Abstract
BackgroundEmerging trends and new policies suggest that more cancer patients might die at home in the future. However, not all have equal chances of achieving this. Furthermore, there is lack of evidence to support that those who die at home experience better care and a better death than those who die as inpatients. The QUALYCARE study aims to examine variations in the quality and costs of end-of-life care, preferences and palliative outcomes associated with dying at home or in an institution for cancer patients.Methods/DesignMortality followback survey (with a nested case-control study of home vs. hospital deaths) conducted with bereaved relatives of cancer patients in four Primary Care Trusts in London. Potential participants are identified from death registrations and approached by the Office for National Statistics in complete confidence. Data are collected via a postal questionnaire to identify the informal and formal care received in the three months before death and the associated costs, relatives' satisfaction with care, and palliative outcomes for the patients and their relatives. A well-established questionnaire to measure relatives' views on the care integrates four brief and robust tools - the Client Service Receipt Inventory, the Palliative Outcome Scale, the EQ-5 D and the Texas Revised Inventory of Grief. Further questions assess patients and relatives' preferences for place of death. The survey aims to include 500 bereaved relatives (140 who experienced a home death, 205 a hospital death, 115 a hospice death and 40 a nursing home death). Bivariate and multivariate analyses will explore differences in place of death and place of end-of-life care, in preferences for place of death, patients' palliative outcomes and relatives' bereavement outcomes, in relation to place of death. Factors influencing death at home and the costs of end-of-life care by place of death will be identified.DiscussionCollecting data on end-of-life care retrospectively from bereaved relatives has ethical, practical and scientific challenges. QUALYCARE has been carefully designed to address these challenges in a robust and ethically sound population-based survey. By discovering variations in the underlying individual reality of place of death for people dying from cancer and their families, this study will advance our understanding of end-of-life care and, we hope, improve care for cancer patients and their families in the future.Trial registrationNational Institute of Health Research (NIHR) Clinical Research Network Portfolio. UKCRN7041.
Highlights
Emerging trends and new policies suggest that more cancer patients might die at home in the future
By discovering variations in the underlying individual reality of place of death for people dying from cancer and their families, this study will advance our understanding of end-of-life care and, we hope, improve care for cancer patients and their families in the future
There is a lack of evidence in the emerging area of cost measurement at the end of life to inform study design and procedures, methods and conclusions relating to costs will be in essence exploratory
Summary
The QUALYCARE study faces two main challenges. First, ethical and data protection issues and practicalities are prominent in the study and have strongly determined its design. Case-control studies such as the one nested in QUALYCARE are rare in end-of-life care research[49] despite offering a strong alternative to longitudinal studies (which pose numerous practical, ethical and methodological challenges in this field) for studying natural variation in outcomes. The QUALYCARE study could discover variations in the underlying individual reality of place of death for people dying from cancer and their families. This may include differences in the preferences, in palliative outcomes for patients, in bereavement outcomes for relatives, and in the costs of caring for people dying at home as compared to institutional settings, not just for the health care system but for families.
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