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Background: In the dynamic landscape of healthcare, nurses play a crucial role as ethical stewards, responsible for whistleblowing, nurse advocacy, and patient safety. Their duties involve ensuring patient well-being through ethical practices and advocacy initiatives., Aim: This study investigates the ethical responsibilities of nurses regarding whistleblowing and advocacy in reporting concerns about patient safety., Research Design: A cross-sectional study utilized cluster and simple random sampling to gather a representative sample of actively practicing registered nurses. Data collection involved a demographic form, Nurse Whistleblowing Intentions Scale, Nursing Advocacy Scale, and Clinical Decision-Making Scale., Participants and Research Context: The study utilizing a robust sample size determination formula for reliable findings included 96 diverse nurses, predominantly females. Engaged actively in direct patient care across various outpatients clinics. The recruitment process specifically sought individuals with expertise in safety protocols and reporting, contributing to a nuanced understanding of the study's focus., Ethical Considerations: Ethical approval was obtained from the ethics committee of the university and the hospitals involved. Written consent was obtained from the participants. A thorough ethical review was conducted to guarantee participant protection and adherence to ethical principles., Results: Surveyed nurses demonstrated positive whistleblowing (Overall Mean Score: 3.58), high advocacy (Overall Mean Score: 12.2), and nuanced ethical decision-making for patient safety (Overall Mean Score: 15.78). Demographic factors, such as nationality and ethical training, significantly impacted whistleblowing intentions, while age, gender, and ethical training correlated with nursing advocacy behavior. Associations with experience and qualification emerged in ethical decision-making., Conclusion: The gained insights foster targeted interventions, improving ethical practices, advocacy, and informed decision-making in nursing. This study explores the intricate link between demographics and ethical considerations among surveyed nurses, acting as a catalyst for ongoing initiatives to strengthen the ethical foundation in healthcare sector., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Political action has a long history in the health workforce. There are multiple historical examples, from civil disobedience to marches and even sabotage that can be attributed to health workers. Such actions remain a feature of the healthcare community to this day; their status with professional and regulatory bodies is far less clear, however. This has created uncertainty for those undertaking such action, particularly those who are engaged in what could be termed 'contentious' forms of action. This study explored how advocacy and activism were presented in nursing and medical codes of ethics, comparing disciplinary and temporo-spatial differences to understand how such action may be promoted or constrained by codes. The data for this study comes from 217 codes of ethics. Because of the size of the corpus and to facilitate analysis, natural language processing was utilised, which allowed for an automated exploration of the data and for comparisons to be drawn between groups. This was complemented by a manual search and contextualisation of the data. While there were noticeable differences between medical and nursing codes, overall, advocacy, activism and even politics were rarely discussed explicitly in most codes. When such action was spoken about, this was often vague and imprecise with codes speaking of 'political action' and 'advocacy' in general terms. While some codes were far more forthright in what they meant about advocacy or broader political action (i.e., Nursing codes in Denmark, Norway, Canada) more forceful language that spoke in specific terms or in terms of oppositional or specific actions (e.g., civil disobedience or marches) was almost completely avoided. These results are discussed in relation to the broader literature on codes and the normative questions they raise, namely whether such action should be included in codes of ethics at all., (© 2024 The Author(s). Nursing Inquiry published by John Wiley & Sons Ltd.)

Delivering healthcare to undocumented migrants presents a complex challenge for healthcare providers. Integrating advocacy efforts into their daily practices can be ambiguous in practical terms, stemming from the intricate task of addressing the health needs of this population while simultaneously advocating for their health rights within the constraints imposed on them. This study seeks to consolidate findings from literature regarding the advocacy approaches employed by healthcare providers and the correlated ethical challenges. We conducted a scoping review of qualitative literature by systematically searching four databases-PubMed/Medline, Embase, Cinahl, and Cochrane Library. For developing our search strategy, we employed the PICO (Population, Intervention, Comparison, Outcome) scheme. Our analysis followed the qualitative content analysis approach proposed by Graneheim and Lundman. 30 studies were included, revealing a cumulative total of 915 healthcare providers who were interviewed. A total of 30 themes emerged comprising 14 advocacy approaches and 16 ethical challenges. Healthcare providers made a deliberate choice to engage in advocacy, responding to injustices experienced by undocumented migrants. The spectrum of advocacy initiatives varied, encompassing voluntary participation in healthcare provision, empathetic understanding, and healthcare-focused strategies. We also identified numerous correlated ethical challenges, necessitating healthcare providers to strike a balance between their eagerness to assist and their professional competence, respect the autonomy of undocumented migrants, and establish trust with them. These findings not only offer practical guidance for healthcare providers to enhance accessibility to healthcare services for undocumented migrant patients but also foster awareness of the ethical challenges that may arise in their advocacy roles., (© 2024. The Author(s).)

