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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:

  1. 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).

  2. 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:

  1. 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.

  2. 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.

  3. c.

    In immunization schemes decided by the government to protect children and in cases of infectious diseases the treatment, if available becomes imperative.

  4. 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.

Many physicians in Arab and Muslim countries try to implement the Western standards of medical ethics; and especially in the field of autonomy, face many difficulties with at least some of their patients especially the elderly and those suffering from serious diseases. They have to adopt a softer attitude and give more hope to the patients [8], or at least abide by the patient’s wishes if they do not want any further information. It may be more suitable to discuss the details with a responsible person/persons of the family. The norms are changing rapidly and with expansion of education and globalization, the Western attitudes toward autonomy, privacy, and personal liberty are going to be more acceptable especially to the young educated generation.

“There is a fundamental obligation to ensure that the patients have the right to choose, as well as the right to accept or to decline information. Forced information, forced choice and evasive disclosures are inconsistent with this obligation” as Beauchamp and Childress say [1].

The health providers should inquire whether their patients wish to receive information and make the decision or whether they would prefer to delegate these matters to certain members of their family. These wishes should be respected; and in fact represent respect of autonomy.

Therapeutic Privilege

The Hippocratic Oath gives the physician the privilege to decide whether to tell the patient of the diagnosis, prognosis or the side effects or conceal whatever he feels is going to harm the patient. The physician should tell the patient all the relevant data that will help the patient in his malady or ward off certain side effects. If the physician prescribed a drug that may cause drowsiness (e.g., diphenylhydantoin for epilepsy, diazepam anxiolytic drug or antiallergy drug) he should warn the patient not to drive a car or operate dangerous equipment until he is sure he knows how he responds to this drug.

This is engrained in beneficence and nonmaleficence, which is cornerstone of Hippocratic ethics.

The therapeutic privilege is when holding certain information that the physician believes would be harmful or upsetting to the patient. If the cancer patient knows that radiotherapy may cause severe burns, he or she may refuse the required treatment. Many patients refuse essential management or operative intervention, when they are told of the serious side effects that may occasionally occur. In such a case, the physician or surgeon may not divulge the information that he knows will disturb the patient and cause him to refuse an important mode of therapy.

The therapeutic privilege came into question in the USA in the 1960s, when litigations against physicians went to court. A lady Irma Natanson suffering from breast cancer needed radiation after mastectomy. The radiation caused severe burns and she sued her doctor, as she was not told about this side effect (the signature of consent was considered invalid as she was not informed). Her doctor defended himself that he withheld the information, as he felt, she would not agree to the required treatment , i.e., radiotherapy, if she knew about the possibility of severe burns. This is called Therapeutic Privilege [9].

The Judge Schroeder declared that “Anglo American law starts with the premise of a thorough going self- determination. It follows that each man is considered the master of his own body, and he may, if he be of sound mind, expressly prohibit the performance of life saving surgery or other medical treatment” [9].

In the 1970s the informed consent became well entrenched in Bioethics and any deviation needed the consent of the patient himself to waiver his responsibility and delegate it to others.

The problem was what would be considered an informed consent, and how much to tell. “Telling the patient everything about a procedure is an impossible task. All that is being called for is adequate information” [9]. However, the limits of adequate information may differ from case to case, and from culture to culture. A young man (19 years) suffering from ruptured disc in his backbone had laminectomy. Afterwards he fell from bed, which resulted in paraplegia (lower body paralysis). He sued his doctor, as he did not warn him about the seriousness of falling out of bed. The doctor’s answer was that everybody (adult competent) should be careful not to fall out of bed; and this incident is so rare, that he did not mention it. Doctors are not expected to tell about the very rare complications [9].

In Islamic jurisprudence the consent of the patient is essential. When Prophet Muhammad, in his last illness, asked his wives not to force medicine if he gets stuporosed, through the side of his mouth, they did., When he came around, he ordered them to take the same medicine in the same way given to him. Each one of them did the same with the other [10]. This illustrates that the consent of the patient is essential, even if his condition is serious, and even if his refusal is by his hand [10]. All the books of Islamic jurisprudence for the last 1,000 years agree that in order to practice medicine (or surgery) there are two conditions [1] the physician is qualified and has been given permission to practice medicine (or surgery) by the responsible authority [2] he should obtain the consent of the patient if he is a competent adult [11]. If he is a minor or incompetent then the consent of his guardian should be obtained (unless in emergency).

