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Interpreting end-of-life experiences of the person with motor neurone disease

Published online by Cambridge University Press:  25 June 2021

Denise Andrea Harris*
Affiliation:
Faculty of Health, Psychology & Social Care/Nursing, Manchester Metropolitan University, Manchester, UK
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Abstract

Type
Letter to the Editor
Copyright
Copyright © The Author(s), 2021. Published by Cambridge University Press

Dear Sir/Madam,

Motor neurone disease (MND) is a progressive neurodegenerative disease with no known cure. At the time of diagnosis, a person has already experienced the degenerative nature of MND and the subsequent losses and uncertainty of life with the disease (Harris, Reference Harris2015; Harris et al., Reference Harris, Thomas and Thomas2018b).

Loss and uncertainty are recognized as existential concerns for people who are diagnosed with a terminal illness, such as cancer (Henoch and Danielson, Reference Henoch and Danielson2009). Breitbart (Reference Breitbart2017, 509) raises awareness that people facing death need support to explore their existential guilt, as a way to accepting a life that has already been lived in order to face death with “peace and equanimity.” It is important that we address the existential concerns of the terminally ill if we are to prevent people experiencing life in crisis and considering suicide or hastening death (LeMay and Wilson, Reference LeMay and Wilson2008). Saracino et al.'s (Reference Saracino, Rosenfeld and Breitbart2019) review acknowledges several best practices relating to psycho-oncology at end of life. However, in relation to MND care, there are still gaps in thinking that need to be addressed.

MND care should be provided through a multidisciplinary team (MDT) approach that is person-centered, focusing on the physical, emotional, social, and spiritual needs of the person (Foley, Reference Foley2011). Those MDT professionals who are more adept at addressing the existential concerns of people with MND are psychologists or palliative care professionals (Hogden et al., Reference Hogden, Foley and Henderson2017). It is known that psychologists are underutilized in MND care (Harris et al., Reference Harris, Jack and Wibberley2018a) and that people with MND are not usually referred to the palliative care specialist until the last weeks of their life (Flemming et al., Reference Flemming, Turner and Bolsher2020). This is too late for those who are suffering from life in crisis.

The person with MND's experience of their end of life may be vastly different from the way the provider of care experiences it, and the provider of care must be mindful of this. I propose a temporal model of care as a way of thinking about person-centered care through a temporal lens. Central to this model are three aspects of temporality — lived-through past, experienced present, and anticipated future.

The use of this temporal model of care will support professionals to focus their conversation on what is important for the person. This may be their lived-through past, or their experienced present, or their anticipated future. A person who has been diagnosed with MND, or any other terminal illness, will, through this model, be encouraged to direct the focus of conversation. MND care is complex, but the complexity can be reduced if those who provide MND care interpret the person's end-of-life experiences (Harris et al., Reference Harris, Jack and Wibberley2021).

Conflict of interest

The author declares no conflict of interest.

References

REFERENCES

Breitbart, W (2017) Existential guilt and the fear of dying. Palliative and Supportive Care 15, 509512.CrossRefGoogle Scholar
Flemming, K, Turner, V, Bolsher, S, et al. (2020) The experiences of, and need for, palliative care for people with motor neurone disease and their informal caregivers: A qualitative systematic review. Palliative Medicine 34(6), 708730.CrossRefGoogle ScholarPubMed
Foley, G (2011) The complexity of care in amyotrophic lateral sclerosis. Amyotrophic Lateral Sclerosis 12, 160161.CrossRefGoogle ScholarPubMed
Harris, DA (2015) Lived-through past, experienced present, anticipated future: Understanding “existential loss” in the context of life-limiting illness. Palliative and Supportive Care 13(6), 15791594. doi:10.1017/S1478951515000620.CrossRefGoogle ScholarPubMed
Harris, DA, Jack, K and Wibberley, C (2018a) The meaning of living with uncertainty for people with motor neurone disease. Journal of Clinical Nursing 27, 20622071.CrossRefGoogle ScholarPubMed
Harris, M, Thomas, G, Thomas, M, et al. (2018b) Supporting wellbeing in motor neurone disease for patients, carers, social networks, and health professionals: A scoping review and synthesis. Palliative and Supportive Care 16(2), 228237.CrossRefGoogle ScholarPubMed
Harris, DA, Jack, K and Wibberley, C (2021) The need to consider “temporality” in person-centred care of people with motor neurone disease. The European Journal of Person-Centered Care. in press.Google Scholar
Henoch, I and Danielson, E (2009) Existential concerns among patients with cancer and interventions to meet them: An integrative literature review. Psycho-Oncology 18(3), 225236.CrossRefGoogle ScholarPubMed
Hogden, A, Foley, G, Henderson, RD, et al. (2017) Amyotrophic lateral sclerosis: Improving care with a multidisciplinary approach. Journal of Multidisciplinary Healthcare 10, 205215.CrossRefGoogle ScholarPubMed
LeMay, K and Wilson, KG (2008) Treatment of existential distress in life-threatening illness: A review of manualized interventions. Clinical Psychology Review 28, 472493.CrossRefGoogle ScholarPubMed
Saracino, RM, Rosenfeld, B, Breitbart, W, et al. (2019) Psychotherapy at the end of life. American Journal of Bioethics 19(12), 1928.CrossRefGoogle ScholarPubMed