of dispute, a major irreversible decision like
withdrawing life support cannot be taken in cases of doubt. Islamic law
strictly forbids action based on uncertainty, shakk.
1.2.3 IRREVERSIBILITY: Decisions whose effects can be
reversed easily are easier to make than decisions that are not easily
reversible. Withdrawal of life support that will be followed by immediate
cessation of all manifestations of life is an irreversible decision. It has to
be taken after careful consideration of all factors involved.
1.2.4 QUALITY OF LIFE: The question of quality of life
should not be raised in the definition of life. The assumption is that there
must be some quality to human life for it to be worth living. As humans we can
know only material aspects of life quality such as pain. There are other
aspects that are beyond ordinary human perception. We learn from the Qur'an
that the death of non-believers is stressful in the spiritual sense. Believers
can have a good death even if there is a lot of pain.
2.0 LEGAL
ANALYSIS OF LIFE SUPPORT
2.1 THE PURPOSE OF LIFE, maqsad hifdh al nafs
The primary purpose of medicine is preservation of
life, hifdh al nafs. This implies
that all possible and available means should be used to support life if life
exists. For severely sick and terminal patients we may have to distinguish
between ordinary and extra-ordinary means. The Law obliges physicians to offer
ordinary means that are generally accepted as the standard of care according to
the principle of custom, qa’idat al
‘aadat. Extra ordinary means involve costs, burdens, higher risks, and
great inconvenience. Extra ordinary means are not obligatory. The Law does not
oblige physicians to try means that are futile.
2.2 THE PURPOSE OF PRESERVING RESOURCES, maqsad hifdh al maal
The purpose of preserving life
may contradict the purpose of preserving wealth. Life comes before wealth in
order of priorities. This however applies to expenditure on ordinary medical
procedures and not heroic ones of doubtful value because that would be waste of
wealth, israaf, that has been
condemned. The patient's choices about food and medical treatment my contradict
the purpose of preserving life. Where life in under immediate threat, the
patient's desires may be overridden.
2.3 THE PRINCIPLE OF CERTAINTY, qa’idat
al yaqiin.
2.3.1 There are many decisions in terminal illness
that cannot be made easily because of uncertainty. In what condition should
artificial life support be instituted? When should artificial life support be
terminated? How can a determination be made that further medical efforts are
futile and focus should be on palliative care? What about life support measures
that are beneficial in support of a specific physiological condition but
because they have side effects result in no nett benefit for the patient? What
about support measures that just prevent further deterioration but do not
reverse the tissue existing tissue damage? Should the worth of the patient’s
life be a factor in deciding to institute or end life support? Should life
support be withheld or withdrawn on the basis of cost? Isn’t withdrawal of life
support a form of euthanasia? How can physicians assess the best interests of
the patient?
2.3.3 The principle of certainty
is invoked in the following situations: prediction of prognosis, definition of death,
legality of living wills, and free consent. Computer programs exist that can
predict the probability of death when patient details are entered. These
programs increase the certainty and therefore the confidence of physician
decision making regarding initiating or withdrawal of life support.
2.3.3 The definition of death
requires that there should be no doubts at all, al yaqeen la yazuulu bi al shakk. Of all available definitions of
death, it is only the traditional definition of death as cardio-respiratory
failure that is accepted by all. There is no doubt about its irreversibility.
There is near unanimity that brain stem death is irreversible death. There is
so far no medical technology that can reverse brain stem death. However use of
higher brain death as definition of death is still controversial and is nowhere
near unanimity. The implication of death definition is that once a person is
declared dead with certainty, the withdrawal of life support is legally
acceptable. We have to stick to the traditional cardio-respiratory arrest
criterion or the brain stem death criteria until a new consensus or new
evidence appears. The provision of the law is that existing assertions should
continue in force until there is compelling evidence to change them, al asal baqau ma kaan ala ma kaana.
2.4 THE PRINCIPLE OF INTENTION
2.4.1 AUTONOMY DECISIONS BY
COMPETENT ADULT PATIENTS: The principle of autonomy is subsumed under the
principle of intention. The following autonomy issues arise: Who decides, the
physician, the family, or the patient? What is done for incompetent patients or
patients who are minors? Can patients refuse or accept withholding or
withdrawing life support in advance? The
person who makes decisions regarding life support should be with the most sincere
intentions. The terminally ill patient, who takes a major risk, should make the
final informed decisions after clarification of the medical, legal, and ethical
issues by physicians and fuqaha. A
patient who cannot speak could write their choices. Established sign language
can also be accepted, al isharat al
ma'ahudat ka al bayan bi al lisaan. However no assumptions should be made
about the choices of a patient who is unconscious and cannot communicate in any
way, la yunsab ila saakit qawl.
