Revisiting the Role of Health Care Proxies in Reproductive Choice.

In an effort to protect patients' reproductive rights, many states prohibit health care proxies from serving as surrogate decision makers for pregnancy termination in patients who lack capacity. We explore the case of a 24-year-old developmentally delayed woman with intractable seizures and complex psychosocial needs who was found to be pregnant. Her older sister was her health care proxy and declared that an abortion would be in her best interest, medically and socially; the patient herself lacked capacity to make this decision. Legally, her sister's judgment alone was insufficient to move forward with the procedure. Here we describe our multidisciplinary medical, ethical, and legal review of this case and how, despite agreeing with the patient's sister, legal barriers hindered our ability to obtain an abortion for this patient. Her situation illustrates the unintended consequences of our current approach to surrogate decision making in pregnancy termination. It highlights the need to reconsider the role of health care proxies in reproductive-choice decisions and emphasizes the value of a holistic evaluation of patients' social circumstances.

When Does A Minor's Legal Competence To Make Health Care Decisions Matter?

In this article, I examine the role of minors' competence for medical decision-making in modern American law. The doctrine of parental consent remains the default legal and bioethical framework for health care decisions on behalf of children, complemented by a complex array of exceptions. Some of those exceptions vest decisional authority in the minors themselves. Yet, in American law, judgments of minors' competence do not typically trigger shifts in decision-making authority from adults to minors. Rather, minors' decisional capacity becomes relevant only after legislatures or courts determine that the default of parental discretion does not achieve important policy goals or protect implicated constitutional rights in a particular health care context and that those goals can best be achieved or rights best protected by authorizing capable minors to choose for themselves. It is at that point that psychological and neuroscientific evidence plays an important role in informing the legal inquiry as to whether minors whose health is at issue are legally competent to decide.

Informed consent procedures in patients with an acute inability to provide informed consent: Policy and practice in the CENTER-TBI study.

PURPOSE: Enrolling traumatic brain injury (TBI) patients with an inability to provide informed consent in research is challenging. Alternatives to patient consent are not sufficiently embedded in European and national legislation, which allows procedural variation and bias. We aimed to quantify variations in informed consent policy and practice. METHODS: Variation was explored in the CENTER-TBI study. Policies were reported by using a questionnaire and national legislation. Data on used informed consent procedures were available for 4498 patients from 57 centres across 17 European countries. RESULTS: Variation in the use of informed consent procedures was found between and within EU member states. Proxy informed consent (N = 1377;64%) was the most frequently used type of consent in the ICU, followed by patient informed consent (N = 426;20%) and deferred consent (N = 334;16%). Deferred consent was only actively used in 15 centres (26%), although it was considered valid in 47 centres (82%). CONCLUSIONS: Alternatives to patient consent are essential for TBI research. While there seems to be concordance amongst national legislations, there is regional variability in institutional practices with respect to the use of different informed consent procedures. Variation could be caused by several reasons, including inconsistencies in clear legislation or knowledge of such legislation amongst researchers.

Health Care Surrogacy Laws Do Not Adequately Address the Needs of Minors.

A couple and their five-year-old daughter are in a car accident. The parents are not expected to survive. The child is transported to a children's hospital, and urgent treatment decisions must be made. Whom should the attending physician approach to make decisions for the child? When such cases arise in, for example, the hospitals where we work, the social worker or chaplain is instructed to use the Illinois Health Care Surrogacy Act as a guidepost to identify a decision-maker. But in our state and the country overall, the limitations of such statutes leave hospital workers to make a judgment call among friends, family, and clergy who may come forward. While surrogate decision-making statutes comprehensively address surrogate decision-makers for adults, a patchwork of laws-permanency statutes, kinship provider statutes, standby guardianship statutes, and, in some cases, surrogate decision-making statutes-provide variable decision-making pathways for children.

Deciding For When You Can't Decide: The Medical Treatment Planning and Decisions Act 2016 (Vic).

