David B. Waisel
“Death in the ICU is not always preventable and should neither be unduly hastened nor delayed” (1).
Approximately 20% of all deaths in the United States—roughly 500,000 patients annually—occur in, or after a stay in, the intensive care unit (ICU) (2). The principles guiding end-of-life care center on the desire to have patients receive appropriate, carefully chosen, intensive therapy with comfort, dignity, security from fear, and the chance to be with loved ones. Doing this in a technology-driven and death-denying health care system requires incorporating the principles of palliative care throughout the intensive care practice (3,4,5).
A Brief History of End-of-Life Care
The modern history of end-of-life care began with demands of patients to refuse treatments. In 1974, the American Medical Association asserted that “the purpose of cardiopulmonary resuscitation is the prevention of sudden unexpected death. Cardiopulmonary resuscitation is not indicated in cases of terminal irreversible illness where death is not unexpected” (6). Limiting resuscitation in patients with terminal illness was becoming acceptable (7,8,9).
In the renowned 1976 case of Karen Ann Quinlan, the courts upheld the right to refuse potentially life-sustaining care when they permitted the ventilator to be disconnected from the supposed ventilator-dependent Quinlan (10). The Quinlan decision was based on the general constitutional right to privacy. After mechanical ventilation was discontinued, Quinlan lived for nearly a decade, sustained by nasogastric feedings. The 1984 case of Bartling established the right for a competent person to refuse potentially life-sustaining care (11). For 6 months, Bartling, a competent adult patient with an incurable disease, received mechanical ventilation against his clear wishes, declaring, at one point, “While I have no wish to die, I find intolerable the living conditions forced upon me …” (11). Similar in reasoning to Quinlan, the appellate court supported the right of a competent patient to refuse medical treatment based on the constitutional right to privacy.
The 1990 case of Cruzan brought about a crucial change in the right to refuse treatment (12). Several years before an incapacitating accident, Cruzan had expressed to a friend a desire not to live in a state of diminished capacity. Cruzan's surrogates wanted to withdraw treatment, but the Supreme Court of Missouri mandated continued care because Cruzan's informal statements did not meet Missouri's evidentiary standard of “clear and convincing evidence” of a patient's wish to terminate potentially life-sustaining care. The case was appealed to the United States Supreme Court, but unlike Quinlan and Bartling, the Supreme Court grounded the right of a competent patient to refuse treatment in the more powerful liberty interest of the Fourteenth Amendment, which states, “No State shall make or enforce any law which shall abridge the privileges or immunities of citizens of the United States; nor shall any State deprive any person of life, liberty or property …” The decision upheld the rights of states to determine the standards for the level of certainty required, permitting Missouri to use the “clear and convincing evidence” standard, but also permitting other states to use different standards (12,13,14).
Intensive care unit practices may also lead surrogates to demand care for their loved ones. An archetypical case involves Helga Wanglie, an 86-year-old patient in a persistent vegetative state who was receiving mechanical ventilation. The medical center believed that further therapy would be futile for Mrs. Wanglie and wanted to withdraw mechanical ventilation. When Mr. Wanglie refused the medical center request to stop mechanical ventilation, the medical center sought appointment of an independent guardian to supplant Mr. Wanglie as her guardian. The Court declared that Mr. Wanglie was best able to be Mrs. Wanglie's surrogate (15,16).
Competent patients have a right to refuse potentially life-sustaining medical treatment (17). The modifier “potentially” is used before life-sustaining medical treatment to acknowledge that although physicians may believe that a therapy is life sustaining, there is rarely certainty that the intervention will be life sustaining. For the incompetent patient, three hierarchical levels of judgment direct the decision-making process for end-of-life care. The once competent patient's previously expressed preferences for end-of-life care should be followed as is best possible. When the patient's declared preferences are not known, substituted judgment, the surrogate's intimate knowledge of the patient's attitudes and beliefs, may be used to direct care. While these are two distinct categories, both levels require the surrogate to sufficiently know the patient to appropriately choose or interpret the patient's preferences. These standards put significant burdens on decision makers who may have legitimate doubts about the appropriateness of their decisions. When a surrogate has to make decisions for a patient who has never been competent, such as a young child or a mentally disabled adult, substituted judgment is impossible, and the surrogate must rely on the best interests standard. The best interests standard requires the surrogate to make decisions based on the surrogate's view of what is best for the patient.
