How palliative care patients' feelings of being a burden to others can motivate a wish to die. Moral challenges in clinics and families. (21st May 2019)

• Record Type: Journal Article
• Authors: Gudat, Heike; Ohnsorge, Kathrin; Streeck, Nina; Rehmann‐Sutter, Christoph
• Other Names: Rehmann‐Sutter Christoph guestEditor.; Ohnsorge Kathrin guestEditor.; Onwuteaka‐Philipsen Bregje guestEditor.; Widdershoven Guy guestEditor.
• Is Part Of: Bioethics. Volume 33:Number 4(2019)
• Page Start: 421
• Page End: 430
• Publication Date: 2019-05-21
• Subjects: burden to others -- end of life -- ethics of care palliative care -- qualitative studies -- wish to die -- wish to hasten death; Bioethics -- Periodicals; 174.957
• DOI: 10.1111/bioe.12590
• Languages: English
• ISSNs: 0269-9702

Abstract

Abstract: The article explores the underlying reasons for patients' self‐perception of being a burden (SPB) in family settings, including its impact on relationships when wishes to die (WTD) are expressed. In a prospective, interview‐based study of WTD in patients with advanced cancer and non‐cancer disease (organ failure, degenerative neurological disease, and frailty) SPB was an important emerging theme. In a sub‐analysis we examined (a) the facets of SPB, (b) correlations between SPB and WTD, and (c) SPB as a relational phenomenon. We analyzed 248 interviews with 62 patients, their family caregivers, and professionals using grounded theory and interpretive phenomenological analysis. SPB appeared as important empathic concern in care situations. Patients expressed many sorts of concerns for others, but also perceived an altered self‐understanding that did not meet mutual expectations within relationships. In SPB associated with WTD three constellations were found: (a) WTD to unburden others; (b) patients decided against hastening death to prevent being a further burden to others (in these cases, the SPB counteracted the wish to die); and (c) both wishes for and against dying were sustained by SPB. These patients often felt paralyzed and suffered deeply. Family caregivers felt emotionally touched by SPB and tried to unburden patients by caring and compassion. We concluded that the impact of SPB on a WTD and the various meanings the facets of SPB have in balancing relationships need to be worked out individually. An early palliative and narrative approach is warranted.