Gender impacts substance use initiation, substance use disorder development, engagement with treatment, and harms related to drug and alcohol use. Using the biopsychosocial model of addiction, this review provides a broad summary of barriers and facilitators to addiction services among women. It also reviews substance use among pregnant and parenting women and approaches to care. Given the increasing rates of substance use among women, there is a need to implement and scale-up gender-responsive addiction programming and pursue advocacy at the policy level that addresses the root drivers of substance use inequities among women., Competing Interests: Conflict of interest None to declare., (Copyright © 2021 Elsevier Inc. All rights reserved.)

Background: Pre-emptive kidney transplantation for end-stage kidney disease in children has many advantages and may lead to the consideration of marginal parent donors., Methods: Using the example of the transplant of a kidney with medullary sponge disease from a parent to the child, we review the ethical framework for working up such donors., Results: The four principles of health ethics include autonomy (the right of the patient to retain control over his/her own body); beneficence (healthcare providers must do all they can do to benefit the patient in each situation); non-maleficence ("first do no harm"-providers must consider whether other people or society could be harmed by a decision made, even if it is made for the benefit of an individual patient) and justice (there should be an element of fairness in all medical decisions). Highly motivated donors may derive significant psychological benefit from their donation and may thus be willing to incur more risk. The transplantation team and, ideally, an independent donor advocate team must make a judgment about the acceptability of the risk-benefit ratio for particular potential donors, who must also make their own assessment. The transplantation team and donor advocate team must be comfortable with the risk-benefit ratio before proceeding., Conclusions: An independent donor advocacy team that focuses on the donor needs is needed with sufficient multidisciplinary ethical, social, and psychological expertise. The decision to accept or reject the donor should be within the authority of the independent donor advocacy team and not the providers or the donor., (© 2021 Wiley Periodicals LLC.)

The SARS-CoV-2 pandemic has highlighted existing systemic inequities that adversely affect a variety of communities in the United States. These inequities have a direct and adverse impact on the healthcare of our patient population. While civic engagement has not been cultivated in surgical and anesthesia training, we maintain that it is inherent to the core role of the role of a physician. This is supported by moral imperative, professional responsibility, and a legal obligation. We propose that such civic engagement and social justice activism is a neglected, but necessary aspect of physician training. We propose the implementation of a civic advocacy education agenda across department, community and national platforms. Surgical and anesthesiology residency training needs to evolve to the meet these increasing demands., Competing Interests: The authors report no conflicts of interest., (Copyright © 2020 Wolters Kluwer Health, Inc. All rights reserved.)

The goal of perinatal medicine is to provide professionally responsible clinical management of the conditions and diagnoses of pregnant, fetal, and neonatal patients. The New York Declaration of the International Academy of Perinatal Medicine, "Women and children First - or Last?" was directed toward the ethical challenges of perinatal medicine in middle-income and low-income countries. The global COVID-19 pandemic presents common ethical challenges in all countries, independent of their national wealth. In this paper the World Association of Perinatal Medicine provides ethics-based guidance for professionally responsible advocacy for women and children first during the COVID-19 pandemic. We first present an ethical framework that explains ethical reasoning, clinically relevant ethical principles and professional virtues, and decision making with pregnant patients and parents. We then apply this ethical framework to evidence-based treatment and its improvement, planned home birth, ring-fencing obstetric services, attendance of spouse or partner at birth, and the responsible management of organizational resources. Perinatal physicians should focus on the mission of perinatal medicine to put women and children first and frame-shifting when necessary to put the lives and health of the population of patients served by a hospital first.

The American Society of Nephrology, the European Renal Association-European Dialysis and Transplant Association and the International Society of Nephrology Joint Working Group on Ethical Issues in Nephrology have identified ten broad areas of ethical concern as priority challenges that require collaborative action. Here, we describe these challenges - equity in access to kidney failure care, avoiding futile dialysis, reducing dialysis costs, shared decision-making in kidney failure care, living donor risk evaluation and decision-making, priority setting in kidney disease prevention and care, the ethical implications of genetic kidney diseases, responsible advocacy for kidney health and management of conflicts of interest - with the aim of highlighting the need for ethical analysis of specific issues, as well as for the development of tools and training to support clinicians who treat patients with kidney disease in practising ethically and contributing to ethical policy-making.

