"Walk me through the final day": A thematic analysis study on the family caregiver experience of the Medical Assistance in Dying procedure day.

BACKGROUND: Legalization of assisted dying is progressively expanding worldwide. In Canada, the Medical Assistance in Dying Act became law in 2016. As assisted dying regulations evolve worldwide, comprehending its subjective impact and broader consequences, especially on family members, becomes pivotal for shaping practice, policy, and training. AIM: The goal of this study is to understand the experience of family caregivers on the assisted dying procedure day. DESIGN: Qualitative, thematic analysis, research using semi-structured interviews. SETTING/PARTICIPANTS: Family caregivers of patients who received assisted dying in two hospitals in Canada were recruited. Interviews were conducted at least 6 months after patient death. Conceptual saturation was achieved after analyzing 18 interviews. RESULTS: While caregivers expressed gratitude for the availability of Medical Assistance in Dying, they also described the procedure day as potentially jarring and unsettling. We identified five aspects that shaped their experience: attuned support from the clinical team; preparation for clinical details; congruence between the setting and the importance of the event; active participation and ceremony; and pacing and timing of the procedure. Together, these aspects impacted the level of uneasiness felt by caregivers on the procedure day. CONCLUSIONS: This study emphasized the importance of a family-centered approach to delivering Medical Assistance in Dying. It underscored recognizing the needs of family caregivers during the procedure day and offering strategies to ease their experience. Healthcare providers in jurisdictions where assisted dying is legal or deliberated should consider the applicability of these findings to their unique context.

The impact of COVID-19 on the experiences of patients and their family caregivers with medical assistance in dying in hospital.

BACKGROUND: The COVID-19 pandemic and its containment measures have drastically impacted end-of-life and grief experiences globally, including those related to medical assistance in dying (MAiD). No known qualitative studies to date have examined the MAiD experience during the pandemic. This qualitative study aimed to understand how the pandemic impacted the MAiD experience in hospital of persons requesting MAiD (patients) and their loved ones (caregivers) in Canada. METHODS: Semi-structured interviews were conducted with patients who requested MAiD and their caregivers between April 2020 and May 2021. Participants were recruited during the first year of the pandemic from the University Health Network and Sunnybrook Health Sciences Centre in Toronto, Canada. Patients and caregivers were interviewed about their experience following the MAiD request. Six months following patient death, bereaved caregivers were interviewed to explore their bereavement experience. Interviews were audio-recorded, transcribed verbatim, and de-identified. Transcripts were analyzed using reflexive thematic analysis. RESULTS: Interviews were conducted with 7 patients (mean [SD] age, 73 [12] years; 5 [63%] women) and 23 caregivers (mean [SD] age, 59 [11] years; 14 [61%] women). Fourteen caregivers were interviewed at the time of MAiD request and 13 bereaved caregivers were interviewed post-MAiD. Four themes were generated with respect to the impact of COVID-19 and its containment measures on the MAiD experience in hospital: (1) accelerating the MAiD decision; (2) compromising family understanding and coping; (3) disrupting MAiD delivery; and (4) appreciating rule flexibility. CONCLUSIONS: Findings highlight the tension between respecting pandemic restrictions and prioritizing control over the dying circumstances central to MAiD, and the resulting impact on patient and family suffering. There is a need for healthcare institutions to recognize the relational dimensions of the MAiD experience, particularly in the isolating context of the pandemic. Findings may inform strategies to better support those requesting MAiD and their families during the pandemic and beyond.

Perception of roles across the interprofessional team for delivery of medical assistance in dying.

