Abstract
Background: International guidelines have promoted palliative care (PC) for stroke survivors, but definition and implementation have been less than ideal. This practice gap is more prominent in China, where discussion of death remains taboo.
Aim: The aim of this study was to explore the perspectives of PC among caregivers of hospitalized patients with stroke.
Design and Setting: A descriptive qualitative study design was used. Seventeen in-depth interviews with bedside caregivers in a first-rank tertiary hospital (general hospital with bed capacity exceeding 500) in China were analyzed thematically.
Results: "Promoting comfort" stands at the core of PC and was operationalized by "meeting physical care needs," "ensuring communication," "providing psychoemotional care," "providing cognitive stimulation," and "avoiding discussion on death and dying." Caregivers who took care of older adults for a long time have described the use of "cognitive stimulation" to promote patients' positive emotional and cognitive reactions. All interviewees avoided mentioning "death" to protect patients' feelings, because they believed discussion of death was hurtful.
Conclusions: The high care demand for patients with stroke is a defining feature of stroke PC and should be recognized in addition to its prognosis estimation to promote this concept. The healthcare system should integrate PC as part of the regular service for patients with severe stroke to shift the focus of care from survival to promotion of comfort. A discussion of the dying process requires sensitivity and should be approached in a discussion of advanced PC planning, which views death as a meaningful transition.