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The proclaimed objective of the Terminally Ill Law, 2005 (hereafter “the Law”) is to resolve the manner of treating terminally ill patients, balancing the value of the sanctity of life and society with the autonomic will of the patient, as well as the importance that should be attributed to his/her quality of life and actual existence. In its totality, the Law strives to reflect a measure of appropriate balance between both parts of this complex equation. There is no doubt that the Law is innovative, and although it does not propose a solution for all terminally ill patients, it is an important move in ascertaining the rules of ‘permitted’ and ‘forbidden’ in the fields of medical performance and medical morality.
It might be worth first mentioning that the Law does not legitimize “euthanasia” and even specifically forbids all active deeds intended to hasten a patient’s death or to assist him/her to commit suicide. However, the Law does permit doctors to withhold treatment for his/her terminal illness from the terminally ill patient, taking into consideration his/her will and the extent of his/her suffering, in certain conditions determined by the instructions in the Law, and based on the instructions of the “responsible physician” as defined by the Law.
Who is A “Terminally Ill” Patient?
A terminally ill patient, as defined by the Law, is a patient diagnosed by the responsible physician” to be suffering from an incurable medical problem and whose life span – even if treated medically – is not longer than six months. Without a medical decision, this Law does not apply. A special case of a terminally ill patient is “a patient in the final stage”, defined by the Law as a terminally ill patient, for whom the responsible physician has determined that several of his/her vital organs have collapsed and that his/her life span – even if given medical treatment – is not longer than two weeks.
The legislator’s choice of the term “incurable medical problem” (as opposed to “incurable medical illness”) was also intended to cover cases in which the direct cause for the patient’s terminal condition is a traffic accident, or any other situation that is not defined as an “illness”. The word “terminal” is a more flexible explanation of the term “terminally ill”, which is a term that was commonly accepted in the past, but which is actually the same; because the grammatical meaning of “terminally ill” is a critically ill patient whose end is near. The expression “terminally ill patient” seems to have been chosen to differentiate from “a patient in the final stage”. In any event, the responsible physician’s obligation to precisely determine the life span of a “terminally ill” patient as relatively short, (“no longer than six months”) will surely not make it easier for doctors to decide whether the Law applies to certain patients. The same, and to an even greater extent, relates to the application of the Law’s special instructions regarding a patient “in the final stage”, which depends on allocating his/her life span to a period no longer than two weeks.
Who is “A Responsible Physician”?
Only a “responsible physician” is authorized to determine whether a patient is “terminally ill” or that he/she is in the “final stage”.
A responsible physician is one of the following: 1. Head of a department or head of a division in a medical institution where the patient is being treated, or a doctor with a specialization degree, who has been appointed by the head of the medical institution to be responsible for patients treated in the institution. 2. A district physician from the healthcare fund, or a doctor appointed by him/her, in the matter of patients treated in the community. 3. All the above doctors relating to patients treated neither in a medical institution nor in the framework of a healthcare fund. However, a responsible physician is authorized to determine that a patient is “terminally ill” or in the “final stage” only after consulting with the specialist doctors who are treating the patient and, if possible, also with his/her personal physician, who is closely acquainted with the patient and familiar with his/her will regarding his/her medical treatment. The patient’s personal physician might be his/her family doctor, or a doctor in the medical institution (or center) where the patient has been treated in the past.
Conditions under the Law for Withholding Treatment
Determining that a patient is terminally ill, or that he/she is in the final stage, is insufficient justification for withholding medical treatment. The basic assumption of the Law is not that a patient whose illness causes him/her great suffering, and who is aware that his/her end is near, wishes to hasten his/her death. The basic assumption of the Law is just the opposite. The Law determines that every individual – the terminally ill and suffering patient included – wishes to continue living, and as long as it has not been proved beyond any reasonable doubt that the patient indeed does not wish for his/her life to be extended, he/she must continue receiving treatment. An expression of the importance the Law places on honoring the value of the sanctity of life can be seen in the instruction that determines that if the terminally ill patient expresses the will for his/her life to be extended, and requests to be given uncommon medical treatment, then – even if it is the responsible physician’s opinion that circumstances do not justify such treatment – the physician is obligated, as far as possible within conventional conditions and terms, to honor the patient’s will.