In 2016, Canada joined many jurisdictions worldwide in legalizing Medical Assistance in Dying (MAiD). Given the paucity of qualitative research regarding the involvement of interprofessional health care providers (HCPs) in MAiD, the goal of this study was to better understand how HCPs viewed their role(s). Semi-structured interviews were conducted with 3 pharmacists, 10 nurses, and 8 social workers at an academic hospital in Toronto. Thematic analysis generated six broad themes: 1) Practical/Technical Component, 2) Education, 3) Support, 4) "Part of the Job," 5) "All of the Job," and 6) Lack of Published Information. While nurses and social workers espoused many commonalities, nursing roles were more "in the moment," whereas social workers viewed their roles as beginning earlier and extending after provision of MAiD. There was a spectrum of how participants perceived their role: pharmacists minimized the task of dispensing medications as an insignificant experience, nurses viewed involvement as consistent with their other professional duties (specifically non-MAiD deaths), and social workers described MAiD as a unique opportunity to employ the full gamut of their skills. The study highlights the importance of supporting HCPs through education and information at both regulatory and research levels, recognizing the key roles they play in MAiD.

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.

A framework for critical care triage during a major surge in critical illness.

During the COVID-19 pandemic, many jurisdictions experienced surges in demand for critical care that strained or overwhelmed their healthcare system's ability to respond. A major surge necessitates a deviation from usual practices, including difficult decisions about how to allocate critical care resources. We present a framework to guide these decisions in the hope of saving the most lives as ethically as possible, while concurrently respecting, protecting, and fulfilling legal and human rights obligations. It was developed in Ontario in 2020-2021 through an iterative consultation process with diverse participants, but was adopted in other jurisdictions with some modifications. The framework features three levels of triage depending on the degree of the surge, and a system for prioritizing patients based on their short-term mortality risk following the onset of critical illness. It also includes processes aimed at promoting consistency and fairness across a region where many hospitals are expected to apply the same framework. No triage framework should ever be considered "final," and there is a need for further research to examine ethical issues related to critical care triage and to increase the extent and quality of evidence to inform critical care triage.

RéSUMé: Pendant la pandémie de COVID-19, de nombreuses régions ont connu une augmentation de la demande de soins intensifs qui a mis à rude épreuve ou dépassé la capacité de réponse du système de santé existant. Lors de toute augmentation importante de cette demande, un écart par rapport aux pratiques habituelles est nécessaire, y compris la prise de décisions difficiles sur la façon d'allouer les ressources en soins intensifs. Nous présentons un algorithme pour guider ces décisions dans l'espoir de sauver le plus de vies possibles et ce, de la manière la plus éthique possible, tout en respectant, en protégeant et en remplissant les obligations légales et en matière de droits de l'homme. Cet algorithme a été élaboré en Ontario en 2020-2021 dans le cadre d'un processus de consultation itératif avec divers participants, mais a été adopté dans d'autres juridictions avec quelques modifications. L'algorithme comprend trois niveaux de triage en fonction du degré d'augmentation de la demande, ainsi qu'un système permettant de prioriser les patients en fonction de leur risque de mortalité à court terme après l'apparition d'une maladie grave. Il comporte également des processus visant à promouvoir l'uniformité et l'équité dans une région où de nombreux hôpitaux vont appliquer le même algorithme. Aucun algorithme de triage ne devrait jamais être considéré comme « définitif ¼, et il est nécessaire d'approfondir les recherches pour examiner les questions éthiques liées au triage aux soins intensifs et accroître l'étendue et la qualité des données probantes afin d'éclairer le triage aux soins intensifs.

Improving the Medical Assistance in Dying (MAID) process: A qualitative study of family caregiver perspectives.

OBJECTIVE: The road to legalization of Medical Assistance in Dying (MAID) across Canada has largely focused on legislative details such as eligibility and establishment of regulatory clinical practice standards. Details on how to implement high-quality, person-centered MAID programs at the institutional level are lacking. This study seeks to understand what improvement opportunities exist in the delivery of the MAID process from the family caregiver perspective. METHOD: This multi-methods study design used structured surveys, focus groups, and unstructured e-mail/phone conversations to gather experiential feedback from family caregivers of patients who underwent MAID between July 2016 and June 2017 at a large academic hospital in Toronto, Canada. Data were combined and a qualitative, descriptive approach used to derive themes within family perspectives. RESULT: Improvement themes identified through the narrative data (48% response rate) were grouped in two categories: operational and experiential aspects of MAID. Operational themes included: process clarity, scheduling challenges and the 10-day period of reflection. Experiential themes included clinician objection/judgment, patient and family privacy, and bereavement resources. SIGNIFICANCE OF RESULTS: To our knowledge, this is the first time that family caregivers' perspectives on the quality of the MAID process have been explored. Although practice standards have been made available to ensure all legislated components of the MAID process are completed, detailed guidance for how to best implement patient and family centered MAID programs at the institutional level remain limited. This study provides guidance for ways in which we can enhance the quality of MAID from the perspective of family caregivers.

