While Comfort Feeding Only is appropriate for patients with advanced dementia, its emphasis on assiduous hand-feeding that may prolong life for years fails to accommodate the preferences of those who do not want to continue living with this illness. Some have proposed advance directives to completely halt the provision of oral nutrition and hydration once a person has reached an advanced stage of dementia. However, these directives may fail to address patients’ discomfort, caregivers’ obligations, or current care and regulatory standards when patients reside in facilities. In response to these dilemmas, we introduce Minimal Comfort Feeding (MCF). Rather than offering food and liquids proactively as with Comfort Feeding Only, caregivers provide nutrition and hydration only in response to signs of hunger and thirst. While further study is required to define and negotiate challenges in operationalizing this approach, MCF provides a framework that resolves competing ethical and clinical considerations in caring for those with advanced dementia.

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.

Abstract Background: The management of HER2-positive (HER2+) metastatic breast cancer (MBC) has continued to evolve, with multiple FDA approvals of novel HER2-targeted agents since late 2019. Considering the growing HER2+ MBC treatment armamentarium, we sought to identify current practice patterns among community healthcare professionals (HCPs) for HER2+ MBC by comparing HCP and key opinion leader (KOL) treatment recommendations using an online decision support tool. Methods: An online decision support tool was developed with input from 5 KOLs to provide therapy recommendations for 630 HER2+ MBC patient case scenarios based on conventional considerations including distribution of metastatic disease, treatment history, duration of response, and specific comorbidities. HCP tool users entered specific patient criteria to define a case along with their intended management for each case. The tool then showed 5 KOL recommendations for the user-entered patient case, and the users were asked to indicate if the expert recommendations confirmed or changed their intended approach. An analysis of expert recommendations and user-selected therapy was performed. Results: Between November 2022 and July 2023, 313 patient cases were entered by 242 participating HCPs. HCP and KOL treatment recommendations were frequently discordant (Table). For patients with de novo HER2+ MBC (n = 55), there was strong concordance (63%; P = .0001) between HCP and KOL recommendations. However, weak treatment selection concordance (53%; P < .0001) was observed for patients with disease progression after standard neoadjuvant/adjuvant therapy with chemotherapy plus HER2-targeted agents (n = 57). In the second-line setting, 43% concordance was observed for patients with non‒central nervous system (CNS) disease progression without CNS progression after first-line therapy with THP (n = 67; P < .0001), whereas 61% concordance was observed for patients with non-CNS and CNS disease progression after first-line therapy with THP (n = 61; P < .0001). In the third-line setting, 31% concordance was observed for patients with non-CNS disease progression without CNS progression (n = 32; P < .0001), and 47% concordance was observed for patients with non-CNS and CNS disease progression (n = 19; P = .0009). For HCPs whose treatment plan did not match KOL recommendations in these scenarios, 62% indicated that KOL recommendations confirmed or changed their intended therapy, but 19% indicated that there were barriers to implementing those recommendations. Conclusions: These data suggest ongoing challenges to optimally incorporate novel HER2-targeted therapies in the care of patients with HER2+ MBC, particularly in the second line and beyond, but an online tool providing KOL advice on specific patient scenarios confirmed or changed the clinical approach for a majority of HCPs. Thus, continued development of resources for HCPs, including online decision support tools, may be increasingly important given the rapidly evolving treatment landscape. Table. Summary of Treatment Choices by KOLs or HCPs for Select Patient Scenarios Citation Format: Kristen Rosenthal, Sara Hurvitz, Komal Jhaveri, Heather McArthur, Sara Tolaney, Timothy Quill. Contemporary HER2-Positive MBC Treatment Recommendations Among Community Healthcare Professionals: Analysis of an Online Interactive Decision Support Tool [abstract]. In: Proceedings of the 2023 San Antonio Breast Cancer Symposium; 2023 Dec 5-9; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2024;84(9 Suppl):Abstract nr PO2-10-08.

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.

