Lecture to 3rd year medical students at the Kulliyah of Medicine International Islamic University, Kuantan, Malaysia July 2007 by Professor Omar Hasan Kasule MB ChB(MUK), MPH (Harvard), DrPH (Harvard) Professor of Epidemiology and Islamic Medicine, Institute of Medicine Universiti Brunei Darussalam
1.0 ETIQUETTE WITH PATIENTS and FAMILIES
1.1 BED-SIDE VISITS
The physician-patient interaction is both professional and social. The bedside visit fulfills the brotherhood obligation of visiting the sick. The human relation with the patient comes before the professional technical relation. It is reassurance, psychological and social support, show of fraternal love, and sharing. A psychologically satisfied patient is more likely to be cooperative in taking medication, eating, or drinking. The following are recommended during a visit: greeting the patient, dua for the patient, good encouraging words, asking about the patient’s feelings, doing good/pleasing things for the patient, making the patient happy, and encouraging the patient to be patient, discouraging the patient from wishing for death, nasiihat for the patient, reminding the patient about dhikr. Caregivers should seek permission, idhn, before getting to the patient. They should not engage in secret conversations that do not involve the patient.
1.2 ETIQUETTE OF THE PATIENT
The patient should express gratitude to the caregivers even if there is no physical improvement. Patient complaints should be for drawing attention to problems that need attention and not criticizing caregivers. The patient should be patient because illness is kaffaarat and Allah rewards those who surrender and persevere. The patient should make dua for himself, caregivers, visitors, and others because the dua of the patient has a special position with Allah. When a patient sneezes he should praise Allah and the mouth to avoid spread of infections. It is obligatory for the attendants to respond to the sneezer. The patient should try his best to eat and drink although the appetite may be low. The caregivers can not force the patient to eat. They should try their best to provide the favorite food of the patient. The believing patient should never lose hope from Allah. He should never wish for death. The patient should try his best to avoid anger directed at himself or others. Getting angry is a sign of losing patience.
1.3 ETIQUETTE OF THE CARE-GIVER
The caregiver should respect the rights of the patient regarding advance directives on treatment, privacy, access to information, informed consent, and protection from nosocomial infections. Caregivers must be clean and dress appropriately to look serious, organized and disciplined. They must be cheerful, lenient, merciful, and kind. They must enjoin the good, have good thoughts about the patients, husn al dhann, and avoid evil or obscene words. They must observe the rules of lowering the gaze, ghadh al basar, and khalwat. Caregivers must have an attitude of humbleness, tawadhu'u, They cannot be emotionally-detached in the mistaken impression that they are being professional. They must be loving and empathetic and show mercifulness but the emotional involvement must not go to the extreme of being so engrossed that rational professional judgment is impaired. They must make dua for the patients because qadar can only be changed by dua. They can make ruqya for the patients by reciting the two mu’awadhatain or any other verses of the Qur’an. They must seek permission, isti' dhaan, when approaching or examining patients. Medical care must be professional, competent, and considerate. Medical decisions should consider the balance of benefits and risks. The general position of the Law is to give priority to minimizing risk over maximizing benefit. Any procedures carried out must be explained very well to the patient in advance. The caregiver must never promise cure or improvement. Every action of the caregiver must be preceded by basmalah. Everything should be predicated with the formula inshallah, if Allah wishes. The caregivers must listen to the felt needs and problems of the patients. They should ask about both medical and non-medical problems. Supportive care such as nursing care, cleanliness, physical comfort, nutrition, treatment of fever and pain are as important as the medical procedures themselves and are all what can be offered in terminal illness. Caregivers must reassure the patients not to give up hope. Measures should be taken to prevent nosocomial infections.
