Perspectives of Canadian health leaders on the relationship between medical assistance in dying and palliative and end-of-life care services: a qualitative study.

BACKGROUND: Medical assistance in dying (MAiD) was legalized in Canada in 2016, but coordination of MAiD and palliative and end-of-life care (PEOLC) services remains underdeveloped. We sought to understand the perspectives of health leaders across Canada on the relationship between MAiD and PEOLC services and to identify opportunities for improved coordination. METHODS: In this quantitative study, we purposively sampled health leaders across Canada with expertise in MAiD, PEOLC, or both. We conducted semi-structured interviews between April 2021 and January 2022. Interview transcripts were coded independently by 2 researchers and reconciled to identify key themes using content analysis. We applied the PATH framework for Integrated Health Services to guide data collection and analysis. RESULTS: We conducted 36 interviews. Participants expressed diverse views about the optimal relationship between MAiD and PEOLC, and the desirability of integration, separation, or coordination of these services. We identified 11 themes to improve the relationship between the services across 4 PATH levels: client-centred services (e.g., educate public); health operations (e.g., cultivate compassionate and proactive leadership); health systems (e.g., conduct broad and inclusive consultation and planning); and intersectoral initiatives (e.g., provide standard practice guidelines across health care systems). INTERPRETATION: Health leaders recognized that cooperation between MAiD and PEOLC services is required for appropriate referrals, care coordination, and patient care. They identified the need for public and provider education, standardized practice guidelines, relationship-building, and leadership. Our findings have implications for MAiD and PEOLC policy development and clinical practice in Canada and other jurisdictions.

The Unspeakable Nature of Death & Dying During Childhood: A Silenced Phenomenon in Pediatric Care.

In pediatric settings, the concept of hope is frequently positioned as a fundamental aspect of care and at odds with the possibility and proximity of death. This arguably fosters silence about death and dying in childhood despite evidence indicating the benefits of open communication at the end of life. In this paper, we describe the unspeakable nature of death and dying in childhood, including its conceptual and clinical causes and dimensions, its persistence, and the associated challenges for children and youth facing critical illnesses, their families, and society. We explore how the tension between hope and death can be reframed and apply our analysis to the context of medical assistance in dying for mature minors in Canada. Considering the lack of related literature, this paper offers initial reflections to form a framework for the unspeakable nature of death and dying in childhood and to advance the crucial need for research.

Early experience with medical assistance in dying in Ontario, Canada: a cohort study.

BACKGROUND: Medical assistance in dying (MAiD) was legalized across Canada in June 2016. Some have expressed concern that patient requests for MAiD might be driven by poor access to palliative care and that social and economic vulnerability of patients may influence access to or receipt of MAiD. To examine these concerns, we describe Ontario's early experience with MAiD and compare MAiD decedents with the general population of decedents in Ontario. METHODS: We conducted a retrospective cohort study comparing all MAiD-related deaths with all deaths in Ontario, Canada, between June 7, 2016, and Oct. 31, 2018. Clinical and demographic characteristics were collected for all MAiD decedents and compared with those of all Ontario decedents when possible. We used logistic regression analyses to describe the association of demographic and clinical factors with receipt of MAiD. RESULTS: A total of 2241 patients (50.2% women) were included in the MAiD cohort, and 186 814 in the general Ontario decedent cohort. Recipients of MAiD reported both physical (99.5%) and psychologic suffering (96.4%) before the procedure. In 74.4% of cases, palliative care providers were involved in the patient's care at the time of the MAiD request. The statutory 10-day reflection period was shortened for 26.6% of people. Compared with all Ontario decedents, MAiD recipients were younger (mean 74.4 v. 77.0 yr, standardized difference 0.18);, more likely to be from a higher income quintile (24.9% v. 15.6%, standardized difference across quintiles 0.31); less likely to reside in an institution (6.3% v. 28.0%, standardized difference 0.6); more likely to be married (48.5% v. 40.6%) and less likely to be widowed (25.7% v. 35.8%, standardized difference 0.34); and more likely to have a cancer diagnosis (64.4% v. 27.6%, standardized difference 0.88 for diagnoses comparisons). INTERPRETATION: Recipients of MAiD were younger, had higher income, were substantially less likely to reside in an institution and were more likely to be married than decedents from the general population, suggesting that MAiD is unlikely to be driven by social or economic vulnerability. Given the high prevalence of physical and psychologic suffering, despite involvement of palliative care providers in caring for patients who request MAiD, future studies should aim to improve our understanding and treatment of the specific types of suffering that lead to a MAiD request.

