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Presented at a Symposium on Patient Rights held at the King Fahad Medical City Riyadh on 6th June 2011 by Dr Omar Hasan Kasule Sr. MB ChB (MUK), MPH (Harvard), DrPH (Harvard) Professor of Epidemiology and Bioethics as well as Head of Knowledge Exchange and International Collaboration Faculty of Medicine King Fahad Medical City, Professor of Epidemiology University of Malaya and University of Brunei, Chairman Institutional Review Board King Fahad Medical City.
1.0 CONCEPTS OF RIGHTS & OBLIGATIONS, mafaahiim al huquuq & wajibaat
1.1 Legal structure: Imam Sadr al Shari’at developed a structure of the Law that starts with the Law giver (haakim), and inckudes the legal ruling (hukum), the human on whom the legal ruling is applied (mahkum alaihi), and the issue or subject matter of the ruling (mahkum fiihi). Rights and Obligations are under mahkuum fiihi. Rights are classified as rights of Allah, huquuq all laah such as ‘ibadat and rights of humans, huquuq al ‘ibaad. The discussion of rights can be extended to cover rights of the community and rights of the environment and other forms of rights.
1.2 Balance and equilibrium: Under the doctrines of the moderate middle path (wasatiyyat, mizan, & i’itidaal), there is a balance between rights and obligations. A human cannot assert his rights while ignoring his obligations. In many cases the obligation limit the exercise of rights. Exercise of some rights can entail new obligations.
1.3 The fundamental rights are represented by the five Purposes of the Law, maqasid al shari'at, that have to be protected and preserved: (a) Religion, diin; (b) Life, nafs; (c) Intellect, 'aql; (d) Progeny, nasl; and (e) Property, maal. These rights are not abridged on the basis of gender, age, sanity, or disease. They are innate rights for all humans that cannot be denied because of the mental state. It is only their exercise that can be regulated by the law in deficient mental states.
1.4 Variation of rights in different situations: Besides the basic rights above, there are secondary rights that vary by age or legal competence. A fetus has rights of inheritance, nutrition, and medical care. A pre-pubertal child has right of upbringing and education. Beyond puberty the human has full rights but these vary by circumstances for example the rights of the wife are not the same as those of the husband.
1.5 The fundamental obligations: For each of the five fundamental rights mentioned there are obligations. For example the right to life also has the obligation to preserve life and not harm it except as allowed by the Law.
1.6 Variation of obligations under different conditions: The obligations of the individuals vary by legal competence. A fetus has no obligations at all to anybody. A pre-pubertal child has diminished obligations like obeying parents. Beyond puberty the human has full obligations but these also vary by circumstances. For example the husband has the obligation of financial upkeep of the family, nafaqat, even if the wife is rich.
2.0 THE CONCEPT OF LEGAL COMPETENCE, mafhuum al ahliyyat
2.1 Definition of ahliyyat: Legal competence, ahliyyat, is the basis for intention, niyyat. Niyyat is the basis of validity of human actions. Legal competence implies ability to exercise rights and fulfill obligations. It is the basis of accountability.
2.2 Conditions of legal competence, shurut al ahliyyat: Three conditions determine legal competence: (a) intellect, 'aql, assumed to start at puberty, buloogh (b) knowledge, 'ilm, or understanding of rights and obligations as well as their consequences (c) civil liberty or freedom, hurriyat, to be able to decide freely without constraints. The main condition is that of intellect. All the others depend on and support it. We need to add emotional competence or emotional maturity to these conditions though it was not considered by ancient jurists.
2.3 Privileges of the legally competent: A legally competent person has the following rights: (a) rights related to the self, huquuq al dhimmat that include his person, nafs. The rights exist from the fetal period and cannot be abrogated on account of deficiency in legal competence but their exercise can be restricted to protect the interests the incompetent. (b) Property rights, al huquuq al maaliyyat, (c) intangible rights that are not material such as honor, sharaf, and social respectability, muru’at. (d) Rights as a result of commitments: a legally competent person acquires rights as a result of commitments made to him.
2.4 Obligations of the legally competent: A legally competent adult is responsible for all his acts of commission or omission. He has obligations under the law that he has to fulfill. The obligations however vary by age and level of intellectual competence. Pre-pubertal children have diminished obligations while post pubertal adults are fully responsible.
2.5 Types of legal competence: Legal competence is of two types (a) legal competence with regard to acquisition of rights, ahliyat al wujuub (b) legal competence with regard to execution of obligations, ahliyat al adaa. Both types can be full, ahliyyat kamilat, or deficient, ahliyyat naqisat. Deficiency of competence can be permanent or temporary, general or specific.
