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Advance Care Planning Among Older Adults With Advanced Non-Dialysis-Dependent CKD and Their Care Partners: Perceptions Versus Reality?

ABSTRACT: Rationale & Objective:Older patients with advanced chronic kidney disease (CKD) use intensive care at the end of life and die in a hospital more frequently than patients with cancer or heart disease. Advance care planning (ACP) can help align treatment with patient preferences and improve patient-centered care, yet ACP quality and experiences among older patients with CKD and their care partners remain incompletely understood, particularly among the non-dialysis-dependent population. Study Design:In-person interviewer-administered surveys of patients 70 years and older with non-dialysis-dependent CKD stage 4 or 5 and their self-identified care partners. Setting & Participants:42 participants (31 patients, 11 care partners) at 2 clinical sites in greater Boston. Outcomes:Completion of advance directives and self-reported perceptions, preferences, and experiences of ACP. Analytical Approach:Descriptive analysis of patient and care partner surveys. McNemar test analysis to compare patient and care partner responses. Results:Most patients had written advance directives (64%) and surrogate decision makers (81%). Although patients reported positive perceptions and high trust in their clinicians' judgment, few (16%) had actually discussed preferences for life-sustaining treatment with their nephrologists. Few ACP discussions included components reflective of high-quality ACP: 16% of patients had been asked about their values concerning end-of-life care and 7% had discussed issues of decision-making capacity and consent to care should their health decline. When presented with 2 hypothetical scenarios (stroke/heart attack or dementia), nearly all patients and care partners reported a preference for comfort care over delaying death. Care partners were more likely than patients to report that they had experienced discussion components reflective of high-quality ACP with the clinical team. Limitations:Single metropolitan area; most patients did not identify a care partner; nonresponse bias and small sample size. Conclusions:Patients often believed that their clinicians understood their end-of-life wishes despite not having engaged in ACP conversations that would make those wishes known. Improving clinical ACP communication may result in end-of-life treatment that better aligns with patient goals.

SUBMITTER: Oskoui T

PROVIDER: S-EPMC7384367 | biostudies-literature | 2020 Mar-Apr

REPOSITORIES: biostudies-literature

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Advance Care Planning Among Older Adults With Advanced Non-Dialysis-Dependent CKD and Their Care Partners: Perceptions Versus Reality?

Oskoui Tira T Pandya Renuka R Weiner Daniel E DE Wong John B JB Koch-Weser Susan S Ladin Keren K

Kidney medicine 20200131 2

<h4>Rationale & objective</h4>Older patients with advanced chronic kidney disease (CKD) use intensive care at the end of life and die in a hospital more frequently than patients with cancer or heart disease. Advance care planning (ACP) can help align treatment with patient preferences and improve patient-centered care, yet ACP quality and experiences among older patients with CKD and their care partners remain incompletely understood, particularly among the non-dialysis-dependent population.<h4> ...[more]

PMID: 32734232

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Project description:More than 90,000 patients with ESRD die annually in the United States, yet advance care planning (ACP) is underutilized. Understanding patients' and families' diverse needs can strengthen systematic efforts to improve ACP.In-depth interviews were conducted with a purposive sample of patients and family/friends from dialysis units at two study sites. Applying grounded theory, interviews were audiotaped, professionally transcribed, and analyzed in an iterative process. Emergent themes were identified, discussed, and organized into major themes and subthemes.Thirteen patients and nine family/friends participated in interviews. The mean patient age was 63 years (SD 14) and five patients were women. Participants identified as black (n=1), Hispanic (n=4), Native American (n=4), Pacific Islander (n=1), white (n=11), and mixed (n=1). Three major themes with associated subthemes were identified. The first theme, "Prior experiences with ACP," revealed that these discussions rarely occur, yet most patients desire them. A potential role for the primary care physician was broached. The second theme, "Factors that may affect perspectives on ACP," included a desire for more of a connection with the nephrologist, positive and negative experiences with the dialysis team, disenfranchisement, life experiences, personality traits, patient-family/friend relationships, and power differentials. The third theme, "Recommendations for discussing ACP," included thoughts on who should lead discussions, where and when discussions should take place, what should be discussed and how.Many participants desired better communication with their nephrologist and/or their dialysis team. A number expressed feelings of disenfranchisement that could negatively impact ACP discussions through diminished trust. Life experiences, personality traits, and relationships with family and friends may affect patient perspectives regarding ACP. This study's findings may inform clinical practice and will be useful in designing prospective intervention studies to improve patient and family experiences at the end of life.

