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To be presented at a workshop to be held at the Faculty of Shariah Islamic University of Beirut on 15th April 2011 by Professor Omar Hasan Kasule MB ChB (MUK), MPH (Harvard), DrPH (Harvard) Professor of Epidemiology and Bioethics & Chairman of the Institutional Review Board (IRB) King Fahad Medical City, Riyadh Saudi Arabia.
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 cessation 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support, artificial nutrition, and artificial hydration should not be started or if they had been started should be withdrawn because they have no nett benefit and are a waste of resources.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 They should be withdrawn as soon as brain death is ascertained except when their continuation will maintain vital bodily functions to give time for organ harvesting or for a fetus to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 DNAR order for an incompetent patient if he judges that to be in the best interests of the patient.