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Perspectives |
1 From the Department of Radiological Sciences, University of California, Irvine Medical Center, Orange. Received July 10, 2001; accepted July 13. Address correspondence to the author, 18961 Castlegate Ln, Santa Ana, CA 92705 (e-mail: rmfriede@uci.edu).
Index terms: Medicolegal problems Perspectives Radiology and radiologists, socioeconomic issues
Everyone has a strong opinion regarding the concept of euthanasia. Religious, ethical, moral, cultural, and legal concepts influence our attitudes toward euthanasia even when we consider limiting its use to individuals with incurable terminal illness or individuals in the vegetative state. This is a subject ethicists disagree about, politicians avoid, and religious leaders oppose. Euthanasia occurs on a daily basis, however, and should be discussed.
Euthanasia is derived from the Greek and means good or pleasant death. Euthanasia can be passive or active. Withholding of therapy is considered to be passive euthanasia, while withdrawal of therapy or administration of an overdose of sedatives would be considered active euthanasia (1). The euthanasia debate has become more meaningful as medical technology has improved. Technology today allows almost limitless maintenance of life, and the exact time of death may be determined by the decision to withhold or withdraw technical support. Prendergast and Luce (2) reported that, in 1992-1993, the recommendation to withhold or withdraw life support in the intensive care unit (ICU) immediately preceded 90% of deaths.
Although ethicists believe that there is no ethical difference between withholding and withdrawing therapy, there may be moral and legal differences. In a questionnaire sent to 504 ICU physicians in western European countries, 93% of respondents stated that they sometimes withhold therapy, while 77% say that they sometimes withdraw therapy (1). Melltorp and Nelstun (3) sent another questionnaire to 148 health care professionals in Sweden, and they reported that more than 50% of the professionals in the ICU are of the opinion that there is an ethical difference between withholding and withdrawing treatment. Withholding is passive and therefore is an omission, while withdrawing is active and is described as an action. To withhold life-sustaining treatment is to allow the patient to die, while withdrawal of such treatment is active intervention and, therefore, is the act of killing the patient. Therefore, there is substantial disagreement between individuals, depending upon their moral and religious backgrounds, with regard to the ethical difference between withholding and withdrawing treatment.
In 1999, the Council on Ethical and Judicial Affairs of the American Medical Association affirmed the ethical standards of withdrawal or withholding of interventions in the patient in a persistent vegetative state and in the terminally ill or in those with a moribund condition (4). The council members affirmed their support for advanced care planning and for the use of a range of orders not to intervene, such as "do not resuscitate." Although realizing that the elimination of futile care will save needed resources, they stress that this should not be the motivation for a declaration of futility. Ideally, when care becomes futile, it is desirable that there be an agreement between physician, patient, and/or family to withhold or withdraw therapy. If there is no agreement, consultations or second opinions should be obtained. If there still is no agreement after these consultations, the council believes that there should be a regulatory body established within the institution or community that would provide public, patient, professional, and ethical guidance to determine the care in the case. The problem is that management of the end of life is an overwhelming emotional experience for the patient and family and is fraught with moral and religious concepts. These concepts may overwhelm any logical decisions that the physician may suggest. The response of different individuals to decisions regarding therapy at the end of life will vary tremendously, increasing the difficulty of establishing rules or guidelines. This may be because the familys judgment of the qualitative state of the patients life may markedly differ from that of the physician. This is a problem that goes to the very core of human nature and is not one that can be easily decided in committee.
Medical care in the last year of life consumes 10%12% of the total health care budget and 28% of the Medicare budget (5). Lubitz and Riley (6) used Medicare files to calculate that half of the dollars consumed in the last year of life are actually consumed in the last 60 days, with 40% spent in the last 30 days of life. Even though the percentage paid by Medicare in the last year of life in 1976 and 1988 was the same, the actual payments increased from $3,488 per person in 1976 to $13,316 per person in 1988. Although it may sound crass to consider cost savings associated with the termination of life, such savings might be considerable. Even the use of hospice care in the last month of life provides considerable savings. Emmanuel (5) showed that Medicare payments for hospice care in the last month of life averaged $4,667, while nonhospice care payments for the last month of life averaged $8,723. Most savings would occur in the last month of life, when the determination of whether the patient is in a terminal incurable state can frequently be made. Interestingly, Emmanuel believes that there is selection bias regarding hospice care. Patients who select hospice care or make advanced directives regarding the end of life are patients who have preferences to avoid aggressive care and medical interventions and, of equal importance, have the fortitude to actually refuse such care and interventions near death.