Withholding treatment depends, first and foremost, on the existence of sufficient evidence that the patient does not wish for his/her life to be extended. In the matter of the terminally ill patient who does not want treatment that will extend his/her life, the Law distinguishes between a “competent” and an “incompetent” patient. A competent patient is a patient over 17 years of age, who has not been declared incompetent and who is able to express his/her will. A competent patient can object to the Law regarding his/her will to continue living by explicitly expressing the wish that his/her life not be extended. Furthermore, the Law determines that an individual over 17 years of age, and who has not been declared incompetent, is socially, mentally and emotionally competent to make decisions regarding his/her medical treatment with understanding, deliberation and of free will. This power can be refuted only by the reasoned and recorded medical decision of the responsible physician; and this, too, after consulting with the doctors treating the patient and with relevant doctors or specialists, and if possible, also with the patient’s personal physician.
An incompetent patient is a patient aged 17 years who, when diagnosed as terminally ill, is unable to express his/her desire not to receive medical treatment that will extend his/her life; whether because he/she is unconscious, or not fully conscious, or because he/she does not possess the physical ability to talk. The decision regarding medication that will extend the life of such a patient lies in the hands of the responsible physician, who will draw conclusions from one of the following:
- Prior medical directives given by the patient, in accordance with the Law, on condition these directives are still valid (i.e., they were given during the past five years, or – if the patient limited their validity – a shorter period which has not yet elapsed.
- The decision of an individual who holds power of attorney for the patient – when the patient appointed power of attorney for this matter – and the power of attorney abides by the conditions of the Law.
- The decision of an institutional committee or the “National Committee” which is to be appointed by the Minister of Health in accordance with instructions of the Law (this article will relate to these committees later).
However, even if prior directives by the incompetent patient do not exist, the responsible physician is entitled to determine that it is the patient’s will that his/her life not be extended, taking into consideration a specific declaration by a close individual that the patient does not wish to continue living, or taking into consideration the position of the patient’s guardian, who is an individual close to the patient, that the patient does not wish for his/her life to be extended. “A close person” is an individual considered by the responsible physician, and by the instructions which the Minister of Health will determine in the regulations of the Law, to have familial or emotional ties to the terminally ill patient, who is devoted to him/her, and is also very familiar with him/her, through a continuous and lengthy connection between them in the period before continuous treatment began, or during the treatment.
Distinguishing between Types of Treatment
Adhering to its position that doctors should not be permitted to perform active interventions with the objective of helping the terminally ill patient end his/her life, the Law forbids the cessation of “continuous medical care” that has already been initiated. Continuous care is treatment that is administered continuously, and can therefore not be stopped (such as artificial respiration), because the cessation of continuous treatment is perceived as an active intervention that might lead to the patient’s death. However, the Law permits a doctor to refrain from administering “cyclic medical treatment” to a terminally ill patient, that is – treatment given in cycles (such as dialysis, radiation or chemotherapy). Here, the authorized physician, in appropriate situations, can refrain from administering treatment, either from the start, or by not administering a new cycle.
As a particularly exceptional move, the Law permits planning ahead, with the appropriate technological measures, for treatment that should have been given to the patient continuously to be administered cyclically. Thus, for example, the law permits allocating in advance, with the aid of a “Sabbath timer”, the duration of the activation of a respirator so as to enable the physicians to decide, in a timely manner, whether it should be reactivated at the end of the allocated time.
The Law includes instructions that distinguish between types of treatment that should not – or might not – be given in certain conditions, and other treatments. The will of a competent terminally ill patient who does not wish his/her life to be extended, should be honored, and treatment should be withheld. At the same time, those caring for such a patient must make a reasonable effort to convince him/her to accept oxygen, nourishment and fluids, even by artificial means, as well as palliative medication, i.e., treatment intended to relieve his/her pain and suffering. They should also try to persuade the patient to accept “accompanying treatment”, which is defined as medical treatment for other illnesses he/she might have and which are not necessarily connected with his/her incurable medical problem.
Medical treatment for an incurable medical problem should be withheld from an incompetent terminally ill patient in considerable pain, for whom it has been determined according to the Law that he/she does not wish his/her life to be extended. However, neither palliative treatment, food nor water should be withheld from such a patient, nor accompanying treatment. This, even if it has been made clear that he/she has expressed the desire to refrain from receiving such treatment as well. Thus, the Law distinguishes between a competent patient, to whom the caregivers’ obligation is expressed only in the effort to convince him/her to accept the treatment, and between an incompetent patient, to whom the caregivers are obligated to administer palliative care, food, water and accompanying treatment. With regard to an incompetent patient in “the final stage”, and for whom it has been decided that he/she does not wish to extend his/her life, the Law instructs withholding all medical treatment, including palliative and accompanying treatment, but states that fluids should not be withheld unless the responsible physician has determined that administering fluids will cause him/her suffering or harm.
