Objective: This study, conducted by the Partnership to Improve End-of Life Care in Utah and funded by the Robert Wood Johnson Foundation, assessed the current experiences with end-of-life care in Utah in order to identify areas for improvement. This paper compares the experience in individuals who died from cancer to those who died from other causes. Design: A cross-sectional telephone survey of individuals who were agreeable to sharing their experience in the death of a significant other was conducted in two waves over 3 months in late 2000. Population, Sample, Setting, and Years: A potential sample of 540 was randomly selected from all deaths that had occurred 6 months previously (n=2840 over a 3 month time period) using death certificate data in Utah. Of these, telephone contact information for a survivor was located on 69.9%. In the first wave of interviews, 100 deaths due to any cause were included (31 of these were cancer deaths); the second wave included 50 cancer deaths. The decedent sample was compared to the total death certificate sampling frame in terms of age and place of death. There were no significant differences. Concept or variables studied together: Demographic characteristics; place of death as compared to desired place of death; use of hospice services; symptom experience; advanced directives; and satisfaction with end-of-life care. Methods: A total of 228 survivors were approached to participate in the study, first by letter and then by phone. 150 consented for a 65.8% response rate. Data were collected via telephone using a structured interview guide that included both closed and open-ended questions. Both waves were combined and data were analyzed with SPSS 10.0 comparing the cancer deaths (n-81) and deaths from other causes (n-69). Findings: The age of decedents ranged from 23 to 100 with a mean of 73.8 (SD 14.08); nearly 75% percent were 65 or older. They were 98.7% Caucasian and 56.7% male. The place of death differed significantly (p < .001) between the two groups: 64.2% of cancer deaths were at home as compared to 26.1% of deaths due to other causes. 72.8% 0f the individuals with cancer died where they wanted as compared to 31.3% of individuals who died from other cause (p<.001). 65.8% of cancer patients used hospice services as compared to 21.1% of the other cause group (p < .001). Of those who used hospice services, 66.7% used hospice for less than 1 month with 27.7% using hospice for less than 1 week. Use of hospice was associated with the provision of better information about what to expect near and after the time of death. Symptoms were common at the end of life with confusion, pain, and shortness of breath affecting over 60% of decedents. There were no significant differences in the prevalence of shortness of breath, depression, and confusion between the two groups. The cancer group had significantly higher rates of anxiety, nausea, and pain. Pain severity without treatment was greater in the cancer group with nearly 60% experiencing pain that was “extremely severe’ without treatment as compared to 41% in the other cause group. Almost half (47.5%) of the cancer patients were in pain all of the time. 59.6% of all patients had a durable power of attorney and 68.8% had a living will. More cancer patients (74.4%) had a living will than those who died from other causes (62.1%) (NS). The level of satisfaction (1-10 scale) with care at the end-of-life was significantly higher in the cancer (Mean=8.78) vs. non-cancer (Mean=8.31) groups. This was also true in regards to satisfaction with emotional support provided to the family (8.1 vs. 7.6; p=.04). Overall, only 64.1% of respondents were aware of grief support programs. Conclusions: The end-of-life experience, as reported by survivors, is significantly different for individuals who die from cancer as compared to those who die from other causes. Cancer patients die more often at home, in their preferred place, and with hospice care. They also have a higher symptom burden. Implications: Programs providing end-of-life care should not only continue to improve care to individuals with cancer, especially in regards to pain and symptom management, but should implement strategies to target individuals who are dying from other causes. There is a need to increase the use of hospice services in other than cancer patients and to promote earlier referrals to hospice for all dying persons. Strategies to market grief support programs should be implemented into palliative care services.
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