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CHAPTER 18: Providing Palliative Care and Withholding or Withdrawing Life-Sustaining Therapy 121

found a difference in overall mortality between their control and inter- significant deficiencies in the quality of communication 40,41 as well as
vention groups suggesting proactive, palliative care interventions do resultant adverse psychological outcomes among families have been
not shorten survival. Furthermore, each found high rates of acceptance reported. Analyses of audiotaped ICU family conferences have found
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among ICU clinicians and families. specific opportunities for improvement including listening and respond-
■ THE INTERFACE BETWEEN CRITICAL CARE, ing to questions, providing emotional support, and addressing palliative
or ethical principles. Other analyses of these data found that when
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END-OF-LIFE CARE, AND PALLIATIVE CARE physicians spoke less and families spoke more during ICU family con-
44
In the United States, 22% of deaths are associated with an ICU admis- ferences, families’ ratings of the quality of communication were higher.
Notably, families of patients who survive report less satisfaction with
sion, an observation that may seem incongruous with the notion of communication than families of patients who die, suggesting a broad
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intensive care as representing aggressive attempts at cure. However, opportunity for improvement in communication regardless of antici-
given that the leading causes of death in the United States often incor- pated survival status. 45
porate a trajectory that includes an unexpected and potentially revers- Communication about end-of-life care in the ICU can be especially
ible decline, it becomes understandable why a substantial proportion of challenging. This communication is complicated by several factors:
US deaths are accompanied by ICU admissions. The top four causes of There is typically reliance on surrogate decision makers, ICU clinicians
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death for Americans today are chronic health conditions and include often lack a longitudinal relationship with the patient and family, and
heart disease, cancer, stroke, and chronic respiratory diseases. 33 the time between consideration of end-of-life care and death is often
The trajectory of declining health status preceding death has been con- brief. An important objective of communication about end-of-life care
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ceptualized as assuming one of several patterns. 34,35 The most common in the ICU is to determine the goals of care for the patient. Physicians
pattern is of chronic illness with progressive organ failure punctuated by have an obligation to provide information on the diagnosis and progno-
acute exacerbations and incomplete improvement. Examples of condi- sis whereas families are generally the best source of information about
tions that often assume this pattern include congestive heart failure and patients’ beliefs and values. The recommended framework for end-of-
chronic respiratory diseases. A second common pattern is observed in life decisions is a shared decision-making model in which the physician
terminal conditions such as advanced cancer where patients often expe- and family jointly assume responsibility for decisions about end-of-life
rience good functional status until an acute, rapid decline followed by care. 48,49 Substantial variation, however, is observed in the degree to
death. Frailty that may accompany advanced age or progressive demen- which families want to be responsible for decisions about end-of-life
tia generally imposes a poor functional status over an extended period care. Some family members favor a shared decision-making role with
of time prior to death. physicians 50,51 whereas others do not wish to be involved in decision
Acute care hospitalizations may occur at any stage during declining making or conversely prefer the physician not be involved in decision
health status and especially during an acute exacerbation of a chronic making. 52-54 There is also substantial variation in the degree to which
health condition. These three conceptual representations of health status physicians report involving families in ICU discussions about end-of-
prior to death, combined with inherent uncertainty in prognostication, life care. Families in the United States are traditionally more involved in
help explain why the majority of Americans die in an institutional setting. these decisions than families in Europe and nearly 100% involvement
55
Fifty-eight percent of Americans die in an acute care hospital, 21% die in among families is reported in some Asian countries. 56,57
a nursing home or other chronic care facility, and 21% die at home. The In order to accommodate the variation in preferences among families,
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reliance on acute care hospitals as the location for end-of-life care often one recommended procedure is offered in Figure 18-1. 58,59 This approach
encourages the option of an ICU admission, and in fact having increased begins with a default position of shared decision making. The physician
ICU resources available is a significant predictor of using critical care ser- assesses prognosis and the degree of prognostic certainty and offers to
vices during a terminal hospitalization. Thus, ICU clinicians often find assume a greater burden of decision making as prognosis worsens and
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themselves providing end-of-life care to many ICU patients and families certainty increases. This framework assumes a certain degree of confi-
during their careers. Improved communication about end-of-life care dence in physician prognostication, which has limitations, but is none-
and advance care planning may help limit terminal ICU admissions for theless important for families to make informed choices.
some patients, but the ICU will always remain a setting where death and
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end-of-life care are relatively common. Furthermore, many patients who
survive the ICU will also have important palliative care needs. Therefore,
critical care clinicians must become skilled at providing palliative care. Default starting place of shared decision making

PROVIDING PALLIATIVE CARE 1. Assess prognosis and certainty
IN INTENSIVE CARE UNITS
Whether the end-of-life care provided in ICUs is also palliative care is an
important distinction and as described above should necessarily include 2. Assess family preference for role in decision making
the three main principles of palliative care: relief of suffering, collabora-
tive interdisciplinary care, and patient/family-centered care. Assistance 3. Adapt strategy based on patient and family factors
from formal palliative care or ethics teams can be beneficial. Asking
whether improved palliative care should be achieved through involve-
ment of palliative care specialists or training in palliative care for critical
care clinicians raises a false dichotomy: High-quality palliative care in Spectrum of family role in decision making
the ICU will require both approaches simultaneously. Discussed below
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are approaches that ICU clinicians can integrate into their practices to Parentalism or Autonomy or
better meet the palliative care needs of their patients including improv- doctor decides family decides
ing communication, pain management, and spiritual support. Shared decision
■ COMMUNICATION making

Effective communication between patients, families, and clinicians in FIGURE 18-1. Three-step approach to patient- and family-centred decision making, which
advocates for a default starting place of shared decision making that can be modified by prog-
ICUs is a cornerstone to providing patient/family-centered care, yet nosis and certainty of prognosis and also by family preferences for role in decision making. 58,59

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