Patient Perspectives of Dignity, Autonomy and Control at the End of Life: Systematic Review and Meta-Ethnography

Abstract

BackgroundResearch in the end-of-life context has explored the sense of dignity experienced by patients with advanced disease, examining the factors associated with it. Whereas certain perspectives regard dignity as an intrinsic quality, independent of external factors, in the clinical setting it is generally equated with the person’s sense of autonomy and control, and it appears to be related to patients’ quality of life. This study aims to explore the relationship between perceived dignity, autonomy and sense of control in patients at the end of life.MethodsWe conducted a systematic review and meta-ethnography using reciprocal translation and line-of-argument synthesis. The search strategy used MeSH terms in combination with free-text searching of the Pubmed, Web of Science, CINAHL, PsycINFO and Cochrane databases, from their inception until 2015. This identified 186 articles, after excluding duplicates. The inclusion criterion was primary qualitative studies in which dignity, autonomy and control at the end of life were explored. Studies were evaluated using the CASP guidelines.ResultsTwenty-one studies recording the experiences of 400 participants were identified. Three themes emerged: a) dignity mediated by the loss of functionality, linked to the loss of control; b) dignity as identity; and c) autonomy as a determining factor of perceived dignity, understood as the desire for control over the dying process and the desire for self-determination. We propose an explanatory model which highlights that those patients with an intrinsic sense of dignity maintained a positive view of themselves in the face of their illness.ConclusionThis synthesis illustrates how dignity and autonomy are intertwined and can be perceived as a multidimensional concept, one that is close to the notion of personal identity. The ability to regard dignity as an intrinsic quality has a positive impact on patients, and the design of care strategies should take this into account.

Organ Donation After Euthanasia: A Pure Act of Altruism Fulfilling the Patient’s Last Wish

“…Patients who want to donate organs after euthanasia are not those who feel that their dignity is undermined by dying but rather those who remain positive. The fact that they have the possibility to donate organs has a positive influence on their suffering and has been shown to reduce ongoing chronic pain, potential low mood, and diminished quality of life 4. These patients embrace the fact that they are able to control their dying process, which does not imply that they are willing to hasten their death.…”

Living with multiple losses: Insights from patients living with pressure injury

“…Participants spoke primarily about notions of personal and relational dignity associated with the loss of privacy, independence and increasing fragility, which gave rise to feelings of reduced personal identity and sense of self-esteem. This form of dignity of self, refers to the dignity individuals attach to themselves as persons with a history and a future (33), along with perceptions about their personal worth and value that is reflected back through their social interactions (34). This type of loss of dignity has been recognised as a major concern in the lives of older people (35), with difficulty maintaining physical appearance and personal hygiene a threat to dignity (36).…”

Perception of Dignity of Patients in Palliative Care

“…This concept was also observed in the canadian study 6 and in a systematic review work in which the author analyzed the publications on dignity at the end of life. 24 To cover biological, psychological, social and spiritual aspects, PC care is necessarily provided by a multidisciplinary team so that all dimensions of care are involved. [25][26][27] Factors such as communication…”

“…30 Communication is a fundamental aspect that has a direct effect on patient care and may affect end-of-life care. 24,31 In addition, facts such as the workload of the nursing staff, gaps in difficult news reporting, as well as lack of material resources and inadequate physical structure also impact negatively on patient assistance in palliative care. 23 Lack of continuing education in communication strategies for patients in palliative care 30 and non-professional involvement with death-related issues interfere with the patients' sense of dignity, as dignity "can come and go" according to the actions of other subjects.…”