Hostname: page-component-745bb68f8f-mzp66 Total loading time: 0 Render date: 2025-01-12T21:01:08.506Z Has data issue: false hasContentIssue false
  • English
  • Français

A comparison of patients dying at home and patients dying at a hospice: Sociodemographic factors and caregivers' experiences

Published online by Cambridge University Press:  29 April 2003

MARIA E. CARLSSON  and
BRITTA ROLLISON
MARIA E. CARLSSON
Affiliation:
Department of Public Health and Caring Sciences, Uppsala University, Uppsala, Sweden
BRITTA ROLLISON
Affiliation:
Kronparkens sjukhem, Eva Lagerwalls väg 1, Uppsala, Sweden
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective: The aim of this study was to investigate whether there were any differences between patients who died at home and patients who died at a hospice, that is, sociodemographic variables, the family caregivers' experiences of burden, and their opinion of reasons for hospice care.

Methods: The study comprises a consecutive sample of family caregivers to adult patients: (I) who were cared for by the advanced palliative home care team (APHCT) and died at home, (II) who were cared for by the APHCT and died at the Hospice, (III) who were cared for and died at the Hospice in Uppsala during a period of one year. A questionnaire was mailed to caregivers and the medical records of all the patients were analyzed.

Results: The place of death differed significantly and varied according to gender and cohabitation status. Men died to a greater degree at home compared with women. The family caregivers' experiences of burden were moderate. Caregivers of patients who died at home thought that this care form has a more positive influence on the patients' quality of life than was the case in the other groups. They were also more satisfied with their own achievement. The caregivers' opinion of why patients needed hospice care was nearly the same in groups II + III, acutely developing symptoms being the most common reason.

Significance of results: This study showed that women died to a lesser degree at home than men. The explanation for this is unknown and requires further investigation. It is important to establish whether female patients or male caregivers need another type of support than male patients or female caregivers, since the aim of palliative care is that every patient who wishes to die at home should have this wish fulfilled.

Keywords

CancerCaregiverPalliative home careHospice care
Type
Research Article
Information
Palliative & Supportive Care , Volume 1 , Issue 1 , March 2003 , pp. 33 - 39
Copyright
© 2003 Cambridge University Press

