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The importance of trust-based relations and a holistic approach in advance care planning with people with dementia in primary care: a qualitative study.

ABSTRACT: BACKGROUND:ACP enables individuals to define and discuss goals and preferences for future medical treatment and care with family and healthcare providers, and to record these goals and preferences if appropriate. Because general practitioners (GPs) often have long-lasting relationships with people with dementia, GPs seem most suited to initiate ACP. However, ACP with people with dementia in primary care is uncommon. Although several barriers and facilitators to ACP with people with dementia have already been identified in earlier research, evidence gaps still exist. We therefore aimed to further explore barriers and facilitators for ACP with community-dwelling people with dementia. METHODS:A qualitative design, involving all stakeholders in the care for community-dwelling people with dementia, was used. We conducted semi-structured interviews with community dwelling people with dementia and their family caregivers, semi structured interviews by telephone with GPs and a focus group meeting with practice nurses and case managers. Content analysis was used to define codes, categories and themes. RESULTS:Ten face to face interviews, 10 interviews by telephone and one focus group interview were conducted. From this data, three themes were derived: development of a trust-based relationship, characteristics of an ACP conversation and the primary care setting. ACP is facilitated by a therapeutic relationship between the person with dementia/family caregiver and the GP built on trust, preferably in the context of home visits. Addressing not only medical but also non-medical issues soon after the dementia diagnosis is given is an important facilitator during conversation. Key barriers were: the wish of some participants to postpone ACP until problems arise, GPs' time restraints, concerns about the documentation of ACP outcomes and concerns about the availability of these outcomes to other healthcare providers. CONCLUSIONS:ACP is facilitated by an open relationship based on trust between the GP, the person with dementia and his/her family caregiver, in which both medical and non-medical issues are addressed. GPs' availability and time restraints are barriers to ACP. Transferring ACP tasks to case managers or practice nurses may contribute to overcoming these barriers.

SUBMITTER: Tilburgs B

PROVIDER: S-EPMC6097199 | biostudies-literature | 2018 Aug

REPOSITORIES: biostudies-literature

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The importance of trust-based relations and a holistic approach in advance care planning with people with dementia in primary care: a qualitative study.

Tilburgs Bram B Vernooij-Dassen Myrra M Koopmans Raymond R Weidema Marije M Perry Marieke M Engels Yvonne Y

BMC geriatrics 20180816 1

<h4>Background</h4>ACP enables individuals to define and discuss goals and preferences for future medical treatment and care with family and healthcare providers, and to record these goals and preferences if appropriate. Because general practitioners (GPs) often have long-lasting relationships with people with dementia, GPs seem most suited to initiate ACP. However, ACP with people with dementia in primary care is uncommon. Although several barriers and facilitators to ACP with people with demen ...[more]

PMID: 30115008

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Project description:ImportanceAdvance care planning (ACP), in which patients or their surrogates discuss goals and preferences for care with physicians, attorneys, friends, and family, is an important approach to help align goals with actual treatment. ACP may be particularly valuable in patients with advanced serious illnesses such as Alzheimer's disease and related dementias (ADRDs) for whom surgery carries significant risks.ObjectiveTo determine the frequency, timing, and factors associated with ACP billing in Medicare beneficiaries with ADRD undergoing nontrauma inpatient surgery.DesignThis national cohort study analyzes Medicare fee-for-service claims data from 2016 to 2017. All patients had a 6-month lookback and follow-up period.SettingNational Medicare fee-for-service data.ParticipantsAll patients with ADRD, defined according to the Chronic Conditions Warehouse, undergoing inpatient surgery from July 1, 2016 to June 30, 2017.ExposuresPatient demographics, medical history, and procedural outcomes.Main outcomeACP billing codes from 6 months before to 6 months after admission for inpatient surgery.ResultsThis study included 289,428 patients with ADRD undergoing surgery, of whom 21,754 (7.5%) had billed ACP within the 6 months before and after surgical admission. In a multivariable analysis, patients of white race, male sex, and residence in the Southern and Midwestern United States were at the highest risk of not receiving ACP. Of all patients who received ACP, 5960 (27.4%) did so before surgery while 12,658 (52.8%) received ACP after surgery. Timing of ACP after surgery was associated with an Elixhauser comorbidity index of 3 or higher (1.23, p = 0.045) and major postoperative complication or death (odds ratio 1.52, p < 0.0001).Conclusions and relevanceOverall ACP billing code use is low among Medicare patients with ADRD undergoing surgery. Billed ACP appears to have a reactive pattern, occurring most commonly after surgery and in association with postoperative mortality and complications. Additional study is warranted to understand barriers to use.

