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ISLAMIC MEDICAL EDUCATION RESOURCES 04

0304-TERMINAL ILLNESS

Lecture for academic staff of the Faculty of Medicine National University of Malaysia Friday 10th April 2003 by Prof Dr Omar Hasan Kasule Sr. MB ChB (MUK), MPH & DrPH (Harvard) Deputy Dean Kulliyah of Medicine, International Islamic University, Kuantan. E-MAIL omarkasule@yahoo.com . WEBSITE: http://doctor-omar.net/

1.0 PALLIATIVE CARE

Concepts and principles:
A motivation for improving palliative care is the concept of good death. Whereas death in inevitable, much can be done to make the death process as comfortable as possible. The comfort may be physical involving pain relief and general tender loving care. It may also be psychological involving allaying anxieties and fear of death among the terminally ill. The tables could be turned around and the terminal illness can become a pleasant moment. This is because terminal patients are resigned to their fate and are no longer concerned about the routines of life and the anxieties of living and achieving that prevented them before from thinking of loftier and nobler objectives. They realize that they cannot make any more material achievements (wealth, power, and fame) nor can they have any major impact on the world and its affairs. They therefore have time to themselves for reassessing their past in an objective and detached way and with no pressure or haste. This is the time when nobler hitherto hidden human qualities to surface. The terminally ill can forgive those who wronged them. They can afford to be generous to their enemies. They can seek forgiveness for any harm they caused others. And finally and above all they can make peace with their creator.

 

The Qualities of patience, resilience, perseverance in facing pain and certain death appear in the patient who has surrendered to God knowing that the end is near. A surrendering patient gets great reward[i] because he stays composed, calm, and reassured despite the poor disease prognosis. This in a way is human victory against adversity and despair. Only humans are able to maintain a calm state of mind in difficult situations. Animals react in an appropriate way to adversity by agitation and fear.

 

The realization that earthly life is soon coming to an end opens the mind to the alternative life of the hereafter. In good health people hear about the hereafter and talk about it but they are so busy in the pursuit of material pleasures and possessions that they give it no thought. Terminal illness provides an opportunity to think about the life in the hereafter that can be better than life on earth for the righteous.

 

From a historical perspective, palliative care was not an important concern of health care workers for several reasons. In the absence of effective medical and surgical interventions, illnesses were rapidly fatal with little time left for palliative care. The demands on health resources were always so high that preference was always given to the living and the terminally ill were neglected to their fate. It was only the family members who undertook palliative care to the best of their abilities. It is the family-oriented palliative care that has created cultural barriers to seeking professional palliative care. They reason that only the family can care for the dying. Family-oriented palliative care is becoming difficult in today’s industrialized society because the extended family has virtually disappeared and the few members of the nuclear family are busy in their occupational pursuits leaving nobody at home to care for the terminally ill. Thus the need for professional care at freestanding hospices or hospital-based hospices. A compromise has also been struck in some cases by professional palliative care within the home.

 

The following is a summary of guiding Islamic concepts on illness, death, cure, and the etiquette with the terminally ill that form the basis for palliative practice. Illness is not all negative; it has positive human aspects. Death is not a terminal event; it is a transitional event from one state of existence to a better one. The cure of illness or death is in the hands of God; the healthcare givers' role is to make ensure that the remaining lifetime has the highest quality possible. Health care workers must provide a total package to the terminally ill that addresses physical, psychological, spiritual, and legal needs. They should also be involved in the continuum of events before and after death including the burial and mourning processes. The physician bedside visit has both social and professional aspects and should strengthen the patient psychologically. Spiritual preparation to face death involves repeating teachings of Islam on the nature of disease, death, and the hereafter. Caregivers should guide and participate with the relatives and friends through the processes of mourning which include preparation of the body for burial, the burial itself and the post-burial period. This all-round concern and participation of the caregivers with the patient and he relatives are a demonstration of total care.  It comforts the living that when his or her turn comes somebody will care.

 

A pertinent question may be asked: why expend resources in palliative care when we know that the person is terminally ill? There are several ways of justifying palliative care. It is part of respect for human dignity that a person dies in as comfortable a status as possible especially without much pain. The relatives also want to feel that they have done all what they can for the terminally ill and that they have mitigated the suffering of the last moments. The terminally ill of the family may be wealthy and have the resources to pay for expensive terminal care in which case the issue of limitation of resources does not arise.

