Advance health directives : competing perceptions, intentions and use by patients and doctors in Queensland

This paper reports on mixed method empirical research undertaken with individuals who have completed advance health directives (‘principals’) and doctors who have either attested to the principal’s capacity when the document was completed or been called upon to use these documents in clinical settings. Principals and doctors appear to have different understandings of the purpose of these documents and their role in decision-making about medical treatment. We recommend changes to the advance health directive form in Queensland to promote informed decision-making which will help to better align perceptions of principals and doctors about the role of these documents.

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.

Enhancing social work interprofessional learning through across university and industry collaboration : early steps in the Advanced Health Directives Project

There is ongoing interest in strategies for enhancing the reciprocal benefit derived from social work placements by students, host agencies, and universities. There is also recognition that interprofessional learning is an important aspect of social work education,and that field education placements have a role to play in this learning. This article reports on an innovation in community-engaged learning undertaken between a major public hospital and a university, where a team of social work and law students contributed to a focused inquiry into a socio-legal practice challenge faced by the hospital, namely the use of Advanced Health Directives (AHDs).Various collaborative processes involved in the early phase of the AHD project are reflected on by participants.A preliminary evaluation supports the value of taking a systematic approach to university–industry engagement where interprofessional collaboration occurs vertically and horizontally within and across university and placement hosting agencies.

The legal role of medical professionals in decisions to withhold or withdraw life-sustaining treatment : Part 2 (Queensland)

This is the second article in a series of three that examines the legal role of medical professionals in decisions to withhold or withdraw life-sustaining treatment from adults who lack capacity. This article considers the position in Queensland, including the parens patriae jurisdiction of the Supreme Court. A review of the law in this State reveals that medical professionals play significant legal roles in these decisions. However, the law is problematic in a number of respects and this is likely to impede medical professionals’ legal knowledge in this area. The article examines the level of training medical professionals receive on issues such as advance health directives and substitute decision-making, and the available empirical evidence as to the state of medical professionals’ knowledge of the law at the end of life. It concludes that there are gaps in legal knowledge and that law reform is needed in Queensland.

