Symptom Relief and Palliative Care during the Last Week of Life among Patients with Heart Failure: A National Register Study

Kristofer Årestedt, Anette Alvariza, Kurt Boman, Joakim Öhlén, Ida Goliath, Cecilia Håkanson, Carl Johan Fürst, Margareta Brännström

Heart failure is a disease with high morbidity, mortality, and physical and psychological burden. More knowledge about the care provided for patients with heart failure close to death is needed. The aim was to describe key aspects of palliative care during the last week of life in patients with heart failure, as reported by healthcare professionals. This is a national register study. The study included 3981 patients with diagnosed heart failure as the underlying cause of death. Data were obtained from the Swedish Register of Palliative Care, a national quality register that focuses on patients' last week of life, independent of diagnosis or care setting. The register includes information about care interventions connected with key aspects of palliative care. Data are reported retrospectively by a nurse or physician at the healthcare unit where the patient dies. Only 4.2% of patients with heart failure received specialized palliative care. In their last week of life, symptom prevalence was high, validated scales were seldom used, and symptoms were unsatisfactorily relieved. Around one-fifth (17%) of the patients in the study died alone. Less than half of family members had been offered bereavement support (45%). Moreover, one-third (28%) of the patients and more than half (61%) of the family members were reported to have had end-of-life discussions with a physician during the illness trajectory. The results indicate inadequate palliative care for patients with heart failure during their last week of life.