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To die with dignity
0277-9536192 S5.00+0.00
Sm. Sci.Med. Vol.35,No. 4,pp.433-441,1992
Pergamon Press Ltd
Printedin Great Britain
SECTION
F
TO DIE WITH DIGNITY LEONOR SAMPAIO 330
East 38th Street, Apt. llK, New York, NY 10016, U.S.A.
Abstract-This paper examines the conundrum facing an individual with a terminal disease who wishes to end his or her life in a manner that maintains a minimum of dignity. The State’s interest versus the individual’s right to live or die is examined in its various aspects. The interference by the State supplanting the Church as the authority that interprets the boundaries between life and death, with the individual losing his voice as well as his body to the impersonality of maintaining a life not worth living, is studied, as well as the implicit dangers when the freedom to decide when and who should die is measured against the present international economic situation. The need to listen to the language of the dying as well as to their need for a ‘closure’ is approached with a view to future study. Key words-terminal
care, patient options, dying with dignity, guidelines for terminal illness
1. INTRODUCl’ION
There is a Pushkin story describing the plight of a young servant girl who, overworked and unable to sleep for days, ends up murdering a baby she cares for and falls asleep during the trial. Somehow, I find a parallel between that tragic story and the overwhelming need for rest, with the plight of the terminally ill. To die with dignity, to make a valid honourable choice one needs to have a modicum of health. Guidelines of how to die with dignity cannot be built on the individualism of John Locke or the humanitarian ideals of Jean Jacques Rousseau but rather on a sense of civil responsibility to oneself and to others. Most of all, they must be based on never losing sight of the fact that their basic ‘raison d’itre’ is not to leave the helpless to their misery. Science and economics should not be empowered to determine policy and law. Just as different societies have different ideals, the perception of what is a death with dignity has many variants. In Western Society in general the civil rights of the terminally ill are presently polarized between the private feelings of the dying and industrial economic considerations. To keep an unconscious person alive with respirators and feeding tubes when there is no hope for recovery is inhuman. Advance directives such as living wills and durable powers of attorney have been created to allow individuals to control their own fate while a cognant choice can be made. However, in many cases the directives are not suffi-’ cient to permit ending a life when it is no longer considered worth living. 433
However, we have to watch that in advocating the right to die, patients are not going to exercise what Gestalt psychology of the first half of the 20th century labeled the need for ‘closure’, in this instance the need to fill a gap revolving around a personal conflict-illness. Hans von Bayer thinks that a profound fear of emptiness accompanies human encounters with the unknown and impels us to “domesticate the darkness” [l]. For this reason to have strict legislation on death implies in itself an attempt to establish parameters for unmarked territory. It has often been noted that scientific and technological developments provide increasing opportunities for better conditions of life. However, the same developments have provided the environment in which new social problems have developed, which challenge fundamental freedoms and human rights. Sophisticated new medical and psychotherapeutic technology can constitute a threat to the physical and intellectual integrity of the individual minimizing the degree of control and choice he has over his own life. There have been disturbing reports of scientific and technological products and methods being utilized to keep individuals alive against their will or, more ominously, when their conditions of life can hardly be described as having anything to do with human life. Procedures under law-including procedures that govern access to independent and impartial bodiesare of cardinal importance to the freedom of individuals and their integrity. Although no set of principles can aspire to cover every legal, medical, social and ethical nuance, they should provide a broad frame applicable to humankind.
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The Universal Declaration of Human Rights that was proclaimed on 10 December of 1948 by the General Assembly of the United Nations states that: “All human beings are born free and equal in dignity and rights”. Our death needs a declaration that proclaims our right to exit this life in the same manner. 2. BALANCE
BETWEEN
TREATMENT
AND CHOICE
The balance between treatment and choice is a delicate one; to protect patients with incurable diseases or the terminally ill, from receiving inadequate care that might alleviate their suffering or prolong their days to protecting the same patients from overcare, and artificial and/or experimental care that will lengthen their lives when all characteristics of human life have disappeared. The debate over this question has been going on for years with Governments taking on religious overtones when they legislate that only the government has the power over life and death. It is a fine irony that western countries with a long democratic tradition deny a person-by law-that most fundamental choice; control over one’s own death. Institutional control vs private decision is becoming less ontological as world-wide new epidemics and world-wide deficiencies in health care make issues of life and death more acute. The lack of choice is defined in terms of minimum care or the embarrassment of too much care. 3. THE RIGHT TO CHOOSE
WHEN TO DIE
To think that regulations improve life is a misconception and an inaccuracy. We cannot, on the one hand, express abhorrence at the therapeutic termination of life and at the same time pretend that life constitutes an artificial link with a machine. A mentality that sanctions a limit on the individual’s freedom of choice is the same mindset that would restrict a patient’s right to choose. To tell a person that he must carry a disease to its end-when there’s no logical ending-that a person should be kept alive when he has lost control of his body is tantamount to telling a doctor what can be discussed with a patient. Paternalistic attitudes are out of date. To die with dignity should be a very private decision. In the United States, the question of the choice to die has been dealt with by many associations and societies. One of the most visible is “Concern for Dying/Society for the Right to Die” (now known as “Choice in Dying” after their recent merger) which were the originators of the Living Will. J. Patrick Hill, their Director of Education, stated that from it’s earliest days, we have viewed the dignity of a person’s death as conditioned by the range of choices available at the time of dying. For this reason, the principle of choice has informed both our educational and legal agenda. Thus, for example, in our educational work with
clinicians caring for dying patients, we have stressed the primacy of the patient’s right to make decisions. In our legal work, we have long advocated the so-called right to die. The phrase is misleading to the extent that it might suggest that as with any other right, there is with this right, the option of not using it. Despite that, it has proved to be effective and useful shorthand for public discussion. In its most expansive form, the phrase, right to die, has included active euthanasia, assisted suicide and suicide. It is no longer a crime to commit suicide in the United States, and in nine states there are no prohibitions against assisting suicide. But historically and legally, most of the controversy has been over the right to die, understood as a right to refuse or withdraw available medical treatments even though, given the patient’s underlying medical condition, refusal or withdrawal will result in death. It is as though, historically, legally and ethically, the fundamental question has been, if the treatment is available and would keep the patient alive, why would anyone want to refuse or withhold it, and die as a consequence? Our answer has been that since we arc talking about medical treatment, the individual has a right, protected by common law and constitutional law, to choose the medical circumstances under which he dies, that is, with or without aggressive medical care; with or without palliative care. As long as the individual, now a patient, is competent, the issue is relatively straightforward. It becomes much more complicated, however, when the patient is incompetent and therefore unable to make choices. In essence, this was the problem facing the N.J. Supreme Court when it decided the case of Karen Ann Quinlan in 1976. Believing correctly that her clinical condition did not abrogate her constitutionally protected right under the privacy principle to make medical choices, the court had to say how she could do that despite her medical condition. The answer, of course, is by anticipation; by executing advance medical directives that could become operative once the individual has become terminally ill and incompetent. Historically, the context out of which the Quinlan case and those that followed it operated was one in which the individual was attempting to stop unwanted aggressive medical treatment by asserting a right to die a natural death.
4. OPTIONS
AVAILABLE
TO PATIENTS
In increasing the right to choose, individuals are confronted with many possibilities including how to exercise their options. The assertion of a doctor’s right to assist a terminally ill patient to die has met with much criticism. In August 1991 the Harvard Health Letter interviewed Dr Federman, the Dean for Medical Education at Harvard, on the role of doctors in assisted suicide. Although he agreed that almost 100% of the time it would be unethical for a physician to assist a patient in the shortening of his life there are rare cases he noted in which suicide is a rational choice on the patient’s part, and one where it would not be wrong for the doctors to provide assistance. Among the factors listed as being paramount in making a decision the following were cited: (1) ensuring that neither the patient nor the physician were depressed; (2) that the patient’s judgement was not clouded by excessive medications; (3) clear diagnosis of the medical situation and the span of life that could be expected even in the best circumstances. However, Dr Federman felt that the doctor should never be obliged to assist with suicide.
