The purpose of this paper is to describe the variations in and factors influencing family members' decisions to provide home-based palliative care. Findings were part of a larger ethnographic study examining the social context of home-based palliative caregiving. Data from participant observations and in-depth interviews with family members (n=13) providing care to a palliative patient at home, interviews with bereaved family members (n=47) and interviews with health care providers (n=25) were subjected to constant comparative analysis. Findings indicate decisions were characterized by three types. Some caregivers made uninformed decisions, giving little consideration to the implications of their decisions. Others made indifferent decisions, whereby they reluctantly agreed to provide care at home, and still others negotiated decisions for home care with the dying person. Decisions were influenced by three factors: fulfilling a promise to the patient to be cared for at home, desiring to maintain a ‘normal family life’ and having previous negative encounters with institutional care. Findings suggest interventions are needed to better prepare caregivers for their role, enhance caregivers' choice in the decision-making process, improve care for the dying in hospital, and consider the development of alternate options for care.
Douglass L . The ecstasy and agony of family caregiving . West J Nurs Res1999; 21: 447–449 .
2.
McCorkle R , Pasacreta JV . Enhancing caregiver outcomes in palliative care . Cancer Control2001; 8: 36–45 .
3.
Statistics Canada. Who cares? Caregiving in the 1990s. 1996. Retrieved from: www.statcan.ca. Last accessed 13th May 2001.
4.
Canadian Senate Subcommittee on End-of-Life Care . Quality end-of-life care: the right of every Canadian. Ottawa: Minister of Supply and Services Canada , 2000.
5.
Romanow RJ . Building on values: the future of health care in Canada. Ottawa: Minister of Supply and Services Canada , 2002.
6.
Gomas J . Palliative care at home: a reality or ‘mission impossible’?Palliat Med1993; 7: 45–59 .
7.
McNeil C . A good death . J Palliat Care1998; 14: 5–6 .
8.
Cantwell P , Turco S , Brenneis C , Hanson J , Neumann CM , Bruera E . Predictors of home death in palliative care cancer patients . J Palliat Care2000; 16: 23–28 .
9.
DeConno F , Caraceni A , Groff L , et al. Effect of home care on the place of death of advanced cancer patients . Eur J Cancer1996; 32A: 1142–1147 .
10.
Stajduhar KI , Davies B . Death at home: challenges for families and directions for the future . J Palliat Care1998; 14: 8–14 .
11.
Beck-Friis B , Strang P . The family in hospital-based home care with special reference to terminally ill cancer patients . J Palliat Care1993; 6: 5–13 .
12.
Wilson DM . End-of-life care preferences of Canadian senior citizens with caregiving experience . JAdv Nurs2000; 31: 1416–1421 .
13.
Grande GE , Addington-Hall JM , Todd CJ . Place of death and access to home care services: are certain patient groups at a disadvantage?Soc Sci Med1998; 47: 565–579 .
14.
King G , Mackenzie J , Smith H , Clark D . Dying at home: evaluation of a hospice rapid-response service . Int J Palliat Nurs2000; 16: 280–287 .
15.
Stajduhar KI , Davies B . Palliative care at home: reflections on HIV/AIDS family caregiving experiences . J Palliat Care1998; 14: 14–22 .
16.
Buntin MB , Huskamp H . What is known about the economics of end-of-life care for medicare beneficiaries?Gerontologist2002; 42: 40–48 .
17.
Dudgeon D , Kristjanson L . Home versus hospital death: assessment of preferences and clinical challenges . Can Med Assoc J1995; 152: 337–340 .
18.
Davies B , Chekryn-Reimer J , Brown P , Martens N . Fading away: the experience of transition in families with terminal illness. New York: Baywood , 1995.
19.
Fainsinger RL , Demoissac D , Cole J , Mead-Wood K , Lee E . Home versus hospice inpatient care: discharge characteristics of palliative care patients in an acute care hospital . J Palliat Care2000; 16: 29–34 .
20.
Karlsen S , Addington-Hall J . How do cancer patients who die at home differ from those who die elsewhere?Palliat Med1998; 12: 279–286 .
