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Lived-through past, experienced present, anticipated future: Understanding “existential loss” in the context of life-limiting illness

Published online by Cambridge University Press:  11 June 2015

Denise A. Harris
Denise A. Harris*
Affiliation:
School of Health Sciences, University of Salford, Salford, England
*
Address correspondence and reprint requests to: Denise A. Harris, Room C411, School of Health Sciences, University of Salford, Salford, M5 4WT, England. E-mail: d.harris@salford.ac.uk.
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Abstract

Objective:

Motor Neurone Disease (MND) is a rare, devastating neurodegenerative disease of middle/later life, usually presenting in the sixth and seventh decades (McDermot & Shaw, 2008). People have to wait many months to receive a diagnosis of MND (Donaghy et al., 2008), and during this period they have already experienced the degenerative nature that characterizes MND (Bolmsjö, 2001). However, information on the meaning of life with MND through time is limited. The aim of the present research was to answer the research question “What does it mean to be a person living through the illness trajectory of MND?” and to research the phenomenon of existence when given a diagnosis of MND and in the context of receiving healthcare.

Method:

Hermeneutic phenomenology, inspired by the philosophers Heidegger and Gadamer, informed the methodological approach employed, which asked people to tell their story from when they first thought something untoward was happening to them. The hermeneutic analysis involved a five-stage process in order to understand (interpret) the lifeworld1 of four people diagnosed with MND, and a lifeworld perspective helped to make sense of the meaning of existence when given a terminal diagnosis of MND.

Results:

The concept of “existential loss” identified in relation to MND was the loss of past ways of being-in-the-world, and the loss of embodiment, spatiality, and the future.

Significance of results:

The concept of existential loss requires closer attention by healthcare professionals from the time of diagnosis and on through the illness trajectory. The study findings are conceptualized into a framework, which when used as a clinical tool may prompt healthcare professionals to focus on their patients' existential loss and existential concerns. This research adds to the existing literature calling for a lifeworld approach to healthcare.

Keywords

Existential lossMartin HeideggerHans-Georg GadamerExistential-hermeneutic phenomenology
Type
Original Articles
Information
Palliative & Supportive Care , Volume 13 , Issue 6 , December 2015 , pp. 1579 - 1594
Copyright
Copyright © Cambridge University Press 2015 

