End-of-Life Care
Gary S. Francis
Julie Laveglia
Overview
Life in the coronary care unit (CCU) is changing. Once a comfortable “laboratory” for conducting studies of physiology and pharmacology, as well as a bastion of medical education, the modern CCU has become a vastly different place over the course of the last 15 to 20 years. This is particularly true in large, tertiary teaching hospitals. The patients are older and sicker, and they have more multiorgan dysfunction than before. They frequently require multiple-team, interdisciplinary management. Patients who have routine, uncomplicated myocardial infarction continue to be admitted, but many such patients are now well cared for in large suburban hospitals by highly qualified cardiologists. Tertiary teaching hospitals more often receive elderly patients with highly complex conditions who are transferred on day 2 or 3 of acute myocardial infarction complicated by acute pulmonary edema, stroke, refractory ventricular tachycardia, cardiogenic shock, severe mitral regurgitation, ruptured interventricular septum, critical aortic stenosis, acute renal failure, sepsis, or some combination. Such patients can usually be stabilized and their conditions managed, but they not uncommonly languish for days in the CCU, obtunded, unable to be easily weaned from the ventilator. Anxious families understandably become frustrated, and uncertainty about prognosis only serves to further fracture the bond between the medical team and family members.
The dilemma is made worse by the inability of many patients to participate in the decision-making process. Families may be absent. Occasionally, competing interests and desires may emerge among family members. Decisions about the end of life are seemingly more complex in today’s world. Resources are often constrained, and economic pressures exist to reduce the length of stay in the CCU. The overall daily charges for the CCU range from $2,000 to $10,000 per day. To put the economic burden into perspective, it is estimated that critical care costs in the United States are more than $80 billion per year, or approximately 1% of the gross domestic product (1). Of course, the high cost of care is a global problem, certainly not unique to the United States.
The aging CCU patient population, complexity of disease, high prevalence of multiorgan dysfunction, unrealistic expectations of patients and families, and persistence of taboos regarding discussions of the end of life in most cultures mean that physicians who work in the CCU must be familiar with certain guiding principles regarding the withholding and withdrawal of life support systems. The decision to withhold or withdraw life-sustaining support from a critically ill patient is an increasingly difficult but necessary part of providing care in the CCU. The preciousness of human life is embedded in nearly every religion and culture. The natural tendency of every physician is to nurture the patient back to health, and therefore to preserve life without regard to age, cost, or other culturally imposed boundaries. It is clear that in a small number of cases, death is inescapable. In such cases, the wise physician turns attention to the family, while ensuring that the patient is made comfortable. But mostly there are gray zones, in which outcomes are uncertain and decisions about continued aggressive treatments are extremely difficult. Uncertainty becomes champion.
How are these decisions made? Who makes these decisions? What are the ethical principles that underlie these decisions? How does a physician actually withdraw life support? The goal of this chapter is to provide CCU physicians with practical advice that will help to guide them through this difficult process.
Historical Perspective
For many years, the ethical and legal consensus in the United States has been that patients and their surrogates have the right to refuse life-prolonging therapy. This stems from the common law right of self-determination (the principles of autonomy), which was upheld by the U.S. Supreme Court in 1891 (2). Despite agreement on this general principle, dying patients in the United States frequently receive unwanted interventions (3,4). The patient’s right to autonomy, although sacred and carefully guarded, sometimes competes with the staff member’s skill in providing aggressive life-extending treatment. Physicians and nurses are often poorly trained in withholding or withdrawing intensive life support. It is sometimes easier for them to continue aggressive care than to struggle with the difficult decision to withdraw life support. This issue came to a head in the landmark case of Karen Ann Quinlan (1976), and the courts
ultimately forged a legal consensus based on the principle of patient autonomy. This principle establishes the right of patients (or their surrogates) to determine which medical interventions to accept or refuse, even when the absence of treatment results in death. It was affirmed by the U.S. Supreme Court in the case of Nancy Cruzan in 1990. The court acknowledged that patients who die after life support is withheld or withdrawn die of the underlying disease process. Such deaths are not assisted suicides or euthanasia. The courts have also reasoned that the spouse and children are the most appropriate surrogates because they are best positioned to know the patient’s feelings and desires about treatment.
ultimately forged a legal consensus based on the principle of patient autonomy. This principle establishes the right of patients (or their surrogates) to determine which medical interventions to accept or refuse, even when the absence of treatment results in death. It was affirmed by the U.S. Supreme Court in the case of Nancy Cruzan in 1990. The court acknowledged that patients who die after life support is withheld or withdrawn die of the underlying disease process. Such deaths are not assisted suicides or euthanasia. The courts have also reasoned that the spouse and children are the most appropriate surrogates because they are best positioned to know the patient’s feelings and desires about treatment.
