COMMON BARRIERS AND FACILITATORS ACROSS DIVERSE DOMAINS OF AGE-RELATED PLANNING

Abstract Advance care planning (ACP) – plans that express wishes for healthcare for when a person is unable to communicate – is often studied independently of other age-related planning activities. This study explored a broad set of age-related planning activities, such as retirement, finances, aging in place, and healthcare, including ACP. We used directed content analysis to identify barriers and facilitators to age-related planning from semi-structured interviews with 38 respondents (ages 55-74). Surprisingly, a common set of structural, interpersonal, and individual barriers and facilitators emerged across domains. Barriers included competing demands, resistance from family members, and aversion to planning in general. Facilitators included exposure to planning behaviors through professional and social networks, having witnessed negative outcomes from others’ failure to plan, and a belief that planning would spare others future distress. These results reinforce the idea that ACP exists within of a set of age-related planning behaviors that share common characteristics.

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Barriers and Facilitators to Advance Care Panning Among Veterans Aging With HIV

Innovation in Aging ◽

10.1093/geroni/igab046.1638 ◽

2021 ◽

Vol 5 (Supplement_1) ◽

pp. 424-424

Author(s):

Sean Halpin ◽

Vincent Marconi ◽

Amy Justice ◽

Theodore Johnson ◽

D Keith McInnes ◽

...

Keyword(s):

Cohort Study ◽

Thematic Analysis ◽

Social Ties ◽

Medical Center ◽

Barriers And Facilitators ◽

Care Planning ◽

Structured Interviews ◽

Healthcare Experiences ◽

Advance Care ◽

Living With Hiv

Abstract Advance care planning (ACP) and hospice services are underutilized by patients living with HIV (PWH). Little is known about how older PWH approach ACP; the purpose of this qualitative study was to understand barriers and facilitators to ACP within the context of the patient-clinician relationship. Data are from a larger multimethod study designed to understand social determinants of health (SDH) that shape the lives and healthcare experiences of veterans aging with HIV. The sample includes 25 veterans from the Veterans Aging Cohort Study (VACS) recruited from an urban VA medical center. Semi-structured interviews were performed and analyzed using thematic analysis. Less than half of participants reported engaging in ACP. Key barriers to ACP include: fragile social ties, distrust of the healthcare system, and fear of disclosure and discrimination. We offer several recommendations for clinicians to engage in these conversations successfully and highlight the importance of considering SDH when designing interventions.

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“Don’t talk to them about goals of care”: Understanding disparities in advance care planning

The Journals of Gerontology Series A ◽

10.1093/gerona/glab091 ◽

2021 ◽

Author(s):

Deepshikha Charan Ashana ◽

Noah D’Arcangelo ◽

Priscilla K Gazarian ◽

Avni Gupta ◽

Stephen Perez ◽

...

Keyword(s):

Native American ◽

Ethnic Groups ◽

Health Systems ◽

Advance Care Planning ◽

Religious Beliefs ◽

Barriers And Facilitators ◽

National Study ◽

Care Planning ◽

Patient Centered ◽

Advance Care

Abstract Background Structurally marginalized groups experience disproportionately low rates of advance care planning (ACP). To improve equitable patient-centered end-of-life care, we examine barriers and facilitators to ACP among clinicians as they are central participants in these discussions. Methods In this national study, we conducted semi-structured interviews with purposively selected clinicians from six diverse health systems between August 2018 and June 2019. Thematic analysis yielded themes characterizing clinicians’ perceptions of barriers and facilitators to ACP among patients, and patient-centered ways of overcoming them. Results Among 74 participants, 49 (66.2%) were physicians, 16.2% were nurses, and 13.5% were social workers. Most worked in primary care (35.1%), geriatrics (21.1%), and palliative care (19.3%) settings. Clinicians most frequently expressed difficulty discussing ACP with certain racial and ethnic groups (African American, Hispanic, Asian, and Native American) (31.1%), non-native English speakers (24.3%), and those with certain religious beliefs (Catholic, Orthodox Jewish, and Muslim) (13.5%). Clinicians were more likely to attribute barriers to ACP completion to patients (62.2%), than to clinicians (35.1%) or health systems (37.8%). Three themes characterized clinicians’ difficulty approaching ACP (Preconceived views of patients’ preferences; narrow definitions of successful ACP; lacking institutional resources), while the final theme illustrated facilitators to ACP (Acknowledging bias and rejecting stereotypes; mission-driven focus on ACP; acceptance of all preferences). Conclusions Most clinicians avoided ACP with certain racial and ethnic groups, those with limited English fluency, and persons with certain religious beliefs. Our findings provide evidence to support development of clinician-level and institutional-level interventions and to reduce disparities in ACP.

