Advance care planning by proxy in German nursing homes: Descriptive analysis and policy implications.

BACKGROUND: Legally recognized advance directives (ADs) have to be signed by the person to whom the decisions apply. In practice, however, there are also ADs written and signed by legal proxies (surrogates) on behalf of patients who lack decision-making capacity. Given their practical relevance and substantial ethical and legal implications, ADs by proxy (AD-Ps) have received surprisingly little scientific attention so far. OBJECTIVES: To study the form, content, validity, and applicability of AD-Ps among German nursing home residents and develop policy implications. METHODS: Secondary analysis of two independent cross-sectional studies in three German cities, comprising 21 nursing homes and 1528 residents. The identified AD-Ps were analyzed in parallel by three independent raters. Inter-rater agreement was measured using free-marginal multi-rater kappa statistics. RESULTS: Altogether, 46 AD-Ps were identified and pooled for analysis. On average (range), AD-Ps were 1 (1-7) year(s) old, 0.5 (0.25-4) pages long, signed by 1 (0-5) person, with evidence of legal proxy involvement in 35%, and signed by a physician in 20% of cases. Almost all the AD-Ps reviewed aimed to limit life-sustaining treatment (LST), but had widely varying content and ethical justifications, including references to earlier statements (30%) or actual behavior (11%). The most frequent explicit directives were: do-not-hospitalize (67%), do-not-tube-feed (37%), do-not-attempt-resuscitation (20%), and the general exclusion of any LST (28%). Inter-rater agreement was mostly moderate (kappa ≥0.6) or strong (kappa ≥0.8). CONCLUSIONS: Although AD-Ps are an empirical reality in German nursing homes, formal standards for such directives are lacking and their ethical justification based on substituted judgment or best interest standard often remains unclear. A qualified advance care planning process and corresponding documentation are required in order to safeguard the appropriate use of this important instrument and ensure adherence to ethico-legal standards.

In This Together: Navigating Ethical Challenges Posed by Family Clustering during the Covid-19 Pandemic.

Harrowing stories reported in the media describe Covid-19 ravaging through families. This essay reports professional experiences of this phenomenon, family clustering, as encountered during the pandemic's spread across Southern California. We identify three ethical challenges following from it: Family clustering impedes shared decision-making by reducing available surrogate decision-makers for incapacitated patients, increases the emotional burdens of surrogate decision-makers, and exacerbates health disparities for and the suffering of people of color at increased likelihood of experiencing family clustering. We propose that, in response to these challenges, efforts in advance care planning be expanded, emotional support offered to surrogates and family members be increased, more robust state guidance be issued on ethical decision-making for unrepresented patients, ethics consultation be increased in the setting of conflict following from family clustering dynamics, and health care professionals pay more attention to systemic and personal racial biases and inequities that affect patient care and the surrogate experience.

Living will legislation: between advance healthcare directives and advance care planning, which is the better way to go.

Following drawn out, contentious parliamentary deliberations, the Italian legislature has enacted bill n.219/17, meant to regulate advance healthcare directives. The letter's authors are critical of some key aspects relative to advance directives, contending that it would be preferable to opt for advance care planning, which enables already severely ill patients who are fully aware of the consequences of their disease to choose what therapeutic pathway to undertake.

Derecho sociosanitario, voluntad vital anticipada y muerte digna en España: un análisis a la situación jurídico-sanitaria actual desde el Trabajo Social / Socio-health law, living will and dignified death in Spain: an analysis of the current legal-health situation from the Social Work

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The Medical Treatment Planning and Decisions Act 2016: what is the role for allied health professionals?

Advance care planning is increasingly common practice in contemporary health care for individuals living with a chronic condition. Currently, limited research has been conducted into how newly adopted legislation in Victoria, Australia, facilitates advance care planning. The purpose of this study was to explore the uptake of the Medical Treatment Planning and Decisions Act 2016 in the primary care setting. The study also aimed to explore barriers that allied health professionals encounter when practicing advance care planning with patients. Four interdisciplinary focus groups and two in-depth interviews with participants were conducted and thematically analysed using an interpretivist inquiry paradigm. Analysis revealed two key themes: promoting client wellbeing and scope of practice. The data suggest that advance care planning by allied health professionals in the primary care setting is limited. Focussing on enhancing clients' wellbeing was more important than the development of advanced care directives. Attempting to promote the wellbeing of patients may foster hesitation to commence advance care planning in primary care. This study demonstrated that knowledge of the fundamental legislative changes are evident among allied health professionals which provides a foundation for successful development of advance care planning post implementation of the new Act.

