Medical ethics is a one branch of bioethics. The ethical framework generally used for medical decision making is reasoning from ethical principles [4,5,6] (Table 211.1). The oldest principles are beneficence and nonmaleficence, and other principles have been described in recent decades. Justice, or fairness, implies that patients will be given the treatment that is indicated for their condition without regard to social, economic, ethnic, or other attributes. Unfortunately, there may be times when resources such as ICU beds or mechanical ventilators are limited and ICU physicians may need to work with hospital administration and the community to clarify how care may be rationed [7]. At the time this chapter was written, a global influenza pandemic was predicted [8,9]. Patient autonomy has, in recent years, become foremost among ethical principles. This emphasis on the importance of individual choice has been
influenced by numerous social changes and increasing distrust of the corporations and medical centers. Several highly publicized instances of inappropriate medical research in the United States during 1960 to 1980 led to legislation and policies defining the place of informed consent in research and in medical care. Autonomy is the foundation for the practice of informed consent for medical research and clinical care. Autonomy is exercised by patients but must be enabled by physicians and is based on an assumption that the competent informed person can weigh risks and benefits and make a decision that balances their medical needs and personal values. Autonomy requires that the patient or surrogate is able to deliberate about personal goals and act under their own direction (self-governance). The joint participation of physician and patient in “shared decision making” is recommended [10,11]. Unfortunately, it is usually not possible for ICU patients to share decision making due to the nature of their illness and life support devices. The physician plays a role by acknowledging the importance of autonomy and ensuring that a surrogate is identified as a decision maker.

Acknowledging the importance of autonomy emphasizes the role of the individual patient in decision making. To make decisions, the patient or surrogate must have information about the possible risks and benefits of an intervention. The ICU physician must provide information about the diagnosis and prognosis of the critical illness that will be used in a decision of consent or refusal. The competent and informed patient has the ability to consent to, or refuse, medical interventions or research. Because autonomy means that a person has ability to make decisions on all aspects of their life, the autonomous person may choose to not only oppose the advice of physicians, family, and friends, but may also choose to act contrary to their own previously expressed wishes and can change their mind. If a person lacks autonomy then their ability to speak for themselves can be protected by referring to a substitute such as previously expressed wishes or a surrogate decision maker.

Patient autonomy alone is not sufficient to describe the patient–physician relationship and the physician remains obligated to their own moral responsibilities and to acknowledging the values of the patient. In practice, the principles already described represent different values that must be considered and balanced against each other when reasoning toward a treatment decision by asking the question: how much potential benefit at how much risk is acceptable to this critically ill person? Beyond these generally accepted principles there are many other perspectives that may influence decision making, such as religious authority, the importance of relationships, the rights of the patient, or the value of patient care to society. It is possible that patients, families, or ICU staff will appeal to other ethical perspectives when reasoning toward a treatment decision, and while the patient is free to reason from their own ethical value system to guide their choices, the four principles are the standard guiding principles for the ICU physician.

To exercise autonomy, a patient must have the capacity to make a choice. Determining whether a patient has capacity occurs daily in the ICU and the critical care physician should be adept at this assessment. Physicians use criteria listed in Table 211.2 [12,13] and also must comply with local hospital policy and state law when determining decision-making capacity. Decision making capacity is decision specific; that is, patients may have the capacity to make some decisions but not other decisions. Capacity is determined one decision at a time by a physician (in contrast to competency that is determined by the courts).

All of the criteria listed in Table 211.2 must be present, or the patient lacks capacity. When the critically ill person is unable to make decisions, the physician must document lack of capacity and plans for making decisions. Historically, physicians and/or a capable family member made decisions. Currently, patients are likely to use advance directives or assign surrogate decision makers to make medical decisions should they become incapacitated. Patients with terminal disease can address situations where death is imminent and there is no hope of recovery by preparing advanced directives, or living wills. Advance directives are also useful for patients who indicate that they would refuse life support under any circumstance. However, in many cases, the circumstances of a patient’s critical illness may be unanticipated, prognosis may be unknown, and written directives may be ambiguous. In the absence of a clear advanced directive, surrogate decision makers provide a “substituted judgment” for the incapacitated patient based on their knowledge of the patient’s values and previous statements made by the patient. Surrogates are most often relatives of the patient either through legal authorization by the patient prior to their illness, or as permitted by state laws. To fulfill the role, a surrogate must disregard their own values and represent the values of the patient. An incapacitated patient can accept or refuse therapy through a surrogate. Refusal of therapy has been legally guaranteed to patients for decades, and the results of landmark cases of permanently incapacitated patients in persistent vegetative states refusing therapy through surrogates can be extended to ICU patients. Cases such as Quinlan (1976), Cruzan v. Missouri (1990), and Schiavo (2003–2005) led to laws that permit refusal of therapy through a surrogate. In many states, surrogates are required to now bring forward “clear and convincing evidence” in verbal statements from the patient prior to incapacitation to justify refusal of therapy [14,15,16,17].