2.6 Variation of rights and obligations by level of legal competence: Rights cannot be denied on the basis of incompetence but their exercise can be restricted. Obligations depend on the level of legal competence.
2.7 Causes of loss of competence, mawani’u al ahliyyat: voluntary causes of competence are a result of conscious human choice and include: ignorance, jahl; intoxication, sukr, and jest, hazal. Involuntary causes of loss of competence are those over which a human has no control and are: insanity, junoon; mental retardation, safah; loss of consciousness, ighma; infancy and childhood, sigar; terminal illness, maradh al mawt; forgetting, nisyaan & sahaw; absence of mind, ghaflat; sleep, nawm; menstruation, haidh; errors, khata; coercion, ikraah; and traveling, safar;
2.8 The concept of guardianship, wilayat: Legal guardianship, wilayat, is legal authority given to a guardian, wali, to make and carry out decisions regarding the person, nafs, or wealth, maal of a legally incompetent person. The guardian must himself have legal competence to qualify as a guardian. He must in addition be able to carry out the duties of guardianship. A guardian acts on behalf of a person who has deficient legal competence. The decisions of a guardian acting on behalf of another person are binding on that person. The guardian, wali, is a blood relation and if not available the state or the judge. The nearest blood relatives have guardianship with regard to issues like child upbringing and medical treatment. Any condition deemed to impair legal competence automatically voids wilayat. Wilayat ia also cancelled of the wali does not fulfill any of its conditions.
3.0 THE CONCEPT OF AUTONOMY
3.1 The concept of patient autonomy: A person does not have absolute control over the body. He is a mere custodian responsible before Allah for proper upkeep of the body. The essence of the person, the nafs, is separate from the body, jism. The nafs must respect the rights of the body, huquuq al jism. As a custodian of the body, an autonomous person makes autonomous decisions that must be intentional, made with full understanding, without external controlling influences, and in the best interests of the body.
3.2 Shari’at basis of autonomy: The principle of autonomy is derived from the shari’at purpose of intention, qa’idat al qasd. Among all players in a medical scenario it is the individual patient who has the best and purest of intentions. He or she 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.
3.3 Loss of autonomy: Autonomy is lost in cases of legal incompetence. It is lost temporarily in cases of intermittent incompetence. 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.
4.0 THE CONCEPT OF INFORMED CONSENT
4.1 Definition of informed consent: Informed consent is autonomous authorization of medical procedures. It is required to fulfill the principle of autonomy. 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 the period after death for example regarding autopsy, organ donation, and use of body tissues for research.
4.2 Elements of consent: Informed consent has the following basic elements: disclosure by the physician, understanding by the patient, voluntariness of the decision, legal competence of the patient, disclosure of alternatives, recommendation of the physician on the best course of action, decision by the patient, and authorization to carry out the procedures.
4.3 Process of consent: The process of consent involves explaining the procedure contemplated, making sure the patient understands, and offering the patient a choice. The scope of disclosure covers: test results, risks, alternatives, referrals, and prognosis. Normally consent is considered limited in scope to what was explained to the patient and he agreed. An emergency may constitute a situation of temporary incapacity in which the patient can not be asked for consent. Consent is not a single event but a continuing process
4.4 Informed refusal of treatment: Refusal to consent must be an informed refusal ie they understand what they are doing. Refusal to consent by a competent adult is normally treated as conclusive. Normally treatment should not be given even if the refusal is irrational. In such a case an application should be made to a court for permission to treat. If there is any doubt about consent it should be resolved in favor of preserving life. The right to refuse life-saving treatment is not an absolute right. It must be balanced by the state’s interest in human life especially if a minor or another incompetent person is involved.
4.5 Matters needing consent: the following require consent: (a) admission (b) choice of physician (c) history taking (d) clinical examination (e) investigations (f) choice of treatment.
5.0 CONSENT FOR THE INCOMPETENT
5.1 Children: There is a difference in consideration of consent to treatment by children: Children above 16 have some capacity to consent. Children below 16 have no capacity to consent. Competent children can consent to treatment but can not refuse treatment. In either case it is the best interests of the child that we have to consider. If the 2 parents disagree, the physician can proceed if one of the parents consents. If the child disagrees with the parent, the parental choice is followed. The court can override parental consent for some procedures on children for example sterilization. The physician can proceed to give life-saving treatment to a minor even if parents refuse to give consent. The consent for minors in therapeutic and non-therapeutic research is based only on parental choice. Consent for minor organ donors creates a special situation. Is it in the interests of the minor that the life of a close relative be saved?. The minor as a donor of a regenerative organ bone marrow is less of an ethical problem than consent for non-regenerative organs like a kidney. Minors are entitled to confidentiality but problems arise with regard to use of addictive drugs when the physician is in a dilemma to inform the parents or not to tell. There are cases in which minors have full powers of consent for example minors who are married, minors who are parents, minors who have statutory exceptions like in cases of emergency.
