'If you build it, they will come to the wrong door: evaluating patient and caregiver-initiated ethics consultations via a patient portal'.

OBJECTIVES: Memorial Sloan Kettering Cancer Center (MSK) sought to empower patients and caregivers to be more proactive in requesting ethics consultations. METHODS: Functionality was developed on MSK's electronic patient portal that allowed patients and/or caregivers to request ethics consultations. The Ethics Consultation Service (ECS) responded to all requests, which were documented and analysed. RESULTS: Of the 74 requests made through the portal, only one fell under the purview of the ECS. The others were primarily requests for assistance with coordinating clinical care, hospital resources or frustrations with the hospital or clinical team. DISCUSSION: To better empower patients and caregivers to engage Ethics, healthcare organisations and ECSs must first provide them with accessible, understandable and iterative educational resources. CONCLUSION: After 19.5 months, the 'Request Ethics Consultation' functionality on the patient portal was suspended. Developing resources on the role of Ethics for our patients and caregivers remains a priority.

Drugs, delirium, and ethics at the end of life.

For older persons with delirium at the end of life, treatment involves complex trade-offs and highly value-sensitive decisions. The principles of beneficence, nonmaleficence, respect for autonomy, and justice establish important parameters but lack the structure necessary to guide clinicians in the optimal management of these patients. We propose a set of ethical rules to guide therapeutics-the canons of therapy-as a toolset to help clinicians deliberate about the competing concerns involved in the management of older patients with delirium at the end of life. These canons are standards of judgment that reflect how many experienced clinicians already intuitively practice, but which are helpful to articulate and apply as basic building blocks for a relatively neglected but emerging ethics of therapy. The canons of therapy most pertinent to the care of patients with delirium at the end of life are as follows: (1) restoration, which counsels that the goal of all treatment is to restore the patient, as much as possible, to homeostatic equilibrium; (2) means-end proportionality, which holds that every treatment should be well-fitted to the intended goal or end; (3) discretion, which counsels that an awareness of the limits of medical knowledge and practice should guide all treatment decisions; and (4) parsimony, which maintains that only as much therapeutic force as is necessary should be used to achieve the therapeutic goal. Carefully weighed and applied, these canons of therapy may provide the ethical structure needed to help clinicians optimally navigate complex cases.

Addressing Challenges With Sedation in End-of-Life Care.

In 2009, Quill and colleagues stipulated that there are three types of sedation practices at the end of life: ordinary sedation, proportionate palliative sedation (PPS), and palliative sedation to unconsciousness (PSU). Of the three, PPS and PSU are described as "last-resort options" to relieve refractory symptoms, and PSU as the most ethically controversial type that "should be quite rare." Unfortunately, little is known about actual sedation practices at the end of life in the United States. This may be due in part to a lack of conceptual clarity about sedation in end-of-life care. We argue that, until more is known about what sedation practices occur at the end of life, and how practices can be improved by research and more specific guidelines, "palliative sedation" will remain more misunderstood and controversial than it might otherwise be. In our view, overcoming the challenges posed by sedation in end-of-life care requires: 1) greater specificity regarding clinical situations and approaches to sedation, 2) research tailored to focused clinical questions, and 3) improved training and safeguards in sedation practices. Terms like PPS and PSU are relatively simple to understand in the abstract, but their application comprises various clinical situations and approaches to sedation. An obvious barrier to empirical research on sedation practices in end-of-life care is the challenge of determining these elements, especially if not clearly communicated. Additionally, we argue that training for palliative care specialists and others should include monitoring and rescue techniques as required competencies.

The Third Annual US Celebration of World Hospice and Palliative Care Day: A virtual coming together to unify the global palliative care community.