Cancer is one of the few diseases in which relatively accurate predictions about survival are possible, and patients with cancer seem to confront their own mortality more often than do patients with other terminal conditions. About 25% of Medicare patients with cancer use the hospice benefit, while fewer than 10% of Medicare patients with other diseases do so (5). Although some 80% of Americans endorse advanced directives, only 20%25% have the fortitude to actually use them (5).
The evidence suggests that, overall, managed health care has had little if any impact on ICU resource utilization (7), although managed health care organizations are more likely to use hospice care and other community programs to improve end-of-life care and restrict costs. There are few numbers related directly to cost-effectiveness in end-of-life care. Considering those patients with the worst prognosis, the cost-effectiveness ratio of initiating dialysis was $274,000 per qualitatively good year of life, and that of cardiopulmonary resuscitation was $537,000 per qualitatively good year of life. Conventional health care initiatives are deemed cost-effective if the ratio is less than $100,000 per life saved (7). Obviously, in those patients approaching the end of life with a poor prognosis, therapy is far from cost-effective. However, many patients and most families do not like to acknowledge the probability of death. Many believe that all diseases can be managed or that a miracle will occur in their particular case. Some physicians resist the concept of termination of life, and some consider death equivalent to failure. An overlying problem is that one can predict the probability of death for a population of patients but generally cannot predict the time of death in an individual patient.
In 1995, an Oregon referendum made it legal for physicians to assist in the suicide of terminally ill patients (8). Although the law states that physicians can only prescribe a lethal amount of medication for competent terminally ill patients who request it, there is the obvious danger of extending this to patients who lack decisional capacity and for whom the decision will be made by family or physician. Aside from the Oregon law, euthanasia is illegal in the United States and is considered a form of homicide, even though the motive may be merciful rather than malevolent.
Walker (8) defines three forms of euthanasia. When euthanasia is performed with the consent of the patient, it is called voluntary euthanasia, while euthanasia performed in incapacitated patients who do not have the ability or lack the decisional capacity to make informed decisions is called nonvoluntary euthanasia. The third form of euthanasia is involuntary euthanasia, which is performed against the patients wishes.
The U.S. Supreme Court has held that competent patients may refuse any treatments, including those that sustain life (9). The Court stated that there must be clear and convincing evidence of the patients wishes, which then has the potential of limiting the role of surrogates in making decisions for patients who are not competent. Despite this, many states now allow surrogates to refuse treatment on behalf of incompetent patients. The Supreme Court in two decisions (Washington v Glucksberg and Vacco v Quill) has tried to define the difference between withdrawal of life support and assisted suicide (9). The justices stated that when a patient refuses life-sustaining medical treatment, he or she dies of the underlying fatal disease or condition, but if the patient ingests lethal medication, he or she is killed by that medication. Today, there is general acceptance of the concept of withholding life support at the request of the patient who is terminally ill. The central moral questions are if it is ever right for a physician to withdraw life support without the patients expressed consent and if it is ever right to take the life of a patient who requests it.
A common argument against legalizing euthanasia is that this will place us on a "slippery slope," where it is difficult to maintain ones balance (8). If voluntary euthanasia is legalized in terminally ill patients as a form of health care, then there is a strong possibility that this will gradually extend to physician-assisted suicide in patients who are not terminally ill and to nonvoluntary euthanasia in incapacitated individuals. Currently, as most courts see it, the right to die is actually a right to refuse unwanted medical treatment, not a right to kill oneself (9). The courts have stated that the right to die expressed by a patient does not terminate when the patient is incapacitated and cannot express it again. Many people believe that if we start the euthanasia merry-go-round and legalize voluntary euthanasia, it will then be a short move in the future to end life not on the basis of patient choice but at the choice of others.