While medical advocacy is mandated as a core professional commitment in a growing number of ethical codes and medical training programs, medical advocacy and social justice engagement are regularly subordinated to traditional clinical responsibilities. This study aims to provide insight into factors that motivate clinician engagement and perseverance with medical advocacy, so as to inform attempts by policymakers, leaders and educators to promote advocacy practices in medicine. Furthermore, this study aims to provide an analysis of the role of medical advocates in systems where patients' rights are perceived to be infringed and consider how we might best support and protect these medical advocates as a profession, by exploring the experiences and perspectives of Australian clinicians defending the health of detained asylum seekers. In this qualitative study thirty-two medical and health professionals advocating on asylum seeker health in immigration detention were interviewed. Transcripts were coded both inductively and deductively from interview question domains and thematically analysed. Findings suggested that respondents' motivations for advocacy stemmed from deeply intertwined professional and personal ethics. Overall, advocacy responses originated from the union of three integral stimuli: personal ethics, proximity and readiness. We conclude that each of these three integral factors must be addressed in any attempt to foster advocacy within the medical profession. In light of current global trends of increasingly protectionist immigration practices, promoting effective physician advocacy may become essential in ensuring patients' universal right to health., Competing Interests: The authors have declared that no competing interests exist.

Charlie Gard (August 4, 2016, to July 28, 2017) was an infant in the United Kingdom who was diagnosed with an encephalopathic form of mitochondrial DNA depletion syndrome caused by a mutation in the RRM2B gene. Charlie's parents raised £1.3 million (∼$1.6 million US) on a crowdfunding platform to travel to New York to pursue experimental nucleoside bypass treatment, which was being used to treat a myopathic form of mitochondrial DNA depletion syndrome caused by mutations in a different gene (TK2). The case made international headlines about what was in Charlie's best interest. In the medical ethics community, it raised the question of whether best interest serves as a guidance principle (a principle that provides substantive directions as to how decisions are to be made), an intervention principle (a principle specifying the conditions under which third parties are to intervene), both guidance and intervention, or neither. I show that the United Kingdom uses best interest as both guidance and intervention, and the United States uses best interest for neither. This explains why the decision to withdraw the ventilator without attempting nucleoside bypass treatment was the correct decision in the United Kingdom and why the opposite conclusion would have been reached in the United States., Competing Interests: POTENTIAL CONFLICTS OF INTEREST: The author has indicated she has no potential conflicts of interest to disclose., (Copyright © 2020 by the American Academy of Pediatrics.)

The case of Jamie Fiske and subsequent public appeals for particular children by President Ronald Reagan represent classic cases in pediatric bioethics in which parents or others publicly appealed for a donor organ for a particular child. These raise questions about the appropriate boundaries for public appeals for a limited resource for a particular child and how the press and medical community should respond to such appeals. Public appeals by parents to advocate for their child to receive a limited resource above others promote rationing by morally irrelevant factors and shift the public focus from the national shortage of organs for transplant to the needs of a particular child. Yet these appeals are understandable and will likely continue. Recognizing this, we consider appropriate responses by the media, transplant community, hospitals, and individual clinicians., Competing Interests: POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose., (Copyright © 2020 by the American Academy of Pediatrics.)

In this article, I review the ethical issues that arise in the allocation of deceased-donor organs to children and young adults. By analyzing the public media cases of Sarah Murnaghan, Amelia Rivera, and Riley Hancey, I assess whether public appeals to challenge inclusion and exclusion criteria for organ transplantation are ethical and under which circumstances. The issues of pediatric allocation with limited evidence and candidacy affected by factors such as intellectual disability and marijuana use are specifically discussed. Finally, I suggest that ethical public advocacy can coexist with well-evidenced transplant allocation if and when certain conditions (morally defensible criteria, expert evidence, nonprioritization of the poster child, and greater advocacy for organ transplantation in general) are met., Competing Interests: POTENTIAL CONFLICT OF INTEREST: The author has indicated she has no potential conflicts of interest to disclose., (Copyright © 2020 by the American Academy of Pediatrics.)

