What is a good death? Terminally ill patients dealing with normative expectations around death and dying

• Published in: Patient education and counseling 2006-12, Vol.64 (1), p.378-386
• Main Authors: Goldsteen, Minke, Houtepen, Rob, Proot, Ireen M., Abu-Saad, Huda Huijer, Spreeuwenberg, Cor, Widdershoven, Guy
• Format: Article
• Language: English
• Subjects: Adaptation, Psychological; Adult; Aged; Aged, 80 and over; Attitude of Health Personnel; Attitude to Death; Attitude to Health; Awareness; Caregivers - psychology; Choice Behavior; Communication; Family - psychology; Female; Good death; Humans; Male; Middle Aged; Needs Assessment; Neoplasms - psychology; Netherlands; Normative expectations; Nursing; Nursing Methodology Research; Palliative care; Patient Advocacy; Qualitative Research; Social Support; Social Values; Surveys and Questionnaires; Terminal Care - organization & administration; Terminal Care - psychology; Terminally Ill - psychology
• ISSN: 0738-3991; 1873-5134
• DOI: 10.1016/j.pec.2006.04.008

Developing good care for dying people is important nowadays. Normative expectations about what could be considered as a good death are inextricably bound up with this issue. This article aims to offer an insight in the way terminally ill patients talk about death and dying and how they refer to current western normative expectations about a ’good’ death. Thirteen patients with a life expectancy of less than 3 months living at home were interviewed about how they experienced the last phase of their lives. The analysis focused on the way patients tell their personal stories by using normative expectations that are part of a broader cultural western framework. Five categories of normative expectations were discriminated in the stories of patients: awareness and acceptance, open communication, living one's life till the end, taking care of one's final responsibilities and dealing adequately with emotions. The results of this study show that in the search of a good death people show a clear diversity in their way of referring to as well as in dealing with normative expectations that are part of the current cultural paradigm. Professional caregivers should be responsive to how a patient deals with and relates to normative expectations about a good death and should support patients in their individual process of dying an ‘appropriate death’.