Second Medical Opinions in End-of-Life Disputes in Critical Care: An Ethics-Based Approach.

Requests for a second medical opinion (SMO) by patients or substitute decision-makers (SDMs) can arise during end-of-life disputes in critical care. Such disagreements between patients or SDMs and physicians often pertain to specific elements of the decision-making process related to withholding or withdrawing of life-sustaining treatments. When these disputes occur in the critical care setting in Canada, practicalities and policy barriers prevent an SDM from obtaining an SMO without support from healthcare providers; moreover, in a majority of these cases the SDM will require the facilitation of a physician who is often the same individual with whom they are in conflict. Institutional and a national society's policy statements propose SMOs as an important component of a conflict resolution process for end-of-life disputes (Bosslet et al. 2015; Singer et al. 2001). However, these policies do not provide specific guidance to physicians on how to fairly consider SMO requests. Given the vulnerable position of patients and their SDMs in the critical care context and in order to promote fairness, physicians should apply consistent standards in deciding whether to facilitate a request for an SMO. To guide physicians' decision-making and inform future policy development, we propose three ethical principles for considering SDM requests for an SMO in critical care at the end of life.

PUBLIC AND PATIENT INVOLVEMENT IN HEALTH TECHNOLOGY ASSESSMENT: A FRAMEWORK FOR ACTION.

OBJECTIVE: As health technology assessment (HTA) organizations in Canada and around the world seek to involve the public and patients in their activities, frameworks to guide decisions about whom to involve, through which mechanisms, and at what stages of the HTA process have been lacking. The aim of this study was to describe the development and outputs of a comprehensive framework for involving the public and patients in a government agency's HTA process. METHODS: The framework was informed by a synthesis of international practice and published literature, a dialogue with local, national and international stakeholders, and the deliberations of a government agency's public engagement subcommittee in Ontario, Canada. RESULTS: The practice and literature synthesis failed to identify a single, optimal approach to involving the public and patients in HTA. Choice of methods should be considered in the context of each HTA stage, goals for incorporating societal and/or patient perspectives into the process, and relevant societal and/or patient values at stake. The resulting framework is structured around four actionable elements: (i) guiding principles and goals for public and patient involvement (PPI) in HTA, (ii) the establishment of a common language to support PPI efforts, (iii) a flexible array of PPI approaches, and (iv) on-going evaluation of PPI to inform adjustments over time. CONCLUSIONS: A public and patient involvement framework has been developed for implementation in a government agency's HTA process. Core elements of this framework may apply to other organizations responsible for HTA and health system quality improvement.

Difficult healthcare transitions: Ethical analysis and policy recommendations for unrepresented patients.

BACKGROUND: In Ontario, Canada, patients who lack decision-making capacity and have no family or friends to act as substitute decision-makers currently rely on the Office of the Public Guardian and Trustee to consent to long-term care (nursing home) placement, but they have no legal representative for other placement decisions. OBJECTIVES: We highlight the current gap in legislation for difficult transition cases involving unrepresented patients and provide a novel framework for who ought to assist with making these decisions and how these decisions ought to be made. RESEARCH DESIGN: This paper considers models advanced by Volpe and Steinman with regard to who ought to make placement decisions for unrepresented patients, as well as current ethical models for analyzing how these decisions should be made. PARTICIPANTS AND RESEARCH CONTEXT: We describe an anonymized healthcare transition case to illustrate the fact that there is no legally recognized decision-maker for placement destinations other than long-term care facilities and to show how this impacts all stakeholders. ETHICAL CONSIDERATIONS: The case provided is an anonymized vignette representing a typical transition case involving an unrepresented patient. FINDINGS: As a result of a gap in provincial legislation, healthcare providers usually determine the appropriate placement destination without a clear framework to guide the process and this can cause significant moral distress. DISCUSSION: We argue for a team decision-making approach in the short term, and a legislative change in the long-term, to respect the patient voice, evaluate benefit and risk, enhance collaboration between healthcare providers and patients, and promote social justice. We believe that our approach, which draws upon the strengths of interprofessional teams, will be of interest to all who are concerned with the welfare and ethical treatment of the patients for whom they care. CONCLUSIONS: One of the main strengths of our recommendation is that it provides all members of the healthcare team (including nurses, social workers, therapists, and others) an increased opportunity to advocate on behalf of unrepresented patients.