Advanced Care Planning
Advanced care planning permits patients to declare preferences for medical treatment if they become incapacitated. Respecting these preferences is how physicians honor the ethical principle of respect for autonomy, in which patients have the right to make substantially informed decisions about medical therapy and the resultant trajectory of their lives.
Advanced directives are designed to minimize the likelihood of undesired overtreatment and undertreatment of the patient. Partially as a result of Cruzan, the Patient Self-Determination Act (PSDA) was introduced in 1991 to increase the use of advance directives. The PSDA requires health care institutions—hospitals, nursing homes, and hospice programs—to notify individuals about their rights regarding advanced directives. The two types of advanced directives are living wills and health care proxies; the latter are also known as a durable power of attorney for health care decisions. Although living wills allow patients to declare the extent of desirable interventions, they are often unable to directly address the subtleties that characterize clinical situations. Nonetheless, some generalizations can be made. A willingness to accept highly invasive treatment suggests a willingness to accept less invasive treatment, and a willingness to accept therapy in a more impaired state suggests a willingness to accept therapy in a less impaired state. Similarly, a willingness to forgo therapy in a less impaired state suggests a willingness to forgo therapy in a more impaired state (18). Notwithstanding these generalizations, the difficulty of applying living wills to clinical situations lead some to prefer the greater flexibility provided by the health care proxy, in which the surrogate decision maker can consider the specific details when making clinical decisions. Health care proxies permit patients to designate surrogate decision makers—including nonfamily members—to make decisions for them should they become unable to make such decisions for themselves. If the patient does not assign surrogacy, most jurisdictions have a hierarchy for doing so. Surrogacy is not always effective, particularly for patients who do not make their preferences clearly known to the surrogate before losing their decision-making capacity (19). Given the strengths and weaknesses of each approach, a combination of the two (a designated proxy with some written form of preferences) may be the best option.
Advanced care documents are only somewhat effective. Typically, advanced directives are inadequately discussed, documented, disseminated, and followed (Table 2.1) (19,20,21,22,23,24,25,26). Inadequate use of advanced directives may be due to concerns about the stability of declared preferences, although about 75% of preferences remain stable over a several-year period (27,28,29). Preferences were most stable when the preference was to refuse treatment, and decisions were about the most and least serious issues (27). A worsening in functional status resulted in a greater interest in refusing care (27). Because preferences tend to trend toward what may be considered conventional preferences, intensivists should be less skeptical of conventional preferences and more curious and inquisitive about unusual preferences (27). Gender and educational level seem to have minimal effect on the stability of preferences (29,30).
Intensivists should not assume that the advanced directive will be an authoritative map of preferences (31). Instead, the advanced directive should be used in conjunction with an ongoing alliance with family and friends to consider future care. Although discussions about end-of-life care in the intensive care unit appear likely to be less successful because of the forced short-term relationship, the frequent, intense meetings to consider end-of-life issues aid in the development of a functional relationship (24). Successful conversations focus on advanced care planning as an ongoing process and are designed to help guide the decision-making of patients and surrogates (32). Discussion of defined questions permit intensivists to highlight the inherent uncertainties of prognostication in medicine and the value of speaking in likelihoods.
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Table 2.1 Why Advanced Directives Fail |
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While competent patients may modify their previously declared preferences, demented patients who previously made an informed choice to limit certain therapy may express an interest in receiving that therapy (33). If a patient manifests evidence of decision-making capacity, such as being able to provide internally coherent reasoning, their wishes to receive therapy should be honored. However, the process of resolving this situation in a patient without decision-making capacity, and with almost no likelihood of regaining decision-making capacity, is more complex. It would be quite easy to simply provide therapy; however, that is unlikely to reflect their true desires if they had the capacity. In this situation, it is better to choose therapy based on multiple sources, including significant others, documentation, and the best interests standard.
Futility
The concept of futile care has undergone several changes over the past decade (34). Previously, attempts were made to define futile care based on a specific percentage of the likelihood of achieving a certain outcome; for example, cardiopulmonary resuscitation is futile when the likelihood of a patient with this disease process being discharged from the hospital is less than 1% with 95% confidence. This approach failed, in large part because it was difficult to know the likelihood of success in the individual patient. Policies based on this approach inappropriately de-emphasized the importance of individual values and preferences such as the willingness to atypically undertake extensive burdens for relatively minor or highly unlikely benefits (35).