To conclude the first part of this article, although the Law does not provide a solution for the problems of all incurable patients, it contains an anchor for the concept that the right to die with dignity is part of the right to live with dignity. For those who fear living without dignity at the end of their days, the Law provides – even in its limited form – an important message.
Minors and Individuals Under Protection
The Law includes special instructions to cover the medical treatment of a terminally ill patient who is a minor or under protection. “Minor”, as specified in the Law, is an individual under 17 years of age. With regard to a minor patient who has been diagnosed as terminally ill, the Law instructs that a parent is authorized to represent him/her, both in the matter of extending his/her life, as well as in the matter of refraining from extending his/her life. The individual appointed as guardian of the minor, who is considered to be an individual close to the patient, is also entitled to express his/her opinion. A “close person”, as specified in the Law, is somebody with familial or emotional ties to the patient, and who is well acquainted with him/her based on a continuous and lengthy connection between them in the period prior to initiation of the medical treatment or during the treatment. When there are neither parents, nor a guardian who is also a close person, the issue of the minor will be determined by an “institutional committee”. At the same time, it should be noted that whether the minor has parents or a guardian or not, the minor him/herself is entitled to participate in making the decision on his/her own behalf if he/she is aware of his/her condition and wishes to express his/her opinion, on condition the responsible physician has determined that the minor’s mental and emotional ability and maturity permit him/her to do so. On this condition, and if the responsible physician is convinced that this will not harm the minor’s physical or emotional health, the responsible physician is obliged to provide the minor with information regarding his/her condition. However, before making one of the above decisions regarding a terminally ill minor, the responsible physician is obligated to consult with the minor’s parents, or with his/her guardian, with those caring for him/her, with the relevant doctors or experts, and as far as possible, also with the terminally ill minor’s personal physician.
If a terminally ill minor has requested that his/her life be extended, the doctors will act upon his/her will. However, if a terminally ill minor who is 15 years old has expressed the will to refrain from having his/her life extended, the institutional committee will make the final decision. The committee is obliged to hear the minor’s opinion as well, and if convinced this is to his/her benefit, the committee is entitled to instruct against extending his/her life. The matter of the minor will also be determined by the institutional committee in case of differences of opinion between the minor and his/her parents, or between them and the responsible physician.
In the matter of patients under protection: a patient under protection is an individual who, because of mental or emotional limitations, is unable to take care of his/her routine needs. This relates only to an individual who, before being diagnosed as terminally ill, also suffered from the above limitations, and for whom neither valid prior medical instructions exist, nor the power of attorney of another individual to represent him/her. The law regarding a patient under protection is similar to the law applying to a minor, with the necessary changes dictated by the situation. In other words, if a patient under protection has expressed the will that his/her life be extended, his/her will should be respected, but if he/she has requested to refrain from having his/her life extended, this issue will be determined by the institutional committee after hearing all those related to the matter, including that of the individual under protection, and based on what the committee deems to be in his/her benefit.
The law contains a long list of instructions that must be executed for its proper enactment, among others, the establishment of institutional committees and the national committee. The composition of a regional committee should include three specialist physicians in one of the fields specified in the law(none of whom are treating the patient directly), as well as a specialist psychiatrist, a registered nurse, a social worker or clinical psychologist, an academician specializing in philosophy or ethics, a lawyer eligible to be appointed judge in the district court, as well as a religious scholar (preferably of the patient’s faith). The composition of the national committee should include four specialist physicians who are unit directors, department directors or hospital directors, four senior registered nurses, four social workers or clinical psychologists holding senior positions, four senior academicians in the field of philosophy or ethics, four senior lawyers eligible to be appointed district court judges, and four religious scholars. The institutional committees should be appointed by directors of the medical institutions, after consulting with the head of the international committee and with authorization from the Director General of the Ministry of Health, whereas the authority to appoint members of the national committee is that of the Director General.