Medical assistance in dying and the meaning of care: Perspectives of nurses, pharmacists, and social workers.

Medical Assistance in Dying (MAiD) was legalized in Canada in 2016. While it has generated significant academic interest, the experiences of healthcare workers other than physicians remain understudied. This paper reports on a qualitative study of interprofessional Healthcare Providers (HCPs) involved in the provision of MAiD in order to: (1) characterize providers' views about the care they offer in general; (2) examine whether or not they consider MAiD a form of care; and (3) explore their reasons for viewing or not viewing MAiD as care. Semi-structured qualitative interviews were conducted with ten nurses, eight social workers, and three pharmacists with firsthand experience delivering MAiD at an academic hospital in Toronto, Canada. The study was approved by the hospital's REB. Written informed consent was obtained prior to participation. Codebook thematic analysis and template analysis generated four themes: (1) care as advocacy, (2) care as easing suffering, (3) care as psychosocial, and (4) care as relational. Every participant viewed MAiD as a form of care and drew on these four themes to authenticate MAiD as care. Participants consider MAiD a form of care for patients, families, other healthcare workers, and even themselves. In alternating and composite fashion, they describe MAiD in terms of autonomy, easing suffering, and a kind death for the dying (and those entrusted with their care)-a complex choreography of social discourses and moral logics that refuse to settle into a simple dichotomy of "choice versus care." Participants depict MAiD in many of the same terms and imagery they use to describe the care they offer in general. In light of ongoing social controversies surrounding MAiD, HCPs utilize a range of logics strategically to repel negative attention and enable their participation in what they see as a caring end for their patients.

An ethical framework adapted for infection prevention and control.

OBJECTIVE: The ethical implications of infection prevention and control (IPAC) are recognized, yet a framework to guide the application of ethical principles is lacking. We adapted an ethical framework to provide a systematic approach for fair and transparent IPAC decision making. METHODS: We conducted a literature search for existing ethical frameworks in IPAC. Working with practicing healthcare ethicists, an existing ethical framework was adapted for use in IPAC. Indications were developed for application to practice, with integration of ethical principles and process conditions specifically relevant to IPAC. Practical refinements were made to the framework based on end-user feedback and application to 2 real-world situations. RESULTS: In total, 7 articles were identified that discussed ethical principles within IPAC, but none proposed a systematic framework to guide ethical decision making. The adapted framework, named the Ethical Infection Prevention and Control (EIPAC) framework, takes the user through 4 intuitive and actionable steps, centering key ethical principles that facilitate reasoned and just decision making. In applying the EIPAC framework to practice, weighing the predefined ethical principles in different scenarios was a challenge. Although no hierarchy of principles can apply to all contexts in IPAC, our experience highlighted that the equitable distribution of benefits and burdens, and the proportional impacts of options under review, are particularly important considerations for IPAC. CONCLUSIONS: The EIPAC framework can serve as an actionable ethical principles-based decision-making tool for use by IPAC professionals encountering complex situations in any healthcare context.

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.

Navigating the murky intersection between clinical and organizational ethics: a hybrid case taxonomy.

