Withholding or Withdrawing Treatment at the End of Life
Withholding treatment refers to not beginning a particular treatment, whereas withdrawing treatment refers to stopping a treatment that has been started: “Something temporal, by definition, distinguishes withholding from withdrawing: the historical fact of the initiation of therapy” (Sulmasy and Sugarman, 1994, p. 218). In the United States the American Medical Association (AMA) (1996) takes the position that there is “no ethical distinction between withdrawing and withholding life-sustaining treatment.” Howard Brody (1995) agrees that there is no useful distinction between withholding and withdrawing, and argues that the purported distinction can distract attention from the ethically relevant issues of the patient’s wishes and the effect of the treatment (p. 716).
As an ethical matter, a patient’s right to accept or decline particular treatments at the end of life is based on the principle of autonomy (Beauchamp and others, p. 397). In some cases, however, the principle of beneficence might outweigh the patient’s interest in autonomy, especially if the proposed treatment would reduce pain or increase functioning without adverse consequences or if the patient were unable to make a rational decision about accepting or declining treatment. Utilitarians would also support efforts that would result in limiting expensive medical treatments for dying patients, on the ground that society would benefit more by allocating money and resources to individuals who could continue to serve the needs of society. Utilitarians might also give less weight to the autonomous choices of individual patients and might support rules of resource allocation that limit medical treatments for all dying patients.
The right of patients to make their own decisions at the end of life is also supported by the professional ethics of health care providers. According to the World Medical Association (2005), “the right to decline medical treatment is a basic right of the patient and the physician does not act unethically even if respecting such a wish results in the death of the patient.” In the United States the American Medical Association (1996) agrees that the “principle of patient autonomy requires that physicians respect the decision to forego life-sustaining treatment of a patient who possesses decision-making capacity.”
Physicians also have an ethical obligation to provide palliative care, care focused on relieving symptoms and reducing pain rather than on continuing any attempt to cure the patient’s underlying disease (Stevens and others, 2006). Palliative care presents an ethical conundrum, because the administration of drugs to control pain can also cause some patients to die more quickly than they would otherwise have died. Does this mean that the physician who attempted to relieve the pain has killed the patient? Medical ethics handles this conundrum by distinguishing between intent and foreseeability. One opinion expressed in the AMA’s Code of Medical Ethics recognizes that physicians have an ethical duty to relieve the suffering of their patients, and that in some cases such duty includes even “palliative sedation to unconsciousness” (American Medical Association, 2008). In the same opinion the AMA gives this warning to physicians: “Palliative sedation must never be used to intentionally cause a patient’s death.” However, another opinion in the AMA’s Code of Medical Ethics clarifies that physicians’ ethical duty to relieve suffering and advance the interests of their dying patients “includes providing effective palliative treatment even though it may foreseeably hasten death” (American Medical Association, 1996). Thus, under the principles of medical ethics in the United States, physicians may prescribe or administer drugs that can reasonably be expected to make their patients die more quickly, so long as the physicians intend only to relieve suffering and do not intend to cause death.
The American Medical Association (1996) includes artificial nutrition and hydration in the category of life-sustaining treatments that patients may decide to forgo, treating artificial nutrition and hydration as a type of medical treatment, in the same category as ventilation equipment or chemotherapy. In contrast, Catholic authorities have taken the position that nutrition and hydration is not a type of medical treatment that can be withdrawn at will but rather is part of basic care, like cleaning a patient and avoiding pressure sores (Graham, 2010). In addition to explaining religious doctrine to Catholics, such official Church positions are binding on health care facilities operated by the Catholic Church, and apply to all patients who are treated in those facilities, regardless of those patients’ own religious beliefs (United States Conference of Catholic Bishops, 2009, pp. 4, 11–12). In 2009, the United States Conference of Catholic Bishops issued a new edition of the Ethical and Religious Directives for Catholic Health Care Services. Directive 58 of that edition provides as follows:
In principle, there is an obligation to provide patients with food and water, including medically assisted nutrition and hydration for those who cannot take food orally. This obligation extends to patients in chronic and presumably irreversible conditions (e.g., the “persistent vegetative state”) who can reasonably be expected to live indefinitely if given such care. Medically assisted nutrition and hydration become morally optional when they cannot reasonably be expected to prolong life or when they would be “excessively burdensome for the patient or [would] cause significant physical discomfort, for example resulting from complications in the use of the means employed.” For instance, as a patient draws close to inevitable death from an underlying progressive and fatal condition, certain measures to provide nutrition and hydration may become excessively burdensome and therefore not obligatory in light of their very limited ability to prolong life or provide comfort [United States Conference of Catholic Bishops, 2009, p. 31, footnotes omitted].
