Advance Care Planning For People Research Articles

Incorporating advance care planning in dementia care.

Recent policy focus in dementia care has been on living well with the condition; however, being able to die well with dementia is of equal importance. Advance care planning (ACP) enables people to consider, express and record their wishes and preferences for palliative and end of life care, however there is a low uptake of ACP in people with dementia. Although ACP discussions should be initiated as soon as possible after a diagnosis of dementia, there are other opportunities and transition points in the person's care during which health and social care professionals could promote, engage in and support ACP discussions. This article considers the importance of ACP in dementia care and uses a case study to explore opportunities for initiating and engaging in ACP with people with dementia.

Intersectionality factors and equitable end-of-life experiences: rapid review

BackgroundEfforts to minimise inequity in palliative and end-of-life care (PEoLC) are well-researched. This is frequently explained by differences related to singular factors. The concept of intersectionality recognises that the combination of variables exacerbates disparities.ObjectiveTo identify and review what is known about intersectionality’s impact on experiences of PEoLC, including advance care planning (ACP).MethodsA rapid review with a narrative summary of peer-reviewed articles. Six electronic databases were searched for studies explicitly exploring the role of intersectionality in the experience of PEoLC and ACP for people with life-limiting or terminal illnesses, published in the last 10 years.ResultsIdentifying eligible papers was challenging. Of the 3738 papers found, only seven were eligible. Of the seven included papers, four explored the impact of intersectionality on access to and attitudes towards ACP. Two studies involved access to PEoLC and one considered quality of care received in the last year of life.ConclusionsUnderstanding intersectionality is crucial for delivering personalised approaches to care and support. The relationship between intersecting factors and end-of-life experiences is complex and there is currently a paucity of studies considering this. The majority of existing literature addresses a narrow range of variables. Additionally, the lack of guidance on the application of intersectionality in research, makes it difficult to compare and synthesise findings. Further diverse action-orientated research is necessary to produce impactful evidence to inform future policy with the aim of reducing inequity in PEoLC.

Two Approaches to Advance Care Planning for People with Dementia: Acceptability among US and Dutch Healthcare Providers

AbstractBackgroundAdvance care planning (ACP) may include concrete treatment orders or important goals or both. Providers may differ on these approaches to ACP, which may also differ across countries. We investigated the acceptability and preferences for these two ACP approaches for people with dementia among healthcare providers from the Netherlands (NL) and the US.MethodFifty providers from each country, whose specialty includes providing end‐of‐life care for people with dementia, viewed short animation videos about the two approaches of ACP and completed a semi‐structured interview. Qualitative content analysis summarized the comments of the providers on each ACP approach (reasons and conditions for acceptability, (dis)advantages, barriers and facilitators), and the reasons for their preferences.ResultExcept for three nurse practitioners from the US, all participants were physicians (e.g., NL: elderly care physicians, family physicians; US: geriatricians, internists, family medicine physicians). The acceptability and preferences were similar in the two countries. Both approaches were considered acceptable for people with dementia by the vast majority of providers (concrete orders approach: 86% (both countries); important goals approach: 96% (NL) and 98% (US)). Slightly more providers preferred the important goals approach compared to the concrete one (NL: 42% vs. 34%; US: 46% vs. 36%), others had no preference. While the concrete approach may facilitate immediate decisions in emergent situations and may be easier for providers to conduct with available forms, the important goals approach takes the life view of the person with dementia into consideration, can be implemented in more situations and may be easier for the person with dementia. Differences between the two countries included the role of the family caregivers and the power of providers to make decisions.ConclusionProviders found both approaches acceptable, but there was diversity in the preferred approach in both countries. Future research should investigate how the preference of individual providers interacts with the preferences of people with dementia and family caregivers, and whether this influences the experience of ACP and subsequent care provision. Examining administrative, legal, and educational issues that may shape preferences may inform more patient‐centered ACP.

Effectiveness of Advance Care Planning for People with Chronic Obstructive Pulmonary Disease: A Systematic Review and Meta-Analysis

Effectiveness of Advance Care Planning for People with Chronic Obstructive Pulmonary Disease: A Systematic Review and Meta-Analysis

End of Life Care and Advance Care Planning for People with Dementia: A Pilot Simulation Course for Healthcare Professionals

BackgroundDementia care is a serious public health concern. Many healthcare professionals lack education in providing quality end of life (EOL) care and advance care planning (ACP) for those affected. Simulation-based education (SBE) is suggested as an educational tool to practice human factor skills through simulated clinical settings. Sample21 healthcare professionals volunteered from an EOL pilot simulation education course. Methods: A one-day simulation course with The Human Factors Skills for Healthcare Instrument and a course-specific questionnaire completed at pre- and post-course for evaluation. ResultsParticipants’ human factor skills, confidence, and knowledge on EOL care and ACP significantly improved after the SBE course, p < .001. ConclusionThis study suggests SBE as a viable tool to improve healthcare professionals’ human factor skills and confidence in and knowledge of EOL care and ACP for dementia care. Further research should aim to investigate SBE's direct impact on clinical practice.