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

Andershed, B. & Ternestedt, B.M. (1997). Patterns of care for patients with cancer before and after the establishment of a hospice ward. Scandinavian Journal of Caring Sciences, 11, 42–50.Google Scholar
Ashby, M. & Wakefield, M. (1993). Attitudes to some aspects of death and dying, living wills and substituted health care decision-making in South Australia: Public opinion survey for a parliamentary selected committee. Palliative Medicine, 7, 273–283.Google Scholar
Axelsson, B. & Borup Christensen, S. (1996). Place of death correlated to sociodemographic factors. A study of 203 patients dying of cancer in a rural Swedish county in 1990. Palliative Medicine, 10, 329–335.Google Scholar
Axelsson, B. & Sjödén, P.O. (1998). Quality of life of cancer patients and their spouses in palliative home care. Palliative Medicine, 12, 29–39.Google Scholar
Beck-Friis, B. (1993). Hospital-based home care of terminally ill cancer patients. The Motala model. Thesis, Uppsala University.
Beck-Friis, B. & Strang, P. (1993a). The organization of hospital-based home care for terminally ill cancer patients: The Motala model. Palliative Medicine, 7, 93–100.Google Scholar
Beck-Friis, B. & Strang, P. (1993b). The family in hospital-based home care with special reference to terminally ill cancer patients. Journal of Palliative Care, 9, 1–9.Google Scholar
Bramwell, L., Mac Kenzie, J., Lashinger, H., & Cameron, N. (1995). Need for overnight respite for primary caregivers of hospice clients. Cancer Nursing, 18, 337–343.Google Scholar
Cairns, R. & Bergman, L. (1998). Methods and Models for Studying the Individual. Thousand Oaks, CA: Sage Publications, Inc.
Cantwell, P., Turco, S., Brenneis, C., Hanson, J., Neumann, C., & Bruera, E. (2000). Predictors of home care death in palliative care cancer patients. Journal of Palliative Care, 16, 23–28.Google Scholar
De Conno, F., Caraceni, A., Groff, L., Brunelli, C., Donati, I., Tamburini, M., & Ventafridda, V. (1996). Effect of home care on the place of death of advanced cancer patients. European Journal of Cancer, 32A, 1142–1147.Google Scholar
Dunlop, R., Davies, R., & Hockely, J. (1989). Preferred versus actual place of death: A hospital palliative care support team experience. Palliative Medicine, 3, 197–201.CrossRefGoogle Scholar
Fakhoury, W., McCarty, M., & Addington-Hall, J. (1997). Carers' health status: Is it associated with their evaluation of the quality of palliative care? Scandinavian Journal of Social Medicine, 25, 296–301.Google Scholar
Fürst, C.J. (2000). Perspectives on palliative care: Sweden. Supportive Care in Cancer, 8, 441–443.Google Scholar
Gomas, J. (1993). Palliative care at home: A reality or mission impossible? Palliative Medicine, 7(suppl. 3), 45–59.Google Scholar
Greer, D. & Mor, V. (1986). An overview of National Hospice Study findings. Journal of Chronic Disease, 39, 9–26.Google Scholar
Hinton, J. (1994). Can home care maintain an acceptable quality of life for patients with terminal cancer and their relatives. Palliative Medicine, 8, 183–196.CrossRefGoogle Scholar
Howell, D. (1992). Statistical Methods for Psychology. Belmont, CA: Duxbury Press.
Hughes, S., Cummings, J., Weaver, F., Manheim, L., Braun, B., & Conrad, K. (1992). A randomized trial of cost effectiveness of VA hospital-based home care for the terminally ill. Health Services Research, 26, 801–817.Google Scholar
Hunt, R., Bonett, A., & Roder, D. (1993). Trends in terminal care of cancer patients: South Australia, 1981–1990. Australian and New Zealand Journal of Medicine, 23, 245–251.CrossRefGoogle Scholar
Johansson, L. (1998). Anhöriga som omsorgsgivare och omsorgsbehövande. In Äldreomsorgens vardag: en konferens i Göteborg 21–22 April 1998. Socialtjänstforum 3. Göteborg.
Jones, R.V.H., Hansford, J., & Fiske, J. (1993). Death from cancer at home: The carers' perspective. British Medical Journal, 306, 249–251.Google Scholar
Kristjanson, L. (1996). Family members' perceptions of palliative cancer care: Predictors of family functioning and family members' health. Journal of Palliative Care, 12, 10–20.Google Scholar
Landstingsförbundet. (1998). Hemsjukvård –en annan dimension i vården. Beställningsnr: 1897.Google Scholar
Rollison, B. & Carlsson, M. (2002). Evaluation of advanced home care (AHC). The next-of-kin's experiences. European Journal of Oncology Nursing, 6, 100–106.Google Scholar
Seale, C. (1991). A comparison of hospital and conventional care. Social Science and Medicine, 32, 147–152.Google Scholar
SOU. (2000). Utveckla kvaliteten i den palliativa vården. Bilaga till delbetänkandet döden angår oss alla-värdig värd vid livets slut. Statens offentliga utredningar 2000:6 Socialdepartementet.Google Scholar
SOU. (2001). Döden angår oss alla. Värdig vård vid livets slut. Slutbetänkande från kommittén om vård i livets slutskede. Statens offentliga utredningar 2001:6 Socialdepartementet.Google Scholar
Szebehely, M. (1998). Hustruns hjälp eller hemtjänstens? In Äldreomsorgens vardag: En konferens i Göteborg 21–22 April 1998. Socialtjänstforum 3. Göteborg.
Thorén-Todoulos, E. (1999). Psykosociala faktorer begränsar möjligheten att dö hemma. Läkartidningen, 96, 472–475.Google Scholar
Townsend, J., Frank, S., Fermont, D., Dyer, S., Karran, O., Walgrove, A., & Piper, M. (1990). Terminal cancer care and patients' preferences for place of death: A prospective study. British Medical Journal, 301, 415–417.Google Scholar
Wergeland Sørbye, L. (1997). Cancer patients who prefer to die at home. Characterisations of municipalities with several of few occurrences of home deaths. Scandinavian Journal of Caring Sciences, 13, 102–108.Google Scholar