In fact, next of kin are no better than physicians in estimating what the patient would want with regard to end-of-life care (5). Therefore, the physician, acting on behalf of the patient, must assess the validity of the surrogates’ preferences and the commonality of belief structure. Friends or family members may hold power of attorney to make decisions for the patient, as directed by a living will or advanced directive. However, living wills have not had a major impact on decision making or costs associated with end-of-life care because they are so nonspecific. Patients frequently express different beliefs when they are healthy than when they face decisions about withdrawal of life support measures (6). The U.S. Supreme Court has unanimously ruled that there is no constitutional right to physician-assisted suicide, but has also effectively required all states to ensure that their laws do not obstruct the provision of palliative care—including the administration of drugs as needed to avoid pain at the end of life (7). The provision of morphine or other medications at the end of life to control pain and suffering has the full force of the judiciary behind it.
From a historical context, these rulings have come at a time when modern technology can sustain organ function for prolonged periods, and thus they are of great importance to physicians working in the CCU. Lay people, through the print media and television, have come to expect full recovery after illness. Families and patients often seem mystified when informed of the details of an illness and become alarmed when they realize that meaningful recovery may not be possible. The gap between family expectations and medical reality can only be closed by frequent empathetic and effective communication between the medical team, the family, and, when appropriate, the patient.
The widely publicized case of Terri Schiavo has reinforced the concept that people should carefully consider and discuss with spouses and family members how they want to be managed in case there is a life-threatening injury or illness. Most important, a power of attorney should be identified who can speak for the critically ill patient in the event of incapacitation.
Ethical Principles
Some fundamental principles of medical ethics have evolved over centuries and are generally accepted (Table 34.1).
TABLE 34.1 Fundamental Principles of Medical Ethics | |
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Autonomy
The term autonomy is derived from the Greek words auto (self) and nomos (rule or law). The principle is the source of the common law right of self-determination and lies behind the constitutional right of privacy. No right is held more sacred, and the U.S. Supreme Court has used this principle in asserting the right of patients to refuse life-saving treatment. If an adult patient is heavily sedated or unconscious, a surrogate decision maker (usually a spouse or family member) should authorize decisions about care. Health care providers need to realize that decisions about care are in the hands of the patient, not the medical team. The attending physician and other members of the medical team determine treatment strategy on the basis of scientific principles and then decide on the best course of action based on discussion with the patient or the families. The patient (or the surrogate decision maker) almost always accepts the team’s advice, but the relationship is one of partnership, not paternalism. The ethical principle of autonomy states that the patient has a right to self-determination that supersedes the desires of the medical team—even if it means that death of the patient will result. In the United States, minors do not have autonomy under the law, and parents become the decision makers.
The CCU environment does not always allow for the luxury of time, and lengthy discussions with multiple family members are sometimes not possible. Management of cardiogenic shock, recurrent ventricular fibrillation, acute pulmonary edema, or acute aortic dissection requires quick, reasoned actions. In such emergencies, the principle of preservation of life guides the team of caregivers, provided there are no antecedent instructions from the patient or family to withhold life support.
Although end-of-life issues are best discussed in the privacy of the outpatient clinic when the patient is medically stable, many patients misunderstand the process of advanced life support or are apprehensive about discussing death. Moreover, people’s views change when they become acutely ill (6), so the outpatient view may not be synonymous with the view when faced with the actual end of life. There is a nearly universal taboo against discussing death, which is particularly common among the older generation. A significant number of people prefer a less dominant autonomous role in end-of-life decisions and put their trust in their doctors and the health care system (8). To approach a critically ill patient in the CCU with heartless questions about cardiopulmonary resuscitation and intubation is a grotesque distortion of what should be a very private, reasoned dialogue. Trying to berate a sick patient into being autonomous near end of life is a tragic mistake. Our practice is always to discuss end of life in the outpatient setting when appropriate, but recognizing that views may change. When this is not possible, which is often the case, it is helpful to talk to the patient with a nurse or alone at the bedside and attempt to have them understand and make distinctions between short-term aggressive care and prolonged life support.
In the end, the informed patient can usually make an autonomous decision. Physicians must guard against imposing their own values and should not slant the discussion in such a way as to mirror their own feelings about the end of life. It must be recognized that some cultures object to informing patients of a terminal diagnosis. It may be believed that the family, not the patient, should make life support decisions. Violating a patient’s cultural values should be avoided. This is a serious problem that defies a simple solution. It is often useful to have serious dialogue with the family and then the patient as soon as possible—usually within 48 hours of admission to the CCU.