The directives also make it clear that Catholic health care facilities will not comply with patients’ requests about life-sustaining procedures when those requests are contrary to positions of the Church. Under these circumstances the ability of patients to decline the use of nutrition and hydration might depend on the ownership of the health care facilities in which they are treated. It is also interesting to note the way in which discussion of these ethical issues can be influenced by the use of particular language or terminology (Tucker and Steele, 2007). The AMA, for example, describes this type of nutrition and hydration as “artificial,” whereas the Catholic authorities describe it as “medically assisted” (American Medical Association, 1996; United States Conference of Catholic Bishops, 2009, p. 31).
If health care providers are willing to follow the wishes of a patient, how do they know what the patient wants? Put another way, how do health care providers know which specific life-sustaining measures a patient does want and which ones he or she does not want? Adult patients who are mentally competent and able to communicate can simply speak for themselves about their specific desires. In some cases, patients who are no longer competent or able to communicate will have expressed their desires previously in a written advance directive. An advance directive is a “tool for persons to state preferences and name a surrogate decision maker in case they become mentally incapacitated later in life” (Teno, 2004, p. 159). One type of advance directive is the living will, in which individuals can list the treatments that they would want and those they would not want in the event they are ever in a particular medical condition. Another type of advance directive is the health care power of attorney, sometimes referred to as the durable power of attorney, in which individuals can designate someone to make medical decisions on their behalf under specified conditions.
The evidence from empirical research, however, raises serious doubts that advance directives actually have an effect on the care patients receive (Fagerlin and Schneider, 2004, pp. 36–37). Among other practical problems, individuals often do not know what types of medical interventions they would really want if they were to become seriously ill at some time in the future and were no longer competent to make life-or-death decisions (Fagerlin and Schneider, 2004, pp. 33–34). Although many ethicists support the use of advance directives, many patients who are poor or uninsured are concerned about getting enough medical care, rather than avoiding too much care (Blackhall and others, 2001, p. 60). Moreover, attitudes in the United States about the use of advance directives differ among racial, ethnic, and cultural groups, with African Americans, Hispanics, and Asians being less likely than others to use advance directives. It is likely that the lower use of advance directives among African Americans results in large part from cultural values and a distrust of the health care system that is the continuing legacy of systematic discrimination (Searight and Gafford, 2005).
If a patient is incompetent and has made no advance directive, the patient’s interests might be represented by a surrogate decision maker, such as the patient’s spouse, another family member, or a guardian. The surrogate might try to make the decision that the surrogate believes the patient would have been most likely to make, or alternatively, a decision that the surrogate believes to be in the best interest of the patient. Of course, both of those standards are extremely subjective.
In some circumstances physicians should not comply with the decisions of the surrogate for an incompetent patient. Principles of medical ethics in the United States provide that a physician should ordinarily comply with a decision of a surrogate but not if the physician believes that decision to be inconsistent with the patient’s preferences or not in the best interest of the patient (American Medical Association, 1996). In particular, physicians might disagree with a surrogate or family member about whether treatment of a patient has become futile or whether to continue intensive treatment of a seriously ill newborn. In those situations the AMA recommends the use of ethics committees or other institutional procedures to try to resolve disputes between physicians and surrogates or family members (American Medical Association, 1994b, 1997).