To die with dignity The social and legal problems of suicide can be a joint liability both for patients as well as for physicians. Some states make suicide attempts illegal but, legally, the situation is more fraught with danger for the physician as, in most states, it can be considered a crime leading to punishment that can vary from losing a licence to going to jail [2]. However, accounts of doctors who, upon request, gave their patients barbiturates to sleep meanwhile informing them of the difference in dosage necessary to induce sleep or cause death meet with little controversy as the patient has the freedom of choosing the time and place and is not in need of assistance by the doctor. In the United States, there have been several cases involving the suspension of artificial life support systems. The case of Nancy Cruzan was the first to be heard by the U.S. Supreme Court. This case dealt with Nancy Beth Cruzan who had been in a vegetative state since an auto-accident in January 1983. Her parents tried to withdraw the life support apparatus but a trial court authorizing withdrawal was overruled in November 1988 by the Missouri Supreme Court. The ‘Hastings Center Report’ of January/February 1990 ran four articles by prominent authors analysing the problem from different points of view [3]. One of the articles, by S. M. Wolf, considered the loss of her voice as a human being, of the relationship with her body creating a world where nobody could either live or die; another article, by J. Bopp Jr, addressed the constitutional standing of the guardian, the ward’s best interests, and a quality of life exemption. The third article, by Scofield, deals with consent and the constitutional vision of preserving life and preserving liberty as well as the question of privacy. Finally, Marck Ellman discussed whether others can exercise an incapacitated patient’s right to die [3]. The Quinlan case which is the precedent to which almost all courts still refer suggested that the patient’s right to refuse medical care could be considered to be part of his or her constitutionally protected right of privacy. However, we have to watch that the Quinlan analysis is not carried too far and used in an indiscriminate manner. It has been stated that the State interest (in preserving life) weakens and the individual’s right to privacy grows as the degree of bodily invasion increases and the prognosis dims. Ultimately, there comes a point at which the individual’s rights should overcome the State’s ‘interest’ [4]. The question has been raised of “What will be the case when, for economic reasons, the State’s interest invades the individual’s right to privacy and the State decides that it is in the person’s best interests that he or she dies?’ [4, p. 3581. Ways of terminating life when it is no longer considered worth living are gaining more and more support. Dr Kevorkian, a retired Michigan pathologist, has devised a machine where the patients can
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push a button and send a lethal dose of potassium into their veins. Although Kevorkian’s methods raise a lot of issues--since many members of the general public have a profound fear that one day they might lose control of their life and be left at technology’s mercy-alternatives, such as his, represent to many a choice to be considered [5]. In this connection, one of the most recent cases dealt with by the press, was that of MS Adkins, a sufferer from Alzheimer’s disease who enlisted Dr Kevorkian’s help in order to die while still in control of her faculties [6]. Do-it-yourself books have appeared and have enjoyed wide success. The Hemlock Society book Final Exit is still on the New York Times best-sellers list in New York after many weeks [6]. The media has also used the theme of the elderly dying to promote choice as in the adaptation for television of Betty Rollin’s best seller, Hard Wish, an account of how Rollins helped her 76-year-old mother to die when she could no longer stand the pain from ovarian cancer [7]. 5. CHOICE
AND DISCRIMINATION
Life and death is transcending the field of ethical, moral and health issues and is becoming a development issue at a time when world-wide shortage of funds will make bilateral aid much harder to come by. In the industrialized part of the world there is the danger that as the economic problems worsen the powers that be might undergo an overnight ‘conversion’ and encourage the death of those who are not economically productive. The shift could start by sheltering the helpers of would be suicides and by steering the media into a subliminal propaganda campaign for suicide. Market forces or governments should not be the ones to determine when it is best to live or to die. For instance, what are the options of a person suffering from an incurable disease-albeit not fatal -who has to depend on the taxpayers’ money to stay alive? Or of another person, who does have personal insurance but the cost of treatment becomes very high? At what point does the question arise of how long (and for how much) this person should be kept alive under treatment? What would be the parameters for decision? Ethical, quality of life, or economical? Even if the decision was entirely left to the individual concerned, it is obvious that if that individual has no private means the decision is not his but is a decision of those who have the power to make the choice. The economic implications of sickness are staggering. Dealing with one sickness alone-AID-WHO’s projections see 15-20 million people infected by the end of the decade, most of them in developing countries. This will come at a time when the global economy is facing a massive recession, when the
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global banking system is in crisis and when the industrialized nations, the United States, for example, has decreased its commitment to the WHO programme and when many other industrialized countries are decreasing their domestic commitments to international health programmes [8]. In Sub-Saharan Africa, it is projected that there will be 10 million orphans by the year 2000 with 20-25% of the adult force in urban areas of Central and East Africa dead by the same date [8]. It can be argued in the current economic situation that the process of selecting medical treatments is breaking down. Discriminating against people who have terminal diseases hamper many attempts to elaborate guidelines for choice. (One such disease which has received a lot of media attention is AIDS.) The treatment of this disease involves basic legal, moral and religious principles. Its impact on health care services and the burden that caring for affected people will place on society will be enormous. International bodies have started to address this problem. For example, in 1989, the United Nations Sub-Commission on the Prevention of Discrimination and Protection of Minorities had before it a proposal for a study on human rights and AIDS to be carried out in conjunction with the World Health Organization and its global programme on AIDS (91. In a paper published by the Pan American Health Organization (PAHO) on the World Health Organizations’ approach to the subject, the following questions were asked: (1) What is the best public health approach to people with HIV infection? What rights should they have? It concludes that respect for their human rights is the humane approach. (2) Who should be treated for AIDS on a mandatory basis? The two main ethical issues in this connection were: informed consent and confidentiality. WHO also considered merits of screening certain groups such as international travelers, prisoners, high-risk groups and special occupation groups. However the ethical questions not only remained the same but are weighed down by other considerations such as: are the human and economic costs of testing programmes outweighed by the potential benefits to the tested person and to society? What are the consequences of false positive and negative results? Will health care or other socially useful activities be deprived of resources by such a testing program? Do the potential benefits justify the allocation of scarce resources? (3) Who has the right to know if someone has HIV infection or AIDS? Is there a duty to warn other people? Although WHO has strongly urged its member countries to make AIDS a reportable disease there are no guidelines as to who, if anyone, has the right to be warned of potential exposure-based on ethical and public health principles and on the
position that the physician is obliged to inform a known sex partner. (4) How can society be protected against people who irresponsibly, or even deliberately, set out to infect others? WHO’s position is that isolation and quarantine of HIV patients is not recommended, but criminal sanctions may be applied against a person who intentionally transmits or clearly intends to transmit HIV to others although such cases are extremely rare and difficult to determine [lo]. The World Health Assembly adopted a resolution at its 1988 session that stated inter alia: The forty-first World Health Assembly strongly convinced that respect for human rights and dignity of HIV-infected people and people with AIDS, and of members of population groups, is vital to the success of national AIDS prevention and control programs and of the global strategy. Urges Member States, particularly in devising and carrying out national programs for the prevention and control of HIV infection and AIDS: 1. To foster a spirit of understanding and compassion for HIV-infected people and people with AIDS through information, education, and social support programs. 2. To protect the human rights and dignity of HIVinfected people and people with AIDS and of members of population groups, and to avoid discriminatory action against and stigmatization of them in the provision of services, employment and travel. 3. To ensure the confidentiality of HIV testing and to promote the availability of confidential counseling and other support services to HIV-infected people and people with AIDS. . [8].
On 12 April 1992, the definition of People with AIDS in the United States will change. Previously, HIV-infected people were diagnosed as having AIDS only after they developed one of the sicknesses associated with AIDS. As of April, any infected person with levels below 200 will be said to have AIDS. As lab tests can vary, as well as blood levels, this measure does not seem to lead to the broadening of access to benefits but may infringe on their right to privacy. It’s one thing to collect the names of patients with disability so they can receive government assistance. It’s quite another to infringe on the rights of those who might live and work for years without getting sick [l 11. Patrick Hill, Director of Education for Concern for Dying, wrote that: People with AIDS,
but especially AIDS activists in the United States, approach the right to die issue with considerable ambiguity. Politically and socially they feel expendable. A latent Puritanism and a vocal moral majoritarianism make people with AIDS-because of the link with homosexuality and drug addiction-likely scapegoats. People with AIDS can lose their jobs and with it health insurance. When that happens their ability to afford appropriate medical care is seriously compromised. In addition, because of the inadequate infrastructure of the American health care system, people with AIDS have to rely almost exclusively on acute care institutions for their care. A more judicious use of medical resources would dictate the availability of intermediate levels of care. But because they are not there, people with AIDS are forced, inappropriately, to use resources that
To die with dignity might be better used by people with other diseases.
