Ethical dilemmas in prioritizing patients for scarce radiotherapy resources.

BACKGROUND: Radiotherapy is an essential component of cancer treatment, yet many countries do not have adequate capacity to serve all patients who would benefit from it. Allocation systems are needed to guide patient prioritization for radiotherapy in resource-limited contexts. These systems should be informed by allocation principles deemed relevant to stakeholders. This study explores the ethical dilemmas and views of decision-makers engaged in real-world prioritization of scarce radiotherapy resources at a cancer center in Rwanda in order to identify relevant principles. METHODS: Semi-structured interviews were conducted with a purposive sample of 22 oncology clinicians, program leaders, and clinical advisors. Interviews explored the factors considered by decision-makers when prioritizing patients for radiotherapy. The framework method of thematic analysis was used to characterize these factors. Bioethical analysis was then applied to determine their underlying normative principles. RESULTS: Participants considered both clinical and non-clinical factors relevant to patient prioritization for radiotherapy. They widely agreed that disease curability should be the primary overarching driver of prioritization, with the goal of saving the most lives. However, they described tension between curability and competing factors including age, palliative benefit, and waiting time. They were divided about the role that non-clinical factors such as social value should play, and agreed that poverty should not be a barrier. CONCLUSIONS: Multiple competing principles create tension with the agreed upon overarching goal of maximizing lives saved, including another utilitarian approach of maximizing life-years saved as well as non-utilitarian principles, such as egalitarianism, prioritarianism, and deontology. Clinical guidelines for patient prioritization for radiotherapy can combine multiple principles into a single allocation system to a significant extent. However, conflicting views about the role that social factors should play, and the dynamic nature of resource availability, highlight the need for ongoing work to evaluate and refine priority setting systems based on stakeholder views.

Palliative care providers' roles in medical assistance in dying decision-making triads with patients and families: A qualitative analysis.

OBJECTIVES: Research on medical assistance in dying (MAiD) decision-making indicates that family members and close friends are often involved in making decisions with patients and their care providers. This decision-making model comprising patients, family members, and palliative care providers (PCPs) has been described as a triad. The objective of this study is to understand PCPs' experiences engaging in MAiD-related decision-making triads with patients and their families in Canada. METHODS: Semi-structured qualitative interviews were analyzed using interpretive description. RESULTS: We interviewed 48 specialist PCPs in Vancouver (26) and Toronto (22). Interviews were audio-recorded, professionally transcribed, and coded using a coding framework. PCPs take on 5 notable roles in their work with family members around MAiD. They provide emotional support and counseling, balance confidentiality between patients and families, provide education, coordinate support, and mediate family dynamics. SIGNIFICANCE OF RESULTS: PCPs take on multiple roles in working with patients and families to make decisions about MAiD. As patients and families may require different forms of support throughout the MAiD pathway, PCPs can benefit from institutional and interprofessional resources to enhance their ability to support patients and families in decision-making and bereavement.

Procedural fairness for radiotherapy priority setting in a low resource context.

Radiotherapy is an essential component of cancer treatment, yet many countries do not have adequate capacity to serve their populations. This mismatch between demand and supply creates the need for priority setting. There is no widely accepted system to guide patient prioritization for radiotherapy in a low resource context. In the absence of consensus on allocation principles, fair procedures for priority setting should be established. Research is needed to understand what elements of procedural fairness are important to decision makers in diverse settings, assess the feasibility of implementing fair procedures for priority setting in low resource contexts, and improve these processes. This study presents the views of decision makers engaged in everyday radiotherapy priority setting at a cancer center in Rwanda. Semi-structured interviews with 22 oncology physicians, nurses, program leaders, and advisors were conducted. Participants evaluated actual radiotherapy priority setting procedures at the program (meso) and patient (micro) levels, reporting facilitators, barriers, and recommendations. We discuss our findings in relation to the leading Accountability for Reasonableness (AFR) framework. Participants emphasized procedural elements that facilitate adherence to normative principles, such as objective criteria that maximize lives saved. They ascribed fairness to AFR's substantive requirement of relevance more than transparency, appeals, and enforcement. They identified several challenges unresolved by AFR, such as conflicting relevant rationales and unintended consequences of publicity and appeals. Implementing fair procedure itself is resource intensive, a paradox that calls for innovative, context-appropriate solutions. Finally, socioeconomic and structural barriers to care that undermine procedural fairness must be addressed.

Medical assistance in dying legislation: Hospice palliative care providers' perspectives.

