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      Cardiopulmonary Resuscitation Preferences of People Receiving Dialysis

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          Abstract

          This cross-sectional survey study describes the cardiopulmonary resuscitation preferences of patients receiving dialysis and how these preferences are associated with their responses to questions about other aspects of end-of-life care.

          Key Points

          Question

          Do the cardiopulmonary resuscitation (CPR) preferences of patients receiving dialysis align with their responses to questions about other aspects of end-of-life care?

          Findings

          Among 876 participants in this cross-sectional survey study, most (84.2%) indicated they would definitely or probably want CPR. Preference for CPR was associated with some, but not all, of the other domains of end-of-life care that were examined; responses to questions about these other aspects of end-of-life care were not always aligned with participants’ CPR preference.

          Meaning

          Code status discussions with patients receiving dialysis should be integrated with broader conversations about their values, goals, and preferences for end-of-life care.

          Abstract

          Importance

          Whether the cardiopulmonary resuscitation (CPR) preferences of patients receiving dialysis align with their values and other aspects of end-of-life care is not known.

          Objective

          To describe the CPR preferences of patients receiving dialysis and how these preferences are associated with their responses to questions about other aspects of end-of-life care.

          Design, Setting, and Participants

          Cross-sectional survey study of a consecutive sample of patients receiving dialysis at 31 nonprofit dialysis facilities in 2 US metropolitan areas (Seattle, Washington, and Nashville, Tennessee) between April 22, 2015, and October 2, 2018. Analyses for this article were conducted between December 2018 and April 2020.

          Exposures

          Participants were asked to respond to the question “If you had to decide right now, would you want CPR if your heart were to stop beating?” Those who indicated they would probably or definitely want CPR were categorized as preferring CPR.

          Main Outcomes and Measures

          This study examined the association between preference for CPR and other treatment preferences, engagement in advance care planning, values, desired place of death, expectations about prognosis, symptoms, and palliative care needs.

          Results

          Of the 1434 individuals invited to complete the survey, 1009 agreed to participate, and 876 were included in the analytic cohort (61.1%). The final cohort had a mean (SD) age of 62.6 (14.0) years; 492 (56.2%) were men, and 528 (60.3%) were White individuals. Among 738 of 876 participants (84.2%) who indicated that they would definitely or probably want CPR (CPR group), 555 (75.2%) wanted mechanical ventilation vs 13 of 138 (9.4%) of those who did not want CPR (do not resuscitate [DNR] group) ( P < .001). A total of 249 of 738 participants (33.7%) in the CPR group vs 84 of 138 (60.9%) in the DNR group had documented treatment preferences ( P < .001). In terms of values about future care, 171 participants (23.2%) in the CPR group vs 5 of 138 (3.6%) in the DNR group valued life prolongation ( P < .001); 320 in the CPR group (43.4%) vs 109 of 138 in the DNR group (79.0%) valued comfort ( P < .001); and 247 participants (33.5%) in the CPR group vs 24 of 138 (17.4%) in the DNR group were unsure about their wishes for future care ( P < .001). In the CPR group, 207 (28.0%) had thought about stopping dialysis vs 62 of 138 (44.9%) in the DNR group ( P < .001), and 181 (24.5%) vs 58 of 138 (42.0%) had discussed stopping dialysis ( P = .001). No statistically significant associations were observed between CPR preference and documentation of a surrogate decision maker, thoughts or discussion of hospice, preferred place of death, expectations about prognosis, reported symptoms, or palliative care needs.

          Conclusions and Relevance

          The CPR preferences of patients receiving dialysis were associated with some, but not all, other aspects of end-of-life care. How participants responded to questions about these other aspects of end-of-life care were not always aligned with their CPR preference. More work is needed to integrate discussions about code status with bigger picture conversations about patients’ values, goals, and preferences for end-of-life care.

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          Most cited references68

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          The Psychology of Survey Response

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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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              End-of-life care preferences and needs: perceptions of patients with chronic kidney disease.

              Despite high mortality rates, surprisingly little research has been done to study chronic kidney disease (CKD) patients' preferences for end-of-life care. The objective of this study was to evaluate end-of-life care preferences of CKD patients to help identify gaps between current end-of-life care practice and patients' preferences and to help prioritize and guide future innovation in end-of-life care policy. A total of 584 stage 4 and stage 5 CKD patients were surveyed as they presented to dialysis, transplantation, or predialysis clinics in a Canadian, university-based renal program between January and April 2008. Participants reported relying on the nephrology staff for extensive end-of- life care needs not currently systematically integrated into their renal care, such as pain and symptom management, advance care planning, and psychosocial and spiritual support. Participants also had poor self-reported knowledge of palliative care options and of their illness trajectory. A total of 61% of patients regretted their decision to start dialysis. More patients wanted to die at home (36.1%) or in an inpatient hospice (28.8%) compared with in a hospital (27.4%). Less than 10% of patients reported having had a discussion about end-of-life care issues with their nephrologist in the past 12 months. Current end-of-life clinical practices do not meet the needs of patients with advanced CKD.
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                Author and article information

