Objectives: Upon completion of this course the student will have an understanding of the moral, legal and ethical issues facing clinicians dealing with end-of-life issues.
Those who treat patients
approaching the end of life often face moral, ethical, and legal issues
involving shared decision making, futility, the right to refuse medical
treatment, euthanasia, and physician-assisted
The principal problem involves the appropriate use of technology at the end of life. While developments in technology have enhanced our ability to prolong life, issues have also arisen regarding the resulting quality of life, the sometimes marginal benefits to our patients, and the burdens that this technology imposes on patients, families, and society.
Legal and ethical issues continue to confront patients, courts, and physicians. A better understanding of these issues and an awareness of the availability of effective palliative care will help physicians, patients, and families adequately address the end-of-life issues that are an intrinsic part of medical care.
From an ethics point of view, the patient is the one to decide about forgoing life-sustaining interventions, based on the third ethical principle - patient autonomy. The principle of autonomy, or respect for persons, has its roots in analytic philosophy and has become synonymous with the concept of self-determination. This concept was expressed well by Justice Cardozo in a famous medical malpractice case: "Every human being of adult years and sound mind has a right to determine what shall be done with his own body." The principle of autonomy lies at the root of the medical and legal doctrine of informed consent and also at the root of decisions by patients to forgo life-sustaining treatment at the end of life.
The fourth ethical principle is that of distributive justice, which guides the fair allocation of medical resources. Justice considerations arise in end-of-life care when one compares the high cost of marginally beneficial end-of-life care to the lack of funding for the basic care of a large portion of our country's residents. While the issues surrounding medical costs and the design of just health care systems are complex and important, they require a social policy level approach and should not be left simply to the physician at the bedside. The principle of justice is mentioned to set it apart from end-of-life ethics decisions at the bedside. In the current climate of increasing desire for a dignified death, if a better job were done of honoring patients' wishes to forgo expensive life-prolonging intervention, then both justice and autonomy would be served.
In cases where patients have lost their capacity but had indicated in an advance directive that they did not want life-prolonging procedures, courts have ruled that their advance wishes should be followed. In situations where there is no written advance directive and the patient lacks decision-making capacity, courts have articulated standards for proxy decision making. This means that an individual other than the patient assists in decision making for the patient. The courts have reasoned that the loss of capacity to exercise the right to refuse treatment does not entail the loss of the right itself. They have further reasoned that in order to prevent the right from being extinguished in a practical sense, another person must exercise the right on the patient's behalf.
In cases where patients have expressed their wishes prior to losing capacity, the proxy decision makers should follow those wishes rather than make their own judgment about what to do. This is referred to as "substituted judgment" because the proxies substitute the patients' prior judgment about treatment matters for their own. This is not only an important legal concept, but also one that has practical application in counseling proxy decision makers at the bedside. Many proxies feel uncomfortable in deciding to forgo life-prolonging interventions because they see themselves as deciding between life or death for another person. The actual role of the proxy, however, is not to make the decision but to help carry out the patients' wishes. This is relatively easy when the patient has taken the time to complete an advance directive. In such cases, the proxy's role is often to clarify the interpretation of vague statements in the directive and to help craft the details of the patient's palliative care plan. Matters can become more difficult when the proxy must recall past oral statements by the patient about how he or she would want to be cared for in an end-of-life or terminal situation.
In cases where the patient has never communicated thoughts about end-of-life care or has never had the capacity for such thoughts, the proxy cannot make a substituted judgment since no prior judgment by the patient exists. Despite this, one early court case strained to apply the substituted judgment standard in deciding whether to authorize chemotherapy to treat leukemia in a 67-year-old never-competent man with an approximate mental age of 2. Most courts, seeing the illogic of basing decisions on the imagined choices of the never-competent, have rejected this approach as misguided. They have instead adopted the "best interest" standard of proxy decision making. This standard simply requires the proxy to make the decision that is in the patient's best medical interest. It is not the proxy's decision alone; it is a process of shared decision making with the attending physician.
