Module 11: Terminal Illness
Upon completion of this module, the resident should be able to:
- Describe the evolution of dying and death in the United States over the last century or so.
- Enumerate the findings of the landmark SUPPORT study and describe the significance of these as well as the findings from other studies for the quality of dying and death in the United States.
- Identify the foci and goals of palliative and hospice care.
- Describe the ethical controversy surrounding the practice of palliative sedation.
- Describe the consensus and controversial ethical "principles" that apply to the care and treatment of patients with serious or terminal illness.
- Describe and evaluate "opposing" positions on the question of whether medical futility can be defined and, if so, how.
Module: 11 / Decision Making in the Care of Patients with Serious or Terminal Illness
Mrs. Janeway is suffering from stage IV renal carcinoma with metastases to the pancreas, lungs, and bowels. She has respiratory distress that is unresponsive to the usual pain management regimens. After an especially difficult night, she asks you to “do anything you can do” to help her escape her suffering.
Mr. Allen is a 37-year old Caucasian male with stage III testicular cancer with metastases to the liver and the brain. The brain metastases have had an adverse effect on his cognition and decisional capacity. He has executed no advance directives. His wife is insistent: she wants you to find and initiate another course of chemotherapy in an effort to arrest the further spread of the disease. In your judgment, however, Mr. Allen’s condition is such that he cannot withstand another round of chemotherapy, and you are reluctant to comply with her demands, especially in light of the evidence that suggests the ultimate benefit would be slight.
In an alternative scenario: Mr. Allen’s wife asks that her husband be transitioned to comfort and palliative care. As a resident caring for Mr. Allen, you believe this to be the right thing to do, but your attending wishes to convince Mr. Allen’s wife to authorize chemotherapy with a recently developed, still experimental agent. You have grave doubts about the clinical judgment of the attending, who rarely concedes the need to transition a patient to comfort and palliative care.
The theme of this module, decision making in the care of patients with serious or terminal illness, is a broad one—so much so that a more selective focus on key issues is needed. After surveying the theme and placing it in historic and demographic context, the module will analyze the ethics of (1) palliative care, (2) withholding and withdrawing life-sustaining treatment and the “problem” of futility, and (3) assisted suicide and euthanasia.
No analysis of the ethical challenges of caring for patients with serious or terminal illness can begin without acknowledging the profound changes that have transpired in the human experience of morbidity and mortality over the last century in the United States and other parts of the developed world. One hundred years ago, infectious disease and accidents ranked high among the principal causes of death, which usually occurred quickly and in the context of home and family. Our forebears had a more intimate knowledge and experience of dying and death than we do today—we, who are more likely to die of such chronic conditions as heart disease, degenerative neurological disorders, and cancer, often after prolonged periods of illness and, more often than not, in a hospital or nursing home facility. In its comprehensive report, Approaching Death: Improving Care at the End of Life, the National Academy of Sciences’ Institute of Medicine offered an empirically detailed “profile” of dying and death in the United States:
- Approximately 2.5 million people die in the United States annually, compared with a yearly birthrate of approximately 3.9 million
- Since 1900 the death rate has declined significantly, from about 1,720 deaths per 100,000 to 503.7 deaths per 100,000
- In 1900, the average life expectancy was less than 50 years at birth; nearing the end of the 20th century, the average life expectancy was nearly 76 years. This increase is largely due to reductions in child and infant mortality. These statistics, however, obscure significant racial differences: for example, African American men and women do not fare as well as Caucasians in terms of death rates and average life expectancy.
- As already noted, around 1900, such infectious diseases as influenza, tuberculosis, and diphtheria were the leading causes of death in the United States, while heart disease, stroke, and cancer were the fourth, fifth, and ninth respectively. By 1995, heart disease, cancer, and stroke had come to account for 62 percent of all deaths and 67 percent of all deaths in the population of those aged 65 years and older. The dynamics of mortality are quite different for children, however: unintentional injuries, cancer, congenital abnormalities, and homicide are the leading causes of death in the population of those between the ages of 1 and 14 years.