None of
AIDS. If anything, it undermines their claim to proper medical care. this helps the case of people
with
Many groups suffering from terminal diseases have organized themselves in order to speak out in defense of their rights as citizens and for their well-being. This movement-provided it is not taken to extremes to benefit only one group-can be a vital force for change. Systems to help people with incurable diseases should include in their decision-making representatives of organizations that deal with the matter directly. This could promote equal opportunities in distribution of public funds and involvement in the preparation of policies aimed at the welfare of such groups. Patrick Hill, of “Concern for Dying”, wrote: In a situation where people with AIDS, already viewed as a social liability, begin to be perceived as getting more sophisticated care than their clinical condition calls for, they can become politically vulnerable. It is not surprising then that they view with alarm anything that might encourage stopping treatment. In this situation, they are convinced that the right to die could be=used cynically, because of its association with the refusal of treatment, to become for them the denial of treatment. In which case, the right to die would no longer represent a principle of autonomous choice for the individual, but the justification of denying care, certainly aggressive care, and possibly hastening death. Additional encouragement would come from the fact that AIDS is presently fatal, so that any care, however sophisticated, is finally futile. In relation to the clinical care of people with AIDS, the task is to see to it that the right to die remains a principle of self-determination allowing the person with AIDS, like any other fatally ill person, to choose within reason the circumstances of his dying; to prevent the right-to-die from becoming an excuse not to treat, thus depriving the person with AIDS of any real choice and in turn preventing him from dying with dignity. 6. ADVANCE
DIRECTIVES
Public opinion favours living wills as a way of instructing doctors not to use extraordinary measures to lengthen the life of a patient for whom death is certain. The problem with detailed instructions acceptable in Court is that no human being can have the foresight to state exactly what physical conditions and what treatments would be unacceptable or define a physical condition that makes life worthy of living. Advance Directives are instruments that enable persons to make anticipatory decisions when to die. Of those, the most common are living wills and Durable Power of Attorney for Health Care. However, none of these instruments can anticipate the amount of suffering an ill person experiences and at what point the quality of life is considered to have deteriorated. Making advance directives more useful has been the topic of several articles [12] in medical ethics literature. Living wills have been found to have limited usefulness. It has been suggested that a Durable Power of Attorney (DPA) for Health Care can be more useful because it creates an agent
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who can represent the individual’s wishes, it applies to non-terminal as well as terminal conditions, it allows for reasonably free-grained decision making by someone who knows the patient’s wishes and can apply them to any given situation. It has been suggested that physicians should encourage patients to prepare specific Advance Directives [13, 141. Suggestions for making living wills more effective could include the directions on the insertion of a ‘suicide capsule’ that would only open after a certain period of time had elapsed since the insertion. This would be especially useful for patients with degenerative-memory types of disease. Any time-when they were still functioning they could choose to remove the capsules if they changed their minds and decided to remain alive no matter what the circumstances. The need for living wills has been emphasized in the United States by a new law requiring all federally funded hospitals, nursing homes and hospices to tell patients of their right to fill out a living will, specifying whether or not, if something goes wrong, they want-or not-to be kept alive [S]. Although the choice is commendable, the time they check into a hospital with all the added stress attached to it, is hardly the time when a patient should be requested to make a life and death decision. In this connection, it should be noted that only 15% of Americans had by December 1991 made out living wills. However, this new federal rule encourages them to do so [5]. 7. TERMINAL
CARE
Dying people may feel shame, fear, anger and betrayal. Their life process are breaking down and their degraded physical state puts them in a category apart. They live in a different country. Isolated from their families and relatives, they become a special race: the ill. The failure of the death choice is to address the plight of the sick from their own point. This is a minority that although easy to sympathize with for familial metaphors, cannot be empathized with because, to view death-the healthy-have to do with a coalition of varied states: the terminally ill, the carriers of incurable disease for which no cure is known, and the carrier of incurable disease that can be kept alive indefinitely if given the adequate medicine. Elizabeth Kilbler Ross’s book On Death and Dying studied the critically ill patients and evaluated their responses on what is happening to them. She examined the phases a patient goes through before final acceptance of his or her fate: denial and isolation, anger, bargaining, depression and finally acceptance [15]. Her book was the first to fully apprehend that the realization of death can only be absorbed in its intensity by the dying. Jane Griffin has analysed the switch from curative treatment to palliative treatment. The book tries to
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make it clear that it is not advocating termination of life but the decision not to prolong life under any and all circumstances which is central to the concept of ‘dying with dignity’ [16]. The premise of the book is that a substantial part of the population will end their lives in a period of terminal illness. For those who are too old or for whom no cure is possible, palliative medicine aimed at the relief of symptoms is the best course of treatment. The idea of hospice treatment for the terminally ill is gaining momentum in many places especially in Britain. Terminal care implies the need for a special kind of care that hospices are especially geared to promote. While hospice care does not deny the fact that the patient is dying, it ensures that both body and mind receive attention and care. The decision is made beforehand whether or not to provide aggressive treatment. At the hospice, treatment is determined by the patient’s personal circumstances. The main aim is to provide relief of painful symptoms [16]. Good management of pain control for these patients give them a better chance of dying with dignity. Treatment is switched to care, in accordance with how far the illness has diagnosed and what are the chances for recovery. Good treatment involves special nursing, medical and social care especially of communication between patients, family and friends [ 161. Deciding between hospice care and nursing homes should be based on whether people are in need of long-term care but still able to care of their own lives in and welcome a degree of autonomy and privacy and terminally ill patients or those in vegetative states or medically unstable who are better off in hospitallike environments. Usefulness and self-sufficiency define life. Sickness subjects to a self-transformation so great that, in the end, you are not recognizable even to yourself. Communication with the sick should not be on an incantory manner but with an intention to understand, as can be seen in Elizabeth Ktibler Ross’s book, On Death and Dying. Perhaps then we can recognize that in many instances the need for ‘closure’ is not only legitimate but also altruistic.
8.
DRAFT PROPOSALS FOR INTERNATIONAL GUIDELINES
In view of the present social-economic international situation there should be consideration given to enacting international legislation that would guarantee persons with incurable diseases and/or terminally ill the right to exercise their full consent in matters involving treatment and the choice of whether to live or to die. Standard rules on the equalization of opportunity for treatment should be enacted to avoid a situation where only the poor are without choices.
To be an effective contribution to individual rights any formulation should try to adequately reflect and accommodate legal and social systems without sacrificing the essential needs and basic rights of the individual human beings ultimately concerned. The following draft proposals are based on United Nations international legislation dealing with related matters presently in force or under study. Draft Proposal for Possible International Guidelines [17, 181for the Protection of Persons Suffering from Terminal INness Determination of terminal illness 1. A determination that a person has a terminal illness shall be made in accordance with internationally accepted medical standards. 2. A determination of terminal illness shall never be made on the basis of political, economic or social status, or membership of a cultural, racial or religious group, or any other reason not directly relevant to mental health status. 3. Family or professional conflict, or non-conformity with moral, social, cultural or political values or religious beliefs prevailing in a person’s community, shall never be a determining factor in diagnosing terminal illness. Medical examination No person shall be compelled to undergo medical examination with a view to determining whether or not he or she has a terminal illness except in accordance with a procedure authorized by domestic law. Conjdentiality
The right of confidentiality of information concerning all persons to whom these principles apply shall be respected. Role of community and culture in cases where patient chooses treatment 1. Every patient shall have the right to be treated and cared for, as far as possible, in the community in which he or she lives. 2. Where treatment takes place in a health facility, or hospice, a patient shall have the right, whenever possible, to be treated near his or her home or the home of his or her relatives or friends and shall have the right to return to the community as soon as possible. 3. Every patient shall have the right to treatment suited to his or her cultural background, and according to his or her wishes. 4. Every patient has the right to decide when to stop treatment in accordance with his or her cultural background and his or her wishes. Standards of care
1. Every patient shall have the right to receive such health and social care as is appropriate to his or her health needs, and is entitled to care and treatment
To die with dignity in accordance with the same standards as other ill persons. 2. Every patient shall be protected from harm, including unjustified medication, abuse by other patients, staff or others or other acts causing mental distress or physical discomfort. Treatment 1. Every patient shall have the right to be treated in the least restrictive environment and with the least restrictive or intrusive treatment appropriate to the patient’s health needs and the need to protect the physical safety of others. 2. The treatment and care of every patient shall be based on an individually prescribed plan, discussed with the patient, reviewed regularly, revised as necessary and provided by qualified professional staff. 3. Health care shall always be provided in accordance with applicable standards of ethics, including internationally accepted standards such as the Principles of Medical Ethics adopted by the United Nations General Assembly. 4. The treatment of every patient shall be directed towards preserving and enhancing personal autonomy. 5. Every patient is entitled to decide when to stop treatment. In cases where the patient is no longer capable of such decisions, advance directives left by the patient shall be followed. Medication 1. Medication shall meet the health needs of the patient and shall be given to a patient only for therapeutic or diagnostic purposes and shall never be administered as a punishment, or for the convenience of others. Health practitioners shall only administer medication of known or demonstrated efficacy. 2. All medication shall be prescribed by a health practitioner authorized by law and shall be recorded in the patient’s records. 3. No medication aimed at keeping the patient alive against his wishes should be administered. Consent to treatment 1. No treatment shall be given to a patient without his or her informed consent, except as provided for in paragraphs 6, 7, 8, 12 and 14. 2. Informed consent is consent obtained freely without threats or improper inducements after appropriate disclosure to the patient of adequate and understandable information in a form and language understood by the patient on: (a) The diagnostic assessment; (b) The purpose, method, likely duration and expected fit of the proposed treatment; (c) Alternative modes of treatment, including those less intrustive; and (d) Possible pain or discomfort, risks and sideeffects of the proposed treatment.