OBJECTIVES: On 3-4 October 2022, the Memorial Sloan Kettering Cancer Center Supportive Care Service and Department of Psychiatry and Behavioral Sciences hosted the Third Annual United States (US) Celebration of World Hospice and Palliative Care Day (WHPCD). The purpose of this article is to reflect on the event within the broader context of the international WHPCD theme: "healing hearts and communities." We describe lessons learned in anticipation of the fourth annual conference to be held on 3-4 October 2023. METHODS: Description of the third annual event, conference planning team reflection, and attendee evaluation responses. RESULTS: The Worldwide Hospice Palliative Care Alliance launched WHPCD in 2005 as an annual unified day of action to celebrate and support hospice and palliative care globally. Since 2020, the conference has attracted an increasing number of attendees from around the world. Two primary aims continue to guide the event: community building and wisdom sharing. Fifty-two interprofessional palliative care experts, advocates, patients, and caregivers provided 13 unique interactive sessions. Four hundred and fifty-eight multidisciplinary registrants from at least 17 countries joined the program. Free registration for colleagues in low- and middle-income countries, students and trainees, and individuals experiencing financial hardship remains a cornerstone of inclusion and equitable access to the event. SIGNIFICANCE OF RESULTS: The US WHPCD celebration provides a virtual platform that offers opportunities for scientific dissemination and collective reflection on hospice and palliative care delivery amid significant local and global changes in clinical practice, research, policy and advocacy, and population health. We remain committed to ensuring an internationally relevant, culturally diverse, and multidisciplinary agenda that will continue to draw increased participation worldwide during future annual events.

Call to action: empowering patients and families to initiate clinical ethics consultations.

Clinical ethics consultations exist to support patients, families and clinicians who are facing ethical or moral challenges related to patient care. They provide a forum for open communication, where all stakeholders are encouraged to express their concerns and articulate their viewpoints. Ethics consultations can be requested by patients, caregivers or members of a patient's clinical or supportive team. Although patients and by extension their families (especially in cases of decisional incapacity) are the common denominators in most ethics consultations, these constituents are the least likely to request them. At many healthcare organisations in the USA, ethics consultations are overwhelmingly requested by physicians and other clinicians. We believe it is vital that healthcare institutions bridge the knowledge gaps and power imbalances over access to ethics consultation services through augmented policies, procedures and infrastructure. With enhanced education and support, patients and families may use ethics consultation to elevate their voices and prioritise their unique characteristics and preferences in the delivery of their healthcare. Empowering patients and families to request ethics consultation can only strengthen the patient/family-clinician relationship, enhance the shared decision-making model of care and ultimately lead to improved patient-centred care.

Is there a role for ethics in addressing healthcare incivility?

In a healthcare setting, a multitude of ethical and moral challenges are often present when patients and families direct uncivil behavior toward clinicians and staff. These negative interactions may elicit strong social and emotional reactions among staff, other patients, and visitors; and they may impede the normal functioning of an institution. Ethics Committees and Clinical Ethics Consultation Services (CECSs) can meaningfully contribute to organizational efforts to effectively manage incivility through two distinct, yet inter-related channels. First, given their responsibility to promote a humane, respectful, and professional climate, many CECSs and Ethics Committees may assist institutional leadership in evaluating and monitoring incivility policies and procedures. Second, when confronted with individual incidents of patient/family incivility, Ethics Consultants can and often do work with all stakeholders to address and mitigate potentially deleterious impacts. This manuscript presents an overview of the multifaceted ethical implications of incivility in the healthcare environment, discusses the inherent qualifications of Ethics Consultants for assisting in the management of incivility, and proposes specific mitigating actions within the purview of CECSs and Ethics Committees. We also invite healthcare organizations to harness the skills and reputation of their CECSs and Ethics Committees in confronting incivility through comprehensive policies, procedures, and training.

Ethics Consultation Requests After Implementation of an Electronic Health Record Order.

