CHAPTER 2 Ethical Issues of Care in the Cardiac Intensive Care Unit

Timothy Gilligan, Martin L. Smith, Thomas A. Raffin

Practical Guidelines for Ethical Decision Making

Withholding and Withdrawing of Life Support

Every human being of adult years and sound mind has a right to determine what shall be done with his own body.

U.S. Supreme Court Justice Benjamin Cardozo¹

CARE IN THE intensive care unit (ICU) represents one of the costliest and most aggressive forms of Western medicine. ICU patients are the sickest and the most unstable, and they often are in no position to participate in medical decision making. In addition, the patient’s family and loved ones are often left reeling by the sudden onset and seriousness of the illness. These factors bring to the ICU a host of difficult and troubling ethical issues. Responding wisely in an informed and compassionate manner is an essential part of good critical care medicine.

The primary defining characteristics of cardiac intensive care unit (CICU) patients are cardiovascular instability and life-threatening disease that require intensive monitoring, advanced life-support techniques, or both. These patients often have poor prognoses; a substantial number either do not survive to leave the CICU or do leave the unit but die on the wards without leaving the hospital. Physicians and other health care providers working in critical care must be comfortable working in the presence of death and dying, and must be prepared for the attendant ethical problems that often develop. These issues include, but are not limited to, writing do-not-resuscitate (DNR) orders, negotiating with family members who do not want a patient to be told about a diagnosis of a terminal illness, trying to determine what level of care an irreversibly ill patient without decision-making capacity would choose if able, and withholding or withdrawing life support. As the ability to preserve the physiologic functioning of critically ill patients has improved, physicians, patients, and their loved ones are increasingly faced with the questions of when and how to terminate life-sustaining treatment.

When addressing these issues, physicians are best served by remembering that their primary responsibility is to act in the patient’s best interest by maintaining open and honest communication with the patient, the patient’s loved ones, and the members of the medical team. Acting in the patient’s best interest means providing the best possible medical care for patients who can be saved and facilitating a peaceful and dignified death for patients who cannot.

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.

This chapter provides an overview of the ethical challenges that arise in critical care medicine. After a review of basic principles, guidelines, and methods of biomedical ethics, and a discussion of the ethical problems related to health care economics in the ICU, this chapter focuses on ethical issues related to the withholding and withdrawal of life support. Brief discussions of euthanasia and cross-cultural conflict are also included.

ICU medicine regularly brings us face to face with tragedy. ICU patients and their loved ones are often confronting the worst disasters of their lives. When conflict over medical care develops in this setting, it can be wrenching for all parties involved, including physicians. It is our hope that a firm grasp of the issues addressed in this chapter allows the critical care physician to approach ethical dilemmas in the ICU with confidence and understanding.

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.

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 Schneiderman^24,²⁵ 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

The four principles of biomedical ethics can help untangle and clarify many complex and troubling dilemmas. In different cases, each of the individual principles may seem more or less important, but they are all usually in some way pertinent. These principles can come into conflict with each other, which can signify the presence of an ethical dilemma. Practically, the principles can help to pose a series of significant, patient-centered questions for physicians: “Am I respecting my patient’s autonomy?” “Has the patient consented to the various treatments?” “Do I know my patient’s resuscitation status?” “Is my therapeutic plan likely to benefit my patient, and am I doing all I can to improve my patient’s well-being?” “Am I minimizing patient harm?” “Have I identified goals of treatment or care with my patient (or the surrogate), and are those goals achievable?” “Is there an appropriate balance between potential benefit and risk of harm?” “Is my plan of care consistent with principles of social justice?”

Consequentialism

The second method for “thinking ethically” about clinical and ICU situations is consequentialism, which has its root meaning in the Western philosophical theory of teleology (telos in Greek means “ends”). Consequentialist reasoning judges actions as right or wrong based on their consequences or ends. This method of reasoning and analysis requires an anticipatory, projected calculation of the likely positive and negative results of different identified options before decisions and actions are carried out.