- One of the more profound shifts in the dying and death has been the locus of this inevitable process. Around 1900, the usual setting was the home. By the midway point of the 20th century, approximately half of all deaths occurred in institutional settings (i.e., general as well as more specialized hospitals and nursing homes). In the beginning of the 1990s, statistics revealed a pattern that continues to hold for today: about 57 percent of deaths occur in hospitals, 17 percent in nursing homes, 20 percent at home, and 6 percent elsewhere. On the surface, these statistics conceal interesting differences; for example, there are considerable age- and geography-related differences in the locus on death.
Advances in basic and clinical science, along with ongoing technological innovation, have enhanced the potential for more effective treatment and care for patients suffering from serious and terminal illness. But this undeniable progress has been coupled with—perhaps even overshadowed by—the persistence of problems. This was the overall finding of one of the most systematic, comprehensive investigations of the experiences of this patient population ever conducted in the United States or throughout the world. Launched in 1989 in five major academic teaching hospitals, the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT) was designed and implemented with the aims of improving decision making for the seriously or terminally ill and of improving the process of dying. SUPPORT had two phases: the first was a two-year prospective observational study involving approximately 4,300 patients and the second was a two-year controlled clinical trial involving 4,800 patients, randomized (along with their physicians) to an intervention group and a control group. The observations from the first phase were sobering: they documented the degree to which the care and treatment of this patient population is often marred by poor communication between patients and families, on the one hand, and physicians and other caregivers, on the other hand; by a reliance on “high-tech,” aggressive and intensive treatment; and by ineffective pain management. Only 47 percent of physicians were aware that their patients wished to avoid cardiopulmonary resuscitation (CPR); 46 percent of the do-not-resuscitate orders were written within two days of death; 38 percent of the patients who died during the study spent at least 10 days in an intensive care unit; and the family members of 50 percent of conscious patients who died in hospital reported that their loved ones suffered moderate to severe pain at least half of the time. In phase two, several interventions (including the provision of repeated estimates of patient survival to the attending physicians, along with outcomes data on CPR, and a specially trained nurse to improve communications, mutual understanding between patients and clinicians, care planning, and pain control) and their effectiveness was assessed. With every one of the key parameters, the interventions yielded no significant improvements in the quality of care for the seriously or terminally ill. (The complete citation for the report of the study is: The SUPPORT Principal Investigators. A controlled trial to improve care for seriously ill hospitalized patients. The study to understand prognoses and preferences for outcomes and risks of treatments. The Journal of the American Medical Association. Vol. 274. No. 20. November 22, 1995.) Almost ten years later, these findings were echoed in a study by Teno and colleagues at Brown University and the University of Massachusetts. They conducted a comparative evaluation of the dying experience in home and in such institutional settings as nursing homes and hospitals and surveyed the family members of nearly 1,600 deceased patients, more than two-thirds of whom died in an institution. The bereaved family members of these patients reported that the dying processes of their loved ones were plagued by poor symptom management, concerns about communication with physicians and about decision making, and deficits in emotional support and respect for patients and their families. (Teno JM et al. Family perspectives on end-of-life care at the last place of care. The Journal of the American Medical Association. Vol. 291. No. 1. January 7, 2004.)
