Our data suggest that the pursuit of a hastened death was motivated by multiple, interactive factors in the context of progressive, serious illness. These patients considered a hastened death over prolonged periods of time and repeatedly assessed the benefits and burdens of living versus dying. None of the participants cited responding to bad news, such as the diagnosis of cancer, or a depressed mood as motivations for interest in hastened death. Lack of access to health care and lack of palliative care also were not mentioned as issues of concern. These findings are comparable to those reported in Oregon.6,16
This report emphasizes the importance of 3 general sets of issues: the effects of illness (e.g., physical changes, symptoms, functional losses), the patient's sense of self (e.g., loss of sense of self, desire for control), and fears about the future. The cases also illustrate that pain is often not the most salient motivating factor. Thus, this report corroborates and expands known findings.2,5,6,15,16,21–23
This research adds to the literature by providing rich descriptions from patients and family members about interactions between these issues and the meaning that patients ascribe to current and/or anticipated illness experiences.
Many participants identified the effects of the illness on two very personal attributes that often give life meaning: a person's desire for control and sense of self. When the effects of the illness and/or treatment attack these deeply personal values, a hastened death is viewed as a means to stop this process and minimize the damage. These feelings have been reported among patients with AIDS.17,24
The influence of some of the issues in this study differed from previous reports. For example, while the effect of pain on patients' decisions to hasten death has been widely discussed, our participants mentioned pain much less frequently than they mentioned the loss of meaningful activities and physical functioning.4,25
Similarly, burden on family was influential in only 3 cases, although this may reflect that family members were the reporters for two thirds of our cases.2,15,21
Depression and hopelessness have been suggested as causal factors in the pursuit of a hastened death7–13
because they often precede suicide attempts among patients who are not terminally ill,26
and studies of depressed patients with HIV and cancer have documented interest in PAS.9,11,27–30
Depression and hopelessness were not significant issues for our sample, although fears about future quality of life and dying may reflect hopelessness when it is understood to mean negative expectancies about the future and one's ability to change it. In the 3 patients with possible depression, their interest in a hastened death preceded any alteration in mood, and thus, in our judgment, their possible depression did not impinge on decisional capacity.
Importantly, other forms of psychological suffering motivated the patients in this study toward a hastened death. They experienced severe losses (e.g., bodily integrity, functioning, control) as existential suffering that undermined their personal sense of who they were.31
This loss of sense of self (often described in terms of a loss of vitality, essence, personal definition) highlights the threats of dying to the social construction of life's meaning.32
This may be especially salient among individuals living in a secular culture.
Two minor differences between the ongoing and historical cases are noteworthy. Patients seeking a hastened death more frequently expressed their fears and expressed their ongoing deliberations about decisions. Family members presented more of a complete story about the patients' illness. These differences are not surprising based on the different vantage points of the participants. Overall, however, similar issues were reported, lending support to the validity of the motivating issues we identified.
The results should be viewed in the context of the study's limitations. Our participants were a highly self-selected group: they were recruited from advocacy organizations that counsel patients interested in PAS and agreed to participate. Thus, these patients may not be representative of others who pursue a hastened death. In addition, depression may be underrepresented because 1) depressed patients may volunteer less for research, 2) our indirect, informal assessment may have been insufficient, and 3) depression may have served as an exclusion by the advocacy organizations for providing support.
Several important implications for clinicians emerge from these cases. First, the dynamic and interactive nature of the motivations challenges health care providers to understand the holistic illness and dying experience of patients. These data confirm the recommendation, espoused in high-quality palliative care, that providers repeatedly assess the patient's concerns about losses and dying in order to understand and tailor end-of-life care to the patient's changing personal experience.4
Second, the motivating issues can serve as an outline of topics for talking to patients about the far-reaching effects of illness, including the quality of the dying experience. Clinicians should explore a patient's fears, and how the patient sees herself in light of current and future physical decline and functional losses.33
A patient's request for assistance with a hastened death should generate a thorough evaluation of the patient's motives and attempts at ameliorating the patient's suffering.