Advance Care Planning in palliative care : a systematic literature review of the contextual factors influencing its uptake 2008-2012

Background: Advance Care Planning is an iterative process of discussion, decision-making and documentation about end-of-life care. Advance Care Planning is highly relevant in palliative care due to intersecting clinical needs. To enhance the implementation of Advance Care Planning, the contextual factors influencing its uptake need to be better understood. Aim: To identify the contextual factors influencing the uptake of Advance Care Planning in palliative care as published between January 2008 and December 2012. Methods: Databases were systematically searched for studies about Advance Care Planning in palliative care published between January 2008 and December 2012. This yielded 27 eligible studies, which were appraised using National Institute of Health and Care Excellence Quality Appraisal Checklists. Iterative thematic synthesis was used to group results. Results: Factors associated with greater uptake included older age, a college degree, a diagnosis of cancer, greater functional impairment, being white, greater understanding of poor prognosis and receiving or working in specialist palliative care. Barriers included having non-malignant diagnoses, having dependent children, being African American, and uncertainty about Advance Care Planning and its legal status. Individuals’ previous illness experiences, preferences and attitudes also influenced their participation. Conclusion: Factors influencing the uptake of Advance Care Planning in palliative care are complex and multifaceted reflecting the diverse and often competing needs of patients, health professionals, legislature and health systems. Large population-based studies of palliative care patients are required to develop the sound theoretical and empirical foundation needed to improve uptake of Advance Care Planning in this setting.

Advance care planning in stroke: Influence of time on engagement in the process

Purpose Individuals who experience stroke have a higher likelihood of subsequent stroke events, making it imperative to plan for future medical care. In the event of a further serious health event, engaging in the process of advanced care planning (ACP) can help family members and health care professionals (HCPs) make medical decisions for individuals who have lost the capacity to do so. Few studies have explored the views and experiences of patients with stroke about discussing their wishes and preferences for future medical events, and the extent to which stroke HCPs engage in conversations around planning for such events. In this study, we sought to understand how the process of ACP unfolded between HCPs and patients post-stroke. Patients and methods Using grounded theory (GT) methodology, we engaged in direct observation of HCP and patient interactions on an acute stroke unit and two stroke rehabilitation units. Using semi-structured interviews, 14 patients and four HCPs were interviewed directly about the ACP process. Results We found that open and continual ACP conversations were not taking place, patients experienced an apparent lack of urgency to engage in ACP, and HCPs were uncomfortable initiating ACP conversations due to the sensitive nature of the topic. Conclusion In this study, we identified lack of engagement in ACP post-stroke, attributable to patient and HCP factors. This encourages us to look further into the process of ACP in order to develop open communication between the patient with stroke, their families, and stroke HCPs.

General practitioners perceptions on advance care planning for patients living with dementia

BACKGROUND: Advance care planning (ACP) facilitates communication and understanding of preferences, nevertheless the use of ACPs in primary care is low. The uncertain course of dementia and the inability to communicate with the patient living with dementia are significant challenges for GPs to initiate discussions on goals of care.

METHODS: A cross-sectional survey, using a purposive, cluster sample of GPs across Northern Ireland with registered dementia patients was used. GPs at selected practices received the survey instrument and up to four mail contacts was implemented.

RESULTS: One hundred and thirty-three GPs (40.6%) participated in the survey, representing 60.9% of surveyed practices. While most respondents regarded dementia as a terminal disease (96.2%) only 37.6% felt that palliative care applied equally from the time of diagnosis to severe dementia. While most respondents thought that early discussions would facilitate decision-making during advanced dementia (61%), respondents were divided on whether ACP should be initiated at the time of diagnoses. While most respondents felt that GPs should take the initiative to introduce and encourage ACP, most survey participants acknowledged the need for improved knowledge to involve families in caring for patients with dementia at the end of life and that a standard format for ACP documentation was needed.

CONCLUSION: Optimal timing of ACP discussions should be determined by the readiness of the patient and family carer to face to face end of life. ACP discussions can be enhanced by educational strategies directed towards the patient and family carer that enable shared decision-making with their GP when considering options in future care.

The views of general practitioners on advance care planning for patients living with dementia

Background Advance care planning (ACP) facilitates communication
and understanding of preferences, nevertheless the use of
ACPs in primary care for patients with dementia is low. The disease’s
uncertain course and the inability to communicate with
the patient living with dementia are significant challenges for
GPs.
Aim The purpose of this study was to describe the attitudes and
practice preferences of GPs working within the UK’s National
Health System (NHS) regarding communication, and decisionmaking
for patients with dementia and their families
Methods A cross-sectional survey, using a purposive, cluster sample
of GPs across Northern Ireland with registered dementia
patients was used.
Results One hundred and thirty-three GPs (40.6%) participated
in the survey, representing 60.9% of surveyed practices. While
most respondents regarded dementia as a terminal disease
(96.2%) only 37.6% felt that palliative care applied equally from
the time of diagnosis to severe dementia. While most respondents
thought that early discussions would facilitate decision-making
during advanced dementia (61%), respondents were divided
on whether ACP should be initiated at the time of diagnoses
(39.8% in favour vs 45.8% disagreed). Interestingly, GPs who
were longer in practice placed greater importance on the presence
of an advance directive (F (2, 124) = 3.38, p = 0.037).
Discussion The timing of initiating ACP varies across individuals
requiring GPs to carefully consider strategies and receptiveness
of the patient and family carer.
Conclusion The findings promote both ongoing training in communication
and dementia management for GPs to meet the
needs of their patients living with dementia.