A clearer way to think about futility is to delineate treatments that will not accomplish their intended goals from treatments that have a very low likelihood of accomplishing their goals. Thus, in this sense, therapy may be labeled futile when it cannot accomplish its intended specific goal, for example, when mechanical ventilation cannot accomplish pulmonary gas exchange. In this sense, questions about futile care are infrequent.
The ability to resolve differences of opinions about applying treatments with low likelihoods of success is important. Such treatments may be considered inadvisable because of the burden to the patient, cost, or uncertain benefit, but they are not futile. As discussed above, policies based on definitional approaches are hard to apply and do not respect individual values. A policy based on a procedural approach, in which the process for resolving conflict is described, is more practical. Good policies are public, reflect the moral values of the community, and include processes for identifying stakeholders, initiating and conducting the policy, commencing appellate mechanisms, and determining relevant information (35). Discussions about inadvisable treatment should bear in mind qualitative and quantitative considerations. The qualitative aspects define the goals of the treatment, and the quantitative aspects state the likelihood of achieving a defined result. When offering likelihoods of a result, physicians should be clear whether the information used to form the estimation is from intuition, clinical experience, or rigorous scientific studies. Scoring systems useful for population-level predictions should be considered as contributory but not determinative for decision making for individuals.
Recently, Texas has enacted a legislative approach to resolving disputes about appropriate care. Physicians are permitted to unilaterally withhold or withdraw treatments they regard as futile, provided they obtain the agreement of the hospital ethics committee. The impact of this questionable strategy for conflict resolution is being closely monitored (36,37,38).
Care of the Dying Patient
“End-of-life care seems too early until it is too late—too often” (39).
Management of symptoms, pain, dyspnea, sleep, and other distressing physical and psychological symptoms, including depression and discomfort from catheters and suctioning, needs to be integrated into the routine of intensive care (40,41,42). The goal is to provide patients and families the best of intensive therapy and palliative care, because physicians cannot predict which path the patient's course will take. By aggressively providing medical, emotional, psychological, and spiritual care, the patient is more able to focus on decision making and related matters. Poor-quality end-of-life care harms more than just the patient. One third of family members who had relatives die in the intensive care unit had posttraumatic stress syndrome (43).
Good end-of-life care requires successful communication between nurses and physicians to improve patient care and minimize the stress of clinical practice (44). Dissimilar training and experiences of nurses and physicians lead to differences that can hinder communication and collaboration. By virtue of their profession, nurses spend more time with patients and families, take a more holistic view, and may feel more frustrated by conflicting opinions. In the ICU, nurses tend to feel ignored and that their opinions are not respected (45). While physicians tend to think that nurses have a great deal of influence, many nurses would like a more active role in end-of-life decisions (46). Physicians in the United States lag behind those in European countries in terms of involving nurses in end-of-life decision-making. Nurses involved in providing such aspects of care felt greater satisfaction and were more committed to a successfully operating unit (47).
Good-quality end-of-life care also requires effective communication among families and clinicians. In one study, 10% of family members in the ICU believed they received contradictory information, and more than half of family members did not know the roles for each clinician (48). Factors that improve communication among the clinicians and between the clinicians and family include minimizing hierarchy, implementing protocols for multidisciplinary communication, and using team training to improve communication skills and diminish the effects of differences in training (45,49,50,51,52). Extensive communication involving a weekly team meeting, which included a physician leader, a nurse, a chaplain, and a social worker, decreased discord and length of ICU stay, but it did not affect mortality rate (53). Implementing daily medical updates by the intensivist and adding physician support personnel, such as a social worker and a clinical nurse specialist to elaborate and provide further information, decreased length of stay, mortality, and costs (54). Daily goal worksheets requiring active acknowledgment from providers improved understanding of the goals of the interventions and tasks, decreased length of ICU stay, and improved workflow (52). A “proactive end-of-life conference and a brochure” with a focused communication strategy improved the response to bereavement (55). The communication strategy with family members was based on the mnemonic VALUE: “to Value and appreciate what the family members said, to Acknowledge the family members' emotions, to Listen, to ask questions that would allow the caregiver to Understand who the patient was as a person, and to Elicit questions from the family members (55).” Given the variety of successes, it would not be unreasonable to suggest that communication can be improved by simply having a reasonable protocol.