2.4.2 THE ROLE OF THE FAMILY: The
family may request that life support be terminated if the patient is in pain or
coma. Self-interest may motivate some members of the family and others with
personal interest to hasten the legal death of the terminally ill patient. According
to Islamic law, any inheritor who plays any role direct or indirect in the
death of an inheritee cannot be an inheritor.
It is therefore impossible for any member of the close family to take part
in decisions about life support.
2.4.3 THE ROLE OF PHYSICIANS: Physicians
and other health care givers may abuse their professional privileges and kill
whom they want. They could be bribed to kill people by either family members or
others.
2.4.4 THE LIVING WILL AND POWER
OF ATTORNEY: The use of a living will has been proposed as a way around this.
The person writes a will while still healthy specifying preferences for medical
procedures in cases of terminal illness. The will may also confer powers of
attorney on any other person to make the necessary decisions. In our opinion a
living will is a non-binding recommendation because it is made for a
hypothetical situation. It is most likely that the person making the will would
decide differently if in an actual situation of terminal illness. The family however
has limited choices. They can never take any decision that involves causing
death either actively or passively because that would automatically disinherit
them.
2.5 LIFE SUPPORT:
WITHHOLDING vs. WITHDRAWAL
According to the principle of
intention, a distinction in law does not exist between withholding life support
and withdrawing it. Both have the same intention and are therefore considered
legally equal. There is however a major psychological difference between the
two. The issue is legally easier if life support is not started at all
according to a pre-set policy and criteria. Once it is started, discontinuation
raises legal or ethical issues. The principle of the law that applies here is
that continuation is excused where commencing is not, yughtafar fi al baqa ma la yughtafar fi al ibtidaa. Continuation is
easier that starting, al baqau ashal min
al ibtidaa. Euthanasia like other controversial issues in better prevented
than waiting to resolve its attendant problems, al maniu afdhal min al raf'iu
2.6 PRINCIPLE OF CUSTOM
The principle of custom is also
used to define what is customary medical care to distinguish it from heroic
efforts that are sometimes employed in terminal illness. It is a crime to fail
to provide care that is customarily accepted as appropriate. There is no
obligation to institute heroic measures that are out of the ordinary.
3.0 LEGAL RULINGS IN TERMINAL CARE
3.1 CLINICAL PRACTICE GUIDELINES
Each hospital should have written
guidelines on initiating, withholding, and withdrawing life support,
conventional treatment, nutrition and hydration. The guidelines should specify
what to do in cases of brain stem death and higher brain. In the presence of
guidelines, the attending physicians will then have only the task of
ascertaining the clinical and laboratory evidence before taking the necessary
action. In cases of doubt and if there is time, 3 trusted specialist physicians
should be consulted about the interpretation of the guidelines and the clinical
and laboratory evidence. They should also be consulted if there are no written
guidelines in the hospital. If there is doubt it is better to take the more
conservative course of initiating and continuing the measures.
3.2 INITIATING LIFE, WITHHOLDING, AND WITHDRAWING ARTIFICIAL
LIFE SUPPORT
3.2.1 INITIATING ARTIFICIAL LIFE SUPPORT
Initiating life support can be waajib, manduub, or makruh. Initiating life support is waajib if there is net benefit to the patient. It is manduub if the benefit may be temporary
and the patient will eventually succumb. In practical terms this means that
life support can be started only for patients with intact brain stem function
with a reasonable chance of recovery. It would be makruh to initiate life support for any reason not related to the
patient’s medical condition such keeping the patient ‘alive’ to give time for
organ harvesting or to delay declaration of legal death for personal or public
interest.
3.2.2 WITHHOLDING ARTIFICIAL LIFE SUPPORT
Withholding life support may be jaiz,
makruh, or haram. Withholding life support is jaiz if there is clinical and laboratory evidence that it will
produce no nett benefit to the patient. This helps avoid the later problems of
withdrawal because withholding is psychologically easier than withdrawing.
Under the Law the distinction between the withholding and withdrawal is minor
because the intention and the consequences are the same. In practical terms
life support should be withdrawn in cases of brain stem death. It should also
be withdrawn in cases of imminent death to avoid waste of resources. It is makruh to withhold life support on the
basis of poverty or advanced age of the patient. It is haram to withhold life support on the basis of discrimination
according to race, caste, religion, or political beliefs. Life support cannot
be withheld from an infant born with severe congenital disease on the grounds
that even it survives it will not lead a normal life. The ruling on withholding
life support for a persistently vegetative patient requires further discussion.
