Measurement of Advance Directive and Medical Treatment Decision-Making Capacity of Older Adults

The objective of this study was to characterize two components of decisional competence that are relevant to advance directive (AD) completion and medical treatment decision making among a subsample of older adults hospitalized in acute care settings.

A quantitative application of symbolic interactionism to advance directive completion by older adults

This study examined contextual and situational influences on older adults' decision to complete advance directives by means of a conceptual framework derived from symbolic interactionist theory and a cross-sectional, correlational research design. It was hypothesized that completion of advance directives among older adults would be associated with visiting or participating in the care of a terminally ill or permanently incompetent individual sustained by technology. Using a 53-item questionnaire, computer assisted telephone interviews (CATI) were conducted with 398 community dwelling adults between September and October 2003. Respondents were contacted using random-select dialing from a listed sample of 99% of household telephone numbers in one South Florida census tract. Over 90% of households in this tract include an individual age 65 or older. ^ The results revealed that contrary to most reports in the literature a substantial proportion of older adults (82%) had completed advance directives and that the link between older adults and document completion was mainly through attorneys and not mandated agents, health care professionals. Further, more than one third of older adults reported that religion/spirituality was not an important part of their life, suggesting that the recommended practice of offering religious/spiritual counseling to all those approaching death be reexamined. The hypothesis was not supported (p > .05) and is explained by the situational emphasis on the variables rather than on structural influences. In logistic regression analysis, only increasing age (p = .001) and higher education (p = < .001) were significant but explained only 10% of the variance in document completion. ^ Based on the findings, increased interdisciplinary collaboration is suggested with regard to the advance directive agenda. Since attorneys play a key role in document completion, other professions should seek their expertise and collaboration. In addition, the inclusion of a religious/spiritual preference section in all living wills should be considered as an essential part of a holistic and individually appropriate document. Implications for social work education, practice, and advocacy are discussed as well as suggestions for further research. ^

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.

Law autonomy and advance directives

The principle of autonomy underpins legal regulation of advance directives that refuse life-sustaining medical treatment. The primacy of autonomy in this domain is recognised expressly in the case law, through judicial pronouncement, and implicitly in most Australian jurisdictions, through enactment into statute of the right to make an advance directive. This article seeks to justify autonomy as an appropriate principle for regulating advance directives and relies on three arguments: the necessity of autonomy in a liberal democracy; the primacy of autonomy in medical ethics discourse; and the uncontested importance of autonomy in the law on contemporaneous refusal of medical treatment. This article also responds to key criticisms that autonomy is not an appropriate organising principle to underpin legal regulation of advance directives.

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.

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.

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.

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. ^

Withholding and withdrawing life-sustaining medical treatment

• At common law, a competent adult can refuse life-sustaining medical treatment, either contemporaneously or through an advance directive which will operate at a later time when the adult’s capacity is lost. • Legislation in most Australian jurisdictions also provides for a competent adult to complete an advance directive that refuses life-sustaining medical treatment. • At common law, a court exercising its parens patriae jurisdiction can consent to, or authorise, the withdrawal or withholding of life-sustaining medical treatment from an adult or child who lacks capacity if that is in the best interests of the person. A court may also declare that the withholding or withdrawal of treatment is lawful. • Guardianship legislation in most jurisdictions allows a substitute decision-maker, in an appropriate case, to refuse life-sustaining medical treatment for an adult who lacks capacity. • In terms of children, a parent may refuse life-sustaining medical treatment for his or her child if it is in the child’s best interests. • While a refusal of life-sustaining medical treatment by a competent child may be valid, this decision can be overturned by a court. • At common law and generally under guardianship statutes, demand for futile treatment need not be complied with by doctors.

Withholding and withdrawing life-sustaining medical treatment

• At common law, a competent adult can refuse life-sustaining medical treatment, either contemporaneously or through an advance directive which will operate at a later time when the adult’s capacity is lost. • Legislation in most Australian jurisdictions also provides for a competent adult to complete an advance directive that refuses life-sustaining medical treatment. • At common law, a court exercising its parens patriae jurisdiction can consent to, or authorise, the withdrawal or withholding of life-sustaining medical treatment from an adult or child who lacks capacity if that is in the best interests of the person. A court may also declare that the withholding or withdrawal of treatment is lawful. • Guardianship legislation in all jurisdictions allows a substitute decision-maker, in an appropriate case, to refuse life-sustaining medical treatment for an adult who lacks capacity. • In terms of children, a parent may refuse life-sustaining medical treatment for his or her child if it is in the child’s best interests. • While a refusal of life-sustaining medical treatment by a competent child may be valid, this decision can be overturned by a court. • At common law and generally under guardianship statutes, demand for futile treatment need not be complied with by doctors.

IPOST Essentials, April 28, 2014

IPOST stands for: Iowa Physician Orders for Scope of Treatment. The IPOST is a standardized, clearly identifiable one page, salmon colored form. The IPOST allows an individual to communicate their treatment preferences for life-sustaining treatments. This is a communication tool that is complementary to an advance directive. An IPOST is appropriate for individuals who are frail and elderly, have a chronic, serious critical medical condition, or terminal illness. To date, the following counties have launched the IPOST program: Linn, Jones, Johnson, Muscatine, Scott, Dubuque, Polk, Blackhawk, Woodbury and Webster.

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.

The Strategic Environmental Assessment Directive: A Potential Lever for Independent Regulation in Northern Ireland?

Accepted for publication - will appear in advance view JEL and hard copy publication in (2012) Vol 24(2).