CONTEXT: End-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.

OBJECTIVES: To describe symptom prevalence, relief and management during the last week of life, as well as end-of-life communication, in patients with ESKD.

METHODS: This 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 (ICD-10-SE; N18.5 or N18.9), during 2011 and 2012 were selected.

RESULTS: 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/in-patient palliative care and 5% in palliative home care. Of all patients, 19% died alone. Bereavement support was offered to 38% of families.

CONCLUSION: Even if death is expected, the majority of patients dying with ESKD had unmet palliative care needs regarding symptom management, advance care planning, and bereavement support.