“Don't use the word hospice in front of my mother; I don't want her to think she's dying.”
—Erica, the daughter of a hospice patient
Dear Editor:
For many patients and their families, the decision to enter hospice care may be difficult, perhaps in part due to a fear that being on hospice will anxiously increase thoughts of death and dying. A 2010 study by Galfin, Watkins, and Harlow1 found palliative care patients did report more existential concerns than a control group of people who were not ill, and that these concerns were correleted with anxiety and depression. However this study was not completed on hospice patients, and did not ask patients about the frequency of their thoughts.
In turn, we conducted a study of 21 hospice patients whose levels of depression and anxiety were assessed using the Hospital Anxiety and Depression Scale (HADS). We also asked each patient to rate the frequency with which they thought about their death using a 10-point Likert scale ranging from “Never” to “More than once daily.” Patients were asked to report the frequency of their thoughts about death both before and after entering hospice care. The aim was to measure the frequency with which hospice patients contemplated their own death before and after entering hospice care, and to measure whether the currently reported frequency was related to patients' present levels of anxiety and depression.
The results of this study did not show a significant relationship between the reported frequency of thoughts about death and patients' current levels of anxiety and depression (r19=0.268, p=0.240). However, the data indicated a significant increase in the reported thoughts about death from occurring “at least once a year” before entering hospice to “at least once a month” after entering hospice (t20=−3.681, p=0.001). The increase in reported thoughts of death after being admitted to hospice care was not surprising. However, the finding that these hospice patients only thought about their death “approximately once a month” was unexpected. In fact, patients could have reported a frequency of thoughts about death as often as “once daily,” or even “more than once daily.”
These findings lead to an intriguing question: Why would hospice patients only be reporting thoughts of death approximately once per month? This rate seems low given the usual array of hospice visits by myriad team members—with many staff visiting patients on a daily or weekly basis to address end-of-life concerns. Do such conversations between hospice staff and patients not increase thoughts of death? Is it possible that hospice care ironically affords patients the luxury of not having to think about their death because pain and all other psychosocial issues are being addressed?2
If so, perhaps the beginning quote from Erica, the daughter of a hospice patient, could instead read:
“I'm relieved to have my mother on hospice care. Now she can enjoy the rest of her life and not have to think so much about her death.”
References
- 1.Galfin JM, Watkins E, Harlow T: Psychological distress and rumination in palliative care patients and their caregivers. J Palliat Med 2010;13:1345–1348 [DOI] [PubMed] [Google Scholar]
- 2.Smith KA, Goy ER, Harvath TA, Ganzini L: Quality of death and dying in patients who request physician-assisted death. J Palliat Med 2011;14:445–450 [DOI] [PubMed] [Google Scholar]