Luce and Alpers (9) discuss the concept of futile care, which implies that the treatment given cannot achieve the desired result and therefore is useless. The clinical paradigm of futile care includes interventions in patients in a persistent vegetative state, interventions in the terminally ill, use of aggressive therapy for advanced fatal illness without a realistic expectation of substantial palliation, and the use of antibiotics or intravenous hydration in patients in a moribund condition (4).
When a patient enters a permanent vegetative state that does not require life support, withdrawal of feeding is considered to be acceptable. In Western countries, about 89% of American physicians, 65% of British physicians, and 56% of Belgian physicians report that withdrawal is acceptable (1). Vincent (1) states that he thinks it is more acceptable to administer sedatives so the patient dies rapidly and comfortably than to withdraw feeding so that the patient simply starves to death. He believes that our current definition of death as brain death is too narrow and that permanent loss of cognitive life should be considered equivalent to brain death.
The whole question of competency of patients near the end of life, especially in the confusing atmosphere of the ICU, again raises the moral question regarding termination of life. Patients in such surroundings are frequently confused as a result of the disease process plus the medications received and the whole atmosphere of the ICU itself. In a European questionnaire, one-fifth of responding physicians replied that they would give treatment they believe to be essential even if it was refused by the patient (1). In the United States, Asch et al (10) surveyed ICU physicians and found that one-third had continued life-sustaining therapies despite patient and surrogate wishes that it be discontinued, while over 80% had on occasion unilaterally discontinued life-supporting treatment judged to be futile. Obviously, there are conflicting opinions, and the same physician may handle similar cases differently. Vincent (1) states that end-of-life decisions are fraught with individual, moral, religious, cultural, and legal difficulties. He believes that changing the law is not likely to change the system. He thinks that the general rule to shorten someones life should be condemned and that changing the law would just give opportunities to those who might abuse it. He also believes that we do not want to bureaucratize health care by requiring multiple committees, since our object is to preserve human dignity and facilitate death without pain.
The permanent vegetative state is diagnosed when a patient is unaware of himself or herself and of the environment and there is no prospect for any change in this state by any means (11). Wade (11) states that this is not always an easy decision, because there is a spectrum in the vegetative state from low awareness to full awareness. Many ethical questions arise, since we do not have adequate tests for awareness that are absolute, and, therefore, we cannot always equate the vegetative state with unawareness, which leaves us with a certain degree of uncertainty about the diagnosis.
Nasraway (12) proposes guidelines to minimize the problems arising in the end-of-life scenario. First, set realistic expectations for patient outcomes to the family and ensure that all providers present a consistent message. Second, meet regularly with the family for updates and continue to be realistic. When things appear hopeless, ask the family members what they think the patient would want in the event of hopelessness if the patient could speak for himself or herself. Finally, establish a time-limited trial of several days of aggressive therapy to determine if the patients response improves, telling the family in advance that if this does not work they should contemplate withdrawing or withholding treatment.
End-of-life care becomes even more problematic in children with chronic critical illnesses. These children are often technology dependent. The question is should we prolong life just because we can? The standard would be the best interest of the child, with the parents as the proxy. The major cases that would be considered for euthanasia are those where the infant is irreversibly comatose, where treatment is futile and merely prolongs dying, and where treatment would be inhumane (13). There is an enormous range, from the anencephalic child at one end to the neurologically impaired and mentally retarded child at the other. The Royal College of Pediatrics in Child Health has delineated five circumstances in which withdrawal of treatment should be considered (13): brain death; permanent vegetative state; prolonged survival with unreasonable suffering, where further treatment delays death without alleviating suffering; and when the child and family believe that continued treatment is unbearable. Rushton (14) points out that health care decisions are not discrete events or decisions but are woven into the fabric of family life.
