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Racial Differences in Outcomes of an Advance Care Planning Intervention for Dialysis Patients and Their Surrogates.

ABSTRACT: African Americans' beliefs about end-of-life care may differ from those of whites, but racial differences in advance care planning (ACP) outcomes are unknown.The aim of this study was to compare the efficacy of an ACP intervention on preparation for end-of-life decision making and post-bereavement outcomes for African Americans and whites on dialysis.A secondary analysis of data from a randomized trial comparing an ACP intervention (Sharing Patient's Illness Representations to Increase Trust [SPIRIT]) with usual care was conducted. There were 420 participants, 210 patient-surrogate dyads (67.4% African Americans), recruited from 20 dialysis centers in North Carolina. The outcomes of preparation for end-of-life decision making included dyad congruence on goals of care, surrogate decision-making confidence, a composite of the two, and patient decisional conflict assessed at 2, 6, and 12 months post-intervention. Surrogate bereavement outcomes included anxiety, depression, and post-traumatic distress symptoms assessed at 2 weeks, and at 3 and 6 months after the patient's death.SPIRIT was superior to usual care in improving dyad congruence (odds ration [OR]?=?2.31, p?=?0.018), surrogate decision-making confidence (??=?0.18, p?=?0.021), and the composite (OR?=?2.19, p?=?0.028) 2 months post-intervention, but only for African Americans. SPIRIT reduced patient decisional conflict at 6 months for whites and at 12 months for African Americans. Finally, SPIRIT was superior to usual care in reducing surrogates' bereavement depressive symptoms for African Americans but not for whites (??=?-3.49, p?=?0.003).SPIRIT was effective in improving preparation for end-of-life decision-making and post-bereavement outcomes in African Americans.

SUBMITTER: Song MK

PROVIDER: S-EPMC4753624 | biostudies-literature | 2016 Feb

REPOSITORIES: biostudies-literature

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Racial Differences in Outcomes of an Advance Care Planning Intervention for Dialysis Patients and Their Surrogates.

Song Mi-Kyung MK Ward Sandra E SE Lin Feng-Chang FC Hamilton Jill B JB Hanson Laura C LC Hladik Gerald A GA Fine Jason P JP

Journal of palliative medicine 20160201 2

<h4>Background</h4>African Americans' beliefs about end-of-life care may differ from those of whites, but racial differences in advance care planning (ACP) outcomes are unknown.<h4>Objective</h4>The aim of this study was to compare the efficacy of an ACP intervention on preparation for end-of-life decision making and post-bereavement outcomes for African Americans and whites on dialysis.<h4>Method</h4>A secondary analysis of data from a randomized trial comparing an ACP intervention (Sharing Pat ...[more]

PMID: 26840848

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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:Advance Care Planning (ACP) is the repeated communication and decision-making process between the patient, family, and healthcare professionals. This study describes an ACP intervention in nursing homes and evaluates the outcomes of the implementation process.The ACP intervention was part of a 4-month complex, cluster randomized controlled trial (COSMOS). 37 Norwegian nursing homes with 72 units (1 cluster?=?1 unit) and 765 patients were invited to participate and eligible units were randomised to the intervention group or control. Nursing home staff in the intervention group was offered a standardized education programme to learn early and repeated communication with patients and families and to implement ACP in their units. We used a train-the-trainer approach to educate staff in the units, supported by regular telephone calls and a midway seminar after two months. Individual patient logs consisting of different communication deliverables were used to evaluate the implementation process. Supported by Qualitative Content Analyses, we identified facilitators and barriers of the ACP implementation based on feedback during midway seminars and individual patient logs.The ACP intervention was conducted in 36 NH units (n?=?297); 105 healthcare providers participated at the education seminar prior to the study, and 3-4 employees from each unit participated in the midway seminar. NH staff reported the educational material relevant for the implementation strategy. The patient logs showed that ACP was successfully implemented in 62% (n?=?183) of the patients using our predefined implementation criteria. The staff emphasized the clear communication of the relevance of ACP addressed to leaders and staff as important facilitators, along with the clearly defined routines, roles and responsibilities. Identified barriers included lack of competence, perceived lack of time, and conflicting culture and staff opinions.Monthly communication with the family was the most frequently conducted communication, and the predefined criteria of successfully implemented ACP were largely achieved. Nursing home routines and engagement of leaders and staff were crucial facilitators, whereas lack of time and competence reduced the implementation success.The COSMOS-trial was registered in the ClinicalTrials.gov ( NCT02238652 ) July 7th, 2014.

