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Living through the end: The phenomenon of dying at home

Published online by Cambridge University Press:  04 November 2013

Diane N. Solomon  and
Lissi Hansen
Diane N. Solomon*
Affiliation:
Oregon Health and Science University School of Nursing, Portland, Oregon
Lissi Hansen
Affiliation:
Oregon Health and Science University School of Nursing, Portland, Oregon
*
Address correspondence and reprint requests to: Diane N. Solomon, Oregon Health and Science University School of Nursing, 3455 SW Veterans Hospital Road, Portland, Oregon 97239, E-mail: [email protected]
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Abstract

Objectives:

To explore the unique lived experiences of one patient who died at home and her family members, and to interpret how dying at home influenced patterns of bereavement for this patient's family.

Methods:

Benner's (1985) interpretive phenomenological approach was employed to get at the embedded nature of the social phenomenon of dying at home, uncovering what may be taken for granted by participants — in this case, during and after the patient's home hospice course. The participants were a 78-year-old female diagnosed with amyotrophic lateral sclerosis six months prior to death, her husband, and three of her four children. In line with the patient's wish to die at home, she voluntarily forewent food and drink when she no longer wished to watch her body deteriorate and felt that her life had run its course. She informed her family of this plan, and all were supportive. For data collection, separate single in-depth interviews were conducted with the deceased three months prior to death, and after death with three of her four children and her spouse of 60 years. For data analysis, the interview transcripts were coded for paradigm cases, exemplars, and themes.

Results:

The paradigm case, “The Meaning of Being at Home,” revealed that for study participants, remaining home with hospice provided a richly familiar, quiet, and safe environment for being together over time and focusing on relationships. Exemplars included “Driving Her Own Course” and “Not Being a Burden.” Salient themes encompassed patient and family characteristics, support, emotions, the value of time, and aspects of the healthcare team.

Significance of results:

End-of-life care providers need to hold a patient-centered, family-focused view to facilitate patient and family wishes to remain home to die. Investigation into family relationships, from the perspectives of both patient and family members, longitudinally, may enrich understanding and ability and help patients to die at home.

Keywords

Family relationshipsHome deathHospicePhenomenology
Type
Original Articles
Information
Palliative & Supportive Care , Volume 13 , Issue 2 , April 2015 , pp. 125 - 134
Copyright
Copyright © Cambridge University Press 2013 