A patient's right to refuse treatment, whether exercised directly or by proxy, is not an absolute right. Many state courts have identified four social interests that must be balanced against a person's right to be free of unwanted medical intervention. These are the preservation of life, the prevention of suicide, the protection of third parties, and the preservation of the ethical integrity of the medical profession. In most treatment refusal cases, these state interests are not found to outweigh a competent adult's right to refuse unwanted medical intervention. However, in some cases, the right to refuse treatment is overridden. An example of this is a court-ordered blood transfusion to save the life of a single-parent Jehovah's Witness who would leave minor children as wards of the state if life-saving transfusion is withheld. In cases such as this, many courts have held that the state's interest in protecting the children outweighs the parent's right to refuse unwanted transfusion, even though the reason for refusing is based on a deeply held religious belief.
Medical futility concepts can be organized as follows: The first division of futility is divided into the categories of post-hoc futility and predictive futility. In post-hoc futility, treatment has been tried and has failed. We see in retrospect that a treatment that perhaps held out some hope has proven to be futile. Post-hoc futility is useless for those who want to use futility as a reason not to try a treatment in the first place. Predictive futility, on the other hand, involves predicting that a treatment will be futile and therefore should not be tried.
Predictive futility can be divided into several types: conceptual futility, probabilistic futility, physiologic futility, and doctor-patient goal disagreements. Conceptual futility is futility based on a particular concept or definition, the example being brain death. The medicolegal concept of death holds that ventilator-dependent patients who have suffered "irreversible cessation of all functions of the entire brain including the brain stem" are dead. In such cases, the ventilator is by definition a futile intervention because it cannot bring the patient back to life. While "brain death" has become a medicolegal standard in the United States, some have voiced religious objections to the standard. Because of this, at least two states have passed laws allowing a "religious exemption" to the brain-death standard. Apart from religious reasons, cases have occurred where family members simply do not accept that their "brain-dead" loved one is in fact dead. In these cases, the law would allow physicians to discontinue the ventilator without family permission. In practice, however, despite the fact that continued ventilator use is conceptually futile, time is usually given to the family to come to terms with the patient's death before the ventilator is removed.
Probabilistic futility means that a treatment with a very low chance of success can properly be regarded as futile. For example, some would call a 1% chance of surviving CPR as futile CPR. This kind of futility is never absolute, and it entails making value judgments about what risks are worth taking. Because of this, physicians should not make unilateral futility judgments because their values may not reflect those of the patient. Instead, the information should be communicated to the patient, and a process of shared decision making should be followed.
Physiologic futility comes in two forms. The first is called medical nonsense; the second is medical impasse. An example of medical nonsense is a patient's request for antibiotics to treat a viral upper-respiratory infection. In this case, the physician can unilaterally refuse to give antibiotics on the ground that antibiotics are a futile intervention. There is no possibility of benefit, while potential for harm remains. Medical impasse occurs when a person's illness makes it physiologically impossible for sensible treatments to work. An example of this is a person with AIDS and pneumocystis pneumonia who develops adult respiratory distress syndrome. If such a person were to suffer cardiac arrest, ordinarily CPR would be a sensible and indicated response. However, in the case where the infection has proven refractory to all available treatments and where gas exchange has become critically impaired and is worsening, CPR cannot possibly be effective. Once acidemia and ischemia produce cardiac arrest, it is physiologically impossible for CPR and cardiac medication to restore vital air exchange. Thus, there is medical impasse and absolute physiologic futility. In such a case, a physician can unilaterally decide not to perform CPR on the ground of medical futility.
The last futility concept is doctor-patient goal disagreement. In the case of Helga Wanglie,[14,15] a ventilator-dependent patient in a permanent vegetative state, the physician regarded the ventilator as futile because it could not improve and thus benefit the patient. The patient's husband, however, did not see the ventilator as futile because it was keeping his wife alive. In this case, we have a disagreement between two different goals. The ventilator could not meet the physician's goal of health improvement, but it could meet the husband's goal of life prolongation. In such cases where value differences exist about what goals are worth pursuing, the decision should be a shared one between the doctor and the patient (or the patient's proxy). The physician would not be justified in making a unilateral decision to discontinue the ventilator. On the other hand, the physician who believes that continued ventilation would be morally objectionable is free to preserve his or her moral integrity by withdrawing from the case.