Background: Many patient organisations collaborate with drug companies, resulting in concerns about commercial agendas influencing patient advocacy. We contribute to an international body of knowledge on patient organisation-industry relations by considering payments reported in the industry's centralised 'collaboration database' in Sweden. We also investigate possible commercial motives behind the funding by assessing its association with drug commercialisation., Methods: Our primary data source were 1,337 payment reports from 2014-2018. After extraction and coding, we analysed the data descriptively, calculating the number, value and distribution of payments for various units of analysis, e.g. individual companies, diseases and payment goals. The association between drug commercialisation and patient organisation funding was assessed by, first, the concordance between leading companies marketing drugs in specific diseases and their funding of corresponding patient organisations and, second, the correlation between new drugs in broader condition areas and payments to corresponding patient organisations., Results: 46 companies reported paying €6,449.224 (median €2,411; IQR €1,024-4,569) to 77 patient organisations, but ten companies provided 67% of the funding. Small payments dominated, many of which covered costs of events organised by patient organisations. An association existed between drug commercialisation and industry funding. Companies supported patient organisations in diseases linked to their drug portfolios, with the top 3 condition areas in terms of funding-cancer; endocrine, nutritional and metabolic disorders; and infectious and parasitic disorders-accounting for 63% of new drugs and 56% of the funding., Conclusion: This study reveals close and widespread ties between patient organisations and drug companies. A relatively few number of companies dominated the funding landscape by supporting patient organisations in disease areas linked to their drug portfolios. This commercially motivated funding may contribute to inequalities in resource and influence between patient organisations. The association between drug commercialisation and industry funding is also worrying because of the therapeutic uncertainty of many new drugs. Our analysis benefited from the existence of a centralised database of payments-which should be adopted by other countries too-but databases should be downloadable in an analysable format to permit efficient and independent analysis., Competing Interests: The authors have declared that no competing interests exist.

For many yearsthere has been confusion in the Netherlands about the question of whether doctors are entitled to end the life of incompetent patients with advanced dementia. The euthanasia control commission, the disciplinary courts and the penal court all answered this question differently after a doctor had performed euthanasia on a 74-year-old woman with advanced dementia and an advance directive made at an earlier stage. On 21 April 2020 the Supreme Court provided clarity, at least to a certain extent. This contribution presents an analysis of the decisions made by the Supreme Court and their implications for self-chosen death in patients with advanced dementia.

Recent debates within the autism advocacy community have raised difficult questions about who can credibly act as a representative of a particular population and what responsibilities that role entails. We attempt to answer these questions by defending a set of evaluative criteria that can be used to assess the legitimacy of advocacy organizations and other nonelectoral representatives. With these criteria in hand, we identify a form of misrepresentation common but not unique to autism advocacy, which we refer to as partial representation. Partial representation occurs when an actor claims to represent a particular group of people but appropriately engages with only a subset of that group. After highlighting symbolic and substantive harms associated with partial representation, we propose several strategies for overcoming it.

Patient advocacy organizations (PAOs) are nonprofits dedicated to benefiting patients and their families through activities such as education/counseling and research funding. Although medical drug/device companies may serve as important partners, industry donations may bias the efforts of PAOs. We conducted a retrospective cross-sectional analysis of the Kaiser Health News nonprofit database to identify and characterize otolaryngologic PAOs (n = 32) active in 2016. Among these PAOs, half (n = 16, 50.0%) focused on otologic diseases, and mean total annual revenue was $3.1 million. Among the 15 PAOs (46.9%) with publicly available donor lists, 10 (66.7%) received donations from industry. Few PAOs publicly reported the total amount donated by industry (n = 3, 9.4%) or published policies for mitigating potential financial conflicts of interest with donors (n = 3, 9.4%). Requiring drug and device companies to publicly report donations to PAOs may help patients, providers, and policy makers to better understand advocacy by these influential stakeholders.

Bioethics is a practically oriented discipline that developed to address pressing ethical issues arising from developments in the life sciences. Given this inherent practical bent, some form of advocacy or activism seems inherent to the nature of bioethics. However, there are potential tensions between being a bioethics activist, and academic ideals. In academic bioethics, scholarship involves reflection, rigour and the embrace of complexity and uncertainty. These values of scholarship seem to be in tension with being an activist, which requires pragmatism, simplicity, certainty and, above all, action. In this paper I explore this apparent dichotomy, using the case example of my own involvement in international efforts to end forced organ harvesting from prisoners of conscience in China. I conclude that these tensions can be managed and that academic bioethics requires a willingness to be activist., (© 2019 John Wiley & Sons Ltd.)

Activism and bioethics have enjoyed a somewhat strained relationship. In this paper, I consider activism specifically from the perspective of junior academics. I will argue that although there may be a prima facie duty for bioethicists to be activists, countervailing considerations for junior academics may mean that they, in particular, should refrain from undertaking activist activities. I will argue this on the basis of two key claims. First, I argue that activism may come at a potential cost to the academics who undertake it, and that these costs are potentially of greatest detriment to junior academics undertaking activism. Second, I argue that junior academics are likely to be less effective activists than established academics. Moreover, undertaking activism as a junior academic may prevent one from becoming an effective activist later. Finally, I will discuss the implications of this argument for activist commitments later in one's career., (© 2019 John Wiley & Sons Ltd.)

