Access to cancer clinical trials for racialised older adults: an equity-focused rapid scoping review protocol.

BACKGROUND: The intersection of race and older age compounds existing health disparities experienced by historically marginalised communities. Therefore, racialised older adults with cancer are more disadvantaged in their access to cancer clinical trials compared with age-matched counterparts. To determine what has already been published in this area, the rapid scoping review question are: what are the barriers, facilitators and potential solutions for enhancing access to cancer clinical trials among racialised older adults? METHODS: We will use a rapid scoping review methodology in which we follow the six-step framework of Arksey and O'Malley, including a systematic search of the literature with abstract and full-text screening to be conducted by two independent reviewers, data abstraction by one reviewer and verification by a second reviewer using an Excel data abstraction sheet. Articles focusing on persons aged 18 and over who identify as a racialised person with cancer, that describe therapies/therapeutic interventions/prevention/outcomes related to barriers, facilitators and solutions to enhancing access to and equity in cancer clinical trials will be eligible for inclusion in this rapid scoping review. ETHICS AND DISSEMINATION: All data will be extracted from published literature. Hence, ethical approval and patient informed consent are not required. The findings of the scoping review will be submitted for publication in a peer-reviewed journal and presentation at international conferences.

Mitigating inequity: ethically prioritizing patients for CAR T-cell therapy.

Manufacturing capacity and institutional infrastructure to deliver chimeric antigen receptor T-cell therapies (CAR-T) are pressured to keep pace with the growing number of approved products and expanding eligible patient population for this potentially life-saving therapy. Consequently, many cell therapy programs must make difficult decisions about which patient should get the next available treatment slot. This situation requires an ethical framework to ensure fair and equitable decision-making. In this perspective, we discuss the application of Accountability for Reasonableness (A4R), a priority-setting framework grounded in procedural justice, to the problem of limited CAR-T slots at our institution. We formed a multidisciplinary working group spanning several hematological malignancies. Through multiple rounds of partner engagement, we used A4R guiding principles to identify 4 main criteria to prioritize patients for CAR-T: medical benefit, safety/risk of complications, psychosocial factors, and medical urgency. Associated measures/tools and an implementation process were developed. We discuss further how ethical principles of fairness and equity demand a consistent approach within health systems that does not disadvantage medically underserved or underrepresented populations and supports overcoming barriers to care. In our commitment to transparency and collaboration, we make our tools available to others, ideally to be used to engage in their own A4R process, adapting the tools to their unique environments. Our hope is that our preliminary work will support the advancement of further study in this area globally, aiming for justice in resource allocation for all potential CAR-T candidates, wherever they may seek care.

Neuro-oncology clinicians' perspectives on factors affecting brain cancer patients' access to medical assistance in dying: A qualitative study.

In most jurisdictions where medical assistance in dying (MAiD) is legal, patients must have decision-making capacity. Brain cancer often damages the cognitive networks required to maintain decision-making capacity. Using qualitative methodology guided by a relational ethics conceptual framework, this study explored neuro-oncology clinicians' perspectives on access to and eligibility for MAiD for patients diagnosed with brain cancer. We interviewed 24 neuro-oncology clinicians from 6 countries. Participants described the unique challenges facing brain cancer patients, potentially resulting in their inequitable access to MAiD. The findings highlight the importance of early end-of-life conversations, advance care planning, and access to end-of-life treatment options.

A Race to the End: Family Caregivers' Experience of Medical Assistance in Dying (MAiD)-a Qualitative Study.

BACKGROUND: The June 2016 legalization of medical assistance in dying (MAiD) provided an added layer of choice to end-of-life care in Canada. Family caregivers play an important role in patient end-of-life decision-making. They may experience unique psychological burden or distress associated with their role. However, we know little about the caregiver experience associated with patient MAiD requests and the nature of psychosocial supports caregivers require before, during, and following MAiD intervention. OBJECTIVE: The objective of this study is to better understand the caregiver experience of MAiD within the Canadian legal landscape following Bill C-14. DESIGN: Caregiver experience was examined based on qualitative, semi-structured interviews. PARTICIPANTS: A total of 22 caregivers of patients who had requested MAiD were interviewed. APPROACH: Transcripts were recorded, transcribed, and analyzed based on grounded theory methodology. KEY RESULTS: The caregiver experience of MAiD within the legal framework was found to be understood as a "race to the end," with the ultimate goal of creating an ideal dying experience for the patient while balancing a threat to capacity that would undermine their access to MAiD. Caregivers can be described within the overarching framework as either co-runners or onlookers. Sources of caregiver distress were linked to these roles. CONCLUSIONS: The "race to the end" theoretical model contributes new knowledge and understanding that can inform the development of tailored support services for caregivers, the impact of legislative changes on this population, and future research examining decision-making near end of life and the caregiver experience.