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Barriers and facilitators to implementing a pragmatic trial to improve advance care planning in the nursing home setting

BMC Health Services Research ◽

10.1186/s12913-019-4309-5 ◽

2019 ◽

Vol 19 (1) ◽

Cited By ~ 1

Author(s):

Jennifer A. Palmer ◽

Victoria A. Parker ◽

Vincent Mor ◽

Angelo E. Volandes ◽

Lacey R. Barre ◽

...

Keyword(s):

Nursing Home ◽

Advance Care Planning ◽

Pragmatic Trial ◽

Barriers And Facilitators ◽

Care Planning ◽

Home Setting ◽

Nursing Home Setting ◽

Advance Care

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Identifying barriers and facilitators to implementing advance care planning in prisons: a rapid literature review

Health & Justice ◽

10.1186/s40352-020-00123-5 ◽

2020 ◽

Vol 8 (1) ◽

Author(s):

Ashley Macleod ◽

Divya Nair ◽

Ekin Ilbahar ◽

Marcus Sellars ◽

Linda Nolte

Keyword(s):

Advance Care Planning ◽

The United States ◽

Barriers And Facilitators ◽

System Level ◽

Ageing Population ◽

Care Planning ◽

Limited Information ◽

Correctional Setting ◽

Academic Literature ◽

Advance Care

Abstract Background Limited information is available describing advance care planning (ACP) within correctional facilities, despite its increasing relevance due to the ageing population in prisons and the high rates of complex medical comorbidities. In Western countries, self-determination with respect to making future medical decisions is a human right that prisoners do not lose when they are remanded into custody. ACP enables individuals to plan for their health and personal care so their values, beliefs and preferences are made known to inform future decision-making, for a time when they can no longer communicate their decisions. This paper examines the limited academic literature relating to ACP within prisons to identify barriers and facilitators that influence the uptake of ACP and advance care directive (ACD) documentation. Common themes related to ACP in a correctional setting were extracted and synthesised to produce a high-level analysis of barriers and facilitators influencing ACP uptake for prisoners within a correctional setting. Results Six articles met the selection criteria and reported on the experience of ACP and ACDs in prisons; five from the United States of America and one from Switzerland. Three dominant themes were identified, with related subthemes: system-level factors, attitudes and perceptions, and ACP knowledge and comprehension. Barriers to ACP and ACD implementation were more prominent in articles than facilitators. Conclusions Limited academic literature regarding the implementation and experience of ACP in prisons is available. The dominance of barriers identified in studies highlights key challenges for improving ACP uptake in correctional settings. Further research is required to understand the barriers, enablers, and attitudes to ACP in prisons.

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Limited engagement in, yet clear preferences for advance care planning in young-onset dementia: An exploratory interview-study with family caregivers

Palliative Medicine ◽

10.1177/0269216319864777 ◽

2019 ◽

Vol 33 (9) ◽

pp. 1166-1175 ◽

Cited By ~ 2

Author(s):

Romy Van Rickstal ◽

Aline De Vleminck ◽

Melissa D Aldridge ◽

Sean R Morrison ◽

Raymond T Koopmans ◽

...

Keyword(s):

Family Caregivers ◽

Advance Care Planning ◽

Quality Care ◽

Third Party ◽

Care Planning ◽

Structured Interviews ◽

Young Onset ◽

People With Dementia ◽

Advance Care ◽

Young Onset Dementia

Background: The significance of advance care planning in dementia is widely acknowledged. Despite the suggestion that younger people with dementia and their family might have distinct needs and preferences in this area, studies on advance care planning in young-onset dementia are absent. Aim: We aim to explore (1) whether family caregivers had already engaged in advance care planning with patients and/ or professionals and the accompanying reasons and (2) family caregivers’ preferences for how to ideally engage in the process with patients, family and professionals. Design: A qualitative study was conducted: we analysed semi-structured interviews ( n = 15) through the method of constant comparative analysis. Setting/participants: We included Flemish family caregivers of persons with young-onset dementia. Results: Plans for the future typically concerned non-medical affairs. Participants’ limited engagement in advance care planning was clarified through several reasons: not considering it useful, hindering patient behaviour, adopting a day-to-day attitude, caregivers emotionally protecting themselves and uncertainty about patients’ cognitive competence. However, endorsement for advance care planning showed from respondents’ preferences that it should be initiated timely, by a third party, and emphasize patients’ remaining capacities. Finally, the need for information and high-quality care emerged. Conclusion: A gap of knowledge, of information and in care intertwiningly hinder advance care planning. In young-onset dementia, engaging in advance care planning is not an option equally accessible as not doing so. Policy makers, institutions and professionals could reflect on their responsibility in providing these patients and caregivers an actual choice to engage in advance care planning or not.