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References

REFERENCES

Addington-Hall, J. (2002). Research sensitivities in palliative care patients. European Journal of Cancer Care, 11, 220–224.Google Scholar
Alonso, A.L., Logroscino, G., Jick, S.S. & Hernan, M.A. (2009). Incidence and lifetime risk of motor neuron disease in the United Kingdom: A population-based study. European Journal of Neurology, 16(6), 745–751.CrossRefGoogle ScholarPubMed
American Psychological Association (2014). Depression. Available from http://www.apa.org/topics/depress/index.aspx.Google Scholar
Ashworth, P. (2006). Seeing oneself as a carer in the activity of caring: Attending to the lifeworld of a person with Alzheimer's disease. International Journal of Qualitative Studies on Health and Well-Being, 1, 212–225.Google Scholar
Atkinson, R. (1998). The life story interview. Qualitative Research Methods, Series 44. Thousand Oaks: SAGE Publications.Google Scholar
Beauchamp, T.L. & Childress, J.F. (2001). Principles of biomedical ethics, 5th ed. New York: Oxford University Press.Google Scholar
Benzein, E.N., Norberg, A. & Saveman, B.I. (2001). The meaning of the lived experience of hope in patients with cancer in palliative home care. Palliative Medicine, 15(2), 117–126.Google Scholar
Berrios, G.E. (1988). Melancholia and depression during the 19th century: A conceptual history. The British Journal of Psychiatry, 153, 298–304.Google Scholar
Bolmsjö, I. (2001). Existential issues in palliative care: Interviews of patients with amyotrophic lateral sclerosis. Journal of Palliative Medicine, 4(4), 499–505.Google Scholar
Boss, M. (1994). Existential foundations of medicine and psychology. New Jersey: Jason Aronson.Google Scholar
Brown, J. (2003). User, carer and professional experiences of care in motor neurone disease. Primary Health Care Research and Development, 4, 207–217.CrossRefGoogle Scholar
Brown, J.L. (2006). An investigation of patient and providers views of services for motor neurone disease. British Journal of Neuroscience Nursing, 1(5), 249–252.Google Scholar
Brown, J. & Addington-Hall, J. (2008). How people with motor neurone disease talk about living with their illness: A narrative study. Journal of Advanced Nursing, 62(2), 200–208.CrossRefGoogle ScholarPubMed
Cohn, H. (1997). Existential thought and therapeutic practice. London: Sage.CrossRefGoogle Scholar
College of Occupational Therapists (COT) (2010). Code of ethics and professional conduct. London: College of Occupational Therapists.Google Scholar
Department of Health (DH) (2008). Advance care planning: A guide for health and social care staff. London: Department of Health.Google Scholar
Donaghy, C., Dick, A., Hardiman, O., et al. (2008). Timeliness of diagnosis in motor neurone disease: A population-based study. The Ulster Medical Journal, 77(1), 18–21.Google Scholar
Doughty, S. (2012, May 3). Patient wins the right to die … by blinking his eye. Daily Mail, 8.Google Scholar
Finlay, L. (2003). The intertwining of body, self and world: A phenomenological study of living with recently diagnosed multiple sclerosis. Journal of Phenomenological Psychology, 34(2), 157–178.Google Scholar
Finlay, L. (2011). Phenomenology for therapists: Resesearching the lived world. Chichester: Wiley–Blackwell.Google Scholar
Fleming, V., Gaidys, U. & Robb, Y. (2003). Hermeneutic research in nursing: Developing a Gadamerian-based research method. Nursing Inquiry, 10(2), 113–120.Google Scholar
Gadamer, H. (1975). Truth and method, 2nd ed. New York: Continuum.Google Scholar
Gadamer, H. (1993). The enigma of health: The art of healing in a scientific age. Stanford: Stanford University Press.Google Scholar
Gullickson, C. (1993). My death nearing its future: A Heideggerian hermeneutical analysis of the lived experience of persons with chronic illness. Journal of Advanced Nursing, 18, 1386–1392.CrossRefGoogle ScholarPubMed
Heidegger, M. (1927/1962). Being and time. Oxford: Blackwell.Google Scholar
Henry, C. (2014). End-of-life care services choice and quality review launched. Occupational Therapy News, 22(8), 8.Google Scholar
Hogg, K.E., Goldstein, L.H. & Leigh, P.N. (1994). The psychological impact of motor neurone disease. Psychological Medicine, 25, 625–632.Google Scholar
Hollway, W. & Jefferson, T. (2000). Doing qualitative research differently: Free association, narrative and interview method. London: Sage.Google Scholar
Hughes, R.S., Sinha, A., Higginson, I., et al. (2005). Living with motor neurone disease: Lives, experiences of services and suggestions for change. Health & Social Care in the Community, 13(1), 64–74.CrossRefGoogle ScholarPubMed
Inwood, M. (1997). Heidegger: A very short introduction. Oxford: Oxford University Press.Google Scholar
Koch, T. (1995). Interpretive approaches in nursing research: The influence of Husserl and Heidegger. Journal of Advanced Nursing, 21, 827–836.Google Scholar
Leigh, P.A., Abrahams, S., Al-Chalabi, A., et al. (2003). The management of motor neurone disease. Journal of Neurol and Neurosurg Psychiatry, 74(Suppl IV), 32–47.Google Scholar
Locock, L., Ziebland, S. & Dumelow, C. (2009). Biographical disruption, abruption and repari in the context of motor neurone disease. Sociology of Health & Illness, 31(7), 1043–1058.Google Scholar
McDermot, C.J. & Shaw, P.J. (2008). Diagnosis and management of motor neurone disease. BMJ, 336, 658–662.Google Scholar
McLeod, J.E. & Clarke, D.M. (2007). A review of psychosocial aspects of motor neurone disease. Journal of Neurologial Sciences, 258, 4–10.Google Scholar
McPherson, C., Wilson, K. & Murray, M. (2007b). Feeling like a burden: Exploring the perspectives of patients at the end of life. Social Science & Medicine, 64, 417–427.Google Scholar
Motor Neurone Disease Association (MNDA) (2000). A problem-solving approach. Northamptom: Motor Neurone Disease Association.Google Scholar
Motor Neurone Disease Association (MNDA) (2011). A best practice guide. Northamptom: Motor Neurone Disease Association.Google Scholar
Motor Neurone Disease Association (MNDA) (2013 a). Services required along the Year of Care pathway. Northamptom: Motor Neurone Disease Association.Google Scholar
Motor Neurone Disease Association (MNDA) (2013 b). Types of MND. Northampton: Motor Neurone Disease Association.Google Scholar
Moran, D. (2000). Introduction to phenomenology. London: Routledge, Taylor and Francis Group.Google Scholar
Oliver, D. (2002). Palliative care for motor neurone disease. Practical Neurology, 2, 68–79.CrossRefGoogle Scholar
O'Toole, S. (2011). A narrative analysis of accounts of dying with motor neurone disease: Stories of suffering. Doctoral dissertation. Dublin: University College Dublin.Google Scholar
Patton, M. (1990). Qualitative evaluation and research methods, 2nd ed. Thousand Oaks, CA: Sage.Google Scholar
Polt, R. (1999). Heidegger: An introduction. Ithaca: Cornell University Press.Google Scholar
Preston, H.F., Fineberg, I.C., Callagher, P., et al. (2012). The Preferred Priorities for Care document in motor neurone disease: View of bereaved relatives and carers. Palliative Medicine, 26(2), 132–138.Google Scholar
Robertson-Malt, S. (1999). Listening to them and reading me: A hermeneutic approach to understanding the experience of illness. Journal of Advanced Nursing, 29(2), 290–297.Google Scholar
Schwandt, T. (2000). Three epistemological stances for qualitative inquiry: Interpretivism, hermeneutics and social constructionism. In Handbook of qualitative research. Denzin, N.K. & Lincoln, Y.S. (eds.), pp. 189–214. Thousand Oaks, CA: Sage.Google Scholar
Talbot, K. & Marsden, R. (2008). Motor neuron disease: The facts. Oxford: Oxford University Press.Google Scholar
Thomas, C. (2010). Negotiating the contested terrain of narrative method in illness contexts. Sociology of Health & Illness, 32(4), 647–660.Google Scholar
van Deurzen, E. & Arnold-Bacon, C. (eds.) (2005). Existential perspectives on human issues. Hampshire: Palgrave MacMillan.Google Scholar
Van Teijingen, E., Friend, E. & Kamal, A. (2001). Service use and needs of people with motor neurone disease and their carers in Scotland. Health & Social Care in the Community, 9(6), 397–403.Google Scholar
Wengraf, T. (2001). Qualitative research interviewing. London: Sage.Google Scholar
WHO (2002). Definition of palliative care. Available from www.who.int/cancer/palliative/definition/en/.Google Scholar