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3. A patient may request the presence of a person or persons of the patient’s choosing during the procedure for granting consent. 4. A patient has the right to refuse or stop treatment except as provided for in paragraphs 6, 7, 8, 13 and 15. The consequences of refusing or stopping treatment must be explained to the patient. 5. A patient shall never be invited or induced to waive the right to informed consent. If the patient should seek to do so, it shall be explained to the patient that the treatment cannot be given or stopped without informed consent. 6. Except as provided in paragraphs 7, 8, 12, 13, and 14, a proposed plan of treatment may be given to a patient without a patient’s informed consent if the following conditions are satisfied: (a) The patient is, at the relevant time, held as an involuntary patient: (b) An independent authority, having in its possession all relevant information, including the information specified in paragraph 2, is satisfied that, at the relevant time, the patient lacks the capacity to give or withhold informed consent to the proposed plan of treatment or, if domestic legislation so provides, that, having regard to the patient’s own safety or the safety of others, the patient unreasonably withholds such consent; (4 The independent authority is satisfied that the proposed plan of treatment is in the best interests of the patient’s health needs; and (4 The patient has not provided advance directives as regards treatment. 7. Paragraph 6 does not apply to a patient with a personal representative empowered by law to consent to treatment for the patient; but except as provided in paragraphs 11, 12, 13 and 14 treatment may be given to such a patient without his or her informed consent if the personal representative, having been given the information described in paragraph 2, consents on the patient’s behalf. 8. Except as provided in paragraphs 11, 12, 13 and 14, treatment may also be given to any patient without the patient’s informed consent if a qualified health practitioner authorized by law determines that it is urgently necessary in order to prevent immediate or imminent harm to the patient or to other persons. Such treatment shall not be prolonged beyond the period which is strictly necessary for this purpose. 9. Where any treatment is authorized without the patient’s informed consent, every effort shall nevertheless be made to inform the patient about the nature of the treatment and any possible alternatives, and to involve the patient as far as practicable in the development of the treatment plan. 10. All treatment shall be immediately recorded in the patient’s medical records, with an indication of whether involuntary or voluntary.
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11. Physical restraint or involuntary seclusion of a patient shall not be employed. 12. A major terminal medical or surgical procedure may be carried out on a person with terminal illness only where it is permitted by domestic law, where it is considered that it would best serve the health needs of the patient and where the patient gives informed consent, except that, where the patient is unable to give informed consent, the procedure shall be authorized only after independent review. 13. Clinical trials and experimental treatment shall never be carried out on any patient without informed consent. 14. In the cases specified in paragraphs 6, 7, 8, 12, 13 and 14, the patient or his or her personal representative, or any interested person, shall have the right to appeal to a judicial or other independent authority concerning any treatment given to him or her to stop treatment. Review body
1. The review body shall be a judicial or other independent and impartial body established by domestic law and functioning in accordance with procedures laid down by domestic law. It shall, in formulating its decisions, have the assistance of one or more qualified and independent health practitioners and take their advice into account, and abide by advance directives laid out by the patient, if any. 2. A patient or his personal representative shall have the right to appeal to a higher court against a decision that the patient be subjected to treatment against his wishes to stop treatment. Procedural safeguards
1. The patient shall be entitled to choose and appoint a counsel to represent the patient as such, including representation in any complaint procedure or appeal. If the patient does not secure such services, a counsel shall be made available without payment by the patient to the‘extent that the patient lacks sufficient means to pay. 2. The patient and the patient’s counsel may request and produce at any hearing an independent health report and any other reports and oral, written and other evidence that are relevant and admissible. 3. Copies of the patient’s records and any reports on documents to be submitted shall be given to the patient and to the patient’s counsel except in special cases where it is determined that a specific disclosure to the patient would cause serious harm to the patient’s health or put at risk the safety of others. As domestic law may provide, any document not given to the patient should, when this can be done in confidence, be given to the patient’s personal representative and counsel. When any part of a document is withheld from a patient, the patient or
the patient’s counsel, if any, shall receive notice of the withholding and the reasons for it and it shall be subject to judicial review. 4. The patient and the patient’s personal representative and Counsel shall be entitled to attend, participate and be heard personally in any hearing. 5. If the patient or the patient’s personal representative or Counsel requests that a particular person be present at a hearing, that person shall be admitted unless it is determined that the person’s presence could cause serious harm to the patient’s health or put at risk the safety of others. 6. Any decision whether the hearing or any part of it shall be in public or in private and may be publicly reported give full consideration to the patient’s own wishes, to the need to respect and privacy of the patient and of other persons and to the need to respect the patient’s wishes as to in certain circumstances he would prefer to live or to die. 7. The decision arising out of the hearing and the reasons for it shall be expressed in writing. Copies shall be given to the patient and his or her personal representative and Counsel. In deciding whether the decision shall be published in whole or in part, full consideration shall be given to the patient’s own wishes, to the need to respect his or her privacy and that of other persons and to the public interest in the open administration of justice. Access to information
1. A patient (which term in this Principle includes a former patient) shall be entitled to have access to the information concerning the patient in his or her health and personal records maintained by a health facility. As domestic law may provide, any such information not given to the patient should, when this can be done in confidence, be given to the patient’s personal representative and Counsel. When any of the information is withheld from a patient, the patient or the patient’s counsel, if any, shall receive notice of the withholding and the reasons for it and it shall be subject to judicial review. 2. Any written comments by the patient or the patient’s personal representative or counsel shall, on request, be inserted in the patient’s file. Complaints
Every patient shall have the right to make a complaint through procedures as specified by domestic law if his wishes as regards treatment are not followed. Monitoring and remedies
States shall ensure that appropriate mechanisms are in force to promote compliance with these Principles, for the inspection of health facilities, for the submission, investigation and resolution of complaints and for the institution of appropriate disciplinary or judicial proceedings for professional
To die with dignity misconduct or violation of the rights of a patient of his autonomy in regard to his own life.
REFERENCES
or 1.
Implementation
1. States should implement these Principles through appropriate legislative, judicial, administrative, educational and other measures which they shall review periodically. 2. States shall make these Principles widely known by appropriate and active means. Saving
of existing
9. SUMMARY
2. 3.
rights
There shall be no restriction upon or derogation from any existing rights of patients, including rights recognized in applicable international or domestic law, on the pretext that these principles do not recognize such rights or that they recognize them to a lesser extent. AND RECOMMENDATIONS
The final word on the subject is still to be written. What emerges clearly is that concern for death with dignity follows a pattern of neglect of the interests and needs of the dying. This is true as much for governmental as for private services available or unavailable. Cultural and economic differences are not analyzed in a cohesive way. Moreover, the range of policy options pertinent to situations where either financial shortages or governmental legislation are paramount makes decisions more difficult. There is a need to shift the spotlight from individual or national health and their economic implications, to an international approach where micro and macro factors will have equal weight. It is recommended that a joint international seminar, bringing together non-governmental organizations and international institutions such as ‘Social Science and Medicine’ and International Organizations such as the ‘United Nations Centre for Human Rights’, WHO, UNESCO, etc. is organized with a view to drafting international guidelines which could serve as a basis for international legislation on the subject.
441
4.
5.
von
Bayer H. Theorie der summarischen Processe, mit Ausschluss des Concursprocesses, zunachst fur Zuhorer bestimmt von Dr Hieronymus Bayer 4, durchgesehene Aufl. Munchen. Verlag der koniglichen Hofbuchhandlung (von Ph. Jak, Bayer) 1938. Should the doctor ever help? Harvard Health Letter, August, pp. 4-8, 1991. Wolf S.- M. Nancy Beth Cruzan: no voice at all; Boon J. Jr Choosing death for Nancy Cruzan: Schoffield G. The calculus of consent; E&an I. MI Can others exercise an important patient’s right to die? The Hastings Centre Report, Jan./Feb. 1990. In the Matter of Karen Quinlan, an Alleged Incompetent. Supreme Court of New Jersey, 70 N.J. 10, 355 A.2d 647, 79 A.L.R.3d 205, 1976. Pureri A. When patients call the shots. Time, 9 Dec.
1991. 6. Euthanasia equals murder? The Economist, 15 Dec. 1990. 7. ‘Goodbye, Ida’. Times, 13 Jan. 1992. 8. World Health Organization. World Chronicle, 1 Nov.
1990. 9. United
Nations, Report of the Secretary-General, E/CN.4/Sub.2/1989/5. IO. Pan American Health Organization. AidF Profile of an Epidemic. Scientific publication, No. 514, PAHO, 1988. Il. Masada R. Danger in Number: Village Voice. 9 Nov. 1990. 12. Frank J. E., Raffin J. A. ef al. Initiating and withdraw-
13.
14. 15. 16. 17
18
ing life support, principles and practices in adult medicine. N. Engl. J. Med. 318,25-30, 1988; Lyn J. (Ed.) By no Extraordinary Means. University of Indiana Press, Bloomington, 1985. Curver C. M. and Gert B. Beyond the living will: Making advance directives more useful. Omega 21, 143. Henderson M. Beyond the living will [decreasing death anxiety]. Gerontologist 30, 90. Kiibler Ross E. On Death and Dying. MacMillan, New York, 1975. Griffin J. Dying with Dignity. Office of Health Economics, London, 1991. United Nations. Human Rights Questions. Human Rights questions including Alternative Approaches to improving the effective enjoyment of Human Rights and fundamental freedom, A/421 /17, 1991. United Nations. Report of the Secretary-General, A/46/366, 1991.
