Regan, Laurence and Simpson, Jane and Preston, Nancy (2016) The views of adults with Huntington’s disease on assisted dying : a psychological exploration. PhD thesis, Lancaster University.
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Abstract
Neurodegenerative diseases are not typically associated with a palliative care approach, despite poor quality of end-of-life care for people with these conditions. The first aim of this thesis was to understand the views of adults with neurodegenerative diseases on end-of-life care. Consequently, a metasynthesis was conducted. This review revealed that the care needs of people with neurodegenerative diseases are routinely not being met. It suggests that autonomy and a sense of control are important as well as contextualisation in decision-making. Furthermore, palliative care would be beneficial in meeting the needs of adults with neurodegenerative diseases. Theoretical, clinical and research implications are discussed. The second aim of this thesis was to explore how people with Huntington’s disease (HD, a major neurodegenerative disease) view assisted dying, a frequently debated issue. A thematic analysis was conducted using semi-structured interviews. Participants views were captured in four themes: 1) Autonomy and kindness in assisted dying; 2) HD threatens identity but is part of life; 3) Dilemmas in decision-making on assisted dying: “There are no winners”; and 4) Absence of explicit discussion on dying and HD: “Elephants in the room”. The study found that HD influenced views on assisted dying and that participants valued maintaining control of both their life and their death. They faced dilemmas in decision making and limited discussion on EOL issues. The final section of the thesis offers a reflective account of the research process.