Project description:Background and objectivesData on racial disparities in home dialysis utilization and outcomes are lacking in Canada, where health care is universally available.Design, setting, participants, & measurementsWe studied patients starting maintenance dialysis between 1996 and 2012 in the Canadian Organ Replacement Register, stratified by race: white, Asian, black, Aboriginal, Indian subcontinent, and other. The association between race and treatment with home dialysis was examined using generalized linear models. Secondary outcomes assessed racial differences in all-cause mortality and technique failure using a Fine and Gray competing risk model.Results66,600 patients initiated chronic dialysis between 1996 and 2012. Compared with whites (n=46,092), treatment with home dialysis was lower among Aboriginals (n=3866; adjusted relative risk, RR, 0.71; 95% confidence interval, CI, 0.66 to 0.76) and higher in Asians (n=4157; adjusted RR, 1.28; 95% CI, 1.22 to 1.35) and others (n=2170; adjusted RR, 1.12; 95% CI, 1.04 to 1.20) but similar in blacks (n=2143) and subcontinent Indians (n=2809). Black (adjusted hazard ratio, HR, 1.31; 95% CI, 1.16 to 1.48) and Aboriginal (adjusted HR, 1.19; 95% CI, 1.06 to 1.33) patients treated with peritoneal dialysis had a significantly higher adjusted risk of technique failure compared with whites, whereas Asians had a lower risk (adjusted HR, 0.89; 95% CI, 0.82 to 0.99). In patients on peritoneal dialysis, the risk of death was significantly lower in Asians (adjusted HR, 0.83; 95% CI, 0.75 to 0.92), blacks (adjusted HR, 0.71; 95% CI, 0.59 to 0.85), and others (adjusted HR, 0.79; 95% CI, 0.68 to 0.92) but higher in Aboriginals (adjusted HR, 1.16; 95% CI, 1.02 to 1.32) compared with whites. Among patients on home hemodialysis, no significant racial differences in patient and technique survival were observed, which may be limited by the low number of events among each subgroups.ConclusionsWith the exception of Aboriginals, all racial minority groups in Canada were as likely to be treated with home dialysis compared with whites. However, significant racial differences exist in outcomes.

Project description:BackgroundThe increase in the number of pediatric patients with complex health conditions necessitates the application of advance care planning for children. Earlier, withdrawal of life-sustaining treatment was taboo in the medical society in South Korea due to the history of such practice being punishable by law, and physicians tended to pursue aggressive treatment. With changes in public opinion on end-of-life care, the Korean government enacted a new law that protect human dignity by respecting patients' self-determination and facilitating advance care planning. However, little is known about current state of advance care planning for pediatric patients. The study aimed to assess perceptions regarding advance care planning among South Korean pediatricians and clarify any differences in perception among pediatric subspecialties.MethodsThis study was an observational cross-sectional survey that used a web-based self-report questionnaire. Participants comprised of pediatricians currently caring for children with life-limiting conditions in 2018.ResultsOf the 96 respondents, 89 were included in the analysis. In a hypothetical patient scenario, more hemato-oncologists and intensivists than neonatologists and neurologists preferred to provide comfort care than aggressive treatment. While 72.2% of hemato-oncologists reported that they usually or always discuss advance care plans with parents during treatment, more than half of other pediatricians reported that they seldom do so. Furthermore, 65% of respondents said that they never discuss advance care planning with adolescent patients. Moreover, there were no notable differences among subspecialties. The most prevalent answers to factors impeding advance care planning were lack of systemic support after performing advance care planning (82.0%) and uncertain legal responsibilities (70.8%).ConclusionsThe pediatricians differed in their experiences and attitudes toward advance care planning based on their subspecialty. Consequently, institutional support and education should be provided to physicians so that they can include children and families in discussions on prognosis.

Project description:OBJECTIVES:Advance 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. DESIGN:Cross-sectional study of NHs in PROVEN. SETTING AND PARTICIPANTS:119 NHs randomized to receive the ACP video intervention. MEASUREMENTS:The 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. RESULTS:Offer 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/IMPLICATIONS:Lower-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.

Dataset Information

Racial Differences in Outcomes of an Advance Care Planning Intervention for Dialysis Patients and Their Surrogates.

Publications

Racial Differences in Outcomes of an Advance Care Planning Intervention for Dialysis Patients and Their Surrogates.

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