Why these deficiencies in the quality of care persist is a question with exceedingly complex answers. The dissatisfaction of patients and their families may be due, in part, to unrealistic expectations (concerning what physicians and medicine can achieve) and to fears about mortality—after all, American culture has been described as “death-denying” by some observers. But such factors do not and cannot account for all of the phenomena reflected in these as well as many other empirical studies. Some observers cite the curative emphasis of specialty-based American medicine and an alleged aversion to comfort and palliative care; the emphasis on knowledge mastery and technical skill—rather than interpersonal and relational skills—in medical education and training; the depersonalization that is rife within the often sterile, bureaucratically organized settings of a modern teaching hospital; and physicians’ own reluctance to deal straightforwardly with dying and death. There is truth in each of these partial explanations. There is hope, as well, in the initiatives that many professional groups within medicine (and nursing) have launched to improve the quality of care for the seriously or terminally ill. In a December 1999 report sponsored by the Milbank Memorial Fund, Christine K. Cassell and Kathleen M. Foley described “an emerging consensus among the specialties of medicine” on several core principles for the care of patients at the end of life:
- Respect the dignity of both patient and caregivers
- Be sensitive to and respectful of the patient’s and family’s wishes
- Use the most appropriate measures that are consistent with patient choices
- Encompass alleviation of pain and other physical symptoms
- Assess and manage psychological, social, and spiritual/religious problems
- Offer continuity (the patient should be able to continue to be cared fro, if so desired, by his/her primary care and specialist providers
- Provide access to any therapy which may realistically be expected to improve the patient’s quality of life, including alternative or nontraditional treatments
- Provide access to palliative care and hospice care
- Respect the right to refuse treatment
- Respect the physician’s professional responsibility to discontinue some treatments when appropriate, with consideration for both patient and family preferences
According to a 1990 report of the Institute of Medicine, “palliative care seeks to prevent, relieve, reduce, or soothe the symptoms of disease or disorder without effecting a cure. Palliative care in this broad sense is not restricted to those who are dying or those enrolled in hospice programs. It attends closely to the emotional, spiritual, and practical needs and goals of patients and those close to them.” Thus, the hallmarks of palliative care are its orientation to the relief of suffering, the effective management of all symptoms, improvement in the quality of life, integration of psychosocial and spiritual care, and support for the family. It is important to remember here the difference between pain and suffering: strictly defined, pain is an unpleasant sensation caused by actual or potential tissue damage; suffering is much broader and refers to the existential experience of anguish, of threatened integrity and identity. Thus, palliative care has an explicit psychosocial dimension incorporating and addressing the multiple impacts of illness on individuals and their families.
In recent years, specialists in palliative care have made significant strides in establishing the discipline and specialty and advancing its knowledge base, but evidence, anecdotal and otherwise, suggests that that within the acute care setting, there are still well entrenched tendencies to view palliative care as a “last resort” to be utilized only if and when the patient’s condition is clearly terminal. In addition to being patently incorrect, such biases can deprive patients with serious illness of the benefits of palliative care, when this approach to care is integrated within the patient’s plan of care. The failure to recognize and capitalize on the potential for beneficial synergies between palliative and other modes of treatment in patient care is one factor underlying the widespread problems with pain management in American hospitals today. These problems were central to the background and the rationale for the U.S. Supreme Courts June 1997 decision rejecting a constitutional right to assisted suicide but affirming the right to adequate, effective palliative care.
Because palliative care is important in the management of serious as well as terminal illness, it is not, therefore, synonymous with hospice care, which is a modality at the center of a “movement” in modern health care—a movement launched by Dame Cicely Saunders, who founded St. Christopher’s Hospice in 1967 in the United Kingdom. The first hospice in the United States was established seven years later, in 1974 in Connecticut; today, there are more than 2,500 hospices in the country. Although there are free-standing hospices, as well as hospices that are components of other institutions (primarily nursing homes), as a “total” philosophy and program of care, hospice can be provided in the context of the home. Usually provided by interdisciplinary teams of specialists in palliative care and by volunteers, hospice care focuses on the physical, emotional, and spiritual needs of terminally ill patients and their families and does not involve reliance on cure-oriented therapeutic interventions. In the United States, hospice care is a reimbursable Medicare benefit, provided the patient meets the eligibility requirement of having a prognosis of 6 or less months to live “if the disease runs its normal course.”
The ethical justification for palliative and/or hospice care is unproblematic: if the central, overriding obligation of the physician is to provide a right and good healing action for the patient, tending to the physical, emotional, psychosocial, and spiritual needs of the patient is integral—indeed, essential—to healing. Today, in contemporary health care and medicine, the challenge is in changing institutional cultures that are too often narrowly focused on the cure and management of disease rather than the care—in the fullest and most profound sense of that word—of patients.
