Engaging persons with dementia in advance care planning: Challenges and opportunities

Dementia ◽  
2020 ◽  
pp. 147130122097305
Author(s):  
Tamara Sussman ◽  
Rebecca Pimienta ◽  
April Hayward
Keyword(s):  
Focus Groups ◽  
Family Caregivers ◽  
Advance Care Planning ◽  
Service Providers ◽  
Care Planning ◽  
Reflective Process ◽  
Challenges And Opportunities ◽  
Future Care ◽  
Advance Care ◽  
Positive Engagement

This study reports findings from a series of focus groups with persons with dementia and family caregivers intended to explore: (1) perceptions of and experiences with advance care planning (ACP); (2) concerns related to future care including, but not limited to, end-of-life care; and (3) practices that may support positive engagement with ACP. A total of 18 participants including 10 persons with dementia and eight family caregivers participated in five focus groups held in two urban cities in Canada. All focus group deliberations were audio recorded, transcribed verbatim, and analyzed in five stages using a semantic thematic approach. All participants expressed some form of engagement in ACP, but understandings were limited and divergence was expressed regarding the timing of more expansive conversations about future care. Although some persons with dementia were ready to engage in future care discussions, most preferred focusing on the present and suggested their families did not require direction. This placed families in the complex dilemma of protecting their loved ones while compromising their own needs for dialogue. Although individually focused models of ACP engagement hold promise for those persons with dementia ready to engage in future planning, our findings suggest that early engagement of families in the reflective process may go a long way in supporting ACP activation. Our findings further suggest that persons with dementia who do not have close family/friends may require extensive ACP encouragement and support from service providers.

Advance care planning in hospitals

2018 ◽  
Author(s):  
Clare Marlow ◽  
Karen Groves ◽  
Premila Fade
Keyword(s):  
Advance Care Planning ◽  
Hospital Setting ◽  
Well Being ◽  
Family Satisfaction ◽  
Hospital Environment ◽  
Care Planning ◽  
Good Communication ◽  
Challenges And Opportunities ◽  
Future Care ◽  
Advance Care

This chapter outlines the challenges and opportunities surrounding advance care planning (ACP) within the hospital setting. Although the hospital environment may not seem the obvious place for future care planning, the triggers to these conversations may occur during a hospital admission. Around a third of all patients in general hospitals are likely to be in the last year of life and nearly 90% of people who die are hospitalized in the last year of life. ACP can help improve end-of-life care in hospital, with the potential to improve communication, increase quality of life and well-being of patients and those important to them, reduce use of futile and often unwanted treatments and unnecessary hospitalizations, and improve patient and family satisfaction with hospital care. Recognition that someone is in the last year of life, good communication skills, and a clear process for documentation and dissemination are key to successful ACP in hospitals.

scholarly journals FAMILY CAREGIVERS’ ADVANCE CARE PLANNING FOR COGNITIVELY IMPAIRED OLDER ADULTS: SERVICE PROVIDERS’ PERSPECTIVES

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S237-S237
Author(s):  
Hyunjin Noh ◽  
Temilade A Aladeokin
Keyword(s):  
Older Adults ◽  
End Of Life ◽  
Family Caregivers ◽  
Advance Care Planning ◽  
Service Providers ◽  
Cognitively Impaired ◽  
Care Planning ◽  
Barriers To Access ◽  
Advance Care ◽  
Surrogate Decision

Abstract An increasing number of family caregivers face challenges of advance care planning (ACP) for their cognitively impaired older adults. The purpose of this study was to understand service providers’ views of ACP knowledge and needs among such family caregivers. Purposive sampling was used to recruit 10 service providers who serve older adults and their family caregivers in community settings of West Alabama. Individual, face-to-face interviews were conducted guided by a semi-structured questionnaire, asking about their experiences with and views of family caregivers’ ACP for their older adults. Thematic analysis of the qualitative data revealed several findings: family caregivers’ lack of knowledge about ACP and end-of-life care, discomfort in end-of-life discussions, uncertainty about their older adult’s end-of-life preferences, frustration with the surrogate decision-making role, family conflicts in ACP process, and logistical barriers to access ACP resources. Tailored services should be developed to address these barriers to promote ACP among this population.

scholarly journals Advance Care Planning interventions for older people with early-stage dementia: A scoping review

