What is a ‘Good’ Death? The Views of the Public, Patients and Health Professionals in New Zealand

Abstract

Given that we are now living longer with chronic illnesses and experiencing a greater period of functional decline before death, a growing proportion of people are requiring palliative care and as a result, the quality of care at the end of life is becoming increasingly important. However, without a complete and empirically supported understanding of what constitutes a good death, we are not able to initiate relevant conversations regarding interventions or treatments at the end of life. This limits our ability to guide service development and provide medical treatment and care that could increase our likelihood of experiencing a positive death. Currently there is no optimal quantitative measure to assess the views of a good death and the effectiveness of palliative care interventions. This study aimed to explore what perspectives contribute to a good death as perceived by the patients, healthcare professionals and members of the public in New Zealand by creating a novel self-report questionnaire. This exploratory cross-sectional study involved inviting people to complete an online anonymous questionnaire and 782 correctly completed questionnaires were returned and used for analysis. The questionnaire assessed 8 themes of a good death (pain and symptom management, preparation for death, communication/decision making, controllability, care of the whole person, contribution, completion, location/environment) and chi-square analyses revealed that there were significant differences between groups in each of the themes, except ‘preparation for death’ and ‘completion’. The ranking section of the questionnaire revealed that patients and members of the public ranked ‘not feeling physical pain’ as the most important contributor to a good death whilst healthcare professionals emphasised ‘having one’s symptoms controlled during the dying process’. Significant associations were also evident between demographic factors and aspects of controllability; age, religion, religious strength and prior care of dying. Thematic analysis of the respondent’s open-ended comments revealed eight major themes, seven of which were covered in the questionnaire. The novel theme that emerged was ‘social support’. The most commonly mentioned sub-themes related to having choice at the end of life and the need for regulation of euthanasia and physician assisted suicide in New Zealand. It is evident that whilst there is considerable overlap between healthcare providers, patients and members of the public in New Zealand in their perceptions of a good death, there are also important differences. However, future research needs to psychometrically evaluate the questionnaire to examine its reliability and validity. Increased awareness of these differences and evaluation of the individual’s preferences could allow everyone to experience a good death and provide insight into future service development and improved care at end of life.