CHAPTER 2 Ethical Issues of Care in the Cardiac Intensive Care Unit
Economic and resource issues threaten to complicate further the work of ICU physicians. In the United States, CICU beds cost $2000 to $10,000 per day. In the current climate of increasing pressures to limit health care costs, the pattern of high charges accrued by patients with poor prognoses in ICUs has drawn increased scrutiny, and strategies to avoid prolonged futile ICU treatment have been studied.2 The practice of providing tens of thousands of dollars’ worth of advanced care to ICU patients who have essentially no chance of recovery is ethically problematic because health care resources are limited in terms of dollars, ICU beds, and personnel. With many CICUs routinely filled to capacity, allowing patients with no real chance of improvement to occupy unit beds may prevent other patients with a high probability of benefiting from intensive care from being able to gain access to the CICU. Although we remain generally opposed to physicians withholding potentially beneficial therapies solely for economic reasons, in the current political and economic climate, critical care physicians should become conversant with ICU economics and develop sound stewardship practices with regard to CICU resources.
Western Biomedical Ethics
As defined by the Oxford English Dictionary, ethics represents “the science of morals; the department of study concerned with the principles of human duty,” and “the rules of conduct recognized in certain associations or departments of human life.”3 Medical ethics addresses two distinct but overlapping areas: the generic issue of what it means to practice medicine in a manner consistent with basic moral values, and the more specific challenge of identifying principles and guidelines for proper physician conduct that can be widely agreed on by the medical profession. Although confidentiality in medicine, as in law, is a strict ethical rule, it derives less from abstract moral values and more from its necessity for the effective practice of medicine; a psychiatrist who reports a bank robber’s after-the-fact confession is violating the profession’s ethics, but may not be acting immorally. For the purposes of this chapter, the term medical ethics represents guidelines for proper and principled conduct by physicians.
Although Western biomedical ethics dates back to the ancient Greeks,4 it developed into a discipline of its own in the 1970s, largely as a result of new dilemmas posed by powerful new medical therapies. As medicine developed and strengthened its ability to maintain physiologic functioning in the face of ever greater insult and injury to the body, patients, and more often their loved ones and physicians, found themselves struggling with the often painful question of when to allow the patient to die. The 1976 New Jersey Supreme Court decision in the case of Karen Ann Quinlan established that advanced life support could be withdrawn from patients who have essentially no chance to regain any reasonable quality of life.5 Since that time, a flurry of other legal decisions, state and federal laws, and reports and consensus statements from various medical societies and regulatory commissions have helped define in what manner, under what circumstances, and by whose authority advanced or basic life support can be withdrawn.6–16
Various methods for “thinking ethically” have been identified and used during the decades-long evolution of the field of bioethics.17 We have selected three methods that have been the most influential in bioethical analysis to date, and that are the most helpful for addressing clinical situations in the ICU: (1) principlism, (2) consequentialism, and (3) casuistry. Physicians should not feel compelled to choose one of these methods over the others as their primary way for ethical analysis and reflection, but rather using some combination of the three methods in most cases can be the most helpful.
Principlism
Principlism has a concordance with the Western philosophical theory of deontology. Deontologic arguments hold that actions must be evaluated on the basis of the inherent qualities of the action itself and the motivations or intentions underlying the action. When applied to the clinical setting, deontology asserts that physicians and other health care professionals have specific obligations, moral duties (deon in Greek means “duty”), and rules that in most circumstances should be followed and fulfilled.18 Beauchamp and Childress19 identified four fundamental principles and duties from which, in their opinion, all other bioethical principles and duties can be derived: autonomy, beneficence, nonmaleficence, and justice. An understanding of these principles allows the physician to approach ethical dilemmas in an organized and thoughtful manner. With medicine in its current inexact state, however, no physician is able to practice without sometimes violating one or more of these fundamental principles. Many ethical dilemmas present a clash between these principles, and in such situations, physicians must choose which principle to uphold and which to relinquish.
Autonomy
Autonomy refers to the patient’s fundamental common law right to control his or her own body. As the U.S. Supreme Court ruled in 1891, in a case unrelated to medicine: “No right is held more sacred or is more carefully guarded by the common law than the right of every individual to the possession and control of his own person, free from all restraints or interference by others, unless by clear and unquestionable authority of law.”20 In medical terms, autonomy means the right of self-determination—the right to choose for oneself among the various therapies that are offered. Autonomy also implies a respect for the patient as an adult individual capable of making his or her own decisions. The principle of autonomy is in contrast to paternalism, in which it is presumed that the physician knows best and decides for the patient or leads the patient to the right decision.
Respect for autonomy means that adult patients with decision-making capacity have the right to refuse medical treatment, even if the treatment is life-sustaining. It follows that, except in emergency situations, patients must consent to any treatments they receive, and they must understand the risks and benefits of any proposed therapies or procedures for this consent to be meaningful. Autonomy also demands that physicians inform patients of reasonable alternatives to the proposed therapies without framing the discussion to bias patient’s decisions; physicians can and should make recommendations, but these should be distinct from the presentation of objective information about treatment options.21
Beneficence
The principle of beneficence represents the physician’s responsibility and ethical duty to benefit the patient. The physician’s duty is to reduce pain and suffering and, where possible, promote health and well-being. At its most basic level, beneficence is necessary to justify the practice of medicine, for if physicians do not benefit their patients, they lose their raison d’être. One caution related to the principle of beneficence is that physicians may have a tendency to judge “patient benefit” primarily in physiologic categories related to medical goals and outcomes. From the patient’s perspective, benefit may include not only medical outcomes, but also psycho-social-spiritual outcomes, interests, and activities that help to define the patient’s quality of life. A recommended intervention with the likelihood of a good medical outcome but that would not allow a patient to continue a significant interest or activity could be judged differently by the patient than by the physician because of differing perceptions of “benefit.”