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References

REFERENCES

Badr, H. & Acitelli, L.K. (2005). Dyadic adjustment in chronic illness: Does relationship talk matter? Journal of Family Psychology, 19, 465–469. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/16221026.CrossRefGoogle ScholarPubMed
Beccaro, M., Costantini, M., Giorgi Rossi, P., et al. (2006). Actual and preferred place of death of cancer patients: Results from the Italian survey of the dying of cancer (ISDOC). Journal of Epidemiology and Community Health, 60, 412–416. doi: 10.1136/jech.2005.043646.CrossRefGoogle ScholarPubMed
Benner, P. (1985). Quality of life: A phenomenological perspective on explanation, prediction, and understanding in nursing science. ANS: Advances in Nursing Science, 8, 1–14. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/3933410Google ScholarPubMed
Bradley, E.H., Prigerson, H., Carlson, M.D., et al. (2004). Depression among surviving caregivers: Does length of hospice enrollment matter? The American Journal of Psychiatry, 161, 2257–2262. doi: 10.1176/appi.ajp.161.12.2257.CrossRefGoogle ScholarPubMed
Brumley, R., Enguidanos, S., Jamison, P., et al. (2007). Increased satisfaction with care and lower costs: Results of a randomized trial of in-home palliative care. Journal of the American Geriatrics Society, 55, 993–1000. doi: 10.1111/j.1532-5415.2007.01234.x.CrossRefGoogle ScholarPubMed
Choi, K.S., Chae, Y.M., Lee, C.G., et al. (2005). Factors influencing preferences for place of terminal care and of death among cancer patients and their families in Korea. Supportive Care in Cancer, 13, 565–572. doi: 10.1007/s00520-005-0809-4.CrossRefGoogle ScholarPubMed
Christ, G. & Sadhna, D. (2009). Chronic illness and aging, section 1: The demographics of illness and chronic diseases. Alexandria: The National Center for Gerontologic Social Work Education. Available at http://www.cswe.org/File.aspx?id=24133.Google Scholar
Enguidanos, S.M., Cherin, D. & Brumley, R. (2005). Home-based palliative care study: Site of death, and costs of medical care for patients with congestive heart failure, chronic obstructive pulmonary disease, and cancer. Journal of Social Work in End-of-Life & Palliative Care, 1, 37–56.CrossRefGoogle ScholarPubMed
Eoin, T., Connor, M., Kearney, P., et al. (2002). A prospective study of preferred versus actual place of death among patients referred to a palliative care home-care service. Irish Medical Journal, 95(8), 232–235.Google Scholar
Field, M. & Cassel, C. (1997). Approaching death: Improving care at the end of life: A report of the Institute of Medicine. Retrieved from http://books.google.com/books?hl=en&lr=&id=OWWYAWvyIWgC&oi=fnd&pg=PR1&dq=Approaching+death:+Improving+care+at+the+end+of+life&ots=DsV2xUSxwT&sig=7FE8WAezjKlzRGKOlAaELnEb570.Google Scholar
Forbat, L., McManus, E. & Haraldsdottir, E. (2012). Clinical implications for supporting caregivers at the end of life: Findings from a qualitative study. Contemporary Family Therapy, 34, 282–292. doi: 10.1007/s10591-012-9194-6.CrossRefGoogle Scholar
Funk, L., Stajduhar, K., Toye, C., et al. (2010 a). Part 1: Home-based family caregiving at the end of life: A comprehensive review of published quantitative research (1998–2008). Palliative Medicine, 24, 573–593. doi: 10.1177/0269216310371411.CrossRefGoogle Scholar
Funk, L., Stajduhar, K., Toye, C., et al. (2010 b). Part 2: Home-based family caregiving at the end of life: A comprehensive review of published qualitative research (1998–2008). Palliative Medicine, 24, 594–607. doi: 10.1177/0269216310371411.CrossRefGoogle ScholarPubMed
Goldsteen, M., Houtepen, R., Proot, I.M., et al. (2006). What is a good death? Terminally ill patients dealing with normative expectations around death and dying. Patient Education and Counseling, 64, 378–386. doi: 10.1016/j.pec.2006.04.008.CrossRefGoogle ScholarPubMed
Gomes, B. & Higginson, I.J. (2004). Home or hospital? Choices at the end of life. Journal of the Royal Society of Medicine, 97, 413–414. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/22508971.CrossRefGoogle ScholarPubMed
Gomes, B. & Higginson, I.J. (2006). Factors influencing death at home in terminally ill patients with cancer: Systematic review. BMJ: British Medical Journal, 332, 515–521. doi: 10.1136/bmj.38740.614954.55.CrossRefGoogle ScholarPubMed
Gott, M., Seymour, J., Bellamy, G., et al. (2004). Older people's views about home as a place of care at the end of life. Palliative Medicine, 18, 460–467. doi: 10.1191/0269216304pm889oa.CrossRefGoogle ScholarPubMed
Grande, G., Todd, C., Barclay, S., et al. (2000). A randomized controlled trial of a hospital at home service for the terminally ill. Palliative Medicine, 14, 375–385. doi: 10.1191/026921600701536200.CrossRefGoogle ScholarPubMed