A physician may be requested by a family members not to disclose a poor prognosis to their hospitalized loved one because, in their view, the disclosure would upset the patient. Because the patient should be at the center of a “calculation of consequences” for this scenario, the first question should be: How will the disclosure or nondisclosure impact the patient positively by way of benefit or negatively by way of harms? The patient is not the only one who would experience consequences as a result of this particular decision, however. Other stakeholders who can be affected positively and negatively include the following:

• The patient’s family: Will they be angry and feel betrayed if the poor prognosis is disclosed, or will they ultimately feel relieved?

• The bedside nurses and other involved health care professionals: Will they feel distress if they are expected to participate in a “conspiracy of silence,” or if the patient asks them a direct question about his or her prognosis?

• The hospital: Will disclosure or nondisclosure be in accord with organizational values such as respect for patients and compassion?

• The wider community and society: How will other and future patients be affected if they come to know that physicians at this particular hospital disclose or do not disclose poor prognoses to patients?

When applying consequentialism, the projected and accumulated benefits and harms for all the involved and interested parties and related to the reasonable options should be weighed against each other with the goal of maximizing benefit and minimizing harm.

One challenge of calculating consequences for the options in a given medical situation is how to be sufficiently thorough in anticipating what the projected outcomes and results might be. For many situations, experienced physicians and other clinicians, using their knowledge of previous cases and building on their collective wisdom, can reasonably project medical, legal, and psycho-social-spiritual consequences for the different options. A more problematic challenge when using consequentialism is determining how much weight to assign each of the various beneficial and burdensome consequences. Should a potential legal risk to the physician and hospital that could result from a specific bedside decision be given more weight than doing what is clearly in a patient’s best medical interests? In the end, after identifying and weighing projected burdens and benefits of reasonable options, physicians using consequentialism would be ethically required to choose and act on the option that is likely to produce the most benefit, and to avoid the option likely to bring the most harm.

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.

Casuistry in ethical analysis uses a parallel kind of reasoning. According to casuistry, attention must be given first to the particular details, features, and characteristics of the ethical dilemma at hand. Next, the goal is to identify known previous cases that are analogous and similar to the new case, and that had reasonably good and ethically supportable outcomes. If such a previous or paradigm case can be identified for which a consensus exists about right action, this previous case may provide ethical guidance for the new case at hand. A 25-year-old ICU patient with Down syndrome and an estimated cognitive ability of a 2- to 4-year-old is in need of blood transfusions. Her family members are Jehovah’s Witnesses and adamantly object to the transfusions, based on their religious beliefs. Using casuistry and appealing to similar cases, the intensivist notes that there is an ethical and legal consensus related to pediatric patients of Jehovah’s Witness parents to override parental objections to blood transfusions and to act in the patient’s best interests. Because the 25-year-old patient’s cognitive ability is similar to pediatric patients who do not have the cognitive ability to commit themselves knowingly and voluntarily to a set of religious tenets, the ethically supportable option in the pediatric cases (i.e., overriding parental objections to blood transfusions) could be extended to the case at hand.

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.

An effective use of casuistry by physicians and health care teams can lead to the building-up of a collective wisdom and practical experience from which to draw when new ethical dilemmas arise. Parallel again to a physician building up medical experience and wisdom over time, a physician can establish an ethical storehouse of knowledge and insight based on previous cases and dilemmas that he or she has experienced, heard about, or read about.

Practical Guidelines for Ethical Decision Making

In addition to the three methods discussed previously, the following four practical guidelines can facilitate the process of ethical decision making:

1. Recognize patients as partners in their own health care decisions.

2. Establish who has authority for decision making.

3. Establish effective communication with patients and their loved ones through routinely scheduled family meetings.

4. Determine patient values and preferences in an ongoing manner.

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

Authority for Medical Decision Making

Establishing the source of authority for making health care decisions for a patient is a common problem in critical care medicine. Although nonsuicidal adult patients with decision-making capacity retain this authority for themselves, many ICU patients are unable to participate in decision making. Whatever the patient’s condition, however, he or she remains the only true source of ultimate authority, and the physician must assemble and review the best available evidence of what the patient would want done. If the patient lacking decision-making capacity has prepared a living will or a durable power of attorney for health care, these documents should be obtained and reviewed. Close family members and loved ones also should be consulted; they may have spoken with the patient about what level of care the patient would want in the event of critical illness. In most, but not all, cases, these individuals know the patient best and have the patient’s best interest at heart.