Nonmaleficence
There are also other harms specific to the ICU. When a patient languishes on life support without a reasonable chance of recovery, the physician violates the principle of nonmaleficence. For a patient, the ICU can be an uncomfortable and undignified setting, filled with unfamiliar and jarring sights and sounds. Being sustained on mechanical ventilation ranges from unpleasant to miserable unless the patient is unconscious or heavily sedated. The only justification for putting patients through such experiences is an expectation that they may return to some reasonable quality of life as determined by the patient’s values. When physicians’ care serves only to extend the process of dying and prolong suffering, they violate nonmaleficence. In ancient Greece, the Hippocratic Corpus described as one of the primary roles of medicine refraining from treating hopelessly ill individuals, lest physicians be thought of as charlatans.22
Justice
On a micro-allocation level, the principle of justice plays a role in the ICU in terms of triage. With a limited number of beds, the physician in charge of the unit must decide which patients have the greatest need for and the greatest potential to benefit from intensive care. Because intensive care represents a very expensive form of medical intervention, consuming greater than 13% of U.S. hospital costs and 4% of total U.S. health care expenditures,23 there is a strong national interest in curtailing wasteful ICU use. The concepts of futility and rationing help in analyzing the challenge of triage, but as Jecker and Schneiderman24,25 have observed, the two terms have different points of reference. Determinations of futility are related to whether identified goals of treatment are achievable.26 Futility can have two distinct meanings, referring to treatment that has essentially no chance of achieving its immediate physiologic purpose or effect, or, alternatively, that has essentially no chance of meaningfully benefiting the patient. Treating a bacterial pneumonia in a brain-dead patient would be considered not futile with the former definition and certainly futile with the latter. The threshold for futility is a contentious subject, and some authors have argued that the impossibility of arriving at widely accepted objective, quantitative standards renders use of the term inappropriate.27,28
Futility differs conceptually from rationing in that futility applies to an individual patient’s chances of benefiting from treatment, whereas rationing refers to the distribution of limited resources within a population. Rationing is fair only when it is applied in an even-handed way for patients with similar needs, without regard to race, ethnicity, educational level, or socioeconomic status. Futility affects triage decisions because futile treatment violates the principles of beneficence and nonmaleficence. Such wasteful use of medical care also violates the principle of justice when resources are limited. Rationing comes into play when there are more patients who need ICU care than there are beds, mechanical ventilators, or other critical care resources available. As health care costs continue to increase, physicians may find increasing pressures in the ICU to limit care for patients with poor prognoses. The ethical test in such circumstances is whether rationing is necessary, and whether it is applied in a fair manner (i.e., similar cases are treated similarly). To maintain a clear understanding of what physicians are doing, it is essential that assertions of futility do not become either a mask behind which rationing or hospital cost-saving decisions can hide or a means of bullying a patient or family into accepting decisions limiting treatment.29,30
Consequentialism
Casuistry
The third method of analysis that can lead to ethically supportable actions is termed casuistry,31 a word that shares its roots with the word cases. Although the term may be unfamiliar to many physicians, the method itself is likely to be familiar to them. Casuistry is based on practical judgments about the similarities and differences between and among cases. Medicine and law use this method when they look to previous and precedent cases to provide insight about a new case at hand. When a patient presents to a physician with a specific set of symptoms and complaints, and after the physician analyzes the results of various diagnostic tests, a skilled and knowledgeable physician is usually able to arrive at a specific diagnosis. The diagnosis is based on attention to the details of the patient’s symptoms and the test results, but also on the physician’s training and experience of having personally seen or having read in the published literature about similar or identical cases.
An additional feature of casuistry is that as cases are compared, and similarities and differences are identified, moral maxims or ethical rules of thumb can emerge that can also be helpful for current and future cases and dilemmas. Such moral maxims include the following: (1) adult, informed patients with decision-making capacity can refuse recommended treatment; (2) a lesser harm to a patient can be tolerated to prevent a greater harm; and (3) physicians are not obligated to offer or provide treatments that they judge to be medically inappropriate. One challenge of casuistry is to pay sufficient attention to the relevant facts of the new case to be able to identify previous cases that are similar enough to provide guidance for the case at hand.