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.

Influence of clinical context on interpretation and use of an advance care planning policy: a qualitative study.

BACKGROUND: Advance care planning is a process through which people share their values, goals and preferences regarding future medical treatments with the purpose of aligning care received with patient wishes. The objective of this study was to explore perspectives from patients and clinicians in 4 clinical settings to understand how context influences interpretation and application of advance care planning processes. METHODS: This study used a qualitative interpretive descriptive design. Patient and clinician participants were recruited across 4 clinical outpatient settings (cancer, heart failure, renal failure and supportive living) in Calgary and Edmonton. Data were collected between 2014 and 2015 by means of recorded one-on-one semistructured interviews. We analyzed the data using thematic analysis in 2016-2017. RESULTS: Thirty-four patients and 34 clinicians participated in interviews. Themes common to all 4 contexts were lack of shared understanding between patients and clinicians, and a lack of consistent clinical process related to advance care planning. Advance care planning understanding and process varied substantially between contexts. This variation seemed to be driven by differences in perceptions around disease burden and the nature of the physician-patient relationship. INTERPRETATION: Provision of a system-wide policy and procedural framework alone was not found to be sufficient to form a standardized approach to advance care planning, as considerable variability existed in advance care planning process between and within clinical settings. Quality-improvement methods that consider local processes, gaps and barriers can help in developing a consistent, comprehensive process.

Improving Advanced Care Planning through Physician Orders for Life-Sustaining Treatment (POLST) Expansion across the United States: Lessons Learned from State-Based Developments.

BACKGROUND: The Physician Orders for Life-Sustaining Treatment (POLST) Paradigm is an effective advance care planning tool. However, barriers to implementation persist. In the United States, POLST program development occurs at the state-level. Substantial differences between states has left POLST implementation largely unstandardized. No peer-reviewed studies to date have evaluated state-based POLST program development over time. OBJECTIVE: To assess and learn from the successes and barriers in state-based POLST program development over time to improve the reach of POLST or similar programs across the United States. DESIGN: An exploratory, prospective cohort study that utilized semistructured telephone interviews was conducted over a 3-year period (2012-2015). Stakeholder representatives from state POLST coalitions (n = 14) were repeatedly queried on time-relevant successes, barriers, and innovations during POLST program development with levels of legislative and medical barriers rated 1 to 10. Interviews were transcribed and analyzed using techniques grounded in qualitative theory. RESULTS: All coalition representatives reported continuous POLST expansion with improved outreach and community partnerships. Significant barriers to expansion included difficulty in securing funding for training and infrastructure, lack of statewide metric systems to adequately assess expansion, lack of provider support, and legislative concerns. Medical barriers (mean [standard deviation]: 5.0 [0.2]) were rated higher than legislative (3.0 [0.6]; P < .001). CONCLUSION: POLST programs continue to grow, but not without barriers. Based on the experiences of developing coalitions, we were able to identify strategies to expand POLST programs and overcome barriers. Ultimately the "lessons learned" in this study can serve as a guide to improve the reach of POLST or similar programs.

The Underappreciated Role of Advance Directives: How the Pandemic Revitalises Advance Care Planning Actions.

Covid-19 continues to alter our way of living and dying. Much attention has focused on how to resolve pressing issues surrounding resource allocation and competing public health ethics. While these are important discussions, the legal and ethical dilemmas of treatment decisions remain highly critical. The urgency to ensure that life and death affairs are in order is magnified due to the possibility of becoming infected with Covid-19. However, many people continue to face challenges in organising their future medical care and treatment. This article explores how the pandemic affects advance care planning through the lenses of law and ethics. The range of Covid-19 implications on advance care planning demonstrates a paradigm shift from a primarily elective function to an essential role in healthcare delivery. This renewed appreciation to advance care planning offers the opportunity to support and sustain the important role that it could play during ordinary and extraordinary times.

Ethical and Legal Considerations in End-of-Life Care.

In caring for dying patients, family medicine practitioners intentionally adopt care plans that affect the manner and timing of death. These decisions are morally weighty. This article provides guidance regarding the ethical and legal appropriateness of practitioner decisions near the end of life. Topics include surrogate decision making, advance care planning, medical nutrition and hydration, double effect, futile care, physician-assisted death, voluntarily stopping eating and drinking, palliative sedation to unconsciousness, and cultural humility.