Project description:BackgroundGeneral practitioners (GPs) are advised to offer advance care planning (ACP) to people with dementia (PWD). In a randomized controlled trial, an educational intervention for GPs aimed at initiating and optimizing ACP proved to be effective. During the intervention most GPs were accompanied by their practice nurse (PN). To provide insights into the intervention's successful components and what could be improved, we conducted a process evaluation and explored implementation, mechanisms of impact and contextual factors.MethodsWe used the Medical Research Council guidance for process evaluations. Implementation was explored identifying reach and acceptability. We performed descriptive analyses of participants' characteristics; selection, inclusion and intervention attendance; a GP post-intervention survey on initiating ACP; a post intervention focus group with trainers of the intervention. Mechanisms of impact were explored identifying adoption and appropriateness. We used: participants' intervention ratings; a GP post-intervention survey on conducting ACP; ACP documentation in PWD's medical files; post-intervention interviews with PWD/FC dyads. All data was used to identify contextual factors.ResultsThe intervention was implemented by a small percentage of the total Dutch GP population invited, who mostly included motivated PWD/FC dyads with relatively little burden, and PWD with limited cognitive decline. The mechanisms of impact for GPs were: interactively learning to initiate ACP with training actors with a heterogeneous group of GPs and PNs. For PWD/FCs dyads, discussing non-medical preferences was most essential regarding their SDM experience and QoL. Some dyads however found ACP stressful and not feasible. Younger female GPs more often initiated ACP. Male PWD and those with mild dementia more often had had ACP. These characteristics and the safe and intimate training setting, were important contextual facilitators.ConclusionWe recommend Interventions aimed at improving ACP initiation with PWD by GPs to include interactive components and discussion of non-medical preferences. A safe environment and a heterogeneous group of participants facilitates such interventions. However, in practice not all FC/PWD dyads will be ready to start. Therefore, it is necessary to check their willingness when ACP is offered.

Project description:ImportanceAdvance care planning (ACP) can promote patient-centered end-of-life (EOL) care and is intended to ensure that medical treatments are aligned with patient's values. Sexual and gender minority (SGM) people face greater discrimination in health care settings compared with heterosexual, cisgender people, but it is unknown whether such discrimination occurs in ACP and how it might affect the ACP experiences of SGM people.ObjectivesTo increase understanding of barriers and facilitators of ACP facing SGM individuals.Design, setting, and participantsThis mixed-methods national study of ACP included a telephone survey of self-identified SGM and non-SGM participants in a nationally representative sample drawn from a larger omnibus national panel by SSRS. Qualitative interviews were conducted with a subset of survey participants who identified as SGM. Data were collected from October 2020 to March 2021.ExposuresSelf-identified SGM.Main outcomes and measuresThe survey included 4 items from the validated ACP Engagement Survey, adapted to capture experiences of discrimination. Interviews asked about participants' experiences with ACP, including the appointment of medical decision-makers, sharing preferences, and experiences within the health care system more broadly.ResultsA total of 603 adults participated in the survey, with 201 SGM individuals (mean [SD] age, 45.7 [18.7] years; 101 [50.2%] female; 22 [10.9%] Black, 37 [18.4%] Hispanic, and 140 [69.7%] White individuals) and 402 non-SGM individuals (mean [SD] age, 53.7 [19.2] years; 199 [49.5%] female; 35 [8.7%] Black, 41 [10.2%] Hispanic, and 324 [80.6%] White individuals). Regarding reasons for not completing ACP, SGM respondents, compared with non-SGM respondents, were more likely to say "I don't see the need" (72 [73.5%] vs 131 [57.2%], P = .006) and "I feel discriminated against by others" (12 [12.2%] vs 6 [2.6%], P < .001). Of 25 completed interviews among SGM participants, 3 main themes were identified: how fear and experiences of discrimination affect selection of clinicians and whether to disclose SGM identity; concerns about whether EOL preferences and medical decision-makers would be supported; and a preference to discuss EOL decisions and values outside of clinical settings.Conclusions and relevanceThis study found that fear of disclosing sexual orientation or gender identity information and discrimination are important barriers to ACP for SGM in clinical settings, but discussions of preferences and values still occur between many SGM people and medical decision-makers. More SGM-specific patient-centered care might better support these discussions within the health care system. Furthermore, health systems can facilitate improved engagement by supporting clinician sensitivity training, including guidance on documentation and requirements.

Dataset Information

The importance of trust-based relations and a holistic approach in advance care planning with people with dementia in primary care: a qualitative study.

Publications

The importance of trust-based relations and a holistic approach in advance care planning with people with dementia in primary care: a qualitative study.

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