Background: Living with severe chronic heart failure (CHF) in palliative care has been little studied. Aim: The aim of this study is to illuminate meaning of li...

Background: The Swedish Palliative Registry is a nationwide quality registry aimed at facilitating improvement in end-of-life care. The goal is for the registry to list and report quality indicators related to care during the last week of life in all cases expected death in Sweden. Aim: To examine the quality of care during the last week of life as reported to the registry for patients with heart disease compared to those with cancer. Method: A retrospective registry study. Results: Patients dying of heart disease compared to those dying from cancer had more shortness of breath, fewer drugs prescribed as needed against the usual symptoms and often died alone. Furthermore, they and their close relatives received less information about the imminence of death and bereavement follow-up was less common. The healthcare personnel were less aware of the heart disease patients’ symptoms and less often knew about where they wished to die. Conclusion: Great differences were found in registered end-of-life care suggesting that the care given to patients with heart disease and cancer was unequal even after adjustment for age, sex and setting at the time of death. If our observational findings are confirmed in future studies there is obviously a need for new models for end-of-life management in order to facilitate the provision of equal care to dying patients regardless of diagnosis.

Guidelines have concluded that there is a great need for new models of integrated care, e.g. heart failure and palliative care, in order to facilitate equality of care for dying patients, regardless of diagnosis. We found no evidence in the literature concerning the advantages and effects of integrated heart failure and palliative advanced home care for patients with severe chronic heart failure. The primary aim is to study the effects of integrated Palliative advanced homecarRE and heart FailurE caRE (PREFER) on patients’ symptom burden, quality of life, and activities of daily living (ADL) as compared to usual care. Prospective, randomized study with an open-evaluation PROBE design. Optimally treated outpatients with chronic heart failure of varying aetiologies in New York Heart Association classes III−IV will be eligible to participate. The PREFER study is designed to investigate whether a new concept of managing patients with severe chronic heart failure by integrating palliative homecare and active heart failure treatment will reduce symptom burden, increase quality of life and ADL, and reduce the number of hospitalizations in patients with severe chronic heart failure.