Hospice Nurse Ethics and Institutional Policies Toward Medical Aid in Dying.

ABSTRACT: A significant number of hospices in U.S. jurisdictions where medical aid in dying is legal have implemented policies that require nurses to leave the room when a patient ingests aid-in-dying medication. Two questions with ethical implications arise from these policies: (1) Is it ethically supportable for a hospice to require that staff leave the room while a patient ingests aid-in-dying medication? and (2) Does this requirement compromise the nurse's professional commitment to the patient and family?This article reviews the origins of this common policy, as well as nursing codes of ethics and professional organization policy statements as they relate to nursing commitments to patients. It finds that an institutional policy requiring nurses to leave the room while a patient ingests aid-in-dying medication risks violating professional nursing standards, reinforces stigma regarding medical aid in dying, and potentially abandons patients and loved ones at a critical time in their passage toward a desired and legal death. The authors describe a case that depicts these three potential risks, concluding that even if such policies are not legally prohibited by state aid-in-dying statutes, hospices should eliminate them or at least be transparent about the practice and its rationale before accepting patients who request medical aid in dying.

Palliative Care and Hospice in the Pandemic: A Review of State Planning and Lessons Not Yet Learned.

CONTEXT: Written Crisis Standards of Care guidelines have been published federally in the United States for several decades to assisted in planning for a variety of disasters, and planning documents exist in most states. Federal and state crisis planning guidelines, both before and during the early COVID pandemic, focused on saving the most lives. Palliative care (PC) and hospice shortages were exacerbated by the COVID pandemic but recognized late and incompletely. OBJECTIVES: 1) Quantify the number of state crisis standard planning documents that include recognition of potential PC and hospice crisis needs in a pandemic. 2) Assess the range of practical plans in existing state Crisis Standards of Care plans. 3) Outline elements of recommendations from existing guidelines and literature. METHODS: Internet searches for state-based "crisis standards of care" completed and results categorized regarding PC and hospice planning as: 1) absent, 2) mentioned only in relation to critical care triage, 3) described only in general principles, 4) describing potential concrete plans to address PC and hospice needs. RESULTS: Of the 50 states and Washington, DC, 45 states have electronically available "crisis standards of care" or emergency preparedness documents; 35 of these were written or updated since 2020. Only 20 states mention any concrete aspects of planning for potential palliative care or hospice service shortages. Guidelines most often involved alternate care sites, protective equipment, and specialist resources. Visitation policy was rarely mentioned. CONCLUSIONS: Concrete planning for PC and hospice needs in state crisis planning occurs in less than half of state documents, even three years after the start of this pandemic. Failure to address these needs will result in avoidable suffering for patients in a wide range of settings. It is important to identify and address gaps before the next disaster.

Colorado Palliative Care and Hospice Crisis Standards: Moving Beyond Critical Care Planning.

Palliative care (PC) and hospice services have experienced shortages before 2020, and during the initial phases of the current pandemic, more critical gaps are expected with future surges, much as scarcity in intensive care unit services may recur during the COVID-19 pandemic. Although ethical allocation of ventilators and intensive care unit care is the subject of important discussions during this pandemic, caring for those at the end of life and those not desiring or qualifying for critical interventions must not be neglected, as critical care and comfort-focused care are intertwined. We review state and regional gaps already recognized in planning for scarcity in PC and hospice services during this pandemic and describe the planning initiatives Colorado has developed to address potential scarcities for this vulnerable and diverse group of people. We hope to encourage other state and regional groups to anticipate needs in the coming surges of this pandemic or in public health crises to come. Such planning is key to avoid the degradation of care that may result if it is necessary to invoke crisis standards of care and ration these essential services to our communities.

Interprofessional Master of Science in Palliative Care: On Becoming a Palliative Care Community Specialist.

Background: Palliative care (PC) is a limited resource in health care systems. Many providers develop a PC interest later in their careers when it is difficult to relocate and compete for a limited number of training positions. In communities without an academic tertiary medical center, interprofessional PC community specialists are poised to deliver high-quality accessible PC to patients/families with needs beyond what can be addressed by primary care providers. Objective: An interprofessional 36-credit Master of Science in Palliative Care (MSPC) provides evidence-based education to nurses, pharmacists, physicians, physician assistants, social workers, spiritual care providers, psychologists, counselors, and other allied health professionals. Design: The predominantly online curriculum, designed and taught by an interprofessional faculty, focuses on interdisciplinary teamwork, communication skills, and practical application of biomedical and psycho-sociocultural-spiritual-ethics content. The pedagogy is narrative based, emulating in-person clinical experiences, with patient cases progressing throughout the curriculum. We have enrolled four student cohorts. Measurements: Student self-assessments pre-mid-post program. Results: Students highly rate curriculum with demonstrated application of knowledge in case integration assignments, simulations with standardized patients, and Capstone Projects. Students' self-assessed skills on a 39-item scale increased on average to the highest level of 5 (able to perform independently and teach others). Conclusions: The inaugural student cohort reports high levels of engagement and satisfaction, including mastery and synthesis of didactic and experiential content through case integration projects. Students who worked in PC/hospice settings have advanced in their professions; others have transitioned to PC work. The MSPC has capacity to meet projected PC workforce gaps.

