End of life care is often inadequate for people with dementia. Advanced care planning (ACP) has the potential to improve outcomes for people with dementia. The aim of this review is to establish the ...strength of the evidence and provide decision makers with a clear understanding of what is known about ACP for people living with dementia.
Evidence synthesis including systematic reviews and primary studies. PROSPERO registration: CRD42018107718.
PubMed, CINAHL Plus, SCOPUS, Social Care Online and Cochrane Library were searched (July 2018). No year limit applied. To be included, reviews had to evaluate effectiveness of ACP for people with dementia or report on views and experiences of ACP from the perspective of people with dementia, carers, or health and care professionals. Additional searches (September 2018) were conducted to identify recent primary studies not included in the reviews.
Data extraction was undertaken by one reviewer and checked by a second. Methodological quality was assessed using AMSTAR-2 and Joanna Briggs Institute instruments by two authors independently. Outcomes were categorized and tabulated to assess effectiveness. Qualitative data was analysed using thematic synthesis.
Nineteen reviews (163 unique studies) and 11 primary articles with a range of advance care planning definitions and of variable quality were included. Advance care planning was associated with decreased hospitalizations, increased concordance between care received and prior wishes and increased completion of advance care planning documents but quality of primary research was variable. Views of ACP for people with dementia can be clustered around six themes; 1) timing and tailoring, 2) willingness to engage, 3) roles and responsibilities of healthcare professionals, 4) relationships, 5) training and 6) resources needed. Diminishing decision-making capacity over time is a key overarching feature.
Advance care planning is acceptable for people with dementia and their carers and is associated with improved outcomes. Guidelines on which outcomes and which definition to use are necessary, as is research to test different approaches to ACP. Education on topics related to diminishing decision-making capacity is key to optimize advance care planning for people with dementia and their carers.
BACKGROUND/OBJECTIVES
The Optimizing Patient Transfers, Impacting Medical Quality, Improving Symptoms: Transforming Institutional Care (OPTIMISTIC) project is a successful, multicomponent ...demonstration project to reduce potentially avoidable hospitalizations of long‐stay nursing facility residents. Systematic advance care planning (ACP) is a core component of the intervention, based on research suggesting ACP is associated with decreased hospitalizations of nursing facility residents. The purpose of this study was to describe associations between ACP documentation resulting from the OPTIMISTIC intervention and hospitalizations.
DESIGN
Specially trained project nurses were embedded in 19 nursing facilities and systematically engaged in ACP as part of a larger demonstration project.
PARTICIPANTS
Residents (n = 1482) enrolled in the demonstration project for a minimum of 30 days between January 1, 2015, and June 30, 2016.
MEASUREMENTS
ACP status: (1) Physician Orders for Scope of Treatment (POST) comfort measures or do not hospitalize (DNH) orders; (2) ACP orders with no hospitalization limit (eg, code status only); and (3) no ACP (potentially avoidable and all‐cause hospitalizations per 1000 resident days).
RESULTS
Residents with POST comfort measures/DNH orders (33.2% or n = 493) were less likely than residents with no ACP (14.7% or n = 218) to experience a potentially avoidable hospitalization (P = .001) or all‐cause hospitalization (P = .001). These differences became statistically nonsignificant after adjusting for age, functional status, and cognitive functioning.
CONCLUSION
In this successful multicomponent demonstration project to reduce potentially avoidable hospitalizations, ACP outcomes were not associated with hospitalization rates of nursing facility residents after adjusting for resident characteristics. These findings highlight the challenge of measuring the contributions of individual components of complex, multicomponent interventions. Associations between lower hospitalization rates and ACP completion may be influenced by contextual factors, such as clinical expertise and resources to manage acute conditions leading to hospitalization, in addition to interventions to increase ACP. J Am Geriatr Soc 67:1649–1655, 2019
We describe the development of ACP in Switzerland during the last decade in the German- and French-speaking cantons and on the national level. In 2013, a revision of the Swiss civil law came into ...force, declaring advance directives (ADs) as binding. Since then, ACP has been researched and implemented primarily by universities and university hospitals. Despite the foundation of the national association “ACP Swiss” in 2020, several national initiatives, and a roadmap for a national implementation, many challenges and barriers still remain. There is, however, reasonable hope to implement high-quality ACP throughout Switzerland within the next ten years.
