The traditional goals of intensive care are to reduce the morbidity and mortality associated with critical illness, maintain organ function, and restore health. Despite technological advances, death in the intensive care unit (ICU) remains commonplace. Death rates vary widely within and among countries and are influenced by many factors.1 Comparative international data are lacking, but an estimated one in five deaths in the United States occurs in a critical care bed.2
Examples of the ABCDs of Dignity-Conserving Care.
In this review, we address the concept of dignity for patients dying in the ICU. When the organ dysfunction of critical illness defies treatment, when the goals of care can no longer be met, or when life support is likely to result in outcomes that are incongruent with patients’ values, ICU clinicians must ensure that patients die with dignity. The definition of “dying with dignity” recognizes the intrinsic, unconditional quality of human worth but also external qualities of physical comfort, autonomy, meaningfulness, preparedness, and interpersonal connection.3 Respect should be fostered by being mindful of the “ABCDs” of dignity-conserving care (attitudes, behaviors, compassion, and dialogue)4 (Table 1). Preserving the dignity of patients, avoiding harm, and preventing or resolving conflict are conditions of the privilege and responsibility of caring for patients at the end of life. In our discussion of principles, evidence, and practices, we assume that there are no extant conflicts between the ICU team and the patient’s family. Given the scope of this review, readers are referred elsewhere for guidance on conflict prevention and resolution in the ICU.5,6
The concept of dying with dignity in the ICU implies that although clinicians may forgo some treatments, care can be enhanced as death approaches. Fundamental to maintaining dignity is the need to understand a patient’s unique perspectives on what gives life meaning in a setting replete with depersonalizing devices. The goal is caring for patients in a manner that is consistent with their values at a time of incomparable vulnerability, when they rarely can speak for themselves.7 For example, patients who value meaningful relationships may decline life-prolonging measures when such relationships are no longer possible. Conversely, patients for whom physical autonomy is not crucial may accept technological dependence if it confers a reasonable chance of an acceptable, albeit impaired, outcome.8 At issue is what each patient would be willing to undergo for a given probability of survival and anticipated quality of life.
On the Need for Palliative Care
The coexistence of palliative care and critical care may seem paradoxical in the technological ICU. However, contemporary critical care should be as concerned with palliation as with the prevention, diagnosis, monitoring, and treatment of life-threatening conditions.
Curative and Palliative Approaches to Care throughout a Critical Illness.
The World Health Organization defines palliative care as “an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.”9 Palliative care, which is essential regardless of whether a medical condition is acute or chronic and whether it is in an early or a late stage, can also extend beyond the patient’s death to bereaved family members10 (Figure 1).
Eliciting the Values of Patients
Sometimes it is too late. A precipitating event prompting an ICU admission that occurs within a protracted downward trajectory of an illness may be irreversible. When clinicians who are caring for a patient in such a scenario have not previously explored whether the patient would want to receive basic or advanced life support, the wishes of the patient are unknown, and invalid assumptions can be anticipated. Effective advance care planning, which is often lacking in such circumstances, elicits values directly from the patient, possibly preventing unnecessary suffering associated with the use of unwelcome interventions and thereby preserving the patient’s dignity at the end of life.
Regardless of the rate and pattern of decline in health, by the time that patients are in the ICU, most cannot hold a meaningful conversation as a result of their critical condition or sedating medications. In such cases, family members or other surrogates typically speak for them. In decisions regarding the withdrawal of life support, the predominant determinants are a very low probability of survival, a very high probability of severely impaired cognitive function, and recognition that patients would not want to continue life support in such circumstances if they could speak for themselves.11 Probabilistic information is thus often more important than the patient’s age, coexisting medical conditions, or illness severity in influencing decisions about life-support withdrawal.
Discussions can be initiated by eliciting a narrative from patients (or more commonly, from family members) about relationships, activities, and experiences treasured by the patient. The use of engaging, deferential questions, such as “Tell me about your . . .” or “Tell us what is important to . . . ,” is essential. Clinician guidance for constructing an authentic picture of the incapacitated patient’s values is offered in the Facilitated Values History,8 a framework that provides clinicians with strategies for expressing empathy, sensitively depicting common scenarios of death, clarifying the decision-making role of surrogates, eliciting and summarizing values most relevant to medical decision making, and linking these values explicitly to care plans.