The views of adults with neurodegenerative diseases on end-of-life care: a metasynthesis.

OBJECTIVE: Improving end-of-life care for people with neurodegenerative diseases is seen as a clinical priority. In order to do this, it is important to take into account the views expressed by people with these conditions on their experiences of this care. The purpose of this review was to provide a thematic synthesis of the views of adults with neurodegenerative diseases on end-of-life care. METHODS: After a systematic search, 13 articles were included and thematic synthesis was used to collate and interpret findings. RESULTS: Four analytical themes were identified; (1) Importance of autonomy and control; (2) Informed decision-making and the role of healthcare professionals; (3) Contextual factors in decision-making; (4) The pitfalls of care. CONCLUSION: Participants' views were framed by the context of their lives and experience of their illness and these shaped their engagement with end-of-life care. Given the varying disease trajectories, care needs to be individualised and needs-based, implementing palliative care in a timely way to prevent crises and loss of autonomy.

The views of adults with Huntington's disease on assisted dying: A qualitative exploration.

BACKGROUND: Assisted dying is frequently debated publicly and research often includes the views of health professionals on this issue. However, the views of people with life-limiting conditions, for whom this issue is likely to have a different resonance, are less well represented. AIM: The purpose of this study was to explore the views of people who live with the inevitability of developing Huntington's disease, a genetically transmitted disease which significantly limits life, on assisted dying. DESIGN: Using thematic analysis methodology, individual semi-structured interviews were conducted. SETTING/PARTICIPANTS: Seven participants (five women and two men) who were gene positive for Huntington's disease took part in the study. RESULTS: Four themes were extracted: (1) autonomy and kindness in assisted dying: the importance of moral principles; (2) Huntington's disease threatens life and emphasises issues relating to death; (3) dilemmas in decision-making on assisted dying: "There are no winners" and (4) the absence of explicit discussion on dying and Huntington's disease: "Elephants in the room". CONCLUSIONS: Our findings suggest that talking to patients about assisted death may not cause harm and may even be invited by many patients with Huntington's disease. The perspectives of those who live with Huntington's disease, especially given its extended effects within families, add significant clinical and theoretical insights.

Coping with chronic complex regional pain syndrome: advice from patients for patients.

OBJECTIVE: To explore what advice people currently living with chronic complex regional pain syndrome would offer to another person coming to terms with a diagnosis of chronic complex regional pain syndrome. METHODS: Semi-structured interviews with 21 adults (5 male) living with chronic complex regional pain syndrome who had completed a complex regional pain syndrome rehabilitation programme were conducted. RESULTS: Effectively self-managing complex regional pain syndrome required individuals to play an active role. This could only be achieved if they felt they had sufficient control. Means of attaining control involved attaining a level of acceptance, becoming well-informed and accessing the right kind of support. The advice offered by patients for patients largely reflected that offered by healthcare professionals. One area where there was a conflict concerned sleep hygiene. CONCLUSIONS: Our study provides support both for the argument put forward by Redman that without appropriate preparation and support, self-management is ineffective, and that by Skuladottir and Hallsdottir that the main challenge of the chronic pain trajectory is that of retaining a sense of control. The clinical implications of this are discussed.