Nelson and Danis (15) state that often only in retrospect do we recognize the terminal nature of a critical illness. It is difficult, therefore, to know when to shift from cure-oriented to comfort-oriented care. The hospital mortality rate among certain large ICU groups is still over 40% (15). More than 70% of patients reported having pain in the ICU, with 63% of these rating their pain to be moderate to severe. Part of our problem is our professional culture, in which saving lives is traditionally valued more highly than competent compassionate care at the end of life. Obviously, palliative care should be provided as a component of intensive care to all critically ill patients, whether their condition is curable or not. The patients wishes are paramount, since many patients want to pursue a longer life even if the quality of life or comfort is compromised. In principle, people want a peaceful, dignified, comfortable death, but in reality they do not want it quite yet.
Fuchs (16) claims there are important ethical differences between stopping treatment and killing. He analyzed the inherent structure of the physicians actions in each case. By killing, he states that we understand a physical action that entails the death of another person. Killing has certain connotations that reach far beyond the level of physical action. He says that an action directed against the organism as a whole, even if humanely motivated, must in the end be an action that negates the person. It implies that the persons life is useless or not worth living, and that this is not compatible with respect to the dignity of another person.
Meier et al (17), in 1996, mailed a questionnaire to 3,102 physicians in 10 specialties that they thought were most likely to receive requests from patients for assistance with suicidal euthanasia. They received 1,902 (61%) completed questionnaires. Eleven percent of the physicians said that under current legal constraints, there were circumstances in which they would be willing to hasten the patients death by prescribing medication. Seven percent said that they would provide a lethal injection. Since entering practice, 18.3% of the physicians reported having received a request from a patient for assistance with suicide. Sixteen percent of the physicians who received such a request (3.3% of the entire sample) reportedly had written at least one prescription to be used to hasten death, and 4.7% said that they had administered at least one lethal injection. The questionnaire results show that the decision to honor a request for voluntary euthanasia is not rare in the United States. These findings suggest that, in the United States, the frequency of voluntary euthanasia may be increasing, yet doing so in an unsupervised manner. Although a violation of a code of law is illegal, many physicians believe that this response to patients must be based on moral values that transcend codes of law. It accentuates the need for some mechanism, such as a regulatory committee of the community or institution, that can be used to properly assess the patients mental state and the adequacy of palliative care before responding to such requests.
In euthanasia, the taking of a life would always be dependent on the observers personal values. There are really no objective criteria as such that would be equally objective to every observer. Justice, therefore, cannot safely be allowed to rest on personal opinions, because such opinions cannot be settled with objective argument. In the past 6 years, government-sponsored inquiries in four countries into the consequences of legalizing euthanasia all reached the same conclusion: Such a law would always be unsafe because it would never be made free of the possibility of endangerment of the lives of some others who did not wish to die. The New York State Task Force stated in 1994 that no matter how carefully any guidelines are framed, euthanasia would be practiced through the prism of social inequality and bias that characterizes services, including health care, in all segments of our society (18). Such practices will pose the greatest threats to those who are poor, elderly, members of a minority group, or those without access to good medical care. Anyone who wants to support euthanasia must first solve these problems.
When discussing regulatory committees, Pollard (18) makes the following points: The requirement for more than one doctor is meaningless unless both doctors are competent in terminal care and the two doctors are not friends. The requirement of a psychiatric consultation, if intended to help detect treatable emotional disturbances, is problematic because psychiatrists find it particularly difficult to diagnose depression in the terminal ill, and the psychiatrist often becomes involved in the emotional content of the patients plight. A patient may request an end to life because he or she is in a period of depression.
There is a serious chance of error in the estimate of future length of life, which is difficult even for experts to predict. Informed consent may not be truly informed consent, since we cannot ensure that this information will not be partial, biased, or incorrect and because consent most often is obtained in private. The presence of an expert observer would be needed. The doctor is the chief actor and writer of the report and may be protected legally by the euthanasia law, but there is no guarantee that he or she is properly trained to assess this situation. Pollards (18) last comment is that nonvoluntary medical killing might occur with alarming frequency once euthanasia is legalized. He comments on two recent cases: One is the case of Harold Shipman, an English doctor convicted of the murder of 15 patients and suspected in the murder of up to 160 more; the other is the case of Michael Swango, an American doctor found guilty of murdering three patients and suspected in the killing of another 60 (18). These cases show how easy it is for physicians to conceal murder and how easy it would be to practice nonvoluntary euthanasia. A medical ethics committee of the House of Lords in England stated in January 1994 that a euthanasia law "would give rise to more and more grave problems than it sought to address" (18).
