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. (shrink)

This paper discusses the Saudi Arabian case by Abdallah Adlan and Henk ten Have, published in a 2012 issue of the Journal of Bioethical Inquiry, regarding a congenitally disabled child enrolled in a research project examining the genetics of her condition. During the course of the study, her father was found not to be genetically related, and the case discussed the dilemma between disclosing to the family all findings as promised in consent documents or withholding paternity information because of the (...) likely severe social repercussions. Using Adlan and ten Have’s example, this paper proposes a framework to consider cases outside of the conventional bioethics frame of reference, splitting the bioethical task into three elements: understanding the problem from the patient’s and the clinician’s perspective and then engaging in dialogue to decide what to do next. The process of dialogue between affected parties is vital. Presuming that there is a common morality undermines the effectiveness of the dialogue needed to find a resolution. (shrink)