There is, however, one technique in palliative medicine and care that is somewhat controversial and in need of ethical explication. It is the technique of palliative sedation. Palliative sedation involves the administration of sedatives to induce a state of unconsciousness in terminally ill patients whose symptoms are resistant to amelioration and control—for example, intractable pain, respiratory distress, … It is a technique of last resort and should be utilized only when all other alternatives have been tried without success. Palliative sedation is often employed, even when there is a likelihood that its use will hasten the patient’s death. The acknowledgement of that likelihood is, for some critics, a concession to the claim that the line separating palliative sedation from euthanasia—i.e., the deliberate, intentional killing of a suffering patient—is quite blurred. Defenders of the practice, however, often rest their case on an appeal to the principle of double effect. Rooted in Catholic moral theology, the principle of double effect begins with an observation from daily life, that is, that an action can have both good and bad effects or outcomes. In light of the principle, however, such an action is ethically or morally justified, if and only if it meets four criteria. First, the action itself must be a good—or, in the least, a morally neutral—action: providing medication to relieve suffering and pain would qualify under this first criterion. Second, the bad effect cannot be the means to the achievement of the good effect: with palliative sedation, a hastened death is not the means to relief; the medication is. Third, the bad effect must not be intended: with palliative sedation, the intent—the only ethically legitimate intent—is to relieve pain and suffering. Fourth and final, the rationale for seeking the good effect must be serious and sound: palliative sedation is only appropriate, as noted, as an effort of last resort, undertaken with the aim and intent of ameliorating intractable suffering and pain. There are skeptics, however, who argue that the reasoning involved in the conception and application of the principle of double effect is specious; and among such skeptics are advocates of assisted suicide and/or euthanasia, to which we now turn.
Should physicians actively, directly participate in—contribute to—the dying and death of another human being? This question has bedeviled the medical profession for millennia, but especially so in the last two decades or so. In the late 1980s, some of the legislatures of the 50 states began to entertain proposals to legalize physician assisted suicide and in 1994, the state of Oregon became the first in the country to do just that. Repeatedly challenged by federal authorities and finally implemented in 1997, the Oregon Death with Dignity Act has provided the legal basis for physician participation in 246 patient suicides (from 1997 through 2005). Although in its landmark 1997 decisions on the issue, the U.S. Supreme Court ruled that there is no constitutional right to assisted suicide, it left the door open to the states to enact legislation legalizing the practice. The surge of public (and legislative) interest in assisted suicide (as well as euthanasia) is a product of many complex forces, but there can be little doubt that central among the causes is widespread fear of a lingering, painful death in high-tech intensive setting of an institution; in light of SUPPORT and other studies of the care and treatment of the seriously or terminally ill, it is difficult to dismiss such fears as baseless.
Any ethical analysis of these practices must first ensure clarity in these terms. Together, assisted suicide and euthanasia refer to aiding or causing a suffering person’s death. With assisted suicide, an individual provides the means to another individual who implements those means: the provider—of, for example, a medication of a lethal nature or in a lethal dose—is usually a physician but he or she may be a nurse or other professional or even a layperson. With euthanasia, the physician, health professional, or layperson directly kills the suffering person. Euthanasia may be ethically analyzed further, by distinguishing between involuntary and voluntary euthanasia with the latter reserved for situations in which the suffering patient has requested and consented to this form of “aid in dying.”
The scholarly and popular literature on the ethics of assisted suicide and euthanasia is vast, but it is possible to distill the arguments for and against these practices—albeit with the acknowledgement that serious engagement with the reasoning on each side requires both in-depth reading and study. It is important to keep in mind at the outset that advocates of assisted suicide are not always in favor of euthanasia as well; critics of assisted suicide, however, tend to be foes of euthanasia as well. Many advocates of assisted suicide have argued that it should be an option for the terminally ill—an option grounded in the same respect for autonomy that undergirds the well established ethical precepts concerning informed consent and refusal of treatment by patients with decisional capacity. Moreover, in the legalistic language of rights, advocates of these practices argue that under certain circumstances requests for assisted suicide should be honored as exercises of the right to privacy and self-determination.
Other proponents of assisted suicide and euthanasia deploy different ethical justifications for these practices. For example, some argue that with the terminally ill and especially those who are subject to intractable pain or suffering, these practices are entirely consistent with beneficence—with seeking the patient’s good in the broadest sense of that word and ensuring that he or she is protected from the harms of such suffering or pain. Reasoning in a similar vein, some proponents go on to argue that these practices are, in the circumstances of a patient’s unrelieved pain or suffering, compassionate and merciful.