Grande, G.E., Farquhar, M.C. & Barclay, S. (2004). Caregiver bereavement outcome: Relationship with hospice at home, satisfaction with care, and home death. Journal of Palliative Care, 20(2), 69–77.CrossRefGoogle ScholarPubMed
Grande, G., Stajduhar, K., Aoun, S., et al. (2009). Supporting lay carers in end-of-life care: Current gaps and future priorities. Palliative Medicine, 23, 339–344. doi: 10.1177/0269216309104875.CrossRefGoogle ScholarPubMed
Higginson, I.J. & Sen-Gupta, G.J. (2000). Place of care in advanced cancer: A qualitative systematic literature review of patient preferences. Journal of Palliative Medicine, 3, 287–300. doi: 10.1089/jpm.2000.3.287.CrossRefGoogle Scholar
Higginson, I.J. & Costantini, M. (2008). Dying with cancer, living well with advanced cancer. European Journal of Cancer, 44, 1414–1424. doi: 10.1016/j.ejca.2008.02.024.Google ScholarPubMed
Hirano, Y., Yamamoto-Mitani, N., Ueno, M., et al. (2011). Home care nurses' provision of support to families of the elderly at the end of life. Qualitative Health Research, 21(2), 199–213. doi: 10.1177/1049732310383866.CrossRefGoogle ScholarPubMed
Holdsworth, L. & Fisher, S. (2010). A retrospective analysis of preferred and actual place of death for hospice patients. International Journal of Palliative Nursing, 16(9), 424, 426, 428 passim. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/20871496.CrossRefGoogle ScholarPubMed
Irwin, S. & Ferris, F.D. (2008). The opportunity for psychiatry in palliative care. Canadian Journal of Psychiatry, 53, 713–724. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/19087465.CrossRefGoogle ScholarPubMed
Jordhøy, M.S., Fayers, P., Saltnes, T., et al. (2000). A palliative-care intervention and death at home: A cluster randomised trial. Lancet, 356, 888–893. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/11036893.CrossRefGoogle Scholar
Lokker, M.E., Van Zuylen, L., Veerbeek, L., et al. (2012). Awareness of dying: It needs words. Supportive Care in Cancer, 20, 1227–1233. doi: 10.1007/s00520-011-1208-7.CrossRefGoogle ScholarPubMed
McCall, K. & Rice, A.M. (2005). What influences decisions around the place of care for terminally ill cancer patients? International Journal of Palliative Nursing, 11, 541–547. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/16301958.CrossRefGoogle ScholarPubMed
McGraw, L. & Walker, A.J. (2004). Negotiating care: Ties between aging mothers and their caregiving daughters. The Journals of Gerontology, Series B: Psychological Sciences and Social Sciences, 59, S324–S332. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/15576863.CrossRefGoogle ScholarPubMed
McNamara, B. (2004). Good enough death: Autonomy and choice in Australian palliative care. Social Science & Medicine, 58, 929–938. doi: 10.1016/j.socscimed.2003.10.042.CrossRefGoogle ScholarPubMed
Muramatsu, N., Hoyem, R.L. & Yin, H. (2008). Place of death among older Americans: Does state spending on home- and community-based services promote home death? Medical Care, 46, 829–838.CrossRefGoogle ScholarPubMed
Neergaard, M.A., Jensen, A.B., Sondergaard, J., et al. (2011). Preference for place-of-death among terminally ill cancer patients in Denmark. Scandinavian Journal of Caring Sciences, 25, 627–636. doi: 10.1111/j.1471-6712.2011.00870.x.CrossRefGoogle ScholarPubMed
Patrick, D.L., Engelberg, R. & Curtis, J.R. (2001). Evaluating the quality of dying and death. Journal of Pain and Symptom Management, 22, 717–726. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/11532585.Google ScholarPubMed
Pritchard, R.S., Fisher, E., Teno, J., et al. (1998). Influence of patient preferences and local health system characteristics on the place of death. Journal of the American Geriatrics Society, 46, 1242–1250.CrossRefGoogle ScholarPubMed
Ratner, E., Norlander, L. & McSteen, K. (2001). Death at home following a targeted advance-care planning process at home: The kitchen table discussion. Journal of the American Geriatrics Society, 49, 778–781. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/11454117.CrossRefGoogle ScholarPubMed
Ray, A., Block, S.D., Friedlander, R.J., et al. (2006). Peaceful awareness in patients with advanced cancer. Journal of Palliative Medicine, 9, 1359–1368. doi: 10.1089/jpm.2006.9.1359.CrossRefGoogle ScholarPubMed
Retrum, J.H., Nowels, C.T. & Bekelman, D.B. (2013). Patient and caregiver congruence: The importance of dyads in heart failure care. The Journal of Cardiovascular Nursing, 28(2), 129–136. doi: 10.1097/JCN.0b013e3182435f27.CrossRefGoogle ScholarPubMed
Salmon, J.R., Kwak, J., Acquaviva, K.D., et al. (2005). Transformative aspects of caregiving at life's end. Journal of Pain and Symptom Management, 29, 121–129. doi: 10.1016/j.jpainsymman.2004.12.008.CrossRefGoogle ScholarPubMed
Shepperd, S., Wee, B. & Straus, S. (2012). Hospital at home: Home-based end of life care. The Cochrane Database of Systematic Reviews, 6(7). doi: 10.1002/14651858.CD009231.Google Scholar
