Patient perspectives on informed decision-making surrounding dialysis initiation

Song, Mi‐Kyung; Lin, Feng‐Chang; Gilet, Constance A.; Arnold, Robert M.; Bridgman, Jessica C.; Ward, Sandra E.

doi:10.1093/ndt/gft238

Cited by 138 publications

(161 citation statements)

References 39 publications

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“…As early as 2000, the Renal Physicians Association and the American Society of Nephrology released a guideline recommending SDM as critical to decisions around initiation and withdrawal from dialysis (74,75). However, studies suggest that SDM has not been widely implemented in treatment decisions (76), and the need for development and evaluation of decision aid tools for CKD remains (77,78). In response, Boulware and colleagues (79) developed Providing Resources to Enhance Patients' Readiness to Make Decisions about Kidney Disease, a decision aid program addressing key patient concerns-morbidity/mortality, autonomy, treatment delivery, symptoms, relationships, psychologic wellbeing, and finances-to help patients and their providers work together to choose a kidney failure treatment that best meets the patients' needs.…”

Section: Innovative Approaches To Ckd Educationmentioning

confidence: 99%

Educating Patients about CKD

Narva

Norton

Boulware

2016

Clinical Journal of the American Society of Nephrology

204

190

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Patient education is associated with better patient outcomes and supported by international guidelines and organizations, but a range of barriers prevent widespread implementation of comprehensive education for people with progressive kidney disease, especially in the United States. Among United States patients, obstacles to education include the complex nature of kidney disease information, low baseline awareness, limited health literacy and numeracy, limited availability of CKD information, and lack of readiness to learn. For providers, lack of time and clinical confidence combine with competing education priorities and confusion about diagnosing CKD to limit educational efforts. At the system level, lack of provider incentives, limited availability of practical decision support tools, and lack of established interdisciplinary care models inhibit patient education. Despite these barriers, innovative education approaches for people with CKD exist, including self-management support, shared decision making, use of digital media, and engaging families and communities. Education efficiency may be increased by focusing on people with progressive disease, establishing interdisciplinary care management including community health workers, and providing education in group settings. New educational approaches are being developed through research and quality improvement efforts, but challenges to evaluating public awareness and patient education programs inhibit identification of successful strategies for broader implementation. However, growing interest in improving patient-centered outcomes may provide new approaches to effective education of people with CKD.

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Section: Innovative Approaches To Ckd Educationmentioning

confidence: 99%

Educating Patients about CKD

Narva

Norton

Boulware

2016

Clinical Journal of the American Society of Nephrology

204

190

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“…In a large survey of .2000 patients, ,25% of patients indicated that heath care providers gave "excellent" information when choosing HD or PD (6). Other large studies also found that a significant proportion of patients (approximately 40%-65%) felt that they did not have a choice in dialysis modality or that they were not informed of their choices (7,8) (choice A is incorrect). However, patient involvement in modality decision making is associated with greater patient satisfaction once on dialysis (8).…”

Section: Discussion Of Question 1amentioning

confidence: 99%

American Society of Nephrology Quiz and Questionnaire 2015: ESRD/RRT

Perazella

Choi

2016

CJASN

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The Nephrology Quiz and Questionnaire remains an extremely popular session for attendees of the Annual Kidney Week Meeting of the American Society of Nephrology. During the 2015 meeting, the conference hall was once again overflowing with eager quiz participants. Topics covered by the experts included electrolyte and acid-base disorders, glomerular disease, ESRD and dialysis, and kidney transplantation. Complex cases representing each of these categories together with single best answer questions were prepared and submitted by the panel of experts. Before the meeting, training program directors of nephrology fellowship programs and nephrology fellows in the United States answered the questions through an internet-based questionnaire. During the live session, members of the audience tested their knowledge and judgment on the same series of case-oriented questions in a quiz. The audience compared their answers in real time using a cellphone application containing the answers of the nephrology fellows and training program directors. The results of the online questionnaire were displayed, and then, the quiz answers were discussed. As always, the audience, lecturers, and moderators enjoyed this highly educational session. This article recapitulates the session and reproduces selected content of educational value for the readers of the Clinical Journal of the American Society of Nephrology. Enjoy the clinical cases and expert discussions.

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“…Many patients receiving hemodialysis express a desire to know their treatment options, as well as their prognosis (13). Surveys and interviews of patients undergoing hemodialysis suggest that most patients believe they were not given sufficient information, or other viable choices, on their ESRD and hemodialysis (1,(12)(13)(14)(15)(16). We believe that this needs to change and that regular, iterative exploration of patients' goals of care can effect this change.…”

Section: Preserving Patient Autonomymentioning

confidence: 99%

“…We concluded that a narrow interpretation of beneficence that focuses only on life extension fails to consider that many elderly patients have other goals and priorities that are equally if not more important to them (7,8). Although major professional societies (9,10) and the Institute of Medicine (11) recommend that patients' goals and values be used to guide treatment recommendations (10), this is not consistently done, particularly for high-risk or frail elderly patients (1,7,(12)(13)(14)(15)(16).…”

Section: Introductionmentioning

confidence: 99%

The Ethics of Chronic Dialysis for the Older Patient

Thorsteinsdottir

Swetz

Albright³

2015

Clinical Journal of the American Society of Nephrology

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Recent research highlights the potential burdens of hemodialysis for older patients with significant comorbidities, for whom there is clinical equipoise regarding the net benefits. With the advent of accountable care and bundled payment, previous incentives to offer hemodialysis to as many patients as possible are being replaced with a disincentive to dialyze high-risk patients. While this may offset the harm of overtreatment for some elderly patients, some voice concerns that the pendulum will swing too far back, with a return to ageist rationing of hemodialysis. Nephrologists should ensure that the patient's rights to be informed about the potential benefits and burdens of hemodialysis are respected, particularly because age, functional status, nutritional status, and comorbidities affect the net balance between benefits and burdens. Nephrologists are also called on to help patients make a decision, for which the patient's goals of care guide determination of potential benefit from hemodialysis. This article addresses concerns about present overtreatment and future risk of undertreatment of older adults with ESRD. It also discusses ways in which providers can ethically approach the question of initiation of hemodialysis in the elderly patient by including patient-specific estimates of prognosis, shared decision-making, and the use of specialist palliative care clinicians or ethics consultants for complex cases.

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Patient perspectives on informed decision-making surrounding dialysis initiation

Abstract: A majority of patients felt unprepared and ill-informed about the initiation of dialysis. Improving the extent of IDM about dialysis may optimize patient preparation prior to starting treatment and their perceptions about the decision-making process.

Cited by 138 publications

References 39 publications

Educating Patients about CKD

Educating Patients about CKD

American Society of Nephrology Quiz and Questionnaire 2015: ESRD/RRT

The Ethics of Chronic Dialysis for the Older Patient

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