Hostname: page-component-cd9895bd7-jn8rn Total loading time: 0 Render date: 2024-12-22T01:09:44.586Z Has data issue: false hasContentIssue false
  • English
  • Français

Family stories of end-of-life cancer care when unable to fulfill a loved one's wish to die at home

Published online by Cambridge University Press:  13 March 2014

Karen Seal ,
Craig D. Murray  and
Lesley Seddon
Karen Seal
Affiliation:
Lancashire Teaching Hospitals NHS Foundation Trust, Preston, United Kingdom
Craig D. Murray*
Affiliation:
School of Health and Medicine, Lancaster University, Lancaster, United Kingdom
Lesley Seddon
Affiliation:
Lancashire Teaching Hospitals NHS Foundation Trust, Preston, United Kingdom
*
Address correspondence and reprint requests to: Craig D. Murray, School of Health and Medicine, Furness Building, Lancaster University, Lancaster LA1 4YT, United Kingdom. E-mail: [email protected]
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective:

Control over place of death is deemed important, not only in providing a “good death,” but also in offering person-centered palliative care. Despite the wish to die at home being endorsed by many, few achieve it. The present study aimed to explore the reasons why this wish is not fulfilled by examining the stories of ten individuals who lost a loved one to cancer.

Method:

We adopted a narrative approach, with stories synthesized to create one metastory depicting plot similarities and differences.

Results:

Stories were divided into four chapters: (1) the cancer diagnosis, (2) the terminal stage and advancement of death, (3) death itself, and (4) reflections on the whole experience. Additionally, several reasons for cessation of home care were uncovered, including the need to consider children's welfare, exhaustion, and admission of the loved one by professionals due to a medical emergency. Some participants described adverse effects as a result of being unable to continue to support their loved one's wish to remain at home.

Significance of Results:

Reflections upon the accounts are provided with a discussion around potential clinical implications.

Keywords

CancerCarerCopingBereavementHome deathPalliative care
Type
Original Articles
Information
Palliative & Supportive Care , Volume 13 , Issue 3 , June 2015 , pp. 473 - 483
Copyright
Copyright © Cambridge University Press 2014 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