Enduring documents : improving the forms, improving the outcomes

Most Australian states have introduced legislation to provide for enduring documents for financial, personal and health care decision making in the event of incapacity. Since the introduction of Enduring Powers of Attorney (EPAs) and Advance Health Directives (AHDs) in Queensland in 1998, concerns have continued to be raised by service providers, professionals and individuals about the uptake, understanding and appropriate use of these documents. In response to these concerns, the Department of Justice and Attorney-General (DJAG) convened a Practical Guardianship Initiatives Working Party. This group identified the limited evidence base available to address these concerns. In 2009, a multidisciplinary research team from the University of Queensland and the Queensland University of Technology was awarded $90,000 from the Legal Practitioners Interest on Trust Account Fund to undertake a review of the current EPA and AHD forms. The goal of the research was to gather data on the content and useability of the forms from the perspectives of a range of stakeholders, particularly those completing the EPA and AHD, witnesses of these documents, attorneys appointed under an EPA, and health professionals involved in the completion of an AHD or dealing with it in a clinical context. The researchers also sought to gather information from the perspective of Aboriginal and Torres Strait Islander (ATSI) individuals as well people from culturally and linguistically diverse (CALD) groups. Although the focus of the research was on the forms and the extent to which the current design, content and format represents a barrier to uptake, in the course of the research, some broader issues were identified which have an impact on the effectiveness of the EPA and AHD in achieving the goals of planning for financial and personal and health care in advance of losing capacity. The data gathered enabled the researchers to achieve the primary goal of the research: to make recommendations to improve the content and useability of the forms which hopefully will lead to an increased uptake and appropriate use of the forms. However, the researchers thought it was important not to ignore broader policy issues that were identified in the course of the research. These broader issues have been highlighted in this Report, and the researchers have responded to them in a variety of ways. For some issues, the researchers have suggested alterations that could be made to the forms to address the particular concerns. For other issues, the researchers have suggested that Government may need to take specific action such as educating the broader community with some attention to strategies that engage particular groups within communities. Other concerns raised can only be dealt with by legislative reform and, in some of these cases, the researchers have identified issues that Government may wish to consider further. We do note, however, that it is beyond the scope of this Report to recommend changes to the law. This three stage mixed methods project aimed to provide systematic evidence from a broad range of stakeholders in regard to: (i) which groups use and do not use these documents and why, (ii) the contribution of the length/complexity/format/language of the forms as barriers to their completion and/or effective use, and (iii) the issues raised by the current documents for witnesses and attorneys. Understanding and use of EPAs and AHDs were generally explored in separate but parallel processes. A purposive sampling strategy included users of the documents as principals and attorneys, and professionals, witnesses and service providers who assist others to execute or use the forms. The first component of this study built on existing knowledge using a Critical Reference Group and material provided by the DJAG Practical Guardianship Initiatives Working Party. This assisted in the development of the data collection tools for subsequent stages. The second component comprised semi-structured interviews and focus groups with a targeted sample of current users of the forms, potential users, witnesses and other professionals to provide in-depth information on critical issues. Outreach to Aboriginal and Torres Strait Islander Elders and individuals and workers with CALD groups ensured a broad sample of potential users of the two documents. Fifty individual interviews and three focus groups were completed. Most interviews and focus groups focused on perceptions of, and experiences with, either the EPA or the AHD form. In the interviews with Indigenous people and the CALD focus groups, however, respondents provided their perceptions and experiences of both documents. In general, these respondents had not used the forms and were responding to the documents made available in the interview or focus group. In total, seventy-seven individuals were involved in interviews or focus groups. The final component comprised on-line surveys for EPA principals, EPA attorneys, AHD principals, witnesses of EPAs and AHDs and medical practitioners with experience of AHDs as nominated and/or treating doctors. The surveys were developed from the initial component and the qualitative analysis of the interview and focus group data. A total of 116 surveys were returned from major cities and regional Queensland. The survey data was analysed descriptively for patterns and trends. It is important to note that the aim of the survey was to gain insight into issues and concerns relating to the documents and not to make generalisations to the broader population.

Competency and capacity : the legal and medical interface

Balancing the competing interests of autonomy and protection of individuals is an escalating challenge confronting an ageing Australian society. Legal and medical professionals are increasingly being asked to determine whether individuals are legally competent/capable to make their own testamentary and substitute decision-making, that is financial and/or personal/health care, decisions. No consistent and transparent competency/capacity assessment paradigm currently exists in Australia. Consequently, assessments are currently being undertaken on an ad hoc basis which is concerning as Australia’s population ages and issues of competency/capacity increase. The absence of nationally accepted competency/capacity assessment guidelines and supporting principles results in legal and medical professionals involved with competency/capacity assessment implementing individual processes tailored to their own abilities. Legal and medical approaches differ both between and within the professions. The terminology used also varies. The legal practitioner is concerned with whether the individual has the legal ability to make the decision. A medical practitioner assesses fluctuations in physical and mental abilities. The problem is that the terms competency and capacity are used interchangeably resulting in confusion about what is actually being assessed. The terminological and methodological differences subsequently create miscommunication and misunderstanding between the professions. Consequently, it is not necessarily a simple solution for a legal professional to seek the opinion of a medical practitioner when assessing testamentary and/or substitute decision-making competency/capacity. This research investigates the effects of the current inadequate testamentary and substitute decision-making assessment paradigm and whether there is a more satisfactory approach. This exploration is undertaken within a framework of therapeutic jurisprudence which promotes principles fundamentally important in this context. Empirical research has been undertaken to first, explore the effects of the current process with practising legal and medical professionals; and second, to determine whether miscommunication and misunderstanding actually exist between the professions such that it gives rise to a tense relationship which is not conducive to satisfactory competency/capacity assessments. The necessity of reviewing the adequacy of the existing competency/capacity assessment methodology in the testamentary and substitute decision-making domain will be demonstrated and recommendations for the development of a suitable process made.

