Unmet Palliative Care Needs Among Patients With End-Stage Kidney Disease: A National Registry Study About the Last Week of Life

Abstract

ContextEnd-stage kidney disease (ESKD) is characterized by high physical and psychological burden, and therefore, more knowledge about the palliative care provided close to death is needed. ObjectivesTo describe symptom prevalence, relief, and management during the last week of life, as well as end-of-life communication, in patients with ESKD. MethodsThis study was based on data from the Swedish Register of Palliative Care. Patients aged 18 or older who died from a chronic kidney disease, with or without dialysis treatment (International Classification of Diseases, Tenth Revision, Sweden; N18.5 or N18.9), during 2011 and 2012 were selected. ResultsAbout 472 patients were included. Of six predefined symptoms, pain was the most prevalent (69%), followed by respiratory secretion (46%), anxiety (41%), confusion (30%), shortness of breath (22%), and nausea (17%). Of patients with pain and/or anxiety, 32% and 44%, respectively, were only partly relieved or not relieved at all. Of patients with the other symptoms, a majority (55%–84%) were partly relieved or not relieved at all. End-of-life discussions were reported in 41% of patients and 71% of families. A minority died in specialized palliative care: 8% in hospice/inpatient palliative care and 5% in palliative home care. Of all patients, 19% died alone. Bereavement support was offered to 38% of families. ConclusionEven if death is expected, most patients dying with ESKD had unmet palliative care needs regarding symptom management, advance care planning, and bereavement support.