According to M. Albar (2007), a scholar in Saudi Arabia, a fatwa has been issued in that country that authorizes physicians to stop resuscitation on the basis of medical criteria, regardless of the wishes of family members. That fatwa provides as follows:
Q.6. If the treating physicians decided that resuscitation will be useless in a certain patient, is it permissible not to resuscitate even though the patient or his relatives asked for resuscitative measures to be carried on?
A.6. If resuscitative measures are deemed useless and inappropriate for a certain patient in the opinion of three competent specialist physicians, then there is no need for resuscitative measures to be carried out. The opinion of the patient or his relatives should not be considered, as it is a medical decision and it is not in their capacity to reach such a decision [Albar, 2007, pp. 635–636].
In a study of physicians who worked in two neonatal intensive care units (NICUs) in India, the physicians disagreed among themselves about whether the parents of seriously ill newborns should even be involved in making decisions about withdrawing treatment from their children. In the context of poverty and low levels of education, some of those parents refused to make decisions and accepted whatever the physicians recommended. As one of the physicians asked, “How do you explain ‘brain-dead’ to a person who does not understand what a ‘brain’ is?” (Miljeteig and Norheim, 2006, pp. 28–29). Thus issues of culture and context can strongly influence the withholding or withdrawal of care.
Is it ethical for physicians and other health care professionals to consider the interests of the patient’s family, other patients, or society at large in deciding whether to withhold or withdraw treatment from a particular patient? Some people would argue that the only relevant factors should be the desires or best interests of the patient. Others would disagree, and opinions on this issue appear to depend, at least in part, on culture and on limitations of health care resources. In the study of ethical issues at NICUs in India, some physicians reported that they considered the effect that continuing treatment would have on other members of the patient’s family, because the high costs of treating that patient could deprive siblings of food and education (Miljeteig and Norheim, 2006, pp. 28, 30). Some of the physicians in that study also pointed out that India is different from Western countries, where financial resources and social safety nets provide a basis for guidelines that may seem unrealistic in resource-poor developing countries (p. 28). Miljeteig and Norheim (2006) explain that view as follows:
Western doctors and literature focus on issues like the quality of life, over-treatment, the child’s future and suffering in decision making in neonatology. Our informants put little weight on these considerations when encouraged to talk about ethics in neonatology. They focused less on the individual child, more on the consequences for others when treating or not treating the child. They knew their decisions would influence the family’s economy and reputation, the chance of siblings receiving sufficient food and education, other children’s access to the unit’s equipment and resources, and all in the context of a population that was largely indigent [p. 31].
These authors offer a blanket characterization of Western ethical views; however, there appears to be a significant difference between the views of physicians in Europe and physicians in the United States. A study in ten European countries of physicians who work at NICUs found that a majority of these physicians in all these countries considered the burden on a patient’s family to be a relevant factor in deciding whether to withhold or withdraw treatment from a seriously ill newborn (Rebagliato and others, 2000, p. 2454.) In contrast, in the United States, the ethical principles of the AMA do not even mention the burden on the family as a relevant factor in making these treatment decisions, saying instead that the “primary consideration for decisions regarding life-sustaining treatment for seriously ill newborns should be what is best for the newborn” (American Medical Association, 1994b). The U.S. approach thus appears to be different from the attitude in many European countries, although it may be problematic to compare self-reported attitudes in Europe with written ethical opinions in the United States. Moreover, the AMA’s use of the phrase “primary consideration,” which is not defined in the AMA’s Code of Medical Ethics, might provide an opening in the United States for consideration of some secondary factors, such as the burden on the family, after considering the best interest of the individual patient.
Assisting Patients in Committing Suicide
In evaluating the ethical arguments about helping patients to die, it is important to begin by clarifying the terminology and definitions. Different writers use the same terms to mean very different things. Moreover, as Kathryn Tucker and Fred Steele (2007) have noted, particular language, such as euthanasia and physician-assisted suicide (PAS), can be used to influence discussion of these controversial issues (pp. 309–313). According to Tucker and Steele, the term physician-assisted suicide is “inflammatory,” “pejorative,” and “an inaccurate, value-laden term that colors the discussion” (p. 312).