Practical Guidelines for Ethical Decision Making
Patient Partnership
All decision making—and all health care—must occur with the recognition that patients are partners in their own health care decisions. The American Hospital Association has supported this partnership model for decision making by addressing patient expectations, rights, and responsibilities.32 Among these expectations and rights, the most salient are the right of patients to participate in medical decision making with their physicians, and the right to make informed decisions, including to consent to and to refuse treatment. To exercise these rights, patients need accurate and comprehensible information about diagnoses, treatments, and prognosis. More specifically, patients need a description of the treatment, the reasons for recommending it, the known adverse effects of the treatment and their likelihood of occurring, the possible outcomes of the treatment, alternative treatments and their attendant risks and likely outcomes, the risks and benefits involved in refusing the proposed treatment, and the name and position of the person or persons who would carry out or implement the treatment. In cases in which someone other than the patient has legal responsibility for making health care decisions on behalf of the patient, all patients’ expectations and rights apply to this designee and the patient. According to the President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, “Ethically valid consent is a process of shared decision-making based upon mutual respect and participation, not a ritual to be equated with reciting the contents of a form that details the risks of particular treatments.”33
Communication
Effective communication requires the ability to listen attentively,34 and to express empathy, understanding, and compassion. The physician must be able to employ tact without compromising honesty and to acknowledge and respond to strong emotional expressions without withdrawing or becoming defensive or antagonistic. The physician often must read between the lines and recognize subtle cues about what matters most to patients and their loved ones. Effective communication prevents and defuses conflict; helps patients and families work through their anxieties, fears, and anger; and is the most important skill in negotiating the difficult ethical dilemmas that arise in the ICU.
A second common problem is for patients and their families to receive conflicting information or advice from different physicians involved in the patient’s care. Alternatively, different consulting services may each address a specific aspect of the patient’s care without helping the patient and family to integrate the disparate pieces of data into a coherent overall understanding of the patient’s condition, prognosis, and treatment plan. Multidisciplinary care conferences, which include the ICU physician, relevant consulting physicians, nurses, and, when appropriate, social workers and case managers, should be held periodically to ensure that there is a coherent, shared vision of the patient’s overall management plan.35 Formal, structured multidisciplinary conferences that include the patient and family and that are held within 72 hours of ICU admission have been shown to reduce the burdens of intensive care for dying patients and allow patients with lower mortality rates access to the ICU.2
Determining Patients’ Values and Preferences
When patients do not have decision-making capacity, physicians must turn to surrogate decision makers, advance directives, or both. Decisions about life support and end-of-life care are among the most personal decisions to be made. For surrogate decision makers, being asked to make such decisions on a loved one’s behalf frequently elicits feelings of grief, guilt, confusion, and being overwhelmed. Physicians can perform a tremendous service for their patients’ families and loved ones by discussing resuscitation status, life support, and terminal care issues with patients before they lose decision-making capacity. Patients are not generally eager to hold such discussions; however, this is no excuse for not broaching the subject, especially with patients who have life-threatening diseases.36
Withholding and Withdrawing of Life Support
Legal Precedents
Patients with Decision-Making Capacity
The right of adult patients with decision-making capacity to refuse advanced life support and medically supplied nutrition and hydration is well established in the United States through case law and hospital policies.37 The case of Bouvia v. Superior Court38 concerned a young, quadriplegic woman with cerebral palsy who was experiencing unrelenting pain and requested that the hospital withhold her medically supplied tube feedings so that she could die. The hospital refused. In its 1986 ruling, the California State Court of Appeals found that “to insist on continuing Bouvia’s life … at the patient’s sole expense and against her competent will, thus inflicting never ending physical torture on her body until the inevitable, but artificially suspended, moment of death … invades the patient’s constitutional right of privacy, removes her freedom of choice and invades her right to self-determination.”
Patients Lacking Decision-Making Capacity
The 1976 Karen Ann Quinlan case5 helped spur the development and dissemination of biomedical ethics. This groundbreaking case involved a 22-year-old woman who was in a persistent vegetative state. Her father, who had been appointed her legal guardian, requested that mechanical ventilation be withdrawn, asserting that she would not have wanted to be kept alive under such circumstances. Her physicians refused to comply. The case was ultimately decided by the New Jersey Supreme Court, which evaluated “the reasonable possibility of return to cognitive and sapient life as distinguished from … biological vegetative existence.”5 The decision indicated that advanced life support provided a clear benefit to the patient only if it would result in “at very least, a remission of symptoms enabling a return toward a normal functioning, integrated existence.” The court ruled that life support could be withdrawn from patients if they had essentially no chance of regaining any reasonable quality of life.
The major challenge in cases such as Quinlan involving patients lacking decision-making capacity is deciding who is the appropriate decision maker. Although state courts have consistently recognized the right of patients to refuse treatment, including medically supplied nutrition and hydration, they have been much less consistent with regard to the question of how decisions should be made for patients who cannot decide for themselves.39–44 Some states have permitted families to make decisions to withdraw life-sustaining treatment from patients lacking decision-making capacity, whereas other states have required that there be clear and convincing evidence that the patient himself or herself would not have wanted such treatment. States allowing surrogate decisions in the absence of clear and convincing evidence about what the patient would have wanted have tended to follow a standard of either substituted judgment or best interest. The substituted judgment standard allows a surrogate to make his or her best judgment of what the patient would have decided if the patient were competent. The best interest standard applies when it remains unclear what the patient would have decided. In this eventuality, the surrogate and the medical team base the decision on the patient’s best interest.
