© The Author(s) 2015
Mohammed Ali Al-Bar and Hassan Chamsi-PashaContemporary Bioethics10.1007/978-3-319-18428-9_66. Autonomy
(1)
Medical Ethics Center, International Medical Center, Jeddah, Saudi Arabia
(2)
Department of Cardiology, King Fahd Armed Forces Hospital, Jeddah, Saudi Arabia
Autonomy is a Greek word, autos: self, nomos: govern, rule, i.e., self-rule or self-government in the political sense, but it took a wider meaning as liberty rights, privacy, individual choice, freedom of the will, causing one’s own behavior, and controlled by none except himself [1].
Personal autonomy means self-rule free from being controlled by others and from inadequate understanding that prevent meaningful choice. If the ability of free choice is curtailed by imprisonment, duress, or prodding (circumstances and environment) or by limitation of mental capacity or being a minor, we cannot speak of autonomy. Even if the person is addicted to alcohol or drugs his autonomy will definitely be curtailed.
In order to have autonomy two conditions are essential:
i.
Free will: being independent from controlling influences from without (incarceration, threatening, duress, effect of the media, friends, and comrades or from within due to mental deficiency, disease, or age being minor or very old, or due to drugs of addiction or alcohol).
ii.
Capacity of intentional action by an adult competent individual.
A person may be unable to comprehend financial matters, and hence needs a true advice, but he can comprehend many other things, e.g., buying a car or even a house. He may be able to decide about his treatment or being enrolled in medical research.
Informed Consent and Transparency
In order to have autonomy he should be well informed on the subject. The consent obtained is invalid if he is not informed, even if there is no coercion. In financial matters it is called transparency, and if there is no transparency the deal or contract can become invalid.
In Islam, if there is concealment of some facts or worse there are some lies, the deal or contract becomes invalid because of “Gharar” [2], i.e., being deceived by withholding important information. In pre-Islamic Arabia, some of the deals and contracts were so ambiguous that Prophet Muhammad (PBUH) considered these deals invalid. Any deceit or concealment of important information about the house you are going to buy or the land you are going to till or the machine you are going to work with makes the contract invalid.
Similarly, any coercion makes the contract invalid. The pre-Islamic Arabs had slave girls, whom they forced them into prostitution to gain money. Islam emancipated them from this slavery and they were declared by the Qur’an to be forgiven, as they were driven into this dirty business without their will (Surah al Noor 24/33).
We have already alluded to the many verses of the Qur’an which declared that there is no compulsion in religion (Surah 2/256) and that each person has the full will to accept Islam or refuse it (Surah 18/29). The Qur’an said to the PBUH “Are you going (O Mohammed) to compel the people to believe” (Surah 10/99) and “You are not in control of them” (Surah 88/22). The Qur’an is replete with verses that orders freedom of faith and human personal responsibility [3].
Therefore there should be no intrusion, coercion, or even prodding to accept or refuse any modality of medical intervention. The exceptions are:
a.
In an emergency where there is a life-threatening situation whereby action and intervention should be immediate in order to save life and ward off serious consequences.
b.
In a situation, where the patient is a minor or mentally deficient, and the guardian adamantly refuses the treatment, which may be essential for the person under his custody. The magistrate should appoint another guardian or give authority to the treating physicians to implement the necessary required treatment, e.g., blood transfusion to the child of Jehovah witness parents, or an operation for appendicitis or hemodialysis required for a child or for a mentally retarded person.
If the patient is a competent adult then the situation and dangers should be explained to him/her but the decision is his or hers.
c.
In immunization schemes decided by the government to protect children and in cases of infectious diseases the treatment, if available becomes imperative.
d.
In cases where a woman is in labor and there is a prolapsed cord that strangles the baby, this needs immediate caesarian operation. If the woman refuses to consent to the operation, the baby might die or suffer from serious sequelae in his mental capacity or nervous system or both.
The Islamic Jurists of the International Islamic Jurists Council (OIA) passed a ruling allowing the caesarian operation even if the lady and her husband refused the operation as it is an emergency to save a human life from death or serious sequelae [4]. Apart from these situations the decision of the patient should be respected if he/she is competent (mentally), and is an adult, not under the effect of alcohol or drugs. If there is misunderstanding of the seriousness of his/her medical condition, it should be carefully explained, but the final decision is his or hers. The volition and autonomy will definitely be curtailed by alcohol, drug of addiction, and the psychiatric condition of the person.