In this article I begin with an anecdote as a way of exploring just exactly what activism entails. Are we talking about the kind of activism every citizen ought to engage in? Should we confine our topic to activism in health care settings? Just what is activism anyway, and how much and what kind ought bioethicists to engage in? Finally, I consider the possibility that it's perfectly permissible for bioethicists not to be activists of any kind., (© 2019 John Wiley & Sons Ltd.)

Disease advocacy organizations (DAOs) have traditionally focused on raising awareness of rare diseases, providing educational resources to patients, and supporting patients and families. Previous research has described how scientists collaborate with DAOs, but few empirical data are available regarding the extent to which physicians interact with DAOs and how those interactions impact patient care. We conducted a national survey of 230 board-certified pediatric neurologists to assess their engagement with DAOs and their beliefs about the impact of DAOs on patient care. In that context, we evaluated a set of 24 items describing interactions between physicians and DAOs. Exploratory factor analysis produced a 19-item model capturing four types of physician-DAO engagement: (1) accessing or distributing DAO-produced materials (6 items, alpha = 0.80); (2) consulting on DAO activities (5 items, alpha = 0.81); (3) collaborating with DAOs on research activities (6 items, alpha = 0.80); and (4) co-producing scholarly materials with DAOs (2 items, alpha = 0.80). Our data indicate that physicians engage with DAOs in more frequent and diverse ways than has been previously reported. Almost all physicians in our sample had interacted directly with a DAO in some way, from low-effort activities such as visiting a DAO's website to deeper forms of engagement including coauthoring journal articles. These findings may provide a framework for bioethicists to characterize the nature and extent of physician interactions with advocacy organizations, which is critical for evaluating the ethical implications of physician-DAO relationships.

This article explores the links between our roles as academics, advocates, and activists, focusing on our research on treatment decisions for patients in vegetative and minimally conscious states. We describe how our work evolved from personal experience through traditional social science research to public engagement activities and then to advocacy and activism. We reflect on the challenges we faced in navigating the relationship between our research, advocacy, and activism, and the implications of these challenges for our research ethics and methodology-giving practical examples of how we worked with research participants, wrote up case studies and developed interventions into legal debates. We also address the implications of the impact agenda-imposed by the British Research Excellence Framework- for our actions as scholar-activists. Finally, we ask how practicing at the borders of academia, advocacy, and activism can inform research-helping to contextualize, sensitize, and engage theory with practice, leading to a more robust analysis of data and its implications, and helping to ensure a dialogue between research, theory, lived experience, front-line practice, law, and public policy., (© 2019 John Wiley & Sons Ltd.)

The work of a bioethicist carries distinctive responsibilities. Alongside those of any worker, there are responsibilities associated with giving guidance to practitioners, policy makers and the public. In addition, bioethicists are professionally exposed to and required to identify situations of moral trouble, and as a result may find themselves choosing to work as advocates or activists, with responsibilities that are distinct from those generally acknowledged within academia. The requirement for bioethics to make normative judgements entails taking a stance, which means there cannot be a sharp line between 'academic' or 'objective' bioethics, and advocacy/activism, but a continuum of bioethicists' engagement and an associated continuum of responsibilities., (© 2019 John Wiley & Sons Ltd.)

The situation around the seeking of refuge, both in Australia and abroad, has become a core human rights issue of our time, engendering protest and activism from the public, researchers, healthcare professionals and academics. The question remains: do bioethicists have duties to advocate on behalf of such populations, and if so, why? I argue that if our work is founded upon the principle of justice, then we do have such duties, and that our research, in itself, can become a form of advocacy., (© 2019 John Wiley & Sons Ltd.)

Many health professions students struggle with deciding whether and when to challenge their teachers. This graphic memoir, When Good Women Do Nothing , conveys what happened one day in the life of a paramedic student called to help an incarcerated, handcuffed woman in labor who gave birth on a stretcher. The memoir documents numerous clinical and ethical disagreements and decision points throughout the paramedic team's time with this patient., (© 2019 American Medical Association. All Rights Reserved.)

This article sketches a taxonomy of the activities in which bioethics academics engage, including activities that may make their own research more impactful, from little or no engagement outside academia to activism or extreme activism. This taxonomy, the first of its kind, may be useful in determining what obligations bioethics academics have in relation to activism and activities that fall short of activism., (© 2019 John Wiley & Sons Ltd.)