Abstract Background: The treatment landscape for patients with hormone receptor–positive/HER2-negative early breast cancer (HR+/HER2- EBC) has evolved with the emergence of adjuvant CDK4/6 inhibitor therapy as a new option for patients with a high risk of disease recurrence. Adjuvant abemaciclib plus aromatase inhibitors (AIs) is guideline recommended for high clinical risk HR+ disease and reduces risk of recurrence regardless of Ki-67 expression level. Here, we examine healthcare professionals’ (HCPs’) awareness and practice regarding the use of adjuvant abemaciclib. Methods: Between November 2022 and June 2023, we conducted a series of regional educational activities for HCPs focused on management of high-risk HR+/HER2- EBC. Each activity included an interactive lecture led by a clinical investigator with expertise in managing patients with high-risk HR+/HER2- EBC and polling questions designed to assess key aspects of HCP knowledge and practice in the optimal management of high-risk HR+/HER2- EBC. A wider HCP audience was able to view an interactive on-demand webcast with the same content and embedded polling questions. Results: In total, 701 HCPs participated in one of 20 live (n = 373) activities or the one associated on-demand (n = 328) webcast. The distribution of HCP participation differed between the live and online activities with more physicians participating in the online activity vs the live activity (59% vs 34%, respectively); the converse was true for nurse participation (9% online vs 34% live). Polling result trends were similar between the live and online activities. At baseline, 38% (n/N = 182/405) of HCPs chose adjuvant therapy with an AI plus abemaciclib for a patient with high-risk, node-positive HR+/HER2- EBC consistent with expert and guideline recommendations. Following the education, 92% (n/N = 405/439) of HCPs selected AI plus abemaciclib for appropriate patients. Before education, 32% of HCPs (n/N = 147/454) were aware that adjuvant abemaciclib plus endocrine therapy improved invasive disease-free survival compared with endocrine therapy alone in patients with high-risk, node-positive HR+/HER2- EBC regardless of Ki-67 expression level, which increased to 87% (n/N = 370/425) following the education. Regarding the management of grade 2 neutropenia associated with adjuvant abemaciclib therapy, HCP knowledge was low at baseline (32%, n/N = 141/446) and improved to 80% (n/N = 332/415) after education. Conclusions: HCPs’ knowledge of and practice concerning adjuvant abemaciclib as a newer approved therapy for patients with high-risk HR+/HER2- EBC remain suboptimal. These results suggest an ongoing need for expert guidance and educational activities on the use of adjuvant abemaciclib therapy for appropriate patients with high-risk HR+/HER2- EBC. As the treatment landscape for HR+/HER2- EBC continues to evolve with the potential approval of additional new therapies, this need will only increase with a clear impact on optimizing and individualizing adjuvant therapy strategies for patients with HR+/HER2- EBC. Citation Format: Marie Becker, Timothy Quill, Erika Hamilton, Joyce O'Shaughnessy. Educational Opportunities to Improve Community Healthcare Professionals’ Management of High-Risk HR-Positive/HER2-Negative Early Breast Cancer [abstract]. In: Proceedings of the 2023 San Antonio Breast Cancer Symposium; 2023 Dec 5-9; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2024;84(9 Suppl):Abstract nr PO3-02-01.

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.

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.

Background Over the last decade, immune checkpoint inhibitors targeting CTLA-4 and PD-(L)1 have revolutionized the care of patients with melanoma and many other tumor types. Recently, the immunoregulatory pathway comprised of LAG-3 and its ligands became the third immune checkpoint pathway for which blockade demonstrated benefit in a phase III clinical trial (RELATIVITY-047).1 We explored oncology HCP familiarity with anti-LAG-3 mechanism of action, FDA-approved indications, and identification and management of associated adverse events. Methods Between March and July 2022, we conducted an educational activity series for oncology HCPs. Each activity included 1) an interactive lecture led by a clinical investigator with expertise in the efficacy and safety of targeting LAG-3 in patients with melanoma and other cancers, and 2) polling questions designed to assess key aspects of HCP knowledge of LAG-3 and LAG-3-directed therapies. Results 338 HCPs participated in 8 live and 1 online on-demand activities. Awareness of the role of LAG-3 and the rationale for combining a LAG-3 inhibitor with a PD-1 inhibitor was low at baseline with only 29% (37/126) of learners correctly identifying that the LAG-3 and PD-1 pathways are non-redundant, improving to 86% (115/134) after the lecture. A similarly low percentage of HCPs (21%, 28/132) could identify the FDA-approved indication for relatlimab (anti-LAG-3) plus nivolumab (anti-PD-1) (patients with advanced melanoma regardless of line of therapy or LAG-3 expression level) at baseline, improving to 85% (116/136) after the lecture. A majority of HCPs (83%, 99/119) reported low confidence to identify and appropriately manage adverse events associated with anti-LAG-3 combination therapy (baseline 2.42 on scale of 1-7, improving to 4.9 after the lecture). Participation in this educational activity improved HCP knowledge of the role of LAG-3 and of approved indications for anti-LAG-3 therapy. Self-reported confidence in managing adverse events associated with relatlimab plus nivolumab was also improved through education. Conclusions HCP knowledge and confidence regarding the clinical utility of targeting LAG-3 with anti-LAG-3 therapies is low. Educational activities designed to address these deficiencies would be of clear benefit to HCPs treating patients with advanced melanoma and potentially other cancers. A detailed analysis of HCP trends will be presented. Reference Tawbi HA, Schadenorf D Lipson EJ, et al. Relatlimab and nivolumab versus nivolumab in untreated advanced melanoma. New Engl J Med. 2022;386:24–34.