For veterinary medicine, the veterinary physician should obtain the consent of the owner of the cattle (camels, cows, sheep, or goats). Otherwise, he may be liable and pay the compensation of any harm.

If the physician is not known of practicing medicine and he has not obtained permission to practice, then he is liable to another punishment (may be corporal or incarceration); and he is prevented from practicing medicine until he gets the required license [12].

The Ministry of Health of Saudi Arabia distributed regulations to all health providers in 1404H (1984 CE) ordering physicians not to practice any mode of treatment unless there is consent from the patient, if he is competent, or his representative, if he is incompetent, except in emergency cases. There is no difference between male or female in this respect. The physician/surgeon should give sufficient information to the patient or his/her representative, if incompetent, so that his/her consent is informed [12].

Prior to this regulation, many patients were operated on without consent. The surgeon agrees with the family to operate without informing the patient. Newspaper AlMadina Issue No. 5495 on 10/6/1402 Hijra (1982 CE) published that the surgeon in AlKhubar Hospital (Eastern Province of Saudi Arabia) operated on a competent adult patient without his consent or even knowing that he is to be operated. The surgeon collaborated with the family to operate on the patient, as he was afraid of all surgical interventions, without his knowledge. The newspaper commended this approach, for which one of us (M. Albar) responded by writing a long letter, which was published condemning such act, and that it is illegal and the patient can sue the surgeon, even if the operation was successful.

Even after the circular of Ministry of Health was published, many hospitals continued to ask the patients just to sign that he/she agrees to have an operation and anesthesia, without even mentioning the type of anesthesia or the name of the operation, let alone getting an informed consent.

Fortunately, this unethical practice is disappearing. In China, at the time of the Cultural Revolution (Mao Tse Tong era) 100 million Chinese men and women were sterilized without any consent. Indira Ghandi of India in the seventies of twentieth century sterilized 11 million men and women by force.

In Egypt, at the time of President Jamal Abdul Naser, the doctors of government hospitals were ordered to insert I.U.D.s (intrauterine devices) whenever they examine the female genital system, without even informing the lady, if that lady has a certain number of children. This was witnessed by one of us (M. Albar) who was working as an intern in Cairo Hospitals in 1964–1965.

Such horrendous actions were not uncommon in third world countries, which were unfortunately supported by Western Governments in order to curb explosion of World population. China was encouraged since early sixties to adopt one child policy. If a woman was pregnant for the second time, then she had to abort by force of law.

Female infanticide became rampant both in China and India; and when ultrasound became available late pregnancy abortion was carried on whenever the pregnancy was assured of being female, which is still happening up to this moment (2014).

The informed consent and human rights are limited to the democratic countries of the West, but may be absent in many third world countries. If a country is lacking the essential food and clean water for a major sector of its population, then any talk of informed consent, autonomy, and human rights is superfluous, unless the basic needs of food, clean water, shelter, and basic rule of law is first established.

The Change of Attitude of the Physicians in Telling Bad News in USA [9]

Donald Oken published a study in 1961, in which he asked US physicians what was their policy of telling the truth to terminally ill cancer patients. 84 % said it was their policy not to tell the patients the true diagnosis, in order not to cause more distress to their suffering patients.

However, in the late 1960s and early 1970s, the community was changed. Respect of persons emerged as a dominant principle in medical ethics—the time of Roe versus Wade involving abortion (1973), the Natanson Case involving informed consent (1960), and the Karen Quinlan Case involving the right to refuse life support. In 1979, Dennis Novack published a study in which he replicated Oken’s question (about the policy of physicians in telling the patients the diagnosis of their terminal cancer); 98 % of the physicians declared that they tell their patients the true diagnosis of their terminal illness. The change is dramatic in less than 20 years.

The changes in the community at large, and the libertarian movement and philosophy became predominant, and respect of autonomy and human rights became an integral part of medical ethics, i.e., an ethic of respect for persons. There is also a practical consequential pragmatic need to tell the patient of his/her true diagnosis. The treatment of malignancy involves operative intervention, chemotherapy and radiotherapy, and each of these has many complications. It is impossible that any competent person would consent for these drastic procedures, unless he/she knows exactly the true diagnosis, and its seriousness.