Olly Olly Oxen Free (or Ally Ally in Free): Playing Hide and Seek in Allocating Resources for Child and Youth Health.

There are powerful arguments for increased investment in child and youth health. But the extent to which these benefits can be realized is shaped by health institutions' priority setting processes. We asked, "What are the unique features of a pediatric care setting that should influence choice and implementation of a formal priority setting and resource allocation process?" Based on multiple sources of data, we created a "made-for-child-health" lens containing three foci reflective of the distinct features of pediatric care settings: the diversity of child and youth populations, the challenges in measuring outcomes and the complexity of patient and public engagement.

Canadian national surveys on pandemic influenza preparations: pre-pandemic and peri-pandemic findings.

BACKGROUND: Prior to the 2009 H1N1 Influenza pandemic, public health authorities in Canada and elsewhere prepared for the future outbreak, partly guided by an ethical framework developed within the Canadian Program of Research on Ethics in a Pandemic (CanPREP). We developed a telephone-based survey based on that framework, which was delivered across Canada in late 2008. In June, 2009, the WHO declared pandemic Phase 6 status and from the subsequent October (2009) until May 2010, the CanPREP team fielded a second (revised) survey, collecting another 1,000 opinions from Canadians during a period of pre-pandemic anticipation and peri-pandemic experience. METHODS: Surveys were administered by telephone with random sampling achieved via random digit dialing. Eligible participants were adults, 18 years or older, with per province stratification approximating provincial percentages of national population. Descriptive results were tabulated and logistic regression analyses used to assess whether demographic factors were significantly associated with outcomes, and to identify divergences (between the pre-pandemic and intra-pandemic surveys). RESULTS: N = 1,029 interviews were completed from 1,986 households, yielding a gross response rate of 52% (AAPOR Standard Definition 3). Over 90% of subjects indicated the most important goal of pandemic influenza preparations was saving lives, with 41% indicating that saving lives solely in Canada was the highest priority and 50% indicating saving lives globally was the highest priority. About 90% of respondents supported the obligation of health care workers to report to work and face influenza pandemic risks excepting those with serious health conditions which that increased risks. Strong majorities favoured stocking adequate protective antiviral dosages for all Canadians (92%) and, if effective, influenza vaccinations (95%). Over 70% agreed Canada should provide international assistance to poorer countries for pandemic preparation, even if resources for Canadians were reduced. CONCLUSIONS: Results suggest Canadians trust public health officials to make difficult decisions, providing emphasis is maintained on reciprocity and respect for individual rights. Canadians also support international obligations to help poorer countries and associated efforts to save lives outside the country, even if intra-national efforts are reduced.

Decision maker perceptions of resource allocation processes in Canadian health care organizations: a national survey.

BACKGROUND: Resource allocation is a key challenge for healthcare decision makers. While several case studies of organizational practice exist, there have been few large-scale cross-organization comparisons. METHODS: Between January and April 2011, we conducted an on-line survey of senior decision makers within regional health authorities (and closely equivalent organizations) across all Canadian provinces and territories. We received returns from 92 individual managers, from 60 out of 89 organizations in total. The survey inquired about structures, process features, and behaviours related to organization-wide resource allocation decisions. We focus here on three main aspects: type of process, perceived fairness, and overall rating. RESULTS: About one-half of respondents indicated that their organization used a formal process for resource allocation, while the others reported that political or historical factors were predominant. Seventy percent (70%) of respondents self-reported that their resource allocation process was fair and just over one-half assessed their process as 'good' or 'very good'. This paper explores these findings in greater detail and assesses them in context of the larger literature. CONCLUSION: Data from this large-scale cross-jurisdictional survey helps to illustrate common challenges and areas of positive performance among Canada's health system leadership teams.