Sm. Sci.Med. Vol.35,No. 4,pp.433-441,1992
Pergamon Press Ltd
Printedin Great Britain
SECTION
F
TO DIE WITH DIGNITY LEONOR SAMPAIO 330
East 38th Street, Apt. llK, New York, NY 10016, U.S.A.
Abstract-This paper examines the conundrum facing an individual with a terminal disease who wishes to end his or her life in a manner that maintains a minimum of dignity. The State’s interest versus the individual’s right to live or die is examined in its various aspects. The interference by the State supplanting the Church as the authority that interprets the boundaries between life and death, with the individual losing his voice as well as his body to the impersonality of maintaining a life not worth living, is studied, as well as the implicit dangers when the freedom to decide when and who should die is measured against the present international economic situation. The need to listen to the language of the dying as well as to their need for a ‘closure’ is approached with a view to future study. Key words-terminal
care, patient options, dying with dignity, guidelines for terminal illness
1. INTRODUCl’ION
There is a Pushkin story describing the plight of a young servant girl who, overworked and unable to sleep for days, ends up murdering a baby she cares for and falls asleep during the trial. Somehow, I find a parallel between that tragic story and the overwhelming need for rest, with the plight of the terminally ill. To die with dignity, to make a valid honourable choice one needs to have a modicum of health. Guidelines of how to die with dignity cannot be built on the individualism of John Locke or the humanitarian ideals of Jean Jacques Rousseau but rather on a sense of civil responsibility to oneself and to others. Most of all, they must be based on never losing sight of the fact that their basic ‘raison d’itre’ is not to leave the helpless to their misery. Science and economics should not be empowered to determine policy and law. Just as different societies have different ideals, the perception of what is a death with dignity has many variants. In Western Society in general the civil rights of the terminally ill are presently polarized between the private feelings of the dying and industrial economic considerations. To keep an unconscious person alive with respirators and feeding tubes when there is no hope for recovery is inhuman. Advance directives such as living wills and durable powers of attorney have been created to allow individuals to control their own fate while a cognant choice can be made. However, in many cases the directives are not suffi-’ cient to permit ending a life when it is no longer considered worth living. 433
However, we have to watch that in advocating the right to die, patients are not going to exercise what Gestalt psychology of the first half of the 20th century labeled the need for ‘closure’, in this instance the need to fill a gap revolving around a personal conflict-illness. Hans von Bayer thinks that a profound fear of emptiness accompanies human encounters with the unknown and impels us to “domesticate the darkness” [l]. For this reason to have strict legislation on death implies in itself an attempt to establish parameters for unmarked territory. It has often been noted that scientific and technological developments provide increasing opportunities for better conditions of life. However, the same developments have provided the environment in which new social problems have developed, which challenge fundamental freedoms and human rights. Sophisticated new medical and psychotherapeutic technology can constitute a threat to the physical and intellectual integrity of the individual minimizing the degree of control and choice he has over his own life. There have been disturbing reports of scientific and technological products and methods being utilized to keep individuals alive against their will or, more ominously, when their conditions of life can hardly be described as having anything to do with human life. Procedures under law-including procedures that govern access to independent and impartial bodiesare of cardinal importance to the freedom of individuals and their integrity. Although no set of principles can aspire to cover every legal, medical, social and ethical nuance, they should provide a broad frame applicable to humankind.
LEONOR SAMPAIO
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The Universal Declaration of Human Rights that was proclaimed on 10 December of 1948 by the General Assembly of the United Nations states that: “All human beings are born free and equal in dignity and rights”. Our death needs a declaration that proclaims our right to exit this life in the same manner. 2. BALANCE
BETWEEN
TREATMENT
AND CHOICE
The balance between treatment and choice is a delicate one; to protect patients with incurable diseases or the terminally ill, from receiving inadequate care that might alleviate their suffering or prolong their days to protecting the same patients from overcare, and artificial and/or experimental care that will lengthen their lives when all characteristics of human life have disappeared. The debate over this question has been going on for years with Governments taking on religious overtones when they legislate that only the government has the power over life and death. It is a fine irony that western countries with a long democratic tradition deny a person-by law-that most fundamental choice; control over one’s own death. Institutional control vs private decision is becoming less ontological as world-wide new epidemics and world-wide deficiencies in health care make issues of life and death more acute. The lack of choice is defined in terms of minimum care or the embarrassment of too much care. 3. THE RIGHT TO CHOOSE
WHEN TO DIE
To think that regulations improve life is a misconception and an inaccuracy. We cannot, on the one hand, express abhorrence at the therapeutic termination of life and at the same time pretend that life constitutes an artificial link with a machine. A mentality that sanctions a limit on the individual’s freedom of choice is the same mindset that would restrict a patient’s right to choose. To tell a person that he must carry a disease to its end-when there’s no logical ending-that a person should be kept alive when he has lost control of his body is tantamount to telling a doctor what can be discussed with a patient. Paternalistic attitudes are out of date. To die with dignity should be a very private decision. In the United States, the question of the choice to die has been dealt with by many associations and societies. One of the most visible is “Concern for Dying/Society for the Right to Die” (now known as “Choice in Dying” after their recent merger) which were the originators of the Living Will. J. Patrick Hill, their Director of Education, stated that from it’s earliest days, we have viewed the dignity of a person’s death as conditioned by the range of choices available at the time of dying. For this reason, the principle of choice has informed both our educational and legal agenda. Thus, for example, in our educational work with
clinicians caring for dying patients, we have stressed the primacy of the patient’s right to make decisions. In our legal work, we have long advocated the so-called right to die. The phrase is misleading to the extent that it might suggest that as with any other right, there is with this right, the option of not using it. Despite that, it has proved to be effective and useful shorthand for public discussion. In its most expansive form, the phrase, right to die, has included active euthanasia, assisted suicide and suicide. It is no longer a crime to commit suicide in the United States, and in nine states there are no prohibitions against assisting suicide. But historically and legally, most of the controversy has been over the right to die, understood as a right to refuse or withdraw available medical treatments even though, given the patient’s underlying medical condition, refusal or withdrawal will result in death. It is as though, historically, legally and ethically, the fundamental question has been, if the treatment is available and would keep the patient alive, why would anyone want to refuse or withhold it, and die as a consequence? Our answer has been that since we arc talking about medical treatment, the individual has a right, protected by common law and constitutional law, to choose the medical circumstances under which he dies, that is, with or without aggressive medical care; with or without palliative care. As long as the individual, now a patient, is competent, the issue is relatively straightforward. It becomes much more complicated, however, when the patient is incompetent and therefore unable to make choices. In essence, this was the problem facing the N.J. Supreme Court when it decided the case of Karen Ann Quinlan in 1976. Believing correctly that her clinical condition did not abrogate her constitutionally protected right under the privacy principle to make medical choices, the court had to say how she could do that despite her medical condition. The answer, of course, is by anticipation; by executing advance medical directives that could become operative once the individual has become terminally ill and incompetent. Historically, the context out of which the Quinlan case and those that followed it operated was one in which the individual was attempting to stop unwanted aggressive medical treatment by asserting a right to die a natural death.
4. OPTIONS
AVAILABLE
TO PATIENTS
In increasing the right to choose, individuals are confronted with many possibilities including how to exercise their options. The assertion of a doctor’s right to assist a terminally ill patient to die has met with much criticism. In August 1991 the Harvard Health Letter interviewed Dr Federman, the Dean for Medical Education at Harvard, on the role of doctors in assisted suicide. Although he agreed that almost 100% of the time it would be unethical for a physician to assist a patient in the shortening of his life there are rare cases he noted in which suicide is a rational choice on the patient’s part, and one where it would not be wrong for the doctors to provide assistance. Among the factors listed as being paramount in making a decision the following were cited: (1) ensuring that neither the patient nor the physician were depressed; (2) that the patient’s judgement was not clouded by excessive medications; (3) clear diagnosis of the medical situation and the span of life that could be expected even in the best circumstances. However, Dr Federman felt that the doctor should never be obliged to assist with suicide.
