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

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

Palliative & Supportive Care ◽

10.1017/s1478951519000257 ◽

2019 ◽

Vol 17 (6) ◽

pp. 707-719 ◽

Cited By ~ 2

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.

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An introduction to advance care planning: practice at the frontline

10.1093/oso/9780198802136.003.0003 ◽

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.

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Advance care planning: the future

BMJ Supportive & Palliative Care ◽

10.1136/bmjspcare-2020-002304 ◽

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.

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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

BMJ Supportive & Palliative Care ◽

10.1136/bmjspcare-2016-001101 ◽

2017 ◽

Vol 10 (2) ◽

pp. e12-e12 ◽

Cited By ~ 2

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.

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A scoping review of nurse-led advance care planning

Nursing Outlook ◽

10.1016/j.outlook.2021.08.002 ◽

2021 ◽

Author(s):

Phyllis Whitehead ◽

Erica Frechman ◽

Marianne Johnstone-Petty ◽

Jeannette Kates ◽

Djin L. Tay ◽

...

Keyword(s):

Advance Care Planning ◽

Scoping Review ◽

Care Planning ◽

Advance Care

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Evidence Base of Advance Care Planning for Patients with Advanced Disease: research evidence leading to practical implementation

BMJ Supportive & Palliative Care ◽

10.1136/bmjspcare-2011-000053.18 ◽

2011 ◽

Vol 1 (1) ◽

pp. 71-71 ◽

Cited By ~ 2

Author(s):

S. N. Davison

Keyword(s):

Advance Care Planning ◽

Research Evidence ◽

Advanced Disease ◽

Evidence Base ◽

Practical Implementation ◽

Care Planning ◽

Disease Research ◽

Advance Care

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Prevalence of advance care planning in a resident run clinic in an underserved community.

Journal of Clinical Oncology ◽

10.1200/jco.2021.39.15_suppl.e24067 ◽

2021 ◽

Vol 39 (15_suppl) ◽

pp. e24067-e24067

Author(s):

Swetha Ann Alexander ◽

Vinay Mathew Thomas ◽

David Wu ◽

Radhika Kulkarni ◽

William Rabitaille

Keyword(s):

Primary Care ◽

African American ◽

Advance Care Planning ◽

Primary Care Clinic ◽

Retrospective Chart Review ◽

Care Planning ◽

Care Clinic ◽

Underserved Community ◽

Advance Care ◽

End Stage

e24067 Background: Advance Care Planning (ACP) ensures that patients receive care that is in line with their values and preferences. ACP is best done in the outpatient setting. Despite recognizing the importance of ACP, the rates of ACP completion continue to be low. We conducted a retrospective study to determine the rates of ACP in a resident run primary care clinic in Hartford, Connecticut, which serves the underserved community. We looked at patient characteristics to find correlation with ACP completion. We also aimed to determine the reasons which could decrease the completion of ACP. Methods: This was a retrospective chart review. Patients who met any of the inclusion criteria [i) Age>65 ii) End stage renal disease on dialysis iii) Metastatic/Recurrent cancer iv) End stage heart failure v) COPD Gold stage D] and were seen in the primary care clinic from September 1, 2019 to December 31, 2019 were selected. Their charts were reviewed to see if ACP was documented during primary care visits over the past two years. The demographics of the patients were noted. Subsequently, a survey was distributed to residents to determine the possible causes of low rates of ACP discussion. Results: The characteristics of the 373 patients included in the study are shown in Table 1. Only 14 (3.8%) of the 373 had documentation of ACP during their primary care visits. The characteristics of the 14 patients in whom ACP was done are as follows: Sex- Female 9/14 (64%); Ethnicity- Hispanic 10/14 (71%), African American 4/14 (29%); Religious Affiliation- Christian 13/14 (93%), None 1/14 (7%); Married/Partner 2/14 (14%). Patient demographics including sex (p 0.6), religious beliefs (p 0.8), and marital status (p 0.6) did not show any correlation with the likelihood of ACP completion. Of the 31 residents who answered the survey, the most commonly listed barriers to ACP completion were the following: lack of time to conduct these discussions (94%), forgetting to conduct ACP discussions (48%), and lack of training (19%). All the residents believed that ACP discussion was beneficial to patients and medical providers. Conclusions: The rates of ACP planning in our clinic are much lower than the national average. African American and Hispanics, who make up the majority of our clinic population, traditionally have had low rates of ACP completion. This is an important issue that needs to be addressed. Advance care planning training should be also be strengthened during residency. [Table: see text]

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