PURPOSE: As the role of clinical ethics consultation in health care advances, there are calls to standardize the process of consultation. The Ethics Committee at Memorial Sloan Kettering Cancer Center (MSK) hypothesized that the process of requesting an ethics consultation could be improved by instituting an electronic health record (EHR) order for consultation requests. This report summarizes the impact of adopting an EHR order for ethics consultation requests at MSK. METHODS: This retrospective review of all clinical ethics consultations requested at a tertiary cancer center from May 2017 to February 2020 spans 17 months before and after implementation of an electronic order for consultation requests. Summary statistics are presented using Pearson chi-square analyses with a significance level of 0.05. RESULTS: There was a significant increase in the total number of consultation requests placed after implementation of the EHR order (n = 165, 0.08% of total patients) compared with before (n = 108, 0.05% of total patients; P = .007). The number of consults requested by providers from inpatient (P = .02) and outpatient (P = .04) settings significantly increased. The proportion of consults placed by medical versus nonmedical providers remained unchanged (P = .32). CONCLUSION: In this large single-institution retrospective study, implementation of an EHR order for ethics consultation requests was associated with a significant increase in the number of consultation requests. Implementation of an electronic order may decrease barriers to ethics consultation in diverse practice settings. Further longitudinal, multicenter studies are needed to assess strategies to improve access to clinical ethics consultation for oncology patients.

COVID-19 double jeopardy: the overwhelming impact of the social determinants of health.

BACKGROUND: The COVID-19 pandemic has strained healthcare systems by creating a tragic imbalance between needs and resources. Governments and healthcare organizations have adapted to this pronounced scarcity by applying allocation guidelines to facilitate life-or-death decision-making, reduce bias, and save as many lives as possible. However, we argue that in societies beset by longstanding inequities, these approaches fall short as mortality patterns for historically discriminated against communities have been disturbingly higher than in the general population. METHODS: We review attack and fatality rates; survey allocation protocols designed to deal with the extreme scarcity characteristic of the earliest phases of the pandemic; and highlight the larger ethical perspectives (Utilitarianism, non-Utilitarian Rawlsian justice) that might justify such allocation practices. RESULTS: The COVID-19 pandemic has dramatically amplified the dire effects of disparities with respect to the social determinants of health. Patients in historically marginalized groups not only have significantly poorer health prospects but also lower prospects of accessing high quality medical care and benefitting from it even when available. Thus, mortality among minority groups has ranged from 1.9 to 2.4 times greater than the rest of the population. Standard allocation schemas, that prioritize those most likely to benefit, perpetuate and may even exacerbate preexisting systemic injustices. CONCLUSIONS: To be better prepared for the inevitable next pandemic, we must urgently begin the monumental project of addressing and reforming the structural inequities in US society that account for the strikingly disparate mortality rates we have witnessed over the course of the current pandemic.

The 2nd Annual US Celebration of World Hospice and Palliative Care Day: A virtual coming together to support equity in palliative care access.

OBJECTIVE: On October 5-6, 2021, the Memorial Sloan Kettering Cancer Center Supportive Care Service and Department of Psychiatry and Behavioral Sciences hosted the 2nd Annual United States (US) Celebration of World Hospice and Palliative Care Day (WHPCD). The purpose of this article is to describe the event within the broader context of the international WHPCD theme: "Leave No One Behind - Equity in Access to Palliative Care." We reflect on lessons learned in anticipation of the 3rd annual conference to be held October 3-4, 2022. METHODS: Description of the 2nd annual event, conference planning team reflection, and attendee evaluation responses. RESULTS: The Worldwide Hospice Palliative Care Alliance launched WHPCD in 2005 as an annual unified day of action to celebrate and support hospice and palliative care around the world. The 2021 US-based innovative virtual conference featured 37 interprofessional hospice and palliative care specialists and patient and family caregiver speakers across 11 diverse sessions with a focus on health equity and COVID-19 considerations. Two primary aims continue to guide the event: community building and wisdom sharing at the intersection of art and science. 278 registrants from at least 14 countries and 21 different states across the US joined the program, which served as a global debriefing for hospice and palliative care workers from diverse settings, contexts, and disciplines. SIGNIFICANCE OF RESULTS: The US WHPCD Celebration creates a virtual coming together for collective reflection on hospice and palliative care delivery amid vast changes in clinical practice, research, and policy, both locally and globally. In addition, our goal to ensure an internationally relevant, culturally inclusive, and multidisciplinary agenda will continue to draw increased participation worldwide during future annual events.

