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

Axelsson, Lena; Alvariza, Anette; Lindberg, Jenny LU ; Öhlén, Joakim; Håkanson, Cecilia; Reimertz, Helene; Fürst, Carl Johan LU and Årestedt, Kristofer (2017) In Journal of Pain and Symptom Management
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.

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author
organization
publishing date
type
Contribution to journal
publication status
epub
subject
keywords
Dialysis, End of life, End-stage kidney disease, Palliative care, Registries, Symptom
in
Journal of Pain and Symptom Management
publisher
Elsevier
external identifiers
  • 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
2018-01-11 10:06:12
@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},
  keyword      = {Dialysis,End of life,End-stage kidney disease,Palliative care,Registries,Symptom},
  language     = {eng},
  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},
  year         = {2017},
}