The concept of proportionate treatment can help guide best interest decision making: “Proportionate treatment is that which, in the view of the patient, has at least a reasonable chance of providing benefits to the patient, which benefits outweigh the burdens attendant to the treatment. Thus, even if a proposed course of treatment might be extremely painful or intrusive, it would still be proportionate treatment if the prognosis was for complete cure or significant improvement in the patient’s condition. On the other hand, a treatment course which is only minimally painful or intrusive may nonetheless be considered disproportionate to the potential benefits if the prognosis is virtually hopeless for any significant condition.”44
Many states have codified the substituted judgment standard, enacting laws that give families the right to make decisions on behalf of patients lacking decision-making capacity. For patients who did not identify a surrogate decision maker before they lost decision-making capacity, most states identify a hierarchy among relatives so that it is clear who the decision maker should be. Most of these statutes apply only to patients who are terminally ill, however.45
From a legal and ethical perspective, no distinction is made between nutrition and hydration provided through a medical device (e.g., a gastrostomy or nasogastric tube or intravenous line) and other forms of life-sustaining treatment such as mechanical ventilation. As one California court ruled, “… medical procedures to provide nutrition and hydration are more similar to other medical procedures than to typical human ways of providing nutrition and hydration. Their benefits and burdens ought to be evaluated in the same manner as any other medical procedure.”44
A different problem arises for patients who have never had decision-making capacity because they have never been in a condition in which they could meaningfully indicate what level of health care they would want if they were critically ill. Such patients include young children and individuals with severe mental retardation. Different states have dealt with this problem differently. Some have ruled that the right to refuse medical treatment must extend to incompetent patients because human dignity has value for them just as for patients who are competent, and that legal guardians or conservators have the right to make such decisions on behalf of their ward.46 In such cases, some courts have opined, decisions about withholding treatment from patients who have never been competent should be based on an attempt to “ascertain the incompetent person’s actual interests and preferences.”39 In other words, the decision should be that which the patient would make if the patient were competent but able to take into account his or her actual incompetency. Other courts have ruled that it is unrealistic to try to determine what a patient who had never been competent would have wanted, and that, for legal purposes, such patients should be treated as children.47 Some courts have specifically rejected the substituted judgment standard, finding that a third party should not have the power to make quality-of-life judgments on another’s behalf.
Many legal issues regarding the termination of life-sustaining treatment remain unresolved. The courts have given essentially no guidance in the area of whether physicians have the authority to terminate life support for patients lacking decision-making capacity against the wishes of the patient’s family. Generally, the courts have respected the physician’s right to refuse to provide treatments that the physician considers to be medically inappropriate, but the applicability of this right to life support has yet to be established. In most cases involving attempts by hospitals or physicians to use a futility argument to justify foregoing life-sustaining treatment requested or demanded by patients or their family, the courts have ruled in favor of continuing treatment.48
Advance Directives
Since the Quinlan decision,5 state legislatures and the federal government have passed laws designed to increase the authority of individuals to control the level of treatment they will receive when they are incapable of participating in decision making. These laws set standards for several types of documents, but primarily living wills and medical powers of attorney. Collectively, these documents are known as written advance directives. These documents usually have legal standing only within the state where they are completed, and only if they conform to the state’s statutory language, although some states grant some degree of validity to other states’ advance directives. These documents can assist loved ones and health care professionals in determining what an individual would have wanted, especially if the patient has an irreversible condition such as a terminal illness or a persistent vegetative state. Health care providers can play a key role in encouraging patients to engage in advance care planning that culminates in completion of written advance directives.
Living Wills and Medical Powers of Attorney
Living wills indicate what level of life support and other medical care a patient would want under specified circumstances. The specific forms of treatment covered by living wills vary among states and are sometimes restricted to life-sustaining treatments. Some state laws specifically exclude medically supplied nutrition and hydration from the treatments that can be withheld or withdrawn. With the exception of Missouri, however, state courts have ruled that these exclusions refer only to nonmedical feedings.49 The requirement that living wills provide for a wide range of unforeseeable eventualities forces the documents to be general in nature and limits their usefulness.6 In a study of 102 elderly individuals in Florida, Walker and colleagues50 found that there was a wide range of resuscitation status preferences among patients who had completed living wills, and that the language of the living wills was too vague in most cases to determine their preferences.
Medical powers of attorney provide more flexibility than living wills because they name a surrogate decision maker who is authorized to make health care decisions on the patient’s behalf if the patient loses decision-making capacity. The advantage of a medical power of attorney lies in the authority it grants the designated agent to make decisions on the basis of the specific details of the patient’s circumstances and condition. Studies have found that spouses and other close family members are often inaccurate at predicting what their loved one would want.51 In addition, living wills and medical powers of attorney are limited by the well-documented fact that an individual’s desire to receive aggressive medical care can change over time.52–54 What level of care a healthy individual imagines wanting during a hypothetical illness may be very different from what that individual wants when ill.52 On the one hand, as patients become increasingly ill, they may be willing to settle for a decreasing quality of life. On the other hand, when facing a long illness, patients may grow weary of hospitalization and invasive or otherwise unpleasant medical procedures or treatments and decline treatment that they previously thought they would have wanted.