To die with dignity The social and legal problems of suicide can be a joint liability both for patients as well as for physicians. Some states make suicide attempts illegal but, legally, the situation is more fraught with danger for the physician as, in most states, it can be considered a crime leading to punishment that can vary from losing a licence to going to jail [2]. However, accounts of doctors who, upon request, gave their patients barbiturates to sleep meanwhile informing them of the difference in dosage necessary to induce sleep or cause death meet with little controversy as the patient has the freedom of choosing the time and place and is not in need of assistance by the doctor. In the United States, there have been several cases involving the suspension of artificial life support systems. The case of Nancy Cruzan was the first to be heard by the U.S. Supreme Court. This case dealt with Nancy Beth Cruzan who had been in a vegetative state since an auto-accident in January 1983. Her parents tried to withdraw the life support apparatus but a trial court authorizing withdrawal was overruled in November 1988 by the Missouri Supreme Court. The ‘Hastings Center Report’ of January/February 1990 ran four articles by prominent authors analysing the problem from different points of view [3]. One of the articles, by S. M. Wolf, considered the loss of her voice as a human being, of the relationship with her body creating a world where nobody could either live or die; another article, by J. Bopp Jr, addressed the constitutional standing of the guardian, the ward’s best interests, and a quality of life exemption. The third article, by Scofield, deals with consent and the constitutional vision of preserving life and preserving liberty as well as the question of privacy. Finally, Marck Ellman discussed whether others can exercise an incapacitated patient’s right to die [3]. The Quinlan case which is the precedent to which almost all courts still refer suggested that the patient’s right to refuse medical care could be considered to be part of his or her constitutionally protected right of privacy. However, we have to watch that the Quinlan analysis is not carried too far and used in an indiscriminate manner. It has been stated that the State interest (in preserving life) weakens and the individual’s right to privacy grows as the degree of bodily invasion increases and the prognosis dims. Ultimately, there comes a point at which the individual’s rights should overcome the State’s ‘interest’ [4]. The question has been raised of “What will be the case when, for economic reasons, the State’s interest invades the individual’s right to privacy and the State decides that it is in the person’s best interests that he or she dies?’ [4, p. 3581. Ways of terminating life when it is no longer considered worth living are gaining more and more support. Dr Kevorkian, a retired Michigan pathologist, has devised a machine where the patients can
435
push a button and send a lethal dose of potassium into their veins. Although Kevorkian’s methods raise a lot of issues--since many members of the general public have a profound fear that one day they might lose control of their life and be left at technology’s mercy-alternatives, such as his, represent to many a choice to be considered [5]. In this connection, one of the most recent cases dealt with by the press, was that of MS Adkins, a sufferer from Alzheimer’s disease who enlisted Dr Kevorkian’s help in order to die while still in control of her faculties [6]. Do-it-yourself books have appeared and have enjoyed wide success. The Hemlock Society book Final Exit is still on the New York Times best-sellers list in New York after many weeks [6]. The media has also used the theme of the elderly dying to promote choice as in the adaptation for television of Betty Rollin’s best seller, Hard Wish, an account of how Rollins helped her 76-year-old mother to die when she could no longer stand the pain from ovarian cancer [7]. 5. CHOICE
AND DISCRIMINATION
Life and death is transcending the field of ethical, moral and health issues and is becoming a development issue at a time when world-wide shortage of funds will make bilateral aid much harder to come by. In the industrialized part of the world there is the danger that as the economic problems worsen the powers that be might undergo an overnight ‘conversion’ and encourage the death of those who are not economically productive. The shift could start by sheltering the helpers of would be suicides and by steering the media into a subliminal propaganda campaign for suicide. Market forces or governments should not be the ones to determine when it is best to live or to die. For instance, what are the options of a person suffering from an incurable disease-albeit not fatal -who has to depend on the taxpayers’ money to stay alive? Or of another person, who does have personal insurance but the cost of treatment becomes very high? At what point does the question arise of how long (and for how much) this person should be kept alive under treatment? What would be the parameters for decision? Ethical, quality of life, or economical? Even if the decision was entirely left to the individual concerned, it is obvious that if that individual has no private means the decision is not his but is a decision of those who have the power to make the choice. The economic implications of sickness are staggering. Dealing with one sickness alone-AID-WHO’s projections see 15-20 million people infected by the end of the decade, most of them in developing countries. This will come at a time when the global economy is facing a massive recession, when the
436
LE~NORSAMPAIO
global banking system is in crisis and when the industrialized nations, the United States, for example, has decreased its commitment to the WHO programme and when many other industrialized countries are decreasing their domestic commitments to international health programmes [8]. In Sub-Saharan Africa, it is projected that there will be 10 million orphans by the year 2000 with 20-25% of the adult force in urban areas of Central and East Africa dead by the same date [8]. It can be argued in the current economic situation that the process of selecting medical treatments is breaking down. Discriminating against people who have terminal diseases hamper many attempts to elaborate guidelines for choice. (One such disease which has received a lot of media attention is AIDS.) The treatment of this disease involves basic legal, moral and religious principles. Its impact on health care services and the burden that caring for affected people will place on society will be enormous. International bodies have started to address this problem. For example, in 1989, the United Nations Sub-Commission on the Prevention of Discrimination and Protection of Minorities had before it a proposal for a study on human rights and AIDS to be carried out in conjunction with the World Health Organization and its global programme on AIDS (91. In a paper published by the Pan American Health Organization (PAHO) on the World Health Organizations’ approach to the subject, the following questions were asked: (1) What is the best public health approach to people with HIV infection? What rights should they have? It concludes that respect for their human rights is the humane approach. (2) Who should be treated for AIDS on a mandatory basis? The two main ethical issues in this connection were: informed consent and confidentiality. WHO also considered merits of screening certain groups such as international travelers, prisoners, high-risk groups and special occupation groups. However the ethical questions not only remained the same but are weighed down by other considerations such as: are the human and economic costs of testing programmes outweighed by the potential benefits to the tested person and to society? What are the consequences of false positive and negative results? Will health care or other socially useful activities be deprived of resources by such a testing program? Do the potential benefits justify the allocation of scarce resources? (3) Who has the right to know if someone has HIV infection or AIDS? Is there a duty to warn other people? Although WHO has strongly urged its member countries to make AIDS a reportable disease there are no guidelines as to who, if anyone, has the right to be warned of potential exposure-based on ethical and public health principles and on the
position that the physician is obliged to inform a known sex partner. (4) How can society be protected against people who irresponsibly, or even deliberately, set out to infect others? WHO’s position is that isolation and quarantine of HIV patients is not recommended, but criminal sanctions may be applied against a person who intentionally transmits or clearly intends to transmit HIV to others although such cases are extremely rare and difficult to determine [lo]. The World Health Assembly adopted a resolution at its 1988 session that stated inter alia: The forty-first World Health Assembly strongly convinced that respect for human rights and dignity of HIV-infected people and people with AIDS, and of members of population groups, is vital to the success of national AIDS prevention and control programs and of the global strategy. Urges Member States, particularly in devising and carrying out national programs for the prevention and control of HIV infection and AIDS: 1. To foster a spirit of understanding and compassion for HIV-infected people and people with AIDS through information, education, and social support programs. 2. To protect the human rights and dignity of HIVinfected people and people with AIDS and of members of population groups, and to avoid discriminatory action against and stigmatization of them in the provision of services, employment and travel. 3. To ensure the confidentiality of HIV testing and to promote the availability of confidential counseling and other support services to HIV-infected people and people with AIDS. . [8].
On 12 April 1992, the definition of People with AIDS in the United States will change. Previously, HIV-infected people were diagnosed as having AIDS only after they developed one of the sicknesses associated with AIDS. As of April, any infected person with levels below 200 will be said to have AIDS. As lab tests can vary, as well as blood levels, this measure does not seem to lead to the broadening of access to benefits but may infringe on their right to privacy. It’s one thing to collect the names of patients with disability so they can receive government assistance. It’s quite another to infringe on the rights of those who might live and work for years without getting sick [l 11. Patrick Hill, Director of Education for Concern for Dying, wrote that: People with AIDS,
but especially AIDS activists in the United States, approach the right to die issue with considerable ambiguity. Politically and socially they feel expendable. A latent Puritanism and a vocal moral majoritarianism make people with AIDS-because of the link with homosexuality and drug addiction-likely scapegoats. People with AIDS can lose their jobs and with it health insurance. When that happens their ability to afford appropriate medical care is seriously compromised. In addition, because of the inadequate infrastructure of the American health care system, people with AIDS have to rely almost exclusively on acute care institutions for their care. A more judicious use of medical resources would dictate the availability of intermediate levels of care. But because they are not there, people with AIDS are forced, inappropriately, to use resources that
To die with dignity might be better used by people with other diseases.