BACKGROUND: After over 4 years since medical assistance in dying legalization in Canada, there is still much uncertainty about how this ruling has affected Canadian society. OBJECTIVE: To describe the positive aspects of medical assistance in dying legalization from the perspectives of hospice palliative care providers engaging in medical assistance in dying. DESIGN: In this qualitative descriptive study, we conducted an inductive thematic analysis of semi-structured interviews with hospice palliative care providers. PARTICIPANTS AND SETTING: Multi-disciplinary hospice palliative care providers in acute, community, residential, and hospice care in Vancouver and Toronto, Canada, who have engaged in end-of-life care planning with patients who have inquired about and/or requested medical assistance in dying. ETHICAL CONSIDERATIONS: The research proposal was approved by University of British Columbia Research Ethics Board in Vancouver and University Health Network in Toronto. Participants were informed regarding the research goals, signed a written consent, and were assigned pseudonyms. RESULTS: The 48 participants included hospice palliative care physicians (n = 22), nurses (n = 15), social workers (n = 7), and allied health providers (n = 4). The average interview length was 50 min. Positive aspects of medical assistance in dying legalization were identified at (1) the individual level: (a) a new end-of-life option, (b) patients' last chance to express control over their lives, (c) patient and family comfort and relief, and (d) a unique learning experience for hospice palliative care providers; (2) the team level: (a) supportive collegial relationships, (b) broadened discussions about end-of-life and palliative care, and (c) team debriefs provide opportunities for education and support; and (3) the institutional level: (a) improved processes to facilitate the implementation logistics. CONCLUSION: While being involved in the medical assistance in dying process is complex and challenging, this study sheds light on the positive aspects of medical assistance in dying legalization from the hospice palliative care provider's perspectives. Medical Assistance in Dying legalization has resulted in improved end-of-life conversations between hospice palliative care providers, patients, and their families. Improved communication leads to a better understanding of patients' end-of-life care plans and bridges some of the existing gaps between hospice palliative care and medical assistance in dying.

Moral Distress and Resilience Associated with Cancer Care Priority Setting in a Resource-Limited Context.

BACKGROUND: Moral distress and burnout are highly prevalent among oncology clinicians. Research is needed to better understand how resource constraints and systemic inequalities contribute to moral distress in order to develop effective mitigation strategies. Oncology providers in low- and middle-income countries are well positioned to provide insight into the moral experience of cancer care priority setting and expertise to guide solutions. METHODS: Semistructured interviews were conducted with a purposive sample of 22 oncology physicians, nurses, program leaders, and clinical advisors at a cancer center in Rwanda. Interviews were recorded, transcribed verbatim, and analyzed using the framework method. RESULTS: Participants identified sources of moral distress at three levels of engagement with resource prioritization: witnessing program-level resource constraints drive cancer disparities, implementing priority setting decisions into care of individual patients, and communicating with patients directly about resource prioritization implications. They recommended individual and organizational-level interventions to foster resilience, such as communication skills training and mental health support for clinicians, interdisciplinary team building, fair procedures for priority setting, and collective advocacy for resource expansion and equity. CONCLUSION: This study adds to the current literature an in-depth examination of the impact of resource constraints and inequities on clinicians in a low-resource setting. Effective interventions are urgently needed to address moral distress, reduce clinician burnout, and promote well-being among a critical but strained oncology workforce. Collective advocacy is concomitantly needed to address the structural forces that constrain resources unevenly and perpetuate disparities in cancer care and outcomes. IMPLICATIONS FOR PRACTICE: For many oncology clinicians worldwide, resource limitations constrain routine clinical practice and necessitate decisions about prioritizing cancer care. To the authors' knowledge, this study is the first in-depth analysis of how resource constraints and priority setting lead to moral distress among oncology clinicians in a low-resource setting. Effective individual and organizational interventions and collective advocacy for equity in cancer care are urgently needed to address moral distress and reduce clinician burnout among a strained global oncology workforce. Lessons from low-resource settings can be gleaned as high-income countries face growing needs to prioritize oncology resources.

The Surprise Question and Serious Illness Conversations: A pilot study.