The Australian state of Victoria introduced new legislation regulating medical treatment and associated decision-making in March 2018. In this article we provide an overview of the new Medical Treatment Planning and Decisions Act 2016 (Vic) and compare it to the former (now repealed) Medical Treatment Act 1988 (Vic). Most substantially, the new Act provides for persons with relevant decision-making capacity to make decisions in advance regarding their potential future medical care, to take effect in the event they themselves do not have decision-making capacity. Prima facie, the new Act enshrines autonomy as the pre-eminent value underlying the state's approach to medical treatment decision-making and associated surrogate decision-making. However, we contend that the intention of the Act may not accord with implementation of the Act to date if members of the community are not aware of the Act's provisions or are not engaged in advance care planning. There is a need for further research, robust community advocacy, and wider engagement for the intention of the Act-the promotion of "precedent autonomy" in respect to surrogate medical treatment decision-making-to be fully realized.

Exploring Quality of Life in End-of-Life Discussions.

Advance directives (ADs) allow individuals to legally determine their preferences for end-of-life (EOL) medical treatment and designate a health-care proxy to act on their behalf prior to losing the cognitive ability to make informed decisions for themselves. An interprofessional group of researchers (law, nursing, medicine, and social work) conducted an exploratory study to identify the differences in quality-of-life (QOL) language found within the AD state statutes from 50 US states and the District of Columbia. Data were coded using constant comparative analysis. Identified concepts were grouped into 2 focus areas for EOL discussions: communication/awareness of surroundings and activities of daily living. Language regarding communication/awareness of surroundings was present in the half of the statutes. Activities of daily living were addressed in only 18% of the statutes. Only 3 states (Arkansas, Nevada, and Tennessee) specifically addressed QOL. Patients are best served when professionals, regardless of discipline, can share and transform knowledge for patients in times of crisis and loss in ways that are empathetic and precise. Interprofessional collaborative practice (IPCP) comprises multiple health workers from different professional backgrounds working together with patients, families, and communities to deliver the highest quality of care. One of the major competencies of IPCP encompasses values and ethics. Interprofessional collaborative practice is offered as the means to deliver person-centered value-based care when facilitating these crucial dialogs and making recommendations for change.

Research involving adults lacking capacity to consent: a content analysis of participant information sheets for consultees and legal representatives in England and Wales.

BACKGROUND: Research involving adults who lack the capacity to provide informed consent can be challenging. In England and Wales there are legal provisions for consulting with others who know the person with impaired capacity. The role of the 'proxy' (or 'surrogate') is to advise researchers about the person's wishes and feelings or to provide consent on the person's behalf for a clinical trial of a medicine. Information about the study is usually provided to the proxy; however, little information is available to proxies about their role, or the appropriate legal and ethical basis for their decision, to help inform their decision-making. The aim of this study was to analyse the written information that is provided to consultees and legal representatives. METHODS: Studies including adults lacking capacity to consent which utilised consultees or legal representatives were identified using the UK Clinical Trials Gateway database. A representative sample (n = 30) were randomly selected. Information sheets and other study documents provided to proxies were obtained, and relevant content was extracted. Content analysis was conducted through four stages: decontextualisation of the unit of analysis, recontextualisation, categorisation, and compilation. The data were summarised narratively according to each theme and category. RESULTS: Considerable variation was found in the written information sheets provided to proxies. Most directed proxies to consider the wishes and feelings of the person who lacked capacity and to consult with others during the decision-making process. However, a small number of studies extended the scope of the proxy's role to consider the person's suitability or eligibility for the study. Particular discrepancies were found in information provided to those acting as consultees or legal representatives in a professional, as opposed to a personal, capacity. Incorrect uses of terminology were frequently found, and a small number of studies inaccurately interpreted the law. CONCLUSIONS: Despite undergoing ethical review, study documents lacked essential information, incorrectly used terminology, and conflated professionals' clinical and representation roles. Future recommendations include ensuring proxies are provided with adequate and accurate information which complies with the legal frameworks. Further research is needed to explore the information and decision-making needs of those acting as consultees and legal representatives.

[The Physician's advance directives.] / Le dichiarazioni anticipate di un medico.