1.4 ETIQUETTE OF INTERACTION BETWEEN GENDERS
Both the caregiver and patient must cover awrat as much as possible. However, the rules of covering are relaxed because of the necessity, dharurat, of medical examination and treatment. The benefit, maslahat, of medical care takes precedence over preventing the harm inherent in uncovering awrat. When it is necessary to uncover awrat, no more than what is absolutely necessary should be uncovered. To avoid any doubts, patients of the opposite gender should be examined and treated in the presence of others of the same gender. The caregivers should be sensitive to the psychological stress of patients, including children, when their awrat is uncovered. They should seek permission from the patient before they uncover their awrat. Caregivers who have never been patients may not realize the depth of the embarrassment of being naked in front of others. Medical co-education involves intense interaction between genders: Teacher-student, student-student, and teacher-teacher. Interacting with colleagues of the opposite gender raises special problems. Norms of dress, speaking, and general conduct; class-room etiquette; social interaction; laboratory experiments on fellow students; Clinical skills laboratory: learning clinical skills by examining other students; Operation theatre. Medical personnel of opposite genders should wear gender-specific garments during surgical operations because Islam frowns on any attempt to look like the opposite gender. Shari’at guidelines on interaction with patients of the opposite gender should be followed. Taking history, physical examination, diagnostic procedures, and operations should preferably be by a physician of the same gender. In conditions of necessity a physician of the opposite gender can be used and may have to look at the ‘awrat or touch a patient. The conditions that are accepted as constituting dharuurat are: skills and availability. The preference between a Muslim of opposite gender vs non-Muslim of same gender depends on the local situation.
1.5 DEALING WITH THE FAMILY
Visits by the family fulfill the social obligation of joining the kindred and should be encouraged. The family are honored guests of the hospital with all the shari’at rights of a guest. The caregiver must provide psychological support to family because they are also victims of the illness because they anxious and worried. They need reassurance about the condition of the patient within the limits allowed by the rules of confidentiality. The family can be involved in some aspects of supportive care so that they feel they are helping and are involved. They should however not be allowed to interrupt medical procedures. Caregivers must be careful not to be involved in family conflicts that arise from the stresses of illness.
2.0 ETIQUETTE WITH THE DYING
2.1 COMFORT:
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. As much as possible the dying patient should be in a state of rutual purity, wudhu, all the time.
2.2 IBADAT:
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. Physical movements of salat should be restricted to what the patient's health condition will allow. The prophet gave guidelines on salat even for the semi-conscious patient, salat al mughma ‘alayhi. The terminal patient is exempted from saum because of the medical condition. 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. lllness does not interefere with the payment of zakat since it is a duty related to the wealth and not the person. The terminal patient is excused from the obligation of hajj. It is also wrong for a patient in terminal illness to go for hajj with the intention of dying and being buried in Hejaz.
2.3 SPIRITUAL PREPARATION.
Spiritual preparation involves allaying anxiety, presenting death as a positive event, thinking of Allah, and repentance. Caregivers should allay fear and anxiety about impending death. 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. The soul of the believer is removed gently. Believers will look at death pleasantly as an opportunity to go to Allah. Allah loves to receive those who love going to Him. The patient should be encouraged to look forward to death because death from some forms of disease confers martyrdom. The patient should be told that Allah looks forward to meeting those who want to meet Him (KS525). Dying with Allah's pleasure is the best of death and is a culmination of a life-time of good work. Thinking well of Allah is part of faith 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 makes the process of dying more acceptable. The dying patient should be encouraged to repent because Allah accepts repentance until the last moment.
2.4 LEGAL PREPARATION
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, shuruut al wasiyyat. 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, waqf, 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. 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. 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. 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 them. He however would offer the prayer if someone undertook to pay the debt. If the deceased has some property, the debts are settled before any distribution of the property among the inheritor.