Envisioning Indigenous and biomedical healthcare collaboration at Stanton Territorial Hospital, Northwest Territories.

Background: To improve the quality of care for Indigenous patients, local Indigenous leaders in the Northwest Territories, Canada have called for more culturally responsive models for Indigenous and biomedical healthcare collaboration at Stanton Territorial Hospital.Objective: This study examined how Indigenous patients and biomedical healthcare providers envision Indigenous healing practices working successfully with biomedical hospital care at Stanton Territorial Hospital.Methods: We carried out a qualitative study from May 2018 - June 2022. The study was overseen by an Indigenous Community Advisory Committee and was made up of two methods: (1) interviews (n = 41) with Indigenous Elders, patient advocates, and healthcare providers, and (2) sharing circles with four Indigenous Elders.Results: Participants' responses revealed three conceptual models for Indigenous and biomedical healthcare collaboration: the (1) integration; (2) independence; and (2) revisioning relationship models. In this article, we describe participants' proposed models and examine the extent to which each model is likely to improve care for Indigenous patients at Stanton Territorial Hospital. By surfacing new models for Indigenous and biomedical healthcare collaboration, the study findings deepen and extend understandings of hospital-based Indigenous wellness services and illuminate directions for future research.

Priority setting of ICU resources in an influenza pandemic: a qualitative study of the Canadian public's perspectives.

BACKGROUND: Pandemic influenza may exacerbate existing scarcity of life-saving medical resources. As a result, decision-makers may be faced with making tough choices about who will receive care and who will have to wait or go without. Although previous studies have explored ethical issues in priority setting from the perspective of clinicians and policymakers, there has been little investigation into how the public views priority setting during a pandemic influenza, in particular related to intensive care resources. METHODS: To bridge this gap, we conducted three public town hall meetings across Canada to explore Canadian's perspectives on this ethical challenge. Town hall discussions group discussions were digitally recorded, transcribed, and analyzed using thematic analysis. RESULTS: Six interrelated themes emerged from the town hall discussions related to: ethical and empirical starting points for deliberation; criteria for setting priorities; pre-crisis planning; in-crisis decision-making; the need for public deliberation and input; and participants' deliberative struggle with the ethical issues. CONCLUSIONS: Our findings underscore the importance of public consultation in pandemic planning for sustaining public trust in a public health emergency. Participants appreciated the empirical and ethical uncertainty of decision-making in an influenza pandemic and demonstrated nuanced ethical reasoning about priority setting of intensive care resources in an influenza pandemic. Policymakers may benefit from a better understanding the public's empirical and ethical 'starting points' in developing effective pandemic plans.

Ethical framework for resource allocation during a drug supply shortage.

Drug supply shortages are common in health systems due to manufacturing and other delays. Frequently, shortages are successfully addressed through conservation and redistribution efforts, with limited impact on patient care. However, when Sandoz Canada Inc. announced in February 2012 that it was reducing production of a number of generic injectable drugs at its Quebec facility, the scope and magnitude of the drug supply shortage were unprecedented in Canada. The potential for an extreme scarcity of some drugs raised ethical concerns about patient care, including the need to limit access to some health services. In this article, the authors describe the development and implementation of an ethical framework to promote equitable access to drugs and healthcare services in the context of a drug supply shortage within and across health systems.

Successional dynamics of a 35 year old freshwater mitigation wetland in southeastern New Hampshire.