VSED begins with excellent symptom management supported by experienced clinicians. VSED is largely patient controlled, but involvement of experienced palliative care providers and family is strongly recommended. Decision making capacity is frequently lost late in the process as death nears, so written advance directives to continue withholding food and fluids should be completed prior to initiating VSED to forestall any misunderstandings of the patient’s wishes. Challenges associated with VSED include its two week duration before death, the personal determination required, and the possibility of delirium in the latter stages that potentially compromises the commitment to forgo fluids. These challenges should be anticipated and planned for. The primary advantages of VSED include: 1) predictable two week duration from initiation to death; 2) alertness for the early phase, 3) no terminal illness requirement, 4) largely under the patient’s control, and 5) awareness of the possibility of VSED can provide comfort to those worried about unacceptable future suffering.

We read with great interest the recent publication by Kollisch et al1Kollisch DO Santulli RB Bernat JL The limits of advance directives in maintaining autonomy in patients with advanced dementia.Am J Med. 2021; ([e-pub ahead of print]) (Apr 1)https://doi.org/10.1016/j.amjmed.2021.02.032Abstract Full Text Full Text PDF PubMed Scopus (1) Google Scholar outlining limits of advance directives for avoiding advanced dementia. The authors identify an important dilemma. Must patients with early signs of dementia who would rather be dead than alive with advanced dementia hasten their death preemptively by willfully stopping eating and drinking? Must they act while they still have decision-making capacity and are still enjoying life? Or may these patients avoid such “premature death” by making their future wishes known through an “advance dementia directive,” counting on others to withhold food and drink on their behalf once capacity is lost? Furthermore, suppose the patient completed a dementia directive, later lost decision-making capacity, but now appears to be enjoying eating and drinking. Should caregivers listen to the “then-self” who completed the directive or to the “now-self”? While going without food and water can usually be made comfortable, the now-self advanced dementia patient would not understand why one of the few things they enjoy is being withheld.2Quill TE Lo B Brock DW Palliative options of last resort: a comparison of voluntarily stopping eating and drinking, terminal sedation, physician-assisted suicide, and voluntary active euthanasia.JAMA. 1997; 278: 2099-2104Crossref PubMed Google Scholar Therefore, perhaps other “last resort” death-hastening options should be made available to such patients.3Steinbock B Menzel PT Advance directives for refusing lifesaving treatment in dementia.Hastings Cent Rep. 2018; 48 (Available at:): S75-S79https://onlinelibrary.wiley.com/doi/epdf/10.1002/hast.919Date accessed: June 1, 2021Crossref PubMed Scopus (8) Google Scholar If you are interested in exploring in more depth the clinical, psychiatric, ethical, and legal dimensions of these intriguing ideas, we have just completed a multi-authored book on the subject.4Quill TE Menzel PT Pope TM Schwarz JK Voluntarily Stopping Eating and Drinking: A Compassionate, Widely Available Option for Hastening Death. Oxford University Press, New York2021Crossref Google Scholar

Inequities manifest in many forms within our society. 1 Feagin J. Bennefield Z. Systemic racism and U.S. health care. Soc Sci Med. 2014; 103: 7-14 Crossref PubMed Scopus (332) Google Scholar , 2 Gee G.C. Ford C.L. Structural racism and HEALTH inequities: Old issues, new directions. Du Bois Rev. 2011; 8: 115-132 Crossref PubMed Scopus (534) Google Scholar Racial inequity has become painfully visible this past year. Race in and of itself has no biological basis. Race is a social construct based on phenotypical characteristics such as skin color, features, and hair texture. Related but distinct in concept, ethnicity is defined by how groups share national, tribal, religious, linguistic, or cultural origins. Racial and ethnic equity would mean fair treatment, access, opportunity, and advancement for people of all races and ethnicities within society. Achieving racial and ethnic equity begins with an understanding of the root causes of inequities, which academic medicine seeks to do. 3 Feagin J. Systemic racism and “race” Categorization in U.S. Medical research and Practice. Am J Bioeth. 2017; 17: 54-56 Crossref PubMed Scopus (9) Google Scholar , 4 Ford C.L. Airhihenbuwa C.O. Critical Race Theory, race equity, and public health: toward antiracism praxis. Am J Public Health. 2010; 100: S30-S35 Crossref PubMed Scopus (377) Google Scholar , 5 Jones C.P. Levels of racism: a theoretic framework and a gardener's tale. Am J Public Health. 2000; 90: 1212-1215 Crossref PubMed Scopus (1077) Google Scholar