Foes of assisted suicide and euthanasia contend that respect for autonomy, along with the right to privacy and self-determination, is ethically valid only within certain boundaries—and that these practices lie beyond these boundaries. Some point out that the terminally ill can hardly be described as autonomous in the usual sense of that word—that indeed, illness always results in some diminishment of autonomy and terminal illness is, if nothing else, a state of dependence. Similar observations are lodged against the claim that requests for assisted suicide are exercises in the right to privacy: such requests and any positive response to fulfill such requests have profound implications for others. As for beneficence and compassion, opponents of assisted suicide and euthanasia usually appeal to the argument that active, direct or even complicit participation in acts of killing or assisted killing are utterly at odds with the inherent aims and ends of medicine as a profession and with the authentically compassionate behavior. Being fully present to the dying and tending to their multiple physical as well as non-physical needs (as well as to the needs of their intimates) are the marks of compassion from this perspective. In addition, some critics of assisted suicide and euthanasia argue that involvement in these practices would be morally corrosive to physicians and other health professions; that they provide an “easy out” especially in the context of the culture of contemporary health care, which is not well organized for, or oriented to the needs of the dying.
It is perhaps not only interesting but necessary to pause and ask what are the motivations behind patient requests for “aid in dying”? Several empirical studies have attempted to answer this question. In general, the findings are that patients who make these requests are, indeed, asking for help but the plea is one usually rooted in fear—fear of psychosocial and mental suffering, of loss of control, of indignity, of becoming or being a burden to caregivers. Of course, actual physical pain and suffering are also prominent among the motivators and so, too, is depression. As for how to respond, the simple fact of the matter is that, in the United States, with the exception of the state of Oregon, assisted suicide is illegal and euthanasia, in any form, is illegal throughout the country. Thus, some have argued that the only legally, clinically and ethically appropriate way to respond to requests for aid in dying is (1) to clarify the request, asking what it is that the patient is seeking; (2) to assess the underlying causes of the request; (3) to affirm your commitment to care for the patient and to educate him or her about the legally and ethically valid choices available; (4) to address the root causes of the request—that is, seek to improve pain management, treatment for depression, reassurance for fear, and, by all means to be a compassionate presence in the dying process.
Three previous modules—module 6 on valid decision making, module 7 on surrogate decision making, and module XX on advance care planning and advance directives—provided an overview of the developments, in clinical ethics and the law, that have led, in this country, to the establishment of several “consensus” principles:
- Every patient with decisional capacity has the right to consent to or to decline any intervention (diagnostic or therapeutic) recommended by a clinician
- The lack or loss of capacity does not, in and of itself, cause a patient to forfeit this right
- If an incapacitated patient’s wishes are known, either through a written advance directive or through oral directives, then those wishes must be respected and honored
- Principles 1 through 3 apply whether or not a patient is “terminal” and they apply to all forms of medical treatment, including artificial hydration and nutrition, cardiopulmonary resuscitation, ventilation, dialysis, antibiotics, etc.
There are, however, several issues that remain highly controversial, if not unresolved. One is the question of who makes decisions—and on what basis—for patients who lack decision making capacity and have not left or provided “clear and convincing” evidence of their wishes? This question was, in part, at play in the case of Terri Schiavo, the Florida woman who had been diagnosed as being in a persistent vegetative state and whose husband sought to have her feeding tube withdrawn.
Two other interrelated issues provoke controversy on a day-to-day basis, usually in the intensive care units of the country’s leading academic health centers and both revolve around the troubled concept of medical futility:
- Do patients and surrogate decision makers have a “right” to demand treatment that clinicians are reluctant to provide, for example, because of the alleged futility of that treatment?
- Conversely, do clinicians have a “right” to limit (medically futile) life-sustaining interventions without the informed consent of the patient or surrogate?