Evaluation of legal capacity by doctors and lawyers : the need for collaborative assessment

• Balancing the interests of individual autonomy and protection is an escalating challenge confronting an ageing Australian society. • One way this is manifested is in the current ad hoc and unsatisfactory way that capacity is assessed in the context of wills, enduring powers of attorney and advance health directives. • The absence of nationally accepted assessment guidelines results in terminological and methodological miscommunication and misunderstanding between legal and medical professionals. • Expectations between legal and medical professionals can be clarified to provide satisfactory capacity assessments based upon the development of a sound assessment paradigm

Assessing testamentary capacity – who does it better? Lawyers or doctors?

The effects of mentally disabling conditions on legal capacity are escalating, particularly given the ageing Australian demographic. Wills, enduring powers of attorney, and advance health directives are coming to the fore as a means of ensuring that the wishes of people with regard to their property, finances and health care needs are respected should they become legally incapable of making their own decisions. Assessing when a person has lost legal capacity in this context is an ever-increasing concern facing society as a whole but, in particular, the legal and medical professionals conducting the assessments. Empirical and doctrinal research has been undertaken which canvassed legal and medical opinions about the relationship between members of these professions when assessing legal capacity. This research supports the hypothesis that tensions exist when assessing capacity, especially testamentary capacity. One source of tension is the effect of conflicting evidence about the loss of legal capacity given by legal and medical professionals in court, which raises questions such as: which evidence is, and should be, preferred; and who should be responsible? The exploration of these issues will be conducted with reference to the empirical data collected, and a review of the relevant Australian case law.

Effects of two intervention strategies on the behavior of nurses and nurse students related to advance directives

Advance directives are one mechanism for preserving the rights of individuals to exercise some control over their health care when serious illness may prevent them from direct participation. Nurses, as the health care providers with the closest and most sustained contact with critically ill and dying patients, are positioned to assist patients to plan for future health care needs. Although a majority of nurses favor the concept of advance directives for their patients and for themselves, they have not played a significant role in facilitating advance health care planning with their patients nor implemented advance health care planning for themselves.^ Research has also shown that differing forms of education and counseling increase the completion rates for advance directives in selected populations, mostly the elderly and seriously ill. Not yet developed are effective educational strategies to assist nurses and nurse students to make optimal contributions in assisting their clients' plans for future health care decision-making. This study sought to determine whether specific learning strategies (a) increased the involvement of nurses and nurse students in facilitating advance care planning with patients and (b) increased the percentage of the nurses' and nurse students' own personal advance care planning activities.^ The study compared two learning interventions and two populations, nurses and nurse students. The participants were randomly assigned to one of the two learning interventions, L1 or L2. Participants in L1 received a lecture, discussion and exploration of the forces impacting on advance directive behavior. Participants in L2 received the same intervention components with the additional component of group practice completing advance directives.^ Analysis of the data by chi-square and logistic regression did not support the hypotheses that the practice component would make a difference in the participants' facilitation of advance care planning with patients or in their own personal advance care planning activities. There were significant differences in post-intervention behavior between the nurse and nurse student groups. The nurses in the study did significantly more facilitation of advance care planning with patients and completed significantly more advance care documents than the nurse students post-intervention. However, the nurse students held more post-intervention family discussions than did the nurses. ^

What contribution can International Relations make to the evolving global health agenda?

This article presents two approaches that have dominated International Relations in their approach to the international politics of health. The statist approach, which is primarily security-focused, seeks to link health initiatives to a foreign or defence policy remit. The globalist approach, in contrast, seeks to advance health not because of its intrinsic security value but because it advances the well-being and rights of individuals. This article charts the evolution of these approaches and demonstrates why both have the potential to shape our understanding of the evolving global health agenda. It examines how the statist and globalist perspectives have helped shape contemporary initiatives in global health governance and suggests that there is evidence of an emerging convergence between the two perspectives. This convergence is particularly clear in the articulation of a number of UN initiatives in this area—especially the One World, One Health Strategic Framework and the Oslo Ministerial Declaration (2007) which inspired the first UN General Assembly resolution on global health and foreign policy in 2009 and the UN Secretary-General's note ‘Global health and foreign policy: strategic opportunities and challenges'. What remains to be seen is whether this convergence will deliver on securing states’ interest long enough to promote the interests of the individuals who require global efforts to deliver local health improvements.