3.2.3 WITHDRAWING LIFE SUPPORT
Withdrawing life support can be jaiz or haram. Life support withdrawal is jaiz in case of clear death, mawt
yaqiin. If the brain stem is dead continuing life support is a waste of
resources. Withdrawal of life support in such a case will free an intensive
care bed for the next needy person. Withdrawing life support from a patient
with a functioning brain stem on the basis of sparing him further pain and
suffering is euthanasia and is clearly haram.
There is no qisaas for death following
withdrawal of life support from a patient with brain stem death.
3.3 INITIATING, WITHHOLDING, AND
WITHDRAWING CONVENTIONAL TREATMENT
3.3.1 INITIATING CONVENTIONAL
TREATMENT
When a patient presents in a
severe condition, it is waajib to
initiate emergency supportive treatment like blood transfusion while the
clinical condition is being assessed to decide on definitive treatment. When
the assessment is completed, a decision is made whether to institute
conventional treatment. This decision is based purely on consideration of the
net benefit of that treatment. If there is no net benefit the treatment should
not be started. In case of uncertainty treatment is instituted and the
situation is reviewed later.
3.3.2 WITHHOLDING CONVENTIONAL
TREATMENT
Withholding conventional
treatment is a difficult process because of the presumption of benefit. It is jaiz to withhold conventional treatment
from a patient with brain stem death. It is also jaiz to withhold conventional treatment from a patient whose
imminent death is certain and initiating treatment is considered a waste of
resources. Withholding conventional treatment from a patient in a persistent
vegetative state needs further discussion.
3.3.3 WITHDRAWING CONVENTIONAL
TREATMENT
The condition of the patient should
be reviewed on a continuous basis. If on review the treatment is found to have
no net benefit then it is jaiz to
withdraw conventional treatment. The decision to withdraw should be based on
clinical and laboratory evidence following established hospital guidelines. It
is jaiz to withdraw conventional
treatment if death is imminent. It is waajib
to withdraw treatment if it is causing severe side-effects with immediate risk
to life. The treatment should never be withdrawn if there are any doubts about
its net benefits. Withdrawal of conventional treatment from patients in
persistent vegetative states requires further discussion.
3.4 INITIATION, WITHHOLDING,
WITHDRAWING ARTIFICIAL NUTRITION AND/OR
HYDRATION
3.4.1 INITIATION OF ARTIFICIAL
NUTRITION AND HYDRATION
Artificial nutrition and
hydration is providing food and water using a nasogastric tube, a gastrostomy
tube, or parenteral nutrition through intravenous infusion. These artificial
means are considered a form of basic medical treatment and are a right of each
patient. It is waajib to provide
nutrition and hydration for all patients until they die. Continuous review will
be necessary to ensure that there is benefit and no harm from the nutrition and
hydration.
3.4.2 WITHHOLDING ARTIFICIAL
NUTRITION AND/OR HYDRATION
Artificial nutrition and
hydration cannot be withheld because they are basic treatment. Even in cases in
which there is no certainty about net benefit, they should be continued for the
comfort that they give the patient.
3.4.3 WITHDRAWING ARTIFICIAL
NUTRITION AND/OR HYDRATION
Artificial nutrition and
hydration can be withdrawn in cases of imminent death because they will be
serving no additional purpose. The situation is complicated if the patient is
in a persistent vegetative state and is kept alive by artificial nutrition and
hydration. Such patients can be kept for a long time measured in years and not
in days. Artificial nutrition and hydration are of benefit in such a case but
they will not contribute in any way to a reversal of the clinical condition. If
resources permit, they should be continued because withdrawal is a difficult
decision that will appear like depriving a living person of water and food so
that they can die. If there are resource constraints the matter should be referred
to a court of law for a judgment.
3.5 PROVISION OF NORMAL NUTRITION
AND/OR HYDRATION
For patients who cannot benefit
from any further medical intervention, ordinary nutrition and hydration are
provided until the moment of death. Stopping normal feeding and hydration may
be euthanasia that is forbidden.
3.6 APPLICATION TO SPECIFIC CASES
3.6.1 ANENCEPHALY
In anencephaly there is no
cerebrum but the brain stem in intact. An anencephalic infant has
cardio-respiratory function. The anencephalic infant is living but will
eventually succumb. No measures should be taken to support life but food,
hydration, and antibiotics should be given a indicated. No measures should be
taken to hasten death. Nature should be left to take its course. It is
conceivable that in the future medical technology will enable such infants lead
a normal life.
