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.

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.

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.

End of life care - the importance of advance care planning

Background: Communication about end of life care may involve difficult conversations for patients, family members and health professionals. However, a lack of understanding of a person's wishes about their future care may result in a loss of dignity for the person, and additional distress for their family members and health professionals and burden to the healthcare system. Objective: This article discusses the barriers to advance care planning and provides some guidance for the general practitioner in undertaking advance care planning with patients and their families. Tips for initiating end of life discussions with patients and families utilising the 'PREPARED' acronym, and ensuring appropriate care delivery are included. Discussion: Involving patients and their family members in advance care planning may be challenging and time consuming for GPs. However, there are a number of resources to support this activity in relation to training, communication support and Medicare item funding.

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.

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.

Advance directives, autonomy and the refusal of life-sustaining medical treatment

As Australian society 1s agemg, individuals are increasingly concerned about managing their future, including making decisions about the medical treatment they may wish to receive or refuse if they lose decision-making capacity. To date, there has been relatively little research into the extent to which legal regulation allows competent adults to make advance refusals of life-sustaining medical treatment that will bind health professionals and others when a decision needs to be made at a future time. This thesis aims to fill this gap in the research by presenting the results of research into the legal regulation of advance directives that refuse life-sustaining medical treatment. In the five papers that comprise this thesis, the law that governs this area is examined, and the ethical principle of autonomy is used to critically evaluate that law. The principal finding of this research is that the current scheme of regulation is ineffective to adequately promote the right of a competent adult to make binding advance directives about refusal of medical treatment. The research concludes that legislation should be enacted to enable individuals to complete an advance directive, only imposing restrictions to the extent that this is necessary to promote individual autonomy. The thesis first examines the principle of autonomy upon which the common law (and some statutory law) is expressed to be based, to determine whether that principle is an appropriate one to underpin regulation. 1 The finding of the research is that autonomy can be justified as an organising principle on a number of grounds: it is consistent with the values of a liberal democracy; over recent decades, it is a principle that has been even more prominent within the discipline of medical ethics; and it is the principle which underpins the legal regulation of a related topic, namely the contemporaneous refusal of medical treatment. Next, the thesis reviews the common law to determine whether it effectively achieves the goal of promoting autonomy by allowing a competent adult to make an advance directive refusing treatment that will operate if he or she later loses decision-making capacity. 2 This research finds that conunon law doctrine, as espoused by the judiciary, prioritises individual choice by recognising valid advance directives that refuse treatment as binding. However, the research also concludes that the common law, as applied by the judiciary in some cases, may not be effective to promote individual autonomy, as there have been a number of circumstances where advance directives that refuse treatment have not been followed. The thesis then examines the statutory regimes in Australia that regulate advance directives, with a focus on the regulation of advance refusals of life-sustaining medical treatment.3 This review commences with an examination ofparliamentary debates to establish why legislation was thought to be necessary. It then provides a detailed review of all of the statutory regimes, the extent to which the legislation regulates the form of advance directives, and the circumstances in which they can be completed, will operate and can be ignored by medical professionals. The research finds that legislation was enacted mainly to clarify the common law and bring a level of certainty to the field. Legislative regimes were thought to provide medical professionals with the assurance that compliance with an advance directive that refuses life-sustaining medical treatment will not expose them to legal sanction. However, the research also finds that the legislation places so many restrictions on when an advance directive refusing treatment can be made, or will operate, that they have not been successful in promoting individual autonomy.

Territorial Integrity and Self-Determination : The Approach of the International Court of Justice in the Advisory Opinion on Kosovo

[EN] On 17 February 2008 Kosovo approved its declaration of independence from Serbia. The declaration was raised as a unilateral secession, a category which to date is widely debated by the international community, but supported in that case by a respectable number of the United Nation member states. A great many legal issues have been raised by the International Court of Justice's Advisory Opinion on Kosovo. This opinion was eagerly awaited by legal scholars due to both its possible effects and the scope of its principles outside the context of decolonization in what it could constitute of new approach to the international scenario for the twenty-first century. The ICJ stated that the declaration of independence was in accordance with international law if it was not prohibited. The answer turned on whether or not international law prohibited the declaration of independence, without ever examining whether an entity seeking secession is entitled with a positive right to secede and if so, under which circumstances. The basic issue can be summarised as whether or not we are facing a new course in the interpretation of certain classical categories of international law: the principle of territorial integrity, statehood, sovereignty, recognition, the right to external self-determination, etc. In this study we shall analyse some of the aspects arising from the Advisory Opinion of the International Court of Justice on the Accordance with international law of the unilateral declaration of independence in respect of Kosovo focusing on the territorial issue. Firstly we shall analyse the scope of the principle of territorial integrity of States and how it operates ; secondly, we shall focus on the scope of that principle in relation to the interior of the State, and ask ourselves how international law operates in relation to declarations of independence. Lastly, we shall deal with the principle of respect for territorial integrity in the specific case of Serbia with respect to Kosovo, and then end with a series of general conclusions. This study aims, definitely, to contribute to the theoretical debate on the challenges to the traditional certainties of international law in this area.

Translating person-centered care into practice: a comparative analysis of motivational interviewing, illness-integration support, and guided self-determination

OBJECTIVE: Person-centred care [PCC] can engage people in living well with a chronic condition. However, translating PCC into practice is challenging. We aimed to compare the translational potentials of three approaches: motivational interviewing [MI], illness integration support [IIS] and guided self-determination [GSD]. METHODS: Comparative analysis included eight components: (1) philosophical origin; (2) development in original clinical setting; (3) theoretical underpinnings; (4) overarching goal and supportive processes; (5) general principles, strategies or tools for engaging peoples; (6) health care professionals' background and training; (7) fidelity assessment; (8) reported effects. RESULTS: Although all approaches promoted autonomous motivation, they differed in other ways. Their original settings explain why IIS and GSD strive for life-illness integration, whereas MI focuses on managing ambivalence. IIS and GSD were based on grounded theories, and MI was intuitively developed. All apply processes and strategies to advance professionals' communication skills and engagement; GSD includes context-specific reflection sheets. All offer training programs; MI and GSD include fidelity tools. CONCLUSION: Each approach has a primary application: MI, when ambivalence threatens positive change; IIS, when integrating newly diagnosed chronic conditions; and GSD, when problem solving is difficult, or deadlocked. PRACTICE IMPLICATIONS: Professionals must critically consider the context in their choice of approach.