The veracity of the physicians (telling truth) is important in the medical profession as it (a) engenders fidelity: the physician by telling the truth is actually showing fidelity to his patient, which will be reciprocated by trust of the patient and fidelity from his side (b) it engenders better relations between the physician and his or her patients. It will definitely be reflected in better management of diseases. The patient will be more attentive to the advices of the physician, e.g., losing weight, stopping smoking or drugs or alcohol, dangerous sexual practices, etc. He or she will be more amendable to suggestion of changing his/her lifestyle, or taking his antihypertensive or diabetic drugs regularly as advised and prescribed… (c) it fulfills the autonomy of the patient.

The respect of persons is interweaved with (i) autonomy; (ii) veracity; (iii) fidelity, each one of these leads and supports the other.

Limits of Autonomy

The freedom of one person cannot in anyway interfere with other people’s freedom; otherwise it will be a hegemony or dictatorship. The limit of the freedom is respect of others freedom, faith and conduct as long as it is not going to disturb the community or sects in that community.

The rights of any one are reciprocated by duties. Those who speak of woman’s rights to abortion, as the fetus is part of her body, and she, according to their point of view, can remove that part if she wishes.

There is a fallacy here; the baby in her womb is another life (formed from both parents), and it is an independent new life though still needing the mother’s placenta and womb for its growth. Killing that fetus (baby) is killing another life or at least (in its early stages) a prospect of another life.

The human being according to the Islamic dogma is created by God and he/she should obey the orders of God, as revealed by his Messengers.

God himself gave human beings a degree of autonomy to choose between things and hence he/she will be held responsible for their actions.

Van Bommel also says: “For a Muslim patient, absolute autonomy is very rare, there will be a feeling of responsibility toward God, and he or she lives in social coherence, in which influences of the relatives play their roles”. Consequently, personal choices are only accepted if they are the “right” ones [3].

A person cannot kill himself (suicide), as he is not the giver of life. It is Allah (God) who gives life and take life, and hence transgressors will be held responsible for all their actions in the final Day of Judgment.

The human being in Islamic teaching is entrusted with his body, his faculties, his youth, his fortune, and so on. He/she can only act in the way already prescribed by God. He cannot mutilate himself, or do harm to himself by smoking, taking drugs or imbibing alcohol. His sexual relations should be through marriage alone. Extra or premarital sex is not allowed. Sodomy is worse than fornication and is no less than adultery.

We, all of us, will be called to answer why did we transgress these clear teachings, even if the harm does not involve any one else except the perpetrator.

If we have traffic laws, and we have to obey these laws, even if breaking the law did not cause any harm to others or even to ourselves; then we have to obey the laws of God, of respecting life and not purposely endangering it otherwise we will be judged by Him on resurrection day.

Many philosophies and religions put limit to autonomy, e.g., Marxism, Socialism, Judaism and Christianity. Robert Veach says: “Early Judaism and Christianity had no principle of autonomy any more than any other ancient culture did…Jewish Talmudic ethics has no principle of autonomy” [9].

Bleich [13] (a well-known Jewish ethicist Rabbi) said that in the Talmudic teachings, the patient has no right to refuse treatment. Early Christianity had no principles of autonomy, and only when John Wycliffe and John Hus in the fourteenth century recognized the importance of the individual, it became more evident with appearance of Protestantism in the sixteenth century and clearly accepted as the cornerstone of ethics by the German Philosopher Immanuel Kant (1724–1804), one of the greatest philosophers of Europe and Enlightenment. His comprehensive and systematic work in the theory of knowledge, ethics, and aesthetics greatly influenced many subsequent philosophers and thinkers [14].