Advance care planning in multiple sclerosis: reflections of a palliative care physician

Multiple sclerosis (MS) has a long illness trajectory punctuated by serious acute events, with a later stage that is often accompanied by cognitive impairment. There is ample time for advance care planning (ACP) discussions. While there is much to be learned about the optimal way to approach ACP for people living with MS, it is possible to approach these discussions sensitively at all stages of the condition. However, as such voluntary discussions currently lie outside usual practice, people living with MS are denied the opportunities to consider the effect future medical treatments may have on their quality and length of life. How can clinicians assist in planning for a ‘good life’ and a ‘good death’?

Advance Care Planning for People with Schizophrenia and an End‑of‑Life Situation: A Qualitative Systematic Review

Introdução: As pessoas com esquizofrenia têm um risco acrescido de mortalidade ao mesmo tempo que recebem menos cuidados paliativos, dos quais o planeamento antecipado de cuidados éum componente essencial. O objetivo desta revisão éreunir as provas disponíveis relativamente ao planeamento antecipado de cuidados em contexto paliativo em pessoas com esquizofrenia, os seus obstáculos e as boas práticas a serem seguidas. &#x0D; Método: Revisão sistemática da literatura qualitativa ao longo dos últimos 20 anos relativamente à utilização de planeamento antecipado de cuidados em cuidados paliativos ou de fim de vida em pessoas com esquizofrenia. &#x0D; Resultados: Sete artigos foram incluídos na revisão. Por análise temática foram identificados cinco temas, nomeadamente, a capacidade de decisão em doenças mentais graves, as particularidades do planeamento antecipado de cuidados na pessoa com esquizofrenia, as características da esquizofrenia que afetam o planeamento antecipado dos cuidados, comunicação e formação, e a multidisciplinaridade e continuidade de cuidados. &#x0D; Conclusão: É urgentemente necessária mais investigação nesta área. Os pacientes enfrentam obstáculos relacionados com a sua doença mental, desconforto e dúvida por parte dos profissionais de saúde e falta de figuras de apoio. Uma abordagem multidisciplinar e colaborativa, a formação e o reconhecimento da capacidade inerente dos pacientes para fazerem escolhas e terem discussões eficazes sobre o seu estado de saúde, facilita o processo de planeamento antecipado de cuidados.

A realist review of advance care planning for people with multiple sclerosis and their families.

Advance care planning (ACP) is reported to improve the quality of outcomes of care among those with life-limiting conditions. However, uptake is low among people living with multiple sclerosis (MS) and little is known about why or how people with MS engage in this process of decision-making. To develop and refine an initial theory on engagement in ACP for people with MS and to identify ways to improve its uptake for those who desire it. Realist review following published protocol and reporting following Realist and Meta-narrative Evidence Synthesis: Evolving Standards (RAMESES) guidelines. A multi-disciplinary team searched MEDLINE, PsychInfo, CINAHL, Scopus, Web of Science, Embase, Google Scholar in addition to other sources from inception to August 2019. Quantitative or qualitative studies, case reports, and opinion or discussion articles related to ACP and/or end of life discussions in the context of MS were included, as well as one article on physical disability and one on motor neuron disease, that contributed important contextual information. Researchers independently screened abstracts and extracted data from full-text articles. Using abductive and retroductive analysis, each article was examined for evidence to support or refute 'context, mechanism, and outcome' (CMO) hypotheses, using the Integrated Behaviour Model to guide theory development. Quality was assessed according to methodological rigour and relevance of evidence. Those studies providing rich descriptions were synthesised using a realist matrix to identify commonalities across CMO configurations. Of the 4,034 articles identified, 33 articles were included in the synthesis that supported six CMO hypotheses that identified contexts and mechanisms underpinning engagement in ACP for people with MS and included: acceptance of their situation, prior experiences, confidence, empowerment, fear (of being a burden, of death and of dying) and the desire for autonomy. Acceptance of self as a person with a life-limiting illness was imperative as it enabled people with MS to see ACP as pertinent to them. We identified the context of MS-its long, uncertain disease trajectory with periods of stability punctuated by crisis-inhibited triggering of mechanisms. Similarly, the absence of skills and confidence in advanced communication skills among health professionals prevented possibilities for ACP discussions taking place. Although mechanisms are inhibited by the context of MS, health professionals can facilitate greater uptake of ACP among those people with MS who want it by developing their skills in communication, building trusting relationships, sharing accurate prognostic information and sensitively discussing death and dying.