Background Chimeric antigen receptor (CAR) T-cell therapy has been a major innovative breakthrough for hematologic malignancies. These therapies are associated with unique and potentially serious toxicities, including cytokine release syndrome (CRS) and immune effector cell–associated neurotoxicity (ICANS), that require vigilance, prompt recognition, and appropriate management to ensure patient safety and optimal therapeutic benefit. We developed an online tool to give healthcare providers (HCPs) case-specific, evidence-based expert guidance on the management of adverse events (AEs) from CAR T-cell therapy. Here, we report an updated analysis comparing CAR T-cell toxicity management among HCPs using the tool vs the expert consensus recommendations.1 Methods In March 2019, 5 experts provided consensus guidance for the screening, prophylaxis, monitoring, and management of CRS and ICANS in patients considering or receiving CAR T-cell therapy. This information was used to build the interactive online tool. To use this tool, HCPs enter the AE of interest, the severity of the event,2 and their planned management approach. The HCPs were then shown the expert recommendation for that specific scenario. After viewing the expert recommendation, HCPs were asked if it affected their intended approach. Results Between May 2019 and July 2020, 282 HCPs entered 431 unique case scenarios into the tool. Of the entered cases, 56% were HCPs seeking expert recommendations on pretreatment screening and prophylaxis/monitoring strategies for patients not yet experiencing an AE. Of 188 cases entered for patients who received CAR T-cell therapy and experienced an AE, 67% were CRS and 33% were neurotoxicity/ICANS. Overall the planned toxicity management strategy of HCPs matched the expert recommendations in 57% of cases, with a similar rate of concordance for both CRS and ICANS events. There was no significant difference in concordance rates with expert recommendations by toxicity severity (figure 1) nor among HCPs who indicated they practiced at authorized centers vs those who did not (P = 0.7184). Among HCPs who answered the optional survey on the impact of the tool on their management plan, 30% indicated that the expert recommendations changed their approach. Conclusions These data suggest that many HCPs are challenged to optimally manage CAR T-cell therapy toxicities in concordance with expert recommendations. Use of an online tool providing easy access to evidence-based consensus expert recommendations may improve care and safety in patients treated with CAR T-cell therapy. A detailed analysis of the tool including planned management vs expert recommendations for each toxicity and grade will be presented. References Frigault MJ, Cartwright M, Marcello K, Quill T, DeAngelo DJ, Galinsky IA, Paul S, Park JH. Management of CAR T-Cell toxicities: concordance and divergence between healthcare providers and expert recommendations. Blood 2019:134:2199. Lee DW, Santomasso BD, Lock FL, Ghobadi A, Turtle CJ, Brudno JN, Maus MV, Park JH, Mead E, Pavletic S, Go WY, Eldjerou L, Gardner RA, Frey N, Curran KJ, Peggs K, Pasquini M, DiPersio JF, van den Brink MRM, Komanduri KV, Grupp SA, Neelapu SS. ASTCT Consensus grading for cytokine release syndrome and neurologic toxicity associated with immune effector cells. Biol Blood Marrow Transplant 2019;25:625–638.

•Compare and contrast various “options of last resort,” including: voluntary stopping eating and drinking, palliative sedation, physician assisted death, and euthanasia.•Compare and contrast Unitarian and Catholic views on physician assisted death.•Describe a position on physician assisted death that takes into account differing views of morality, patient autonomy, and physician responsibility. Recent years have seen increasing acceptance of physician assisted death (PAD) in the United States with there now being eight states and the District of Columbia that have some form of legal PAD. This growing acceptance, however, continues to be met with resistance from a number of groups based in part on differing views on religion, morality, authority, and concerns regarding disability rights. What are the sources of conflict around PAD? Much of the disagreement is grounded in true differences of opinion, but at least some of the conflict arises from misunderstandings and lack of agreement regarding definitions of terms. In this concurrent session definitions of end of life “options of last resort” will be reviewed and discussed. Then arguments will be presented for and against PAD and other last resort options from the Unitarian Universalist and Catholic perspectives. Possible responses to patient requests for PAD will also be considered from each viewpoint, and consideration will be given as to how these responses might vary when practicing in a jurisdiction where PAD is legal vs. illegal. Audience participation will be encouraged throughout the session in an effort to help clarify both commonalities and issues around which these two viewpoints are truly in conflict. Attendees will leave this concurrent session with practical knowledge and tools to formulate and refine their own views on PAD.

