Racial Differences in Outcomes of an Advance Care Planning Intervention for Dialysis Patients and Their Surrogates.
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SUBMITTER: Song MK
PROVIDER: S-EPMC4753624 | biostudies-literature | 2016 Feb
REPOSITORIES: biostudies-literature
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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.
| S-EPMC9286956 | biostudies-literature
Project description:ObjectivesA key objective of advance care planning (ACP) is improving surrogates' knowledge of patients' treatment goals. Little is known about whether ACP outside of a trial accomplishes this. The objective was to examine patient and surrogate reports of ACP engagement and associations with surrogate knowledge of goals.DesignCohort study SETTING: Primary care in a Veterans Affairs Medical Center.Participants350 community-dwelling veterans age ≥55 years and the individual they would choose to make medical decisions on their behalf, interviewed separately.MeasurementsTreatment goals were assessed by veterans' ratings of 3 health states: severe physical disability, cognitive disability, and pain, as an acceptable or unacceptable result of treatment for severe illness. Surrogates had knowledge if they correctly predicted all 3 responses. Veterans and surrogates were asked about living will and health care proxy completion and communication about life-sustaining treatment and quality versus quantity of life (QOL).ResultsOver 40% of dyads agreed that the veteran had not completed a living will or health care proxy and that there was no QOL communication. For each activity, sizeable proportions (18-34%) disagreed about participation. In dyads who agreed QOL communication had occurred, 30% of surrogates had knowledge, compared to 21% in dyads who agreed communication had not occurred and 15% in dyads who disagreed (P = .01). This relationship persisted in multivariable analysis. Agreement about other ACP activities was not associated with knowledge.ConclusionDisagreement about ACP participation was common. Agreement about communication regarding QOL was modestly associated with surrogate knowledge of treatment goals. Eliciting surrogates' perspectives is critical to ACP. Even dyads who agree about participation may need additional support for successful engagement.
| S-EPMC5555783 | biostudies-literature
Project description:Few trials have examined long-term outcomes of advance care planning (ACP) interventions. We examined the efficacy of an ACP intervention on preparation for end-of-life decision making for dialysis patients and surrogates and for surrogates' bereavement outcomes.A randomized trial compared an ACP intervention (Sharing Patient's Illness Representations to Increase Trust [SPIRIT]) to usual care alone, with blinded outcome assessments.420 participants (210 dyads of prevalent dialysis patients and their surrogates) from 20 dialysis centers.Every dyad received usual care. Those randomly assigned to SPIRIT had an in-depth ACP discussion at the center and a follow-up session at home 2 weeks later.preparation for end-of-life decision making, assessed for 12 months, included dyad congruence on goals of care at end of life, patient decisional conflict, surrogate decision-making confidence, and a composite of congruence and surrogate decision-making confidence.bereavement outcomes, assessed for 6 months, included anxiety, depression, and posttraumatic distress symptoms completed by surrogates after patient death.adjusting for time and baseline values, dyad congruence (OR, 1.89; 95% CI, 1.1-3.3), surrogate decision-making confidence (?=0.13; 95% CI, 0.01-0.24), and the composite (OR, 1.82; 95% CI, 1.0-3.2) were better in SPIRIT than controls, but patient decisional conflict did not differ between groups (?=-0.01; 95% CI, -0.12 to 0.10).45 patients died during the study. Surrogates in SPIRIT had less anxiety (?=-1.13; 95% CI, -2.23 to -0.03), depression (?=-2.54; 95% CI, -4.34 to -0.74), and posttraumatic distress (?=-5.75; 95% CI, -10.9 to -0.64) than controls.Study was conducted in a single US region.SPIRIT was associated with improvements in dyad preparation for end-of-life decision making and surrogate bereavement outcomes.
| S-EPMC5972830 | biostudies-literature
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.
| S-EPMC4348687 | biostudies-literature
Project description:BackgroundThe goal of advance care planning (ACP) is to improve end-of-life decision-making for patients and their spokespersons, but multiple studies have failed to show substantial or consistent benefit from ACP. Understanding how and why ACP under-performs in the setting of complex medical decision-making is key to optimizing current, or designing new, ACP interventions.AimTo explore how ACP did or did not contribute to a spokespersons' understanding of patient wishes after engaging in ACP.DesignThematic analysis of 200 purposively sampled interviews from a randomized control trial of an ACP decision aid.Setting/participants200 dyads consisting of patients 18 years or older with advanced serious illness and their spokesperson at 2 tertiary care centers in Hershey, PA and Boston, MA. Participants were interviewed 1 month after completing ACP.ResultsACP helped participants: 1) express clear end-of-life wishes, 2) clarify values, and 3) recognize challenges associated with applying those wishes in complex situations. Shortcomings of ACP included 1) unknown prognostic information or quality-of-life outcomes to inform decision-making, 2) skepticism about patients' wishes, and 3) complicated emotions impacting end-of-life discussions.ConclusionsHelping patients and their spokespersons better anticipate decision-making in the face of prognostic and informational uncertainty as well as the emotional complexities of making medical decisions may improve the efficacy of ACP interventions.
| S-EPMC9255430 | biostudies-literature
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.