Preservation of Life
All physicians and nurses are aware of this ethical principle, and it requires no explanation. Problems may arise when preservation of life competes with beneficence or alleviation of suffering. For a dying patient, alleviation of suffering may be more important than prolonging the end of life. However, the sanctity of life is of great importance and has its roots in most religions. Many believe that every second of life is sacred and must be preserved at all cost.
Alleviation of Suffering (Beneficence)
To restore health and relieve suffering is one of the most time-honored goals of physicians. It is the fundamental duty of all doctors. Beneficence supersedes the perceived beliefs of society or the personal values of the physician. Relief of suffering may supersede preservation of life (see the section Rule of Double Effect), particularly when death is inescapable.
First Do No Harm (Nonmaleficence)
Primum non nocere is an ancient principle of medicine and is embedded in the Hippocratic oath: “I will use treatment to help the sick according to my ability and judgment, but I will never use it to injure or wrong them.” This principle underlies the physician’s decision to recognize that death is inescapable and to proceed with comfort care. However, the Hippocratic oath’s injunction to “do no harm” seldom applies in today’s environment. It is unethical to continue aggressive care for patients who have no hope for recovery; the physician’s goal is to provide comfort, not to prolong dying. Likewise, inappropriate drug use and the ordering of diagnostic tests that are potentially risky but not likely to help the patient are unethical under certain circumstances. On the other hand, there may be pressure from families to “keep going.” Such a dilemma requires frequent and careful dialogue with the family. It may take days for some family members to realize that death is imminent. In the CCU, it is not always possible to know when death is inescapable, and it is important for the physician to convey a sense of hope, when appropriate. Families and patients sometimes have unrealistic expectations and will request that “everything be done,” even though the patient has little or no hope for meaningful recovery. Some families will put a highly spiritual spin on the problem and insist that the medical team should hold out for a “miracle.” Sometimes, the patient wants more aggressive care than the family thinks is appropriate (9). Physicians may be inaccurately overly pessimistic, whereas patients tend to be inaccurately overly optimistic (8). Frequent, careful assessment of the patient and the prognosis coupled with frequent communication with family becomes even more important.
An experienced CCU team can often sense when multiorgan failure is beginning to emerge and is keenly aware of this when each day brings a new struggle to keep the patient alive. Such patients are often intubated, sedated, and unable to carry on meaningful dialogue. It is the caregivers who have specialized knowledge of the natural history of disease, not the family. It is the medical team who must use this powerful knowledge to help guide families when making decisions about withdrawal of life support. Families often want certainty, but there is no certainty in most instances, only judgments. Medical teams should clearly describe what will likely happen if aggressive treatments are continued and contrast this information with what will likely happen if comfort-only care is begun. A combination of objective quantitative information and the team’s judgment about outcome is better than either alone (8).
Justice: Ensure That Medical Resources Are Allocated Fairly
It is clear that some economically deprived populations are underserved and as a consequence may have higher morbidity and mortality rates. Decisions regarding care should be blind to economic circumstances, ethnicity, perceived societal views, political persuasion, gender, and age. As care becomes more rationed in our society, the principle of justice takes on more practical importance. Heart transplantation, for example, is a highly rationed form of treatment with generally accepted medical indications and contraindications. If a heart is transplanted into a patient who does not comply with treatment and who dies quickly of rejection, two people die: the noncompliant patient and the anonymous patient on the transplant list who dies awaiting a heart transplant. In our society, end-stage heart failure and the need for heart transplants occurs in cocaine dealers, prisoners, pedophiles, and wealthy elderly people who are beyond the usual age limit for heart transplantation. The principle of justice would assume that only medical need determines care. However, outcomes for heart transplantation are affected by social issues, medical compliance, age, family support, and underlying general health. If there were a surplus of donor hearts, decisions about who should receive a heart transplant would be less difficult. As all therapy becomes more rationed in an era of harsh cost containment, the principle of justice becomes more applicable in the CCU. The principle of justice will become more difficult to apply as competition for scarce resources intensifies. Some evidence exists that justice has been ignored and that racial bias has entered the decision-making process (9).
Telling the Truth
Honest communication between physician and patient is very important and is a major principle of ethics in Western society (10). In some societies, it is considered inappropriate to tell a patient that he or she has cancer; the stigma and fear associated with knowing one has cancer outweigh the active withholding of information about diagnosis and prognosis. In the United States, it is assumed that patients and families want to understand the diagnosis, prognosis, and risks and benefits of various diagnostic and therapeutic procedures, but the level of understanding desired by patients and families is highly variable (5
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