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      End-of-life and palliative care of patients on maintenance hemodialysis treatment: a focus group study

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          Abstract

          Background

          Despite complex illness trajectories and a high symptom burden, palliative care has been sub-optimal for patients with end-stage kidney disease and hemodialysis treatment who have a high rate of hospitalization and intensive care towards end of life. There is a growing awareness that further development of palliative care is required to meet the needs of these patients and their family members. In this process, it is important to explore healthcare professionals’ views on provision of care. The aim of this study was therefore to describe nurses’ and physicians’ perspectives on end-of-life and palliative care of patients treated with maintenance hemodialysis.

          Methods

          Four focus group interviews were conducted with renal nurses (17) and physicians (5) in Sweden. Qualitative content analysis was used to analyze data.

          Results

          Participants were committed to giving the best possible care to their patients, but there were challenges and barriers to providing quality palliative care in nephrology settings. Professionals described palliative care as end-of-life care associated with hemodialysis withdrawal or palliative dialysis, but also identified care needs and possibilities that are in line with an earlier integrated palliative approach. This was perceived as complex from an organizational point of view. Participants identified challenges related to coordination of care and different perspectives on care responsibilities that impacted symptom management and patients’ quality of life. Communication issues relating to the provision of palliative care were revealed where the hemodialysis setting was regarded as an impediment, and personal and professional experiences, beliefs and knowledge were considered of major importance.

          Conclusions

          Nurses and physicians identified a need for the improvement of both late and earlier palliative care approaches. The results highlighted a requirement for and possibilities of training, counselling and support of health care professionals in the dialysis context. Further, multi-professional palliative care collaborations should be developed to improve the coordination and organization of end-of-life and palliative care of patients and their family members. A climate allowing conversations about advance care planning throughout the illness trajectory may facilitate the gradual integration of palliative care alongside life-prolonging treatment for improved support of patients and families.

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          Most cited references23

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          The prevalence of symptoms in end-stage renal disease: a systematic review.

          Symptoms in end-stage renal disease (ESRD) are underrecognized. Prevalence studies have focused on single symptoms rather than on the whole range of symptoms experienced. This systematic review aimed to describe prevalence of all symptoms, to better understand total symptom burden. Extensive database, "gray literature," and hand searches were undertaken, by predefined protocol, for studies reporting symptom prevalence in ESRD populations on dialysis, discontinuing dialysis, or without dialysis. Prevalence data were extracted, study quality assessed by use of established criteria, and studies contrasted/combined to show weighted mean prevalence and range. Fifty-nine studies in dialysis patients, one in patients discontinuing dialysis, and none in patients without dialysis met the inclusion criteria. For the following symptoms, weighted mean prevalence (and range) were fatigue/tiredness 71% (12% to 97%), pruritus 55% (10% to 77%), constipation 53% (8% to 57%), anorexia 49% (25% to 61%), pain 47% (8% to 82%), sleep disturbance 44% (20% to 83%), anxiety 38% (12% to 52%), dyspnea 35% (11% to 55%), nausea 33% (15% to 48%), restless legs 30% (8%to 52%), and depression 27% (5%to 58%). Prevalence variations related to differences in symptom definition, period of prevalence, and level of severity reported. ESRD patients on dialysis experience multiple symptoms, with pain, fatigue, pruritus, and constipation in more than 1 in 2 patients. In patients discontinuing dialysis, evidence is more limited, but it suggests they too have significant symptom burden. No evidence is available on symptom prevalence in ESRD patients managed conservatively (without dialysis). The need for greater recognition of and research into symptom prevalence and causes, and interventions to alleviate them, is urgent.
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            Executive summary of the KDIGO Controversies Conference on Supportive Care in Chronic Kidney Disease: developing a roadmap to improving quality care.

            Patients with advanced chronic kidney disease (CKD) have a high burden of physical and psychosocial symptoms, poor outcomes, and high costs of care. Current paradigms of care for this highly vulnerable population are variable, prognostic and assessment tools are limited, and quality of care, particularly regarding conservative and palliative care, is suboptimal. The KDIGO Controversies Conference on Supportive Care in CKD reviewed the current state of knowledge in order to define a roadmap to guide clinical and research activities focused on improving the outcomes of people living with advanced CKD, including those on dialysis. An international group of multidisciplinary experts in CKD, palliative care, methodology, economics, and education identified the key issues related to palliative care in this population. The conference led to a working plan to address outstanding issues in this arena, and this executive summary serves as an output to guide future work, including the development of globally applicable guidelines.
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              CKD in elderly patients managed without dialysis: survival, symptoms, and quality of life.

              Survival, symptom burden, and quality of life (QOL) are uncertain for elderly patients with advanced CKD managed without dialysis. We examined these outcomes in patients managed with renal supportive care without dialysis (RSC-NFD) and those planned for or commencing dialysis.
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                Author and article information

                Contributors
                +46 (0)70 848 9308 , lena.axelsson@shh.se
                eva.benzein@lnu.se
                jenny.lindberg@med.lu.se
                carina.persson@lnu.se
                Journal
                BMC Palliat Care
                BMC Palliat Care
                BMC Palliative Care
                BioMed Central (London )
                1472-684X
                30 October 2019
                30 October 2019
                2019
                : 18
                : 89
                Affiliations
                [1 ]GRID grid.445308.e, Department of Nursing Science, , Sophiahemmet University, ; Box 5605, 114 86 Stockholm, Sweden
                [2 ]ISNI 0000 0001 2174 3522, GRID grid.8148.5, Centre for Collaborative Palliative Care, Faculty of Health and Life Sciences, , Linnaeus University, ; Kalmar, Sweden
                [3 ]ISNI 0000 0001 0930 2361, GRID grid.4514.4, Department of Clinical Sciences, Unit of Medical Ethics, Faculty of Medicine, , Lund University, ; Lund, Sweden
                [4 ]ISNI 0000 0004 0623 9987, GRID grid.411843.b, Department of Nephrology, , Skåne University Hospital, ; Malmö, Sweden
                Author information
                http://orcid.org/0000-0002-3647-1686
                Article
                481
                10.1186/s12904-019-0481-y
                6822338
                31666038
                d6573145-66d9-4325-85ab-7c5326fc1dcd
                © The Author(s). 2019

                Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

                History
                : 17 June 2019
                : 18 October 2019
                Funding
                Funded by: FundRef http://dx.doi.org/10.13039/501100009750, Familjen Kamprads Stiftelse;
                Award ID: 20152002
                Award Recipient :
                Categories
                Research Article
                Custom metadata
                © The Author(s) 2019

                Anesthesiology & Pain management
                end-of-life care,palliative care,end-stage kidney disease,hemodialysis,physicians,nurses,focus group interviews

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