2.5 DEATH, BURIAL, and MOURNING
The last moments are very important. The patient should be instructed such that the last words pronounced are the kalimat, the testament of the faith. Once death has occurred the body is placed in such a way that it is facing the qiblat. Eyes are closed and the body is covered. Qur'an and dua are then recited. The health care giver should take the initiative to inform the relatives and friends. They should be advised about the shariah rules on mourning. Weeping and dropping tears are allowed. On receiving the news of death it suffices to say 'we are for Allah and to Him we will return'. The following are not allowed: tearing garments, shaving the head, slapping the cheek, wailing, and crying aloud. Relatives are comforted by telling them hadiths of the prophet about death. These hadiths talk about the reward of the person who loses his beloved one and he is patient. The health care team should practice total care by being involved and concerned about the processes of mourning, preparation for burial and the actual burial. They should participate along with relatives as much as is possible. The preparation of the body for burial can be carried out in the hospital. The body must be washed and shrouded before burial. Perfume can be put in the water used for washing the body. The washing should start with the right. The organs normally washed in wudhu are washed first then the rest of the body is washed. Perfume can be used except for those who died while in a state of ihram. Women's hair has to be undone. After washing the body is shrouded, kafn, in 2 pieces of cloth preferably white in color. As many persons as possible should participate in salat al janazat. Burial should be hastened. Following the procession is enjoined There is more reward for accompanying the funeral procession and staying until burial is completed. The funeral bier is carried by men. Hurrying in marching to the grave is recommended. The body should be buried in a deep grave facing Makka. After burial, the relatives are consoled and food is made for them. Women in mourning should not touch any perfume. Only good things should be said about the deceased.
3.0 ETIQUETTE IN THE HEALTH CARE TEAM
3.1 PRINCIPLES OF GROUP WORK
A group is several interdependent and interacting persons. Work is enjoined in groups that are united, cooperative, open and trusting. Group members must be similar, empathetic, supportive, and sharing. Separation from group is condemned. Group norms must be respected. Breaking norms, secretive behavior, concealment of information, and secret talks destroy groups. Group membership has benefits of integration, stimulation, motivation, innovation, emotional support, and endurance. Group performance is superior to individual performance. Group membership has the disadvantages of arrogance, suppression of individual initiative, member mismatch, and intra-group conflict. Group formation has 4 stages: forming (acquaintance and learning to accept one another), storming (emotions and tensions), initial integration (start of normal functioning), total integration (full functioning), and dissolution. Mature groups have group identity, optimized feedback, decision-making procedures, cohesion, flexibility of organization, resource utilization, communication, clear accepted goals, interdependence, participation, and acceptance of minority views. Groups fail when constituted on the wrong basis, when members cannot communicate, when there is no commonality (interests, attitudes, and goals), and when they have diseases of hasad, nifaq, namiimah, gaybah, kadhb, riyah, kibriyah, hubb al riyasa, tajassus, and dhun al soo. An effective group follows the Qur'an and sunnat, members feel secure and not suppressed, members understand and practice sincere group dynamics, members are competent and are committed to the group and the leadership.
3.2 ETIQUETTE of TEACHING & LEARNING in THE HEALTH CARE TEAM
The hospital health care team is complex and multi-disciplinary with complementary and inter-dependent roles. Members have dual functions of teaching and delivering health care. Most teaching is passive learning of attitudes, skills, and facts by observation. Teachers must be humble. They must make the learning process easy and interesting. Their actions, attitudes, and words can be emulated. They should have appropriate emotional expression, encourage student questions, repeat to ensure understanding, and not hide knowledge. The student should respect the teacher for the knowledge they have. They should listen quietly and respectfully, teach one another, ask questions to clarify, and take notes for understanding and retention. They should stay around in the hospital and with their teachers all the time to maximize learning.
3.3 ETIQUETTE of CARE DELIVERY in THE HEALTH CARE TEAM
Each member of the team carries personal responsibility with leaders carrying more responsibility. Leaders must be obeyed except in illegal acts, corruption, or oppression. Rafidah was good model of etiquette. She a kind, empathetic, a capable leader and organizer, clinically competent, and a trainer of others. Besides clinical activities, she was public health nurse and a social worker assisting all in need. The human touch is unfortunately being forgotten in modern medicine as the balance is increasingly tilted in favor of technology.