What is important for advance care planning in the palliative phase of people with intellectual disabilities? A multi-perspective interview study.

Advance care planning (ACP) is the process of discussing and documenting wishes and preferences for future care. Research about ACP for people with intellectual disabilities (ID) is limited. This study describes what is important for ACP in the palliative phase of people with intellectual disabilities. In-depth interviews were conducted with people with intellectual disabilities (n=5), relatives (n=7) and professional caregivers (n=8). Qualitative data were analysed inductively, using the principles of thematic analysis. Important themes in ACP were as follows: tailoring care, working as a team and taking and giving time. The perceived role of people with intellectual disabilities in ACP was to express their wishes. Relatives had a signalling, representing and contributing role. Professionals felt their role was to inform, collaborate and coordinate. A staff training programme about ACP should cover how to build and maintain close relationships, provide a safe environment and address ACP as an integral part of care.

1907. Barriers at the Last Hurdle: Implementing Advance Care Planning for People Living with HIV

BackgroundAdvance care planning (ACP) is an increasingly relevant clinical practice as the HIV epidemic ages. In addition to a “graying” cohort of stable people living with HIV (PLHIV), late presentations predominate among newly-diagnosed older people in Singapore. Despite the availability of antiretroviral therapy (ART), prognosis remains guarded in these late presenters and PLHIV with poor adherence for whom ACP is more urgently needed. We sought to evaluate ACP implementation using a cascade-of-care model and determine barriers to its completion among PLHIV receiving care in an HIV specialty clinic.MethodsEligible PLHIV were identified during multidisciplinary meetings of the National University Hospital’s HIV care team from January 2016 to December 2017. Eligibility was based on any of the following: age ≥55; current CD4 <200; ART nonadherence; or comorbidities potentially contributing to reduced life expectancy. ACP was offered to eligible PLHIV by their primary HIV doctor. If accepted, trained ACP facilitators continued the process of communication between PLHIV, doctors and loved ones. The process was completed with documentation of an agreed plan for future medical decisions, incorporating patient’s personal beliefs and goals, and with a nominated healthcare spokesperson.ResultsAmong 432 PLHIV screened, 127 (29.4%) were eligible for ACP. Of these, 70 (55.1%) were offered, 47 (37.0%) accepted, and 12 (9.4%) completed ACP. Majority (38, 80.9%) who accepted ACP were ≥55 years old. Most were male (43, 91.4%) and of Chinese ethnicity (72%). We found no significant differences between those who were offered, accepted and completed ACP. Barriers were examined via root cause analysis. Social stigma surrounding death (cultural beliefs) and HIV (isolation, fear of disclosure, lack of a potential spokesperson) were the major patient-centered barriers to ACP. Time constraint was the main healthcare provider-centered factor.ConclusionFewer than 10% of eligible PLHIV completed ACP. Interventions to address barriers along the cascade are urgently needed to ensure that the increased life expectancy of PLHIV translates into increased opportunities for ACP. All healthcare providers should dedicate time, address stigma and correct misconceptions by incorporating ACP discussions into the routine care of PLHIV.Disclosures All authors: No reported disclosures.

Conceptualising Person-centered Advance Care Planning for People with Intellectual Disabilities: A Multifaceted Theoretical Approach

ABSTRACTDue to advances in care in recent decades, adults with intellectual disabilities (ID) are living longer than ever before. This requires increased attention to issues surrounding serious illness and end-of-life care. Person-centered advance care planning has been identified as an important aspect of respecting the wishes and values of individuals. Despite this, adults with ID are largely excluded from these discussions. This paper triangulates the Bioecological Theory of Human Development, Symbolic Interactionism, and the Human Rights Perspective to explore the complexity of person-centered care for older adults with ID. Specifically highlighted will be some of the ethical concerns and environmental barriers that limit the participation of adults with ID in person-centered care. The framework outlined in this paper seeks to facilitate a more comprehensive understanding among researchers, social workers, and care systems that there is nothing inherent in people with ID that precludes them from person-centered advance care planning and end-of-life care as they age and experience serious illness. Implications for social work practice will also be discussed.

Barriers and facilitators for GPs in dementia advance care planning: A systematic integrative review.