There is a large percentage of patients, particularly those in a coma or the so-called vegetative state, in whom there is always a measure of uncertainty and, therefore, possible error. This raises ethical issues concerning the nature of consciousness, the quality of life, the value society attributes to life, and the handling of uncertainty (11). There is no standard of awareness, and data on prognosis are limited. There are many anecdotal accounts of late recovery. Projection in these cases is much more difficult than projection in terminal cancer cases. Decisions must be made about the allocation of substantial health care resources to patients who are in a vegetative state and who, in most cases, will not recover awareness.
Another factor is in the method of dying. Conscious people suffer greatly if they die of dehydration, which occurs with the withholding or withdrawal of life support. In individuals in a vegetative state, in whom the degree of awareness is unknown, we do not know whether there is any conscious effect of dehydration. This also precludes any use of organs for transplantation, which may run counter to the patients wishes. Again, there are huge ethical, moral, and religious concepts that must be considered along with the uncertainty of the patients state of awareness and the potential for recovery that may be present in a very small percentage of cases. Should we perform nonvoluntary euthanasia in such patients? There is much more support for euthanasia when there can be a determination that there is no chance of survival. Major debate would occur concerning end-of-life decisions because of quality of life issues rather than survival issues.
Pollard (18) stated that in the Netherlands, voluntary euthanasia has been practiced for several years, and although in most cases it is literally against the law, physicians have not been prosecuted for their actions. Nonvoluntary euthanasia is also practiced in the Netherlands, where it was first reported in 1990 when 1,000 instances were recorded (18). According to the law in the Netherlands, this is murder and not euthanasia; however, the practice has continued. In the Netherlands, euthanasia in newborns is against the law. In a 1999 study (19), the frequency in which death in the neonate was preceded by a decision to forego treatment was 62% of all deaths in infants under 1 year of age, and in neonatal ICUs the percentage was 87%. Over 80% of pediatricians in the Netherlands support the option of euthanasia but believe that there must be public review. This might consist of an independent committee of medical, judicial, and ethical professionals. Most of these patients have severe congenital or central nervous system anomalies. Doctors who participate believe that they are morally and legally entitled to forego life-sustaining treatment when there is no chance of survival. Here again, we must consider the problem of quality of life. Is poor quality of future life a motive to forego life-sustaining treatment? A commission set up in 1996 by the Netherlands Ministries of Health and Justice reported in 1997 that decisions to withhold or withdraw life-sustaining treatment should, in principle, be part of normal medical practice (19). It has been stated (18) that if nonvoluntary euthanasia had been practiced in the United States at the same rate as prevailed in the Netherlands in 1990, the number of cases in that year would have exceeded the combined total of all deaths in the United States due to suicide and homicide.
In a 1994 survey in Australia of 10% of the medical practitioners there, 19% admitted that they had ended life deliberately and, on 49% of those occasions, without the patients request (18). In 1998, a report was published of the responses of 3,102 physicians in the United States regarding practices of assisted suicide and euthanasia (18). It was reported that 54% of the requests were made by a family member or partner, not by the patient. The author of that report states that if voluntary euthanasia is legalized and the level of respect for human life is lowered, it would probably be considered a beneficial remedy to change voluntary to nonvoluntary euthanasia, particularly if the costs of medical care continue to rise; it would be naive to presume that this would not happen.
More recently, members of Parliament in the Netherlands voted to enshrine in law the exemption from criminal prosecution for doctors performing euthanasia within strict guidelines. If this law is enacted, the Netherlands will become the first country in the world to legislate euthanasia (20). It is currently estimated that approximately 3,600 cases of euthanasia occur in the Netherlands yearly. The new law would require that doctors be convinced that the patients request is voluntary and well considered, that the patient is facing unremitting and unbearable suffering, and that the physician has reached a conclusion that there is no reasonable alternative. This must be agreed on by a least one other independent physician. In the case of minors, parental consent must be obtained. The euthanasia is then judged by a regional committee. Under the proposed law, a persistent vegetative state and dementia are deemed insufficient indicators of unbearable suffering. The results of a 1998 survey show that more than 90% of people and physicians in the Netherlands support euthanasia (21).