BACKGROUND: Serious Illness Conversations aim to discuss patient goals. However, on acute medicine units, seriously ill patients may undergo distressing interventions until death. OBJECTIVES: To investigate the feasibility of using the Surprise Question, "Would you be surprised if this patient died within the next year?" to identify patients who would benefit from early Serious Illness Conversations and study any changes in the interdisciplinary team's beliefs, confidence, and engagement as a result of asking the Surprise Question. DESIGN: A prospective cohort pilot study with two Plan-Do-Study-Act cycles. PARTICIPANTS/CONTEXT: Fifty-eight healthcare professionals working on Acute Medicine Units participated in pre- and post-intervention questionnaires. The intervention involved asking participants the Surprise Question for each patient. Patient charts were reviewed for Serious Illness Conversation documentation. ETHICAL CONSIDERATIONS: Ethical approval was granted by the institutions involved. FINDINGS: Equivocal overall changes in the beliefs, confidence, and engagement of healthcare professionals were observed. Six out of 23 patients were indicated as needing a Serious Illness Conversation; chart review provided some evidence that these patients had more Serious Illness Conversation documentation compared with the 17 patients not flagged for a Serious Illness Conversation. Issues were identified in equating the Surprise Question to a Serious Illness Conversation. DISCUSSION: Appropriate support for seriously ill patients is both a nursing professional and ethical duty. Flagging patients for conversations may act as a filtering process, allowing healthcare professionals to focus on conversations with patients who need them most. There are ethical and practical issues as to what constitutes a "serious illness" and if answering "no" to the Surprise Question always equates to a conversation. CONCLUSION: The barriers of time constraints and lack of training call for institutional change in order to prioritise the moral obligation of Serious Illness Conversations.

Are we ready for artificial intelligence health monitoring in elder care?

BACKGROUND: The world is experiencing a dramatic increase in the aging population, challenging the sustainability of traditional care models that have relied on in-person monitoring. This debate article discusses whether artificial intelligence health monitoring may be suitable enhancement or replacement for elder care. MAIN TEXT: Internationally, as life expectancy continues to rise, many countries are facing a severe shortage of direct care workers. The health workforce is aging, and replacement remains a challenge. Artificial intelligence health monitoring technologies may play a novel and significant role in filling the human resource gaps in caring for older adults by complementing current care provision, reducing the burden on family caregivers, and improving the quality of care. Nonetheless, opportunities brought on by these emerging technologies raise ethical questions that must be addressed to ensure that these automated systems can truly enhance care and health outcomes for older adults. This debate article explores some ethical dimensions of using automated health monitoring technologies. It argues that, in order for these health monitoring technologies to fulfill the wishes of older adults to age in place and also to empower them and improve their quality of life, we need deep knowledge of how stakeholders may balance their considerations of relational care, safety, and privacy. CONCLUSION: It is only when we design artificial intelligence health monitoring technologies with intersecting clinical and ethical factors in mind that the resulting systems will enhance productive relational care, facilitate independent living, promote older adults' health outcomes, and minimize waste.

Leaving patients to their own devices? Smart technology, safety and therapeutic relationships.

BACKGROUND: This debate article explores how smart technologies may create a double-edged sword for patient safety and effective therapeutic relationships. Increasing utilization of health monitoring devices by patients will likely become an important aspect of self-care and preventive medicine. It may also help to enhance accurate symptom reports, diagnoses, and prompt referral to specialist care where appropriate. However, the development, marketing, and use of such technology raise significant ethical implications for therapeutic relationships and patient safety. MAIN TEXT: Drawing on lessons learned from other direct-to-consumer health products such as genetic testing, this article explores how smart technology can also pose regulatory challenges and encourage overutilization of healthcare services. In order for smart technology to promote safer care and effective therapeutic encounters, the technology and its utilization must be safe. CONCLUSION: This article argues for unified regulatory guidelines and better education for both healthcare providers and patients regarding the benefits and risks of these devices.

ISPOR Code of Ethics 2017 (4th Edition).

As the leading health economics and outcomes research (HEOR) professional society, ISPOR has a responsibility to establish a uniform, harmonized international code for ethical conduct. ISPOR has updated its 2008 Code of Ethics to reflect the current research environment. This code addresses what is acceptable and unacceptable in research, from inception to the dissemination of its results. There are nine chapters: 1 - Introduction; 2 - Ethical Principles respect, beneficence and justice with reference to a non-exhaustive compilation of international, regional, and country-specific guidelines and standards; 3 - Scope HEOR definitions and how HEOR and the Code relate to other research fields; 4 - Research Design Considerations primary and secondary data related issues, e.g., participant recruitment, population and research setting, sample size/site selection, incentive/honorarium, administration databases, registration of retrospective observational studies and modeling studies; 5 - Data Considerations privacy and data protection, combining, verification and transparency of research data, scientific misconduct, etc.; 6 - Sponsorship and Relationships with Others (roles of researchers, sponsors, key opinion leaders and advisory board members, research participants and institutional review boards (IRBs) / independent ethics committees (IECs) approval and responsibilities); 7 - Patient Centricity and Patient Engagement new addition, with explanation and guidance; 8 - Publication and Dissemination; and 9 - Conclusion and Limitations.