BackgroundDue to the disease’s progressive nature, advance care planning (ACP) is recommended for people with early stage dementia. General practitioners (GPs) should initiate ACP because of their longstanding relationships with their patients and their early involvement with the disease, however ACP is seldom applied.AimTo determine the barriers and facilitators faced by GPs related to ACP with people with dementia.Data sourcesWe systematically searched the relevant databases for papers published between January 1995 and December 2016, using the terms: primary healthcare, GP, dementia, and ACP. We conducted a systematic integrative review following Whittemore and Knafl’s method. Papers containing empirical data about GP barriers and/or facilitators regarding ACP for people with dementia were included. We evaluated quality using the Mixed-Method-Appraisal-Tool and analyzed data using qualitative content analysis.ResultsTen qualitative, five quantitative, and one mixed-method paper revealed four themes: timely initiation of ACP, stakeholder engagement, important aspects of ACP the conversation, and prerequisites for ACP. Important barriers were: uncertainty about the timing of ACP, how to plan for an uncertain future, lack of knowledge about dementia, difficulties assessing people with dementia’s decisional capacities, and changing preferences. Facilitators for ACP were: an early start when cognitive decline is still mild, inclusion of all stakeholders, and discussing social and medical issues aimed at maintaining normal life.ConclusionDiscussing future care is difficult due to uncertainties about the future and the decisional capacities of people with dementia. Based on the facilitators, we recommend that GPs use a timely and goal-oriented approach and involve all stakeholders. ACP discussions should focus on the ability of people with dementia to maintain normal daily function as well as on their quality of life, instead of end-of-life-discussions only. GPs need training to acquire knowledge and skills to timely initiate collaborative ACP discussions.

Advance Care Planning for People with Dementia in Western Australia: An Examination of the Fit Between the Law and Practice

This article examines the ‘fit’ between the Western Australian legislation on advance care planning (ACP) and health professionals’ experiences implementing this in relation to persons with dementia. The legislative provisions are outlined, and a qualitative study of experiences with ACP among 19 health professionals, all engaged in the care of persons with dementia, is described. Based on these interviews, the authors propose three themes: ‘navigating risk’, ‘the therapeutic journey’ and ‘the most agreeable outcome’ to describe current practice in this area. The authors conclude that ACP in this context is aimed at minimising risk, establishing consensus and achieving the ‘most agreeable outcome’ for the person and their family, rather than privileging the individual autonomy of the person engaging in ACP. The implications for policy and law makers regarding possible reform of ACP in relation to persons with dementia are discussed.

Better palliative care for people with a dementia: summary of interdisciplinary workshop highlighting current gaps and recommendations for future research

BackgroundDementia is the most common neurological disorder worldwide and is a life-limiting condition, but very often is not recognised as such. People with dementia, and their carers, have been shown to have palliative care needs equal in extent to those of cancer patients. However, many people with advanced dementia are not routinely being assessed to determine their palliative care needs, and it is not clear why this is so.Main bodyAn interdisciplinary workshop on “Palliative Care in Neurodegeneration, with a focus on Dementia”, was held in Cork, Ireland, in May 2016. The key aim of this workshop was to discuss the evidence base for palliative care for people with dementia, to identify ‘gaps’ for clinical research, and to make recommendations for interdisciplinary research practice. To lead the discussion throughout the day a multidisciplinary panel of expert speakers were brought together, including both researchers and clinicians from across Ireland and the UK. Targeted invitations were sent to attendees ensuring all key stakeholders were present to contribute to discussions. In total, 49 experts representing 17 different academic and practice settings, attended.Key topics for discussion were pre-selected based on previously identified research priorities (e.g. James Lind Alliance) and stakeholder input. Key discussion topics included: i. Advance Care Planning for people with Dementia; ii. Personhood in End-of-life Dementia care; iii. Topics in the care of advanced dementia at home. These topics were used as a starting point, and the ethos of the workshop was that the attendees could stimulate discussion and debate in any relevant area, not just the key topics, summarised under iv. Other priorities.ConclusionsThe care experienced by people with dementia and their families has the potential to be improved; palliative care frameworks may have much to offer in this endeavour. However, a solid evidence base is required to translate palliative care into practice in the context of dementia. This paper presents suggested research priorities as a starting point to build this evidence base. An interdisciplinary approach to research and priority setting is essential to develop actionable knowledge in this area.

End of Life Care: A Scoping Review of Experiences of Advance Care Planning for People with Dementia.