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“My Family Wants Something Different”: Discordance in Perceived Personal and Family Treatment Preference and Its Association With Do-Not-Resuscitate Order Placement

Journal of Oncology Practice ◽

10.1200/jop.19.00250 ◽

2019 ◽

Vol 15 (11) ◽

pp. e942-e947

Author(s):

William Breitbart ◽

Holly G. Prigerson

Keyword(s):

Advance Care Planning ◽

Life Extension ◽

Treatment Preference ◽

Family Treatment ◽

Treatment Preferences ◽

Care Planning ◽

Do Not Resuscitate ◽

Structured Interviews ◽

Comfort Care ◽

Advance Care

PURPOSE: Patients make treatment decisions based not only on what they want, but what they think their families want. Discordance in such perceived preferences may therefore pose challenges for advance care planning. This study examines discordance in preference for life-extending care versus comfort-focused care and its association with do-not-resuscitate (DNR) order placement. METHODS: One hundred eighty-nine patients with advanced cancers refractory to at least one chemotherapy regimen were enrolled in a multisite observational study. In structured interviews, patients reported their preference for treatment maximizing either life extension or comfort; patients also indicated their perception of their families’ preference. DNR placement was reported by patients and verified using medical records. RESULTS: Approximately 23% of patients (n = 43) perceived discordance between their preference and their families’ preference. Patients who perceived discordance were less likely to have completed a DNR compared with those who perceived concordance, even after controlling for relevant confounds (odds ratio = .35; P = .02). Subgroups of discordance and concordance showed varying DNR placement rates (χ2, 19.95; P < .001). DNR placement rate was lowest among discordant subgroups, where there was either a personal (26.7%; four of 15) or family preference for comfort care (28.6%; eight of 28), followed by patients who perceived concordance for wanting life-extending care (34.5%; 29 of 84) and by patients who perceived concordance in wanting comfort-focused care (66.1%; 41 of 62). CONCLUSION: Many patients may perceive discordance between personal and family treatment preferences, posing impediments to advance care planning. Such patients may benefit from additional decision support.

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Which moral barriers and facilitators do physicians encounter in advance care planning conversations about the end of life of persons with dementia? A meta-review of systematic reviews and primary studies

BMJ Open ◽

10.1136/bmjopen-2020-038528 ◽

2020 ◽

Vol 10 (11) ◽

pp. e038528

Author(s):

Angela JJM Keijzer-van Laarhoven ◽

Dorothea P Touwen ◽

Bram Tilburgs ◽

Madelon van Tilborg-den Boeft ◽

Claudia Pees ◽

...

Keyword(s):

End Of Life ◽

Family Caregivers ◽

Advance Care Planning ◽

Systematic Reviews ◽

Moral Dilemmas ◽

Barriers And Facilitators ◽

Care Planning ◽

People With Dementia ◽

Meta Review ◽

Advance Care

Importance and objectiveConducting advance care planning (ACP) conversations with people with dementia and their relatives contributes to providing care according to their preferences. In this review, we identify moral considerations which may hinder or facilitate physicians in conducting ACP in dementia.DesignFor this meta-review of systematic reviews and primary studies, we searched the PubMed, Web of Science and PsycINFO databases between 2005 and 30 August 2019. We included empirical studies concerning physicians’ moral barriers and facilitators of conversations about end-of-life preferences in dementia care. The protocol was registered at Prospero (CRD42019123308).Setting and participantsPhysicians and nurse practitioners providing medical care to people with dementia in long-term and primary care settings. We also include observations from patients or family caregivers witnessing physicians’ moral considerations.Main outcomesPhysicians’ moral considerations involving ethical dilemmas for ACP. We define moral considerations as the weighing by the professional caregiver of values and norms aimed at providing good care that promotes the fundamental interests of the people involved and which possibly ensues dilemmas.ResultsOf 1347 studies, we assessed 22 systematic reviews and 51 primary studies as full texts. We included 11 systematic reviews and 13 primary studies. Themes included: (1) beneficence and non-maleficence; (2) respecting dignity; (3) responsibility and ownership; (4) relationship and (5) courage. Moral dilemmas related to the physician as a professional and as a person. For most themes, there were considerations that either facilitated or hindered ACP, depending on physician’s interpretation or the context.ConclusionsPhysicians feel a responsibility to provide high-quality end-of-life care to patients with dementia. However, the moral dilemmas this may involve, can lead to avoidant behaviour concerning ACP. If these dilemmas are not recognised, discussed and taken into account, implementation of ACP as a process between physicians, persons with dementia and their family caregivers may fail.

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