What do Future Hospice Patients Expect of Hospice Care: Expectations of Patients in the Palliative Phase Who Might be in Need of Hospice Care in the Future: A Qualitative Exploration.
Merel van Klinken, Everlien de Graaf, Rick Bressers and 3 others
PMID 31818118WHAT IT FOUND
People who might need hospice expected to die at home and go to hospice only when home became unbearable.
They wanted a homely, private place, their GP still involved, professionals for medical care, and volunteers for listening.
Key findings
01Participants saw hospice as a final destination and expected admission only when dying at home became unbearable.
02They expected a homely, private setting where family could visit at any time and daily life could continue.
03They expected their GP to remain involved and professionals to provide medical care.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
Only 13 participants were enrolled, and inclusion was difficult because patients were vulnerable, so this was a convenience sample rather than the intended purposeful sample. The paper says 2 patient representatives were recruited and 13 participants enrolled, but it is not clear whether those representatives were part of the 13. The participants were home-dwelling Dutch patients with life expectancy under 1 year, and the authors say themes may not transfer to other countries. Participants had little or no experience of hospice care, so the findings are expectations and ideals, not reports of actual care received. The study did not include people already admitted to hospice, so it cannot show whether these expectations were met.
Declared interests
The authors declared no potential conflicts of interest. The research was funded by ZonMw, project number 844001406.
The easy way to misread this
Do not read this as evidence that hospice should only be used in the dying phase. The participants had not experienced hospice care, and the study reports ideals and expectations, not tested outcomes.