Patient Self-Determination Act
The U.S. federal government encouraged the use of advance directives when it enacted the 1990 Patient Self-Determination Act (PSDA).55 The law requires hospitals, nursing homes, and other health care institutions to (1) provide to patients written information regarding advance directives and the patient’s right to accept or refuse treatment; (2) document in the patient’s medical record whether an advance directive has been completed; and (3) provide education about advance directives for patients, their families, and the facility’s staff. Health care institutions failing to follow the PSDA may have their federal Medicare and Medicaid reimbursements withheld. Despite this legislation, studies in the 1990s reported that only a few hospitalized patients had their advance directives acknowledged, and that physicians were usually unaware when their patients with life-threatening illness preferred not to be resuscitated.56,57 A study of hospitalized patients with life-threatening diagnoses found that less than 50% of physicians knew when their patients did not want to receive cardiopulmonary resuscitation (CPR).57 The proportion of elderly Americans who have completed advance directives is reported to have increased, however.58
Deciding to Withhold or Withdraw Life Support
Physicians withhold or withdraw life support in two general circumstances: (1) when the patient or the patient’s surrogate refuses further treatment, or (2) when the physician of record determines that further treatment is medically futile or inappropriate. In most cases in which life support is foregone, both criteria are met.59 Ideally, such a momentous decision by physicians would be based on individual patient preferences and objective medical information. However, studies of ICU health care professionals found that personal characteristics of physicians are significantly associated with their decision making about withholding or withdrawing life support.60–63 These characteristics include age, religion, number of years since graduation, amount of time spent in clinical practice, level and type of specialization, type of hospital, and number of ICU beds where the physician works. In the study by Cook and colleagues,61 in which ICU health care professionals chose an appropriate level of care for 12 patient scenarios, there was extreme variability among individuals’ decisions: only 1 of the 12 scenarios did more than half of the respondents make the same choice, and opposite extremes of care were chosen by more than 10% of the respondents in 8 of the 12 cases. Physicians have also been found to be much more willing to offer life support to patients with life-threatening cardiovascular or pulmonary disease than to patients with cancer, even when the prognosis is the same.62 That physicians’ personal characteristics influence their decision making should not be surprising; rather, it should caution against intransigence and remind physicians of their own potential biases and of the likelihood that other equally competent professionals may disagree with their decisions. These findings re-emphasize the importance of ascertaining the patient’s values and preferences; if life-support decisions can be significantly influenced by physicians’ personal characteristics, leading to physicians disagreeing on appropriate levels of treatment, decision making should be based on the values and desires of the individual patient.
One challenge in end-of-life decisions is the uncertainty associated with predicting patient outcomes. The common use of the word futility implies that there exist accurate tools for identifying which patients are likely to improve or recover. Despite the existence of multiple prognostic and severity scoring systems useful in predicting aggregated group outcomes, foreseeing the outcome of individual patients remains an inexact science.64 In most ICU cases, the concept of futility remains ephemeral and ill-defined, and physicians must depend on their clinical judgment to determine when further treatment has virtually no chance to return the patient to a reasonable quality of life according to the patient’s values. That such determinations are not completely accurate does not obviate their necessity, but does make caution and humility appropriate.
There is a broad consensus among medical societies, critical care physicians, and ethicists that withdrawing and withholding life support do not differ ethically from one another.6,9,11,65–67 Nonetheless, physician surveys have repeatedly found that many physicians feel differently about the two actions.68–70 Withdrawing a life-sustaining intervention, especially if the patient dies soon afterward, may feel more like causing death than withholding that same intervention. Because the two actions of withholding and withdrawing share the same justification, motivation, and end result, however, there is no moral basis for differentiating them. Physicians are in a stronger position to assert that they have “tried everything” to save the patient when withdrawing interventions than when declining to initiate a lifesaving intervention in the first place.
Withholding and Withdrawing Basic Life Support
Denying basic life support (e.g., medically supplied nutrition and hydration, oxygen) is a difficult step in medicine. Although more advanced life support may be viewed as “heroic” or “extraordinary,” and other medical therapies such as antibiotics are aimed at treating infection, basic life support is simply that which everyone depends on to live; it may not seem to be part of medicine so much as part of normal human existence. Allowing a patient to die of malnutrition or dehydration may even seem like murder to some physicians. As noted previously, however, state courts have generally concluded that medically supplied nutrition and hydration are akin to other medical treatments. Ethicists71–73 and medical societies have likewise generally denied an ethical distinction between terminating advanced and basic life support, although there has been some disagreement with this position.74 Nonetheless, denying a patient without decision-making capacity medically supplied nutrition and hydration remains ethically and legally controversial.75 Physicians should be familiar with their own state’s laws and legal precedents; hospital attorneys can be of assistance in this regard. As always, the problem lies in identifying the patient’s preferences when the patient cannot decide for himself.
Whatever a physician’s personal views, thoughtful decision making about basic life support is essential in the ICU. Clinicians should consider four major points. First, any medical intervention should serve what the patient considers to be in his or her best interest as determined by open and forthright communication with the patient and the patient’s family and loved ones. Second, close family members and loved ones should be included in the decision-making process. This involvement not only serves to protect the best interests of the patient, but also helps prevent conflict regarding the course of treatment chosen. Third, physicians should anticipate the range of different medical courses that the patient is likely to follow and determine what the patient would want done for each predicted development. This anticipation makes possible a coherent medical plan that facilitates goal-centered decision making and that does not have to be reconceptualized with every change in the patient’s condition. Fourth, physicians often find that withdrawing a life-sustaining intervention is psychologically more troubling than withholding it. Although this feeling can never serve as justification for withholding treatment, it emphasizes the desirability of not starting interventions without a thoughtful evaluation of whether they are consonant with the patient’s best interests.