The long-term ecological success of compensatory freshwater wetland projects has come into question based on follow-up monitoring studies over the past few decades. Given that wetland restoration may require many years to decades to converge to desired outcomes, long-term monitoring of successional patterns may increase our ability to fully evaluate success of wetland mitigation projects or guide adaptive management when needed. In Portsmouth, New Hampshire a 4 ha wetland was constructed in an abandoned gravel quarry as off-site compensatory mitigation for impacts to a scrub-shrub swamp associated with property expansion. Building upon prior evaluations from 1992 and 2002, we conducted a floral survey in 2020 to compare results with prior surveys to document vegetation successional trends over time. In addition, we monitored the avian community throughout the growing season as a measure of habitat quality. The plant community mirrored documented successional trends of freshwater wetland restoration projects as native hydrophytes dominated species composition. Plant species composition stabilized as the rate of turnover, the measurement of succession, declined by nearly half after 17 years. Researchers should consider long-term monitoring of specific sites to better understand successional patterns of created wetlands as we documented long time frames required for the development of scrub-shrub swamps, red maple swamps, and sedge meadows. High species richness was attributed to beaver activity, topographic heterogeneity from Carex stricta tussocks, and the seed bank from the application of peat from the original wetland. Habitat heterogeneity of open water, herbaceous cover, and woody vegetation supports a diverse avian community including 11 wetland dependent species. Although the mitigation project has not created the full area of lost scrub-shrub swamp after 35 years, it has developed a structurally complex habitat and diverse avian community that effectively provides the functions and values of the impacted system.

Evaluating priority setting success in healthcare: a pilot study.

BACKGROUND: In healthcare today, decisions are made in the face of serious resource constraints. Healthcare managers are struggling to provide high quality care, manage resources effectively, and meet changing patient needs. Healthcare managers who are constantly making difficult resource decisions desire a way to improve their priority setting processes. Despite the wealth of existing priority setting literature (for example, program budgeting and marginal analysis, accountability for reasonableness, the 'describe-evaluate-improve' strategy) there are still no tools to evaluate how healthcare resources are prioritised. This paper describes the development and piloting of a process to evaluate priority setting in health institutions. The evaluation process was designed to examine the procedural and substantive dimensions of priority setting using a multi-methods approach, including a staff survey, decision-maker interviews, and document analysis. METHODS: The evaluation process was piloted in a mid-size community hospital in Ontario, Canada while its leaders worked through their annual budgeting process. Both qualitative and quantitative methods were used to analyze the data. RESULTS: The evaluation process was both applicable to the context and it captured the budgeting process. In general, the pilot test provided support for our evaluation process and our definition of success, (i.e., our conceptual framework). CONCLUSIONS: The purpose of the evaluation process is to provide a simple, practical way for an organization to better understand what it means to achieve success in its priority setting activities and identify areas for improvement. In order for the process to be used by healthcare managers today, modification and contextualization of the process are anticipated. As the evaluation process is applied in more health care organizations or applied repeatedly in an organization, it may become more streamlined.

Adolescent Males' Understanding of Infertility as a Long-Term Effect of Cancer Therapy.

Cancer therapy can result in infertility in childhood cancer survivors; however, little is known about how young adolescent males make sense of infertility and potential future parenthood. What's more, research shows that many healthcare professionals in Canada do not discuss fertility preservation (FP) with this vulnerable population. This study examines how male adolescent childhood cancer survivors understand infertility as a long-term effect of cancer treatments. We used a narrative analysis to examine 16 interviews with 14-18-year-old males. The findings from this research illustrate that FP discussions may raise meaningful questions for young men about how they see themselves and construct their identities. The findings also demonstrate that young men's beliefs about FP may be informed by family narratives, and it shows that biological parenthood may be important to adolescent males.

Setting priorities in global child health research investments: guidelines for implementation of CHNRI method.

This article provides detailed guidelines for the implementation of systematic method for setting priorities in health research investments that was recently developed by Child Health and Nutrition Research Initiative (CHNRI). The target audience for the proposed method are international agencies, large research funding donors, and national governments and policy-makers. The process has the following steps: (i) selecting the managers of the process; (ii) specifying the context and risk management preferences; (iii) discussing criteria for setting health research priorities; (iv) choosing a limited set of the most useful and important criteria; (v) developing means to assess the likelihood that proposed health research options will satisfy the selected criteria; (vi) systematic listing of a large number of proposed health research options; (vii) pre-scoring check of all competing health research options; (viii) scoring of health research options using the chosen set of criteria; (ix) calculating intermediate scores for each health research option; (x) obtaining further input from the stakeholders; (xi) adjusting intermediate scores taking into account the values of stakeholders; (xii) calculating overall priority scores and assigning ranks; (xiii) performing an analysis of agreement between the scorers; (xiv) linking computed research priority scores with investment decisions; (xv) feedback and revision. The CHNRI method is a flexible process that enables prioritizing health research investments at any level: institutional, regional, national, international, or global.