2021 ◽  
pp. 205715852110140
Author(s):  
Annika Tetrault ◽  
Maj-Helen Nyback ◽  
Heli Vaartio-Rajalin ◽  
Lisbeth Fagerström
Keyword(s):  
Older People ◽  
Family Caregivers ◽  
Advance Care Planning ◽  
Early Stage ◽  
Care Planning ◽  
People With Dementia ◽  
Scoping Reviews ◽  
Future Care ◽  
Study Population ◽  
Advance Care

Advance Care Planning can be used to engage people with dementia in decision-making about future care. The current study aims to advance the state of knowledge about Advance Care Planning interventions aimed at older people with early-stage dementia and to describe the effects of various interventions as well as the feedback on the interventions from this patient group and their family caregivers. The study is reported in accordance with PRISMA for scoping reviews. The search for studies and reports included electronic databases, websites, books, and reference lists. Data from the selected studies, including publication year, title, purpose, study population, intervention, methods, and results, were extracted. Six full-text articles were identified as suitable for inclusion. The six interventions had differing approaches. A supportive structure was helpful for both people with dementia and family caregivers. The feeling of being listened to and engaged in the care planning seems to be of most importance, not the intervention design itself.

An introduction to advance care planning: practice at the frontline

2018 ◽  
Author(s):  
Anjali Mullick ◽  
Jonathan Martin
Keyword(s):  
Decision Making ◽  
Clinical Practice ◽  
Communication Skills ◽  
Advance Care Planning ◽  
Use Case ◽  
Care Planning ◽  
Practical Advice ◽  
Future Care ◽  
Case Vignettes ◽  
Advance Care

Advance care planning (ACP) is a process of formal decision-making that aims to help patients establish decisions about future care that take effect when they lose capacity. In our experience, guidance for clinicians rarely provides detailed practical advice on how it can be successfully carried out in a clinical setting. This may create a barrier to ACP discussions which might otherwise benefit patients, families and professionals. The focus of this paper is on sharing our experience of ACP as clinicians and offering practical tips on elements of ACP, such as triggers for conversations, communication skills, and highlighting the formal aspects that are potentially involved. We use case vignettes to better illustrate the application of ACP in clinical practice.

Advance care planning: the future

2020 ◽  
pp. bmjspcare-2020-002304
Author(s):  
Judith Rietjens ◽  
Ida Korfage ◽  
Mark Taubert
Keyword(s):  
Advance Care Planning ◽  
Public Awareness ◽  
Care Planning ◽  
Decisional Capacity ◽  
Best Interest ◽  
Awareness Campaigns ◽  
People With Dementia ◽  
Future Care ◽  
Advance Care ◽  
Improve Patient

ObjectivesThere is increased global focus on advance care planning (ACP) with attention from policymakers, more education programmes, laws and public awareness campaigns.MethodsWe provide a summary of the evidence about what ACP is, and how it should be conducted. We also address its barriers and facilitators and discuss current and future models of ACP, including a wider look at how to best integrate those who have diminished decisional capacity.ResultsDifferent models are analysed, including new work in Wales (future care planning which includes best interest decision-making for those without decisional capacity), Asia and in people with dementia.ConclusionsACP practices are evolving. While ACP is a joint responsibility of patients, relatives and healthcare professionals, more clarity on how to apply best ACP practices to include people with diminished capacity will further improve patient-centred care.

scholarly journals The Role of Advance Care Planning in Cancer Patient and Caregiver Grief Resolution: Helpful or Harmful?

Cancers ◽  
2021 ◽  
Vol 13 (8) ◽  
pp. 1977
Author(s):  
Francesca Falzarano ◽  
Holly G. Prigerson ◽  
Paul K. Maciejewski
Keyword(s):  
Cancer Patients ◽  
Family Caregivers ◽  
Advance Care Planning ◽  
Care Planning ◽  
Do Not Resuscitate ◽  
Prospective Longitudinal Study ◽  
Advance Care ◽  
Grief Resolution ◽  
Caregiver Grief ◽  
Prospective Longitudinal

Cancer patients and their family caregivers experience various losses when patients become terminally ill, yet little is known about the grief experienced by patients and caregivers and factors that influence grief as patients approach death. Additionally, few, if any, studies have explored associations between advance care planning (ACP) and grief resolution among cancer patients and caregivers. To fill this knowledge gap, the current study examined changes in grief over time in patients and their family caregivers and whether changes in patient grief are associated with changes in caregiver grief. We also sought to determine how grief changed following the completion of advance directives. The sample included advanced cancer patients and caregivers (n = 98 dyads) from Coping with Cancer III, a federally funded, multi-site prospective longitudinal study of end-stage cancer care. Participants were interviewed at baseline and at follow-up roughly 2 months later. Results suggest synchrony, whereby changes in patient grief were associated with changes in caregiver grief. We also found that patients who completed a living will (LW) experienced increases in grief, while caregivers of patients who completed a do-not-resuscitate (DNR) order experienced reductions in grief, suggesting that ACP may prompt “grief work” in patients while promoting grief resolution in caregivers.