 

In an era of scarce resources, arguments have been made that the elderly consume disproportionately high resources. It may also be argued that the economic utility of the elderly is low. This is most unethical. The elderly have as much right to health care resources as are the young. The difference may lie in the fact that the elderly may not benefit from some measures in which case it is not useful to undertake them.

 
Organization and content:

Palliative care can be in the home, in a hospice section of a hospital, or in a freestanding hospice. Many patients suffer from pain; powerful analgesics are needed including opiates. The essential drugs for palliative care are non-opiates like paracetamol, mild opiates like codeine, and strong opiates like morphine. Recitation of the Qur’an and supplications are needed in addition to pain control. The role of physicians and nurses in hospice care includes communication and emotional support for the patient and the family. Several modalities of care are used. Symptom management is used for constipation, diarhoea, dysphagia, dyspepsia, nausea, vomiting, anemia, cachexia, hypercalcemia, hiccups, pruritis, dypnoea, cough, hemoptysis, incontinence, hematuria, depression, sadness, anxiety, confusion, weakness, and convulsions. Pain management is necessary. Empowerment is needed for the patient, the carer, and the family. Family conflicts and confusions must be addressed. Team-work and multi-disciplinary approach ensures success. Essential drugs/medications must be available. Other needed services are nutritional support, occupational therapy, social support groups, and communication with the patient and the family. The following complimentary therapies are also used: aromatherapy relaxing treatment, massage, meditation, and relaxation.  

 

Site:

Palliative care can be in a hospice at home, at a hospital-based hospice, or at a community-based hospice. Day care facilities enable combination of home care and institutional care.

 

Ethical and legal issues:

The following ethical issues may arise and have to be addressed: request foe assisted death, telling the whole truth, confidentiality, respect autonomy and setting a limit to treatment. The course of action is individualized and is guided by the Purposes and Principles of the Law.

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2.0 ETIQUETTE WITH THE DYING

Supportive care:

Narcotics are given for severe pain. Drugs are used to allay anxiety and fears. The caregivers should maintain as much communication as possible with the dying. They should attend to needs and complaints and not give up in the supposition that the end was near. Attention should be paid to the patient's hygiene such as cutting nails, shaving hair, dressing in clean clothes.

 

Worship:

As much as possible the dying patient should be in a state of ritual purity, wudhu, all the time. The dying patient should as far as is possible be helped to fulfill acts of worship especially the 5 canonical prayers. Tayammum can be performed if wudhu is impossible[ii]. Physical movements should be restricted to what the patient's health condition will allow. It is wrong for a patient in terminal illness to start fasting on the grounds that he will die anyway whether he ate enough food or not. illness does not interfere with the payment of zakat since it is a duty related to the wealth and not the person. It is also wrong for a patient in terminal illness to go for hajj with the intention of dying and being buried in Hejaz.

 

Spiritual preparation:

Allaying fear: Death of the believer is an easy process that should not be faced with fear or apprehension. The process of death should be easier for the believer than the non-believer[iii]. The soul of the believer is removed gently[iv]. Believers will look at death pleasantly as an opportunity to go to Allah. Allah loves to receive those who love going to Him[v].

 

Death as martyrdom: The patient should be encouraged to look forward to death because death from some forms of disease confers martyrdom. Dying an epidemic is martyrdom[vi]. Death in a strange place is martyrdom[vii]. Death from peritonitis is martyrdom[viii]. Death by drowning is martyrdom[ix]. Death from pleurisy is martyrdom[x]. Death in the post-partum period is martyrdom[xi].

 

Looking forward to meeting God: They should be told that Allah looks forward to meeting those who want to meet Him[xii]. Dying with Allah's pleasure[xiii] is the best of death and is a culmination of a life-time of good work.

 

Thinking of God: Thinking well of Allah is part of faith[xiv] and is very necessary in the last moments when the pain and anxiety of the terminal illness may distract the patient's thoughts away from Allah. Having hope in Allah at the moment of death[xv] makes the process of dying more acceptable.

 

Repentance: The dying patient should be encouraged to repent because Allah accepts repentance until the last moment[xvi].