21.
Lubin S . Palliative care: could your patient have been managed at home?J Palliat Care1992; 8: 18–22 .
22.
Collett M . At home with dying. Boston, MA: Shambhala , 1999.
23.
Moore MK . Dying at home: a way of maintaining control for the person with ALS/MND . Palliat Med1993; 7: 65–68 .
24.
Thorpe G . Enabling more dying people to remain at home . Br Med J1993; 307: 915–918 .
25.
Dunlop RJ , Davies RJ , Hockley J . Preferred versus actual place of death: a hospital care support team experience . Palliat Med1989; 3: 197–201 .
26.
Fried TR , van Doorn C , O'Leary JR , Tinetti ME , Drickamer MA . Older persons' preferences for site of terminal care . Ann Intern Med1999; 131: 109–112 .
27.
Gilbar O , Steiner M . When death comes: where should people die?Hosp J1996; 11: 31–49 .
28.
McWhinney IR , Bass MJ , Orr V . Factors associated with location of death (home or hospital) of patients referred to a palliative care team . Can Med Assoc J1995; 152: 337–340 .
29.
Pritchard RS , Fisher ES , Teno JM , et al. In fluence of patient preferences and local health system characteristics on the place of death . J Am Geriatr Soc1998; 46: 1242–1250 .
30.
Townsend J , Frank AO , Fermont D , et al. Terminal cancer care and patients' preference for place of death: a prospective study . Br Med J1990; 301: 415–417 .
31.
Mezey M , Neveloff Dubler N , Mitty E , Brody AA . What impact do setting and transition have on the quality of life at the end of life and the quality of the dying process?Gerontologist2002; 42: 54–67 .
32.
Hinton J . Can home care maintain an acceptable quality of life for patients with terminal cancer and their relatives . Palliat Med1994; 8: 183–196 .
33.
Keizer MC , Kozak JF , Scott JF . Primary care providers' perceptions of care . J Palliat Care1992; 8: 8–12 .
34.
Hinton J . Which patients with terminal cancer are admitted from home care?Palliat Med1994; 8: 197–210 .
35.
Addington-Hall J , Karlsen S . Do home deaths increase distress in bereavement?Palliat Med2000; 14: 161–162 .
36.
Aranda SK , Hayman-White K . Home caregivers of the person with advanced cancer: an Australian perspective . Cancer Nurs2001; 24: 300–307 .
37.
Brazil K , Bedard M , Willison K . Factors associated with home death for individuals who receive home support services: a retrospective cohort study . BMC Palliat Care2002; 1: 2–10 .
38.
Cameron JI , Franche RL , Cheung AM , Stewart DE . Lifestyle interference and emotional distress in family caregivers of advanced cancer patients . Cancer2002; 94: 521–527 .
39.
Stajduhar KI . Examining the perspectives of family members involved in the delivery of palliative care at home . J Palliat Care2003; 19: 27–35 .
40.
Decima Research Incorporated . National profile of family caregivers in Canada –2002: Final report prepared for Health Canada. Ottawa: Decima Research Incorporated , 2002.
41.
Spradley JP . The ethnographic interview. New York, NY: Holt, Reinhart & Winston , 1979.
42.
Morse JM , Field PA . Qualitative research methods for health professionals, second edition. Thousand Oaks, CA: Sage , 1995.
43.
Stewart A . The ethnographer's method. Thousand Oaks, CA: Sage , 1998.
44.
Morse JM . Strategies for sampling. In Morse JM ed. Qualitative nursing research: a contemporary dialogue. Newbury Park, CA: Sage , 1991.
45.
Sandelowski M . Sample size in qualitative research . Res Nurs Health1995; 18: 179–183 .
46.
Emerson RM , Fretz RI , Shaw LL . Writing ethnographic fieldnotes. Chicago, IL: The University of Chicago Press , 1995.
47.
Bottorff JL , Steele R , Davies B , Garossino C , Porterfield P , Shaw M . Striving for balance: palliative care patients' experiences of making everyday choices . J Palliat Care1998; 14: 7–17 .
48.
