Qualitative evaluation of advanced care planning in early dementia (ACP-ED).
Ontology highlight
ABSTRACT: Background
End-of-life-care is often poor in individuals with dementia. Advanced care planning (ACP) has the potential to improve end-of-life care in dementia. Commonly ACP is completed in the last six months of life but in dementia there may be problems with this as decision-making capacity and ability to communicate necessarily decrease as the disease progresses. Choosing the right time to discuss ACP with people with dementia may be challenging given the duration of the illness may be up to nine years.Aims
To explore the acceptability of discussing ACP with people with memory problems and mild dementia shortly after diagnosis.Methods
In-depth interviews were conducted with 12 patients and eight carers who had participated in ACP discussions and six staff members from a memory clinic and a community mental health team who had either conducted or attended the discussions for training purposes.Results
Patients and carers found ACP a positive intervention that helped them think about the future, enabled people with dementia to make their wishes known, and resulted in their feeling relieved and less worried about the future. The importance of sharing the ACP documentation between health service providers was highlighted.Conclusions
This qualitative evaluation of ACP in early dementia has encouragingly positive results which support the wider application of the intervention in memory services and community mental health teams. Strategies are suggested to support the implementation of ACP further in clinical practice.
SUBMITTER: Poppe M
PROVIDER: S-EPMC3629937 | biostudies-literature | 2013
REPOSITORIES: biostudies-literature
Publications
Qualitative evaluation of advanced care planning in early dementia (ACP-ED).
Poppe Michaela M Burleigh Sarah S Banerjee Sube S
PloS one 20130410 4
<h4>Background</h4>End-of-life-care is often poor in individuals with dementia. Advanced care planning (ACP) has the potential to improve end-of-life care in dementia. Commonly ACP is completed in the last six months of life but in dementia there may be problems with this as decision-making capacity and ability to communicate necessarily decrease as the disease progresses. Choosing the right time to discuss ACP with people with dementia may be challenging given the duration of the illness may be ...[more]
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Project description:BACKGROUND:Since the introduction of the concept of advance care planning (ACP), many studies have been conducted exploring beneficial effects. These studies show a heterogeneity in clinical endpoints, which reflects diversity of goals connected to ACP. This study aims to get insight in the range of underlying goals that comprise the legitimacy of ACP. METHODS:Systematic literature search in PubMed, EMBASE, PsychInfo, CINAHL and Cochrane Library. Articles on normative aspects of ACP were included, based on title and abstract. Due to the quantity of inclusions, of which many had similar content, purposive sampling was used to select articles for full text document analysis. Analysis stopped once saturation was reached. RESULTS:In total, 6497 unique articles were found of which 183 were included. Saturation was reached after document analysis of 55 articles (30%); this yielded 141 codes concerning goals of ACP and also 70 codes about objections against ACP, which shed light on the underlying goals of ACP as well. We identified five underlying goals: respecting individual patient autonomy, improving quality of care, strengthening relationships, preparing for end-of-life, reducing overtreatment. CONCLUSIONS:Five distinctive underlying goals of ACP were identified, each with corresponding objections that need to be considered. Specifying underlying goals of ACP may direct the debate on definitions, methods and preferred outcomes of ACP. This study was funded by the Netherlands Organisation for Health Research and Development, grant 839120002.
| S-EPMC7059342 | biostudies-literature
Project description:BackgroundTo assure patient-centred end-of-life care, palliative interventions need to account for patients' preferences. Advance care planning (ACP) is a structured approach that allows patients, relatives and physicians to discuss end-of-life decisions. Although ACP can improve several patient related outcomes, the implementation of ACP remains difficult. The col-ACP-study (collaborative advance care planning) will investigate a new ACP procedure (col-ACP-intervention (German: Hand-in-Hand Intervention)) in palliative cancer patients and their relatives that addresses individual values and targets barriers of communication before an ACP process.MethodsIn a randomised controlled trial, 270 cancer patients without curative treatment options and their relatives will receive either 1) col-ACP 2) a supportive intervention (active control group) or 3) standard medical care (TAU). col-ACP comprises two steps: a) addressing various barriers of patients and relatives that discourage them from discussing end-of-life issues followed by b) a regular, structured ACP procedure. The col-ACP-intervention consists of 6 sessions. Primary endpoint is the patients' quality of life 16 weeks after randomisation. Secondary endpoints include measurements of distress; depression; communication barriers; caregivers' quality of life; existence of ACP or advance directives; the consistence of end of life care; and others. Patients will be followed up for 13 months. Multivariate analyses will be carried out. Qualitative evaluation of the intervention will be conducted.DiscussionAugmentation of a regular ACP program by a structured psycho-oncological intervention is an innovative approach to target barriers of communication about end-of-life issues. Study findings will help to understand the value of such a combined intervention in palliative care.Trial registrationClinicalTrials.gov Identifier: NCT03387436 (Date of registration: 01/02/2018, retrospectively registered.