Singer, Y., Bachner, Y.G., Shvartzman, P., et al. (2005). Home death: The caregivers' experiences. Journal of Pain and Symptom Management, 30, 70–74. doi: 10.1016/j.jpainsymman.2005.01.016.CrossRefGoogle ScholarPubMed
Slort, W. & Blankenstein, A. (2011). Facilitators and barriers for GP–patient communication in palliative care: A qualitative study among GPs, patients, and end-of-life consultants. The British Journal of General Practice, 61, 167–172. doi: 10.3399/bjgp11X567081.Results.CrossRefGoogle ScholarPubMed
Stajduhar, K.I., Martin, W.L., Barwich, D., et al. (2008). Factors influencing family caregivers' ability to cope with providing end-of-life cancer care at home. Cancer Nursing, 31, 77–85. doi: 10.1097/01.NCC.0000305686.36637.b5.CrossRefGoogle ScholarPubMed
Steinhauser, K.E., Christakis, N.A., Clipp, E.C., et al. (2000). Factors considered important at the end of life by patients, family, physicians, and other care providers. The Journal of the American Medical Association, 284, 2476–2482.CrossRefGoogle ScholarPubMed
Steinhauser, K.E., Christakis, N.A., Clipp, E.C., et al. (2001). Preparing for the end of life: Preferences of patients, families, physicians, and other care providers. Journal of Pain and Symptom Management, 22, 727–737. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/11532586.CrossRefGoogle ScholarPubMed
Strohbuecker, B., Eisenmann, Y., Galushko, M., et al. (2011). Palliative care needs of chronically ill nursing home residents in Germany: Focusing on living, not dying. International Journal of Palliative Nursing, 17, 27–34. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/21278671.CrossRefGoogle Scholar
Tang, S.T. (2003). When death is imminent: Where terminally ill patients with cancer prefer to die and why. Cancer Nursing, 26, 245–251.CrossRefGoogle ScholarPubMed
Tang, S.T., Chen, C.C.-H., Tang, W.-R., et al. (2010). Determinants of patient–family caregiver congruence on preferred place of death in Taiwan. Journal of Pain and Symptom Management, 40, 235–245. doi: 10.1016/j.jpainsymman.2009.12.018.CrossRefGoogle ScholarPubMed
Taylor, D.H., Ostermann, J., Van Houtven, C.H., et al. (2007). What length of hospice use maximizes reduction in medical expenditures near death in the U.S. Medicare program? Social Science & Medicine, 65, 1466–1478. doi: 10.1016/j.socscimed.2007.05.028.CrossRefGoogle ScholarPubMed
Teno, J., Casey, V., Welch, L., et al. (2001). Patient-focused, family-centered end-of-life medical care: Views of the guidelines and bereaved family members. Journal of Pain and Symptom Management, 22, 738–751. Retrieved from http://ukpmc.ac.uk/abstract/MED/11532587.CrossRefGoogle ScholarPubMed
Temel, J.S., Greer, J.A., Muzikansky, A., et al. (2010). Early palliative care for patients with metastatic non-small-cell lung cancer. The New England Journal of Medicine, 363(8), 733–742. doi: 10.1056/NEJMoa1000678.CrossRefGoogle ScholarPubMed
Teno, J.M., Clarridge, B.R., Casey, V., et al. (2004). Family perspectives on end-of-life care at the last place of care. The Journal of the American Medical Association, 291, 88–93. doi: 10.1001/jama.291.1.88.CrossRefGoogle ScholarPubMed
Thomas, C., Morris, S.M. & Clark, D. (2004). Place of death: Preferences among cancer patients and their carers. Social Science & Medicine, 58, 2431–2444. doi: 10.1016/j.socscimed.2003.09.005.CrossRefGoogle ScholarPubMed
von Gunten, C.F. (2012). Evolution and effectiveness of palliative care. The American Journal of Geriatric Psychiatry, 20, 291–297. doi: 10.1097/JGP.0b013e3182436219.CrossRefGoogle ScholarPubMed
Walker, S., Read, S. & Priest, H. (2011). Identifying, documenting, and reviewing preferred place of death: An audit of one UK hospice. International Journal of Palliative Nursing, 17, 546–551.CrossRefGoogle ScholarPubMed
Ward-Griffin, C., Oudshoorn, A., Clark, K., et al. (2007). Mother–adult daughter relationships within dementia care: A critical analysis. Journal of Family Nursing, 13, 13–32. doi: 10.1177/1074840706297424.CrossRefGoogle ScholarPubMed
Weibull, A., Olesen, F. & Neergaard, M.A. (2008). Caregivers' active role in palliative home care — to encourage or to dissuade? A qualitative descriptive study. BMC Palliative Care, 7, 15. doi: 10.1186/1472-684X-7-15.CrossRefGoogle ScholarPubMed
Wright, A., Zhang, B., Ray, A., et al. (2008). Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. The Journal of the American Medical Association, 300, 1665–1673. doi: 10.1001/jama.300.14.1665.CrossRefGoogle ScholarPubMed
Wright, A., Keating, N.L., Balboni, T., et al. (2010). Place of death: Correlations with quality of life of patients with cancer and predictors of bereaved caregivers' mental health. Journal of Clinical Oncology, 28, 4457–4464. doi: 10.1200/JCO.2009.26.3863.CrossRefGoogle ScholarPubMed