'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.

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.

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.

Ethics consultations in neuro-oncology.

BACKGROUND: Management of patients with brain tumors can lead to ethical and decisional dilemmas. The aim of this study was to characterize ethical conflicts encountered in neuro-oncologic patients. METHODS: Retrospective review of ethics consultations performed upon patients with primary and metastatic brain tumors at a tertiary cancer center. An ethics consultation database was examined to characterize ethical conflicts, contextual factors, and interventions by the consultation team. RESULTS: Fifty consultations were reviewed; 28 (56%) patients were women, median age 54 (range 4-86); 27 (54%) patients had a primary central nervous system malignancy; 20 (40%) had brain metastasis. At the time of consultations, 41 (82%) patients lacked decisional capacity; 48 (96%) had a designated surrogate decision maker; 3 (6%) had an advance directive outlining wishes regarding medical treatment; 12 (24%) had a Do Not Attempt Resuscitation (DNAR) order. Ethical conflicts centered upon management of end-of-life (EOL) circumstances in 37 (72%) of cases; of these, 30 did not have decisional capacity. The most common ethical issues were DNAR status, surrogate decision making, and request for nonbeneficial treatment. Consultants resolved conflicts by facilitating decision making for incapacitated patients in 30 (60%) cases, communication between conflicting parties in 10 (20%), and re-articulation of patients' previously stated wishes in 6 (12%). CONCLUSIONS: Decisional capacity at EOL represents the primary ethical challenge in care of neuro-oncologic patients. Incomplete awareness among surrogate decision makers of patients' prognosis and preferences contributes to communication gaps and dilemmas. Early facilitation of communication between patients, caregivers, and medical providers may prevent or mitigate conflicts and allow the enactment of patients' goals and values.

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.

What Should Clinicians Do When a Patient's Autonomy Undermines Her Being Treated Equitably?

Language and cultural barriers can impede communication between patients and clinicians, exacerbating health inequity. Additional complications can arise when family members, intending to protect their loved ones, ask clinicians to lie or not disclose to patients their diagnoses, prognoses, or intervention options. Clinicians must express respect for patients' and families' cultural, religious, and social norms regarding health care decision making, but they might also be ethically troubled by some decisions' effects on patients' health outcomes. This article suggests strategies for clinicians trying to overcome linguistic and cultural barriers to equitable patient care.

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.

"Please Keep Mom Alive One More Day"-Clashing Directives of a Dying Patient and Her Surrogate.

All medical care providers are legally and ethically bound to respect their patients' wishes. However, as patients lose decision-making capacity and approach end of life, their families or surrogates, who are confronted with grief, fear, self-doubt, and/or uncertainty, may ask physicians to provide treatment that contradicts the patients' previously stated wishes. Our work discusses the legal and ethical issues surrounding such requests and provides guidance for clinicians to ethically and compassionately respond-without compromising their professional and moral obligations to their patients.