Self-imposed attitudinal barriers affect end-of-life care (Table 2.2) (45,56,57). In Western society, individuals tend to assume immortality while intensive care physicians tend to view death as a failure rather than as a natural end to life (39). Prognostic uncertainty fosters this death-denying attitude. Thus, the most commonly adopted attitude is to hold out for the most beneficial possibility—no matter how unlikely—rather than critically analyzing likely outcomes (39). This view may push physicians to wait for proof of failure of therapy, rather than to instigate timely escalation of palliative care. The “siloing” of surgeons, internists, subspecialist consultants, nurses, and specialty nurses, often with relevant prognostic and treatment information, results in poor communication, to the patient's detriment (39,58).
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Table 2.2 Barriers to End-of-Life Care |
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Race is a barrier to good end-of-life care. Difficulties associated as a member of a minority group include inadequate access to care secondary to finances, geography, and language differences. Family members of African Americans were more likely to report concerns about being adequately informed and were more likely to report financial hardships than whites (59). In addition, due to historical abuses, some African Americans and members of other minority groups may mistrust the health care establishment. This mistrust may lead to family/surrogate decisions, such as the desire to attempt every therapy and to forgo palliative care, that are not necessarily in the best interests of the patient because of the fear that the motivation for suggesting that the patient forego certain therapies is not made in the patient's best interests.
Critical care medicine can improve practices surrounding end-of-life care by viewing it as a clinical state to be studied, with emphasis on legitimizing research, assessing the needs of families of dying patients, providing guidelines-based professional support for withdrawal of care, assessing interventions, and modeling of good end-of-life care (1,60). One of the most influential studies of end-of-life care was the SUPPORT study (61).1
What is defined as good care is often determined by what is measured. The information in this section needs to be tempered with the knowledge that there are issues with measurements used to define quality care. Process measurements, based on whether a task is performed—such as occurrence of multidisciplinary discussions, the frequency of caregiver/family meetings, chaplaincy visits, attendance at unit educational programs, and presence of policies—are easy to measure and collect (62,63). However, isolated process measurements are, at best, indirect measurements of improvements in care, even when there is evidence supporting a process-to-outcome link. Outcome measurements are patient-related results, such as length of stay, patient or family member symptoms, or satisfaction of care (63). Outcome measurements can be misunderstood or too inexact. For example, having fewer days per admission due to inappropriate transfer of patients to the ward is not the same as having fewer days per admission due to improved care. Some outcome measurements—for example, pain management—are hard to characterize and may be reduced to using less reliable surrogate characteristics for interpretation, such as behavioral cues for pain management.
Withdrawal of Care
While ethically equivalent, there is an emotional difference between withdrawing care and withholding care (60). But in fact because withdrawal of therapy permits a trial of the therapy in question, it is superior to the withholding of therapy, because if therapy is withheld, the patient will never know if the therapy could be applied with an acceptable benefit-to-burden ratio. Intensivists are more likely to fulfill a patient's wishes by implementing a trial of therapy and reviewing it at specific intervals for appropriateness (64). A physician's willingness to withdraw therapy is affected by a prediction of poorer cognitive function, a prediction of a less than 10% chance of survival, and patient preferences (1,65).
Practices of withdrawal of mechanical ventilation vary in hope of maximizing patient comfort during this process. Some intensivists prefer a slow terminal wean while others prefer more rapid extubation (66). Either way, neuromuscular blockade should not be initiated after the decision to withdraw life support has been made. Neuromuscular blockade does not provide sedation or pain relief for the patient and impairs the ability of the intensivist to assess the comfort of the patient. Although some may argue that neuromuscular blockade minimizes the trauma to the family witnessing the withdrawal of life support, that argument does not outweigh the potential harm to the patient (67). Explaining to the family the reasons to avoid neuromuscular blockade may make it more tolerable for them to be present through the dying process.
Physicians should aggressively treat discomfort when withdrawing therapy, even if treatment may hasten death. The doctrine of double effect emphasizes the intention of the clinician in cases in which actions may have both good and bad effects. Consider the intensivist seeking to provide comfort to terminally ill patients. Although two possible effects of the opioids are recognized and foreseen—relief of pain followed by respiratory depression—only the good effect, pain relief, is intended, and thus the intensivist is not held morally culpable if respiratory depression and a sooner death should occur (68). If the intensivist uses far more opioids than necessary to make the patient comfortable, or if the intensivist chooses an agent without pain-relieving properties—for example, intravenous potassium—then the intensivist can no longer plausibly claim that the intention was solely to relieve pain and suffering. The doctrine of double effect oversimplifies the concept of intentionality, particularly by assuming that clinical intentions are unambiguous and recognizable to the actor. More important, it centers the justification of the action on the physician's intent rather than on the patient's authorization.
