A. CONCEPT OF AUTONOMY
An autonomous person makes autonomous decisions. Autonomy is the opposite of authority. It is a restricted area about a person in which he has full capacity to make and carry out autonomous decisions. Autonomous decisions must be intentional, made with full understanding, and without external controlling influences. The principle of autonomy needs continuous emphasis because in practice physicians and other caregivers may not respect the wishes of autonomous persons.
Individual autonomy has 2 components: liberty and capacity. Liberty implies independence from any controlling external pressures that can influence or sway the decision. Drug addicts are for example not able to make autonomous choices. Capacity is the intellectual and physical ability to reach a decision. The basis of autonomy is legal competence, ahliyyat. Legal competence involves both liberty and capacity.
Autonomy implies free choice and liberty to make choices. Autonomy is relative and not absolute. There are limitations to the autonomy. The physician is not obliged to follow patient wishes if they involve doing illicit, illegal, or self-destructive acts.
Autonomy is derived from the principle of the Law on preservation of life. Among all players in a medical scenario it is the individual patient who is best able to make decisions in the best interests of his or her life. Others may have other personal considerations that may bias their decision-making. It is for this reason that all decisions must be referred to the patient. No medical procedures can be carried out without informed consent except in cases of legal incompetence in which case the Law provides for other persons to make decisions on behalf of the incompetent patient.
Autonomy is lost in cases of legal incompetence. It is lost temporarily in cases of intermittent incompetence. The incompetence must be specific for the medical condition. For example a person who is incompetent in handling his financial affairs may be competent in making decisions about his medical treatment. The threshold for measuring incompetence varies according to the procedure anticipated and the level of risk involved. Low-risk procedures do not require a very high level of competence. Standards of assessing competence must be developed. There are some operational measures of competence such as the dementia rating scale.
B. INFORMED CONSENT
Informed consent is autonomous authorization of medical procedures. Informed consent is required to fulfill the principle of autonomy. The patient has a right to make an informed consent regarding choice of the physician to treat him and choice of treatment. Consent can be described as expressed, informed, implicit, presumed, or tacit consent. Autonomous decisions may be made in advance to cover anticipated incompetence in the future. Autonomous decisions can also be made for he period after death for example regarding autopsy, organ donation, and use of body tissues for research.
Informed consent has the following basic elements: disclosure by the physician, understanding by the patient, voluntariness of the decision, legal competence of the patient, recommendation of the physician on the best course of action, decision by the patient, and authorization to carry out the procedures.
Full disclosure of all relevant facts must be made in a way that the patient understands before he is asked to make a decision or make a choice. Each institution should have written policies on the standards of what is reasonable disclosure. The standard of disclosure may be based on a professional standard, a reasonable person standard, or a subjective standard that takes into consideration the type of information that each individual requires. It is obviously impossible to make a full disclosure of all scientific information that the patient cannot grasp.
Intentional non-disclosure is necessary in the following 4 situations. It is impossible to make full disclosures in an emergency situation that calls for urgent and immediate intervention. Non-disclosure is allowed when the information concerned will aggravate depression or lead to mental or psychological stress that could interfere with the treatment. The patient in self-protection may request waiver of full disclosure because of fear of being upset. Disclosure of the treatment or placebo group in a clinical trial will unmask the double blinding and lead to biased results.
Patient understanding must be based on adequate explanation of the technical information using everyday language. This may be complicated by false beliefs of the patient that could result into distorted understanding. Some patients may refuse to accept the information disclosed as correct. The method of framing the information may affect the understanding.
Care must be taken to make sure that any consent given is voluntary. Consent is considered voluntary if there is no psychological compulsion or external constraints. There are three forms of influence on the patient: coercion, persuasion, and manipulation.
The methods of obtaining informed consent may differ from institution to institution and follow local laws and regulations. There is an implicit consent to treatment when a patient voluntarily enters a hospital or a physician’s office. Such general consent is deemed to have been given when the patient signs a statement on admission agreeing to all procedures that will be carried out. In cases of emergencies when the patient is not able to give informed consent, the legal principle of necessity, dharurat, is used to justify medical intervention for the sake of saving life. It is legal to proceed with serious non-emergency procedures on the basis of predicted future consent.
C. CHOICE OF PHYSICIAN:
As long as patients are conscious and are in full control of their mental faculties, they should be consulted about choice of physicians. Minors, unconscious patients, and those who have lost legal competence cannot choose physicians. Their legal representative, waliy, will have to make the decisions. The caregiver must realize that choice of a physician is a continuing resolution and must make sure that there has been no change of mind on the part of the patient or the legal guardian. Permission to treat must be sought at every visit though not necessarily in a formal way. It is illegal to treat a patient against their will unless provided for otherwise by the Law in defined exceptional circumstances. As guidance to the patient in physician selection, the following order of priority is followed: Muslim of the same gender, non-Muslim of the same gender, and Muslim of the opposite gender.
D. CHOICE OF TREATMENT
Under informed consent the patient makes an autonomous authorization of medical intervention. The patient can withdraw this authorization at any time. The sunnah has given us guidance about forced feeding and forced treatment (KS 505: Sunan al Tirmidhi Kitaab al Tibb Chapter 3). The patient is fed the food he likes, idha ishtaha mariidh ahadukum shayi a fa liyuti’imahu (KS505). The patient retains freedom to accept treatment or to reject it. The patient cannot be forced to take any medication or undergoes any medical procedures. Treatment with new/experimental drugs or procedures requires informed consent. If the patient has lost legal capacity, ahliyat, by being unconscious or by losing mental capacity, the guardian, waliy, will take binding decisions on behalf of the patient. Illogical refusal of treatment or food could be grounds for finding a patient intellectually and legally incompetent making it necessary for the guardian to make the necessary decisions. Some situations of refusal of treatment are not issues of freedom of choice but have criminal implications. For example a patient with pulmonary tuberculosis who refuses treatment is committing the crime of endangering the lives of other members of the community. A parent who refuses immunization of a child is endangering the health of that child and other children in the community.
E. CONSENT BY PROXY
Substitute decision maker: A living patient mat delegate authority for decisions or may give rules for reaching a decision. Living wills or advance directives can be made in anticipation of future incompetence.
Professor Omar Hasan Kasule