These questions have also spawned a now vast and growing scholarly and popular literature, much of it devoted to answering the questions beneath the questions: Is futility a coherent concept and can it be defined? If so, how is it to be defined? And, who has the power to define medical futility in the concrete circumstances of the care of this patient? At the risk of oversimplifying the state of the debate over these controversial questions, respondents tend to cluster around two poles. On the one end are those who argue that medical futility may be difficult to define but definable it is and that the core of the definition is a relatively objective, clinical determination of the efficacy of an intervention in achieving the legitimate aims or ends of medicine—that is, cure, restoration of function, or amelioration of pain and suffering. At the other end are those retort that the benefits provided by allegedly futile interventions can only, ultimately, be assessed as such by patients and their surrogates because of the inevitably subjective nature of “benefit.”
In their book, Wrong Medicine: Doctors, Patients, and Futile Treatment (Baltimore: Johns Hopkins University Press, 2000), Lawrence Schneiderman and Nancy Jecker present a sustained argument on behalf of the first polar position. They contend that medical futility should be applied to interventions that have little or no likelihood of achieving a therapeutic benefit for the patient. Moreover, they contend that medical futility has both quantitative and qualitative dimensions. In its quantitative dimension, medical futility entails an estimate of the probability that an intervention will be effective; if the intervention in question has not worked in the last 100 similar cases, it is not likely that it will work with this patient. As for qualitative medical futility, Schneiderman and Jecker stipulate that a patient must have the capacity to appreciate the benefit of the therapeutic intervention and that the intervention should release the patient from preoccupation with his or her illness and render him or her capable of achieving other life goals. In the concrete circumstances of the treatment and care of a particular patient, if a given intervention is judged, on these grounds, to be futile, what should clinicians do? It is arguably the case that physicians have never been, and are not now obligated to provide treatments that they deem to be ineffective in achieving the legitimate goals of medicine. Schneiderman and Jecker, however, consider the interesting question of whether physicians are obligated not to provide futile treatments. They imagine three possibilities. With the first, physicians would be allowed to refrain from providing futile treatment, but no obligated to do so; the illustrative analogy here is the practice of abortion (which physicians may refrain from offering to their patients). The second possibility—which stipulates that physicians should be encouraged, but not obligated to refrain from providing futile treatment—has an added element of moral persuasion. The third possibility envisions a somewhat more clear-cut duty or obligation: with it, physicians should be obligated to refrain from providing futile treatment—just as, by analogy, they are now obligated to provide care to patients with HIV, despite the controversies (and arguments against such a duty) that emerged in the early days of the AIDS epidemic.
The opposing, polar position—that is, the argument that judgments of futility are unavoidably subjective and that the benefits provided by allegedly futile treatments can only be assessed as such by patients or their surrogates—is presented by bioethicist Susan Rubin, Ph.D., in her book, When Doctors Say No: The Battleground of Medical Futility (Bloomington, IN: Indiana University Press, 1998). In brief, Rubin develops two claims against the sort of view expressed by Schneiderman and Jecker. On the matter of so-called qualitative futility, she maintains that patients and surrogates are far better qualified than clinicians to determine the “meaning” and “value” of a particular intervention—after all, meaning and value, in this respect, are always relative to the unique life plans and projects of unique individuals. As for quantitative futility, Rubin maintains that clinical judgments of effectiveness by physicians are always inflected with value assertions and that they are, as a result, far from objective.
Are these two polar opposites the only paths to resolving the problem of medical futility? Before directly addressing this question, it might be useful to identify the motivations that commonly lead patients and surrogates to request or demand futile treatment—and some clinicians to provide such treatment. Empirical and anecdotal evidence suggests that such demands on the part of patients or their surrogates are often a product of misconceptions or faulty reasoning—for example, that the only loving or right thing to do is “to do everything (medically) possible.” Such psychological factors as denial and guilt are often the impetus to such demands, as are unrealistic expectations about the ultimate reach of medical knowledge, technology, or skill. Some hold religious convictions about the sanctity of human life and believe that in deference to that sanctity everything should be done to prolong life. Others may interpret clinician reluctance to provide futile treatment as a lack of concern for the patient’s best interests and may, out of distrust, make such demands; still others reveal a kind of entitlement mentality that sees compliance with such demands as a form of respect for the autonomy of the patient.
