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Advance care planning with patients on hemodialysis: an implementation study.

ABSTRACT: 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.

SUBMITTER: Goff SL

PROVIDER: S-EPMC6659207 | biostudies-literature | 2019 Jul

REPOSITORIES: biostudies-literature

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Advance care planning with patients on hemodialysis: an implementation study.

Goff Sarah L SL Unruh Mark L ML Klingensmith Jamie J Eneanya Nwamaka D ND Garvey Casey C Germain Michael J MJ Cohen Lewis M LM

BMC palliative care 20190726 1

<h4>Background</h4>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.<h4>Methods</h4>The Consolidated Framework for Implementation Research (CFIR) was the organizing fr ...[more]

PMID: 31349844

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Project description:BackgroundPatients undergoing high-risk surgery are at a risk of sudden deterioration of their health. This study aimed to examine the feasibility of the development of two patient decision aids (PtDAs) to assist patients undergoing high-risk surgeries in informed decision-making about their medical care in a crisis.MethodsThis field testing implemented two PtDAs that met the international criteria developed by the researchers for patients before surgery. Study participants were patients scheduled to be admitted to the intensive care unit after surgery at one acute care hospital in Japan and their families. The study used a mixed-methods approach. The primary outcome was patients' decision satisfaction evaluated by the SURE test. Secondary outcomes were the perception of the need to discuss advance care planning (ACP) before surgery and mental health status. The families were also surveyed on their confidence in proxy decision-making (NRS: 0-10, quantitative data). In addition, interviews were conducted after discharge to assess the acceptability of PtDAs. Data were collected before (preoperative outpatients, baseline: T0) and after providing PtDAs (in the hospital: T1) and following discharge (T2, T3).ResultsNine patients were enrolled, of whom seven agreed to participate (including their families). The SURE test scores (mean ± SD) were 2.1 ± 1.2 (T0), 3.4 ± 0.8 (T2), and 3.9 ± 0.4 (T3). The need to discuss ACP before surgery was 8.7 ± 1.3 (T1) and 9.1 ± 0.9 (T2). The degree of confidence in family surrogate decision-making was 6.1 ± 2.5 (T0), 7.7 ± 1.4 (T1), and 8.1 ± 1.5 (T2). The patients reported that using PtDAs provided an opportunity to share their thoughts with their families and inspired them to start mapping their life plans. Additionally, patients wanted to share and discuss their decision-making process with medical professionals after the surgery.ConclusionsPtDAs supporting ACP in patients undergoing high-risk surgery were developed, evaluated, and accepted. However, they did not involve any discussion of patients' ACP treatment wishes with their families. Medical providers should be coached to provide adequate support to patients. In the future, larger studies evaluating the effectiveness of PtDAs are necessary.

Project description:Background and objectivesMore 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.Design, setting, participants, & measurementsIn-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.ResultsThirteen 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.ConclusionsMany 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:IntroductionPatients in intensive care units (ICUs) may transition into an end-of-life phase during treatment. Advance care planning (ACP) for this population has not been studied comprehensively, and support for its implementation is insufficient.ObjectiveThis study aims to clarify the ACP support needs among critical perioperative patients.MethodsIn this qualitative descriptive study, semistructured interviews were conducted with patients previously admitted to the ICU. The survey was conducted from September to November 2019. Participants comprised 13 individuals, who were admitted to the ICU for a period of 3 months to 2 years after surgery.ResultsThe average age of the participants was 63.8 years. The average mechanical ventilation duration following surgery was 24.5 h. The interviews focused on the ACP needs from the preoperative period to discharge. About 90% of the patients thought about the possibility of death before surgery and considered giving advance orders (e.g., "I don't want life-sustaining treatment"). The participants discussed inheritance, work-related matters, and household issues with their families but rarely spoke about treatment and care. Although they examined the content of the advance directives, the medical staff was not informed about them. Patients revealed that they wanted to understand the distinction between life-prolonging and life-saving treatments and discuss it with the medical staff, apart from being educated on ACP. Many patients previously admitted to the ICU are unclear about the difference between life-prolonging and life-saving treatments; this is also true for medical staff.ConclusionPatients who had been admitted to the ICU after high-risk surgery thought they needed help with ACP before surgery. Therefore, patients have the right to know about treatment risks; however, medical staff believes that this is difficult to communicate. Thus, medical staff should consider ways to communicate clearly with patients, including discussing the risks associated with surgery.