The counter to this concern is to regard the ventilator as an optional form of external support. While the ventilator does sustain life, it is clear that a person who wishes to forgo it has the right to do so. An unambiguous example is that of an irreversibly incapacitated, terminally ill patient who had earlier prepared an advance directive stipulating that mechanical ventilation should not be used if his or her capacity was irreversibly lost and if the disease was terminal. If these criteria are met before the need for ventilation arises, then the ventilator should not be started. On the other hand, if the ventilator was started before the patient became terminal and irreversibly incapacitated, the ventilator should be discontinued once these conditions have been clearly met. In discontinuing the use of the ventilator, the physician is not causing death but is appropriately removing a form of external medical support that the patient refused in advance. The natural forces of the patient's illness continue unopposed once the ventilator is removed, and quite predictably, the patient dies. The patient's death is caused by the disease rather than by the physician.
Physician-assisted suicide is a form of voluntary euthanasia that is legal in the state of Oregon. In Oregon, a physician can prescribe a lethal amount of medication for a patient so that the patient can commit suicide with the medication if he or she so chooses. It is a form of voluntary euthanasia because the physician agrees to participate in a plan to cause the patient's death and supplies the lethal medication that is used to cause death. In voluntary euthanasia, as defined above, the physician acts alone to terminate the patient's life, whereas in physician-assisted suicide, the physician and the patient act together to cause the patient's death.
The Hippocratic Oath, to which American medicine has traditionally appealed for its moral bearings, expressly prohibits physician-assisted suicide and euthanasia. The oath reads, "Neither will I administer a poison to anybody when asked to do so, nor will I suggest such a course." It is telling to note that during the time of Hippocrates, when medicine's power to effectively treat disease and ameliorate suffering was far less that it is today, assisted suicide and euthanasia were regarded as radically incompatible with physicianhood. This at least suggests that those is favor of physician-assisted suicide and euthanasia have very different ideas about physicianhood and the moral limits of medicine. It is also telling that the public interest in physician-assisted suicide comes at a time when the palliative powers of American medicine are greater than they have ever been before. This suggests that perhaps the public is significantly unaware of the advances and availability of palliative medicine or that palliative care it is woefully underutilized. While this is no doubt the case for some portion of the public, others in our society wish to have physician-assisted suicide and euthanasia as options along with the benefits of palliative care. The chief argument for this is based on autonomy, but it is an argument that begs the question of whether it is proper for a physician to play an active role in causing a person's death via lethal doses of medication.
In euthanasia and physician-assisted suicide, the core ethical issue for medicine is the rightfulness or wrongfulness of a physician intending and acting to cause the death of a patient. Unfortunately, this issue is easily obfuscated. An example of this occurred in Quill v Vacco, one of two recent federal appellate court cases that argued for a right to hasten death.[18,19] The Quill opinion argued that a person has a right to hasten death but that laws prohibiting physician-assisted suicide prevent the equal exercise of this right. This can be illustrated with an example involving two similarly situated patients. Patient A has terminal lung disease and is on a ventilator, while patient B is terminal with AIDS and is not on a ventilator. According to the Quill court's logic, patient A is able to hasten their death by directing that the ventilator be discontinued, while patient B cannot hasten their death because the law regards physician-assisted suicide as a crime. The court concludes that laws prohibiting physician-assisted suicide were unconstitutional because the laws set up an inequality in the law.
The reality is that there never has been a right to hasten one's death, but a right to refuse unwanted medical intervention has been recognized. Patient A exercises the right to refuse unwanted intervention by directing doctors to discontinue the ventilator. Similarly, patient B exercises the right to refuse unwanted intervention by deciding not to go on a ventilator in the first place. The Quill court's view that patient A is hastening death by discontinuing the ventilator shows that they do not understand the difference between killing and allowing to die. Furthermore, in suggesting that discontinuing the ventilator hastens death, the court implies that patient A's ventilator has somehow become intrinsic to patient A. The reality is that the ventilator is a form of optional external medical support. The decision to discontinue its use is not a decision to hasten death but a decision to cease forestalling it. Failure to make careful distinctions about killing and allowing to die and about hastening and forestalling death add to the confusion surrounding the physician's role in end-of-life care.