Some people use the term euthanasia to refer to situations in which a physician actually administers a lethal drug, and use the term physician-assisted suicide to refer to situations in which a physician provides a drug that the patient self-administers (Pickett, 2009, p. 335). In contrast, Beauchamp and others (2008) use the term euthanasia to refer to causing the death of someone who is terminally ill or suffering intolerably, whether the death is caused by active means, such as lethal injection, or passive means, such as not taking action to prevent death (p. 398). Beauchamp and others also use the term physician-assisted suicide to refer to death with the help of a doctor, whether the patient is terminally ill or not terminal but suffering intolerably. Löfmark and others (2008), in their survey of physician experiences in six European countries and Australia, combined the terms euthanasia and physician-assisted suicide into a single category that included prescribing, supplying, or administering lethal drugs.
In light of this disagreement among experts, this chapter will try to facilitate discussion of the ethical issues by not using the term euthanasia at all. In addition, this chapter will use the term physician-assisted suicide to refer to helping a patient to die, either by administering a lethal drug or by providing a drug that the patient self-administers. Moreover, even though the term physician-assisted suicide refers explicitly to physicians, it is important to recognize that a request by a patient for help in dying also presents ethical dilemmas for nurses, allied health professionals, pharmacists, and the managers of health care institutions. The term physician-assisted suicide is used for convenience but with the understanding that the ethical issues are not limited to doctors of medicine.
Is it ethical for physicians or other health care professionals to help their patients to die? The ethical principle of autonomy supports the right of patients to make their own decisions about life and death. As Ronald Dworkin wrote, “every competent person has the right to make momentous personal decisions which invoke fundamental religious or philosophical convictions about life’s value for himself” (Dworkin, 1997, p. 41). In addition, John Arras (1997) has described other arguments for PAS on the basis of mercy, the utilitarian goals of increasing happiness and reducing unhappiness, and the duty of physicians to reduce suffering (pp. 365–366). A principlist might characterize some of those latter arguments as part of the ethical duty of beneficence.
In response, some people argue that killing is simply unethical, and others argue that even if nonphysicians can ethically participate in assisted suicide, members of the medical profession should not (Arras, 1997, pp. 367–368). The World Medical Association (2005) has declared explicitly that PAS is unethical. Although some U.S. physicians disagree, the AMA has taken the position that PAS “is fundamentally incompatible with the physician’s role as healer, would be difficult or impossible to control, and would pose serious societal risks” (American Medical Association, 1994a).
The difficulty of controlling PAS is often expressed as a problem of the “slippery slope” (Beauchamp and others, 2008, p. 401), and both Dworkin and Arras have described two separate slippery slope problems that might arise in the event that PAS were to be allowed (Dworkin, 1997, p. 41; Arras, 1997, pp. 368–373). These problems can be thought of as the theoretical slippery slope and the practical slippery slope (Dworkin, p. 41). The theoretical slippery slope refers to the difficulty of limiting PAS to those groups of people for whom it would be appropriate. Proponents of PAS usually argue for a right to PAS only for mentally competent and terminally ill adults. In addition, some people would add the limitation that the patient must be in unbearable pain. However, as Arras has correctly pointed out, the rationale for PAS is based on autonomy and mercy, and that rationale could be applied to other groups of patients as well (p. 369).
The practical slippery slope refers to the difficulty of enforcing any regulations that might be established in order to prevent abuse in individual cases. If PAS were to be allowed, governments would adopt regulations to make sure that each individual request for PAS was voluntary and that there was no other reasonable alternative for that patient. However, Arras (1997) expressed serious doubts that governments could really ensure that all requests for PAS would be voluntary or that all other alternatives would be explored, especially for poor and minority patients (p. 371). Arras also worried about coercion by family members, physicians, or insurance companies, as well as the inability of many physicians to diagnose and treat clinical depression (pp. 371–373). Although Arras recognized that PAS might be justified in some specific cases, he described the controversy over allowing PAS as posing a “tragic choice” in which either alternative would result in “victims” (pp. 386–387). Therefore, Arras argued in favor of retaining current prohibitions against PAS while making major changes in methods of care for dying patients (pp. 365, 387–388).
