Issues of "life" and "death" for patients receiving palliative care-comments when confronted with a research tool

Abstract

Purpose To be able to study the desire for hastened death (DhD) in patients receiving palliative care, research tools reflecting the thoughts of patients are needed. In order to better understand what issues of "life" and "death" mean to patients receiving palliative care in Germany, we analysed their spontaneous comments during a validation study of the German version of the Schedule of Attitudes Towards Hastened Death. Method Field notes and transcripts of 39 interviews were analysed by thematic analysis. Method Field notes from 32 patients were related to differentiating either an acute or a non-acute DhD. Furthermore, the patients' comments were categorized and the distribution of codes analysed, leading to three types of comments: (a) longing for life excluding a hastened death, (b) wanting to live on, but perceiving death as an option, and (c) longing for death, but struggling for life. Conclusion The existing construct of an increased DhD may benefit from a further differentiation between "non-acute" and "acute." In addition, it could be helpful to conceptualize "will to live" and "desire for death" not as polarities from one dimension (two sides of the same coin), but to think them as two independent dimensions.