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Project description:BackgroundThe dementia care policy in Japan emphasizes the views of people living with dementia in care planning. An exploration of the everyday wishes of older people living with dementia can help clarify their priorities and assist in improving dementia care. This study aimed to explore the everyday wishes of older people living with dementia in Japan.MethodsThis qualitative study was conducted in Aichi prefecture in Japan. Older people with mild to moderate dementia were considered for inclusion. Participants were recruited from a dementia outpatient clinic. In-depth interviews were conducted with 36 participants in the same dementia outpatient clinic from January to October 2019. Audio-recorded interviews were transcribed verbatim. Inductive content analysis was carried out to analyze the data.FindingsParticipants expressed their everyday wishes within five themes (desire of being connected, freedom to decide, involvement in activities, status quo, and self-reliance). Older people living with dementia loved the connection with their family and wanted to have an enjoyable life by engaging in several activities without others' interference. They desired to maintain the status quo and not be a burden to others.ConclusionsThis study provides evidence on the everyday wishes of people living with dementia. Identified wishes are mostly on emotional aspects of their daily lives. The findings of our study might help provide care for the people living with dementia considering their wishes. Further exploration, including people with severe dementia, is needed.
| S-EPMC8840703 | biostudies-literature
Project description:BackgroundAdvance care planning (ACP) is particularly appropriate for persons with early dementia (PWED) since it promotes conversations about dementia-specific illness scenarios, addresses inconsistencies between advance directives and patients' observed behavior, emphasizes prospective and relational autonomy, and may be generally consistent with older persons' decision-making needs. However, despite evidence of its benefits, ACP is yet to become widely used among PWED. In this paper, we present a dementia-specific tool developed in Western Switzerland, discuss results of a pilot trial designed to promote ACP among PWED and their relatives, and discuss the feasibility and acceptability of the intervention and the study protocol in prevision of a large scale trial.MethodsThis one-arm pre-post pilot trial consisted of four visits, with visits 2 and 3 being the ACP intervention. Quantitative outcome measures during visit 1 and 4 assessed the aptitude of the intervention to support PWED autonomy and relatives' knowledge of PWED's preferences. Feasibility was explored according to how the recruitment procedure unfurled and based on the necessary revisions to the study protocol and healthcare providers' reason for excluding a PWED from the study. Acceptability was assessed according to pre-post evaluations, difficulties regarding the intervention or trial participation, and pre-post qualitative interviews regarding participants' reasons to participate to the study, satisfaction with the tool and difficulties perceived.ResultsThe ACP intervention itself was well received by PWED and their relatives that expressed satisfaction with the procedure, especially regarding the opportunity to discuss a sensitive topic with the help of a facilitator. Five main challenges in terms of feasibility were 1) to locate eligible patients, 2) to tailor recruitment procedures to recruitment locations, 3) to adapt inclusion criteria to clinical routines, 4) to engage PWED and their relatives in ACP, and 5) to design a trial that does not burden PWED. Despite these challenges, the intervention increased the number of advance directives, the concordance between PWED's preferences and relatives' decision on their behalf, and relatives' perceived control over healthcare decisions.ConclusionMisconceptions about dementia and ACP, in the patient, relatives, and healthcare providers, combined with structural and institutional challenges, have the power to impede research and implementation of ACP in dementia care. For this reason, we conclude that a large scale trial to test a dementia-specific tool of ACP is currently not feasible in Western Switzerland and should be endorsed in a systemic approach of ACP.Trial registrationThis trial was registered in the database clinicaltrial.gov with the number NCT03615027 .
| S-EPMC8524211 | biostudies-literature
Project description: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.
