The Dying Person and Intractable Suffering
Suffering at the End of Life (EOL)
Patient perspectives: Published in 2013, a prospective observational study of 64 patients who died of cancer serially assessed symptoms, symptom intensity, and whether symptoms were unbearable. Weakness was the most prevalent symptom (93% of patients). Fifty-one percent of patients rated their weakness as high intensity; of these, 84% rated their suffering as unbearable. Pain, loss of control over one’s life, and fear of future suffering were unbearable when symptom intensity was high.
Informal caregiver perspectives: Caregiver suffering is a complex construct that refers to severe distress in caregivers’ physical, psychosocial, and spiritual well-being. A number of studies have reported strong associations between patients’ and caregivers’ emotional states. In a systematic review of 19 descriptive studies of caregivers during the palliative, hospice, and bereavement phases, analysis of patient-caregiver dyads found mutuality between the patient’s condition and the caregiver’s response. Caregivers were found to be at increased risk for physical and psychological burden across studies, with caregiver distress sometimes exceeding that of the patient.
Several studies have categorized caregiver suffering with the use of dyadic analysis. In a qualitative study involving 22 dyadic semistructured interviews, caregivers dealing with advanced medical illness, including cancer, reported both unique and shared forms of suffering. Suffering was characterized as powerlessness, threat to the caregiver’s identity, and demands exceeding resources. Because caregiver suffering can affect patient well-being and result in complicated bereavement, early identification and support of caregiver suffering are optimal.
Palliative sedation may be defined as the deliberate pharmacologic lowering of the level of consciousness, with the goal of relieving symptoms that are unacceptably distressing to the patient and refractory to optimal palliative care interventions. In considering a patient’s request for palliative sedation, clinicians need to identify any personal biases that may adversely affect their ability to respond effectively to such requests. Several points need to be borne in mind:
- There is no evidence that palliative sedation shortens life expectancy when applied in the last days of life.
- The goal of palliative sedation is to relieve intractable suffering.
- Discussions about palliative sedation may lead to insights into how to better care for the dying person. For example, requests for palliative sedation may create an opportunity to understand the implications of symptoms for the suffering person and to encourage the clinician to try alternative interventions to relieve symptoms.
- When dealing with requests for palliative sedation, health care professionals need to consider their own cultural and religious biases and reflect on the commitment they make as clinicians to the dying person.
The following questions may serve to organize discussions about the appropriateness of palliative sedation within health care teams and between clinicians, patients, and families:
- What are the indications for palliative sedation?
- Has the patient received optimal palliative care short of palliative sedation?
- What is the intended level of consciousness?
- Will the palliative sedation be maintained continuously until death or adjusted to reassess the patient’s symptom distress?
- What are the plans for discontinuation or maintenance of hydration, nutrition, or other potentially life-sustaining treatments (LSTs)?
Indications for palliative sedation: The two broad indications for palliative sedation are refractory physical symptoms and refractory existential or psychological distress. A retrospective study at the MD Anderson Cancer Center in Houston included 1,207 patients admitted to the palliative care unit. Palliative sedation was used in 15% of admissions. The most common indications were delirium (82%) and dyspnea (6%). The use of palliative sedation for refractory existential or psychological symptoms is highly controversial. In a survey of the attitudes and experiences of more than 1,000 U.S. physicians toward intentional sedation to unconsciousness until death revealed that 68% of respondents opposed palliative sedation for existential distress. Of note, only 10% of physician respondents had prescribed palliative sedation in the preceding 12 months. A previous survey conducted by the same research group reported that only 18% of surveyed physicians objected to “sedation to unconsciousness in dying patients” without a specified indication.
One potential objection or concern related to palliative sedation for refractory existential or psychological distress is unrecognized but potentially remediable depression. (Refer to the Requests for Hastened Death section of this summary for more information.)
Further objections or concerns include (1) whether the principle of double effect, the ethical basis for the use of palliative sedation for refractory physical distress, is adequate justification; and (2) cultural expectations about psychological or existential suffering at the EOL. The principle of double effect is based on the concept of proportionality. It states that the intended effect of palliative sedation (relief of suffering) may justify the foreseeable but unintended consequence (shortening of life expectancy or loss of ability to interact with loved ones) if the intended (positive) outcome is of greater value than the unintended (negative) outcome. Thus, in the case of palliative sedation for refractory psychological or existential distress, the perception that palliative sedation is not justified may reflect a devaluation of the distress associated with such suffering or that other means with fewer negative consequences have not been fully explored.
Intended level of sedation: Another decision is whether the intended level of sedation is unconsciousness or a level associated with relief of the distress attributed to physical or psychological symptoms. In a survey of U.S. physicians, two-thirds of respondents felt that unconsciousness was an acceptable unintended consequence of palliative sedation, but deliberate unconsciousness was unacceptable. This finding may relate to the sense of proportionality. A qualitative study of 54 physicians who had administered palliative sedation indicated that physicians who were more concerned with ensuring that suffering was relieved were more likely to administer palliative sedation to unconsciousness. Physicians who chose mild sedation were guided more by their assessment of the patient’s condition.
Intended duration of sedation: If the clinician anticipates that a distressing symptom will improve with time, then the clinician should discuss with the patient any recommendations about a deliberate reduction in level of consciousness to assess symptom distress. In the published experience cited earlier, palliative sedation for delirium or dyspnea was reversible in 23% of patients admitted to a palliative care unit.
Role of potentially LSTs during palliative sedation: The intent of palliative sedation is to relieve suffering; it is not to shorten life. The decision to discontinue or maintain treatments such as artificial hydration or nutrition requires a review of the patient’s goals of care and the potential for benefit or harm. In general, the absence of evidence for benefit seems to justify recommendations to forgo LSTs in the context of palliative sedation. On the other hand, open lines of communication and a respectful and responsive awareness of a patient’s preferences are important to maintain during the dying process, so the clinician should not overstate the potential risks of hydration or nutrition. There is consensus that decisions about LSTs are distinct from the decision to administer palliative sedation.
Requests for Hastened Death
Potential reasons for requests: Requests for hastened death or statements that express a desire to die vary from expression of a temporary or passive wish to a sustained interest in interventions to end life or a statement of intent to plan or commit suicide. Reliable data on the frequency of requests for hastened death are not available.
Requests for hastened death provide the oncology clinician with an opportunity to explore and respond to the dying patient’s experience in an attentive and compassionate manner. From the patient’s perspective, the reasons for requests for hastened death are multiple and complex and include the following:
The cited studies summarize the patient’s perspectives. Surveys of health care providers demonstrate similar findings and reasons.
Responding to requests: Recommendations are based on principles of counseling and expert opinion. Specific studies are not available. The first and most important consideration is for health care providers to maintain awareness of their personal reactions to requests or statements. It is imperative that the oncology clinician expresses a supportive and accepting attitude. Providers who are too uncomfortable to engage in a discussion need to explain to a patient the need for a referral to another provider for assistance. Other prudent advice includes the following:
- Be open to concerns.
- Assess other contributing factors.
- Respond to specific issues.
- Conclude the discussion with a summary and a plan.
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