Wir beschreiben die Entwicklung von Advance Care Planning (ACP) in den letzten zehn Jahren in den deutsch- und französischsprachigen Kantonen der Schweiz sowie auf nationaler Ebene. Im Jahr 2013 trat in der Schweiz eine Gesetzesrevision in Kraft, die Patientenverfügungen für verbindlich erklärte. Seitdem wurde ACP primär in Universitäten und Universitätsspitälern beforscht und implementiert. Ungeachtet der Gründung des nationalen Vereins ACP Swiss im Jahr 2020, verschiedener Schweiz-weiter Initiativen und einer Roadmap für die nationale Implementierung bleiben viele Herausforderungen und Barrieren bestehen. Es gibt jedoch begründete Hoffnung, dass innerhalb der nächsten zehn Jahre ein qualitativ hochwertiges ACP in der Schweiz implementiert werden kann.
Objectives
To determine whether advance care planning influences quality of end‐of‐life care.
Design
In this observational cohort study, Medicare data and survey data from the Health and Retirement ...Study (HRS) were combined to determine whether advance care planning was associated with quality metrics.
Setting
The nationally representative HRS.
Participants
Four thousand three hundred ninety‐nine decedent subjects (mean age 82.6 at death, 55% women).
Measurements
Advance care planning (ACP) was defined as having an advance directive (AD), durable power of attorney (DPOA) or having discussed preferences for end‐of‐life care with a next of kin. Outcomes included previously reported quality metrics observed during the last month of life (rates of hospital admission, in‐hospital death, >14 days in the hospital, intensive care unit admission, >1 emergency department visit, hospice admission, and length of hospice ≤3 days).
Results
Seventy‐six percent of subjects engaged in ACP. Ninety‐two percent of ADs stated a preference to prioritize comfort. After adjustment, subjects who engaged in ACP were less likely to die in a hospital (adjusted relative risk (aRR) = 0.87, 95% confidence interval (CI) = 0.80–0.94), more likely to be enrolled in hospice (aRR = 1.68, 95% CI = 1.43–1.97), and less likely to receive hospice for 3 days or less before death (aRR = 0.88, 95% CI = 0.85–0.91). Having an AD, a DPOA or an ACP discussion were each independently associated with a significant increase in hospice use (P < .01 for all).
Conclusion
ACP was associated with improved quality of care at the end of life, including less in‐hospital death and increased use of hospice. Having an AD, assigning a DPOA and conducting ACP discussions are all important elements of ACP.
Advance care planning (ACP) is increasingly implemented in oncology and beyond, but a definition of ACP and recommendations concerning its use are lacking. We used a formal Delphi consensus process ...to help develop a definition of ACP and provide recommendations for its application. Of the 109 experts (82 from Europe, 16 from North America, and 11 from Australia) who rated the ACP definitions and its 41 recommendations, agreement for each definition or recommendation was between 68–100%. ACP was defined as the ability to enable individuals to define goals and preferences for future medical treatment and care, to discuss these goals and preferences with family and health-care providers, and to record and review these preferences if appropriate. Recommendations included the adaptation of ACP based on the readiness of the individual; targeting ACP content as the individual's health condition worsens; and, using trained non-physician facilitators to support the ACP process. We present a list of outcome measures to enable the pooling and comparison of results of ACP studies. We believe that our recommendations can provide guidance for clinical practice, ACP policy, and research.
Advance care planning (ACP) documents patient wishes and increases awareness of palliative care options.
To study the association of outpatient ACP with advanced directive documentation, utilization, ...and costs of care.
This was a case-control study of cases with ACP who died matched 1:1 with controls. We used 12 months of data pre-ACP/prematch and predeath. We compared rates of documentation with logit model regression and conducted a difference-in-difference analysis using generalized linear models for utilization and costs.
Medicare beneficiaries attributed to a large rural-suburban-small metro multisite accountable care organization from January 2013 to April 2016, with cross reference to ACP facilitator logs to find cases.
The presence of advance directive forms was verified by chart review. Cost analysis included all utilization and costs billed to Medicare.
We matched 325 cases and 325 controls (51.1% female and 48.9% male, mean age 81). 320/325 (98.5%) ACP versus 243/325 (74.8%) of controls had a Healthcare Power of Attorney (odds ratio OR 21.6, 95% CI 8.6-54.1) and 172/325(52.9%) ACP versus 145/325 (44.6%) controls had Practitioner Orders for Life Sustaining Treatment (OR 1.40, 95% CI 1.02-1.90) post-ACP/postmatch. Adjusted results showed ACP cases had fewer inpatient admissions (-0.37 admissions, 95% CI -0.66 to -0.08), and inpatient days (-3.66 days, 95% CI -6.23 to -1.09), with no differences in hospice, hospice days, skilled nursing facility use, home health use, 30-day readmissions, or emergency department visits. Adjusted costs were $9,500 lower in the ACP group (95% CI -$16,207 to -$2,793).