Staff Experiences at a New York City Medical Center During the Spring Peak of the Covid-19 Pandemic: A Qualitative Study.

Purpose: In March-April 2020, New York City was overwhelmed by COVID-19 infections, leading to substantial disruptions in nearly all aspects of care and operations at most local hospitals. This qualitative study of a quaternary, urban oncology hospital investigated the effects of these disruptions upon a professionally diverse cohort of its employees, including physicians, nurses, respiratory therapists, pharmacists, security guards, histology technicians, and environmental services workers. Methods: The participant pool were selected through a combination of purposive and random sampling methodology and coders performed a thematic content analysis of open-ended responses. Results: Analysis revealed several important themes, including concerns about exposure for self and others; patient care as a source of both satisfaction and stress; psychological consequences of uncertainty and ambiguity; family as sources of both comfort and apprehension; the importance of adequate institutional communication; and support from colleagues. Conclusion: Results and analysis provide suggestions for institutional policies and initiatives in the event of a COVID-19 surge or another public health crisis. Administrative efforts should aspire to establish, strengthen, and promote interdisciplinary and interdepartmental efforts to address, and mitigate workplace and personal stressors. through timely and transparent communications, consistent clinical guidance and information about changes in hospital policies and supplemental employee assistance.

COVID-19-Related Ethics Consultations at a Cancer Center in New York City: A Content Review of Ethics Consultations During the Early Stages of the Pandemic.

PURPOSE: The coronavirus disease 2019 (COVID-19) pandemic has raised a variety of ethical dilemmas for health care providers. Limited data are available on how a patient's concomitant cancer diagnosis affected ethical concerns raised during the early stages of the pandemic. METHODS: We performed a retrospective review of all COVID-related ethics consultations registered in a prospectively collected ethics database at a tertiary cancer center between March 14, 2020, and April 28, 2020. Primary and secondary ethical issues, as well as important contextual factors, were identified. RESULTS: Twenty-six clinical ethics consultations were performed on 24 patients with cancer (58.3% male; median age, 65.5 years). The most common primary ethical issues were code status (n = 11), obligation to provide nonbeneficial treatment (n = 3), patient autonomy (n = 3), resource allocation (n = 3), and delivery of care wherein the risk to staff might outweigh the potential benefit to the patient (n = 3). An additional nine consultations raised concerns about staff safety in the context of likely nonbeneficial treatment as a secondary issue. Unique contextual issues identified included concerns about public safety for patients requesting discharge against medical advice (n = 3) and difficulties around decision making, especially with regard to code status because of an inability to reach surrogates (n = 3). CONCLUSION: During the early pandemic, the care of patients with cancer and COVID-19 spurred a number of ethics consultations, which were largely focused on code status. Most cases also raised concerns about staff safety in the context of limited benefit to patients, a highly unusual scenario at our institution that may have been triggered by critical supply shortages.

Decisional Capacity Determination In Patients With Cancer.

Patients with cancer face many difficult decisions and encounter many clinical situations that undermine decisional capacity. For this reason, assessing decision-making capacity should be thought of at every medical encounter. The culmination of variable disease trajectories, following patients to the end of life, use of high-risk treatments, and other weighty personal decisions require attention to patients' ability to engage in decisions. Oncologists develop meaningful relationships with their patients. This familiarity may lead to forgoing the process of diligently assessing a patient's cognitive ability and/or decisional capacity when important decisions need to be made. While the process may feel like it takes place spontaneously, many subtle and overt details are involved with the decisions around cancer care that require pointed questioning and probing. Thus, there are many ways to fall short in determining decisional capacity. Clinicians are inconsistent in their decisional capacity determinations and generally assume more decisional capacity than the patient has. Consult and referral services such as ethics and psychiatry can help with treatment decisions and with assessing underlying psychosocial and psychiatric conditions. Decisional capacity may fluctuate and requires a variable amount of decisional ability depending on the clinical situation; hence, it is time-specific and decision-specific. This review is intended to provide a summary of key components of decisional capacity while highlighting areas in need of clinical refinement.