Definition of (in)appropriate care seen from the patient’s perspective.
(2018) 10th World Research Congress of the European Association of Palliative Care — Location: Bern, Switzerland (24.May.2018)
Files
No attached file found for this publication.
Details
- Authors
Friedel, Marie 
- Abstract
- In 2016 the Belgian Health Care Knowledge Centre (KCE) commissioned a study on opinions about (in)appropriate care at the end of life in the Belgian community aiming to explore views and experiences on this topic and to initiate a societal debate providing guidance to policy makers. This mixed method study included an online survey completed by 1935 respondents, and a qualitative follow-up study consisting of online focus groups, conventional focus groups and in-depth interviews with different stakeholders (n=143). In-depth interviews were conducted with patients characterized by a short life expectancy (n= 8), mostly living at home. The interview guide was based on major topics emerged from the preceding community based online survey. Themes were (not ranked according importance): the support for informal caregivers, dignity at the end of life, decision making and advanced care planning, transition to end-of-life care, unconventional well-being practices, spiritual needs and place of care/death. Thematic analysis was performed. Main findings revealed patient’s definition on concepts such as dignity, quality of life or advanced care planning. Better pain and other symptom control, more comfort care and psychological supportive care both for them and their family caregiver are requested by patients. Furthermore, the need to be respected in their personal choices about place of care and treatment options was widely expressed. Finally, patients communicated openly fears, hopes and desires in relation to their illness, the social interactions experienced and the perspective of death.
- Affiliations
Citations
Friedel, M., Schmitz, O., Van den Broek, K., Wens, J., & Aujoulat, I. (2018). Definition of (in)appropriate care seen from the patient’s perspective. 10th World Research Congress of the European Association of Palliative Care, Bern, Switzerland. https://hdl.handle.net/2078.5/97452