Managing death in ALS/MND: identifying caregivers' perspectives of the final days of life

Ray, R., and Brown, J. (2009) Managing death in ALS/MND: identifying caregivers' perspectives of the final days of life. In: Proceedings of 20th International Symposium on ALS/MND (10) p. 35. From: 20th International Symposium on ALS/MND, 8 - 10 December, 2009, Berlin, Germany.

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Background: Family caregivers usually remain central to the provision of care throughout the illness trajectory. Yet, little is known about how they manage or cope with the dying process and the death of their relative with ALS/MND.

Objective: This study sought to understand the experiences and support needs of family caregivers, during their relatives’ final days of life.

Methods: Longitudinal studies of family caregiving in ALS/MND were undertaken in Australia and United Kingdom. Primary caregivers participated in in-depth interviews at four month intervals throughout the illness trajectory, including the bereavement phase. Five cases from each country were purposively sampled for analysis. A process of open and axial coding was used to categorise the data and identify themes as they emerged from each caregiver’s story.

Results: In the broadly similar socio-cultural structure of Australia and the United Kingdom, family caregivers in both countries expressed similar experiences of their relative dying. However, their construction of the dying process varied, exhibiting delicately nuanced differences in their experiences and their responses. In eight out of ten cases, patients were cared for at home until their last days of life. All the United Kingdom cases died in hospital/hospice. Three of the Australian cases died at home and two died in hospital/hospice. Conversations between the caregiver and the dying person, about end of life, were only evident in six out of ten cases. The most prominent themes across all cases were dignity, emotional labour, advanced care planning, spiritual sustenance, reflective guilt, and redefinition. Caregivers were often unprepared for the rapid deterioration and sudden death of their relative, prolonging their sense of loss and disconnection.

Discussion and conclusion: The increasing trend towards dying at home is both challenging and rewarding for family caregivers. The quality of life focus, prominent during the earlier phases of living with ALS/MND, can be easily over looked in the medicalised processes of dying. When caregivers reflected on the dying experience and said “we got it right”, they lived with the positive affirmations of caregiving. However, if the dying experience was characterised by conflict about decision making, then negative memories are perpetuated.

This study demonstrated the need for an inclusive process of effective communication between the patient, the family and health and social care professionals, to prepare for dying. There is a need to develop communication skills to facilitate conversations that will support patient and family caregiver decision making and enhance their coping skills. While it is recognised that patients and caregivers have to be emotionally ready to have these conversations, the often unpredictable, degenerative nature of ALS/MND increases the need to facilitate preparation for dying in a timely manner.

Item ID: 9821
Item Type: Conference Item (Abstract / Summary)
Keywords: caregivers; dying; advanced planning
Additional Information:

Abstracts also published in Amyotrophic Lateral Sclerosis, Vol 10 Supp 1 2009

Date Deposited: 05 May 2010 23:31
FoR Codes: 11 MEDICAL AND HEALTH SCIENCES > 1199 Other Medical and Health Sciences > 119999 Medical and Health Sciences not elsewhere classified @ 100%
SEO Codes: 92 HEALTH > 9202 Health and Support Services > 920211 Palliative Care @ 100%
Downloads: Total: 11
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