3.4 THE HEALTH CARE TEAM: GENERAL GROUP DYNAMICS
Basic duties of brotherhood and best of manners must be observed. Encouraged are positive behaviors (mutual love, empathy, caring for one another; leniency, generosity, patience, modesty, a cheerful disposition, calling others by their favorite names, recognizing the rights of the older members, and self control in anger. Discouraged are negative attributes (harshness in speech, rumor mongering, excessive praise, mutual jealousy, turning away from other for more than 3 days, and spying on the privacy of others).
3.5 THE HEALTH CARE TEAM: SPECIAL GROUP DYNAMICS
Gender-specific identity should be maintained in dress, walking, and speaking. Free mixing of the genders is forbidden but professional contact within the limits of necessity is allowed. Patients of the opposite are examined in the presence of a chaperone. The gaze should be lowered. Modest and covering must be observed. Display of adornments that enhance natural beauty must be minimized.
4.0 USE OF ANIMALS IN RESEARCH
4.1 ENJOINING KINDNESS TO ANIMALS
The prophet enjoined kindness to animals. Saving animals from danger is a noble act. There is reward for kindness to animals.
4.2 PROHIBITING CRUELTY TO ANIMALS
Cruelty and physical abuse of animals are prohibited. There is severe punishment is reserved for cruel treatment if animals. Face branding, beating, cursing, sexual abuse, sexual abuse, and wanton killing of animals were forbidden.
4.3 ANIMAL RESEARCH: PURPOSE and RELEVANCE
The purpose of animal research is to spare humans from risk. Findings in animals are relevant to humans because of similarities in physiology and biochemistry. However findings in animals cannot be directly transferred to humans; research on humans is still necessary for a definitive conclusion. Animal research is exploratory and not definitive.
4.4 THE LAW AND ANIMAL EXPERIMENTATION
The position of the Law is that animal experiments are allowed if a prima facie case can be established that the result of the research is a necessity, dharuurat. Dharuurat under the Law is what is necessary for human life. The regulations of necessity require that no more than the absolute minimum necessary should be done, al dharurat tuqaddar bi qadiriha. Animal research has definite risks for the animals that are not balanced by any benefits: pain, suffering, permanent injury, inhumane treatment and operations, and being killed (sacrificed). Thus use of animals in justifiable on the basis of taskhiir and not any benefits that accrue to the animals. The risks to humans from animal research are minimal in the short term; long-term effects are difficult to fathom. The purposes and principles of the Law can be used to analyze all legal aspects of animal experimentation.
4.5 OUTSTANDING ETHICO-LEGAL ISSUES
There are limits to taskhiir. Humans were not given a carte blanche to exploit animals in any way they liked. They have to conform to the Law and moral guidelines. If the results of animal experimentation will lead to protection of human life, then research is allowed to proceed because then it is a necessity. This is similar to killing animals for food, a necessity for human life. If research is for general scientific curiosity unrelated to any tangible human benefit, then it is beyond the authorization of taskhiir. There are differences among animals. Animals considered dangerous and must be killed. Use of such animals for research should therefore raise fewer ethical objections than other animals. All types of animals used in research cannot be subjected to unnecessary pain and suffering. Animals whose flesh is edible are preferably used in research. Use of animals that are haram like the pig should be avoided as much as possible and should be considered only in cases of dharurat. Animals, like humans, have rights to enjoyment of life and good health. The researcher must therefore follow Islamic etiquette to minimize animal suffering. The basmalah is said at the start of an animal experiment, similar to slaughter of animals for food, in recognition of the fact that the experiment is carried out with the permission of the creator under the requirements of taskhiir. The animals must be shown kindness and respect. They should not be subjected to the psychological pain of seeing other animals in pain or being sacrificed. Pain must be minimized both during the experiment and when the animal is being terminally sacrificed. This is based on the legal requirement of slaughtering animals using a sharp knife and as quickly as possible to prevent pain and suffering. The long-term effects of the experiment on the animal must be considered and efforts made to decrease suffering and pain. The nutritional and medical needs of the animal must be taken care of before, during, and after the research.