The POLST Paradox: Opportunities and Challenges in Honoring Patient End-of-Life Wishes in the Emergency Department.

Physician Orders for Life-Sustaining Treatment forms convert patient wishes into physician orders to direct care patients receive near the end of life. Recent evidence of the challenges and opportunities for honoring patient end-of-life wishes in the emergency department (ED) is presented. The forms can be very helpful in directing whether cardiopulmonary resuscitation and intubation are desired in the first few minutes of a patient's presentation. After initial stabilization, understanding the intent of end-of-life orders and the scope of further interventions requires discussion with the patient or a surrogate. The emergency medicine provider must be committed both to honoring initial resuscitation orders and to the conversations required to narrow the gap between ED care and patient wishes so that people receive care best aligned with their wishes.

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.

Colorado's New Proxy Law: 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.

Teaching Medical Students About "The Conversation": An Interactive Value-Based Advance Care Planning Session.

BACKGROUND: Advance care planning (ACP) promotes care consistent with patient wishes. Medical education should teach how to initiate value-based ACP conversations. OBJECTIVE: To develop and evaluate an ACP educational session to teach medical students a value-based ACP process and to encourage students to take personal ACP action steps. DESIGN: Groups of third-year medical students participated in a 75-minute session using personal reflection and discussion framed by The Conversation Starter Kit. The Conversation Project is a free resource designed to help individuals and families express their wishes for end-of-life care. SETTING AND PARTICIPANTS: One hundred twenty-seven US third-year medical students participated in the session. MEASUREMENTS: Student evaluations immediately after the session and 1 month later via electronic survey. RESULTS: More than 90% of students positively evaluated the educational value of the session, including rating highly the opportunities to reflect on their own ACP and to use The Conversation Starter Kit. Many students (65%) reported prior ACP conversations. After the session, 73% reported plans to discuss ACP, 91% had thought about preferences for future medical care, and 39% had chosen a medical decision maker. Only a minority had completed an advance directive (14%) or talked with their health-care provider (1%). One month later, there was no evidence that the session increased students' actions regarding these same ACP action steps. CONCLUSION: A value-based ACP educational session using The Conversation Starter Kit successfully engaged medical students in learning about ACP conversations, both professionally and personally. This session may help students initiate conversations for themselves and their patients.

Giving Voice to the Voiceless: The Colorado Response to Unrepresented Patients.

Medical decision making on behalf of unrepresented patients is one of the most challenging ethical issues faced in clinical practice. The legal environment surrounding these patients is equally complex. This article describes the efforts of a small coalition of interested healthcare professionals to address the issue in Colorado. A brief history of the effort is presented, along with discussion of the legal, ethical, practical, and political dimensions that arose in Colorado's effort to address decision making for unrepresented patients through an extension of the existing Colorado Medical Treatment Decision Act (CRS 15-18). A discussion of lessons learned in the process is included.

Domains of quality for clinical ethics case consultation: a mixed-method systematic review.

BACKGROUND: "Clinical ethics consultation" (CEC) is the provision of consultative services by an individual or team with the aim of helping health professionals, patients, and their families grapple with difficult ethical issues arising during health care. There are almost 25,000 articles in the worldwide literature on CEC, but very few explicitly address measuring the quality of CEC. Many more address quality implicitly, however. This article describes a rigorous protocol for compiling the diverse literature on CEC, analyzing it with a quality measurement lens, and seeking a set of potential quality domains for CEC based on areas of existing, but hitherto unrecognized, consensus in the literature. METHODS/DESIGN: This mixed-method systematic review will follow a sequential pattern: scoping review, qualitative synthesis, and then a quantitative synthesis. The scoping review will include categorizing all quality measures for CEC discussed in the literature, both quantitative and qualitative. The qualitative synthesis will generate a comprehensive analytic framework for understanding the quality of CEC and is expected to inform the quantitative synthesis, which will be a meta-analysis of studies reporting the effects of CEC on pre-specified clinical outcomes. DISCUSSION: The literature on CEC is broad and diverse and has never been examined with specific regard to quality measurement. We propose a novel mixed-methods approach to compile and synthesize this literature and to derive a framework for assessing quality in CEC. SYSTEMATIC REVIEW REGISTRATION: PROSPERO CRD42015023282.