| S-EPMC6989589 | biostudies-literature
Project description:BackgroundAdvance care planning gives patients and their family members the possibility to consider and make decisions regarding future care and medical procedures.AimTo explore the view of people in the early stage of dementia on planning for future care.Research designThe study is a qualitative interview study with a semistructured interview guide. The data were analyzed according to the Qualitative Analysis Guide of Leuven.Participants and research contextDementia nurses assisted in the recruiting of people with dementia for participation in the study. Study information was mailed to 95 people with early stage dementia. Ten people with dementia and eight caregiver spouses participated in the study.Ethical considerationsPeople with dementia belong to a vulnerable patient group, and care was taken in the areas of informed consent and accessible information.FindingsThe views of people with dementia are characterized by a complex storyline involving tensions and movement within the themes of wants, beliefs, and levels of insight. Participants wanted to think about the future but also wanted to live in the here and now.DiscussionHigh demands are placed on the advance care planning process for people with dementia and their family caregivers. A dignity-enhancing approach in dementia care emphasizes the dignity of and respect for this vulnerable and care-dependent patient group.ConclusionThe process of advance care planning in dementia care needs to go beyond person-centered care to a relationship-centered process. The illness trajectory and the impact on autonomy need to be taken into consideration.
| S-EPMC9127932 | biostudies-literature
Project description:BackgroundAdvance Care Planning (ACP) helps people discuss personal values, goals and priorities regarding future care with family and professionals. It can support care coordination and guide decision-making as health deteriorates. However, uptake remains low internationally. Poor communication and information due to Covid-19 pressures exacerbated public and professional criticism and concerns. Recent recommendations highlight the importance of understanding and addressing public perceptions about ACP combined with person-centred approaches to ACP conversations.ObjectivesTo explore public perceptions of ACP to inform increased public engagement and empowerment.MethodsJoanna Briggs Institute methodology was applied in a rapid scoping review. Three databases (Embase, MEDLINE, APA PsycInfo) were searched for English language reviews and primary or secondary research studies from 2015 to 2021. Following title and abstract review, two researchers screened full-text articles and performed data extraction independently using Covidence. Charted data were analysed for themes and subthemes starting with two recent published reviews. Emerging findings were added and data synthesis reviewed by the research team, including public-patient representatives, to achieve consensus.ResultsOf 336 studies, 20 included reviews and research papers represented diverse public views, situations and contexts. Studies found poor public knowledge of ACP and widespread perceptions of confusing or accessible information. Multiple reports described little personal relevance, perceived risks of emotional distress, fears, mistrust and misconceptions about the purpose and scope of ACP. Studies identified public concerns stemming from reluctance to discuss death and dying despite this being just one aspect of ACP. Research with minority communities and marginalised groups found intensified concerns. Some studies cited people who valued maintaining autonomy by expressing their goals and preferences.ConclusionsStudies reviewed found many members of the public had negative or unclear perceptions of ACP. Improved knowledge and understanding appeared to influence perceptions of ACP but were not considered sufficient to change behaviours. The research provided valuable insights from members of the public that could inform current professional and societal debates about the future of ACP. Findings point to a need for novel approaches to ACP public information and involvement whilst bearing in mind societal norms, diverse cultures and contexts.
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Project description:BACKGROUND:While various initiatives have been taken to improve advance care planning in nursing homes, it is difficult to find enough details about interventions to allow comparison, replication and translation into practice. OBJECTIVES:We report on the development and description of the ACP+ program, a multi-component theory-based program that aims to implement advance care planning into routine nursing home care. We aimed to 1) specify how intervention components can be delivered; 2) evaluate the feasibility and acceptability of the program; 3) describe the final program in a standardized manner. DESIGN:To develop and model the intervention, we applied multiple study methods including a literature review, expert discussions and individual and group interviews with nursing home staff and management. We recruited participants through convenience sampling. SETTING AND PARTICIPANTS:Management and staff (n = 17) from five nursing homes in Flanders (Belgium), a multidisciplinary expert group and a palliative care nurse-trainer. METHODS:The work was carried out by means of 1) operationalization of key intervention components-identified as part of a previously developed theory on how advance care planning is expected to lead to its desired outcomes in nursing homes-into specific activities and materials, through expert discussions and review of existing advance care planning programs; 2) evaluation of feasibility and acceptability of the program through interviews with nursing home management and staff and expert revisions; and 3) standardized description of the final program according to the TIDieR checklist. During step 2, we used thematic analysis. RESULTS:The original program with nine key components was expanded to include ten intervention components, 22 activities and 17 materials to support delivery into routine nursing home care. The final ACP+ program includes ongoing training and coaching, management engagement, different roles and responsibilities in organizing advance care planning, conversations, documentation and information transfer, integration of advance care planning into multidisciplinary meetings, auditing, and tailoring to the specific setting. These components are to be implemented stepwise throughout an intervention period. The program involves the entire nursing home workforce. The support of an external trainer decreases as nursing home staff become more autonomous in organizing advance care planning. CONCLUSIONS:The multicomponent ACP+ program involves residents, family, and the different groups of people working in the nursing home. It is deemed feasible and acceptable by nursing home staff and management. The findings presented in this paper, alongside results of the subsequent randomized controlled cluster trial, can facilitate comparison, replicability and translation of the intervention into practice.
