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.

Assessing capacity in the context of testamentary, enduring power of attorney, and advance care directive documents in Australia

Balancing the competing interests of autonomy and protection of individuals is an escalating challenge confronting an ageing Australian population. Legal and medical professionals are increasingly being asked to determine whether individuals are legally capable to make their own testamentary, financial and/or personal/health care decisions. Diseases such as dementia impact upon cognition which necessitates collaboration between the legal and medical professions to satisfactorily assess the effect of such mentally disabling conditions upon legal competency. Terminological and methodological differences exist between the two professions when assessing capacity in this context which subsequently create miscommunication and misunderstanding. Consequently, it is not necessarily a simple solution for a legal professional to seek the opinion of a medical practitioner. Exacerbating the situation is the fact that no consistent and transparent capacity assessment paradigm currently exists in Australia. Assessments are instead being undertaken on an ad hoc basis dependent upon the skill set of the legal and/or medical professionals involved. A qualitative study seeking the views of legal and medical professionals who practise in this area has been conducted. This incorporated a review of the relevant literature and surveys which informed the semi-structured interviews conducted with 10 legal and 20 medical practitioners. Practitioners were asked whether there is a standard approach to assessment and whether national guidelines would assist. The general consensus was that uniform guidelines would be advantageous. The research also canvassed practitioner views as to the state of the relationship between the professions when assessing capacity. Three promising practices have emerged from this research: first, is the need for the development of national guidelines and supporting principles to satisfactorily assess capacity; second, is the possibility of strengthening the relationship between legal and medical professionals to assist in the satisfactory assessment of legal capacity; and third, the need for increased community education.

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.

Should law have a role in end-of-life care?

What do physicians think of law? Do they know the law? What role does it have in the provision of end-of-life care? Physicians in New South Wales, Victoria and Queensland are being asked about these issues in a study by the Queensland University of Technology entitled ‘Withholding and withdrawing life-sustaining treatment from adults who lack capacity: The role of law in medical practice’. This research aims to examine the role that law plays in decisions to withhold or withdraw life-sustaining treatment from adults who lack capacity.

Assessment of damages for wrongful birth and consolidation in advance care directives

The recent decision of Waller v James involved a claim by the plaintiff parents for damages for wrongful birth against the defendant doctor, Dr James, a gynaecologist with a practice in infertility and IVF procedures, who had been consulted by the plaintiffs. The second plaintiff, Mr Waller suffered an inherited anti-thrombin deficiency (ATD), a condition which results in a propensity for the blood to clot, at least in adults. Dr James subsequently recommended IVF treatment. The first plaintiff, Mrs Waller became pregnant after the first cycle of IVF treatment. Her son Keeden was born on 10 August 2000 with a genetic anti-thrombin deficiency. Keeden was released from hospital on 14 August 2000. However, he was brought back to the hospital the next day with cerebral thrombosis (CSVT). As a result of the thrombosis, he suffered permanent brain damage, cerebral palsy and related disabilities. The plaintiffs alleged that the defendant was in breach of contract and his common law duty of care to the plaintiffs in failing to inform them, or cause them to be informed, of the hereditary aspects of ATD. They further alleged that, had they been properly informed, they would not have proceeded to conceive a child using the male plaintiff’s sperm and therefore avoided the harm that had befallen them. The plaintiffs claimed damages to compensate them for their losses, including psychiatric and physical injuries and the costs of having, raising and caring for Keeden. The defendant was held to be not liable in negligence by Justice Hislop of the Supreme Court of New South Wales because a finding was made on medical causation which was adverse to the plaintiffs claim.

End of Life Decision Making and Palliative Care

1. An emergency department attendance represents an opportunity to set goals for care during the attendance and beyond. 2. End of life discussions and advance care planning assist early decision-making about treatment goals and end of life care. 3. Knowledge of the law assists decision-making at the end of life. 4. Not all dying patients require the skill set of a palliative care specialist but every dying patient will benefit from a palliative approach. 5. Palliative care does not preclude active treatment where the intent is understood by patient and family. 6. Failure to diagnose dying can compromise patient care. 7. The emergency department should foster close relationships with local specialist palliative care providers to improve and ensure timely access for patients and families and so that emergency staff have access to the knowledge and skills provided.

Prevalence and predictors of advance directives in Australia

Background Advance care planning is regarded as integral to better patient outcomes yet little is known about the prevalence of advance directives in Australia. Aims To determine the prevalence of advance directives (ADs) in the Australian population. Methods A national telephone survey about estate and advance planning. Sample was stratified by age (18-45 and >45 years) and quota sampling occurred based on population size in each State and Territory. Results Fourteen percent of the Australian population has an AD. There is State variation with people from South Australia and Queensland more likely to have an AD than people from other states. Will making and particularly completion of a financial enduring power of attorney are associated with higher rates of AD completion. Standard demographic variables were of limited use in predicting whether a person would have an AD. Conclusions Despite efforts to improve uptake of advance care planning (including ADs), barriers remain. One likely trigger for completing an AD and advance care planning is undertaking a wider future planning process (e.g. making a will or financial enduring power of attorney). This presents opportunities to increase advance care planning but steps are needed to ensure that planning which occurs outside the health system is sufficiently informed and supported by health information so that it is useful in the clinical setting. Variations by State could also suggest that redesign of regulatory frameworks (such as a user-friendly and well publicised form backed by statute) may help improve uptake of ADs.

