Background: Heart failure is a disease with high morbidity, mortality and physical and psychological burden. Patients with heart failure have symptoms as severe and distressing as those of cancer patients. Likewise, the knowledge about care oriented towards palliation provided close to death is sparse.
Purpose: To describe symptom prevalence and key aspects of palliative care the last week of life for patients with heart failure, from the perspective of health care professionals.Methods: Data was taken from the Swedish Register of Palliative Care, 2011 and 2012 (n=3981). Inclusion criteria were; heart failure as underlying cause of death (ICD-10; I50.0, I50.1 & I50.9), expected death and 18 years or older. During this period, the register covered 58% of all deaths in Sweden. Variables were described using univariate statistics.
Results: The sample consisted of 3981 patients (63% women) with a mean age of 88.1 (SD=7.1) years. The most common reported symptom was pain (62%), followed by rattles (51%), anxiety (39%), shortness of breath (29%), confusion (25%), and nausea (11%). Symptom relief was most prominent for pain and anxiety. Still, 25% and 38% respectively were partly or not relieved. Poorer relief was found for patients suffering shortness of breath, nausea and rattles. More than half of patients were partly or not reviled, 61%, 58% and 55% respectively. Poorest symptom relief was showed for patients with confusion, 85 % were partly or not reviled. Validated self-rating scales were seldom used to assess symptoms. Pain was more often assessed (12%) than other symptoms (8%). Two third of the patients (72%) and almost half of family members (39%) did not have an end of life discussions with a physician. One fifth (17%) died alone without family members or health care professionals present.
Conclusions: Our findings indicate that the palliative care is inadequate for patients with heart failure during their last week of life. Symptom management needs to be improved, for example by structured use of validated symptom rating scales. End of life discussions needs to be improved, both for patients and family members.
Sage Publications, 2017. Vol. 16, p. S58-S59, article id 155