Physicians identify lack of capacity and confirm the need for a surrogate decision maker. Physicians may have discussed with the patient their understanding of, and wishes for, life support prior to critical illness. But, although obligated to act in the best
interest of patients, there is a limit to the authority of physicians and they cannot make value decisions without taking into account the wishes of the patient. Physicians may have limited information about the values of a patient, they may have a very different set of personal values, or may have financial conflicts of interest with patient wishes [4]. Physicians cannot function as a patient surrogate to make decisions, but, in the capacity as treating physician, can refuse to perform procedures or provide care that they believe are unnecessary or non-beneficial [18,19,20,21]. Usually patients or surrogates can be dissuaded from unnecessary care by engaging in a thorough discussion of the appropriate care, reasons for refusing care, and offering a second opinion. Physicians are not compelled to perform services that violate their own moral values and can arrange for another physician to care for the patient. When patient wishes are known or communicated through a surrogate, the physician should attempt to carry these out, and obtain consent for procedures. Although some procedures can be justified without consent in the absence of previously expressed wishes on an emergency and life-saving basis, unless there is a justification physicians risk the charges of battery or negligence if procedures or other interventions are provided without consent or after refusal of consent [5,22,23].

Remarkably, surveys of ICU physicians have found that decision making practice varies greatly and often does not involve the patient. Some physicians report that they continue life support even when there is little hope of benefit from intensive care. The results of the SUPPORT study indicated that physicians did not consistently document or write a DNR order for patients that did not wish to have cardiopulmonary resuscitation (CPR) [24]. A survey in 1999 of ICU physicians from 16 European countries indicated that 73% of ICU’s frequently admitted patients with no hope of survival. DNR orders were followed only 58% of the time. Yet, on the other hand, many physicians withheld therapy for patients who had no prospect of meaningful life, or deliberately administered large doses of drugs until death ensued. Only 41% of physicians surveyed felt ethical issues should involve patient and/or family [25].

Many patients with terminal illnesses will come to the ICU for resuscitation or monitoring prior to their deaths. CPR has little likelihood of improving survival of patients with terminal illnesses, and is usually regarded as nonbeneficial. Such a procedure with a low likelihood of success can be regarded as not in the best interest of the patient. This differs from medical futility, since futile care is defined as having no physiological rationale or care to which the patient has already failed to respond [4,18]. The term “futile” carries an important meaning and should be used carefully and accurately. When death is imminent and treatment has failed, then withholding futile care is supported by legal precedent. However, when death is not imminent, physicians may not be able to predict outcome. In one study, daily surveys of ICU staff found that physicians and nurses were unable to predict survival and quality of life 6 months after ICU. Nurses were incorrect in 58% of 45 patients and physicians were incorrect in 27% of 26 patients. Only one of the survivors about whom physicians believed care was futile reported poor quality of life 6 months after ICU [26]. A larger study that investigated determinants of withdrawal of mechanical ventilation found that physician’s prediction of low likelihood of survival (< 10%) was a factor associated with withdrawal of mechanical ventilation and/or death [27]. In this study 3.6% of patients survived to hospital discharge after withdrawal of mechanical ventilation. A decision to withdraw support in this study was associated significantly with physician’s perception of the patient’s preferences about the use of life support. The ICU physician needs to know the precise hospital and legal definitions for “futility” and avoid invoking the term in cases where care is perceived as carrying a low likelihood of success or sustaining an unacceptable quality of life that is better termed nonbeneficial. If there is a plan to withhold support or procedures, for example, CPR, and the procedure is not strictly futile, then information should be provided about the procedure and rationale should be explained to the patient/surrogate [20,21,28].

