Home and Community Care Digest

Home and Community Care Digest December 2004 : 0-0

Palliative care among terminal cancer patients

Abstract

The authors examined the place of death preference of forty-one terminally ill cancer patients and eighteen of their informal caregivers in the Morecambe Bay area, northwest of England. Thirteen factors were identified as shaping the place of death preference of patients and caregivers. They are organized into four thematic domains: the informal care resource, the management of the body, experiences in services, and existential perspective. The research revealed a stronger preference for deaths in a hospice than had been anticipated.
Background: The delivery of palliative care services is becoming a prominent concern in home care since more patients are choosing to spend their last days at home rather than in an institution. Several factors that may affect the place of death include informal caregiver support, the health status and emotional condition of the primary caregiver, the availability and accessibility of community-based services, the patient's demographics and attitude towards death, and the tumour type. Home death continues to be the preference for place of death. This journal article is quite relevant in Canada since the First Ministers signed a 10 Year Plan to Strengthen Health Care, in September 2004, to provide first dollar coverage by 2006 for end-of-life care, which includes case management, nursing, palliative-specific pharmaceuticals and personal care at the end of life, along with two weeks provision of short-term acute care and two weeks provision of mental health home care.

Methods: Initially, sixty-nine patients, who were estimated to have up to three months of life remaining, were contacted to participate in this two year study but three refused to participate, another twenty-four became too ill to partake in the interviews, and one declined since he had gone into remission. The researchers conducted an initial patient interview soon after the study began, followed by a second interview four weeks later and then tracking interviews carried out by telephone every two to four weeks until death occurred. Interviews were also conducted with the main informal caregiver soon after the patient entered the study and in the post-bereavement period. Because of rapid advancement of disease for some of the patients, twenty-four patients participated in the second interview and only seventeen were able to complete the interview series. As well, eighteen caregivers consented to be interviewed and nine continued in the study during the post-bereavement period. Researchers examined thirteen factors that would predict the preference for place of death. These factors were subsequently organized into four thematic domains: informal resources, management of the body, experience of services and existential perspectives.

Findings: The findings show that 36% of the patients selected a home death as their preference. However, other studies reported a home-death preference as high as 58%. The preference for a hospice death was 29%. Informal resources for patients and caregivers show that the patients were concerned about the emotional and physical burden on their families. Yet, most caregivers were willing to care for the patient and bear the care burden. With respect to management of the body, patients wished to maintain their dignity if they were to potentially lose control of their bodily functions. The patients' experience of services was directly correlated with the preference for place of death. For example, if the service in the institution was perceived to be good, then the patient would be less averse to dying there. Finally, some patients had no preference for place of death because of their attitudes and beliefs.

Conclusions: There was one significant limitation in this study; the palliative care nurses were the only source in the recruitment of patients. This led to an under-representation of patients who (i) have no contact with palliative services and (ii) had tumours that require close contact with hospital services and which may influence the hospital as a place of preference. The patients' preference is strongly correlated with the array of existing home-care services offered and of respite services to ease the caregiver's burden. The authors recommend additional investment in specialist and non-specialist community-based palliative care services delivered by palliative care - trained teams to offer more patients the option of a home death. Overall, patients were in favour of death at home over hospice but there was a higher than anticipated preference for the death in a hospice.

Reference: Thomas C., Morris S.M. and Clark D. "Place of death: preferences among cancer patients and their caregivers". Social Science & Medicine, 2004: 58, 2431-2444.

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