3.6.2 PERSISTENT VEGETATIVE STATE
Patients in persistent vegetative states can be given
ordinary nutrition and hydration. These cannot be withdrawn without seeking
court permission.
3.6.3 STROKE PATIENTS
Stroke destroys parts of the brain. Stroke victims do not
understand and may not be able to swallow. Normal hydration and nutrition
should be continued until the moment of death.
4.0 CARDIO-PULMONARY
RESUSCITATION
4.1 DEFINITION
Cardio-pulmonary resuscitation
involves measures to reverse respiratory failure and / or cardiac failure.
4.2 LEGAL RULINGS ON CPR
In normal patients with
potentially curable conditions CPR is waajib
under the purpose of preserving life. In terminal patients with irreversible
conditions, CPR may have no long-term benefit. We therefore need to make a
decision in whom we should attempt CPR and in whom we should not. CPR should
not be attempted where it is not likely to succeed. CPR should not be attempted
if its success will be momentary and the patient will succumb again to
cardio-pulmonary arrest. CPR should not be withheld on the grounds that it is
late and the patient has already suffered brain damage. It should also not be
withheld on the grounds that recovery will prolong the patient’s suffering and
pain. The decisions on CPR should not involve considerations of future benefit.
It should be limited to the sole benefit of reviving the cardio-respiratory
system. Premature infants and infants with congenital anomalies should not be
denied CPR on the grounds of poor future prognosis. Parents cannot refuse CPR
that physicians feel can succeed. Physicians cannot be forced by parents to
undertake CPR with no prospect of success. Cases of doubt should be referred to
the courts.
5.0 ADVANCE DECISIONS
Patients can express their
preference for CPR in cases of doubt about its success. If there is a chance of
success patient wishes on withholding CPR cannot be respected because of the
immediate and intimate involvement with preserving life. If a patient did not
express any wishes regarding CPR, the physicians should do their best to revive
him if there is a likely benefit.
To make life easier for
physicians patients may be asked to make decisions about what to do if they get
into cardio-respiratory failure. A Do Not Attempt Resuscitation (DNAR) order
can be made by the physician after a clinical assessment, listening to the
wishes of the patient, and other relevant legal considerations. If patients
insist on CPR even if clinical evidence suggests its futility it should be
provided to them. There are situation in which the physician can write a DNR
order for an incompetent patient if he judges that to be in the best interests
of the patient.
Case #1: A patient with brain stem death is kept on artificial life
support at the insistence of the family because announcing the death
immediately will have an adverse effect on the values of the family business on
the stock exchange.
Case #2: The family took an unconscious man to hospital reluctantly
because they believed he was dead. He was admitted to the ICU and was put on
artificial life support. For a period of 4 weeks the family insisted on
withdrawal of life support because they would be ruined financially by the high
ICU costs. The physicians refused withdrawal of life support because his brain
stem was functional. The patient woke up in the 5th week.
Case #3: A patient is brought to the emergency room after a car
accident. The examining doctor found some signs of life but refused to
institute life support because he was convinced it was futile. The patient died
a few minutes later. The accompanying family members were furious and accused
the doctor of negligence. They threatened to sue. The doctor advised them to
wait for results of the postmortem examination that would show that death was
inevitable. They refused to have any postmortem because it was against their
religious beliefs.
Case #4: A patient admitted to the ICU after a car accident was
confirmed by 3 specialist surgeons to be in a persistent vegetative state. The
doctors wanted to discontinue life support but the family refused because there
were signs of life like reflex flexion of joints and blinking of the eyes. The
hospital decided to seek a court injunction after keeping the patient in the
ICU for 6 months without any obvious improvement.
Case #7: An unconscious patient with cancer
metastasis all over his body gets a cardiac arrest and is resuscitated and is
discharged to a normal ward. He gets a second arrest after 2 months and the
resuscitation is repeated. He stays in the hospital for a whole year with
arrests occurring on the average once every 6-8 weeks. The physicians call a
meeting to discuss the possibility of a DNR order.
__________________
[1] The text but not the cases were delivered as an expert opinion at the
16th Session of the Fiqh Academy of India held at Jamia Islamia
darul Uloom Muhazzabpur Azamghar near Varanasi India on 01st
April 2007 by Professor Dr Omar Hasan Kasule Sr.