He refused to be ordained as a Lutheran Minister, and preferred the humble job of a private tutor and lecturer. His chief works were “critique of pure reason,” “critique of practical reason,” and “critique of judgment.” He extolled duty (deontology) and refused utilitarian consequentialist philosophy. He built his philosophy on respect of every human being; his free will (autonomy), veracity (truth telling) and keeping promise. Lying or breaking promise is not allowed whatever may be the excuse. If truth telling is going to harm an innocent person, it is not allowed in Kantian Philosophy to lie, and if we gave a promise to our children to have a picnic or travel in vacation, but one of the parents fell ill and needs our help, to Kant it is imperative to fulfill the promise especially if we gave the parents no promise of help in their need. All religions especially Judaism, Christianity, and Islam order us to be kind to our parents, and whatever they need we have to fulfill first. In Christianity, it is claimed that Jesus refused his mother (Mathew 1/18-25). In Islam, the Qur’an says that Jesus was obedient and very kind to his mother, and always praised her [15]. Islam considers being kind and good to your parents takes precedent of anything else. You have to obey them except when they order you to worship idols or to transgress; only then you should not obey them. Nevertheless, continue to be kind and generous with them [16].

Deontologist (Kantian Philosophy) hold that some choices cannot be justified by their effect no matter how morally good their consequences are. The right has priority over good, no matter the amount of good it will produce. It also stresses the importance of good intention in order that the act be considered moral. Both Christianity (Aquinos: Summa Theologica) and Islam stress the importance of good intention and nonreprehensible means.

In Islamic teachings, though the intention is of paramount importance (niyah), the means to fulfill such an intention bear the same value. However, Islamic teachings look to the consequences and if we can predict an evil or bad result then that action should not be taken.

Lying is one of the worse sins in Islam, but if lying is going to save an innocent person (e.g., a Jew hiding in your house followed by the Nazi as happened in Morocco during World War II), lying in this case can become a virtue instead of being a vice. The categorical philosophy of Kant will never accept such attitude, as principles should be kept whatever may be the consequences.

Letting a patient die by not putting a ventilator and doing cardiopulmonary resuscitation (CPR) is not tantamount to killing. In fact, physicians order DNR, in terminally ill patients where CPR and putting a ventilator will only increase the suffering of the patient and his family, and is considered futile.

The Fatwa No. 12086 dated 30/6/1409 (1989) of the High Council of Scholars and Ifta’a (issuing religious decisions) of Saudi Arabia, Riyadh, allowed “Do Not Resuscitate Policy” if three competent physicians decided it, as it is futile. The decision of these specialists and competent physicians of integrity should be respected [17].

The subject should be discussed with the patient prior to his final illness or if there is advanced directives. It should be discussed with the family (usually there is no advanced directive in third world countries).

Mercy killing (euthanasia) is not allowed even if the patient insistently request it and his family agree to it. Killing is a crime whatever its name (mercy killing) and is not allowed in Islam and by the law. The perpetrator will be punished; the type of punishment may be reduced from capital punishment to imprisonment, as the perpetrator did it on demand of the person himself. Even if the law exonerates him from retribution, he is morally wrong and will be judged by God on the final Day of Judgment.

The Deontological Kantian Categorical Philosophy is rights based. They proscribe using of another’s body, labor, and talent without consent. Several philosophers of this school, e.g., Robert Nozick, Bernard Williams, and Thomas Nagel have developed the doctrine regardless of consequences [18]. The heinous examples of biomedical research carried out in USA and elsewhere, without consent (let alone informed consent) which exposed those researched to serious harm and sometimes death, should be considered as nefarious crimes that should never be condoned or allowed. The utilitarian consequential philosophy allowed such horrendous experiments and research, on the presumption that great good would occur to whole communities, was proved to be a fallacy. Even if there are good consequences; that will not in any way allow such nefarious heinous so called biomedical research, which ended in killing and harming many. Deontological constraints cannot justify serious harm done to few to ward off greater harm to many.

The deontologists will abide by the moral law of autonomy giving those to be researched full information with all the bad consequences, and letting them decide freely without any coercion or incitement to accept or refute participation in such research. It also abides by the moral law of nonmaleficence.

The researcher or the physicians treating patients should never do harm to patients or those to be researched intentionally. However, if research or treatment ended in unintentional harm (not due to negligence) then the question of compensation will be raised. If however, there was an intention to harm; or even harm due to blatant negligence then the case should be under criminal and not civil law.

Kantian philosophy is important in changing the Western countries to the importance of autonomy, veracity, fidelity, and human rights. It has a great moral effect in improving the standards of medical management and bioethical research.