Pouchard and associates (22) point out that it can be difficult to understand or predict what motivates a patient to desire euthanasia. Patients with depression and pain are likely to request euthanasia, but these are symptoms that may be reversible by using specific therapy. In some patients, lack of appropriate medical care leads to despair and hopelessness, and the patient may request euthanasia as a method of getting caregivers to pay more attention to his or her problems. The authors state that the desire for death must be considered first as a symptom, not as a clear and autonomous wish that must be respected.
There is an extensive literature regarding euthanasia. As is evident from the sample presented here, the term euthanasia is loosely used to cover withholding of therapy (passive euthanasia), as well as withdrawal of therapy or administration of overdoses of sedatives (active euthanasia, which also includes physician-assisted suicide). The physician population appears to accept the concept of withholding therapy and, to a lesser extent, withdrawing therapy, which might result in legal action.
Those who object to any form of euthanasia do so on moral or religious grounds. The wishes of patients who object to euthanasia on religious grounds must be respected. Objections on moral grounds are more complex. Many physicians object because of the slippery slope, which they believe cannot be contained. They may well be right. It is difficult to guarantee that if we allow euthanasia in a patient who requests termination of life because of incurable terminal disease or, for the patient in a persistent vegetative state, whose family makes the request, that this will not be extended by physicians to nonvoluntary euthanasia, where patients are terminated when euthanasia was not requested. Therefore, aside from basic moral and religious objectives, we have several controversial areas. The major ones are (a) the possible slide from requested voluntary euthanasia to involuntary euthanasia, (b) the difficulty in evaluating the persistent vegetative state and degree of patient awareness, (c) the variability of the level of quality of life that is acceptable to the individual patient and family, (d) the acknowledged fact that a healthy patient who states that he or she does not desire life support may change his or her mind when life support is actually needed, and (e) that a request for euthanasia, particularly in a depressed individual, sometimes represents an effort to obtain more attention and support from the physician.
Can we devise a relatively foolproof system for euthanasia? I think the answer is no. Can we devise a system just for voluntary euthanasia for those who request it? I believe it would be quite difficult. If we limit euthanasia to hospitalized patients with terminal illness or who are in a permanent vegetative state, we might attempt the following approach: First, for patients with terminal disease, euthanasia would be limited to those who are competent to make the choice and where the physician and a hospital euthanasia committee, as suggested by the Council on Ethical and Judicial Affairs of the American Medical Association (4), agree that the patient has a terminal illness for which further therapy is futile. The committee must agree that the probability is that the patient will die within 30 days. Second, euthanasia might be allowed for a patient in a persistent vegetative state for over 2 months when the physician and hospital euthanasia committee believe that recovery will not occur and when the patient has previously requested, in writing, that he or she does not desire life support and the family supports this decision. Within these fairly well-defined limits, we could evaluate the results over a period of a few years. If euthanasia cannot be controlled within these limits, then we can speculate that control is impossible.
In reality, patients with terminal disease or in a vegetative state are having medical support withheld or withdrawn and are, in effect, undergoing euthanasia. The change would be open acceptance of what is happening and, in effect, legalization of euthanasia. Further, if euthanasia is to be legalized, I believe it is far more humane to administer an overdose of sedatives than to withhold or withdraw life support, which, in many instances, may cause the patient discomfort.
The frequency of voluntary euthanasia appears to be increasing but in an unsupervised manner. Perhaps it is time to face this issue and attempt to regulate by means of legislation what is already occurring. Many will disagree on moral or religious grounds, and many will disagree because of the possibility of the slippery slope. I freely admit that mistakes will be madebut this is true in all aspects of patient care. I am not suggesting a limited form of euthanasia primarily as a money-saving device. I believe that it may provide a more humane and dignified method for the end of life.
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