Neuro-Oncology Clinicians' Attitudes and Perspectives on Medical Assistance in Dying.

BACKGROUND: Medical assistance in dying (MAiD), also known as physician-assisted death, is currently legal in several locations across the globe. Brain cancer or its treatments can lead to cognitive impairment, which can impact decision-making capacity for MAiD. OBJECTIVE: We sought to explore neuro-oncology clinicians' attitudes and perspectives on MAiD, including interpretation of decision-making capacity for patient MAiD eligibility. METHODS: An online survey was distributed to members of national and international neuro-oncology societies. We asked questions about decision-making capacity and MAiD, in part using hypothetical patient scenarios. Multiple choice and free-text responses were captured. RESULTS: There were 125 survey respondents. Impaired cognition was identified as the most important factor that would signal a decline in patient capacity. At least 26% of survey respondents had moral objections to MAiD. Respondents thought that different hypothetical patients had capacity to make a decision about MAiD (range 18%-58%). In other hypothetical scenarios, fewer clinicians were willing to support a MAiD decision for a patient with an oligodendroglioma (26%) vs. glioblastoma (41%-70%, depending on the scenario). Time since diagnosis, performance status, and patient age seemed to affect support for MAiD decisions (Fisher's exact P-values 0.007, < 0.001, and 0.049, respectively). CONCLUSION: While there are differing opinions on the moral permissibility of MAiD in general and for neuro-oncology patients, most clinicians agree that capacity must be assessed carefully before a decision is made. End-of-life discussions should happen early, before the capacity is lost. Our results can inform assessments of patient capacity in jurisdictions where MAiD is legal.

First Ready, First to Go: Ethical Priority-Setting of Allogeneic Stem Cell Transplant at a Major Cancer Centre.

Medical advancements have now made it possible to provide allogeneic stem cell transplantation (allo-SCTs) to older patients and use stem cells from less well-matched donors. This has resulted in access to a life-saving modality for a greater number of patients with imminent life-threatening illnesses. However, resources have not always kept pace with innovation and expanded volumes. During the summer of 2015 in the province of Ontario, Canada, inadequate resources contributed to a capacity crisis, resulting in extended wait-lists for allo-SCT across the province. This situation presented unique ethical challenges, including the need for ongoing negotiations with health system partners and nimble process management to ensure timely delivery of care. This article reports on the process one organization used to determine how to equitably allocate scarce allo-SCT resources. With the ever-expanding landscape of new and emerging medical technologies, our experience has implications for the ethics of translating other increasingly expensive health technologies to clinical care.

SARS and hospital priority setting: a qualitative case study and evaluation.

BACKGROUND: Priority setting is one of the most difficult issues facing hospitals because of funding restrictions and changing patient need. A deadly communicable disease outbreak, such as the Severe Acute Respiratory Syndrome (SARS) in Toronto in 2003, amplifies the difficulties of hospital priority setting. The purpose of this study is to describe and evaluate priority setting in a hospital in response to SARS using the ethical framework 'accountability for reasonableness'. METHODS: This study was conducted at a large tertiary hospital in Toronto, Canada. There were two data sources: 1) over 200 key documents (e.g. emails, bulletins), and 2) 35 interviews with key informants. Analysis used a modified thematic technique in three phases: open coding, axial coding, and evaluation. RESULTS: Participants described the types of priority setting decisions, the decision making process and the reasoning used. Although the hospital leadership made an effort to meet the conditions of 'accountability for reasonableness', they acknowledged that the decision making was not ideal. We described good practices and opportunities for improvement. CONCLUSIONS: 'Accountability for reasonableness' is a framework that can be used to guide fair priority setting in health care organizations, such as hospitals. In the midst of a crisis such as SARS where guidance is incomplete, consequences uncertain, and information constantly changing, where hour-by-hour decisions involve life and death, fairness is more important rather than less.