None of
AIDS. If anything, it undermines their claim to proper medical care. this helps the case of people
with
Many groups suffering from terminal diseases have organized themselves in order to speak out in defense of their rights as citizens and for their well-being. This movement-provided it is not taken to extremes to benefit only one group-can be a vital force for change. Systems to help people with incurable diseases should include in their decision-making representatives of organizations that deal with the matter directly. This could promote equal opportunities in distribution of public funds and involvement in the preparation of policies aimed at the welfare of such groups. Patrick Hill, of “Concern for Dying”, wrote: In a situation where people with AIDS, already viewed as a social liability, begin to be perceived as getting more sophisticated care than their clinical condition calls for, they can become politically vulnerable. It is not surprising then that they view with alarm anything that might encourage stopping treatment. In this situation, they are convinced that the right to die could be=used cynically, because of its association with the refusal of treatment, to become for them the denial of treatment. In which case, the right to die would no longer represent a principle of autonomous choice for the individual, but the justification of denying care, certainly aggressive care, and possibly hastening death. Additional encouragement would come from the fact that AIDS is presently fatal, so that any care, however sophisticated, is finally futile. In relation to the clinical care of people with AIDS, the task is to see to it that the right to die remains a principle of self-determination allowing the person with AIDS, like any other fatally ill person, to choose within reason the circumstances of his dying; to prevent the right-to-die from becoming an excuse not to treat, thus depriving the person with AIDS of any real choice and in turn preventing him from dying with dignity. 6. ADVANCE
DIRECTIVES
Public opinion favours living wills as a way of instructing doctors not to use extraordinary measures to lengthen the life of a patient for whom death is certain. The problem with detailed instructions acceptable in Court is that no human being can have the foresight to state exactly what physical conditions and what treatments would be unacceptable or define a physical condition that makes life worthy of living. Advance Directives are instruments that enable persons to make anticipatory decisions when to die. Of those, the most common are living wills and Durable Power of Attorney for Health Care. However, none of these instruments can anticipate the amount of suffering an ill person experiences and at what point the quality of life is considered to have deteriorated. Making advance directives more useful has been the topic of several articles [12] in medical ethics literature. Living wills have been found to have limited usefulness. It has been suggested that a Durable Power of Attorney (DPA) for Health Care can be more useful because it creates an agent
437
who can represent the individual’s wishes, it applies to non-terminal as well as terminal conditions, it allows for reasonably free-grained decision making by someone who knows the patient’s wishes and can apply them to any given situation. It has been suggested that physicians should encourage patients to prepare specific Advance Directives [13, 141. Suggestions for making living wills more effective could include the directions on the insertion of a ‘suicide capsule’ that would only open after a certain period of time had elapsed since the insertion. This would be especially useful for patients with degenerative-memory types of disease. Any time-when they were still functioning they could choose to remove the capsules if they changed their minds and decided to remain alive no matter what the circumstances. The need for living wills has been emphasized in the United States by a new law requiring all federally funded hospitals, nursing homes and hospices to tell patients of their right to fill out a living will, specifying whether or not, if something goes wrong, they want-or not-to be kept alive [S]. Although the choice is commendable, the time they check into a hospital with all the added stress attached to it, is hardly the time when a patient should be requested to make a life and death decision. In this connection, it should be noted that only 15% of Americans had by December 1991 made out living wills. However, this new federal rule encourages them to do so [5]. 7. TERMINAL
CARE
Dying people may feel shame, fear, anger and betrayal. Their life process are breaking down and their degraded physical state puts them in a category apart. They live in a different country. Isolated from their families and relatives, they become a special race: the ill. The failure of the death choice is to address the plight of the sick from their own point. This is a minority that although easy to sympathize with for familial metaphors, cannot be empathized with because, to view death-the healthy-have to do with a coalition of varied states: the terminally ill, the carriers of incurable disease for which no cure is known, and the carrier of incurable disease that can be kept alive indefinitely if given the adequate medicine. Elizabeth Kilbler Ross’s book On Death and Dying studied the critically ill patients and evaluated their responses on what is happening to them. She examined the phases a patient goes through before final acceptance of his or her fate: denial and isolation, anger, bargaining, depression and finally acceptance [15]. Her book was the first to fully apprehend that the realization of death can only be absorbed in its intensity by the dying. Jane Griffin has analysed the switch from curative treatment to palliative treatment. The book tries to
LEONOR SAMPAIO
438
make it clear that it is not advocating termination of life but the decision not to prolong life under any and all circumstances which is central to the concept of ‘dying with dignity’ [16]. The premise of the book is that a substantial part of the population will end their lives in a period of terminal illness. For those who are too old or for whom no cure is possible, palliative medicine aimed at the relief of symptoms is the best course of treatment. The idea of hospice treatment for the terminally ill is gaining momentum in many places especially in Britain. Terminal care implies the need for a special kind of care that hospices are especially geared to promote. While hospice care does not deny the fact that the patient is dying, it ensures that both body and mind receive attention and care. The decision is made beforehand whether or not to provide aggressive treatment. At the hospice, treatment is determined by the patient’s personal circumstances. The main aim is to provide relief of painful symptoms [16]. Good management of pain control for these patients give them a better chance of dying with dignity. Treatment is switched to care, in accordance with how far the illness has diagnosed and what are the chances for recovery. Good treatment involves special nursing, medical and social care especially of communication between patients, family and friends [ 161. Deciding between hospice care and nursing homes should be based on whether people are in need of long-term care but still able to care of their own lives in and welcome a degree of autonomy and privacy and terminally ill patients or those in vegetative states or medically unstable who are better off in hospitallike environments. Usefulness and self-sufficiency define life. Sickness subjects to a self-transformation so great that, in the end, you are not recognizable even to yourself. Communication with the sick should not be on an incantory manner but with an intention to understand, as can be seen in Elizabeth Ktibler Ross’s book, On Death and Dying. Perhaps then we can recognize that in many instances the need for ‘closure’ is not only legitimate but also altruistic.
8.
DRAFT PROPOSALS FOR INTERNATIONAL GUIDELINES
In view of the present social-economic international situation there should be consideration given to enacting international legislation that would guarantee persons with incurable diseases and/or terminally ill the right to exercise their full consent in matters involving treatment and the choice of whether to live or to die. Standard rules on the equalization of opportunity for treatment should be enacted to avoid a situation where only the poor are without choices.
To be an effective contribution to individual rights any formulation should try to adequately reflect and accommodate legal and social systems without sacrificing the essential needs and basic rights of the individual human beings ultimately concerned. The following draft proposals are based on United Nations international legislation dealing with related matters presently in force or under study. Draft Proposal for Possible International Guidelines [17, 181for the Protection of Persons Suffering from Terminal INness Determination of terminal illness 1. A determination that a person has a terminal illness shall be made in accordance with internationally accepted medical standards. 2. A determination of terminal illness shall never be made on the basis of political, economic or social status, or membership of a cultural, racial or religious group, or any other reason not directly relevant to mental health status. 3. Family or professional conflict, or non-conformity with moral, social, cultural or political values or religious beliefs prevailing in a person’s community, shall never be a determining factor in diagnosing terminal illness. Medical examination No person shall be compelled to undergo medical examination with a view to determining whether or not he or she has a terminal illness except in accordance with a procedure authorized by domestic law. Conjdentiality
The right of confidentiality of information concerning all persons to whom these principles apply shall be respected. Role of community and culture in cases where patient chooses treatment 1. Every patient shall have the right to be treated and cared for, as far as possible, in the community in which he or she lives. 2. Where treatment takes place in a health facility, or hospice, a patient shall have the right, whenever possible, to be treated near his or her home or the home of his or her relatives or friends and shall have the right to return to the community as soon as possible. 3. Every patient shall have the right to treatment suited to his or her cultural background, and according to his or her wishes. 4. Every patient has the right to decide when to stop treatment in accordance with his or her cultural background and his or her wishes. Standards of care
1. Every patient shall have the right to receive such health and social care as is appropriate to his or her health needs, and is entitled to care and treatment
To die with dignity in accordance with the same standards as other ill persons. 2. Every patient shall be protected from harm, including unjustified medication, abuse by other patients, staff or others or other acts causing mental distress or physical discomfort. Treatment 1. Every patient shall have the right to be treated in the least restrictive environment and with the least restrictive or intrusive treatment appropriate to the patient’s health needs and the need to protect the physical safety of others. 2. The treatment and care of every patient shall be based on an individually prescribed plan, discussed with the patient, reviewed regularly, revised as necessary and provided by qualified professional staff. 3. Health care shall always be provided in accordance with applicable standards of ethics, including internationally accepted standards such as the Principles of Medical Ethics adopted by the United Nations General Assembly. 4. The treatment of every patient shall be directed towards preserving and enhancing personal autonomy. 5. Every patient is entitled to decide when to stop treatment. In cases where the patient is no longer capable of such decisions, advance directives left by the patient shall be followed. Medication 1. Medication shall meet the health needs of the patient and shall be given to a patient only for therapeutic or diagnostic purposes and shall never be administered as a punishment, or for the convenience of others. Health practitioners shall only administer medication of known or demonstrated efficacy. 2. All medication shall be prescribed by a health practitioner authorized by law and shall be recorded in the patient’s records. 3. No medication aimed at keeping the patient alive against his wishes should be administered. Consent to treatment 1. No treatment shall be given to a patient without his or her informed consent, except as provided for in paragraphs 6, 7, 8, 12 and 14. 2. Informed consent is consent obtained freely without threats or improper inducements after appropriate disclosure to the patient of adequate and understandable information in a form and language understood by the patient on: (a) The diagnostic assessment; (b) The purpose, method, likely duration and expected fit of the proposed treatment; (c) Alternative modes of treatment, including those less intrustive; and (d) Possible pain or discomfort, risks and sideeffects of the proposed treatment.
