Support given by health professionals before and after a patient’s death to relatives involved in general palliative care at home in Sweden: Findings from the Swedish Register of Palliative Care

Abstract

Objectives General palliative care (PC) is provided more at home, leading to increased involvement of relatives. Although support for relatives is a fundamental component of PC, there are deficiencies in the support provided to relatives when general PC is provided at home. This study aimed to describe the support provided by health professionals before and after a patient’s death to relatives involved in general PC at home. Methods A cross-sectional register study was implemented, with data from the Swedish Register of Palliative care. The sample consisted of 160 completed surveys from relatives who had been involved in general PC at home, with 160 related surveys answered by health professionals. Only the questions about support to relatives were used from the surveys. Results The findings showed that although many relatives appear to receive support in general PC at home, not all relatives receive optimal support before or after a patient’s death. The findings also indicated differences in whether relatives received some support before and after a patient’s death depending on the type of relative. There were also differences in responses between health professionals and relatives regarding if relatives received counseling from a doctor about whether the patient was dying. Significance of results There is potential for improvements regarding support for relatives, especially after a patient’s death, which has been confirmed in previous studies. The differences in whether relatives received support before and after a patient’s death depending on the type of relative highlight the need for future research on how to support different types of relatives before and after a patient’s death when general PC is provided at home.

Relative's suggestions for improvements in support from health professionals before and after a patient's death in general palliative care at home: A qualitative register study

“…They also wanted more support in dealing with grief after the patient's death. Previous research has shown that support to relatives after a patient's death is not optimal [16,21]. A previous study regarding the support for relatives in general PC at home showed that 81.2% were satisfied with the support they receive after a patient's death but that one-fifth were not [21].…”

“…Previous research has shown that support to relatives after a patient's death is not optimal [16,21]. A previous study regarding the support for relatives in general PC at home showed that 81.2% were satisfied with the support they receive after a patient's death but that one-fifth were not [21]. O'Sullivan et al [16] found that 21% of relatives in different care settings have no follow-up conversation after a patient's death, even though they would have liked it.…”

“…Wang et al [20] highlighted that relatives in different healthcare settings demonstrate different levels of unmet needs, but the highest level is reported in the home setting. Support for relatives is not optimal, neither before nor after a patient's death [15,16,21], and there are deficiencies in the support provided to relatives when PC is provided at home [14,22]. Further research on relative's unmet support needs in the home PC setting is needed [3], and in general PC at home in Sweden, support for relatives before and after a patient's death needs to be improved [23].…”