Advanced directives may be required, where a person is suffering from a chronic disease, or when he had cancer. He should be offered choices of what he/she wants to be done if for example his heart stops suddenly. Do not resuscitate (DNR) policy should be decided by the treating physicians, and it should remain a medical decision, though the situation could be discussed pre-hand if the patient is competent and wants to discuss this matter. He/she could appoint a proxy to act in his name, if he becomes incompetent because of the disease.
For an action to be autonomous it needs freedom from constraints and ability to comprehend its situation. “People’s actions are rarely, if ever fully autonomous” [1], however they should have a fairly good knowledge of the modality of treatment or research, its side effects along with its presumed advantages, in order to give an informed consent.
The Role of the Family
In Asia, Africa, and the Middle East the family plays a major role in medical decisions. The patient whether he is elderly or a young person, has to listen to the opinion of his close family to the mode of treatment he/she is going to accept. In some places in Africa, the elders of the tribe, will decide in serious matter of life and death.
The Western attitude of individualism it is not accepted in many societies. In most countries of Asia, Africa, and the Middle East there is no health insurance for the public at large. Usually the family bears the burden of any cost of medical intervention.
Similarly there is no welfare state, and hence the breadwinner takes care of the elderly, the children, and ladies. Though females and children may be working at home, and in the field, or looking after the cattle and sheep of the family, they are usually not the breadwinners.
The role of the family and close friends should be respected in places where they have different philosophies and cultures that differ greatly from Western liberal, individualistic patterns. Even in the West itself, different minorities, e.g., Chinese, Indians, Pakistanis, etc., the role of the family should be respected, as the patients themselves agree to this role, and health providers have to understand that there are different cultures that do not give priority to autonomy, as it is understood in the West.
Advice and Waiver
Sometimes that patient will say to his doctor: “What is your advice in my condition? What would you do if your parent was in my situation? The physician may feel embarrassed, but he/she should be honest and give the sincere advice [5]. The matter may be more complicated when the patient relegates the decision making to the doctor saying: “Look I have trust in you, and whatever you decide I will accept.” The physician should be tactful and try to explain the situation and give information to the patient and/or his family, and reach with them the course to be taken. As far as he can make it, the physician should explain that the decision should be in the hands of the patient (plus his family). He might help by giving all the required data, and even may give his personal advice.
In cases where the patient does not want to know the diagnosis, the physician should discuss the condition fully with the family, and let them try to persuade the patient, at least to take part in the decision-making.
The question of confidentiality will crop up here, if the family gets to know the details of the ailment and its management. If the patient agrees to divulge the intricacies of his medical condition to the family or proxy, then there is no breaking of confidentiality, as it is done after getting the consent of the patient himself.
Even in the West, there are many patients who do not want to know about their medical condition, or take part in decision-making. Dr. Schneider [5] said “While the patients largely wish to be informed about their medical circumstances, a substantial number of them (especially the elderly and the very sick) do not want to make their own medical decisions or perhaps even to participate in those decisions in any significant way.”
Beauchamp and Childress [1] defended the right of the patients to choose whatever they find appropriate. They can delegate the decision making to a member of the family, a proxy or even to the treating physician himself.
In one study, researchers (UCLA) examined the different attitudes of 800 elderly subjects (65 years or older) from different backgrounds toward [1] disclosure of diagnosis and prognosis of a terminal illness [2] decision making at the end of life [6]. Only 47 % of Korean Americans agreed to be told of metastatic cancer, while 87 % of European Americans agreed to know the diagnosis and a similar figure of African Americans (88 %).
Similarly, in questions about decision of life support only a minority of Korean American and Mexican Americans agreed to decision-making in these matters while 60–65 % of European and Afro Americans agreed to decision-making in this terminal illness [6].
The investigators in this study stress that “belief in the ideal of patient autonomy is far from universal.” A family centered model places higher value on the harmonious functioning of the family than on the autonomy of its members. Even in cases where family relations are strained, the family becomes furious if one of its members enters a hospital without prior consultation with family elders.
The physicians should ask their patients if they wish to receive information and make decisions, or if they prefer that their families handle such matters. The choice is rightly the patient’s [1].
Traditional Navajo (Red Indians of USA) regard the discussion of negative information of a disease with the patient as potentially harmful. Any talk of the potential complications would result in the appearance of these complications, whether true or imagined [7].
A Navajo nurse reported that her father refused a bypass operation, as the cardiac surgeon explained so many complications of the surgical procedure [7]. A similar situation is found in many Arab countries. The physicians and surgeons usually give minimum information of the complications to the patient, if the patient is not accepting any such information, and would give more information to the family. The PBUH ordered the physician and visitors of the patient to give him hope, as it will improve his psychological condition, which may help in cure. Even if it did not help it will do no harm.
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