Palliative care and other physicians’ knowledge, attitudes and practice relating to the law on withholding/withdrawing life-sustaining treatment: Survey results

Background: To effectively care for people who are terminally ill, including those without decision-making capacity, palliative care physicians must know and understand the legal standing of Advance Care Planning (ACP) in their jurisdiction of practice. This includes the use of advance directives/living wills (ADs) and substitute decision-makers (SDMs) who can legally consent to or refuse treatment if there is no valid AD. Aim: The study aimed to investigate the knowledge, attitudes and practices of medical specialists most often involved in end-of-life care in relation to the law on withholding/ withdrawing life-sustaining treatment (WWLST) from adults without decision-making capacity. Design/participants: A pre-piloted survey was posted to specialists in palliative, emergency, geriatric, renal and respiratory medicine, intensive care and medical oncology in three Australian States. Surveys were analysed using SPSS20 and SAS 9.3. Results: The overall response rate was 32% (867/2702); 52% from palliative care specialists. Palliative Care specialists and Geriatricians had significantly more positive attitudes towards the law (χ242 = 94.352; p < 0.001) and higher levels of knowledge about the WWLST law (χ27 = 30.033; p < 0.001), than did the other specialists, while still having critical gaps in their knowledge. Conclusions: A high level of knowledge of the law is essential to ensure that patients’ wishes and decisions, expressed through ACP, are respected to the maximum extent possible within the law, thereby according with the principles and philosophy of palliative care. It is also essential to protect health professionals from legal action resulting from unauthorised provision or removal of treatment.

End-of-life decision making for older people

This chapter deals with the increasing issues surrounding end-of-life decision making. As the life trajectory for older people changes, the need for open discussion about their health problems and treatment becomes more critical. Acceptance of the ageing process itself is often not easy so the matter of a good death is even more distressing for some people to consider. The vignette provides an excellent discussion on the need for open dialogue with the older person and their families, whether they are acutely ill or have chronic health problems. How a person wishes to be treated when quality of life is not going to improve, no matter what interventions are put in place, seems essential for person-centred care. The issue of competency is one that must be determined before any decision is made by any person involved in care.

What do emergency physicians think of law?

What do emergency physicians think of law? Do they know the law? What role does it have in the practice of emergency medicine? Emergency physicians in New South Wales, Victoria and Queensland are being asked about these issues in a study by the Queensland University of Technology, Brisbane, Australia, titled ‘Withholding and withdrawing life-sustaining treatment from adults who lack capacity: The role of law in medical practice’. The study aims to examine the role that law plays in decisions to withhold or withdraw life-sustaining treatment from adults who lack capacity.

Doctors' knowledge of the law on withholding and withdrawing life-sustaining medical treatment

Objectives To examine the level of knowledge of doctors about the law on withholding and withdrawing life-sustaining treatment from adults who lack decision-making capacity, and factors associated with a higher level of knowledge. Design, setting and participants Postal survey of all specialists in emergency medicine, geriatric medicine, intensive care, medical oncology, palliative medicine, renal medicine and respiratory medicine on the AMPCo Direct database in New South Wales, Victoria and Queensland. Survey initially posted to participants on 18 July 2012 and closed on 31 January 2013. Main outcome measures Medical specialists’ levels of knowledge about the law, based on their responses to two survey questions. Results Overall response rate was 32%. For the seven statements contained in the two questions about the law, the mean knowledge score was 3.26 out of 7. State and specialty were the strongest predictors of legal knowledge. Conclusions Among doctors who practise in the end-of-life field, there are some significant knowledge gaps about the law on withholding and withdrawing life-sustaining treatment from adults who lack decision-making capacity. Significant consequences for both patients and doctors can flow from a failure to comply with the law. Steps should be taken to improve doctors’ legal knowledge in this area and to harmonise the law across Australia.

Deathbed instructions and the assessment of capacity: A practical perspective

The assessment of capacity in the context of wills and advance care planning is a challenging task for modern practitioners with the increase in mentally disabling conditions, such as acquired brain injury. This challenge is only heightened in the situation where the assessment occurs at the client’s deathbed as there are the added elements of urgency, and emotional upheaval at the impending death of a loved one. This situation poses a minefield of problems a legal practitioner should be aware of, involving not only the assessment process but also potential professional liability issues. This presentation will address the practical considerations a legal professional should take into account when in this situation. We will focus on two discrete situations and the issues arising from them: first, where there has been an acquired brain injury and legal capacity is in question; and second, where a spinal injury has occurred which does not affect capacity, rather results in the inability to use conventional forms of communication to communicate his/her instructions. We will examine these case studies with a view to proposing a best practice model for legal practitioners when assessing capacity in this context.

Development of a Systematic Approach to Assessing Quality within Australian Residential Aged Care Facilities: The Clinical Care Indicators Tool

Recent years have seen the introduction of formalised accreditation processes in both community and residential aged care, but these only partially address quality assessment within this sector. Residential aged care in Australia does not yet have a standardised system of resident assessment related to clinical, rather than administrative, outcomes. This paper describes the development of a quality assessment tool aimed at addressing this gap. Utilising previous research and the results of nominal groups with experts in the field, the 21-item Clinical Care Indicators (CCI) Tool for residential aged care was developed and trialled nationally. The CCI Tool was found to be simple to use and an effective means of collecting data on the state of resident health and care, with potential benefits for resident care planning and continuous quality improvement within facilities and organisations. The CCI Tool was further refined through a small intervention study to assess its utility as a quality improvement instrument and to investigate its relationship with resident quality of life. The current version covers 23 clinical indicators, takes about 30 minutes to complete and is viewed favourably by nursing staff who use it. Current work focuses on psychometric analysis and benchmarking, which should enable the CCI Tool to make a positive contribution to the measurement of quality in aged care in Australia.

Planning and evaluation

- identify the importance of planning and evaluation in public health practice - recognise the links between planning and evaluation through the presentation of relevant models - identify the core concepts of needs assessment in public health - describe the evaluation cycle and the importance of an evaluation plan - understand evaluation designs and their application in practice.