Having reviewed the available evidence, the treating physicians should provide care that is consistent with their best understanding of what the patient would have wanted. The physician plays the role of guide and consultant, evaluating a patient’s medical problems, presenting and explaining options for diagnosis and management, and facilitating thoughtful decision making. Except in emergencies or when further treatment is clearly futile, physicians should not proceed with management plans until individuals with true authority to consent to or refuse treatment have approved the plans.

Communication

Explaining medical problems and treatment options to patients and their loved ones, determining patient quality-of-life values and desires, and achieving consensus for a management plan all require effective communication skills. Although well-developed communication skills are always an asset in medicine, communication can be particularly difficult and important in the ICU setting. Patients and their loved ones are often anxious or intimidated by the severity of the patient’s condition and by the many unfamiliar sights and sounds in the ICU. With many basic life functions taken over by the nursing and medical staff and their various machines and devices, and with visiting hours often limited, patients and their loved ones may feel powerless and experience anxiety or anger from the loss of control. Honest, effective, and recurrent communication can help alleviate these feelings and decrease the alienation that attends ICU admissions.

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.

Establishing effective communication requires time and planning. Physicians must remind themselves that although ICU care may become routine for them, it is rarely that way for the patients or their loved ones. Discussions with a patient’s family members or loved ones should occur either at the bedside, if the patient is able to participate, or in a private conference or waiting room; the hospital corridor is not an appropriate location. Because the patient and his or her loved ones are likely to feel overwhelmed by the patient’s illness and by the ICU environment, communication should be simple and to the point, with more technical details provided as requested. Encouraging the various parties to ask questions and express their feelings helps to counteract any intimidation they may feel and communicates to them that the physician cares about their concerns.

Finally, for communication to be effective, information should be conveyed in language and at a level of detail that the listener understands clearly. Medical jargon, an overly sophisticated vocabulary, excessive detail, or an inappropriate emotional tone can defeat what is otherwise a sincere effort at communicating. Physicians should always ask patients or their loved ones to summarize what they have heard; this is an easy way to evaluate their comprehension and to correct any misunderstandings.

Several types of inadequate communication occur regularly in ICUs. The most common problems result either from focusing on trends rather than on the patient’s overall condition or from drawing attention to favorable signs when the overall prognosis remains dismal. If a patient is unlikely to survive to ICU discharge but is not deteriorating, describing the patient to family members as stable is likely to mislead them. A more truthful report might be: “Your wife is as sick as any person could be, and the odds are overwhelming that she will not survive.” A similar problem arises in telling a couple that their son with multiple organ failure has improved when in fact there has been only a slight reduction in his oxygen requirement and his overall prognosis remains poor. Such inappropriate “good news” may make the physician feel better, but it can be cruelly misleading by engendering false hopes and needlessly interfering with the grieving process. It is essential to tell the truth and to provide accurate prognostic information.

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

The physician has a responsibility to ensure that effective communication has occurred. Not all physicians excel at communicating. When physicians find that effective communication is not taking place and conflict is developing, they should recruit assistance from an ethics consultant or another facilitator, such as a chaplain, social worker, or psychotherapist. Physicians should think of facilitators as valuable resources and not view their use as an admission of failure. ICU physicians are generally busy with a demanding set of patients. An ICU physician typically has limited time to talk to patients and patients’ families, yet these patients often have very high communication needs. Bringing in an ethics consultant or other facilitator to supplement the ICU team’s efforts can help meet these needs without overtaxing the ICU physicians.

Working with critically ill and dying patients can be extremely stressful and emotionally draining on a case-by-case basis and as an accumulating problem over time. Physicians may feel burned-out or may seek to protect themselves by creating emotional distance from their patients. Although physicians cannot delegate all communication responsibilities, the assistance of a facilitator can reduce the stress on all parties involved. Not only can facilitators contribute additional communication skills, but they also have more time for establishing rapport and, as third parties with fresh perspectives, can bring new insight to ethical dilemmas. We believe that such facilitators are underused, perhaps because physicians fear a loss of control over their patients. We recommend requesting a facilitator early whenever it seems that ethical decision making may be difficult.