Introduction: Patient advocacy organizations (PAOs) provide patient education, raise public awareness, and influence health policy for a wide range of diseases. These organizations frequently receive financial support form from drug, device, and biotechnology companies. Though PAOs often develop policies to address institutional conflicts of interest arising from industry relations, little is known about the substance of these policies. Methods: We sampled all PAOs that are members of the National Health Council. Using a standardized search strategy, all policies were obtained from each organization if publicly available. We reviewed policies for content related to restrictions on corporate partnerships, disclosure of corporate funding, and governance and monitoring of corporate partnerships. Results: We found that 24 of 47 (51%) organizations had policies that addressed institutional conflict of interest. A total of 9 of those 24 (38%) policies placed any restriction on the types of corporations that the PAO would or would not partner with. While 16 of the 24 (67%) outlined some process for disclosure of the organization's corporate donors, only 5 of 24 (21%) specified a manner for disclosing the financial value of those donations. Further, 15 of the 24 (63%) policies identified the person or persons responsible for approving corporate partnerships. However, 17 (71%) failed to address or specify the person(s) responsible for ongoing review of those partnerships. Conclusion: Nearly half of the organizations studied did not have publicly available conflict of interest policies. Among those that did, few policies had a substantial level of detail or limitations to guard against conflicts of interest.

A 28-year-old woman suffered a traffic accident resulting in severe head injuries with deleterious prognosis. Diagnostics further revealed a hitherto unknown pregnancy, at suspected week 9. Based on the patient's wish to donate organs, brain death protocol confirmed irreversible loss of brain function. Yet, vital pregnancy rendered organ transplantation impossible. Multiple ethical and legal issues arose, from invalidation of established legal care after brain death to the delivery of a healthy child after trauma and long-term critical care. After medicolegal and ethical counselling, pregnancy was sustained, and the goal of organ donation postponed. Critical care focused on foetal homeostasis. At 30+4 weeks, a viable girl was born via assisted vaginal delivery. Postpartal organ donation resulted in heart, kidney and pancreas transplantation. The case emphasises the medical, legal and ethical challenges to combine two apparently diametrical goals: the successful full-term pregnancy and the fulfilment of a patient's wish to donate organs., Competing Interests: Competing interests: None declared., (© BMJ Publishing Group Limited 2019. No commercial re-use. See rights and permissions. Published by BMJ.)

The Brown Human Rights Asylum Clinic (BHRAC) is a medical student-led organization affiliated with Physicians for Human Rights that collaborates with medical and mental health clinicians, lawyers, and community organizations to provide pro bono medical affidavits to undocumented individuals seeking legal status in the United States. Affidavits can document and corroborate the physical and psychological evidence of trauma alleged by asylum seekers, leading to better legal outcomes. This article describes our innovative program, partnerships, and workflow, as well as demographics and statistics from our past seven years of operation. Since its founding in 2013, BHRAC has conducted 55 medical evaluations, the majority involving Spanish-speaking female-identifying individuals from Guatemala, El Salvador, and the Dominican Republic. Thirteen individuals have been granted legal status, one individual was denied status, and the rest of the cases are pending. BHRAC has experienced a marked increase in affidavit requests. This paper serves as a call to action for medical professionals to become involved in this work.

The decision-making process on behalf of unrepresented adults (ie, those who lack capacity to make medical decisions and have no identifiable surrogate) is at risk for not incorporating their interests, raising ethical concerns. We performed semistructured interviews with key stakeholders across multiple sectors in an urban county who participate in the care of or decision-making process for unrepresented adults. This included a safety net healthcare system, social services, and legal services. Participants were healthcare, social service, and legal professionals who worked with unrepresented adults (n = 25). Our interview questions explored the current process for proxy decision making in cases of unrepresented adults and potential alternatives. We recorded, transcribed, and analyzed interviews using the constant comparative method to identify major themes related to ethical challenges if they were raised. Participants grappled with multiple ethical challenges around the care of unrepresented adults. Themes described by participants were: (1) prioritizing autonomy; (2) varying safety thresholds; (3) distributing resources fairly; and (4) taking a moral toll on stakeholders. In conclusion, all stakeholders identified ethical challenges in caring for unrepresented adults. An applied ethical framework that takes these dilemmas into account could improve ethical practice for unrepresented adults and lessen the emotional toll on stakeholders. J Am Geriatr Soc 67:1724-1729, 2019., (© 2019 The American Geriatrics Society.)

Caring for patients who lack decision-making capacity is common in health care and presents numerous practical and ethical challenges. Unrepresented patients are vulnerable in part because they do not have anyone to help articulate their values and preferences, and they cannot do so themselves. This commentary suggests a deliberative approach to responding to these patients' needs., (© 2019 American Medical Association. All Rights Reserved.)

