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.

Advance care planning in different settings for people with dementia: A systematic review and narrative synthesis

2019 ◽  
Vol 17 (6) ◽  
pp. 707-719 ◽  
Author(s):  
Adele J. Kelly ◽  
Tim Luckett ◽  
Josephine M. Clayton ◽  
Liam Gabb ◽  
Slavica Kochovska ◽  
...  
Keyword(s):  
Systematic Review ◽  
Advance Care Planning ◽  
Future Research ◽  
Care Planning ◽  
People With Dementia ◽  
Future Care ◽  
Advance Care ◽  
Surrogate Decision ◽  
The Individual ◽  
Person With Dementia

AbstractBackgroundAdvance care planning (ACP) is identified as being an important process for people with dementia. However, its efficacy for improving outcomes relevant for the individual, carers and the health system has yet to be established.AimWe conducted a systematic review with the aims of testing the efficacy of ACP for people with dementia and describing the settings and population in which it has been evaluated.MethodsA search was completed of electronic databases in August 2016. Articles were included if they described interventions aimed at increasing planning for future care of people with dementia, delivered to the person with dementia, their carers and/or health professionals.ResultsOf 4,772 articles returned by searches, 30 met the inclusion criteria, testing interventions in nursing home (n= 16) community (n = 10) and acute care (n = 4) settings. Only 18 interventions directly involved the person with dementia, with the remainder focusing on surrogate decision-makers. In all settings, interventions were found effective in increasing ACP practice. In nursing homes, ACP was found to influence care and increase the concordance between end of life wishes and care provided. Interventions in the community were found to improve patient quality of life but were not shown to influence concordance.ConclusionFuture research should focus on ways to involve people with dementia in decision-making through supported means.

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.

Ethics of living and dying with dementia

2013 ◽  
Author(s):  
Cees Hertogh ◽  
Jenny van der Steen
Keyword(s):  
Advance Directives ◽  
Advance Care Planning ◽  
Disease Process ◽  
Policy Framework ◽  
Care Planning ◽  
Next Of Kin ◽  
Joint Decision ◽  
People With Dementia ◽  
Future Care ◽  
Advance Care

The gradual progression of dementia means there has to be a constant search for a reasonable balance between supporting autonomy and ensuring proper representation. ∙ Good end of life care for people with dementia depends on adequate advance care planning, startling early in the disease process ∙ Where possible, it involves striving for joint decision-making with the patient and next-of-kin about (future) medical treatment and (future) care. ∙ Written advance directives may support representatives of incompetent patients in their role of surrogate decision maker, but the contents of the directive require interpretation in the context of advance care planning. ∙ The concept of “palliative care” offers a (policy) framework for advance care planning as well as moral guideline for dealing with written advance directives of patients with dementia.

scholarly journals 142 Advance Care Planning in Patients with Dementia: An Audit on End of Life Care in Hospital Deaths

2019 ◽  
Vol 48 (Supplement_3) ◽  
pp. iii1-iii16
Author(s):  
Rachel Sullivan ◽  
Clodagh Power ◽  
Elaine Greene ◽  
Roisin Purcell
Keyword(s):  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Hospital Inpatient ◽  
Care Planning ◽  
Life Care ◽  
People With Dementia ◽  
Future Care ◽  
Advance Care ◽  
Resuscitation Status

Abstract Background End of life care (EOLC) planning is a difficult and often neglected area in dementia. Advanced care discussions play an important role in the planning of future care for patients with dementia. The NICE guidelines recommend that patients with dementia should be given every opportunity to discuss their wishes and preferences regarding their future care. The goal of our study was to explore the extent of EOLC planning in patients with dementia who died in hospital. Methods Patients with dementia who died in a large tertiary referral hospital in 2017 were identified via the Hospital Inpatient Enquiry (HIPE) database. A retrospective chart review was completed examining the documentation of Advance Care Planning (ACP) and discussions around end of life care. Charleston Comorbidity Index (CCI) was used to predict 1 year mortality. Results HIPE identified 49 patients with dementia who died in hospital. The average age was 84 and 53% were female. The commonest cause of death was respiratory (79.5%). Two thirds lived at home and 30% were nursing home residents. The mean CCI was 3.97 indicating 52% 1-year mortality, however only 34% were hospitalized in the last year. Only 14% had an ACP. Only 22% had resuscitation status recorded on admission. The majority had resuscitation status documented 15 days prior to death. In these cases 70% had clearly documented the discussion with family or patient and 84% documented ceilings of care 6 days prior to death. Palliative care were involved in 40% of cases. Two patients did not have resuscitation status documented prior to death and 3 received CPR. Conclusion Our study highlights the urgent need to facilitate conversations around end-of-life care with people with dementia. Advance care planning reduces the use of burdensome treatments, ensures dignity and comfort is prioritized enabling patients to live well until they die.

