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'We have to discuss it': cancer patients' advance care planning impressions following educational information about cardiopulmonary resuscitation.

ABSTRACT: Most cancer patients desire information about care options at the end of life, including cardiopulmonary resuscitation (CPR). Communicating such care options can be challenging and is part of advance care planning (ACP). Our prior studies with video educational media produced data on patients' categoric preferences (yes/no/unsure) for CPR; however, the thematic underpinnings of these educated preferences in patients treated for advanced cancer aren't well known.Qualitative thematic content analysis of participants' responses in a randomized trial of an educational video (V) or narrative (N) about CPR in patients with advanced gastrointestinal cancers. Responses were independently coded and categorized for thematic content by two reviewers.Of 54 study participants, 26 total (41% of V arm, 56% of N arm) articulated questions, comments, or both. Reviewer analyses demonstrated thematic consensus and resulted in seven distinct themes listed in decreasing order of prevalence: (a) ACP should be started early; (b) educational information about CPR affirmed participants' existing beliefs/knowledge/values about advanced illness; (c) participants were apprehensive about ACP but wanted to discuss it; (d) gaps in knowledge about ACP emerged; (e) CPR information was helpful/acceptable; (f) physicians should be involved in ACP; and (g) medical questions about critical illness arose.Findings identified that while sometimes difficult to discuss, advance care planning is desired, deemed helpful, and ideally begun early by clinicians, and that video education is an appropriate and affirming initiator of discussions. These themes are incorporated into our ongoing research on cancer patient-specific values and education about care options.

SUBMITTER: Epstein AS

PROVIDER: S-EPMC5507607 | biostudies-other | 2015 Dec

REPOSITORIES: biostudies-other

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Project description:BackgroundPatients undergoing hemodialysis have a high mortality rate and yet underutilize palliative care and hospice resources. The Shared Decision Making-Renal Supportive Care (SDM-RSC) intervention focused on goals of care conversations between patients and family members with the nephrologist and social worker. The intervention targeted deficiencies in communication, estimating prognosis, and transition planning for seriously ill dialysis patients. The intervention showed capacity to increase substantially completion of advance care directives. The HIGHway Project, adapted from the previous SDM-RSC, scale up training social workers or nurses in dialysis center in advance care planning (ACP), and then support them for a subsequent 9-month action period, to engage in ACP conversations with patients at their dialysis center regarding their preferences for end-of-life care.MethodsWe will train between 50-60 dialysis teams, led by social workers or nurses, to engage in ACP conversations with patients at their dialysis center regarding their preferences for end-of-life care. This implementation project uses the Knowledge to Action (KTA) Framework within the Consolidated Framework for Implementation Research (CFIR) to increase adoption and sustainability in the participating dialysis centers. This includes a curriculum about how to hold ACP conversation and coaching with monthly teleconferences through case discussion and mentoring. An application software will guide on the process and provide resources for holding ACP conversations. Our project will focus on implementation outcomes. Success will be determined by adoption and effective use of the ACP approach. Patient and provider outcomes will be measured by the number of ACP conversations held and documented; the quality and fidelity of ACP conversations to the HIGHway process as taught during education sessions; impact on knowledge and skills; content, relevance, and significance of ACP intervention for patients, and Supportive Kidney Care (SKC) App usage. Currently HIGHway is in the recruitment stage.DiscussionEffective changes to advance care planning processes in dialysis centers can lead to institutional policy and protocol changes, providing a model for patients receiving dialysis treatment in the US. The result will be a widespread improvement in advance care planning, thereby remedying one of the current barriers to patient-centered, goal-concordant care for dialysis patients.Trial registrationThe George Washington University Protocol Record NCR213481, Honoring Individual Goals and Hopes: Implementing Advance Care Planning for Persons with Kidney Disease on Dialysis, is registered in ClinicalTrials.gov Identifier: NCT05324878 on April 11th, 2022.

Project description:BACKGROUND:Patients with end-stage kidney disease (ESKD) on hemodialysis have limited life expectancy, yet their palliative care needs often go unmet. The aim of this study was to identify barriers and facilitators for implementation of "Shared Decision Making and Renal Supportive Care" (SDM-RSC), an intervention to improve advance care planning (ACP) for patients with ESKD on hemodialysis. METHODS:The Consolidated Framework for Implementation Research (CFIR) was the organizing framework for this study. CFIR is a theory-based implementation framework consisting of five domains (Intervention Characteristics, Inner Setting, Outer Setting, Characteristics of Individuals, and Process), each of which has associated constructs. Potential barriers and facilitators to implementation of the SDM-RSC intervention were identified through observation of study procedures, surveys of social workers nephrologists, study participants, and family members, and assessment of intervention fidelity. RESULTS:Twenty-nine nephrologists and 24 social workers, representing 18 outpatient dialysis units in Massachusetts (n?=?10) and New Mexico (n?=?8), were trained to conduct SDM-RSC intervention sessions. A total of 102 of 125 patient enrolled in the study received the intervention; 40 had family members present. Potential barriers and facilitators to implementation of the SDM-RSC intervention were identified in each of the five CFIR domains. Barriers included complexity of the intervention; challenges to meeting with patients on non-dialysis days; difficulties scheduling intervention sessions due to nephrologists' and social workers' caseloads; perceived need for local policy change regarding ACP; perceived need for additional ACP training for social workers and nephrologists; and lack of endorsement of the intervention by some staff members. Facilitators included: training for social workers, national dialysis chain leadership engagement and the institution of social worker/nephrologist clinic champions. CONCLUSIONS:ACP for patients on hemodialysis can have a positive impact on end-of-life outcomes for patients and their families but does not take place routinely. The barriers to effective implementation of interventions to improve ACP identified in this study might be addressed by: adapting the intervention for local contexts with input from clinicians, dialysis staff, patients and families; providing nephrologists and social workers additional training prior to delivering the intervention; and developing policy that routinizes ACP for hemodialysis patients. TRIAL REGISTRATION:Clinicaltrials.gov NCT02405312. Registered 04/01/2015.

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'We have to discuss it': cancer patients' advance care planning impressions following educational information about cardiopulmonary resuscitation.

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