Advance decision-making in mental health - Suggestions for legal reform in England and Wales.

This paper argues that existing English and Welsh mental health legislation (The Mental Health Act 1983 (MHA)) should be changed to make provision for advance decision-making (ADM) within statute and makes detailed recommendations as to what should constitute this statutory provision. The recommendations seek to enable a culture change in relation to written statements made with capacity such that they are developed within mental health services and involve joint working on mental health requests as well as potential refusals. In formulating our recommendations, we consider the historical background of ADM, similarities and differences between physical and mental health, a taxonomy of ADM, the evidence base for mental health ADM, the ethics of ADM, the necessity for statutory ADM and the possibility of capacity based 'fusion' law on ADM. It is argued that the introduction of mental health ADM into the MHA will provide clarity within what has become a confusing area and will enable and promote the development and realisation of ADM as a form of self-determination. The paper originated as a report commissioned by, and submitted to, the UK Government's 2018 Independent Review of the Mental Health Act 1983.

Advance Care Planning in Rural Montana: Exploring the Nurse's Role.

It is recommended that advance care planning take place across the lifespan. Rural populations have a heightened risk for poor quality and high cost of end-of-life care. A doctoral project was completed to assess rural nurses' knowledge, attitudes, and experiences with advance directives using the Knowledge, Attitudinal, and Experimental Surveys on Advance Directives. Descriptive statistics were used for analysis. Participants were nurses who practice in rural settings (N = 22). The average age was 46.4 years; all were white (n = 22), and the majority were baccalaureate prepared (n = 12). Practice settings were primarily in home care and hospice. Knowledge scores on advance directives were low (57%). Nurses felt confident in counseling and initiating discussions with patients and families. Less than one-half of the nurses reported they feel part of the advance care planning team. The majority reported advance directive resources and mentorship of younger nurses would be beneficial and indicated the need for additional education, training, knowledge, time, and support to better assist with advance care planning. Project results and recommendations were presented to the participating health care organization. Recommendations included workplace education, support, mentorship, resources, and education on cultural sensitivity using the rural nursing theory.

Medical-Legal Partnerships to Enhance Residency Training in Advance Care Planning.

BACKGROUND AND OBJECTIVES: Only about one-third of adult Americans have completed advance directives for end-of-life care, and primary care physicians report that they are not always comfortable discussing advance care planning (ACP) with patients. Current approaches to teaching clinicians about ACP have limited evidence of effectiveness. With the objective of improving residents' comfort and skill discussing ACP with patients, we developed a curriculum that involved clinicians and attorneys working together to teach first-year family medicine residents (R1) about leading ACP discussions with patients. METHODS: Our curriculum consisted of a 1-hour multimedia training session on ACP followed by a series of direct in-exam room observations. Attorney and/or physician faculty observed residents holding ACP discussions with patients and provided structured feedback to residents about their performance. The initial R1 cohort observed had a series of three direct observations; the subsequent R1 cohort had two direct observations. We developed an evaluation tool with a 5-point developmental scale (beginner, novice, developing, near mastery, mastery) corresponding to the Accreditation Council for Graduate Medical Education's milestone system to score residents' performance. RESULTS: R1 performance improved from the beginner/novice level during the first observed ACP discussion to the novice/developing level during the second or third discussion, representing an increase in competence to that expected of a second- or early third-year resident. CONCLUSION: Based on our initial experience, using medical-legal partnerships to teach residents about ACP may be more effective than previously reported approaches. Validation of our results with a larger sample is needed.

Management of patients with an advance decision and suicidal behaviour: a systematic review.

BACKGROUND: The use of advance care planning and advance decisions for psychiatric care is growing. However, there is limited guidance on clinical management when a patient presents with suicidal behaviour and an advance decision and no systematic reviews of the extant literature. OBJECTIVES: To synthesise existing literature on the management of advance decisions and suicidal behaviour. DESIGN: A systematic search of seven bibliographic databases was conducted to identify studies relating to advance decisions and suicidal behaviour. Studies on terminal illness or end-of-life care were excluded to focus on the use of advance decisions in the context of suicidal behaviour. A textual synthesis of data was conducted, and themes were identified by using an adapted thematic framework analysis approach. RESULTS: Overall 634 articles were identified, of which 35 were retained for full text screening. Fifteen relevant articles were identified following screening. Those articles pertained to actual clinical cases or fictional scenarios. Clinical practice and rationale for management decisions varied. Five themes were identified: (1) tension between patient autonomy and protecting a vulnerable person, (2) appropriateness of advance decisions for suicidal behaviour, (3) uncertainty about the application of legislation, (4) the length of time needed to consider all the evidence versus rapid decision-making for treatment and (5) importance of seeking support and sharing decision-making. CONCLUSIONS: Advance decisions present particular challenges for clinicians when associated with suicidal behaviour. Recommendations for practice and supervision for clinicians may help to reduce the variation in clinical practice.