A Case of Attempted Suicide in Huntington's Disease: Ethical and Moral Considerations.

A 62-year-old female with Huntington's disease presented after a suicide attempt. Her advance directive stated that she did not want intubation or resuscitation, which her family acknowledged and supported. Despite these directives, she was resuscitated in the emergency department and continued to state that she would attempt suicide again. Her suicidality in the face of a chronic and advancing illness, and her prolonged consistency in her desire to take her own life, left careproviders wondering how to provide ethical, respectful care to this patient. Tension between the ethical principles of autonomy and beneficence is central in this case. The patient's narrative demonstrated that her suicide was an autonomous decision, free from coercion or disordered thinking from mental illness. Beneficence then would seem to necessitate care aligned with the patient's desire to end her life, which created ethical uneasiness for her family and careproviders. The case highlights several end-of-life ethical considerations that have received much recent attention. With ongoing discussions about the legalization of aid in dying across the country, caregivers are challenged to understand what beneficence means in people with terminal illnesses who want a say in their death. This case also highlights the profound moral distress of families and careproviders that arises in such ethically challenging scenarios.

Ethics seminars: a best-practice approach to navigating the against-medical-advice discharge.

Patients who sign out or choose to leave the emergency department (ED) against medical advice (AMA) present important challenges. The current approach to the complex legal, ethical, and medical challenges that arise when adult patients decline medical care in the ED would benefit from a systematic best-practice strategy to maximize patient care outcomes, minimize legal risk, and reach the optimal ethical standard for this at-risk population. Professional responsibilities generated during an AMA encounter include determination of patient decision-making capacity, balancing protection of patient autonomy with prevention of harm, providing the best alternatives for patients who decline some or all of the proposed plan, negotiating to encourage patients to stay, planning for subsequent care, and documenting what transpired. We present two cases that illustrate key insights into a best-practice approach for emergency physicians (EPs) to address problems arising when patients want or need to leave the ED prior to completion of their care. We propose a practical, systematic framework, "AIMED" (assess, investigate, mitigate, explain, and document), that can be consistently applied in situations where patients consider leaving or do leave before their evaluations and urgent treatment are complete. Our goal is to maximize patient outcomes, minimize legal risk, and encourage a consistent and ethical approach to these vulnerable patients.

Frequent users of US emergency departments: characteristics and opportunities for intervention.

OBJECTIVE: To compare the characteristics of US adults by frequency of emergency department (ED) utilisation, specifically the prevalence of chronic diseases and outpatient primary care and mental health utilisation. METHODS: We analysed 157 818 adult participants of the 2004-2009 US National Health Interview Survey, an annual nationally representative sample. We defined ED utilisation during the past 12 months as non-users (0 ED visits), infrequent users (1-3 visits), frequent users (4-9 visits) and super-frequent users (≥10 visits). We compared demographic data, socioeconomic status, chronic diseases and access to care between these ED utilisation groups using multivariable logistic regression. RESULTS: Overall, super-frequent use was reported by 0.4% of US adults, frequent use by 2% and infrequent ED use by 19%. Patients reporting ≥4 ED visits were more likely to have Medicaid insurance (OR 1.57; 95% CI 1.34 to 1.85 vs private); fair or poor self-reported health (OR 2.98; 95% CI 2.57 to 3.46 vs excellent-very good); and chronic diseases such as coronary artery disease (OR 1.61; 95% CI 1.40 to 1.86), stroke (OR 1.58; 95% CI 1.36 to 1.83) or asthma (OR 1.64; 95% CI 1.46 to 1.85). While patients reporting the ED as their usual source of sick care were more likely to have ≥4 ED visits (OR 7.09; 95% CI 5.61 to 8.95 vs outpatient clinic as source), ≥10 outpatient visits in the past 12 months was also associated with frequent ED use (OR 11.4; 95% CI 9.09 to 14.2 vs no outpatient visits). CONCLUSIONS: Frequent ED users had a large burden of chronic diseases that also required high outpatient resources. Interventions designed to divert frequent ED users should focus on chronic disease management and access to outpatient services, particularly for Medicaid beneficiaries and other high risk subpopulations.