Withdrawal of implantable cardiac defibrillator shock therapy presents an interesting problem for clinicians (69). Painful defibrillations prolong life. In a patient near the end of life, the discomfort of the shocks may no longer be worth the benefit. The continuation of implantable cardiac defibrillator therapy should be based on the benefits and burdens. In one study comparing patients in which one group had the defibrillator turned off and the other group did not, continuing defibrillator therapy did not extend life, suggesting little benefit in exchange for the discomfort of continued defibrillation (69).
Distributive Justice and Rationing in the ICU
Distributive justice refers to an equitable allocation of resources. Distributive justice can be viewed as a substantive request, such as determining a fundamental and inviolable level of health care for all members of a society. Distributive justice can also be viewed as a process for achieving justice, using approaches including queuing and potential benefit to determine valid distribution. These approaches belie simplicity; consider the different interpretations of benefit, such as quality-adjusted life years, functional status, or the fair innings approach, which aims to level the playing field for characteristics such as gender that are not under control of the individual (3,70,71).
Because critical care services account for more than 1% of the gross domestic product in the United States, hospitals, intensive care units, and critical care physicians are under pressure to control costs (72). An argument sometimes made for invoking futility as a reason not to perform a therapy is that futile care is a waste of health care dollars. This statement implies rationing, in that money is a scarce resource that could be better used elsewhere. The Task Force on Values, Ethics, and Rationing in Critical Care defined rationing as the “allocation of healthcare resources in the face of limited availability, which necessarily means that beneficial interventions are withheld from some individuals” (72). Rationing may be viewed more optimistically as a means of using resources wisely to minimize inequities and maximize population health (70).
It is helpful to consider three taxonomic categories of rationing (72). The first is the limited availability due to external constraints, such as not giving a medication that is not on a formulary or diverting ambulances from an emergency department of an overfull hospital. This form of rationing is beyond the physician's control.
A second category of rationing occurs from following clinical guidelines. For example, local hospital policies may define pathways for evaluation of certain diseases, such as requiring a specific radiologic study before proceeding to a more costly study. Rationing from clinical guidelines may also, for example, limit the use of certain antibiotics to control emergence of resistant organisms. Deviations from clinical guidelines should be based on patient characteristics and scientific literature, not on personal idiosyncrasies.
The third category of rationing is based on clinical judgment. Clinical judgment is used when it is unclear how guidelines should be applied or when guidelines do not exist. Clinical judgment is imperfect. Decisions about therapy are influenced by a patient's race, pre-illness employment status, the intensivist's interest in rationing, and the political power of clinical services (73,74,75,76).
For rationing polices to be fair, there should be public access to decision-making policies and rationale, a framework for principled decision making as a means for resolving dispute, and an appeals process (3). When considering rationing, one should recognize the difference between the statistical patient and the individual, or identifiable, patient. Clinical guidelines are developed in reference to the statistical patient, which is the ideal and abstract future patient. It is easier and more proper to discuss rationing for the statistical patient, such as whether society should spend dollars on preventive care, primary care, or tertiary care. When participating in those debates on a macro level, physicians may wish to consider their obligation to their patient community as well as to society as a whole.
Clinical judgment refers to the known individual patient. When faced with an identifiable patient whose situation does not align precisely with guidelines or studies, it is improper for a physician to determine and implement rationing based on distributive justice at the bedside (3). When caring for the individual patient, physicians are required to maximize use of resources while ensuring that care remains focused on patients (3).
