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Assessment of Bereaved Caregiver Experiences of Advance Care Planning for Children With Medical Complexity.

ABSTRACT: Importance:Advance care planning (ACP) is the process of discussing values and preferences for care to help inform medical decision-making. Children with medical complexity (CMC) often have a shortened life span with an unpredictable clinical course and timing of death; however, there is a paucity of literature that describes the experience of ACP from the perspective of bereaved family caregivers of CMC. Objective:To explore the experiences of bereaved family caregivers with ACP for CMC. Design, Setting, and Participants:This qualitative study included 12 interviews with 13 bereaved family caregivers of CMC whose deaths had occurred in the 5 years before study commencement (2013-2018). Participants were recruited at a single tertiary care pediatric center; CMC were treated by the Complex Care or Long-term Ventilation clinic in Toronto, Ontario, Canada. Data were collected from July to October 2018. Thematic analysis with an inductive approach was used. Exposures:Qualitative interviews were conducted using purposive sampling of bereaved family caregivers using semistructured interviews that were recorded and transcribed. Interviews were conducted until saturation was reached. Main Outcomes and Measures:Transcripts were analyzed to create themes that characterized caregiver experiences with ACP. Results:A total of 13 family caregivers were interviewed in 12 interviews, all of whom were parents (12 [92%] women, 1 [8%] man) of a deceased child (aged 7 months to 12 years). Themes were divided in the 3 following categories, which align with the Donabedian model for health service quality: (1) structure of care, (2) ACP process, and (3) end-of-life experience. Notable subthemes for this population included the importance of accounting for parental expertise in the child's care, recurrent experiences with life-threatening events, relative shock of the timing of death, and the multiple losses that caregivers experienced. Conclusions and Relevance:In this study, parental experiences revealed that there are key aspects of the structure of the child's care, process around ACP, and end-of-life care experiences that provide important reflections on ACP that warrant future study.

SUBMITTER: Lord S

PROVIDER: S-EPMC7388020 | biostudies-literature | 2020 Jul

REPOSITORIES: biostudies-literature

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Assessment of Bereaved Caregiver Experiences of Advance Care Planning for Children With Medical Complexity.

Lord Sarah S Moore Clara C Beatty Madison M Cohen Eyal E Rapoport Adam A Hellmann Jonathan J Netten Kathy K Amin Reshma R Orkin Julia J

JAMA network open 20200701 7

<h4>Importance</h4>Advance care planning (ACP) is the process of discussing values and preferences for care to help inform medical decision-making. Children with medical complexity (CMC) often have a shortened life span with an unpredictable clinical course and timing of death; however, there is a paucity of literature that describes the experience of ACP from the perspective of bereaved family caregivers of CMC.<h4>Objective</h4>To explore the experiences of bereaved family caregivers with ACP ...[more]

PMID: 32721029

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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.

Project description:BackgroundAdvance care planning (ACP) is a process involving conversations about values and preferences regarding future care at the end-of-life. ACP has led to positive outcomes, both in relation to quality of life and with increased use of palliative care, less life-sustaining treatment and fewer hospital admissions. Sweden has yet to embrace the practice systematically, but scattered initiatives exist.AimTo study implementation of a routine for ACP in NH settings in Sweden by exploring healthcare professionals' experiences of engaging in ACP following this implementation.MethodsThe study followed a qualitative inductive design with convenience and snowball sampling. Semi-structured group and individual interviews with registered healthcare professionals were analysed using qualitative content analysis.FindingsOrganisational support for sustainable ACP implementation was found to be essential. This included sufficient training, facilitation, collaboration and uniform work routines across providers and professionals. Engaging in ACP conversations following the implemented routine was found to be a process of preparing, being, talking, deciding and sharing.ConclusionsSuccessful implementation of ACP in NHs requires a carefully planned implementation strategy. ACP in NHs tend to be medically focused at the expense of residents' psychosocial care-planning needs. Widespread uptake of ACP in Sweden could be useful in the national effort to adopt more person-centred care in Swedish healthcare.KEY POINTS While advance care planning has been implemented in many other countries, Sweden lacks a national strategy on advance care planning and Swedish healthcare settings have yet to systematically implement this practice. • This study is the first to report on professionals' experiences of engaging in sustainable advance care planning, following top-down implementation of the practice in one Swedish region. • Successful implementation of advance care planning in nursing homes requires a system-level approach, and shortcomings of the implementation process are highlighted.

Project description:Advance care planning (ACP) helps ensure that treatment preferences are met at the end of life. Medical professionals typically are responsible for facilitating patients' ACP, and may be especially effective in doing so if they have first-hand insights from their own planning. However, no large-scale U.S. studies examine whether persons working on the front lines of health care are more likely than other workers to have done ACP. We contrast the use of three ACP components (living wills, durable power of attorney for health care, and informal discussions) among persons working in medical, legal, social/health support services, other professional, and other non-professional occupations. Data are from the Health and Retirement Study (n = 7668) and Wisconsin Longitudinal Study (n = 5464). Multivariable logistic regression analyses are adjusted for socioeconomic, demographic, health, and psychosocial factors that may confound associations between occupational group and ACP. Medical professionals in both samples are more likely than other professional workers to discuss their own treatment preferences, net of all controls. Medical professionals in the WLS are more likely to execute living wills and DPAHC designations, whereas legal professionals in the HRS are more likely to name a DPAHC. Non-professional workers are significantly less likely to do all three types of planning, although these differences are accounted for by socioeconomic factors. Social and health services professionals are no more likely than other professionals to do ACP. The on-the-job experiences and expertise of medical professionals may motivate them to discuss their own end-of-life preferences, which may render them more trustworthy sources of information for patients and clients. The Affordable Care Act provides reimbursement for medical professionals' end-of-life consultations with Medicare beneficiary patients, yet practitioners uncomfortable with such conversations may fail to initiate them. Programs to increase medical professionals' own ACP may have the secondary benefit of increasing ACP among their patients.

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Assessment of Bereaved Caregiver Experiences of Advance Care Planning for Children With Medical Complexity.

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Assessment of Bereaved Caregiver Experiences of Advance Care Planning for Children With Medical Complexity.

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