Medical assistance in dying (MAiD) was legalized by the Supreme Court of Canada in June 2016 and became a legal, viable end of life care (EOLC) option for Canadians with irremediable illness and suffering. Much attention has been paid to the balance between physicians' willingness to provide MAiD and patients' legal right to request medically assisted death in certain circumstances. In contrast, very little attention has been paid to the challenge of making MAiD accessible to vulnerable populations. The purpose of this paper was to examine the extant literature and resources that are available on the provision of MAiD in Canada. We found that the provision of EOLC in Canada offers insufficient access to palliative and EOLC options for Canadians and that vulnerable Canadians experience disproportional barriers to accessing these already limited resources. Consequently, we argue that palliative care, hospice care and MAiD must be considered a spectrum of EOLC that is inclusive and accessible to all Canadians. We conclude by imploring Canadian healthcare professionals, policy makers and legislators to consider MAiD as a viable EOLC option for all Canadians.

Background: Informed consent is fundamental to the autonomous decision-making of patients, yet much is still unknown about the process in the clinical setting. In an evolving healthcare landscape, nurses must be prepared to address patient understanding and participate in the informed consent process to better fulfill their well-established role as patient advocates., Research Objective: This study examines hospital-based nurses' experiences and understandings of the informed consent process., Research Design: This qualitative descriptive study utilized a semi-structured interview approach identifying thematic concerns, experiences, and knowledge of informed consent across a selected population of clinically practicing nurses., Participants and Research Context: In all, 20 baccalaureate prepared registered nurses practicing in various clinical settings (i.e. critical care, oncology, medical/surgical) at a large northeastern academic medical center in the United States completed semi-structured interviews and a demographic survey. The mean age of participants was 36.6 years old, with a mean of 12.2 years of clinical experience., Ethical Considerations: Participation in this study involved minimal risk and no invasive measures. This study received Institutional Review Board approval from the University of Pennsylvania. All participants voluntarily consented., Findings: The majority of participants (N = 19) believe patient safety is directly linked to patient comprehension of the informed consent process. However, when asked if nurses have a defined role in the informed consent process, nearly half did not agree (N = 9). Through this qualitative approach, three major nursing roles emerged: the nurse as a communicator, the nurse as an advocate, and the clerical role of the nurse., Discussion and Conclusion: This investigation contributes to the foundation of ethical research that will better prepare nurses for patient engagement, advance current understanding of informed consent, and allow for future development of solutions. Nurses are at the forefront of patient-provider interactions and they are often presented opportunities to learn about and engage in the informed consent process.

End-of-life disputes in Ontario are currently overwhelmingly assessed through the singular lens of patient autonomy. The current dispute resolution mechanism(s) does not adequately consider evidence-based medical guidelines, standards of care, the patient's best interests, expert opinion, or distributive justice. We discuss two cases adjudicated by the Consent and Capacity board of Ontario that demonstrate the over emphasis on patient autonomy. Current health care policy and the Health Care Consent Act also place emphasis on patient autonomy without considering other ethically defensible factors. We argue that current policy and legislation require amendment, and unless there are measures undertaken to modify them, both the quality of care provided and the long-term capabilities of the health care system to remain publicly-funded, comprehensive and equitable, are at stake.

The March-April issue of the Hastings Center Report offers another in a series of articles over the last few years on the structure and the ethics of surrogate decision-making. Here, Daniel Brudney addresses how to help the surrogate deal with a treatment decision. A core insight he offers is that the structure of the surrogate's decision has been misunderstood and the misunderstanding makes the task yet harder. As usually understood, the surrogate is supposed to be guided by the question, what would the patient choose, if the patient were making the choice herself? Brudney argues that this conception is impossible, and that the surrogate's task is instead to consider the patient's best interests, as illuminated in part by the patient's expressed values and past choices. This understanding leads, he argues, to a different guiding question: what could the patient choose, given her values?, (© 2019 The Hastings Center.)