If physician-assisted suicide is regarded as a right, it will very likely be extended to incapacitated patients in order to avoid the practical extinguishing of their rights. However, since the patient will not be able to exercise it, proxy decision making would be utilized. Also, since the incapacitated patient cannot participate in physician-assisted suicide, it will become the physician's act alone. Thus we will have moved to euthanasia. Still further, if this right is extended to the case of the incapacitated terminal patient who left no past wishes, as it has been in the case with the right to refuse treatment, then we will have legalized nonvoluntary euthanasia. Proxies and physicians will then be making euthanasia decisions because it is deemed in the patient's "best interest" to be dead. The fact that such potential exists in our legal system, which judges cases and advances law by ruling on precedent, should give us pause. Alternatively, the current effectiveness of palliative care in addressing the full spectrum of end-of-life issues leaves us with no good reason to throw open the door of euthanasia that Oregon has left ajar. Efforts should instead be put toward optimizing the use of palliative care and making it available to all who need it.
IntroductionThe prospect of death can elicit a broad range of emotions, from fear or fascination to redemption or eternal damnation. For the average layperson, these ruminations can occur from a safe vantage point where death is conceived of as an abstraction; as a concept that will eventually, perhaps in the very distant future, become a reality. The medical professional, however, bears witness to this phenomenon in the context of his or her everyday life. The healthcare professional cannot merely ponder death, but must share his or her environment with it. Yet, despite this familiarity with death, there is little data documenting how well clinicians administer end-of-life care, and the small body of literature that is available is often conflicting and open to interpretation.
Pain Control and SedationAccording to Thomas J. Prendergast, MD, of Dartmouth-Hitchcock Medical Center in Lebanon, New Hampshire, there is a dearth of data surrounding end-of-life care as well as numerous studies that proffer opposing conclusions. The much publicized and often maligned Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT) concluded that patients experience pain while enduring a poor and often protracted dying process. A 1995 Trauma/ICU study suggested that a patient's individual perception of pain is difficult to quantify and, even with the best intentions and training, physicians are not always attuned to the palliative needs of their patients. It was reported that 95% of physicians surveyed in this study declared their patients had adequate pain control, whereas only 74% of patients considered their pain to be well managed. Still other studies suggested that patients are actually overmedicated at the end of life, which raises the specter of euthanasia or, at the very least, the prospect of physician-assisted suicide. Notwithstanding these discrepancies, there is a growing consensus in the medical community suggesting that end-of-life care, management of pain, sedation, and the moderation of the dying process itself can be dramatically improved for the benefit of patients, families, and clinicians. It is the clinician's obligation, then, to draw from what ought be done from expert opinion regarding end-of-life care and integrate it into daily practice.
Administering End-of-Life CareDeborah J. Cook, MD, of St. Joseph's Hospital in Hamilton, Ontario, Canada, suggests that the traditional technological stance of sustaining patients simply because the interventions were available is gracefully transitioning into a multidisciplinary focus with emphasis on quality of life in relation to each individual's unique biography. That said, it follows that ministering to the various needs of dying patients must be addressed effectively. Once clinicians accept that death is not a personal failure, they can switch from their curative goal to an aggressive palliative posture. Whether clinicians always succeed in providing adequate end-of-life care remains unsupported by peer-reviewed data, yet the methodology for achieving it is largely undisputed.