Triaging is a special consideration of distributive justice. The utility principle encourages actions that maximize “the greatest good for the greatest number” and is at the heart of permitting unequal outcomes as long as overall health is maximized. It is by this principle that, for example, physicians in the midst of a mass casualty will choose to provide discrete, rapid, and potentially life-sustaining care—chest tubes, tracheal intubation, and so forth—to many patients before devoting these resources to the treatment of a single resource-intensive head injury (77). Implicit in the utility principle is that like patients are treated similarly, without regard to other factors, such as socioeconomic status. The utility principle is suitable for a mass casualty situation in which all patients are equally unknown and no prior relationship with the patient has been established. It may, however, be less suitable for considering distribution of an absolute scarce resource, such as ECMO (extracorporeal membrane oxygenation). In this case, many would suggest that the presence of a patient–physician relationship, current use of the resource, the appropriateness of the claim to the resource, and the idea that every person should have an equal chance to potentially life-sustaining resources should weigh heavily in these complicated balancing-act decisions. It is helpful to have considered relevant factors and a potential process to resolving these dilemmas before confronting them.
Physician-Assisted Suicide, Voluntary Euthanasia, and Physician Aid in Dying
The term physician-assisted suicide means that the physician makes a lethal dose of medicine available to the patient, but that the patient must perform the act of ingestion. The term voluntary euthanasia means that the physician administers the medication directly on a patient's request (78). While there may be a distinction between making the medication available and actually administering it, the distinction may not be ethically significant, as both require effort and contribution from the physician. Similarly, while requiring the patient to perform the final act may protect against abuses, psychological pressure may defeat safeguards inherent in requiring the patient to self-ingest. For purposes of this discussion, unless otherwise specified, voluntary euthanasia and physician-assisted suicide will be considered together and the term physician aid in dying (PAD) used to denote both. Nonvoluntary euthanasia is distinct from PAD and means that the physician administers the medication, but there has been no formal request by the patient. Arguments surrounding PAD center on the interpretations of the principles of respect for autonomy and beneficence, as well as the possible ramifications of legalization (Table 2.3) (79).
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Table 2.3 PAD: Arguments For and Against Legalizing Physician Aid In Dying |
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In European countries that have not decriminalized PAD, surveys indicate that voluntary euthanasia accounted for 0.05% to 0.46% of deaths and nonvoluntary euthanasia accounted for 0.11% to 2.26% of all deaths (80). Patients wished to hasten death when they considered themselves a burden to others, when they worried about suffering and receiving a substandard quality of care in the future, and when they were depressed, hopeless, and without adequate social support (81,82,83).
Some countries have legalized PAD. Although the Dutch had been practicing PAD for several decades, in 1993 the Dutch parliament granted physicians immunity from prosecution, provided that proper procedures were followed (Table 2.4) (84,85). In 2002, PAD was explicitly legalized in the Netherlands. Four nationwide investigations (in 1990, 1995, 2001, and 2005) have been conducted into the Dutch practice of PAD and nonvoluntary euthanasia (86,87,88). The 1990 Remmelink study found that 1.7% of all deaths were as a result of euthanasia. The 1995 and 2001 studies showed an increase in euthanasia as a percent of all deaths to 2.4% and 2.6%, respectively, and in the 2005 study the rate returned to 1.7%. Deaths from assisted suicide decreased from 0.2% of all deaths for the first three studies to 0.1% for the 2005 study. The decreases in the 2005 study may be from epidemiologic changes or the use of other techniques to alleviate symptoms, such as terminal sedation. Deaths from nonvoluntary euthanasia decreased from 0.8% of all deaths in 1990 to 0.4% in 2005. Reporting improved from less than 20% of PAD cases in 1990 to nearly 80% in 2005. In 2005, physicians chose not to report because they did not believe they were ending life (76% of nonreports), because they were concerned about whether criteria had been met (9.7% of nonreports), and because they viewed euthanasia as a private matter between the patient and physician. Nearly all the patients who received PAD appeared to have had a short life expectancy, with approximately 45% of granted requests for euthanasia or assisted suicide having a life expectancy of 1 week.
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Table 2.4 Common Criteria for Patient Eligibility for PAD |
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In 1997, the State of Oregon in the United States legalized the Oregon Death with Dignity Act, which permitted terminally ill patients to receive prescriptions in lethal quantities for the purpose of self-administration. It does not permit any other forms of PAD, such as another person administering the medication. From 1998 through 2006, 292 patients used 456 prescriptions authorized by this law. The most common diseases for patients choosing to ingest a lethal dose of medication were malignant neoplasms (81% of patients), amyotrophic lateral sclerosis (8% of patients), and chronic lower respiratory tract diseases (4% of patients) (89). Of the 23 patients receiving prescriptions in 1998, 21 had used the prescriptions and 2 were alive in 1999 (90). In 2006, 40 physicians wrote 65 prescriptions. Of those 65 patients, 35 used the prescriptions, 19 died of their underlying disease, and 11 lived throughout the year (89). The financial and educational status of patients did not seem to play a role in the request for PAD.
