Abstract
BackgroundMost terminally ill cancer patients prefer to die at home, but a majority die in institutional settings. Research questions about this discrepancy have not been fully answered. This study applies artificial intelligence and machine learning techniques to explore the complex network of factors and the cause-effect relationships affecting the place of death, with the ultimate aim of developing policies favouring home-based end-of-life care.MethodsA data mining algorithm and a causal probabilistic model for data analysis were developed with information derived from expert knowledge that was merged with data from 116 deceased cancer patients in southern Switzerland. This data set was obtained via a retrospective clinical chart review.ResultsDependencies of disease and treatment-related decisions demonstrate an influence on the place of death of 13%. Anticancer treatment in advanced disease prevents or delays communication about the end of life between oncologists, patients and families. Unknown preferences for the place of death represent a great barrier to a home death. A further barrier is the limited availability of family caregivers for terminal home care. The family’s preference for the last place of care has a high impact on the place of death of 51%, while the influence of the patient’s preference is low, at 14%. Approximately one-third of family systems can be empowered by health care professionals to provide home care through open end-of-life communication and good symptom management. Such intervention has an influence on the place of death of 17%. If families express a convincing preference for home care, the involvement of a specialist palliative home care service can increase the probability of home deaths by 24%.ConclusionConcerning death at home, open communication about death and dying is essential. Furthermore, for the patient preference for home care to be respected, the family’s decision for the last place of care seems to be key. The early initiation of family-centred palliative care and the provision of specialist palliative home care for patients who wish to die at home are suggested.
Highlights
Most terminally ill cancer patients prefer to die at home, but a majority die in institutional settings
A high probability of home death (97%) is observed for patients who live in a rural environment, have a low symptom burden, have spent few days in a hospital, have an open awareness of dying, have a suitable family system for home care, have congruent preferences for home care with their families, receive home care assistance provided by a home care service, have access to GP home visits and have access to specialist palliative home care
The data set collected in only one cancer centre represents a further limitation, as cultural and regional effects could affect some results. Conclusions these limitations need to be considered, we think that the main results can be of interest to health care providers in a global context, as the study reveals two crucial issues for confronting incurable cancer: difficulties in communicating about death and dying and the limited availability of EOL home care by family caregivers
Summary
Most terminally ill cancer patients prefer to die at home, but a majority die in institutional settings. The trajectory of cancer diseases is usually characterised by a steady progression and a short phase of a clear decline prior to death that lasts weeks or months [7] These characteristics lead to the hypothesis that the approaching terminal phase of the disease might be predictable and that EOL care planning could be initiated in time to meet the patient’s wishes and preferences. The aim of the project is to identify predictors and favourable patterns for home death, as well as to examine the possibilities of interventions provided by healthcare professionals to facilitate home-based EOL Within this context, the study explores the question of which variables and dependencies between variables can be identified with respect to the POD and what knowledge can be generated for health care professionals involved in cancer care to better support the patient’s wish to die at home
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