                Journal
                JAMA Netw Open
                JAMA Netw Open
                JAMA Netw Open
                JAMA Network Open
                American Medical Association
                2574-3805
                24 August 2020
                August 2020
                24 August 2020
                : 3
                : 8
                : e2010398
                Affiliations
                [1 ]Department of Medicine, University of Washington, Seattle
                [2 ]Cambia Palliative Care Center of Excellence, University of Washington, Seattle
                [3 ]Department of Medicine, Stanford University Medical Center, Palo Alto, California
                [4 ]Division of Nephrology, Geriatric Research, Education and Clinical Center, VA Palo Alto Health Care System, Palo Alto, California
                [5 ]Department of Biostatistics, University of Washington, Seattle
                [6 ]Department of Surgery, University of Washington, Seattle
                [7 ]Hospital and Specialty Medicine, VA Puget Sound Health Care System, Seattle, Washington
                [8 ]Geriatrics, VA Puget Sound Health Care System, Seattle, Washington
                [9 ]Kidney Research Institute, University of Washington, Seattle
                Author notes
                Article Information
                Accepted for Publication: May 3, 2020.
                Published: August 24, 2020. doi:10.1001/jamanetworkopen.2020.10398
                Open Access: This is an open access article distributed under the terms of the CC-BY License. © 2020 Bernacki GM et al. JAMA Network Open.
                Corresponding Author: Gwen M. Bernacki, MD, MHSA, Department of Medicine, University of Washington, 325 Ninth Ave, Mail Stop 359765, Seattle, WA 98104 ( bernacki@ 123456uw.edu ).
                Author Contributions: Dr O’Hare had full access to all of the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis. The United States Renal Data System Study of Treatment Preferences (USTATE) was conducted by members of the United States Renal Data System (USRDS) Special Study on Palliative and End-of-Life Care (Drs Engelberg, Curtis, Kurella Tamura, Lavallee, Vig, and O’Hare).
                Concept and design: Bernacki, Engelberg, Curtis, O’Hare.
                Acquisition, analysis, or interpretation of data: Bernacki, Curtis, Kurella Tamura, Brumback, Lavallee, Vig, O’Hare.
                Drafting of the manuscript: Bernacki.
                Critical revision of the manuscript for important intellectual content: All authors.
                Statistical analysis: O’Hare.
                Obtained funding: Kurella Tamura, O’Hare.
                Administrative, technical, or material support: Bernacki, Engelberg, Kurella Tamura, O’Hare.
                Supervision: Curtis, Brumback, Lavallee, O’Hare.
                Conflict of Interest Disclosures: Dr Bernacki reported receiving grants from the National Heart, Lung, and Blood Institute (NHLBI). Dr Engelberg reported receiving grants from the NHLBI (T32HL125195-04) and the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) (U01DK102150). Dr Curtis reported receiving grants from Cambia Health Foundation and the National Institutes of Health (NIH). Dr Brumback reported grants from Cambia Health Foundation and the NIH. Dr O’Hare reported receiving grants or personal fees from the American Society of Nephrology, Centers for Disease Control and Prevention, Chugai Pharmaceutical Co, Ltd, Coalition for Supportive Care of Kidney Patients, Dialysis Clinic Inc, DEVENIR Foundation, Fresenius Medical Care, Hammersmith Hospital, Health and Aging Policy Fellows Program, Japanese Society for Dialysis Therapy, Kaiser Permanente Northern California, NIDDK, University of California San Francisco, University of Pennsylvania, UpToDate, and VA Health Services Research and Development Service. No other disclosures were reported.
                Funding/Support: This work has been supported by the NHLBI (grant T32HL125195-04) and the NIDDK (grant U01DK102150) (Drs Engelberg, Curtis, Kurella Tamura, Lavallee, and O’Hare).
                Role of the Funder/Sponsor: The funding sources had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.
                Disclaimer: The data reported herein have been supplied by the USRDS. The interpretation and reporting of these data are the responsibility of the authors and in no way should be seen as official policy or interpretation of the US Government.
                Additional Contributions: We thank the following Kidney Research Institute staff members for assisting with survey administration: Linda Manahan, BA, Carlyn Clark, MSW, Kirstin O’Loughlin, MS, Lori Linke, BA, Lisa Anderson, BA, Hanna Larson, MS, Michelle Nguyen, BA, and John Kundzins, MPH. We thank Bill Peckham, BS (deceased), Carol Keller, MPA, Dori Schatell, MS, and Denise Eilers, BSN, for providing input on survey design. We thank Jonathan Himmelfarb, MD, at the Kidney Research Institute; Joyce Jackson, MHA, formerly of Northwest Kidney Centers (now retired); Karen Majchrzak, MS, and Doug Johnson, MD, at Dialysis Clinic Inc; and staff at Northwest Kidney Centers, Dialysis Clinic Inc, Puget Sound Kidney Centers, and Olympic Peninsula Kidney Center for supporting recruitment efforts. We thank Kevin Abbott, MD, and Larry Agodoa, MD, at the NIDDK for supporting this work, as well as members of the USRDS steering committee for providing valuable input on study design, including the University of Michigan team led by Rajiv Saran, MD, Vahakn Shahinian, MD, and Bruce Robinson, MD, and the University of California, Irvine team led by Kamyar Kalantar-Zadeh, MD, PhD, Csaba Kovesdy, MD, and Steven Jacobsen, MD, PhD. We thank Paul Hebert, PhD, at the University of Washington for providing guidance on statistical analyses. They were not compensated for their contributions.
                Article
                zoi200417
                10.1001/jamanetworkopen.2020.10398
                7445594
                32833017
                2bc1fc02-383f-4c0e-93cb-19ab0b9b0bd7
                Copyright 2020 Bernacki GM et al. JAMA Network Open.

                This is an open access article distributed under the terms of the CC-BY License.

                History
                : 21 February 2020
                : 3 May 2020
                Categories
                Research
                Original Investigation
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                Nephrology

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