Initiating advance care planning on end-of-life issues in dementia: Ambiguity among UK and Dutch physicians

Background
In dementia, advance care planning (ACP) of end-of-life issues may start as early as possible in view of the patient’s decreasing ability to participate in decision making. We aimed to assess whether practicing physicians in the Netherlands and the United Kingdom who provide most of the end-of-life care, differ in finding that ACP in dementia should start at diagnosis.

Methods
In a cross-sectional study, we surveyed 188 Dutch elderly care physicians who are on the staff of nursing homes and 133 general practitioners from Northern Ireland. We compared difference by country in the outcome (perception of ACP timing), rated on a 1–5 agreement scale. Regression analyses examined whether a country difference can be explained by contrasts in demographics, presence, exposure and role perceptions.

Results
There was wide variability in agreement with the initiation of ACP at dementia diagnosis, in particular in the UK but also in the Netherlands (60.8% agreed, 25.3% disagreed and 14.0% neither agreed, nor disagreed). Large differences in physician characteristics (Dutch physicians being more present, exposed and adopting a stronger role perception) hardly explained the modest country difference. The perception that the physician should take the initiative was independently associated with agreeing with ACP at diagnosis.

Conclusions
There is considerable ambiguity about initiating ACP in dementia at diagnosis among physicians practicing in two different European health care systems and caring for different patient populations. ACP strategies should accommodate not only variations in readiness to engage in ACP early among patient and families, but also among physicians.

Ethics and advance care planning in a culturally diverse society

Emerging international research suggests that in multicultural countries, such as Australia and the United States, there are significant disparities in end-of-life care planning and decision making by people of minority ethnic backgrounds compared with members of mainstream English-speaking background populations. Despite a growing interest in the profound influence of culture and ethnicity on patient choices in end-of-life care, and the limited uptake of advance care plans and advance directives by ethnic minority groups in mainstream health care contexts, there has been curiously little attention given to cross-cultural considerations in advance care planning and end-of-life care. Also overlooked are the possible implications of cross-cultural considerations for nurses, policy makers, and others at the forefront of planning and providing end-of-life care to people of diverse cultural and language backgrounds. An important aim of this article is to redress this oversight.

Advance care planning for older people in Australia presenting to the emergency department from the community or residential aged care facilities

The purpose of this retrospective, cross-sectional study was to determine the prevalence of advance care planning (ACP) among older people presenting to an Emergency Department (ED) from the community or a residential aged care facility. The study sample comprised 300 older people (aged 65+ years) presenting to three Victorian EDs in 2011. A total of 150 patients transferred from residential aged care to ED were randomly selected and then matched to 150 people who lived in the community and attended the ED by age, gender, reason for ED attendance and triage category on arrival. Overall prevalence of ACP was 13.3% (n = 40/300); over one-quarter (26.6%, n = 40/150) of those presenting to the ED from residential aged care had a documented Advance Care Plan, compared to none (0%, n = 0/150) of the people from the community. There were no significant differences in the median ED length of stay, number of investigations and interventions undertaken in ED, time seen by a doctor or rate of hospital admission for those with an Advance Care Plan compared to those without. Those with a comorbidity of cerebrovascular disease or dementia and those assessed with impaired brain function were more likely to have a documented Advance Care Plan on arrival at ED. Length of hospital stay was shorter for those with an Advance Care Plan [median (IQR) = 3 days (2–6) vs. 6 days (2–10), P = 0.027] and readmission lower (0% vs. 13.7%). In conclusion, older people from the community transferred to ED were unlikely to have a documented Advance Care Plan. Those from residential aged care who were cognitively impaired more frequently had an Advance Care Plan. In the ED, decisions of care did not appear to be influenced by the presence or absence of Advance Care Plans, but length of hospital admission was shorter for those with an Advance Care Plan.

Teaching general practitioners and doctors-in-training to discuss advance care planning : evaluation of a brief multimodality education programme

To develop and evaluate an interactive advance care planning (ACP) educational programme for general practitioners and doctors-in-training.

Uptake of a newly implemented advance care planning program in a dementia diagnostic service

BACKGROUND: advance care planning (ACP) provides a framework for discussion and documentation of future care preferences when a person loses cognitive capacity. It can assist people in the early stages of dementia to document their preferences for care at later stages of the illness. METHOD: a three-stage project introduced ACP to clients with mild cognitive impairment (MCI) or recently diagnosed dementia and their families through a specialist memory clinic. Over 8 months, all English-speaking clients (n = 97) and carers (n = 92) were mailed a survey assessing completed documentation for future care; understanding of the principles of ACP and willingness to get further information about ACP (Stage 1). Participants wanting more information were invited to a seminar introducing the ACP program and service (Stage 2). Participants wanting to complete ACP documentation could make an appointment with the ACP clinicians (Stage 3). RESULTS: forty-eight (52.2%) carers and 34 clients (35.1%) responded to the survey. Most clients (62.1%) and carers (79.1%) expressed interest in ACP, and 78.6% of clients and 63.6% of carers believed that clients should be involved in their future medical decisions. Nine clients (26.5%; diagnoses: MCI = 5; AD = 3; mixed dementia = 1) and 9 carers (18.8%) attended the seminars, and 2/48 (4%) carers and 3/34 (8.8%) clients (diagnoses: MCI = 2; AD = 1) completed ACP. CONCLUSION: despite initial interest, ACP completion was low. The reasons for this need to be determined. Approaches that may better meet the needs of people newly diagnosed with MCI and dementia are discussed.