Patient's Perspectives on the Notion of a Good Death: A Systematic Review of the Literature

Abstract

Context: There is no clear definition of what constitutes a good death or its features. Patients, caregivers, physicians, and relatives have different notions of a good death. Discussions have been driven by academic perspectives, with little research available on the patients' perspectives.

Objectives: To explore the notions of a good death from the patients' perspective.

Methods: A systematic literature search was conducted up to November 2017 using CINAHL®, MEDLINE®, EMBASE®, and PsycINFO® databases. Search terms used were "quality of death," "good death," "quality of dying," or "good dying." Scientific empirical studies that included the exploration of the notion of a good death in adult patients with advanced and life-threatening diseases were selected separately by two researchers. Hawker's et al. criteria were used to assess the quality of articles. The analysis was conducted using a thematic analysis.

Results: Two thousand six hundred and fifty two titles were identified; after elimination of duplicates, screening, and final selection, 29 relevant publications remained for analysis. Sample populations included patients with terminal diseases (AIDS, cardiovascular disease, and cancer). Core elements for a "good death" included control of pain and symptoms, clear decision-making, feeling of closure, being seen and perceived as a person, preparation for death, and being still able to give something to others; whereas other factors such as culture, financial issues, religion, disease, age, and life circumstances were found to shape the concept across groups. Studies agree on the individuality of death and dying while revealing a diverse set of preferences, regarding not only particular attributes but also specific ways in which they contribute to a good death.

Conclusions: Although sharing common core elements, patients' notions of good death are individual, unique, and different. They are dynamic in nature, fluctuating within particular groups and during the actual process of dying. Formal and informal caregivers should carefully follow-up and respect the patient's individual concepts and preferences regarding death and dying, while attending to shared core elements, to better adjust clinical decisions.

Keywords: Death; attitude to death; patients; terminal care; terminally ill.