 

Legal preparation:

Helping patient make a will: During the long period of hospitalization, the health care givers develop a close rapport with the patient. A relationship of mutual trust can develop. It is therefore not surprising that the patient turns to the care givers in confidential matters like drawing a will. The health care givers as witnesses to the will must have some elementary knowledge of the law of wills and the conditions of a valid will. One of these conditions is that the patient is mentally competent. The law accepts clear signs by nodding or using any other sign language as valid expressions of the patient's wishes. The law allows bequeathing a maximum of one third of the total estate to charitable trusts or gifts. More than one third of the estate can be bequeathed with consent of the inheritors. Debts must be paid before death or before the division of the estate.

 

Organ donation: A terminal patient can make living will regarding donation of his organs for transplantation. The caregiver must explain all what is involved so that an informed decision is made. The caregiver may be a witness. It is however preferable that in addition some members of the family witness the will to ensure that there will be no disputes later.

 

Divorce in terminal illness: The caregiver may be a witness to pronouncement of divorce by a terminally ill patient. The pronouncement has no legal effect if the patient is judged legally incompetent on account of his illness. If the patient is legally competent, the divorce will be effective but the divorcee will not lose her inheritance rights[xvii].

 

Settlement of outstanding debts: The caregiver should advise the terminal patient to remember all his outstanding debts and to settle them. The prophet used to desist from offering the funeral prayer for anyone who died leaving behind debts and no assets to settle. He however would offer the prayer if someone undertook to pay the debt[xviii]. If the deceased has some property, the debts are settled before any distribution of the property among the inheritors[xix].

 

3.0 ARTIFICIAL LIFE SUPPORT

Terminal illness is defined as illness from which recovery is not expected. 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) Whole-brain death (c) Higher brain death. If death is defined in the traditional way, life support cannot be withdrawn at any stage. If the definition of higher brain death is accepted, life support will be removed from persons who still have many life functions (like respiration, circulation, sensation). Since he 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. Islamic law strictly forbids action based on uncertainty, shakk. The question of quality of life is also raised in the definition of life. The assumption is that there must be some quality to human life for it to be worth living. The exact definition of quality is still elusive. It is argued that euthanasia saves the terminally ill from a painful and miserable death. This considers only those aspects of the death process that ordinary humans can perceive. 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 pain. 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 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. 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. 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 euthanasia decisions. Physicians and other health care givers may abuse euthanasia and kill whom they want. They could be bribed to kill people by either family members or others.

 

4.0 EUTHANASIA

Euthanasia is carried out illegally for patients in persistent vegetative states or those in terminal illness with a lot of pain and suffering. Active euthanasia, an act of commission that causes death, is taking some action that leads to death like a fatal injection. Passive euthanasia, an act of omission, is letting a person die by taking no action to maintain life. Terminal sedation has the dual effect of controlling pain and causing respiratory failure. Islamic Law views all forms of euthanasia, active and passive, as murder. Those who give advice and those who assist in any way with suicide are guilty of homicide. A physician is legally liable for any euthanasia actions performed even if instructed by the patient. Euthanasia violates the Purpose of the Law to preserve Life by taking life. It violates the purpose of religion by assuming Allah’s prerogative of causing death. It violates the purpose of preserving progeny by cheapening human life making genocide more acceptable. According to the principle of intention, there is no distinction between active and passive euthanasia because the end-result is the same. The principle of injury makes euthanasia illegal because it tries to resolve the pain and suffering of terminal illness by causing a bigger injury which is killing. Continuation of pain in terminal illness is a lesser evil than euthanasia. Prohibition of euthanasia closes the door to corrupt relatives and physicians killing patients for the sake of inheritance by claiming euthanasia. Euthanasia reverses the customary role of the physician as a preserver into a destroyer of life. A distinction in law exists between withholding life support and withdrawing it. 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. Continuation is easier that starting. Euthanasia like other controversial issues in better prevented than waiting to resolve its attendant problems. The patient cannot legally agree to termination of life because life belongs to Allah and humans are mere temporary custodians. The determination of ajal is in the hands of Allah. A patient who has legal competence, ahliyyat, makes final decisions about medical treatment and nutritional support. Patients in terminal illness often lose ahliyyat and cannot make decisions on their treatment. A living will is a non-binding recommendation and it can be reversed by the family. They however cannot make the decision for euthanasia. Our analysis has shown that there is no legal basis for euthanasia. Physicians have not right to interfere with ajal that was fixed by Allah. Disease will take its natural course until death. Physicians for each individual patient do not know this course. It is therefore necessary that they concentrate on the quality of the remaining life and not reversal of death. Life support measures should be taken with the intention of quality in mind. Instead of discussing euthanasia, we should undertake research to find out how to make the remaining life of as high a quality as is possible. The most that can be done is not to undertake any heroic measures for a terminally ill patient. However ordinary medical care and nutrition cannot be stopped. This can best be achieved by the hospital having a clear and public policy on life support with clear admission criteria and application to all patients without regard for age, gender, SES, race, or diagnosis.


