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J Pain Symptom Manage. 2018 Feb;55(2):236-244. doi: 10.1016/j.jpainsymman.2017.09.015. Epub 2017 Sep 21.

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

Author information

1
Center for Collaborative Palliative Care, Faculty of Health and Life Sciences, Linnaeus University, Kalmar, Sweden; Sophiahemmet University, Stockholm, Sweden. Electronic address: lena.axelsson@shh.se.
2
Department of Health Care Sciences, Palliative Research Centre, Ersta Sköndal University College, Stockholm, Sweden; Capio Palliative Care Unit, Dalen Hospital, Stockholm, Sweden.
3
Unit of Medical Ethics, Department of Clinical Sciences, Faculty of Medicine, Lund University, Lund, Sweden; Department of Nephrology, Skåne University Hospital, Malmö, Sweden.
4
Centre for Person-Centred Care and Institute of Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.
5
Department of Nursing Science, Sophiahemmet University, Stockholm, Sweden.
6
Center for Collaborative Palliative Care, Växjö, Sweden; Unit of Palliative Care, Region Kronoberg, Växjö, Sweden.
7
The Institute for Palliative Care, Lund University and Region Skåne, Lund, Sweden.
8
Faculty of Health and Life Sciences, Linnaeus University, Kalmar, Sweden; Department of Research, Kalmar County Hospital, Kalmar, Sweden.

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 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.

KEYWORDS:

Dialysis; end of life; end-stage kidney disease; palliative care; registries; symptom

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