REFERENCES

Addington-Hall, J. & Karlsen, S. (2000). Do home deaths increase distress in bereavement? Palliative Medicine, 14, 161–162.Google Scholar
Andershed, B. & Harstade, C.W. (2007). Next of kin's feelings of guilt and shame in end-of-life care. Contemporary Nurse, 27, 61–72.Google Scholar
Bell, C.L., Somogyi-Zalud, E. & Masaki, K.H. (2010). Factors associated with congruence between preferred and actual place of death. Journal of Pain and Symptom Management, 39, 591–604.Google Scholar
Benkel, I., Wijk, H. & Molander, U. (2010). Using coping strategies is not denial: Helping loved ones adjust to living with a patient with a palliative diagnosis. Journal of Palliative Medicine, 13, 1119–1123.Google Scholar
Bodenmann, G. (1997). Dyadic coping: A systemic-transactional conceptualization of stress and coping in couples. Swiss Journal of Psychology, 54, 34–49.Google Scholar
Bramwell, L., MacKenzie, J., Laschinger, H., et al. (1995). Need for overnight respite for primary caregivers of hospice clients. Cancer Nursing, 18, 337–343.Google Scholar
Breitbart, W., Poppito, S., Rosenfeld, B., et al. (2012). Pilot randomized controlled trial of individual meaning-centered psychotherapy for patients with advanced cancer. Journal of Clinical Oncology, 30, 1304–1309.Google Scholar
Calhoun, L.G. & Tedeschi, R.G. (1999). Facilitating posttraumatic growth: A clinician's guide. London: Lawrence Erlbaum Associates Publishers.Google Scholar
Carlick, A. & Biley, F.C. (2004). Thoughts on the therapeutic use of narrative in the promotion of coping in cancer care. European Journal of Cancer Care, 13, 308–317.Google Scholar
Carlsson, M.E. & Rollison, B. (2003). A comparison of patients dying at home and patients dying at a hospice: Sociodemographic factors and caregivers' experiences. Palliative & Supportive Care, 1, 33–39.Google Scholar
Carter, P.A., Mikan, S.Q. & Simpson, C. (2009). A feasibility study of a two-session home-based cognitive behavioural therapy-insomnia intervention for bereaved family caregivers. Palliative & Supportive Care, 7, 197–206.Google Scholar
Classen, C., Koopman, C. Angell, K., et al. (1996). Coping styles associated with psychological adjustment to advanced breast cancer. Health Psychology, 15, 434–437.Google Scholar
Crossley, M. (2000). Introducing narrative psychology: Self, trauma and the construction of meaning. Berkshire: Open University Press.Google Scholar
Currow, D.C., Burns, C., Agar, M., et al. (2011). Palliative caregivers who would not take on the caring role again. Journal of Pain and Symptom Management, 41, 661–672.Google Scholar
Ellershaw, J. & Ward, C. (2003). Care of the dying patient: The last hours or days of life. BMJ, 326, 30.Google Scholar
Funk, L.M., Allan, D.E. & Stajduhar, K.I. (2009). Palliative family caregivers' accounts of health care experiences: The importance of security. Palliative & Supportive Care, 7, 435–447.Google Scholar
Friedrichsen, M.J. (2003). Justification for information and knowledge: Perceptions of family members in palliative home care in Sweden. Palliative & Supportive Care, 1, 239–245.Google Scholar
Gott, M. (2008). At odds with the end of life care strategy. Nursing Older People, 20, 16–17.Google Scholar
Grande, G. & Ewing, G. (2008). Death at home unlikely if informal carers prefer otherwise: Implications for policy. Palliative Medicine, 22, 971–972.Google Scholar
Gysels, M. & Higginson, I. (2009). Caring for a person in advanced illness and suffering breathlessness at home: Threats and resources. Palliative & Supportive Care, 7, 153–162.Google Scholar
Harding, R., Higginson, I., Leam, C., et al. (2004). Evaluation of a short-term group intervention for informal carers of patients attending a home palliative care service. Journal of Pain and Symptom Management, 27, 396–408.Google Scholar
Hasson-Ohayon, I., Goldzweig, G., Sela-Oren, T., et al. (2013). Attachment style, social support and finding meaning among spouses of colorectal cancer patients: Gender differences. Palliative & Supportive Care, 8, 1–9.Google Scholar
Higginson, I.J. & Sen-Gupta, G.J. (2000). Place of care in advanced cancer: A qualitative systematic review of patient preferences. Journal of Palliative Medicine, 3, 287–300.Google Scholar
Hinton, J. (1994). Which patients with terminal cancer are admitted from home care? Palliative Medicine, 8, 197–210.Google Scholar
Italia, S., Favara-Scacco, C., Di Cataldo, A., et al. (2008). Evaluation and art therapy treatment of the burnout syndrome in oncology units. Psycho-Oncology, 17, 676–680.Google Scholar
Kayser, K., Watson, L.E. & Andrade, J.T. (2007). Cancer as a “we-disease”: Examining the process of coping from a relational perspective. Families, Systems & Health, 25, 404–418.Google Scholar
Maslach, C. (1982). Burnout: The cost of caring. Englewood Cliffs, NJ: Prentice Hall.Google Scholar
Mehta, A., Cohen, R. & Chan, L.S. (2009). Palliative care: A need for a family systems approach. Palliative & Supportive Care, 7, 235–243.Google Scholar
McAdams, D.P. (1993). The stories we live by: Personal myths and the making of the self. London: Guilford Press.Google Scholar
McCaul, K.D., Sandgren, A.K., King, B., et al. (1999). Coping and adjustment to breast cancer. Psycho-Oncology, 8, 230–236.Google Scholar
McCormack, C. (2004). Storying stories: A narrative approach to in-depth interview conversations. International Journal of Social Research Methodology, 7, 219–236.Google Scholar
Mohr, D.C., Moran, P.J., Kohn, C., et al. (2003). Couples therapy at end of life. Psycho-Oncology, 12, 620–627.Google Scholar
Moorey, S. & Greer, S. (2002). A cognitive model of adjustment to cancer. In Cognitive behaviour therapy for people with cancer. Moorey, S. & Greer, S. (eds.), pp. 11–24. Oxford: Oxford University Press.Google Scholar
Murray, M.A. & Young, S. (2009). Where the dying live: A systematic review of determinants of place of end-of-life care. Oncology Nursing Forum, 36, 69–77.Google Scholar
Namba, M., Morita, T., Imura, C., et al. (2007). Terminal delirium: Families' experience. Palliative Medicine, 21, 587–594.Google Scholar
Parkes, C.M. (1972). Bereavement: Studies in grief in adult life. London: Tavistock Publications.Google Scholar
Prigerson, H.G., Frank, E., Kasl, S.V., et al. (1995). Complicated grief and bereavement-related depression as distinct disorders: Preliminary empirical validation in elderly bereaved spouses. American Journal of Psychiatry, 152, 22–30.Google Scholar
Ptacek, J.T., Ptacek, J.J. & Dodge, K.L. (1994). Coping with breast cancer from the perspectives of husbands and wives. Journal of Psychosocial Oncology, 12, 47–72.Google Scholar
Randall, F. & Downie, R.S. (2009). Preferred place of care and death. In End of life choices: Consensus and controversy. Randall, F. & Downie, R.S. (eds.), pp. 147–164. Oxford: Oxford University Press.Google Scholar
Skerrett, K. (1998). Couple adjustment to the experience of breast cancer. Families, Systems & Health, 16, 281–298.Google Scholar
Stajduhar, K.I. & Davies, B. (2005). Variations in and factors influencing family members' decisions for palliative home care. Palliative Medicine, 19, 21–32.Google Scholar
Suls, J. & Fletcher, B. (1985). The relative efficacy of avoidant and nonavoidant coping strategies: A meta-analysis. Health Psychology, 4, 249–288.Google Scholar
Tedeschi, R.G. & Calhoun, L.G. (1995). Trauma and transformation: Growing in the aftermath of suffering. Thousand Oaks, CA: Sage Publications.Google Scholar
Thomas, C., Morris, S.M. & Clark, D. (2004). Place of death: Preferences among cancer patients and their carers. Social Science & Medicine, 58, 2431–2444.Google Scholar
Walsh, S.M., Estrada, G.B. & Hogan, N. (2004). Individual telephone support for family caregivers of seriously ill cancer patients. Medical-Surgical Nursing, 13, 181–189.Google Scholar
Weiss, T. (2004). Correlates of posttraumatic growth in husbands of breast cancer survivors. Psycho-Oncology, 13, 260–268.Google Scholar
Wong, W.K.T., Ussher, J. & Perz, J. (2009). Strength through adversity: Bereaved cancer carers' accounts of rewards and personal growth from caring. Palliative & Supportive Care, 7, 187–196.Google Scholar
Wright, M. & Leahey, M. (2005). Nurses and families: A guide to family assessment and intervention, 4th ed. Philadelphia: Davis.Google Scholar