Tracey judgement and hospice DNACPR orders: steady as she goes or seismic change?

OBJECTIVES: The 2014 Court of Appeals decision with respect to Tracey vs Cambridge University Hospital ('the Tracey judgement') changed the requirements for discussing Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) decisions with patients. This study is a retrospective case note review aiming to identify any changes in practice around discussing DNACPR decisions in hospices following the judgement. METHODS: 150 case notes from 2013 (before the Tracey judgement) were compared with 150 case notes from 2015 (following the Tracey judgement). These notes came from five hospices in the West Midlands. The notes were analysed to determine if the judgement resulted in changes to how frequently DNACPR decisions were discussed with patients and their families, as well as whether there were any changes in the documentation of reasons for not discussing such decisions. RESULTS: Discussions with patients around DNACPR decisions increased from 31% to 60% and with relatives from 29% to 59% following the Tracey judgement. Prior to the judgement the most frequently documented reason for not discussing was to avoid distress (23%), whereas after judgement it was patients lacking capacity to engage in such a discussion (40%). There was a lack of consistency and clarity in defining the concept of 'physical or psychological harm'. CONCLUSIONS: Although DNACPR decisions are being discussed more frequently with patients and families following the Tracey judgement, clarity on what constitutes 'physical or psychological harm' caused by these discussions is still required. Future research must examine whether the judgement is delaying or preventing DNACPR decisions being made.

Advance Care Planning in Community: An Evaluation of a Pilot 2-Session, Nurse-Led Workshop.

BACKGROUND:: Engaging patients in advance care planning (ACP) is challenging but crucial to improving the quality of end-of-life care. Group visits and multiple patient-clinician interactions may promote advance directive (AD) completion. OBJECTIVE:: Facilitate ACP discussions with patients and caregivers and the creation of notarized AD's at a comprehensive cancer center. DESIGN:: Two-session, nurse-led ACP workshops for patients and their family caregivers. SETTING/PARTICIPANTS:: The workshop was offered to patients with cancer at a comprehensive cancer center and their family caregivers. MEASUREMENTS:: Validated 4-question ACP engagement survey, creation of a notarized AD by end of the workshop, and semistructured interviews. RESULTS:: Thirty-five patients participated in 10 workshops held March 2017 to February 2018. Median age was 52. Of 35, 24 (68.5%) patients completed pre- and postworkshop evaluation surveys. Mean preworkshop ACP readiness was 3.64 of 5; postworkshop readiness increased to 4.26 of 5 ( P = .001). Of 26, 17 (65.4%) of the patients who attended both workshop sessions had a new notarized AD scanned into the electronic medical record at the completion of the workshop series. Three family caregivers completed and had their own ADs notarized. Patient and family member response was overwhelmingly positive, with participants citing opportunities for group discussion and inclusion of family caregivers as important. CONCLUSIONS:: The ACP workshop was well received by participants and increased ACP readiness, discussion, and completion. Attendance at the workshop was low and barriers to attending workshops must be explored.

Implementation of Advance Care Planning in Israel: A Convergence of Top-Down and Bottom-Up Processes.

Although public health has traditionally been concerned with primary, secondary, and tertiary prevention, more attention needs to be focused on patient-centered care at the end of life. Improved access to quality end-of-life care can be achieved by advance care planning (ACP). In this article, we present an example of the processes of change regarding ACP and preparing advance directives (ADs) that have begun to take place in Israel in recent years. We argue that these processes derive from the synergy between legislation on the one hand, and initiatives and action by health organizations on the other. In other words, top-down action such as legislation and directives issued by the Ministry of Health in the past decade, alongside bottom-up action in the health plans and other organizations, have led to change that could not have happened without either side. In the first part of the article, we present Israel's Dying Patient Act and its ensuing amendments and in the second part, we present examples of activities in the health services. In the third part of the article, we discuss the argument that it is only thanks to the combination of top-down and bottom-up action that a breakthrough has been achieved.