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.

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an overview of the new Medical Treatment Planning and Decisions Act 2016 (Vic) and compare it to the former (now repealed) Medical Treatment Act 1988 (Vic).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.

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.

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.

Advanced Directives and Advanced Care Planning for Healthcare Professionals.

The purposes of this study were to assess healthcare professionals' need for information on advanced directives and to implement and evaluate an educational plan for change in knowledge and behaviors related to advanced directives. End-of-life (EOL) care is an important topic for patients to discuss with their families and healthcare professionals (HP). Needs assessment data were collected from healthcare providers at an urban trauma intensive care unit (ICU) in Louisville, Kentucky on concepts related to end-of-life. Next, healthcare professionals participated in an educational intervention focused on: knowledge about advanced directives; communication techniques for healthcare professionals to use with patients and their families; awareness of the patient's level of illness in advanced care planning; and specifics about living wills in Kentucky and how to complete one. Pre- and post-test data were collected to evaluate change in knowledge, capability an average of 8.7 years (SD = 9.1; range = 1.9-35 years) in healthcare and worked an average of 8.4 years (SD = 9.3; range = 4 months to 35 years) in their respective ICUs. Eighty-seven percent did not have an AD in place even though their perceived knowledge about AD remained moderate throughout pre- and post-test scores (3.3 to 3.8 on a 5 point scale, respectively). Total post-test scores revealed a 2% improvement in correct responses. These findings point to the need for education of healthcare providers in the ICU to increase early AD and ACP discussions with patients and their families.

Medicare and Advance Planning: The Importance of Context.

In January 2016, a long-delayed Medicare change took effect. The Medicare program will now reimburse doctors for time they spend talking with patients about end-of-life care. This is the move that Sarah Palin and other Affordable Care Act critics said would authorize government "death panels" to decide whether older Americans should live or die. Today virtually no one buys into Palin's death panel rhetoric. But many people do think the Medicare change is a big deal. Representative Earl Blumenauer, a Democrat from Oregon who sponsored the original ACA reimbursement proposal, lauded the Medicare provision as "a turning point in end-of-life care." Others are not so sure about that. After all, laws promoting advance care planning have existed for decades. The federal Patient Self-Determination Act of 1990 and the many court decisions and state laws supporting advance care planning have had relatively little impact. Similarly, legal recognition of physician orders for life-sustaining treatment as advance planning instruments have not produced the improvements that were predicted. And from a broad perspective, advance care planning is a small piece of the puzzle. The effort to improve end-of-life care must take into account the limitations of advance decision-making, as well as the overriding importance of the general standard of care for terminally ill patients.

Legal Briefing: Medicare Coverage of Advance Care Planning.

This issue's "Legal Briefing" column covers the recent decision by the Centers for Medicare and Medicaid Services (CMS) to expand Medicare coverage of advance care planning, beginning 1 January 2016. Since 2009, most "Legal Briefings" in this journal have covered a wide gamut of judicial, legislative, and regulatory developments concerning a particular topic in clinical ethics. In contrast, this "Legal Briefing" is more narrowly focused on one single legal development. This concentration on Medicare coverage of advance care planning seems warranted. Advance care planning is a frequent subject of articles in JCE. After all, it has long been seen as an important, albeit only partial, solution to a significant range of big problems in clinical ethics. These problems range from medical futility disputes to decision making for incapacitated patients who have no available legally authorized surrogate. Consequently, expanded Medicare coverage of advance care planning is a potentially seismic development. It may materially reduce both the frequency and severity of key problems in clinical ethics. Since the sociological, medical, and ethical literature on advance care planning is voluminous, I will not even summarize it here. Instead, I focus on Medicare coverage. I proceed, chronologically, in six stages: 1. Prior Medicare Coverage of Advance Care Planning 2. Proposed Expanded Medicare Coverage in 2015 3. Proposed Expanded Medicare Coverage in 2016 4. The Final Rule Expanding Medicare Coverage in 2016 5. Remaining Issues for CMS to Address in 2017 6. Pending Federal Legislation.

Desperately seeking a surrogate - for a patient lacking decision-making capacity.

Our hospital's policy and procedures for "Patients Without Surrogates" provides for gradated safeguards for managing patients' treatment and care when they lack decision-making capacity, have no advance directives, and no surrogate decision makers are available. The safeguards increase as clinical decisions become more significant and have greater consequences for the patient. The policy also directs social workers to engage in "rigorous efforts" to search for surrogates who can potentially provide substituted judgments for such patients. We describe and illustrate the policy, procedures, and kinds of expected rigorous efforts through our narration of an actual but disguised case for which we provided clinical ethics guidance and social work expertise. Our experience with and reflection on this case resulted in four recommendations we make for health care facilities and organizations that aim to provide quality care for their own patients without surrogates.

Death, taxes and advance directives.

Suboptimal care at the end-of-life can be due to lack of access or knowledge of patient wishes. Ambiguity is often the result of non-standardized formats. Borrowing digital technology from other industries and using existing health information infrastructure can greatly improve the completion, storage, and distribution of advance directives. We believe several simple, low-cost adaptations to regional and federal programs can raise the standard of end-of-life care.

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.

The POLST paradigm for patients with advanced, irreversible illness: a therapeutic jurisprudence basis for legal codification.

The Physician Orders for Life Sustaining Treatment (POLST) Paradigm attempts to improve the experiences of individuals with serious, irreversible illness, and their families. In some jurisdictions, the POLST is authorized in law. In other jurisdictions, efforts are underway or contemplated to encourage use of POLST for appropriate individuals, but the concept is not yet in law. An argument needs to be made to policymakers that POLST will have a therapeutic effect on patients and families. In making that argument, the analytical lens of therapeutic jurisprudence (TJ) may be useful. This article proposes a POLST legal strategy using TJ. TJ may be used to evaluate data regarding psychological effects on patients and families who are experiencing medical care with or without POLST; the TJ analysis then should be considered by policymakers in enacting POLST laws to codify clinical consensus, and in turn the law so enacted would exert a positive impact on therapeutic benefit-producing behavior by health care providers.