ACP increases documentation and was associated with a reduction in overall costs driven primarily by a reduction in inpatient utilization. Our data set was limited by small numbers of minorities and cancer patients.
Despite recommendations for shared decision-making and advanced care planning (ACP) for people with chronic kidney disease (CKD), such conversations are infrequent. The MY WAY educational and patient ...coaching intervention aimed to promote high-quality ACP.
This qualitative substudy sought to gain participant feedback on the MY WAY ACP coaching intervention, and how it impacted their wishes, perceptions of kidney care, and factors that helped them reflect on ACP.
We conducted semi-structured interviews with participants from the intervention arm of the MY WAY study about their prior experience with ACPs in the context of CKD, impressions of the MY WAY intervention, and outcomes of the MY WAY intervention. We conducted a qualitative thematic analysis of transcribed interviews.
Among 15 intervention participants, the following major themes emerged: 1) Patients with CKD approach ACP with varied experiences; 2) Patients felt the MY WAY coaching intervention supported ACP by reinforcing values; and 3) Patients found the coaching intervention focused on end of life, but not necessarily on decision making regarding CKD.
Participants perceived the coaching intervention to have high utility in facilitating ACP, but had a limited impact on CKD-specific decision-making. These findings suggest that the coach plays a crucial role in comfort with ACP conversations and that ACP readiness and engagement may not correlate with treatment preferences or understanding of CKD treatment decisions.
Palliative care is recommended for all people with dementia from diagnosis through end-of-life. However, palliative care needs and effective elements of palliative care are not well-defined for the ...earlier stages of dementia.
To systematically map current research on palliative care early in the disease trajectory of dementia.
Scoping review of scientific literature.
PubMed, CINAHL, EMBASE, Cochrane, PsycINFO, Web of Science
We included studies published in English over the last decade (through March 2022) that focused on palliative care in early stages of dementia and targeted outcomes in palliative care domains. Two authors independently screened abstracts and full texts and scored the quality of included studies using tools by the Joanna Briggs Institute.
Among the 77 papers reviewed, few addressed early stages of dementia specifically. We found that: 1) While “early” palliative care was not well-defined in the literature, evidence indicated that palliative care needs were present at or before diagnosis and across the trajectory. Notable opportunities for palliative care arise at ‘tipping points’ (i.e., when symptoms, functional status, or caregiving needs change). 2) Palliative care needs in early dementia include advocacy for goal-aligned care in the future, reassurance against the threat of negligence and abandonment by caregivers, planning for future scenarios of care (practical, individual, and relational needs), and establishing of long-term relationships with providers entrusted for care later in disease. 3) Elements of effective palliative care in early dementia could include dementia-specific ACP and goals of care discussions, navigation for building a network of support, provision of tools and resources for family, tailored care and knowledge of the person, and well-prepared dementia-care providers. The scarcity of palliative care studies aimed at early disease indicates a gap in the evidence in dementia care.
The literature on palliative care in early dementia is sparse. Future studies should focus on assessment tools for optimizing timing of palliative care in early dementia, gaining better understanding of patient and family needs during early phases of disease, and providing training for providers and families in long-term relationships and communication around goals of care and future planning.
Background
It is unknown if the implementation of an advance care planning (ACP) program is feasible in daily clinical practice for glioblastoma patients. We aimed to develop an ACP program and ...assess the preferred content, the best time to introduce such a program in the disease trajectory, and possible barriers and facilitators for participation and implementation.
Methods
A focus group with health care professionals (HCPs) and individual semi-structured interviews with patients and proxies (of both living and deceased patients) were conducted.
Results
All predefined topics were considered relevant by participants, including the current situation, worries/fears, (supportive) treatment options, and preferred place of care/death. Although HCPs and proxies of deceased patients indicated that the program should be implemented relatively early in the disease trajectory, patient-proxy dyads were more ambiguous. Several patient-proxy dyads indicated that the program should be initiated later in the disease trajectory. If introduced early, topics about the end of life should be postponed. A frequently mentioned barrier for participation was that the program would be too confronting, while a facilitator was adequate access to information.
Conclusion
This study resulted in an ACP program specifically for glioblastoma patients. Although participants agreed on the program content, the optimal timing of introducing such a program was a matter of debate. Our solution is to offer the program shortly after diagnosis but let patients and proxies decide which topics they want to discuss and when. The impact of the program on several patient- and care-related outcomes will be evaluated in the next step.
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