Withholding Advanced Life Support
In discussing resuscitation status with patients, physicians have a responsibility to convey an understanding of what is involved in CPR and mechanical ventilation, the probability of survival to hospital discharge if CPR is instituted, the near certainty of death if CPR is withheld, and why the physician does or does not recommend a DNR order. Physicians should stress that, regardless of resuscitation status, all other treatments and care will continue as previously planned; limits are being set, but a DNR order does not mean that the medical team is giving up on or abandoning the patient. Although determining a patient’s resuscitation status represents an essential part of providing responsible care to critically ill patients, studies continue to show that communication about this issue remains very poor, and most physicians do not know their patients’ preferences.57 Research has shown that physicians and family members cannot accurately predict patient preferences, so there is no substitute for talking with the patient.76,77 Historically, physicians often postponed making resuscitation status decisions until the patient no longer had decision-making capacity, but at least in some regions, there has been a shift toward establishing resuscitation status earlier in a patient’s hospitalization.78,79
Several major impetuses have focused increased attention on determining patients’ preferences regarding resuscitation status, including studies showing poor post-CPR survival, an increased emphasis on patient autonomy and the right to refuse treatment, and growing concern about wasteful health care expenditures. Many studies have examined post-CPR survival, showing a range of 5% to 25% of patients surviving to discharge.80–84 For the CICU, patients resuscitated from ventricular arrhythmias, including ventricular fibrillation after myocardial infarction, have fared significantly better, with 50% surviving to discharge. In a 1995 study of CPR survival in ICU and non-ICU patients, Karetzky and colleagues85 found that resuscitation was successful for only 3% of ICU patients receiving CPR compared with 14% of non-ICU patients.
These findings emphasize the dilemma posed by CPR, especially in the ICU. CPR represents an invasive and frequently brutal intervention, and can be justified only if it has a reasonable chance of benefiting the patient, and if it is in accord with patient wishes. Judgments of reasonableness must be informed by the patient’s values because this is a subjective determination: A 5% chance of survival to discharge may be acceptable to some patients, but not to others. For patients to make informed decisions, they require clear and accurate information about the probability of survival.86 Two surveys of more than 200 elderly patients each found that respondents consistently overestimated the likelihood of survival to discharge after CPR; in one of the studies, the overestimation was by 300% or more.87,88 Both studies found that patients’ choices to accept or refuse CPR was strongly influenced by the probability of surviving to discharge. In the second study, Murphy and colleagues88 found that the percentage of elderly patients who said they would opt for CPR after cardiac arrest during an acute illness decreased from 41% to 22% after they were informed of the probability of survival.
For patient resuscitation status decisions to be respected, they must be documented in a readily accessible and legible manner in the medical record. Health care institutions using electronic medical records have immediate access to resuscitation status documentation if DNR orders are placed in a prominent place in the electronic medical record. Physicians who believe that they cannot participate in resuscitation status decision making probably should not provide care for critically ill patients.
The most contentious DNR problem centers on the question of medical futility. Can physicians write a DNR order contrary to the wishes of the patient or the patient’s surrogate when the physician judges that CPR would be medically futile? This is a complex dilemma in which ethical principles and duties are in conflict (e.g., patient autonomy, nonmaleficence, professional integrity). As noted previously, the term futility in medicine remains vague without a widely accepted definition.26 In the literature regarding DNR orders written against patient wishes, two basic points of view emerge that are separated mainly by differing views of futility. Some authors have argued that determining what range of treatments to offer a patient must remain the physician’s prerogative. When a physician determines that a certain therapy should be withheld because it is futile (i.e., because it has no reasonable likelihood of benefiting the patient), the patient’s preferences become irrelevant. This position asserts that physicians have the professional responsibility to judge whether a specific medical intervention has what the physician considers to be a reasonable chance of benefiting the patient.89
Opponents of this perspective argue that determinations of what is reasonable and what constitutes a benefit are subjective judgments that reflect the decision maker’s underlying values.28,90 In this view, the value judgment of what constitutes an acceptable likelihood of offering a meaningful benefit is best made by the patient. This second perspective argues for a physiologic definition of futility, by which a treatment is futile only if it cannot achieve its immediate physiologic objective. Waisel and Truog90 stated: “CPR is futile only if it is impossible to do cardiac massage and ventilations. As long as circulation and gas exchange are occurring, CPR is not futile, even if no one expects improvement in the patient’s condition.”
Withdrawing Advanced Life Support
The withdrawal of advanced life support is usually followed quickly by death and represents one of the most anguishing medical decisions for patients, loved ones, nurses, and physicians. When physicians have discussed life support and critical care preferences with their patients in advance and developed an appreciation of the patient’s goals and quality-of-life values, the decision about whether to withdraw life support is often much clearer and less troubling. There are no strict guidelines for deciding how or when to withdraw advanced life support, although many position papers have been published.7,9,59,67 Generally, life support is withdrawn when the patient has virtually no chance of regaining a reasonable quality of life, or when the burdens of continued treatment outweigh the benefits.
Withdrawal is usually considered only for patients who have terminal and irreversible conditions, but there are exceptions. Each patient must be evaluated in terms of the specific clinical context and the patient’s expressed values and wishes. Patients and their families have a right to know the best and most current data regarding the patient’s condition and prognosis and the efficacy of the available treatments. Studies such as APACHE (Acute Physiology, Age, and Chronic Health Evaluation) III91 can be extremely valuable, but physicians should not exaggerate medicine’s ability to make predictions about individual patients.