Project description:ObjectivesAdvance care planning (ACP) is important to ensure that nursing home (NH) residents receive care concordant with their goals. Video interventions have been developed to improve the process of ACP. Yet, little is known about which NH characteristics are associated with implementation of ACP video interventions in clinical practice. Our objective was to examine NH-level characteristics associated with the implementation of an ACP video intervention as part of the Pragmatic trial of Video Education in Nursing Homes (PROVEN) trial.DesignCross-sectional study of NHs in PROVEN.Setting and participants119 NHs randomized to receive the ACP video intervention.MeasurementsThe outcomes were the proportion of short- (<100 days) and long-stay (≥100 days) NH residents who were (1) offered to watch a video and (2) shown a video, aggregated to the NH-level, and measured using electronic forms of video offers. The association between outcomes and NH facility characteristics (eg, staffing, resident acuity) and participation in other aspects of the PROVEN trial (eg, monthly check-in calls) were estimated using multivariate linear regression models. NH characteristics were measured using data from Online Survey Certification and Reporting data, Long-term Care: Facts on Care in the US and NH Compare.ResultsOffer rates were 69% [standard deviation (SD): 28] for short-stay and 56% (SD: 20) for long-stay residents. Show rates were 19% (SD: 21) for short-stay and 17% (SD: 17) for long-stay residents. After adjusting for NH characteristics, compared to 1-star NHs, higher star-rated NHs had higher offer rates. Champions' participation in check-in calls was positively associated with both outcomes for long-stay residents.Conclusions/implicationsLower-quality NHs seem unable to integrate a novel ACP video education program into routine care processes. Ongoing support for and engagement with NH staff to champion the intervention throughout implementation is important for the success of a pragmatic trial within NHs.

Project description:BackgroundGeneral Practitioners (GPs) are central in the care of Dutch older people and in a good position to have Advance Care Planning (ACP) conversations. Interview studies reveal that the doctor-patient relationship is important when initiating ACP conversations and can also be influenced by ACP conversations. We aimed to examine the association between having an ACP conversation and the patient feeling the GP knows him or her and the patient trusting the GP and vice versa.MethodsImplementation of ACP in primary care was evaluated in a pre-and post design. Questionnaires before implementation of ACP and 14 months later were sent to patients aged 75 years or older within 10 GP-practices and 2 care homes. Multivariable logistic regression was used to model the relationship between ACP conversations during implementation and the patient-GP relationship before implementation. Odds ratios were adjusted for potential confounders. Generalized ordered logistic regression was used to model the relationship between the changes in patient-GP relationship before and after implementation and ACP conversations during implementation.ResultsFour hundred fifty-eight patients filled out the pre- and post-test questionnaire. There was no association between the GP knowing the patient and trust in the pre-test and having an ACP conversation during the implementation. For people who had had an ACP conversation at the end of the implementation period their trust remained more often the same or was higher after implementation (trust to provide good care OR 2.93; trust to follow their wishes OR 2.59), compared to patients who did not have an ACP conversation. A reduction in trust was less likely to happen to patients who had an ACP conversation compared to patients who did not have an ACP conversation.ConclusionsAlthough we have not found evidence for trust as a prerequisite for ACP conversations, this paper shows that ACP conversations can be beneficial for the doctor-patient relationship.

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Advance care planning with patients on hemodialysis: an implementation study.

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Advance care planning with patients on hemodialysis: an implementation study.

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