Une analyse des limites inhérentes au nouveau régime des directives médicales anticipées face à l'essor du droit à l'autonomie décisionnelle du patient

Résumé : La Loi concernant les soins de fin de vie ainsi que la mise en place du régime des directives médicales anticipées sont le résultat d’une profonde transformation sociétale, guidée par l’importance grandissante du respect de l’autonomie décisionnelle des personnes et à leur droit à l’autodétermination. Au regard de ce contexte, cet essai décrit en première partie l’état du droit actuel en matière de volontés exprimées de manière anticipée, il analyse les enjeux qui s’y rapportent tout en soulevant les pistes de réflexion déjà amorcées en droit québécois. Il existe effectivement de nombreux outils qui permettent à un individu d’exprimer ses volontés en prévision de son inaptitude, mais les directives médicales anticipées se distinguent d’une façon bien précise : elles possèdent un caractère contraignant qui reconnaît la primauté des volontés relatives aux soins. Or, parallèlement à cela, le régime des directives médicales anticipées impose des limites à ce droit. Dans ce contexte d’essor du droit à l’autonomie, cet essai étudie, en seconde partie, les limites inhérentes au régime des directives médicales anticipées puis propose une analyse critique des défis liés à l’opérationnalisation clinique de ces directives.

O debate bioético e jurídico sobre as diretivas antecipadas de vontade

Pós-graduação em Direito - FCHS

Advance Directives and the Promotion of Autonomy: a Comparative Australian Statutory Analysis

Legislation regulating advance directives exists in six Australian jurisdictions. In all of these jurisdictions, legislation was enacted to enshrine the common law right of a competent adult to refuse treatment in advance, even if that treatment was required to sustain life. It was thought that enshrining the common law would also enshrine the principle of autonomy on which the common law was based. This article explores whether this is the case by examining the legislative restrictions that are imposed on a competent adult who wishes to complete an advance directive refusing treatment. The article reviews the legislation in all Australian jurisdictions and concludes that, while many of the legislative restrictions can be justified, many cannot as they effectively erode rather than promote the right of a competent adult to refuse treatment.

Advance Directives Refusing Treatment as an Expression of Autonomy: Do the Courts Practise What They Preach?

The principle of autonomy is at the heart of the right of a competent individual to make an advance directive that refuses life-sustaining medical treatment, and to have that directive complied with by medical professionals. That right is protected by both the common law and, to an extent, by legislation that has been enacted in the United Kingdom and many jurisdictions in Australia. The courts have a critical role in protecting that autonomy, both in those jurisdictions in which the common law continues to operate, and in those jurisdictions which are now governed by statute, and in which judicial determinations will need to be made about legislative provisions. The problem explored in this article is that while the judiciary espouses the importance of autonomy in its judgments, that rhetoric is frequently not reflected in the decisions that are reached. In the United Kingdom and Australia, there is a relatively small number of decisions that consider the validity and applicability of advance directives that refuse life-sustaining medical treatment. This article critically evaluates all of the publicly available decisions and concludes that there is cause for concern. In some cases, there has been an unprincipled evolution of common law principles, while in others there has been inappropriate adjudication through operational irregularities or failure to apply correct legal principles. Further, some decisions appear to be based on a strained interpretation of the facts of the case. The apparent reluctance of some members of the judiciary to give effect to advance directives that refuse treatment is also evidenced by the language used in the judgments. While the focus of this article is on common law decisions, reference will also be made to legislation and the extent to which it has addressed some of the problems identified in this article.