| S-EPMC5785831 | biostudies-literature
Project description:ImportanceEvidence of effectiveness of advance care planning (ACP) strategies for patients receiving dialysis and their families is needed.ObjectivesTo test the effectiveness of an ACP intervention to prepare patients and their surrogates for end-of-life (EOL) decision-making and to improve surrogate bereavement outcomes.Design, setting, and participantsThis cluster randomized clinical trial, An Effectiveness-Implementation Trial of SPIRIT (Sharing Patients' Illness Representations to Increase Trust) in ESRD, was conducted from December 2017 to March 2023 and included 42 dialysis clinics in 5 US states (Georgia, New Mexico, North Carolina, Pennsylvania, and Virginia) randomized to provide intervention or usual care. Recruitment was from February 15, 2018, to January 31, 2022, and patient-surrogate dyads were followed up for 21 months (until January 17, 2023) or until patient death.InterventionEach clinic selected 1 or 2 health care workers (eg, nurse practitioner, registered nurse, or social worker) to conduct 45- to 60-minute ACP discussions with dyads in the clinic or remotely. After March 13, 2020 (commencement of the COVID-19 emergency declaration), all discussions were conducted remotely. An ACP summary was placed in patients' medical records.Main outcomes and measuresThe primary, 2-week preparedness outcomes were dyad congruence on EOL goals of care, patient decisional conflict, surrogate decision-making confidence, and a composite of dyad congruence and surrogate decision-making confidence. Secondary bereavement outcomes were anxiety, depression, and posttraumatic distress 3 months after patient death. To adjust for COVID-19 pandemic effects on bereavement outcomes, a variable to indicate the timing of baseline and 3-month assessment relative to the COVID-19 emergency declaration was created.ResultsOf the 426 dyads enrolled, 231 were in the intervention clinics, and 195 were in the control clinics. Among all dyads, the mean (SD) patient age was 61.9 (12.7) years, and the mean (SD) surrogate age was 53.7 (15.4) years. At 2 weeks, after adjusting for baseline values, dyad congruence (odds ratio [OR], 1.61; 95% CI, 1.12-2.31; P = .001), decisional conflict scores (β, -0.10; 95% CI, -0.13 to -0.07; P < .001), and the composite (OR, 1.57; 95% CI, 1.06-2.34; P = .03) were higher in the intervention group than in the control group. Surrogate decision-making confidence was similar between groups (β, 0.06; 95% CI, -0.01 to 0.13; P = .12). Among 77 bereaved surrogates, after adjusting for baseline values and assessment timing, intervention group anxiety was lower than control group anxiety (β, -1.55; 95% CI, -3.08 to -0.01; P = .05); however, depression (β, -0.18; 95% CI, -2.09 to 1.73; P = .84) and posttraumatic distress (β, -0.96; 95% CI, -7.39 to 5.46; P = .75) were similar.Conclusions and relevanceIn this randomized clinical trial, the ACP intervention implemented by health care workers at dialysis centers improved preparation for EOL decision-making but showed mixed effectiveness on bereavement outcomes. The ACP intervention implemented in dialysis centers may be an effective strategy to the dyad preparation for end-of-life care as opposed to the current focus on advance directives.Trial registrationClinicalTrials.gov Identifier: NCT03138564.
| S-EPMC10828909 | biostudies-literature
Project description:Background/objectivesTo assess whether an advance care planning (ACP) video intervention impacts care among short-stay nursing home (NH) patients.DesignPRagmatic trial of Video Education in Nursing Homes (PROVEN) was a pragmatic cluster randomized clinical trial.SettingA total of 360 NHs (N = 119 intervention, N = 241 control) owned by two healthcare systems.ParticipantsA total of 2,538 and 5,290 short-stay patients with advanced dementia or cardiopulmonary disease (advanced illness) in the intervention and control arms, respectively; 23,302 and 50,815 short-stay patients without advanced illness in the intervention and control arms, respectively.InterventionFive ACP videos were available on tablets or online. Designated champions at each intervention facility were instructed to offer a video to patients (or proxies) on admission. Control facilities used usual ACP practices.MeasurementsFollow-up time was at most 100 days for each patient. Outcomes included hospital transfers per 1000 person-days alive and the proportion of patients experiencing more than one hospital transfer, more than one burdensome treatment (tube-feeding, parenteral therapy, invasive mechanical intervention, and intensive care unit admission), and hospice enrollment. Champions recorded whether a video was offered in the patients' electronic medical record.ResultsThere was no significant reduction in hospital transfers per 1000 person-days alive in the intervention versus control groups with advanced illness (rate (95% confidence interval (CI)), 12.3 (11.6-13.1) vs 13.2 (12.5-13.7); rate difference: -0.8; 95% CI = -1.8-0.2)). There was a nonsignificant reduction in hospital transfers per 1000 person-days alive in the intervention versus control among short-stay patients without advanced illness. Secondary outcomes did not differ between groups among patients with and without advanced illness. Based on champion only reports 14.2% and 15.3% of eligible short-stay patients with and without advanced illness were shown videos, respectively.ConclusionAn ACP video program did not significantly reduce hospital transfers, burdensome treatment, or hospice enrollment among short-stay NH patients; however, fidelity to the intervention was low.
| S-EPMC7969401 | biostudies-literature
Project description:Adults who complete an advance directive (AD) are not consistently offered information about the risks, benefits, or alternatives (RBA) of the life-sustaining medical procedures addressed on standardized forms. The current article describes a new patient-centered nurse-supported advance care planning (NSACP) intervention focused on providing information about RBA of life-sustaining procedures. Fifty participants (mean age = 50.26 years) at a Veterans Affairs medical center were randomized to the NSACP intervention or a comparison condition. Before randomization, 78% (n = 39) expressed interest in RBA information. Of participants in the NSACP group, 94% (n = 30) completed an AD. Participants who received NSACP made more decisions to decline life-sustaining treatment than those who were randomized to the comparison group. Promising feasibility data include brevity (mean = 46 minutes), high patient satisfaction, participant retention, and treatment fidelity. The NSACP holds promise as a brief, educational intervention to support patients in completing an AD. [Journal of Gerontological Nursing, 44(7), 31-42.].
| S-EPMC10364459 | biostudies-literature
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.
| S-EPMC5672971 | biostudies-literature