When People Facing Dementia Choose to Hasten Death: The Landscape of Current Ethical, Legal, Medical, and Social Considerations in the United States.

Some individuals facing dementia contemplate hastening their own death: weighing the possibility of living longer with dementia against the alternative of dying sooner but avoiding the later stages of cognitive and functional impairment. This weighing resonates with an ethical and legal consensus in the United States that individuals can voluntarily choose to forgo life-sustaining interventions and also that medical professionals can support these choices even when they will result in an earlier death. For these reasons, whether and how a terminally ill individual can choose to control the timing of their death is a topic that cannot be avoided when considering the dementia trajectory. With a focus on the U.S. context, this landscape review considers the status of provisions that would legally permit people facing dementia to hasten death with appropriate support from medical professionals. This review can be used to plan and guide clinical and legal practitioner discussion and policy development concerning evolving questions not fully covered by existing medical decision-making provisions.

Too Soon or Too Late: Rethinking the Significance of Six Months When Dementia Is a Primary Diagnosis.

Cultural narratives shape how we think about the world, including how we decide when the end of life begins. Hospice care has become an integral part of the end-of-life care in the United States, but as it has grown, its policies and practices have also imposed cultural narratives, like those associated with the "six-month rule" that the majority of the end of life takes place in the final six months of life. This idea is embedded in policies for a range of care practices and reimbursement processes, even though six months is not always a meaningful marker. In the case of people living with advanced dementia, six months is both too early in the trajectory to facilitate conversations and too late in the trajectory to ensure decision-making capacity. This essay encourages scholars and policy-makers to consider how cultural narratives may limit what they think is possible in care for people living with dementia.

Clinical Guidelines for Voluntarily Stopping Eating and Drinking (VSED).

As the care of patients with serious illness increasingly emphasizes clarifying goals of care, exploring quality of life, and minimizing patients' symptom burden, voluntarily stopping eating and drinking (VSED) has emerged as a topic of increasing interest for patients who face a diminishing quality of life. It is an option for those with serious illness that is legal in every state in the country, but for which there are few published comprehensive guidelines-and none specific to the American medical system-even as public awareness and the number of inquiries regarding this action increase. In addition to the ethical questions raised by the practice and support of VSED, there are also clinical, logistical, institutional, social, religious, spiritual, and administrative considerations for clinicians who are asked to respond to patients' inquiries about VSED and who discuss this option in end-of-life care. With these clinical guidelines, we seek to provide practical recommendations for clinicians who consider providing support to their patients who contemplate and/or undertake this effort to hasten death.

Generalist versus Specialist Palliative Medicine.

The issue of generalist versus specialist palliative care is on the minds of healthcare leaders everywhere. We are amid changing demographics of physicians. The industrialization of medicine is well underway in the US and around the developing world. Is it important to identify patients who benefit the most from specialist palliative care, given that it is currently a limited resource? Should we step out of standard practice and redesign palliative care using principles of population management? The COVID pandemic rapidly introduced virtual palliative care consults. Is it a better way to promote wide access to specialty palliative care? Looking forward, should we promote ways to advance primary palliative care and reserve specialty palliative care to patients who will benefit most from this level of care? These questions, and others, are considered in this transcribed discussion between leading physicians in the field.

Patients' perspectives on dialysis decision-making and end-of-life care
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BACKGROUND: Few studies have explored dialysis patients' perspectives on dialysis decision-making and end-of-life-care (EoLC) preferences. We surveyed a racially diverse cohort of maintenance dialysis patients in the Cleveland, OH, USA, metropolitan area. MATERIALS AND METHODS: In this cross-sectional study, we administered a 41-item questionnaire to 450 adult chronic dialysis patients. Items assessed patients' knowledge of their kidney disease as well as their attitudes toward chronic kidney disease (CKD) treatment issues and EoLC issues. RESULTS: The cohort included 67% Blacks, 27% Caucasians, 2.8% Hispanics, and 2.4% others. The response rate was 94% (423/450). Most patients considered it essential to obtain detailed information about their medical condition (80.6%) and prognosis (78.3%). Nearly 19% of respondents regretted their decision to start dialysis. 41% of patients would prefer treatment(s) aimed at relieving pain rather than prolonging life (30.5%), but a majority would want to be resuscitated (55.3%). Only 8.4% reported having a designated healthcare proxy, and 35.7% reported completing a living will. A significant percentage of patients wished to discuss their quality of life (71%), psychosocial and spiritual concerns (50.4%), and end-of-life issues (38%) with their nephrologist. CONCLUSION: Most dialysis patients wish to have more frequent discussions about their disease, prognosis, and EoLC planning. Findings from this study can inform the design of future interventions.
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Adopting the Quadruple Aim: The University of Rochester Medical Center Experience: Moving from Physician Burnout to Physician Resilience.