On December 2017 the Italian Parliament approved the law n. 219/2017 on the advance directives (ADs) and the appointment of a health care proxy (HCP). The law has been considered as a civil conquest for defending the rights of sick people. At the same time the literature shows that a low proportion of patients have a written ADs document before admission to the hospital; when available, the ADs do not guarantee consistency between the received treatments and patient wishes; ADs exert little influence in regard to forgo treatments, withholding or withdrawing them; they are static compared with the dynamic nature of diseases and, therefore, so they are unable to consider all complications. Thus, a useful way for drafting an ADs document probably should not focus attention on specific treatments or outcomes, but, rather, it should supply doctors with the patient's scale of values so that they can use it as a border within which they are free to decide case by case what to do for the patient's best interest, accordingly with the evidence, their experience, letting the HCP to represent the patient's preferences and wills in relation to each specific situation, balancing benefits and burdens. This story shows that the ADs are far from being a simple means for facing with the illness, representing instead a strong call to ethical reflection intended as a tool to argue in a fully responsible way about the care choices and their consequences. In this case, it is evident that the success of this law will depend on the cultural evolution that people will be able to achieve.

Fiduciary Activities. Final rule.

The Department of Veterans Affairs (VA) amends its fiduciary program regulations, which govern the oversight of beneficiaries, who because of injury, disease, or age, are unable to manage their VA benefits, and the appointment and oversight of fiduciaries for these vulnerable beneficiaries. The amendments will update and reorganize regulations consistent with current law, VA policies and procedures, and VA's reorganization of its fiduciary activities. They will also clarify the rights of beneficiaries in the program, and the roles of VA and fiduciaries in ensuring that VA benefits are managed in the best interest of beneficiaries and their dependents. The amendments to this rulemaking are mostly mandatory to comply with the law. They are also in line with the law's goals to streamline and modernize the fiduciary program and process. These amendments by Congress, reduce unnecessary regulations, streamline and modernize processes, and improve services for Veterans. Furthermore, VA is unable to alter proposed amendments that directly implement mandatory statutory provisions.

Colorado's New Proxy Law Allowing Physicians to Serve as Proxies: Moving from Statute to Guidelines.

In 2016, the Colorado legislature passed an amendment to Colorado's medical proxy law that established a process for the appointment of a physician to act as proxy decision maker of last resort for an unrepresented patient (Colorado HB 16-1101: Medical Decisions For Unrepresented Patients). The legislative process brought together a diverse set of stakeholders, not all of whom supported the legislation. Following passage of the statutory amendment, the Colorado Collaborative for Unrepresented Patients (CCUP), a group of advocates responsible for initiating the legislative process, coordinated a unique effort to engage these stakeholders in the creation of a set of voluntary guidelines to assist facilities and individual careproviders in the implementation of policies and procedures enabled by the statute. This article delineates the questions and concerns of stakeholders, describes how those issues were addressed within the guidelines, and proposes additional opportunities for research to assess the impact of the legislation in Colorado.

Making medical decisions for an incompetent older adult when both a proxy and an advance directive are available: which is more likely to reflect the older adult's preferences?

OBJECTIVES: To investigate which of two sources of information about an older adult's wishes-choices made in an advance directive or proxy's opinion-provides better insight into the older adult's preferences measured in hypothetical clinical situations involving decisional incapacity. METHODS: Secondary analyses of data collected from 157 community-dwelling, decisionally competent adults aged 70 years and over who attended a group information session on advance directives with their proxy. Older adults were invited to complete a directive introduced during the session, designed to express healthcare preferences. An average of 3 months later, older adults were asked during an interview whether they would want to receive each of four medical interventions and what their goals of care would be should they develop one of three sudden health events, assuming that they had severe dementia. Proxies were asked to guess the older adult's answers in each of the seven scenarios. RESULTS: Eighty per cent of the older adults completed the directive. Choices they made in the directive were more in line with the preferences they stated during the interview than were their proxies' guesses at their answers. However, concordance was relatively low, with percentages of agreement ranging from 43% to 83% across scenarios. CONCLUSIONS: Findings suggest that a directive might provide better insight into a person's wishes than the person's proxy, although neither source is perfect. A multifaceted decision-making model that includes both sources of information might better serve the interests of older adults who have lost the capacity to make decisions on their own. TRIAL REGISTRATION NUMBER: ISRCTN89993391; Post-results.

