Unmet Palliative Care Needs Among Patients With End-Stage Kidney Disease: A National Registry Study About the Last Week of Life |
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| Authors: | Lena Axelsson Anette Alvariza Jenny Lindberg Joakim Öhlén Cecilia Håkanson Helene Reimertz Carl-Johan Fürst Kristofer Årestedt |
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| Affiliation: | 1. Center for Collaborative Palliative Care, Faculty of Health and Life Sciences, Linnaeus University, Kalmar, Sweden;2. Sophiahemmet University, Stockholm, Sweden;3. Department of Health Care Sciences, Palliative Research Centre, Ersta Sköndal University College, Stockholm, Sweden;4. Capio Palliative Care Unit, Dalen Hospital, Stockholm, Sweden;5. Unit of Medical Ethics, Department of Clinical Sciences, Faculty of Medicine, Lund University, Lund, Sweden;6. Department of Nephrology, Skåne University Hospital, Malmö, Sweden;g. Centre for Person-Centred Care and Institute of Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden;h. Department of Nursing Science, Sophiahemmet University, Stockholm, Sweden;i. Center for Collaborative Palliative Care, Växjö, Sweden;j. Unit of Palliative Care, Region Kronoberg, Växjö, Sweden;k. The Institute for Palliative Care, Lund University and Region Skåne, Lund, Sweden;l. Faculty of Health and Life Sciences, Linnaeus University, Kalmar, Sweden;m. Department of Research, Kalmar County Hospital, Kalmar, Sweden |
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| 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. |
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| Keywords: | Dialysis end of life end-stage kidney disease palliative care registries symptom |
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