Despite increasing attention given to dementia by international governments and policy makers, the focus of end of life care has been on the dying trajectory of malignant disease. People with severe dementia have complex physical and psychological needs, yet the disease is not always recognised as terminal. Advance Care Planning involving people with dementia and their families can provide opportunities to discuss and later, initiate timely palliative care. We conducted a scoping review of studies exploring decisions associated with the EoLC of people with dementia. Eligible studies had to report on decision making at the end of life and by whom (the dying person, clinician/health professional or relative/family member). Twenty-five eligible studies reported on Advance Care Planning and end of life care decisions for individuals with dementia. The papers highlight several challenges that need to be addressed in order to provide adequate and effective care for people with dementia as they near the end of their life.

Thinking ahead – the need for early Advance Care Planning for people on haemodialysis: A qualitative interview study

Background: There is a need to improve end-of-life care for people with end-stage kidney disease, particularly due to the increasingly elderly, frail and co-morbid end-stage kidney disease population. Timely, sensitive and individualised Advance Care Planning discussions are acceptable and beneficial for people with end-stage kidney disease and can help foster realistic hopes and goals. Aim: To explore the experiences of people with end-stage kidney disease regarding starting haemodialysis, its impact on quality of life and their preferences for future care and to explore the Advance Care Planning needs of this population and the timing of this support. Study design: Semi-structured qualitative interview study of people receiving haemodialysis. Interviews were analysed using thematic analysis. Recruitment ceased once data saturation was achieved. Setting/participants: A total of 20 patients at two UK National Health Service hospitals, purposively sampled by age, time on haemodialysis and symptom burden. Results: Themes emerged around: Looking Back, emotions of commencing haemodialysis; Current Experiences, illness and treatment burdens; and Looking Ahead, facing the realities. Challenges throughout the trajectory included getting information, communicating with staff and the ‘conveyor belt’ culture of haemodialysis units. Participants reported a lack of opportunity to discuss their future, particularly if their health deteriorated, and variable involvement in treatment decisions. However, discussion of these sensitive issues was more acceptable to some than others. Conclusion: Renal patients have considerable unmet Advance Care Planning needs. There is a need to normalise discussions about preferences and priorities in renal and haemodialysis units earlier in the disease trajectory. However, an individualised approach is essential – one size does not fit all.

Advance care planning in people with early cognitive impairment

Background/aimPeople with early cognitive impairment (ECI), comprising mild cognitive impairment and early dementia face the risk of diminished mental capacity with progressive disease. Advance care planning (ACP) is advocated as...

Advance care planning for people living with dementia.

The prevalence of dementia is increasing, however it is only recently that dementia has been recognised as a terminal disease where end-of-life care needs to be discussed and planned with the patient and their family. Early diagnosis of dementia enables the person with dementia and their family to discuss the future, including plans for end-of-life care such as Advance Care Planning (ACP). However, discussions regarding end-of-life care are not routine practice for people with dementia and their families. This article reviews the literature regarding barriers that impact on healthcare professionals' engagement with ACP for people with dementia and their families.

A systematic review of the effectiveness of advance care planning interventions for people with cognitive impairment and dementia

advance care planning (ACP) allows a patient to state their preferences for care, so that if in future they cannot make decisions their wishes are known. Our aim was to review systematically the effectiveness of ACP interventions in people with cognitive impairment and dementia. systematic searches of key electronic databases, supplemented by hand searches of reference lists and consultation with experts. Two independent reviewers undertook screening, data extraction and quality assessment. four studies were included; three allocated providers randomly to intervention or control arm. All took place in nursing homes. Three studies reported formal processes of capacity assessment, only up to 36% of participants were judged to have capacity. Three studies reported positive findings in terms of documentation of patient preferences for care. Two studies reported significant reductions in hospitalisation rates; a third found increased use of hospice services in the intervention group. A meta-analysis could not be carried out due to heterogeneity of outcome measures. there is limited evidence for the effectiveness of ACP in people with cognitive impairment/dementia in terms of ACP documentation and health-care use. In terms of capacity to discuss ACP, nursing home settings may be too late for people with dementia.

Failing to Plan is Planning to Fail: Advance Care Planning for People Nearing the End of Life

Following the inaugural meeting in Melbourne, Australia, in 2010, the newly formed International Society for Advance Care Planning and End of Life Care (ACPEL) held its second International 3-day conference in London in June this year, hosted by the UK team of which Keri Thomas was convenor. This article gives an overview of the conference and one delegate’s perspective (R Newman). With over 400 delegates from across the world representing 22 different countries, the conference and society represent the increasing international recognition of the importance of holding and recording advance care planning discussions with people nearing the end of their lives, with a particular focus on the growing needs of the elderly in our society.