An Interview Study of Patient and Caregiver Perspectives on Advance Care Planning in ESRD

Sellars, Marcus; Clayton, Josephine M.; Morton, Rachael L.; Luckett, Tim; Silvester, William; Spencer, Lucy; Pollock, Carol; Walker, Rowan G.; Kerr, Peter G.; Tong, Allison

doi:10.1053/j.ajkd.2017.07.021

Cited by 52 publications

(83 citation statements)

References 29 publications

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“…These findings are consistent with previously identified systemic barriers to ACP in nephrology 18,19 and reinforce the importance of a collaborative approach between clinicians who facilitate ACP conversations and other clinicians in the renal unit and increased training, support, and awareness of ACP for nephrologists to support decisions that align with the patients' preferences. Furthermore, although we found no instances of caregivers overruling the patient's preferences at end-of-life in this study, a recent qualitative study suggests that caregivers may experience difficulty overcoming personal and decisional conflict adhering to the CKD patient's ACP preferences at end-of-life 21 and require additional support in this regard.…”

Section: Discussioncontrasting

confidence: 81%

Case‐control study of end‐of‐life treatment preferences and costs following advance care planning for adults with end‐stage kidney disease

et al. 2019

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Section: Discussioncontrasting

confidence: 81%

Case‐control study of end‐of‐life treatment preferences and costs following advance care planning for adults with end‐stage kidney disease

et al. 2019

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“…Past research shows that even when facilitated by a health professional, people can become distressed by ACP and misinterpret the intent of discussion to signify the immediate death of the patient, if ACP is initiated or introduced without giving sufficient context or sensitivity. 25,26 Similarly, in our review, some volunteers felt uncomfortable facilitating ACP because they struggled to visualize what end of life would be like for a patient 15 and some felt uncertain about discussing treatment outcomes with patients. 17 Risk management processes, including robust screening methods, clear role definition and scope, support and governance processes, and follow-up of volunteers, 21 may help to mitigate some of these concerns.…”

Section: Discussionmentioning

confidence: 97%

Volunteer Involvement in Advance Care Planning: A Scoping Review

Sellars

Simpson

Kelly

et al. 2019

Journal of Pain and Symptom Management

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Context. Volunteer involvement may support organizations to initiate and operationalize complex interventions such as advance care planning (ACP). Objectives. A scoping review was conducted to map existing research on volunteer involvement in ACP and to identify gaps in current knowledge base. Methods. We followed the PRISMA extension for Scoping Reviews (PRISMA-ScR) guidelines. The review included studies of any design reporting original research. ACP was defined as any intervention aimed at supporting people to consider and communicate their current and future health treatment goals in the context of their own preferences and values. Studies were included if they reported data relating to volunteers at any stage in the delivery of ACP. Results. Of 11 studies identified, nine different ACP models (initiatives to improve uptake of ACP) were described. Most of the models involved volunteers facilitating ACP conversations or advance care directive completion (n ¼ 6); and three focused on ACP education, training, and support. However, a framework for volunteer involvement in ACP was not described; the studies often provided limited detail of the scope of volunteers' roles in ACP, and in three of the models, volunteers delivered ACP initiatives in addition to undertaking other tasks, in their primary role as a volunteer navigator. Increased frequency of ACP conversation or documentation was most commonly used to evaluate the effectiveness of the studies, with most showing a trend toward improvement. Conclusions. Current literature on volunteer involvement in ACP is lacking a systematic approach to implementation. We suggest future research should focus on person-centered outcomes related to ACP to evaluate the effectiveness of volunteer involvement.

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“…Patients need to be made aware of the options of medical management without dialysis, such as supportive care and/or comfort measures and hospice care, when appropriate. [46][47][48]…”

Section: Timing and Preparation For Dialysis Initiationmentioning

confidence: 99%

Dialysis initiation, modality choice, access, and prescription: conclusions from a Kidney Disease: Improving Global Outcomes (KDIGO) Controversies Conference

Chan

Blankestijn

Dember

et al. 2019

Kidney International

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Globally, the number of patients undergoing maintenance dialysis is increasing, yet throughout the world there is significant variability in the practice of initiating dialysis. Factors such as availability of resources, reasons for starting dialysis, timing of dialysis initiation, patient education and preparedness, dialysis modality and access, as well as varied "country-specific" factors significantly affect patient experiences and outcomes. As the burden of end-stage kidney disease (ESKD) has increased globally, there has also been a growing recognition of the importance of patient involvement in determining the goals of care and decisions regarding treatment. In January 2018, KDIGO (Kidney Disease: Improving Global Outcomes) convened a Controversies Conference focused on dialysis initiation, including modality choice, access, and prescription. Here we present a summary of the conference discussions, including identified knowledge gaps, areas of controversy, and priorities for research. A major novel theme represented during the conference was the need to move away from a "one-size-fits-all" approach to dialysis and provide more individualized care that incorporates patient goals and preferences while still maintaining best practices for quality and safety. Identifying and including patient-centered goals that can be validated as quality indicators in the context of diverse health care systems to achieve equity of outcomes will require alignment of goals and incentives between patients, providers, regulators, and payers that will vary across health care jurisdictions.

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An Interview Study of Patient and Caregiver Perspectives on Advance Care Planning in ESRD

Cited by 52 publications

References 29 publications

Case‐control study of end‐of‐life treatment preferences and costs following advance care planning for adults with end‐stage kidney disease

Case‐control study of end‐of‐life treatment preferences and costs following advance care planning for adults with end‐stage kidney disease

Volunteer Involvement in Advance Care Planning: A Scoping Review

Dialysis initiation, modality choice, access, and prescription: conclusions from a Kidney Disease: Improving Global Outcomes (KDIGO) Controversies Conference

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