[i] (KS505 Muslim K45 H54, Muwatta K50 H5)

[ii]  (KS146 Bukhari K7 B7, Abudaud K1 B124, Abudaud K1 B125, Ibn Majah K1 B92, Zaid H65, Ahmad 4:265)

[iii] (KS525 Muslim K51 H75, Nisai K21 B9, Ibn Majah K37 B31, Ahmad 2:364, Ahmad 4:287, Ahmad 4:295, Ahmad 6:139, Tayalisi H753, Tayalisi H2389, Ibn Hisham p269). The believer dies with ‘araq al jabiin (KS525 Tirmidhi K8 B10, Nisai K21 B5, Ibn Majah K6 B5, Ahmad 5:357, Ahmad 5:360, Tayalisi H808)

[iv] (KS525 Tirmidhi K8 B8, Abudaud K19 B10, KS525 Ahmad 1:297, Tayalisi H753)

[v] (KS525)

[vi] (KS298 Bukhari K60 B54, Bukhari K76 B30, Bukhari K76 B31, Bukhari K82 B15, Muslim K33 H166, Ibn Majah K6 B61, Ibn Sa’ad J8 p356, Ahmad 3:150, Ahmad 3:220, Ahmad 3:223, Ahmad 3:258, Ahmad 3:265, Ahmad 4:128, Ahmad 4:185, Ahmad 4:200, Ahmad 4:395, Ahmad 4:413, Ahmad 4:417, Ahmad 5:81, Ahmad 6:64, Ahmad 6:145, Ahmad 6:154, Ahmad 6:251, Ahmad 6:255, Tayalisi H534, Tayalisi H2113)

[vii] (KS298 Ibn Majah K6 B60)

[viii] (KS298 Bukhari K76 B30, Nisai K21 B110, Ahmad 4:200)

[ix] (KS298 Abudaud K15 B9)

[x] (KS298 Ahmad 4:157)

[xi] (KS 298 Ahmad 4:200, Ahmad 5:409)

[xii] (KS525)

[xiii] (KS525 Ibn Majah Intr B9)

[xiv] (KS525 Muslim K51 H81, 82, Abudaud K20 B21, Ibn Majah K37 B14, Ibn Sa’ad J2 Q2 p45, Ahmad 3:293, Ahmad 3:315, Ahmad 3:325, Ahmad 3:330, Ahmad 3:334, Ahmad 3:390, Tayalisi H1779)

[xv] (KS525 Tirmidhi K8 B11)

[xvi]  (KS143 Muslim K49 H46, Muslim K49 H47, Muslim K49 H48, Ibn Majah K37 B30)

[xvii] (KS351 Abudaud K18 B9, Abudaud K18 B12, Ibn Majah K23 B12, Darimi K21 B24, Muwatta K27 H16)

[xviii] (KS162 Bukhari K38 B3, Bukhari K39 B3, Abudaud K18 B5, Bukhari K69 B15, Abudaud K22 B9, Ibn Majah K15 B9, Darimi K18 B53, Ahmad 2:290, Ahmad 2:380, Ahmad 2:399, Ahmad 2:453, Ahmad 3:330, Ahmad 4:47, Ahmad 4:50, Ahmad 5:297, Ahmad 5:301, Ahmad 5:304, Ahmad 5:311)

[xix]  (KS239 Bukhari K57 B13, Tirmidhi K28 B6, Ibn Majah K15 B20, Darimi K21 B39, Darimi K22 B16, Ahmad 1:79, Ahmad 1:131, Ahmad 1:144, Ahmad 4:136, Ahmad 5:7, Tayalisi H179)

Professor Omar Hasan Kasule Sr. April 2003