•Identify the prevalence of loneliness in palliative patients.•Recognize the prevalence of loneliness in palliative patients.•Identify at least three practical strategies to detect and manage loneliness in your daily practice. It is well known that loneliness is a significant risk factor for premature mortality and is comparable with the effects of smoking. However, little attention has been paid to the terrible impact of loneliness and social isolation experienced by seriously ill patients. On the provider side, palliative clinicians often feel profoundly isolated from the traditional curative medical culture exclusively focused on diseases. Being alone and loneliness are different but related. Social isolation is the objective physical separation from other people while loneliness is the subjective distress feeling of being alone or separated. It's possible to feel lonely while among other people, and you can be alone yet not feel lonely. This session will provide an overview of loneliness and social isolation, use real-life patient narratives, and compare/contrast the experiences of palliative patients and providers. Using immersive learning techniques, we will identify three simple and practical strategies to mitigate “the most terrible poverty” (Mother Teresa) of loneliness.

•Identify two clinical circumstances where VSED might be a viable option and two clinical contraindications to the practice.•Name two ethical principles that would support this practice as well as two ethical principles that might prohibit the practice, as well as the current status of the law around this practice in the US.•Understand how VSED might be consistent with some cultural practices toward the end of life, and how it might be morally prohibited in others.•Explore how the clinical, ethical and cultural aspects of VSED play out within a diverse group of real cases. Voluntarily Stopping Eating and Drinking (VSED) has recently gotten attention as a viable “last resort” palliative option for patients who want to escape their current medical situation through a self initiated death, but might not qualify for a physician assisted death or might not want it even if they did qualify. VSED is primarily under the patients own control, and it requires a tremendous amount of discipline and persistence to successfully complete. Physicians are not direclty needed to carry out VSED, but they should be a central part of the evaluation process to ensure decision making capacity, and then part of the support process to help palliate symptoms and respond to challenges. We will explore the clinical, ethical, legal, moral and cultural challenges and opportunities of this practice both in theoretical terms, and then through three real clinical cases; 1) a patient with early to moderate alzheimer who wanted no part of the later stages; 2) a patient with advanced cancer and paralysis who wanted PAD but lived in NY where it is illegal, and 3) a patient with advanced terminal disease and complex cultural issues around eating and intentionally hastening death. Opportunity for interaction and exploration of the clinical, ethical and cultural elements of process itself, as well as how it unfolded in each of the cases will be provided.

•Explain the unique factors that shape the illness experience for those challenged by economic and racial barriers.•Enhance skills in cultural humility and cultural competence.•Improve care of disadvantaged populations by deepening understanding of how to develop approaches that are specifically tailored to meet the needs of those who live and die at the margins.•Formulate strategies to advance public policies to address disparities in care for disadvantaged populations. Those challenged by economic and racial barriers suffer more than the rest of us—in life and death. Many patients who live and die at the margins experience mistrust and disempowerment as they navigate serious illness and the complexity of the medical systems that care for them. This presentation will describe how the intersection of racial and economic disempowerment with dying creates burden and suffering that is difficult to imagine. It also delineates how patients and families draw on social and spiritual capital to develop resilience and strategies for coping. If one listens carefully to the narratives of patients that run throughout the session, an enhanced vision of palliative and hospice care will emerge. This view declares that dying is far more than just a medical problem. It reminds that care of the dying is best done in meaningful collaboration with the community. It also advances a call to action for clinicians of all types to extend their skills and leadership into the arena of local and national policy, and to remind policymakers of their obligation to improve the healthcare system for vulneable patients and their loved ones. It also encourages us to develop practices that challenge conventional norms of care or risk not being able to ease the suffering of those among us who are often forgotten about or ignored. The presentation gives voice to the voiceless—the urban dying poor—and connects them to the voices of leaders in end-of-life care. It emphasizes that best practices in caring require developing skills in cultural humility and competence. Living and dying at the margins create unique stress and strain. When understandings and professional competency in serving the vulnerable are strenghened, the grim circumstances of the poor's lives may be eased into peace, dignity, and enhanced respect throughout the dying experience.