The topology, structure and PE interaction of LITAF underpin a Charcot-Marie-Tooth disease type 1C.

BACKGROUND: Mutations in Lipopolysaccharide-induced tumour necrosis factor-α factor (LITAF) cause the autosomal dominant inherited peripheral neuropathy, Charcot-Marie-Tooth disease type 1C (CMT1C). LITAF encodes a 17 kDa protein containing an N-terminal proline-rich region followed by an evolutionarily-conserved C-terminal 'LITAF domain', which contains all reported CMT1C-associated pathogenic mutations. RESULTS: Here, we report the first structural characterisation of LITAF using biochemical, cell biological, biophysical and NMR spectroscopic approaches. Our structural model demonstrates that LITAF is a monotopic zinc-binding membrane protein that embeds into intracellular membranes via a predicted hydrophobic, in-plane, helical anchor located within the LITAF domain. We show that specific residues within the LITAF domain interact with phosphoethanolamine (PE) head groups, and that the introduction of the V144M CMT1C-associated pathogenic mutation leads to protein aggregation in the presence of PE. CONCLUSIONS: In addition to the structural characterisation of LITAF, these data lead us to propose that an aberrant LITAF-PE interaction on the surface of intracellular membranes contributes to the molecular pathogenesis that underlies this currently incurable disease.

You Present like a Drug Addict: Patient and Clinician Perspectives on Trust and Trustworthiness in Chronic Pain Management.

OBJECTIVE: Past research has demonstrated that trust is central to an effective therapeutic relationship, but the role of trust in chronic pain management is not well understood. The objective of this study was to provide an in-depth examination of how adults living with chronic pain negotiate trust and demonstrate trustworthiness with clinicians in therapeutic encounters. METHODS: This qualitative study focused on adults living in an urban setting in British Columbia, Canada. Semi-structured interviews (N = 27) were conducted with participants with chronic low back pain. The results were triangulated by two feedback groups comprising re-contacted interview participants (n = 4) and physicians with expertise in pain and addiction management (n = 6). RESULTS: Grounded theory analysis of the adult patient interviews and feedback groups yielded four major themes: 1) threats to trustworthiness and iatrogenic suffering; 2) communicating the invisible and subjective condition of chronic pain; 3) motive, honesty, and testimony; and 4) stigmatized identities. The following two themes emerged from the analysis of the physician feedback group: 1) challenges of the practice context, and 2) complicated clinical relationships. CONCLUSIONS: We found that perceived trustworthiness is important in therapeutic encounters as it helps to negotiate tensions with respect to subjective pain symptoms, addiction, and prescription opioid use. An attitude of epistemic humility may help both clinicians and patients cultivate a trustworthy clinical environment, manage the challenges associated with uncertain testimony, place trust wisely, and promote optimal pain care.

An exploratory study of interprofessional collaboration in end-of-life decision-making beyond palliative care settings.

As healthcare delivery becomes increasingly interprofessional, it is imperative to identify opportunities for effective collaboration and coordination of care. Drawing on a Canadian qualitative study that adopted a constant comparative method based on the grounded theory approach, we report how healthcare providers' (HCPs) personal experiences and professional roles intersect with system factors in hindering or enhancing their ability to support patients and families in planning for end-of-life (EOL) care. We used a criterion-based sampling strategy and sought HCPs who had direct experience engaging patients and families in complex healthcare decisions on: (1) initiating, withholding, or withdrawing treatment; (2) care planning; and/or (3) discharge planning. Interviews sought to understand what HCPs perceived as individual, (inter)professional, and system factors that might hinder, promote, or enhance support for patients/families. We present four major intersecting themes from in-depth interviews with 28 HCPs across acute, long-term, and community care settings that represent three barriers and one facilitator: discomfort with death and dying, confusion about role responsibility, lack of coordinated care, and importance of interprofessional teamwork. Attending to system power hierarchy, we explore interprofessional strategies to support patients' and families' care experiences and promote team-based decision-making. We recommend an interprofessional team approach to facilitate EOL decision-making across care settings and before death becomes imminent. Increasing educational initiatives and developing tools that focus on interprofessional collaboration may help HCPs to understand each other's roles and perspectives, so that they can work together to provide a more coherent and coordinated approach to EOL decision-making.

Redefining ethical leadership in a 21st-century healthcare system.