BACKGROUND: The high rates of burnout among medical professionals in the United States are well documented. The reasons for burnout and the factors that contribute to physician resilience among health care providers in academic centers, however, are less well studied. METHODS: Health care providers at a large academic center were surveyed to measure their degree of burnout and callousness and identify associated factors. Additional questions evaluated features linked to resilience. The survey assessed demographic variables, work characteristics, qualifications, experience, and citizenship. RESULTS: A total of 528 surveys were sent out; 469 providers responded, and 444 (84%) completed the survey. High burnout was reported by 214 providers (45.6%), and callousness was noted among 163 (34.8%). Rates of burnout and callousness were higher among advanced practice providers than physicians. Lack of support, lack of respect, and problems with work-life balance were themes significantly associated with a risk for burnout. Rates of burnout (P < .05) and callousness (P < .001) were also significantly higher among those who spent more than 80% of their time in patient care. Participation in patient care was the most sustaining factor, followed by teamwork, scholarly activities, autonomy, and medicine as a calling. CONCLUSIONS: Academic physicians enjoy patient care and value scholarly activities, but lack of support, lack of respect, workload, and problems with work-life balance prevent them from finding a sense of meaning in their professional work. Changes at the organizational level are needed to overcome these impediments and recreate joy in the practice of medicine.

An Integrated, Developmental Four-Year Medical School Curriculum in Palliative Care: A Longitudinal Content Evaluation Based on National Competency Standards.

BACKGROUND: While palliative care (PC) competencies for medical school graduates have been defined, the lack of established curriculum models and assessment tools hampers curricular evaluation. OBJECTIVE: To describe the scope and content of the University of Rochester's longitudinal, integrated four-year PC curriculum after 17 years of implementation, review student evaluative responses, and compare the curriculum to national competency standards. DESIGN AND SETTING: Combining and reorganizing a published PC curriculum assessment tool and a list of medical school PC competencies, we created a novel nine-topic framework to assess the content coverage of our curriculum. We queried our electronic medical school curriculum database and surveyed course and clerkship directors, as well as PC, pain, ethics, and humanities faculty, to locate where and when PC topics are taught and to collate student responses to these experiences. RESULTS: We present a comprehensive list of PC curricular activities over a four-year medical school experience. The curriculum covers all nine PC topics longitudinally in multiple formats. Five in-depth activities cover multiple PC topics in a format that integrates biological, psychological, and social dimensions; these activities have survived and evolved over 17 years in our setting. A majority of year 3 University of Rochester students feel "well" or "extremely well" trained in PC. CONCLUSIONS: Our four-year PC curriculum provides robust and developmentally appropriate training that addresses all nine evidence-based core topics for PC education. Medical student feedback and their Association of American Medical Colleges (AAMC) survey responses suggest that they find their PC learning experiences rewarding. This curriculum could serve as a model for other schools.

Voluntary Stopping Eating and Drinking.

Voluntary stopping of eating and drinking (VSED) is a deliberate, self-initiated attempt to hasten death in the setting of suffering refractory to optimal palliative interventions or prolonged dying that a person finds intolerable. Individuals who consider VSED tend to be older, have a serious but not always imminently terminal illness, place a high value on independence, and have significant illness burden. VSED can theoretically be performed independent of clinician assistance and therefore avoids many of the ethical and legal concerns associated with physician-assisted dying or other palliative measures of last resort, However, VSED is an intense process fraught with new sources of somatic and emotional suffering for individuals and their caregivers, so VSED is best supervised by an experienced, well-informed clinician who can provide appropriate pre-intervention assessment, anticipatory guidance, medical treatment of symptoms, and emotional support. Before initiation of VSED, clinicians should carefully screen for inadequately treated psychiatric conditions, unaddressed symptoms, existential suffering, and evidence of coercion-consultation from palliative medicine, psychiatry, or ethics is often indicated. The most common symptoms encountered after starting VSED are extreme thirst, hunger, dysuria, progressive disability, delirium, and somnolence. Although physiologically similar to cessation of artificial nutrition and hydration, the onset and management of symptoms is often different. We propose an organized system for evaluating individual appropriateness for VSED, anticipatory guidance, and management of symptoms associated with VSED. A brief review of ethical and legal considerations follows.