The institutional committees are to decide in the matter of administering or withholding treatment from patients diagnosed as terminally ill, whose will cannot be clarified (with regard to incompetent patients, minors, or individuals under protection), either because there is no source for reference (such as prior medical instructions, power of attorney, a parent or guardian), or due to a controversy between the various relevant factors. A matter requiring clarification will first be brought before a regional committee, but in the second stage might be brought before the national committee for arbitration. Transferring the decision to these committees will release the courts from the need to deliberate a considerable number of cases of terminally ill patients who require the decision of a judge according to the existing law.
Each of the following is entitled to turn to a regional committee: A patient who had been diagnosed (or not) as terminally ill; an individual holding power of attorney for such a patient; a guardian or individual who is close to an incompetent patient; each member of the medical staff in the institution where the patient is being treated; the patient’s personal physician; a social worker. Anybody entitled to turn to a regional committee is entitled to appeal the decision before the national committee. However, a matter determined by a regional committee might also be brought before the national committee for arbitration in one of the following cases: at the request of at least one member of the regional committee due to controversy between members of the committee; at the request of the regional committee, whether because the committee could not reach a decision in the relevant case or because, in the opinion of the regional committee, the case is exceptional, and of principal importance.
Proof of the Law Lies in its Application
The Law has left a large number of issues requiring resolution to be decided by the Ministry of Health in the framework of regulations the Ministry was entrusted to devise before the Law was initiated. Among these: methods of appointing the national committee and the institutional committees and their working arrangements; details that are to be documented in medical files; instructions about changing or canceling prior medical instructions, or a power of attorney that was appointed by the patient in the past; obligations of medical documentation and reports by the responsible physicians; the obligation of the medical institutions to possess technological means that will enable the planning of respiration as a cyclic treatment; and the establishment of a reservoir of prior medical instructions and its management.
Hopefully, by the time the Law comes into effect, the Ministry of Health will have completed and published the regulations necessary for its effective enactment. This is of great importance, because delayed publication of the regulations might lead to difficulties in enforcing the Law. The managing committee at Lilach has already approached various bodies in the Ministry of Health responsible for preparing the regulations, as well as the Minister himself, and intends to continue following the progress these preparations, with the objective of ensuring they are published as soon as possible.
It is important to stress that proper enforcement of the Law will not invalidate Lilach’s future activities. In the more distant future it might be wise to reassess the possibility of extending the law which, in its current form, does not resolve the distress of several incurable patients. However, in the foreseeable future Lilach must invest their efforts in two main areas.
The first is to assist those members of Lilach who have already deposited prior medical instructions (with and without power of attorney) to transfer these prior medical instructions to a database that will be established by the Ministry of Health, this after official recognition of the legal validity of those instructions that were given before enactment of the Law and not in accordance with the form attached to the Law. Needless to say, copies of these prior instructions and of power of attorney will continue to be held in the internal database at Lilach for followup and for the purpose of providing assistance to members or their relatives who might need to act upon these instructions and demand their enforcement.
The second area in which Lilach must act – and even more energetically than before – is information. The real proof of the new Law will be its successful enactment, and a certain apprehension about its success exists if only a minority of the population shows interest in utilizing the Law to their benefit and to the benefit of relatives who are incurable patients. A large portion of the population is completely unaware of the existence of the Law. Many who have heard about the Law mistakenly think that it refers to an arrangement that permits euthanasia; and due to their lack of understanding, distance themselves from such issues. The public must understand that this law does not refer to euthanasia, but rather to the awareness of every individual’s right, if he/she so desires, to influence the manner in which he/she is treated when the time comes when he/she is unable to express his/her will and to demand respect from his/her doctors.
The importance of the new law should be brought not only to the awareness of the wide public, but also to the awareness of the medical community, and Lilach must follow these activities initiated by the Ministry of Health and the Medical Organization. As explained previously, in the first part of the article, a terminally ill patient, as defined by law, is a patient who has been diagnosed by the responsible physician to be suffering from an incurable medical problem and whose life span – even if treated medically – is no longer than six months. In defining this rigid condition, which obliges the precise determination of the patient’s life expectancy, the law places a heavy burden on those who act as “responsible physicians”. However, even the doctors treating such patients are expected to free themselves from past conventions.
We must repeat and emphasize Lilach’s message, that the right to die with dignity is only part of the right to live with dignity, and that respecting this right provides a first-rate moral solution for all who fear living without dignity at the end of their days.
This article is based on a lecture delivered at the National Conference of Lilach, which took place on 24/3/06.