Ethics committees or ethics consultants provide an additional resource for resolving ethical conflicts. The committee is an objective “third party” not previously involved in disputes of the case. Committees review the medical and ethical and psychosocial aspects of the case and provide an ethical analysis. Committees can also provide social and emotional support to families and may be able to discuss and explain the ethical issues for longer periods of time than physicians and nurses. Since most ethics consultants are employed by the hospital, families may perceive a bias in favor of physicians or an attempt to protect the interests of the hospital. However, ethics consultants are usually well received by both physicians and patients/surrogates [28,29]. In addition to resolving conflicts, ethics consultations are associated with decrease in the duration of ICU length of stay and use of life-prolonging treatments for patients who ultimately do not survive [29].

Numerous studies and ICU practice guidelines over the past decade emphasize the importance of effective communication with, and support of, families of critically ill patients. Communication about plans for patient care most often takes place between physicians and family members, rather than between physicians and patients [30]. Discussions with families frequently occur when physicians have decided that continuation of care will be ineffective, but interviews with families indicate that more than half of family and patient representatives do not fully understand the prognosis and treatment plan [31]. To facilitate shared decision making, in which physician and family jointly reach a decision, communication must be more effective and needs to begin early during the ICU stay [10,11].

Physicians are more likely to achieve effective communication when meetings begin earlier in the course of care. In one study, proactive, formal, multidisciplinary meetings were held within 72 hours of ICU admission for patients with clinical features including a predicted ICU stay longer than 5 days, or predicted mortality greater than 25%. In these meetings the medical facts, the patient’s perspectives on death dying and critical care, the care plan and the criteria for determining success of the care plan, were discussed. Intensive communication decreased ICU length of stay and allowed earlier access to palliative care [32]. Consistent proactive communication with families for updates on progress and encouragement to use advanced support when appropriate is recommended [10,11]. Improved communication can also be facilitated by using a private place for discussion, listening, empathic statements, acknowledging family emotions, focus on patient values and treatment wishes, clear explanation of the principle of surrogate decision making, assurance that the patient will not suffer, and support for the decisions made by the family [32,33,34,35,36,37]. A simplified mnemonic for important elements of effective physician–family communication is VALUE (Value and appreciate what is said by family members, Acknowledge the family members’ emotions, Listen, Understand who the patient is as a person, Elicit questions from the family members) [39].

Families of ICU patients suffer and may develop long-term mental health issues related to the trauma of witnessing the ICU treatment or end-of-life care of a loved one. Symptoms can include posttraumatic stress disorder (PTSD), anxiety, and depression [33,40]. It is now clear that physicians have an opportunity to lessen the suffering of the family members through effective communication with families about prognosis and care of ICU patients. In one multicenter trial [38], proactive end-of-life conferences with relatives of patients dying in French ICUs resulted in better long-term psychological outcomes in the family members when compared with customary end-of-life conferences. The proactive communication intervention followed detailed guidelines [41], physicians focused on achieving the elements of effective communication summarized by the mnemonic VALUE, and family members received a brochure on bereavement. Physician–family conferences were longer (median 30 minutes vs. 20 minutes) and relatives spent more time talking (median 14 minutes vs. 5 minutes) in the intervention group. Relatives that participated in the proactive intervention had lower prevalence of PTSD symptoms, depression, and anxiety when interviewed 90 days later [38].

Ethical reasoning is part of shared decision making about ICU care for individual patients usually conducted together with a patient surrogate. Family conferences are important for facilitating care of the incapacitated ICU patient and are a forum for providing accurate prognostic information; whether the prognosis is that the patient is expected to survive or, at the other extreme, unlikely to benefit from critical care [32,42]. When a decision is made to forgo life-sustaining treatments and change to end-of-life care, effective communication serves the best interests of the patient and can improve the psychological well being of the surviving relatives.

Discussions that prepare families for the death of a patient or to discuss withdrawal of life support are an increasingly important part of a critical care physician’s practice [30,43,44,45]. Interviews with surrogate decision makers suggest that accurate and timely prognostic information is preferred [46]. There was, however, no clear preference among surrogates (with surrogates divided for and against) about whether it was appropriate for physicians to make a recommendation about withdrawing life support [47]. Surrogate perceptions of communication and end-of-life care can be improved [48,49] and quality improvement can be assessed by means of several survey tools or outcome measures [50,51,52].

Among the ethical principles described in the preceding section, autonomy is emphasized in the United States. In contrast, this may not always be the case in European countries, where regional and national practices regarding the role of families in decision making, and legal and medical opinions about withholding or withdrawing life support, vary widely [25,53,54,55,56,57].