5.2 Mental patients: Consent to treatment by mental patients is questionable because of intellectual incompetence. Actions and pronouncements by the mentally incompetent may be ignored. Mental patients may have to be confined for their own benefit. The easiest from the ethical point of view is voluntary confinement. Sometimes admission is necessary for the purposes of assessment to make a decision whether confinement is necessary. In psychiatric emergencies patients have to be confined before procedures for informed consent are carried out. Involuntary confinement is carried out if the patient is a danger to himself or if the court orders. Special legal issues arise with the mentally sick. Carrying out research on the mentally incompetent is very questionable because they can not give consent yet medical knowledge of mental disease can not advance without research. Sterilization of young mentally incompetent women may appear reasonable because they will not be able to look after the children that they deliver but can be abused. Suicidal patients tend to refuse treatment because they want to die and they could be treated as incompetent because of their mental status. Legal protections of the incompetent include: (a) compulsory admission, detention, and treatment (b) insanity defense that a crime was committed due to defect of reason (c) defense against automatism i.e. reflex action not under conscious control. (d) Defense of intoxication is not a defense but involuntary intoxication may be a defense.
5.3 Terminal patients: Informed consent for the unconscious terminal patient is an issue because decisions have to be made on withholding or withdrawal of treatment. Patients without capacity to consent might have left an advance directive. For patients without capacity and no advance directives we may use any of the following in making a decision: subjective standards, substitutional judgment, best interest standard, or decision by the family. The issue is most complicated for patients who have never had capacity. As far as acts or omissions are concerned, there is no moral difference between withholding or withdrawing life support. Advance directives to a certain extent help resolve some but not all of the issues. Physician assisted suicide and active euthanasia are illegal. In voluntary euthanasia the patient makes a request to be killed but in this case patient autonomy can not be respected.
5.4 Obstetric emergencies: Labor and delivery are emergencies that require immediate decisions but the woman may not be competent. Forced medical intervention on behalf of the fetus can be ordered to force the mother to submit to caesarian section for the sake of a viable fetus. Birth plans can be treated as an advance directive.
6.0 CONSENT BY PROXY
6.1 Definition: A proxy is a substitute decision maker: A living patient may delegate authority for decisions or may give rules for reaching a decision. Decision by a proxy can work in two ways: (a) decide what the patient would have decided if able (b) decide in the best interests of the patient.
6.2 Consent of spouse: The law does not automatically accept consent by a spouse. A spouse can not overrule spouse’s consent or refusal of treatment
6.3 Consent by parents: Parents can consent for the incompetent as his legal guardian.
6.4 Consent by other relatives: Other relatives can make decisions on behalf of the incompetent if they qualify as legal guardians.
6.5 The device of the power of attorney can be used instead of the living will or advance directive.
7.0 ADVANCE DIRECTIVES or LIVING WILLS
A living will is part of the medical record. The living will has the following advantages: (a) reassuring the patient that terminal care will be carried out as he or she desires (b) providing guidance and legal protection and thus relieving the physicians of the burden of decision making and legal liabilities (c) relieving the family of the mental stress involved in making decisions about terminal care.
The disadvantage of a living will is that it may not anticipate all developments of the future thus limiting the options available to the physicians and the family.
8.0 CASES ON CONSENT TO TREATMENT
Case #1: A bed-ridden patient with limited movements and sensation communicated by sign language and limited speech. She could recognize letters and could write sentences by nodding when the right letter was touched. She indicated that she did not want physiotherapy, wanted to divorce her spouse, and wanted to give the family home to the kind doctor taking care of her. She wanted to disinherit her sons for not sitting around her bed and caring for her daily. She wanted to return to her home and leave the nursing home.
Case #2: A patient with a benign prostatic enlargement and mild urinary retention asked the urologist for prostatectomy. The urologist refused after examination revealed no complications and a normal PSA level. Because there was only one urologist in the government hospital, the patient sued the hospital in the High Court to force them to carry out the operation. Due to delays in scheduling a hearing the patient went overseas and had the operation done. Histological examination showed low grade prostate carcinoma confined within the prostatic capsule.
9.0 CASES ON REFUSAL OF TREATMENT
Case #1: A 40-year old theater nurse refused to accept the diagnosis of breast cancer and refused surgery. The tumor grew larger, broke through the skin and became foul smelling because of bacterial infection. The hospital director put her on unpaid leave.
Case #2: A 40-year old policeman refused surgery to drain a pyomyositis abscess. He still refused surgery after the abscess burst spontaneously. The surgeons sedated him and carried out the surgery without his consent.