Pandemic influenza preparedness: an ethical framework to guide decision-making.

BACKGROUND: Planning for the next pandemic influenza outbreak is underway in hospitals across the world. The global SARS experience has taught us that ethical frameworks to guide decision-making may help to reduce collateral damage and increase trust and solidarity within and between health care organisations. Good pandemic planning requires reflection on values because science alone cannot tell us how to prepare for a public health crisis. DISCUSSION: In this paper, we present an ethical framework for pandemic influenza planning. The ethical framework was developed with expertise from clinical, organisational and public health ethics and validated through a stakeholder engagement process. The ethical framework includes both substantive and procedural elements for ethical pandemic influenza planning. The incorporation of ethics into pandemic planning can be helped by senior hospital administrators sponsoring its use, by having stakeholders vet the framework, and by designing or identifying decision review processes. We discuss the merits and limits of an applied ethical framework for hospital decision-making, as well as the robustness of the framework. SUMMARY: The need for reflection on the ethical issues raised by the spectre of a pandemic influenza outbreak is great. Our efforts to address the normative aspects of pandemic planning in hospitals have generated interest from other hospitals and from the governmental sector. The framework will require re-evaluation and refinement and we hope that this paper will generate feedback on how to make it even more robust.

High performance in healthcare priority setting and resource allocation: A literature- and case study-based framework in the Canadian context.

Priority setting and resource allocation, or PSRA, are key functions of executive teams in healthcare organizations. Yet decision-makers often base their choices on historical patterns of resource distribution or political pressures. Our aim was to provide leaders with guidance on how to improve PSRA practice, by creating organizational contexts which enable high performance. We carried out in-depth case studies of six Canadian healthcare organizations to obtain from healthcare leaders their understanding of the concept of high performance in PSRA and the factors which contribute to its achievement. Individual and group interviews were carried out (n = 62) with senior managers, middle managers and Board members. Site observations and document review were used to assist researchers in interpreting the interview data. Qualitative data were analyzed iteratively with the literature on empirical examples of PSRA practice, in order to develop a framework of high performance in PSRA. The framework consists of four domains - structures, processes, attitudes and behaviours, and outcomes - within which are 19 specific elements. The emergent themes derive from case studies in different kinds of health organizations (urban/rural, small/large) across Canada. The elements can serve as a checklist for 'high performance' in PSRA. This framework provides a means by which decision-makers in healthcare might assess their practice and identify key areas for improvement. The findings are likely generalizable, certainly within Canada but also across countries. This work constitutes, to our knowledge, the first attempt to present a full package of elements comprising high performance in health care PSRA.

Priority setting in hospitals: fairness, inclusiveness, and the problem of institutional power differences.

Priority setting tends to take place in health care settings that are hierarchical and politically complex. Fair processes, as defined for example by Daniels' and Sabin's accountability for reasonableness framework, have been identified as essential for securing socially acceptable priority setting decisions. However, power differences in the decision-making context can pose a serious impediment to fair priority setting in health care organizations. Comparatively little attention has been paid to examining the institutional conditions within which priority setting decisions are made. We review a case study of priority setting in hospital operational planning in Toronto, which had been designed by executive leaders to be broadly inclusive of senior and middle-level clinical and administrative leaders. We report three power differences that arose as limiting factors on the inclusiveness of the priority setting process. We argue that these findings have significant theoretical implications for the accountability for reasonableness framework and propose a fifth condition, the "empowerment condition", which states that there should be efforts to minimise power differences in the decision-making context and to optimise effective opportunities for participation in priority setting.

Evidence, economics and ethics: resource allocation in health services organizations.

Priority setting is a challenge for health services organizations across health systems. Because demand for health services exceeds available resources, health services priorities must be set to ensure resources are used appropriately to meet the community's health needs. Various approaches have been developed to assist decision-makers to set priorities in their organizations. The dominant approaches come from evidence-based medicine, economics and ethics.