Patients on mechanical ventilators should not be presumed to lack decision-making capacity. To be judged as having decision-making capacity, patients must be able to appreciate their circumstances and their condition, understand the respective consequences of accepting or rejecting any proposed treatments, exhibit rational decision making, and articulate a choice.92 Psychiatric consultation may be useful when competency is questionable. For a patient to give informed consent for the withdrawal of life support, all narcotics must have been discontinued long enough for the patient to be clear-headed, and any treatable depression must have been clinically addressed.
Although most patients on advanced life support are determined to lack decision-making capacity, many are not. Physicians must make a rigorous effort to solicit the patient’s wishes concerning the continuation or withdrawal of treatment. Patients with decision-making capacity who wish to have life support withdrawn must be carefully evaluated. They have an ethical and legal right, as noted previously, to control what is done to their bodies and to refuse medical treatments, even if these treatments are necessary to maintain life. Conversely, some patients on advanced life support often experience severe reactive depressions and, if they survive their critical illness, are grateful that their requests to discontinue life support were not honored. Evaluating patient requests and refusals can be extremely difficult. When patients with curable illnesses request that life support be withdrawn, physicians should vigorously re-evaluate the patient’s decision-making capacity. When such patients have dependent minors, legal guidance may be appropriate.
Withdrawing life support is a stressful proposition, and decision making by patients and family members cannot be rushed. The negotiations represent delicate processes that have their own timing, processes integrally involved with coming to accept the inevitability of death and loss.93 As discussed previously, facilitators can assist in these situations. When the patient lacks decision-making capacity, the physician should engage the family and the patient’s surrogate to work toward consensus on all life-support decisions.
When implementing a decision to withdraw life support, the emphasis should be on maximizing patient comfort and minimizing emotional trauma to the family and loved ones. Although curtailing inotropic support may not result in distress, withdrawing mechanical ventilation can present the potential for extreme discomfort, especially if the patient is abruptly extubated and experiences airway obstruction. We advocate rapidly dialing down the supplemental oxygen, pressure support, and intermittent mandatory ventilation rate while maintaining a protected airway. Air hunger and anxiety should be controlled with intravenous morphine as necessary.94
Euthanasia and Assisted Suicide
Euthanasia and assisted suicide received increased attention in the first half of the 1990s. From Dr. Jack Kevorkian and his suicide machine to various state ballot initiatives, the issue of whether physicians should be authorized to assist patients to die has become a significant social policy issue.95 The term euthanasia literally means “good death”; traditionally, it has referred to putting terminally ill and suffering patients to death in a painless manner. Euthanasia in this sense is not usually directly relevant to critical care because ICUs are designed for patients who can be kept alive only with life-sustaining interventions; most ICU patients would die simply as a result of discontinuing all nonpalliative therapies.
The euthanasia debates touch on several important ICU issues, however. How does withdrawing life support differ from euthanasia? How does withholding antibiotics from a patient with bacterial pneumonia and advanced metastatic carcinoma differ from euthanasia? How does prescribing large doses of narcotics, which in addition to relieving pain can cause respiratory depression and hasten death, differ from euthanasia?
The difference in these cases lies in causality and intentionality. When a physician withdraws life support from a terminally ill patient, it is the patient’s disease that causes the death, not the withdrawal. Withdrawing treatment honors the patient’s legal and ethical right to refuse treatment. Similarly, withholding antibiotics respects the patient’s autonomy; it is the infection that kills the patient, not the withholding of medication. In the case of prescribing narcotics, the distinction becomes more subtle, but remains important; this is referred to as the principle of double effect.96 Almost all medications and treatments in a physician’s armamentarium have the potential for known side effects. Some side effects are desirable, and some are harmful, but the existence of side effects does not preclude treatment. When prescribing morphine and other narcotics to patients who are having mechanical ventilation withdrawn or who have terminal diseases and are in pain, the goal must be pain control, the reduction of anxiety, or even sedation; respiratory depression is a side effect, and it is tolerated in such cases, even to the point of hastening death, as long as the patient has been fully informed and has consented. Dosages must be titrated to achieve the intended goal. What is neither ethical nor legal is for physicians to prescribe medications or treatments in such a manner that the intended result is death. To some, these distinctions may seem purely semantic,97 but they are legally valid and represent widely shared ethical thinking. Active euthanasia is a crime in the United States and is opposed by many leading physicians, philosophers, and biomedical ethicists; we oppose active euthanasia as well.
Cross-Cultural Conflicts
Patients’ cultural values and beliefs must be understood to appreciate what their illness signifies to them and what they want from physicians.98 Cultural patterns have great influence on how individuals and families view illness, medicine, dying, and death, and on their behavioral response during periods of critical illness. Individuals facing death tend to fall back on their traditional cultural or religious beliefs.99 Health care providers in the United States increasingly find themselves in cross-cultural situations, confronted with the cultural dimensions of ethical decision making. Cross-cultural ethical issues in medicine have received increasing attention since the mid-1980s, and there has been growing acceptance within the medical community that bioethics is at least partly culturally determined.100–106 This means that ethical decision making in medicine depends on the specific cultural context in which the decision is being made, and that the ethical principles that Anglo-Americans consider important may seem unimportant to people from other societies.