Traditional ethical leadership in healthcare concentrated on the oversight of the individual provider-patient relationship. However, as care delivery becomes predominantly team-based and integrated across provider organizations, these ethical frameworks also need to consider meso- and macro-factors within the system. These broader issues require managers and administrative leaders to augment their ethical perspectives beyond current and prospective patients with those of the team, organization, and broader system, where high levels of coordination and oversight are essential. Administrators are increasingly ethically accountable not only for how individual care encounters are conducted (micro level) but also for how the system is organized to deliver and ensure quality care for patients receiving care (meso level) and service populations who turn to them for care when needed (macro level).

[Redéfinir le leadership éthique dans le système de santé du XXIe siècle].

Dans le milieu de la santé, le leadership éthique classique est axé sur la supervision de la relation entre le professionnel de la santé et le patient. Cependant, puisque la prestation des soins dépend désormais essentiellement d'une équipe et qu'elle est intégrée entre organisations de la santé, ces cadres éthiques doivent tenir compte de facteurs mésoscopiques et macroscopiques. En raison de ces enjeux plus vastes, les gestionnaires et les leaders administratifs doivent adopter des perspectives éthiques qui, loin de se limiter aux patients actuels et prospectifs, incluent également l'équipe, l'organisation et l'ensemble du système, où il est essentiel d'assurer un taux élevé de coordination et de surveillance. Les administrateurs ont une responsabilité éthique croissante, non seulement envers le déroulement de chaque rencontre de soins (microscopique), mais également envers l'organisation du système pour prodiguer et garantir des soins de qualité aux patients (mésoscopique) et les services aux populations qui leur demandent des soins lorsqu'elles en ont besoin (macroscopique).

Preventive Ethics Through Expanding Education.

Healthcare institutions have been making increasing efforts to standardize consultation methodology and to accredit both bioethics training programs and the consultants accordingly. The focus has traditionally been on the ethics consultation as the relevant unit of ethics intervention. Outcome measures are studied in relation to consultations, and the hidden assumption is that consultations are the preferred or best way to address day-to-day ethical dilemmas. Reflecting on the data from an internal quality improvement survey and the literature, we argue that having general ethics education as a key function of ethics services may be more important in meeting the contemporaneous needs of acute care settings. An expanded and varied ethics education, with attention to the time constraints of healthcare workers' schedules, was a key recommendation brought forward by survey respondents. Promoting ethical reflection and creating a culture of ethics may serve to prevent ethical dilemmas or mitigate their effects.

The Puck Stops Here: Taking Organizational Accountability Seriously.

This commentary presents an ethical argument and practical suggestions for holding health administrators accountable for quality improvement efforts and results. Using hockey analogies and drawing on evidence from various studies and literature in organizational ethics, it argues that health leaders must promote system performance by ensuring that there is a well-organized delivery system around patients' episodes of care and that all personnel are performing at an acceptable level. Informed by system transformation and successes in the UK, this commentary proposes four strategies to hold leaders accountable: require leaders to be familiar with front-line operations, adopt a service-line approach, evaluate organizational performance by analyzing and publicizing outcome metrics and utilize outcome-based incentives.

What's trust got to do with it? Revisiting opioid contracts.

Prescription opioid abuse (POA) is an escalating clinical and public health problem. Physician worries about iatrogenic addiction and whether patients are 'drug seeking', 'abusing' and 'diverting' prescription opioids exist against a backdrop of professional and legal consequences of prescribing that have created a climate of distrust in chronic pain management. One attempt to circumvent these worries is the use of opioid contracts that outline conditions patients must agree to in order to receive opioids. Opioid contracts have received some scholarly attention, with trust and trustworthiness identified as key values and virtues. However, few articles have provided a critical account of trust and trustworthiness in this context, particularly when there exists disagreement about their role in terms of enhancing or detracting from the patient-physician relationship. This paper argues that opioid contracts represent a misleading appeal to patient-physician trust. Assuming the patient is untrustworthy may wrongfully undermine the credibility of the patient's testimony, which may exacerbate certain vulnerabilities of the person in pain. However, misplaced trust in certain patients may render the physician vulnerable to the potential harms of POA. If patients distrust their physician, or feel distrusted by them, this may destabilise the therapeutic relationship and compromise care. A process of epistemic humility may help cultivate mutual patient-physician trust. Epistemic humility is a collaborative effort between physicians and patients that recognises the role of patients' subjective knowledge in enhancing physicians' self-understanding of their theoretical and practice frameworks, values and assumptions about the motivations of certain patients who report chronic pain.