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3. A patient may request the presence of a person or persons of the patient’s choosing during the procedure for granting consent. 4. A patient has the right to refuse or stop treatment except as provided for in paragraphs 6, 7, 8, 13 and 15. The consequences of refusing or stopping treatment must be explained to the patient. 5. A patient shall never be invited or induced to waive the right to informed consent. If the patient should seek to do so, it shall be explained to the patient that the treatment cannot be given or stopped without informed consent. 6. Except as provided in paragraphs 7, 8, 12, 13, and 14, a proposed plan of treatment may be given to a patient without a patient’s informed consent if the following conditions are satisfied: (a) The patient is, at the relevant time, held as an involuntary patient: (b) An independent authority, having in its possession all relevant information, including the information specified in paragraph 2, is satisfied that, at the relevant time, the patient lacks the capacity to give or withhold informed consent to the proposed plan of treatment or, if domestic legislation so provides, that, having regard to the patient’s own safety or the safety of others, the patient unreasonably withholds such consent; (4 The independent authority is satisfied that the proposed plan of treatment is in the best interests of the patient’s health needs; and (4 The patient has not provided advance directives as regards treatment. 7. Paragraph 6 does not apply to a patient with a personal representative empowered by law to consent to treatment for the patient; but except as provided in paragraphs 11, 12, 13 and 14 treatment may be given to such a patient without his or her informed consent if the personal representative, having been given the information described in paragraph 2, consents on the patient’s behalf. 8. Except as provided in paragraphs 11, 12, 13 and 14, treatment may also be given to any patient without the patient’s informed consent if a qualified health practitioner authorized by law determines that it is urgently necessary in order to prevent immediate or imminent harm to the patient or to other persons. Such treatment shall not be prolonged beyond the period which is strictly necessary for this purpose. 9. Where any treatment is authorized without the patient’s informed consent, every effort shall nevertheless be made to inform the patient about the nature of the treatment and any possible alternatives, and to involve the patient as far as practicable in the development of the treatment plan. 10. All treatment shall be immediately recorded in the patient’s medical records, with an indication of whether involuntary or voluntary.
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11. Physical restraint or involuntary seclusion of a patient shall not be employed. 12. A major terminal medical or surgical procedure may be carried out on a person with terminal illness only where it is permitted by domestic law, where it is considered that it would best serve the health needs of the patient and where the patient gives informed consent, except that, where the patient is unable to give informed consent, the procedure shall be authorized only after independent review. 13. Clinical trials and experimental treatment shall never be carried out on any patient without informed consent. 14. In the cases specified in paragraphs 6, 7, 8, 12, 13 and 14, the patient or his or her personal representative, or any interested person, shall have the right to appeal to a judicial or other independent authority concerning any treatment given to him or her to stop treatment. Review body
1. The review body shall be a judicial or other independent and impartial body established by domestic law and functioning in accordance with procedures laid down by domestic law. It shall, in formulating its decisions, have the assistance of one or more qualified and independent health practitioners and take their advice into account, and abide by advance directives laid out by the patient, if any. 2. A patient or his personal representative shall have the right to appeal to a higher court against a decision that the patient be subjected to treatment against his wishes to stop treatment. Procedural safeguards
1. The patient shall be entitled to choose and appoint a counsel to represent the patient as such, including representation in any complaint procedure or appeal. If the patient does not secure such services, a counsel shall be made available without payment by the patient to the‘extent that the patient lacks sufficient means to pay. 2. The patient and the patient’s counsel may request and produce at any hearing an independent health report and any other reports and oral, written and other evidence that are relevant and admissible. 3. Copies of the patient’s records and any reports on documents to be submitted shall be given to the patient and to the patient’s counsel except in special cases where it is determined that a specific disclosure to the patient would cause serious harm to the patient’s health or put at risk the safety of others. As domestic law may provide, any document not given to the patient should, when this can be done in confidence, be given to the patient’s personal representative and counsel. When any part of a document is withheld from a patient, the patient or
the patient’s counsel, if any, shall receive notice of the withholding and the reasons for it and it shall be subject to judicial review. 4. The patient and the patient’s personal representative and Counsel shall be entitled to attend, participate and be heard personally in any hearing. 5. If the patient or the patient’s personal representative or Counsel requests that a particular person be present at a hearing, that person shall be admitted unless it is determined that the person’s presence could cause serious harm to the patient’s health or put at risk the safety of others. 6. Any decision whether the hearing or any part of it shall be in public or in private and may be publicly reported give full consideration to the patient’s own wishes, to the need to respect and privacy of the patient and of other persons and to the need to respect the patient’s wishes as to in certain circumstances he would prefer to live or to die. 7. The decision arising out of the hearing and the reasons for it shall be expressed in writing. Copies shall be given to the patient and his or her personal representative and Counsel. In deciding whether the decision shall be published in whole or in part, full consideration shall be given to the patient’s own wishes, to the need to respect his or her privacy and that of other persons and to the public interest in the open administration of justice. Access to information
1. A patient (which term in this Principle includes a former patient) shall be entitled to have access to the information concerning the patient in his or her health and personal records maintained by a health facility. As domestic law may provide, any such information not given to the patient should, when this can be done in confidence, be given to the patient’s personal representative and Counsel. When any of the information is withheld from a patient, the patient or the patient’s counsel, if any, shall receive notice of the withholding and the reasons for it and it shall be subject to judicial review. 2. Any written comments by the patient or the patient’s personal representative or counsel shall, on request, be inserted in the patient’s file. Complaints
Every patient shall have the right to make a complaint through procedures as specified by domestic law if his wishes as regards treatment are not followed. Monitoring and remedies
States shall ensure that appropriate mechanisms are in force to promote compliance with these Principles, for the inspection of health facilities, for the submission, investigation and resolution of complaints and for the institution of appropriate disciplinary or judicial proceedings for professional
To die with dignity misconduct or violation of the rights of a patient of his autonomy in regard to his own life.
REFERENCES
or 1.
Implementation
1. States should implement these Principles through appropriate legislative, judicial, administrative, educational and other measures which they shall review periodically. 2. States shall make these Principles widely known by appropriate and active means. Saving
of existing
9. SUMMARY
2. 3.
rights
There shall be no restriction upon or derogation from any existing rights of patients, including rights recognized in applicable international or domestic law, on the pretext that these principles do not recognize such rights or that they recognize them to a lesser extent. AND RECOMMENDATIONS
The final word on the subject is still to be written. What emerges clearly is that concern for death with dignity follows a pattern of neglect of the interests and needs of the dying. This is true as much for governmental as for private services available or unavailable. Cultural and economic differences are not analyzed in a cohesive way. Moreover, the range of policy options pertinent to situations where either financial shortages or governmental legislation are paramount makes decisions more difficult. There is a need to shift the spotlight from individual or national health and their economic implications, to an international approach where micro and macro factors will have equal weight. It is recommended that a joint international seminar, bringing together non-governmental organizations and international institutions such as ‘Social Science and Medicine’ and International Organizations such as the ‘United Nations Centre for Human Rights’, WHO, UNESCO, etc. is organized with a view to drafting international guidelines which could serve as a basis for international legislation on the subject.
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4.
5.
von
Bayer H. Theorie der summarischen Processe, mit Ausschluss des Concursprocesses, zunachst fur Zuhorer bestimmt von Dr Hieronymus Bayer 4, durchgesehene Aufl. Munchen. Verlag der koniglichen Hofbuchhandlung (von Ph. Jak, Bayer) 1938. Should the doctor ever help? Harvard Health Letter, August, pp. 4-8, 1991. Wolf S.- M. Nancy Beth Cruzan: no voice at all; Boon J. Jr Choosing death for Nancy Cruzan: Schoffield G. The calculus of consent; E&an I. MI Can others exercise an important patient’s right to die? The Hastings Centre Report, Jan./Feb. 1990. In the Matter of Karen Quinlan, an Alleged Incompetent. Supreme Court of New Jersey, 70 N.J. 10, 355 A.2d 647, 79 A.L.R.3d 205, 1976. Pureri A. When patients call the shots. Time, 9 Dec.
1991. 6. Euthanasia equals murder? The Economist, 15 Dec. 1990. 7. ‘Goodbye, Ida’. Times, 13 Jan. 1992. 8. World Health Organization. World Chronicle, 1 Nov.
1990. 9. United
Nations, Report of the Secretary-General, E/CN.4/Sub.2/1989/5. IO. Pan American Health Organization. AidF Profile of an Epidemic. Scientific publication, No. 514, PAHO, 1988. Il. Masada R. Danger in Number: Village Voice. 9 Nov. 1990. 12. Frank J. E., Raffin J. A. ef al. Initiating and withdraw-
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ing life support, principles and practices in adult medicine. N. Engl. J. Med. 318,25-30, 1988; Lyn J. (Ed.) By no Extraordinary Means. University of Indiana Press, Bloomington, 1985. Curver C. M. and Gert B. Beyond the living will: Making advance directives more useful. Omega 21, 143. Henderson M. Beyond the living will [decreasing death anxiety]. Gerontologist 30, 90. Kiibler Ross E. On Death and Dying. MacMillan, New York, 1975. Griffin J. Dying with Dignity. Office of Health Economics, London, 1991. United Nations. Human Rights Questions. Human Rights questions including Alternative Approaches to improving the effective enjoyment of Human Rights and fundamental freedom, A/421 /17, 1991. United Nations. Report of the Secretary-General, A/46/366, 1991.