Project description:BackgroundGroup visits can support health behavior change and self-efficacy. In primary care, an advance care planning (ACP) group visit may leverage group dynamics and peer mentorship to facilitate education and personal goal setting that result in ACP engagement.ObjectiveTo determine whether the ENgaging in Advance Care Planning Talks (ENACT) group visits intervention improves ACP documentation and readiness in older adults.MethodsThis randomized clinical trial was conducted among geriatric primary care patients from the University of Colorado Hospital Seniors Clinic, Aurora, CO, from August 2017 to November 2019. Participants randomized to ENACT group visits (n = 55) participated in two 2-hour sessions with discussions of ACP topics and use of ACP tools (i.e., Conversation Starter Kit, Medical Durable Power of Attorney form, and PREPARE videos). Participants randomized to the control arm (n = 55) received the Conversation Starter Kit and a Medical Durable Power of Attorney form by mail. The primary outcomes included presence of ACP documents or medical decision-maker documentation in the electronic health record (EHR) at 6 months, and a secondary outcome was ACP readiness (validated four-item ACP Engagement Survey) at 6 months.ResultsParticipants were a mean of 77 years old, 60% female, and 79% white. At 6 months, 71% of ENACT participants had an advance directive in the EHR (26% higher) compared with 45% of control arm participants (P < .001). Similarly, 93% of ENACT participants had decision-maker documentation in the EHR (29% higher) compared with 73% in the control arm (P < .001). ENACT participants trended toward higher readiness to engage in ACP compared with control (4.56 vs 4.13; P = .16) at 6 months.ConclusionAn ACP group visit increased ACP documentation and readiness to engage in ACP behavior change. Primary care teams can explore implementation and adaptation of ACP group visits into routine care, as well as longer-term impact on patient health outcomes. J Am Geriatr Soc 68:2382-2389, 2020.

Project description:ImportanceTelehealth has been posited as a cost-effective means for improving access to care for persons with chronic conditions, including kidney disease. Perceptions of telehealth among older patients with chronic illness, their care partners, and clinicians are largely unknown but are critical to successful telehealth use and expansion efforts.ObjectiveTo identify patient, care partner, and nephrologists' perceptions of the patient-centeredness, benefits, drawbacks of telehealth compared to in-person visits.Design, setting, and participantsThis qualitative study used semistructured interviews conducted from August to December 2020 with purposively sampled patients (aged 70 years or older, chronic kidney disease stages 4 to 5), care partners, and clinicians in Boston, Massachusetts; Chicago, Illinois; Portland, Maine; and San Diego, California.Main outcomes and measuresParticipants described telehealth experiences, including factors contributing to and impeding engagement, satisfaction, and quality of care. Thematic analysis was used to analyze data.ResultsOf 60 interviews, 19 (32%) were with clinicians, 30 (50%) with patients, and 11 (18%) with care partners; 16 clinicians (84%) were nephrologists; 17 patient participants (43%) were non-Hispanic Black, and 38 (67%) were women. Four overarching themes characterized telehealth's benefits and drawbacks for patient-centered care among older, chronically ill adults: inconsistent quality of care, patient experience and engagement, loss of connection and mistrust (eg, challenges discussing bad news), and disparities with accessing telehealth. Although telehealth improved convenience and care partner engagement, participants expressed concerns about clinical effectiveness and limitations of virtual physical examinations and potentially widening disparities in access. Many participants shared concerns about harms to the patient-clinician relationship, limited ability to comfort patients in virtual settings, and reduced patient trust.Conclusions and relevanceOlder patients, care partners, and kidney clinicians (ie, nephrologists and physician assistants) shared divergent views of patient-centered telehealth care, especially its clinical effectiveness, patient experience, access to care, and clinician-patient relationship. Understanding older patients' and kidney clinicians' perceptions of telehealth elucidate barriers that should be addressed to promote high-quality care and telehealth use.

Dataset Information

Advance Care Planning Among Older Adults With Advanced Non-Dialysis-Dependent CKD and Their Care Partners: Perceptions Versus Reality?

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Advance Care Planning Among Older Adults With Advanced Non-Dialysis-Dependent CKD and Their Care Partners: Perceptions Versus Reality?

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