In 2003, Belgium passed a law permitting euthanasia (85). In the first 15 months after passage of the law, euthanasia represented 0.2% of all deaths. This appeared to be a decrease in euthanasia when compared with studies performed in 1998 and 2001 (91).
Interpretation of this information is not straightforward. The consistency of the data from the Netherlands and Oregon indicate that these two societies are not sliding down a slippery slope to increased misuse (92). Another view, however, is that not enough time has passed to see if this slide will occur (93).
Doc, Will You Help Me Die?
In a national survey of U.S. physicians, 18% reported receiving a request for assistance with suicide and 11% received a request for euthanasia (94). The majority of both sets of physicians received multiple requests (94). About 6.4% of physicians honored at least one request for PAD, with their last case split between physician-assisted suicide and euthanasia. In the survey, 4.7% of all physicians had performed lethal injection and 3.3% had participated in physician-assisted suicide (94). For these reasons, it is important for physicians to have a practiced approach to managing patient requests for PAD (95) (Table 2.5).
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Table 2.5 Quality End- of- Life Care |
Depression should be assessed to determine (a) if the patient is able to make rational decisions, (b) whether the depression is treatable, and (c) whether treating the depression would change the circumstances (95). Physicians should explore what patients mean by requesting aid in dying and should overtly focus on patient dignity and comfort. Because patients may request PAD as prevention against future abandonment and suffering, physicians should emphasize that they will be actively involved throughout the end-of-life period (95). Given that survey data indicate that some physicians honor requests for PAD, physicians should clarify their position on participating in PAD for themselves and to their patients.
Ethics Consultation in the ICU
The goals of ethics consultation services are to “protect patient rights, diffuse real or imagined conflicts and cause a change in patient care that improves quality” (96). Ethics consultation can help address treatment conflicts, reduce costs without diminishing quality, and limit inappropriate nonbeneficial or unwanted interventions (97). In a randomized controlled trial, individuals who received ethics consultation in the ICU were not more likely to die than individuals who did not receive consultation (98). ICU ethics consultations proved to be valuable across a range of populations (99).
Much of the information about ethics consultation services in the United States comes from a 2000 survey. Most ethics consultation services use a small group, typically about three people, to perform consults, although some use the full ethics committees or a single individual to perform consults. Various individuals performed ethics consultation, including physicians, nurses, social workers, chaplains, administrators, and lay people. Most ethics consultation services have been practicing between 5 and 10 years. Three common characteristics of ethics consultation services were that they
1. permitted anyone to request an ethics consultation,
2. required notification—not permission—of the patient, surrogate, and attending physician prior to performing a consult, and
3. made recommendations that are wholly voluntary.
Pearls
· Treat patients and families in the manner you would want you and your family to be treated—that is, with respect for personal values, feelings, and preferences.
· Know common approaches and forms for advance directives in your jurisdiction.
· Intensivists should focus end-of-life discussions with surrogate decision makers on what the patient would have wanted, not what they would want for the patient.
· Know local policies regarding dispute resolution.
· End-of-life decision making is a dynamic process requiring frequent reconsideration of therapy and goals and communication among the clinicians, the patient surrogates, and, if available, the patient.
· Attitudes on the unit are infectious.
· Actively root out personal presumptions and biases in health care, and challenge them so they do not affect the care provided.
· Recognize the benefits of trials of therapy in terms of maximizing the likelihood of fulfilling the patient's desires for end-of-life care. It is one thing to presume that the burdens of therapy are not worth the benefits; it is more ethically stout to test that assumption and then withdraw therapy when it is shown that the burdens outweigh the benefits.
· Withdrawing potentially life-sustaining therapy requires active clinical assessment and treatment to minimize harm to the patient and family.
· Just as intensivists seek consultation for diagnosing and treating subspecialty medical problems, intensivists should seek consultation for diagnosing and treating intricate ethical dilemmas.
References
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6. Standards for cardiopulmonary resuscitation (CPR) and emergency cardiac care (ECC). JAMA. 1974;227(Suppl):833–868.
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