Accommodating the Dying PatientA peaceful, private, low-stress environment with ample visitation and little or no extraneous hardware is considered optimal for the dying patient. Vickie Spuhler, of LDS Hospital in Salt Lake City, Utah, advocates that the particular location should be, to the maximum extent possible, discretionary to patients and families. This facilitates a greater sense of control in an otherwise chaotic and potentially terrifying experience. Ever mindful that patients are individuals, it is important to consider their specific needs. For example, a person without family should not be isolated in "privacy," as this may be interpreted as a form of abandonment. Every effort should be made to personalize and cater to the dying patient's diverse requirements. In addition, Dr. Cook speculated, the titration of the dying process is more important than dwelling on medication dosage, as comfort, not rigorous standards of dosage protocol, is of paramount concern. Titration specifically implies a continuum of medication given to relieve pain and discomfort even though it may hasten death. Caregivers are not only permitted to give "enough" palliation to ameliorate discomforting symptoms, they are mandated to as long as their primary intent is palliation and not to facilitate death in and of itself. This is ethically justified under the "Principle of Double Effect."
The various types and species of physical pain and discomfort must be explored and perceived accurately. The subjective sensation of "suffering," however, is a human experience that may not necessarily be ameliorated by "medication." Some would argue that suffering should not be completely eradicated because blunting this unique emotional component may deprive patients of the metaphysical aspects of the dying process. Cultural and social mores must be respected, and the need to find meaning and make sense of mortality may well be within the parameters of the palliative care plan devised by the clinician. These existential concerns must be embraced as part of the end-of-life care process so that the patient is not reduced to the uni-dimensional concept of a "disease" and the popular misconception of "pulling the plug" does not define an otherwise multidimensional process.
These strategies may be employed seamlessly, and one may wonder why all the fuss, since these suggestions seem like common sense practices that ought to be easily implemented. Unfortunately, in far too many instances, there are families who progress into a state of conflict when their loved one has reached the end of life, thus making these proscriptions difficult. If healthcare professionals know how to best deal with end-of-life issues, it will do them little good if they cannot get to this point in tandem with patient and family; that is, if the communication catalyst is absent. Denial, grief, anger, and hostility may permeate the environment for all involved. Thus, it may be impossible for the clinician to implement an effective palliative plan without first recognizing that patient and family expectations and understandings are adequately explored. A family kept continually apprised and informed will be better prepared for decision making than a family who is given perfunctory information. Medical decision making is impossible without accurate information processing; hence, it is inexcusable to withhold information from patients or families simply because a clinician assumes such information is too complex for them to process. Every effort must be made to explain the situation in whatever terminology is necessary in order to foster a working relationship that will lead to the best possible course of action.
Dr. Prendergast maintained that clinicians must train their staff by order of example so they too may effectively communicate with patients and families, thus increasing the odds that they may reach an agreement to deal with end-of-life issues. A glib declaration that a specific treatment is futile and should be discontinued because "it isn't doing any good" echoes throughout some institutions. The balance between what is a medical decision and what is a patient/family decision can explode at this juncture. Too often, clinicians deem things futile that do not fall within the rubric of strict medical futility. Not only will this put patient and family at odds with the staff, it may also engender distrust toward the staff and create a paternalistic environment that leaves patient and family reeling from the loss of control.
Dr. Cook declared that medical decision making and subsequent end-of-life care is best achieved through a hybrid model that considers the medical expertise of the staff, the individual values of the patient, and the needs of the family. A decision made in a vacuum, strictly in light of medical concerns, cheats the patient and family of fully participating in the process.
The concept of futility, which often presents at the end of life, requires further examination since clinicians tend to invoke this term as a blanket justification for ceasing treatment that they may find inappropriate while the family wishes to continue. The maxim is that patients and families may not authoritatively demand futile care, and clinicians ought not provide it. Yet, defining futile care is often subject to interpretation and means different things to different people. Claiming authentic medical futility is a dangerous and often misused argument at the end of life. For the benefit of clinicians, it may be helpful to familiarize themselves with the concept of futility, how it affects medical decision making for the patient and family, and what one's obligations are as a clinician when dealing with authentic medical futility. The ethical theory behind medical futility has 4 components to it:
1) If the treatment violates recognized standards of care or will fail in strict physiologic terms to support hemodynamics of metabolism, then it is considered medically futile and ought not be offered under any circumstances. For example, amputating one's foot to cure an ingrown toenail simply because the patient or family thinks it may be curative is futile and clearly should not be performed, even if it is desired.