Some of these same motivators are at work in clinician insistence on providing futile treatment. Some physicians are “therapeutic enthusiasts” who are willing to “push the envelope” of an intervention’s effectiveness. Others may have underlying issues with denial and guilt or may have strong religiously-based convictions, as well, about the sanctity of life. It is also quite common for physicians to provide futile treatment as an exercise in defensive medicine: to avoid the ever-looming threat of litigation, they comply with patient or surrogate demands for futile treatment.
It may be useful, as well, to highlight the often-made observation that the futility conflicts that often preoccupy ethics committees and ethics consultants these days rarely arise “out of thin air,” as it were: in many (if not most) cases, such conflicts have taken root in the fertile ground of persistent, chronic miscommunication or poor communication between clinicians and patients and their families; there is often a lack of advance care planning and thus no ongoing process of reviewing the goals of care and of evaluating both implemented and possible interventions in light of these goals. Effective communication and advance care planning are not failsafe, prospective solutions to the problem of medical futility but they are strategies integral to quality end of life care.
Back to the question of whether there is not some middle way between the opposing extremes represented by Schneiderman and Jecker, on the one hand, and Rubin on the other hand. In previous modules, the argument has been made that clinical decision making in the physician-patient relationship (indeed, within the context of team-delivered care) is ideally shared decision making that privileges neither clinicians nor patients but instead reckons with the complexity of factors necessarily involved in any judgment about what should or should not be done with the aim of healing patients. It is in the light of this ideal that the following “relational algorithm” is offered as a means of illustrating the contributing roles of clinicians and patients and their surrogates in decisions about whether or not to withdraw or withhold an allegedly futile treatment. The “algorithm” has three “variables”:
- Effectiveness: This variable centers on an assessment, by the physician, of the capacity of the treatment to alter the natural history of the disease; this is an objective determination by the physician and depends upon evidence established through scientific and clinical studies. There is a more narrow sense of effectiveness—i.e., the effectiveness of an intervention or treatment in providing a reliable substitute or support for failed or impaired organ function, e.g., a respirator for the lungs, or dialysis for the kidneys. Effectiveness in this relational algorithm is effectiveness in the broader sense: the question at play here is will this intervention reverse the course of disease?
- Benefit: This variable requires an assessment of the value—that is, the desirability of the effect—of an intervention or treatment by the patient or his or her surrogates.
- Burden: Although both of the preceding variables are complex in their own rights, this variable embraces a variety of parameters for assessment, including the costs of the treatment and the pain or inconvenience associated with its use. There are both “subjective” and “objective” aspects to these parameters—hence, the need for both clinician and patient (or surrogate) involvement.
Seeking guidance and help from your institution’s ethics committee or medical director, determine what your institution’s policy on futile treatment is. How does your institution’s policy define “futility”? Determine how often and in what situations that policy has been invoked, if possible. What resources (for example, ethics consultation or mediation) are available in your institution to facilitate resolution of futility conflicts?
Joan Teno and her colleagues at Brown University have been pioneers in the empirical study of caring for patients with serious or terminal illness and in the development of tools for improving such care. Much of the fruits of their labor is available at: http://www.chcr.brown.edu/pcoc/toolkit.htm and http://www.chcr.brown.edu/pcoc/resourceguide/resourceguide.pdf.
The Medical College of Wisconsin maintains an excellent resource, End-of-Life and Palliative Education Resource Center, at: http://www.eperc.mcw.edu/. Especially useful are the “fast facts and concepts” on a wide range of topics in end of life care.
Because pain is unavoidably subjective phenomenon, it is often difficult to measure. A series of illustrations, charts, and numerical scales for surmounting this impediment can be found at: http://painconsortium.nih.gov/pain_scales/index.html.
The website of the Center for the Advancement of Palliative Care can be found at: http://www.capc.org/.
The Department of Pain Medicine and Palliative Care at Beth Israel Hospital has a website with a wide range of resources, including online continuing medical education, in pain medicine and palliative care. It can be found at: http://www.stoppain.org/.
A brief but comprehensive on-line course in end of life care for physicians can be found at: http://endlink.lurie.northwestern.edu/.
The comprehensive report of the New York State Task Force on Life and the Law, When Death Is Sought: Assisted Suicide and Euthanasia in Medical Context, is available at: http://wings.buffalo.edu/faculty/research/bioethics/WDIS.html.