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CHAPTER 18: Providing Palliative Care and Withholding or Withdrawing Life-Sustaining Therapy 123
Observation Tool (CPOT) are available and ICU clinicians can review A significant impediment to meeting the spiritual needs of ICU
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each to determine which best meets the needs of their patient populations patients and families may be the gap between patients and physicians
and clinicians. with respect to the importance each group places on faith or religion.
In addition to bedside assessment tools, ICU clinicians should con- Information specific to critical care clinicians is lacking but surveys of
sider a patient’s specific clinical risk factors for pain including a history internal medicine and family practice physicians find a majority do not
of chronic pain syndromes, active clinical problems associated with believe it is appropriate to inquire about patients’ religious beliefs unless
pain, and the invasiveness of interventions and ongoing therapies. the patient is dying and internists are less likely to endorse religious inqui-
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Another mechanism for assessment can include surrogate (family or ries even in this clinical context as compared to family practice physi-
clinician) reporting of a patient’s pain, which has reasonable reliability cians. With respect to bridging this gap and meeting the spiritual needs
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with a sensitivity of 80% and a specificity of 68%. Finally, the use of of ICU patients and families, there is little specific, empiric information
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an analgesic trial to evaluate pain can be simultaneously diagnostic and to guide ICU clinicians. However, the fundamental communication tech-
therapeutic particularly when guided by a bedside pain assessment tool niques described in Tables 18-1 and 18-2 are appropriate techniques to
to gauge efficacy of the analgesic therapy. 72 elicit patient’s and family’s values including their religious and spiritual
In addition to a standardized pain assessment that is systematically values. ICU clinicians should inquire about and acknowledge statements
implemented, four fundamental tenets of pain management should regarding faith or religion as with other statements that give meaningful
be adhered to in the ICU, especially in the context of end-of-life care. insight into the patient as an individual. Finally, in-depth spiritual sup-
First, clinicians should “assume pain present” and opt to treat pain port is generally best left to professionals formally trained in meeting
when assessments are unclear and pain is part of the differential diag- these needs such as chaplains and other spiritual care specialists. 84
nosis. Second, pain is more effectively and easily controlled when it
is identified and treated sooner rather than after it has accelerated in WITHHOLDING OR WITHDRAWING
severity. Third, analgesics should be prescribed in patients with potential LIFE-SUSTAINING THERAPY
pain prior to administration of sedatives. Fourth, patients may develop
tolerance to opioids so ongoing reassessments are necessary to maximize Withdrawing or withholding one or more aspects of life-sustain-
symptom control and monitor for potential adverse reactions. Pain ing treatment is a common practice among patients who die in an
2
management regimens in the ICU will typically rely on opioids and the ICU although substantial international variation has been described.
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choice and dosing regimen will depend on a variety of specific clinical A prospective, descriptive survey of 131 ICUs in 110 hospitals in 38
factors. There is little high-level evidence to guide ICU clinicians, US states found that 70% of deaths were preceded by withholding or
although a useful review of the nuances related to selection, administra- withdrawing certain treatments such as CPR or mechanical ventila-
tion, dosing, adverse effects, and adjuvant analgesic therapies from a tion. A similar report from 37 ICUs in 17 European countries found
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critical care perspective is available from Erstad et al. 2 that 77% of deaths were preceded by withholding or withdrawing a life-
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Symptom assessment and management in the ICU must also incor- sustaining treatment. Other reports found lower frequencies of this
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porate the value of the spontaneous awakening trial and recent efforts practice ranging from 38% in Spain, 49% in India, 53% in France,
to reduce sedation in critically ill patients. 77,78 Although spontaneous and 59% in Hong Kong. It is likely that different cultural and religious
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awakening trials have clearly been shown to improve patient out- backgrounds influence this international variation in clinical practice.
comes and are not associated with increased long-term symptoms,
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it is important that these trials be conducted in a way that ensures ■ ETHICAL CONSIDERATIONS OF WITHHOLDING
patient comfort. In addition, spontaneous awakening trials may not OR WITHDRAWING LIFE SUSTAINING THERAPIES
have value for patients if the goals of care have changed to comfort Critical care professional societies 93,94 and many ethicists assert that
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measures only. there is not an ethical difference between withholding and withdrawing
■ SPIRITUAL SUPPORT a life-sustaining therapy. However, this opinion is not universally held
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and is probably not in keeping with the opinion of many in the general
The role that faith and/or religion play in coping with illness and end- public. Religion has important bearings on beliefs around end-of-life
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of-life decision making from the patient and family perspective cannot care and on the acceptability of withholding versus withdrawing life-
be overemphasized. Patients and families cite religion as one of the most sustaining therapies. Studies suggest that physicians from some religions
important factors enabling them to cope with medical illness and in a (such as Jewish or Greek Orthodox) are more likely to withdraw life-
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survey of 1006 members of the general public, 68.3% responded that their sustaining therapies compared to physicians of other religions (such as
religious beliefs would guide decision making if they were critically injured Catholic or Protestant). From the patient perspective, religion is an
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and 57% reported that God could heal even if doctors concluded further important determinant of illness perceptions among critically ill patients
treatment was futile. In qualitative investigation among families of ICU and families. Therefore, effective communication and a decision-
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patients, religion was one of four themes found to be associated with sur- making framework, as suggested in Figure 18-1, become important for
rogate’s doubts regarding physician predictions of medical futility and the ICU clinicians to navigate the complexities inherent in our increasingly
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value of spiritual support during ICU end-of-life discussions was sponta- multicultural societies. ICU clinicians should focus on patient’s and fam-
neously cited by families even a year after the patient’s death. Congruent ily’s values and the patient’s clinical context as the fulcrum for decisions
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with these reports, a prospective, multicenter, cohort study of patients with regarding withholding or withdrawing ICU treatments and be mindful to
advanced cancer found that religious-based coping increased utilization of avoid institutional pressures regarding withholding or withdrawing life-
intensive life-prolonging care including mechanical ventilation and CPR sustaining therapies. In the United States, the legality of withdrawing
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during the last week of life. This remained true after adjusting for poten- life-sustaining therapies is supported by the ethical principle of auton-
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tial confounders such as race, age, and prior advance care plans. Patients omy, which includes the rights of patients and/or surrogates to engage in
and families that receive spiritual support in the ICU report greater satis- informed consent and informed refusal for medical treatments. 101
faction with having their spiritual needs met and higher overall satisfaction Although a shared decision-making framework is recommended,
with ICU care. Additionally, patients whose spiritual needs are largely or clinical situations can emerge where there is irresolvable disagree-
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completely supported by their medical teams, receive more hospice care, ment between surrogates and clinicians regarding realistic treatment
less aggressive care prior to death, and experience higher quality of life goals in the ICU. While relatively uncommon, conflict between ICU
prior to death. Thus, professional societies and other organizations have clinicians and surrogates imposes substantial distress on clinicians,
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identified spiritual care of patients and families as a measure of quality ICU and has been termed by some as “a tyranny of autonomy.” The rela-
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end-of-life care and a component of comprehensive ICU care. 86,87 tive merit of cardiopulmonary resuscitation often becomes a nidus for
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