The implications of the Mental Capacity Act (MCA) 2005 for advance care planning and decision making

2018 ◽  
Author(s):  
Simon Chapman ◽  
Ben Lobo
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Advance Care Planning ◽  
Care Planning ◽  
Best Interest ◽  
Policy And Practice ◽  
Advance Care ◽  
Current Context ◽  
Mental Capacity Act ◽  
End Of Life Decision

This chapter provides an overview of the MCA’s impact on end-of-life care. It situates the MCA in the current context of policy and practice. It describes how the MCA can be used to improve care, enable people to express and protect choices, and empower and enable the professional and/or the proxy decision maker. It also presents an introduction and explanation of the role of the IMCA and how it might apply to advance care planning (ACP) and end of life decision making, and an explanation of the legal and ethical process involved in reaching best interest decisions, especially for potentially vulnerable people in care homes and other settings.

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.

scholarly journals ‘It’s almost superstition: If I don’t think about it, it won’t happen’. Public knowledge and attitudes towards advance care planning: A sequential mixed methods study

2021 ◽  
pp. 026921632110158
Author(s):  
Sonja McIlfatrick ◽  
Paul Slater ◽  
Olufikayo Bamidele ◽  
Deborah Muldrew ◽  
Esther Beck ◽  
...  
Keyword(s):  
Mixed Methods ◽  
Focus Group ◽  
Advance Care Planning ◽  
Public Awareness ◽  
Community Action ◽  
Care Plan ◽  
Care Planning ◽  
Knowledge And Attitudes ◽  
Sequential Mixed Methods ◽  
Advance Care

Background: Internationally, participation in advance care planning is low. Whilst a community action approach is advocated, what the public know and understand about advance care planning is unknown. Aim: To assess public awareness, knowledge and attitudes towards advance care planning and identify strategies to raise awareness within a public health framework. Design: Sequential mixed methods comprising a cross-sectional survey and focus group/interviews. Setting/participants: A random representative sample of adults from one region of the United Kingdom ( n = 1201; response rate 56%) completed a face-to-face survey. Twenty-five participants consented to an additional focus group/interview held in a secure accessible location or via telephone. Results: Most participants (78.7%) acknowledged the benefits of advance care planning conversations, however, two thirds did not want to think about advance care planning or find out more at present. Respondents were reluctant to broach advance care planning as it was linked to end of life care and funeral plans, and they did not wish to cause distress to their loved one. Respondents trusted their family to respect their wishes and they considered having an advance care plan in place would be of assistance in the future. Top-down leadership, normalisation, and increased education were identified as potential approaches to overcome barriers. Conclusions: Advance care planning was recognised as important despite limited awareness, lack of knowledge and misperceptions. Whilst a community action approach to enhance understanding and engagement was supported, a ‘one size fits all’ approach will not work; rather bespoke targeting is required with educational and media messaging aligned.

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 Couples affected by dementia and their experiences of advance care planning: a grounded theory study

2018 ◽  
Vol 40 (2) ◽  
pp. 439-460 ◽  
Author(s):  
Tony Ryan ◽  
Jane McKeown
Keyword(s):  
Grounded Theory ◽  
End Of Life ◽  
Advance Care Planning ◽  
Care Planning ◽  
Policy And Practice ◽  
Global Policy ◽  
Formal Service ◽  
People With Dementia ◽  
Advance Care ◽  
End Of Life Issues

AbstractGlobal policy places emphasis on the implementation and usage of advance care planning (ACP) to inform decision making at the end of life. For people with dementia, where its use is encouraged at the point of diagnosis, utilisation of ACP is relatively poor, particularly in parts of Europe. Using a constructivist grounded theory methodology, this study explores the ways in which co-residing couples considered ACP. Specifically, it seeks to understand the ways in which people with dementia and their long-term co-residing partners consider and plan, or do not plan, for future medical and social care. Sixteen participants were interviewed. They identified the importance of relationships in the process of planning alongside an absence of formal service support and as a result few engaged in ACP. The study recognises the fundamental challenges for couples in being obliged to consider end-of-life issues whilst making efforts to ‘live well’. Importantly, the paper identifies features of the ACP experience of a relational and biographical nature. The paper challenges the relevance of current global policy and practice, concluding that what is evident is a process of ‘emergent planning’ through which couples build upon their knowledge of dementia, their networks and relationships, and a number of ‘tipping points’ leading them to ACP. The relational and collective nature of future planning is also emphasised.

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.

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