End-of-life care in hematological malignancies – a nationwide comparative study on the Swedish Register of Palliative Care

Abstract

Background Patients with hematological malignancies are less likely to be referred to specialized palliative care, and more likely to receive aggressive end-of-life care than patient with solid tumors. The Swedish Register of Palliative Care (SRPC) collects end-of-life care quality data from a majority of health facilities in Sweden. We here use the national data from the SRPC to evaluate the quality of end-of-life care in patients with hematological malignancies in Sweden. Methods In a retrospective, observational registry study all adult registered cancer deaths in the years 2011–2019 were included. For the main analysis, patients with unexpected deaths or co-morbidities were excluded. Descriptive statistics and multiple logistic regression, adjusting for age and sex, were used. Results A total of 119 927 patients were included, 8 550 with hematological malignancy (HM) and 111 377 with solid tumor (ST), corresponding to 43% of all deaths due to HM and 61% of ST deaths during the observed period. Significantly more ST patients than HM received end-of-life care in a specialized palliative unit (hospice, palliative ward or specialized home care), 54% vs 42% (p<0.001), and this difference could be seen also in the very old (80+). End-of-life care quality measures were significantly worse for HM patients than ST patients, which could partly be explained by the lower receipt of specialized palliative care. The most common symptom in both groups were pain, followed by anxiety. HM patients were less likely to achieve complete symptom relief (p<0.001) which appears to be related to the receipt of specialized palliative care. Conclusion Patients with hematological malignancies are more likely to die in emergency hospital and less likely to receive specialized palliative competence in end-of-life. This also translates into less qualitative end-of-life care and less efficient symptom relief.