Staff Experiences Forming and Sustaining Palliative Care Teams in Nursing Homes.

Background and Objectives: Building palliative care (PC) capacity in nursing homes (NH) is a national priority and essential to providing high quality care for residents with advanced illness. We report on NH staff experiences in developing and sustaining Palliative Care Teams (PCTeams) as part of a randomized clinical trial to "Improve Palliative Care through Teamwork" (IMPACTT). Research Design and Methods: We conducted rapid ethnographic assessments of all NH (N = 14) in the intervention arm. Data included semistructured interviews with direct care and administrative staff (n = 41), field observations, and written materials. We used a phased approach to data analysis including open coding and comparative analyses within and across homes. Results: We found four key structural themes in our analysis including: administrative support, financial considerations, turnover and staffing, and competing priorities. The development and sustainability of the nascent PCTeams were constantly threatened by competing priorities and the key factor in their success was consistent and tangible administrative support. Discussion and Implications: While improving PC in NHs is a recognized priority, lack of stable infrastructure and unintended consequences of reimbursement policies created conditions which often thwarted the sustainability of the PCTeams.

Primary Palliative Care Education: A Pilot Survey.

The demand for palliative services is outpacing the availability of specialist palliative care clinicians. One strategy to fill this gap is to improve "primary palliative care" skills and knowledge of all clinicians who care for seriously ill patients. Previous educational efforts have shown mixed results, and one possible explanation is unrecognized discordance of educational goals between those offering education and potential primary palliative care learners. The article describes the results and feasibility of a needs assessment survey comparing interest in palliative care education topics and settings among both palliative care specialists (PCS) and nonpalliative care specialists (NPCS). This is the first attempt to measure the perceived importance of primary palliative care topics and preferences about learning settings from the perspectives of both NPCS and PCS. The results suggest substantial areas of both concordant and discordant opinions with respect to educational topics and learning settings. Such data are essential to guide primary palliative care educational efforts. Future work will be needed to determine whether these results are consistent across diverse health systems and what variables influence educational preferences.

Impact of Nursing Home Palliative Care Teams on End-of-Life Outcomes: A Randomized Controlled Trial.

BACKGROUND: Deficits in end-of-life care in nursing homes (NHs) are reported, but the impact of palliative care teams (PCTeams) on resident outcomes remains largely untested. OBJECTIVE: Test the impact of PCTeams on end-of-life outcomes. RESEARCH DESIGN: Multicomponent strategy employing a randomized, 2-arm controlled trial with a difference-in-difference analysis, and a nonrandomized second control group to assess the intervention's placebo effect. SUBJECTS: In all, 25 New York State NHs completed the trial (5830 decedent residents) and 609 NHs were in the nonrandomized group (119,486 decedents). MEASURES: Four risk-adjusted outcome measures: place of death, number of hospitalizations, self-reported moderate-to-severe pain, and depressive symptoms. The Minimum Data Set, vital status files, staff surveys, and in-depth interviews were employed. For each outcome, a difference-in-difference model compared the pre-post intervention periods using logistic and Poisson regressions. RESULTS: Overall, we found no statistically significant effect of the intervention. However, independent analysis of the interview data found that only 6 of the 14 treatment facilities had continuously working PCTeams throughout the study period. Decedents in homes with working teams had significant reductions in the odds of in-hospital death compared to the other treatment [odds ratio (OR), 0.400; P<0.001), control (OR, 0.482; P<0.05), and nonrandomized control NHs (0.581; P<0.01). Decedents in these NHs had reduced rates of depressive symptoms (OR, 0.191; P≤0.01), but not pain or hospitalizations. CONCLUSIONS: The intervention was not equally effective for all outcomes and facilities. As homes vary in their ability to adopt new care practices, and in their capacity to sustain them, reforms to create the environment in which effective palliative care can become broadly implemented are needed.