Quality of end-of-life care in patients with dementia compared to patients with cancer: A population-based register study

INTRODUCTION: Globally, dementia is one of the leading causes of death. Given the growing elderly population in the world, the yearly number of deaths by dementia is expected to increase. Patients dying from dementia are reported to suffer from a burden of symptoms similar to that of patients with cancer, but receive less medication against symptoms, have a lower probability of palliative care planning and seldom have access to specialised palliative care. Studies investigating the quality of palliative care in dementia are scarce. The aim of this Swedish national study was to compare the quality of end-of-life care between patients with dementia and patients with cancer regardless of place of care. METHODS: Thirteen end-of-life care quality indicators collected by the Swedish Register of Palliative Care (SRPC) were compared between patients dying from dementia and patients dying from cancer. Data were collected from deaths occurring in nursing homes, hospitals, specialised and general palliative home care, and palliative in-patient units during a three-year period (during March 2012 to February 2015). Analyses were performed using a multivariable logistic regression model, adjusted for age and gender. A subgroup of patients with Alzheimer’s disease was identified and compared to patients with other and unspecified types of dementia. RESULTS: A total of 4624 deaths from Alzheimer’s disease, 11 804deaths from other dementia diagnoses and 51 609 deaths from cancer were included. For six of the 13 quality indicators examined (prescription of PRN drugs against nausea and anxiety, information and bereavement support offered to next of kin, pain assessment and specialised palliative care consultations), poorer outcomes were shown for the dementia group in comparison to the cancer group. Two outcomes (prevalence of pressure ulcers and fluid therapy during the last 24 hours in life) showed better outcomes for the dementia group. The outcomes for the 13 quality indicators were similar for patients with Alzheimer’s disease compared to patients with other and unspecified types of dementia. CONCLUSIONS: The findings in this study indicates that patients dying from Alzheimer’s disease and other types of dementia receive a poorer quality of end-of-life care concerning several important end-of-life care areas when compared to patients dying from cancer. Guidelines for end-of-life care in Sweden cannot explain or justify these differences. Further studies are needed to find possible ways to improve end-of-life care in the large and growing group of patients dying from dementia.