| S-EPMC6797173 | biostudies-literature
Project description:BackgroundBenefits of advance care planning (ACP) have recently been questioned by experts, but ACP is comprised of discrete activities. Little is known about which, if any, ACP activities are associated with patients' greater likelihood of receiving value-concordant end-of-life (EoL) care.ObjectivesTo determine which ACP activities [Do-Not-Resuscitate (DNR) order completion, designation of a healthcare proxy (HCP), and/or EoL discussions with physicians], individually and in combination, are associated with the greatest likelihood of receiving value-concordant care, and how results may vary based on patient-reported EoL care priorities.MethodsData from 2 federally-funded, multisite, prospective cohort studies of EoL cancer care from 2002-2019 were analyzed. Cancer patients (N = 278) with metastatic disease refractory to chemotherapy were interviewed for a baseline assessment and followed prospectively until death. Interviews regarding patient priorities occurred a median of 111 days prior to death; data regarding EoL medical care were collected post-mortem from caregiver interviews and medical record abstraction. Patients who 1) prioritized life-extending care, and then received life-extending care (or avoided hospice care), or 2) prioritized comfort-focused care, and then avoided life-extending care (or received hospice care) in the last week of life, were coded as receiving value-concordant care.ResultsAfter inverse propensity score weighting, the ACP combination associated with the largest proportion of patients receiving value-concordant care was DNR, HCP, and EoL discussions (87% vs. 64% for no ACP activities; OR = 3.91, p = 0.006). In weighted analyses examining each ACP activity individually, DNR orders were associated with decreased likelihood of life-extending care (89% vs. 75%; p = 0.005) and EoL discussions were associated with increased likelihood of hospice care (77% vs. 55%; p = 0.002) among patients prioritizing comfort. ACP activities were not significantly associated with increased likelihood of receiving value-concordant care among patients prioritizing life-extension.Conclusions and relevanceFor patients who prioritize comfort, EoL discussions with physicians and completion of DNR orders may improve odds of receiving value-concordant EoL care. For patients who prioritize life-extension, ACP does not appear to improve odds of receiving value-concordant EoL care.
| S-EPMC9833543 | biostudies-literature
Project description:Dementia syndrome is common and expected to increase significantly among older people and characterized by the loss of cognitive, psychological and physical functions. Palliative care is applicable for people with dementia, however they are less likely to have access to palliative care. This narrative review summarizes specifics of palliative care in advanced dementia. Most people with advanced dementia live and die in institutional care and they suffer a range of burdensome symptoms and complications. Shortly before dying people with advanced dementia suffer symptoms as pain, eating problems, breathlessness, neuropsychiatric symptoms, and complications as respiratory or urinary infections and frequently experience burdensome transitions. Pharmacological and nonpharmacological interventions may reduce symptom burden. Sensitive observation and appropriate assessment tools enable health professionals to assess symptoms and needs and to evaluate interventions. Due to lack of decisional capacity, proxy decision making is often necessary. Advanced care planning is an opportunity establishing values and preferences and is associated with comfort and decrease of burdensome interventions. Family carers are important for people with advanced dementia they also experience distress and are in need for support. Recommendations refer to early integration of palliative care, recognizing signs of approaching death, symptom assessment and management, advanced care planning, person-centered care, continuity of care, and collaboration of health care providers.
| S-EPMC7394698 | biostudies-literature