5.0 ETIQUETTE OF RESEARCH ON HUMANS
5.1 HISTORICAL BACKGROUND
Early humans experimented with several plants and by trial and error found some to be useful as medicines and others to be poisonous. These early experiments were not planned in a systematic way neither were they documented. Galen founded experimental medicine before 200 CE. Historical experiments were carried out by James Lind In 1747 on scurvy, Dr Edward Jenner in 1798 on small pox, and Goldberger in 1914 on pellagra. Community trials were carried out on vitamin C, the Salk and HBV vaccines, cardiac disease risk factors, and water fluoridation for dental caries. Clinical trials were on streptomycin in TB 1948, aspirin and vitamin C for cancer prevention, alpha-tocopherol and beta-carotene in lung cancer prevention in smokers. Unethical experiments without informed consent were carried out in the 1940s, 1950s, and 1960s. The Nuremberg code of 1946 laid down rules on voluntary informed consent, unnecessary experiments, animal before human experimentation, physical and mental suffering, scientific qualification of researchers, freedom of subjects to withdraw, and stopping the investigation if patient are in danger. The Helsinki Declaration of 1964 incorporated the Nurenberg code. Its basic principles were: conformity generally accepted scientific principles, qualified researchers, risk benefit assessment, research subject welfare, and full disclosure before informed consent. The Nuremberg and Helsinki codes on experimentation did not stop all unethical research. They lack were neither laws enforceable by the state nor moral standards enforced by conscience. They are an unsuccessful attempt at bridging the secular divide between morality and public life. Islam on the other hand looks at problems of human experimentation as purely legal issues. The Law provides adequate guidelines and safeguards. Islamic Law, unlike western law, incorporates morality in its fabric. There is therefore no need to have special ethical codes outside the Law.
5.2 PURPOSES OF THE LAW IN HUMAN EXPERIMENTATION
The Islamic ethical theory on research is based on the 5 purposes of the Law, maqasid al shari’at, religion, life, progeny, the mind, and wealth. If any of the 5 necessitiesis at risk permission is given to undertake human experiments that would otherwise be legally prohibited. Therapeutic research fulfills the purpose of protecting health and life. Infertility research fulfils the purpose of protecting progeny. Psychiatric research fulfills the purpose of protecting the mind. The search for cheaper treatments fulfills the purpose of protecting wealth.
5.3 PRINCIPLES OF THE LAW IN HUMAN EXPERIMENTATION
The 5 principles of the Law guide research. Research is judged by its underlying and not expressed intentions. Research is prohibited if certainty exists about beneficial existing treatment. Research is allowed if benefit outweighs the risk or if public interest outweighs individual interest. If the risk is equal to the benefit, prevention of a harm has priority over pursuit of a benefit of equal worth. The Law chooses the lesser of the two evils, injury due to disease or risk of experimentation. The principle of custom is used to define standards of good clinical practice as what the majority of reasonable physicians consider as reasonable. Under the doctrine of istishaab, an existing treatment is continued until there is evidence to the contrary. Under the doctrine of istihsaan a physician can ignore results of a new experiment because of some inclination in his mind. Under the doctrine of istislaah preventing a harm has priority over obtaining a benefit.
5.4 INFORMED CONSENT
Informed consent by a legally competent research subject is mandatory. Informed consent does not legalize risky non-therapeutic research with no potential benefit. It is illegal to force participation of the weak (prisoners, children, the ignorant, mentally incapacitated, and the poor) in clinical trials even if they sign informed consent forms.
5.5 OUTSTANDING ETHICO-LEGAL ISSUES
Research on fetal human tissues may encourage abortion. Cadaver dissection and post mortem examination are permitted under necessity. Use of human bodies in auto crass experiments violates human dignity. Genetic experiments may cause diseases hitherto unknown. The Law allows research on ageing as long as the aim is not prolongation of life or preventing death because those aspects are under Allah’s control.