Australian doctors' knowledge of and compliance with the law relating to end-of-life decisions: implications for LGBTI patients.

In most developed countries, competent patients have the legal right to refuse any medical treatment; Advance Care Planning mechanisms extend this right to non-competent patients. However, some groups, including lesbian, gay, bisexual, transgender and intersex (LGBTI) people, risk their wishes not being respected if they lose capacity, more than others. Little is known about medical practitioners' knowledge of, or attitudes to, the law in this area, especially in relation to LGBTI people, or how the law influences their decision-making. An Australian postal survey explored knowledge and attitudes of medical specialists to legal issues relating to withdrawing/ withholding life-sustaining treatment from adults without capacity. One scenario (the focus of this paper) asked which of four plausible substitute decision-makers, including a same-sex partner, had the legal authority to make such decisions. The overall response rate was 32% (867/2702). Less than one-third of respondents correctly identified the same-sex partner as the legally authorised decision-maker. LGBTI people face multiple obstacles to having their end-of-life wishes respected. Where healthcare providers are also ignorant of the partner's legal right to make such decisions, the problem is compounded. Improved legal education for clinicians and promotion of educational resources for members of the LGBTI community is needed.

Awake and (Only Just) Aware? A Typology, Taxonomy, and Holistic Framework for Withdrawing Clinically Assisted Nutrition and Hydration in the Minimally Conscious State.

Decisions to withdraw clinically assisted nutrition and hydration (CANH) from people in the minimally conscious state are predicated on the question as to whether it is in the individual's best interests to continue with CANH and determined traditionally using a 'balance sheet' approach. The emerging case law in this area suggests that decisions may appear inconsistent and lack sufficient certainty and clarity of process. Using an analysis of statute, common law and academic commentary we articulate a typology for the elements that tend to engage in these decisions. Next, we construct a taxonomy of overarching legal and ethical issues and then proceed to develop a novel framework for holistic decision-making. We validate this on the principle upon which it is grounded: coherent weighting of elements and theoretical proof of concept. The framework has potentially far-reaching benefits that include consistency and transparency of decision-making, thereby enabling a more uniform judicial approach. We suggest this as a foundational paradigm for decision-making in this context.

End-of-life decision making for persons with dementia: Proxies' perception of support.

Healthcare proxies need support in making end-of-life decisions for persons with dementia (PWD). This study explored perceptions of support in decision making among proxies of PWD through semi-structured interviews with 20 proxies. Thematic analysis identified three sources of support: family, doctors, and religiosity/spirituality. Family's engagement in care discussions and support for proxies' decisions were viewed helpful while disagreement or criticism, combined with lack of knowledge about PWD's condition and needs, were not. Doctors were viewed supportive when proxies felt doctors respected their opinions and PWD's wishes. Doctor-PWD rapport influenced proxies' views of medical advice from doctors. Although religiosity/spirituality provided guidance and hope, it also presented conflicts when PWD's wishes differed from proxies' beliefs. Therefore, families of PWD should be provided with assistance in reconciling or mediating family conflicts and further education about the illness trajectory as well as risks/benefits of life-sustaining treatments. Assistance should also be provided to address religious/spiritual conflicts.

[Advance directive of probands in pharmaceutical research : A medical ethics discussion]. / Probandenverfügung in der Arzneimittelforschung : Eine medizinethische Diskussion.

In the fourth Act on the amendment of pharmaceutical legal and other regulations in November 2016, the legislature has designated the proband advance directive based on the instrument of patient advance directive to enable group beneficial research with persons not capable of giving consent. This article describes the existing conditional need for group beneficial research and presents the problem of the decisive instrument for advance directives at the center of the considerations. The features of the proband advance directive concluded by the legislature stand in opposition to a successful implementation, particularly due to the necessary concrete clarification content far in advance for informed research participants. This article describes solution possiblities, which refer to the realization of the instrument of a proxy research authorization as well as the consideration of an advance research planning based on the advance care planning.