Discussion and documentation of future care: a before-and-after study examining the impact of an alternative approach to recording treatment decisions on advance care planning in an acute hospital

2017 ◽  
Vol 10 (2) ◽  
pp. e12-e12 ◽  
Author(s):  
Alexandra C Malyon ◽  
Julia R Forman ◽  
Jonathan P Fuld ◽  
Zoë Fritz
Keyword(s):  
End Of Life ◽  
Advance Care Planning ◽  
Treatment Decisions ◽  
Care Planning ◽  
New Approach ◽  
Significance Level ◽  
Oncology Ward ◽  
Future Care ◽  
Advance Care ◽  
The Impact

ObjectiveTo determine whether discussion and documentation of decisions about future care was improved following the introduction of a new approach to recording treatment decisions: the Universal Form of Treatment Options (UFTO).MethodsRetrospective review of the medical records of patients who died within 90 days of admission to oncology or respiratory medicine wards over two 3-month periods, preimplementation and postimplementation of the UFTO. A sample size of 70 per group was required to provide 80% power to observe a change from 15% to 35% in discussion or documentation of advance care planning (ACP), using a two-sided test at the 5% significance level.ResultsOn the oncology ward, introduction of the UFTO was associated with a statistically significant increase in cardiopulmonary resuscitation decisions documented for patients (pre-UFTO 52% to post-UFTO 77%, p=0.01) and an increase in discussions regarding ACP (pre-UFTO 27%, post-UFTO 49%, p=0.03). There were no demonstrable changes in practice on the respiratory ward. Only one patient came into hospital with a formal ACP document.ConclusionsDespite patients’ proximity to the end-of-life, there was limited documentation of ACP and almost no evidence of formalised ACP. The introduction of the UFTO was associated with a change in practice on the oncology ward but this was not observed for respiratory patients. A new approach to recording treatment decisions may contribute to improving discussion and documentation about future care but further work is needed to ensure that all patients’ preferences for treatment and care at the end-of-life are known.

scholarly journals Advance care planning evaluation: a scoping review of best research practice

2021 ◽  
pp. bmjspcare-2021-003193
Author(s):  
Sophie Gloeckler ◽  
Tanja Krones ◽  
Nikola Biller-Andorno
Keyword(s):  
Advance Care Planning ◽  
Scoping Review ◽  
Retrospective Chart Review ◽  
Evidence Base ◽  
Future Research ◽  
Care Planning ◽  
Completion Rates ◽  
Future Care ◽  
Actual Care ◽  
Advance Care

Various indicators have been used to evaluate advance care planning, including completion rates, type of care received, and satisfaction. Recent consensus suggests, though, that receiving care consistent with one’s goals is the primary outcome of advance care planning and assessment should capture this metric. Goal concordant care is challenging to measure, and there is little clarity about how best to do so. The aim of this scoping review is to explore what methods have been used to measure goal concordant care in the evaluation of advance care planning. PubMed, Embase, PsycINFO, CINAHL and Cochrane were searched in September 2020 to identify studies that aimed to track whether advance care planning affected the likelihood of patients receiving care that matched their preferred care. 135 original studies were included for review. Studies used retrospective chart review (36%, n=49), questionnaire (36%, n=48) and interview (31%, n=42), focusing on both patients and proxies. Studies considered both actual care received (55%, n=74) and hypothetical scenarios anticipating possible future care (49%, n=66); some studies did both. While the reviewed studies demonstrate the possibility of working towards a solid methodology, there were significant weaknesses. Notably, studies often lacked enough reporting clarity to be reproducible and, relatedly, key concepts, such as end-of-life or preferred care, were left undefined. The recommendations that follow from these findings inform future research approaches, supporting the development of a strong evidence base to guide advance care planning implementation in practice.

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

2019 ◽  
Vol 33 (9) ◽  
pp. 1166-1175 ◽  
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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