2) If a treatment is physiologically effective in staving off death for a "reasonable" amount of time, it may not be considered medically futile. Minutes are not typically considered a reasonable amount of time, so if a treatment works only momentarily, it may be considered futile, but hours or days may be fair game. However, there is no specific time factor that defines reasonable, so it remains problematic, to say the least.
3) When considering medical futility, the quality of life that results from the treatment must be considered. Generally speaking, it is not the caregiver's providence to make quality-of-life determinations. Our society underwrites the patient's conception of his or her own quality of life as authoritative. That is to say that staff members cannot unilaterally decide what quality of life is or is not acceptable for an individual. It is a common perception that "reasonable" people typically do not wish to have interventions that would severely compromise their quality of life, but this maxim cannot be unilaterally imposed by caregivers.
4) If the treatment has an extremely low probability of success, it may be considered futile. Again, this is problematic because quality of life means different things to different people and, therefore, is ill defined. Thus, it does not often hold as strong as the first 2 components above.
Typically, the law tends to favor the first 2 views of futility, as do many ethicists. A vitalist argument can be made that maintaining vital signs at all costs is still life of a sort, and that treatment is not futile if vital signs are able to be supported (even if there is little or no appreciable quality of life to speak of). In the current societal situation, this is not a judgment medical professionals have been given authority to make. It is no longer a medical decision, but a humanistic interpretation reached by individuals, setting apart from the law. If a dying patient would still have wanted "everything done" and the surrogate is authoritatively speaking on his or her behalf, then current medical practice insists the patient should be maintained to the fullest extent possible. This is often the point at which clinicians may mistakenly claim treatments as futile, but personal beliefs and individual values trump such a proclamation. While it may not make imminent medical sense to sustain the patient, it is ultimately their autonomous decision and interventions that sustain vital signs are, by definition, not futile if they define "life" as the sustenance of vital signs. However, if the patient's condition meets the first or possibly second definition of futility above, treatments ought never be offered, least of all supported, even grudgingly.
Making a strong case for futility is difficult under current social, political, and legal traditions, and until the criteria and the public consensus change, this argument may not be one that will be useful but for a handful of instances. Thus, clinicians may be well advised to avoid this pronouncement unless it falls under the aegis of strict medical futility that ought never be offered. Invoking futility is often a lose-lose argument that may alienate the clinician further from the family when, in the end, it is likely that the clinician will have to abandon that position, with many relationships having suffered. Medical decision making at the end of life and the care plans that follow are intimately connected. Clinicians cannot expect to develop a realistic palliative care plan without the full participation of patient and family. This type of cooperative interchange is only fostered through genuine communication and exchange. By examining the individual's values as opposed to examining his or her body, and accepting that what works for one person may not work for another, clinicians will become expert at ensuring that the dying process is as personalized as the patient experiencing it.
- Prendergast TJ. Comfort measures only: care after end-of-life decisions. Program and abstracts of the 30th International Educational and Scientific Symposium of the Society of Critical Care Medicine; February 10-14, 2001; San Francisco, California.
- 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 Treatment (SUPPORT). JAMA. 1995;274:1591-1598.
- Whipple JK, Lewis KS, Quebbeman EJ, et al. Analysis of pain management in critically ill patients. Pharmacotherapy. 1995;15:592-599.
- Hall RI, Rocker GM. End-of-life care in the ICU: treatments provided when life support was or was not withdrawn. Chest. 2000;118:1424-1430.
- Cook DJ. Comfort measures only: care after end-of-life decisions. Program and abstracts of the 30th International Educational and Scientific Symposium of the Society of Critical Care Medicine; February 10-14, 2001; San Francisco, California.
- Spuhler V. Comfort measures only: care after end-of-life decisions. Program and abstracts of the 30th International Educational and Scientific Symposium of the Society of Critical Care Medicine; February 10-14, 2001; San Francisco, California.
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