In contrast, Dworkin (1997) argued in favor of allowing PAS and reasoned that under a system of regulated PAS, with prerequisites of palliative care, poor patients would have more access to care than they have at the present time (pp. 41–42).
More of them could then benefit from relief that is already available—illegally—to more fortunate people who have established relationships with doctors willing to run the risks of helping them to die. The current two-tier system—a chosen death and an end of pain outside the law for those with connections and stony refusals for most other people—is one of the greatest scandals of contemporary medical practice. The sense many middle-class people have that if necessary their own doctor “will know what to do” helps to explain why the political pressure is not stronger for a fairer and more open system in which the law acknowledges for everyone what influential people now expect for themselves [Dworkin, 1997, p. 41].
Finally, Dworkin (1997) has disputed the distinction between the act of performing PAS and the omission of withholding life support and passively allowing a patient to die, commenting that “such suggestions wholly misunderstand the ‘common-sense’ distinction, which is not between acts and omissions, but between acts or omissions that are designed to cause death and those that are not” (p. 42). If it is ethical to withhold or withdraw life support with the intent of causing death, it is also ethical to provide or administer a drug with a similar intent.
For several years, Oregon was the only U.S. state that permitted physician-assisted suicide, but the State of Washington began to permit PAS in 2009 (Yardley, 2009), and the State of Montana has taken a limited step toward permitting PAS (Johnson, 2009). Some other countries, particularly in Europe, have been more flexible about allowing PAS. These differences among countries in attitudes and practices regarding PAS facilitate cross-cultural comparisons on this complex ethical issue. In addition, these differences create an incentive for some patients to cross national borders, in order to obtain assistance in dying that they could not obtain in their home countries. For example, in a somewhat bizarre form of medical tourism, some individuals have traveled to Switzerland for help in dying, in what has been described as suicide tourism (Ball and Mengewein, 2010).
The excerpt from an article by Löfmark and colleagues that follows describes a survey of physicians in six European countries and Australia that looked at their experiences with decision making at the end of life. These authors found important differences among physicians in the various countries in their experiences with and attitudes on end-of-life issues.
Excerpt from “Physicians’ Experiences with End-of-Life Decision-Making: Survey in 6 European Countries and Australia”
By Rurik Löfmark and Others
Background
…End-of-life decisions (ELDs) include decisions about withholding or withdrawing potentially life-prolonging treatment and about alleviation of pain or other symptoms with a possible life-shortening effect. In some countries it is also permissible to make decisions about euthanasia or physician-assisted suicide (EAS), defined as the administration, prescription or supply of drugs to end life at the patient’s explicit request.
ELDs occur throughout the world, albeit at different rates for different actions….
Methods
In each country, a random sample of 300 physicians was drawn from the professional registers of specialties in which physicians frequently attend to dying patients…In addition to background characteristics and palliative care education, physicians were asked about: their attitudes, intended behaviour and practices concerning end-of-life care; communication with terminally ill competent patients and their families; and experiences of making ELDs. The ELDs were described as neutrally and factually as possible in order to avoid differences in interpretation. EAS, for instance,…[was] formulated as “administering, prescribing or supplying drugs with the explicit intention of hastening the end of life on the explicit request of a patient”….
For each country, the percentage of physicians who had (a) performed an ELD, (b) never performed an ELD, but would be willing to do so under certain conditions, (c) never performed an ELD and would never do so and (d) ever received an explicit request from a patient to administer, prescribe or supply drugs with the explicit intention of hastening death are presented….
Discussion
There are differences between physicians in the countries under study regarding experiences with ELDs, willingness to perform ELDs and frequency with which requests for EAS are received. In general, physicians in Italy have least experience with these issues, followed at some distance by Sweden, while physicians in the Netherlands have the most experience. Foregoing treatment and alleviation of pain and symptoms by intensifying medication to a level which risks hastening death are accepted by physicians in all countries, since only a small minority have never performed them and would never do so. These are also the ELDs that were found to occur most frequently in the first EURELD (death certificate) study….