Anglo-American biomedical ethics accords paramount status to the individual, underscoring the principles of individual rights, autonomy, and self-determination in decisions regarding health care. The fundamental ethical principle of patient autonomy has its basis in Western philosophy and in U.S. cultural values, which emphasize liberty, privacy, and individual rights. The central importance of individuals maintaining control over their body translates into the right to accept or refuse medical interventions. For individuals to be able to make medical decisions, they require an accurate understanding of their medical condition and any proposed treatments; truth telling and informed consent are also stressed in Western medical ethics. Knowledge and understanding form the basis of informed consent and autonomous decision making.107
Many other cultures view human identity in profoundly different ways, with much less emphasis on the individual. Many cultures have more relational understandings of human identity (i.e., individuals are defined by their relationships to others rather than by their characteristics as individuals), and the Western emphasis on individual rights and autonomy may not make sense to them.108 Traditional Chinese society emphasizes the value of family bonds, community, harmony, and responsibility.109 Respecting communal or familial hierarchies is more important than asserting individual autonomy. It is not that the interests of the family outweigh the interests of the individual; rather, the individual is conceived of primarily as a member of a family. Korean, Italian, and Mexican cultures show similar family-centered structures.110,111 The responsibility to show filial duty and protect the elderly may be what the family views as the most important factor in the care of terminally ill patients.112
The most common source of medical conflict resulting from these relational value systems concerns the disclosure of terminal diagnoses and negative prognostic information; many cultures object to informing patients of terminal diagnoses, especially diagnoses of cancer. A 1995 study of attitudes toward patient autonomy of different ethnic groups found that Korean-Americans and Mexican-Americans generally believed that patients should not be told about terminal diagnoses, and that the family, not the patient, should make life-support decisions. European-Americans and African-Americans were more likely to favor full disclosure and patient participation in decision making.113,114 The objection to disclosing distressing information stems from several different beliefs. Traditional Chinese and Southeast Asian cultures view the sick person as needing protection, similar to a child. From this perspective, telling patients upsetting diagnoses adds to their suffering, whereas healthy family members are in a stronger position to bear the bad news and make appropriate decisions. In addition, some cultures often view telling someone that they are dying as bad luck, similar to a curse. Traditional Navajo culture, which believes that “thought and language have the power to shape reality and to control events,” also objects to discussing negative information as potentially harmful to the patient.113
When a family does not want a patient to know about a diagnosis, physicians face a difficult ethical dilemma because patient autonomy and the need for informed consent are central to American medical ethics and jurisprudence. From a legal standpoint, courts have ruled that physicians should not be liable for honoring a patient’s specific request not to disclose information.115,116 Regarding issues of autonomy, Gostin108 and Pellegrino104 argue that patients have the right to use their autonomy to choose not to be informed. In the end, physicians must determine for themselves how to negotiate conflicts between their own value systems and the value systems of their patients. It is unreasonable to assert that physicians should strive to follow basic ethical principles and then claim that it is acceptable to toss these principles aside when they conflict with a patient’s values. When conflict arises, open communication is essential, and a willingness to compromise serves all parties well. For such culturally conflictual situations, Freedman117 has proposed a strategy of “offering truth” to the patient, rather than “forcing truth.” Using this strategy, a physician would ascertain directly from the patient how much he or she wants to know about diagnosis and prognosis, and the patient’s expressed wishes would be honored. At the very least, physicians should remain sensitive to cultural differences and maintain an open-minded and respectful attitude about other cultural beliefs and practices. Physicians should remember that a family’s cultural background can be a source of tremendous strength during the crisis of critical illness; violating a patient’s cultural mores should be avoided whenever possible.
Medical decision-making for patients who lack decision-making capacity and who have no surrogate decision-maker
Although different medical organizations have recommended have recommended and different hospitals have adopted different specific policies for dealing with these scenarios, there is an emerging consensus that the medical team recommending invasive or life-threatening treatment or the withholding or withdrawing of life-sustaining treatments cannot also play the dual role of surrogate by consenting to their proposed actions.118–123 Instead one of two approaches has been recommended by a number of hospitals and organizations when decisions involve limiting or withdrawing life support: either having a multidisciplinary review of the treatment plan by individuals not involved in the patient’s care (such as by the hospital ethics committee) or else involving the courts in order to have a guardian appointed to serve as a surrogate decision-maker. In cases involving invasive or high-risk procedures, an ethics consultant or other individual who is not involved in the patient’s care and who has expertise in patient rights and decision-making should participate in the decision-making process unless immediate treatment is needed for a medical urgency or emergency. In all these cases, familiarity with and adherence to relevant state law is mandatory.
Conclusion
Decisions about withholding or withdrawing life support occur frequently in ICUs and they represent a painful and difficult process for many physicians. The essential principle in these decisions is that end-of-life decision making must reflect the individual patient’s goals and quality-of-life values. At the same time, physicians are not obliged to provide futile treatments. How to communicate with patients and families and what words to use are probably the most important factors. Although some physicians may object to withholding or withdrawing life-sustaining treatment, patients have a clear and incontestable right to refuse life support and other treatments, even when such refusal results in their death.
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