Unmet Palliative Care Needs Among Patients With End-Stage Kidney Disease : A National Registry Study About the Last Week of Life
(2018) In Journal of Pain and Symptom Management 55(2). p.236-244- Abstract
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 (International Classification of Diseases, Tenth Revision, Sweden; N18.5 or N18.9), during 2011 and 2012 were selected. Results: About 472 patients were included. Of six predefined symptoms, pain was the most... (More)
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 (International Classification of Diseases, Tenth Revision, Sweden; N18.5 or N18.9), during 2011 and 2012 were selected. Results: About 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. Conclusion: Even if death is expected, most patients dying with ESKD had unmet palliative care needs regarding symptom management, advance care planning, and bereavement support.
(Less)
- author
- Axelsson, Lena ; Alvariza, Anette ; Lindberg, Jenny LU ; Öhlén, Joakim ; Håkanson, Cecilia ; Reimertz, Helene ; Fürst, Carl Johan LU and Årestedt, Kristofer
- organization
- publishing date
- 2018
- type
- Contribution to journal
- publication status
- published
- subject
- keywords
- Dialysis, End of life, End-stage kidney disease, Palliative care, Registries, Symptom
- in
- Journal of Pain and Symptom Management
- volume
- 55
- issue
- 2
- pages
- 236 - 244
- publisher
- Elsevier
- external identifiers
-
- pmid:28941964
- scopus:85038826057
- ISSN
- 0885-3924
- DOI
- 10.1016/j.jpainsymman.2017.09.015
- language
- English
- LU publication?
- yes
- id
- 379c5654-a865-4c30-848a-52b23c34fbcf
- date added to LUP
- 2018-01-10 13:21:52
- date last changed
- 2023-01-07 03:18:12
@article{379c5654-a865-4c30-848a-52b23c34fbcf,
abstract = {{<p>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 (International Classification of Diseases, Tenth Revision, Sweden; N18.5 or N18.9), during 2011 and 2012 were selected. Results: About 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. Conclusion: Even if death is expected, most patients dying with ESKD had unmet palliative care needs regarding symptom management, advance care planning, and bereavement support.</p>}},
author = {{Axelsson, Lena and Alvariza, Anette and Lindberg, Jenny and Öhlén, Joakim and Håkanson, Cecilia and Reimertz, Helene and Fürst, Carl Johan and Årestedt, Kristofer}},
issn = {{0885-3924}},
keywords = {{Dialysis; End of life; End-stage kidney disease; Palliative care; Registries; Symptom}},
language = {{eng}},
number = {{2}},
pages = {{236--244}},
publisher = {{Elsevier}},
series = {{Journal of Pain and Symptom Management}},
title = {{Unmet Palliative Care Needs Among Patients With End-Stage Kidney Disease : A National Registry Study About the Last Week of Life}},
url = {{http://dx.doi.org/10.1016/j.jpainsymman.2017.09.015}},
doi = {{10.1016/j.jpainsymman.2017.09.015}},
volume = {{55}},
year = {{2018}},
}