Although reasons for the differences between countries can only be speculative, in the Netherlands the reason that physicians have more experience with ELDs may be a more liberal tradition and higher respect for patient autonomy. A religious influence is not evident, as Belgium, with a substantial Catholic population, has the second highest experience with ELD, and Sweden, which is a Protestant country, has the lowest together with Italy, a Catholic country. Denmark, which also has a Protestant population, is closest to Belgium. The results do indicate that a non-religious philosophy of life seems to increase the willingness to perform EAS, possibly out of respect for patient autonomy….
Physicians can only perform EAS when a patient requests it. Physicians in all countries receive euthanasia requests, most often in the Netherlands, where physicians also have most experience with performing EAS.
The results show that physicians with training in palliative care are more inclined to make ELDs. While this may be expected for some of the ELDs, it is somewhat surprising for EAS. One hypothesis may be that palliative care physicians develop a higher attention to patients’ wishes. Further research is needed to clarify and explain this finding.
Furthermore, the findings indicate that the legislation and medical guidelines are reflected in physicians’ experiences. In all countries, physicians had the highest experiences of non-treatment decisions and alleviation of pain and other symptoms with possible life-shortening effect: kinds of ELDs, which are legal in all participating countries. The fact that experiences of continuous deep sedation, which is legal in all countries,…[are] relatively low, demonstrates that this ELD is more strongly influenced by situational factors such as uncontrollable pain and symptoms than by legal regulations. The different legal regulations concerning EAS are also reflected in physicians’ experiences. Shortly before this study was performed, the Netherlands and Belgium changed their legislation, in 2001 and 2002, and now permit EAS under certain conditions. In the Netherlands EAS are regulated as two possible end-of-life options. In Belgium the law only regulates euthanasia. In both countries the patient involved must be a mentally competent adult when requesting help. Doctors can only proceed when they know the patient well enough to be able to assess whether their request for euthanasia is voluntary and well-considered, whether the patients’ medical situation is without prospect of improvement and whether the individual’s suffering is unbearable. The ability to refuse a request for euthanasia guarantees a doctor’s freedom of conscience in both countries. Whether this has influenced experiences and attitudes remains to be studied in Belgium. For the Netherlands, the evaluation of the euthanasia law showed that the incidence of EAS decreased from 2.8% in 2001 to 1.8% in 2005.
In Switzerland, assistance in suicide is allowed provided that the person seeking assistance has decisional capacity and the person assisting is not motivated by reasons of self-interest; euthanasia is forbidden in all circumstances. Experiences with ELDs can be associated with two types of factors. One is the opportunity the physician has for making ELDs. The second is the attitude of the physician towards questions about philosophy of life, e.g. whether people have a right to decide to hasten the end of life and whether physicians should always aim at preserving life. Older physicians may have been practising medicine longer and thereby have an increased chance of ever having performed an ELD. Further, the number of terminal patients attended to by the physician within a given time period varies from one specialty to another. However, since having had palliative care training is positively associated with having experience with all ELDs, independent of the number of terminal patients under the physician’s care, this factor probably reflects an attitude. Female physicians have less experience with ELDs, which does not seem to be related to opportunity and attitude. A similar finding comes from Italy, where male anaesthesiologists had greater experience with foregoing treatment. However, the reason is not obvious and ought to be studied in the future.
Conclusion
In conclusion, there are differences between countries in experiences with ELDs, in willingness to perform ELDs and in receiving requests for EAS. Foregoing treatment and intensifying alleviation of pain and symptoms are practiced and accepted by most physicians in all countries. Physicians with training in palliative care are more inclined to perform ELDs, as are those who attend to higher numbers of terminal patients. Thus, this seems not to be only a matter of opportunity, but also a matter of attitude….
Source: Excerpted from “Physicians’ Experiences with End-of-Life Decision-Making: Survey in 6 European Countries and Australia,” by R. Löfmark and others, 2008. BMC Medicine, 6(4), [http://www.biomedcentral.com/1741-7015/6/4] (citations, references, tables, and some text omitted). Copyright 2008, Löfmark et al.; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited
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