Background:: Clinical investigation is a growing field employing increasing numbers of nurses. This has created a new specialty practice defined by aspects unique to nursing in a clinical research context: the objectives (to implement research protocols and advance science), setting (research facilities), and nature of the nurse-participant relationship. The clinical research nurse role may give rise to feelings of ethical conflict between aspects of protocol implementation and the duty of patient advocacy, a primary nursing responsibility. Little is known about whether research nurses experience unique ethical challenges distinct from those experienced by nurses in traditional patient-care settings., Research Objectives:: The purpose of the study was to describe the nature of ethical challenges experienced by clinical research nurses within the context of their practice., Research Design:: The study utilized a qualitative descriptive design with individual interviews., Participants and Research Context:: Participating nurses (N = 12) self-identified as having experienced ethical challenges during screening. The majority were Caucasian (90%), female (83%), and worked in outpatient settings (67%). Approximately 50% had > 10 years of research experience., Ethical Considerations:: The human subjects review board approved the study. Written informed consent was obtained., Findings:: Predominant themes were revealed: (1) the inability to provide a probable good, or/do no harm, and (2) dual obligations (identity as a nurse vs a research nurse). The following patterns and subthemes emerged: conflicted allegiances between protocol implementation, needs of the participant, desire to advance science, and tension between the nurse-patient therapeutic relationship versus the research relationship., Discussion:: Participants described ethical challenges specific to the research role. The issues are central to the nurse-participant relationship, patient advocacy, the nurse's role in implementing protocols, and/or advancing science., Conclusion:: Ethical challenges related to the specialized role of clinical research nurses were identified. More research is warranted to fully understand their nature and frequency and to identify support systems for resolution.

Background: Questions concerning the parent/ patient's autonomy are seen as one of the most important reasons for requesting Ethics Consultations (ECs). Respecting parent/ patient's autonomy also means respecting the patient's wishes. But those wishes may be controversial and sometimes even go beyond legal requirements. The objective of this case series of 32 ECs was to illustrate ethically challenging parent / patients' wishes during the first stages of life and how the principle of patient's autonomy was handled., Methods: The case series has a qualitative retrospective approach. A documentary sheet was designed de novo and information was gained from EC minutes and medical charts. The cases originate from the following specialties: reproductive medicine, obstetrics and neonatology as well as two interdisciplinary cases., Results: Through the structured EC minutes aspects of patient / parents' wishes could be identified explicitly. Overall the patient / parents' wishes were not supported in 61% of the cases. Central reasons for rejection of patient / parent wishes were mainly the protection of the best interest of the unborn / new-born child as well as the rejection of clinical approaches that were regarded as being substandard treatment., Conclusion: The study shows that treatment decisions in reproductive medicine, obstetrics and neonatology raise substantial ethical questions leading to the request for ethics consultation. The systematic case series presented here gives insight into the ethical reflection carried out to support the clinicians in their decision-making and counselling. It shows that clinicians, after using ethics consultation, make deliberate decisions that do not "automatically" fulfil the treatment requests of the patients and parents (to-be).

Ethics consultants can apply a narrative ethics approach to address ethical challenges that arise in critical situations. This approach recognizes how those involved in the narrative make sense of, keep faith with, and try on new identities and new understanding of their stories. This case study explores the ways in which the stories of patient, provider, and clinical ethics consultant intersect, and considers how the organic nature of the narrative ethics approach allows ethics consultants to navigate the stories of multiple stakeholders as they grapple with complex health care decisions. This essay also suggests that clinical ethics consultants applying the lens of narrative ethics have an obligation to approach consultations with courage, professional humility, intellectual curiosity, and an appreciation for the narratives of as many of the stakeholders as possible (including one's own).

Undocumented immigrants are part of the health care workforce, whether they are eligible to work in the United States through the Deferred Action for Childhood Arrivals (DACA) program or other visa programs or permits. This case commentary considers whether-and if so, when-a clinician should reveal her immigration status to patients. After reviewing the literature on clinician self-disclosure, this commentary discusses how sharing immigration status could benefit the patient-particularly if the clinician has an immigration status that could interrupt care-but could also draw the focus away from the patient, possibly eroding trust between patient and physician. Finally, this commentary addresses mental health burdens experienced by undocumented and "DACA-mented" trainees and considers the roles that hospitals, residency programs, and health professions schools should play to support them., (© 2019 American Medical Association. All Rights Reserved.)

Physicians' advocacy obligations are best understood as going beyond advocacy on behalf of individual patients, which I call the "individualistic view," to include advocacy for intelligent research-based allocation schemes that promote good outcomes and cost-effective care for all patients, which I call the "systemic view." This systemic view includes moving beyond self-interest to promote less-wasteful and more cost-conscious allocation decisions and the setting of priorities at all levels to expand health care access. It includes physician involvement in discussions with patients in the context of clinical care, involvement in the formulation and administration of benefit structures and other allocation policies, and, finally, involvement in promoting public dialogue about health care priorities. This involvement is based on a concept of a deliberative process that can result in "just enough" decisions within systems for the preservation and promotion of health care and other societal goods.