Heyland DK , Tranmer J , Feldman-Stewart D . End-of-life decision making in the seriously ill hospitalized patient: An organizing framework and results of a preliminary study . J Palliat Care2000; 16: S31–S39 .
49.
Hofmann JC , Wenger NS , Davies RB . Patient preferences for communication with physicians about end of life decisions . Ann Intern Med1997; 127: 1–12 .
50.
Sahlberg-Blom E , Ternestedt BM , Johansson JE . Patient participation in decision making at the end of life as seen by a close relative . Nurs Ethics2000; 7: 296–313 .
51.
Aranda S , Peerson A . Caregiving in advanced cancer: lay decision making . J Palliat Care2001; 17: 270–276 .
52.
Payne S , Smith P , Dean S . Identifying the concerns of informal carers in palliative care . Palliat Med1999; 13: 37–44 .
53.
Northouse L , Peters-Golden J . Cancer and the family: strategies to assist spouses . Semin Oncol Nurs1993; 9: 74–82 .
54.
Northouse LL , Mood D , Templin T , Mellon S , George T . Couples' patters of adjustment to colon cancer . Soc Sci Med2000; 50: 271–284 .
55.
Harding R , Higginson I . Working with ambivalence: informal caregivers of patients at the end of life . Support Cancer Care2001; 9: 642–645 .
56.
Drought TS , Koenig BA . ‘Choice’ in end-of-life decision making: Researching fact or fiction?Gerontologist2002; 42: 114–128 .
57.
McPherson CJ , Higginson IJ , Hearn J . Effective methods of giving information in cancer: a systematic literature review of randomized controlled trials . J Public Health Med2001; 23: 227–234 .
58.
Dubler NN . Accommodating the home care client. In Zuckerman C , Dubler NN , Collopy B eds. Home health care options: a guide for older persons and concerned families. New York, NY: Plenum Press , 1990: 141–165.
59.
Dubler NN , Marcus L . Mediating bioethical disputes: a practice guide. New York, NY: United Hospital of New York , 1994.
60.
Arras JD , Neveloff-Dubler N . Ethical and social implications of high-tech home care. In Arras JD ed. Bringing the hospital home. Baltimore, MD: Johns Hopkins University Press , 1995: 1–31.
61.
Addington-Hall JM , MacDonald LD , Anderson HR , Freeling P . Dying from cancer: the views of bereaved family and friends about the experiences of terminally ill patients . Palliat Med1991; 5: 207–214 .
62.
Hockley JM , Dunlop R , Davies RJ . Survey of distressing symptoms in dying patients and their families in hospital and the response to a symptom control team . Br Med J1988; 296: 1715–1717 .
63.
Mills M , Davies HTO , MacRae WA . Care of dying patients in a hospital . Br Med J1994; 309: 583–586 .
64.
Sudnow D . Passing on: the social organization of dying. Englewood Cliffs, NJ: Prentice-Hall , 1967.
65.
SUPPORT Principal Investigators . A controlled trial to improve care for seriously ill hospitalized patients. The study to understand prognoses and preferences for outcomes and risks of treatment (SUPPORT) . JAm Med Assoc1995; 274: 1591–1598 .
66.
Jacobson J , Francis L , Battin M , et al. Dialogue to action: lessons learned from some family members of deceased patients at an interactive program in seven Utah hospitals . J Clin Ethics1997; 8: 359–371 .
67.
Bowling A . The hospitalisation of death: should more people die at home?J Med Ethics1983; 9: 158–161 .
68.
Roe DJ . Palliative care 2000-Home care . J Palliat Care1992; 8: 28–32 .
69.
Heyland DK , Lavery JV , Tranmer JE , Shortt SED , Taylor SJ . Dying in Canada: is it an institutionalized, technologically supported experience?J Palliat Care2000; 16: S10–S16 .
70.
Stoddard S . The hospice movement: a better way of caring for the dying. New York, NY: Stein & Day , 1978.
71.
Brown MA , Stetz K . The labor of caregiving: a theoretical model of caregiving during potentially fatal illness . Qual Health Res1999; 9: 182–197 .