Ethical challenges that arise within healthcare delivery institutions are currently categorized as either clinical or organizational, based on the type of issue. Despite this common binary issue-based methodology, empirical study and increasing academic dialogue indicate that a clear line cannot easily be drawn between organizational and clinical ethics. Disagreement around end-of-life treatments, for example, often spawn value differences amongst parties at both organizational and clinical levels and requires a resolution to address both the case at hand and large-scale underlying system-level confounders. I refer to issues that contain elements of both clinical and organizational issues as hybrids and propose a new taxonomy to characterize hybrid cases. I contend that salient contextual features of an ethical issue, such as where it is identified, who it impacts and where it is ideally resolved in relation to its scope of impact, should inform procedure. Implementation of a Hybrid taxonomy viewing ethical issues as existing on a continuum furthers that end. The primary goals are to 1) systematize thinking about ethical issues that arise within healthcare delivery institutions and 2) allow the content of the ethical challenge to drive the process, rather than continuing to rely on the traditional binary issue-based choice. Failure to capture the complexity of hybrid situations perpetuates incomplete information and ultimately an inchoate resolution that creates more questions than answers.

High rates of psychiatric comorbidity among requesters of medical assistance in dying: Results of a Canadian prevalence study.

INTRODUCTION: Medical assistance in dying (MAID) was legalized in Canada in 2016. We aimed to characterize the prevalence of psychiatric comorbidity among MAID requesters in order to enhance clinicians' awareness of the potential for psychiatric needs among MAID requesters. METHODS: Using chart review, we retrospectively abstracted demographic, clinical, and psychosocial variables of MAID requesters at our institution, a 638-bed tertiary care center in Toronto, Canada. Patients requesting MAID between June 2016 and April 2019 were included. Psychiatric comorbidity was the primary dependent variable. RESULTS: 155 patients requested MAID during the study period. Among them, 60 (39%) had documented psychiatric comorbidity, most commonly depression (n=44; 73%). Severe mental illness accounted for 10 cases (6.5% of the total sample). Among patients with psychiatric comorbidity, 25 (41.7%) had at least one MAID eligibility assessment conducted by a psychiatrist, compared to 16 (16.8%) patients without psychiatric comorbidity (χ2=11.649, df=1, p=0.001). Among the 10 patients with severe mental illness (SMI), a psychiatrist conducted a MAID eligibility assessment in 8 patients (80%), compared to 17 patients (34%) without SMI (χ2=7.255, df=1, p=0.007). CONCLUSION: Patients with psychiatric comorbidity comprise a substantial proportion of patients requesting MAID. These findings highlight the importance of recognizing the psychiatric needs of MAID requesters and involving psychiatry in MAID assessments when warranted. A gap still exists in understanding which factors are most important in determining the need for psychiatric involvement in MAID assessments. We propose recommendations borne from our clinical experience.

Informed consent: exploring surgical residents' beliefs, attitudes and practices.

Patients rely on the knowledge and skill of the physician proposing treatment to relay information and inform their decision-making. In academic medical centres (AMCs), surgical trainees frequently request consent on behalf of an attending surgeon. There is a paucity of knowledge regarding the frequency of this practice and any associated impacts on surgical trainees. This study poses the following queries: (1) Are surgical residents requesting informed consent (IC) while perceiving themselves to possess insufficient knowledge to facilitate the IC process? (2) If yes, what motivates a resident to request IC with inadequate knowledge? (3) Do residents experience an emotional response? (4) What, if any, support mechanisms are sought? Surgical residents in a Canadian urban AMC (n = 38) completed a survey designed to assess how surgical trainees complete the process of IC as well as probe beliefs and attitudes associated with its execution. This study finds that surgical residents frequently seek consent from patients while perceiving themselves insufficiently informed to discuss the risks and benefits of proposed procedures. The majority of participants (82%) indicated that they had personally requested consent while believing themselves inadequately aware of relevant surgical risks. Surgical trainees see this as a significant issue, feel motivated to complete the IC process due to perceived pressures, experience emotional distress and commonly seek collegial support. A cohort of residents from various surgical departments reported requesting IC while possessing inadequate knowledge to inform patient decision-making. Management of this reality could better ensure that the surgical environment both safeguards patients and enhances trainee education.

Allied Health Care Providers Participating in Medical Assistance in Dying: Perceptions of Support.

This study explored the experience of pharmacists, social workers, and nurses who participated in Medical Assistance in Dying (MAiD) in a tertiary care Canadian hospital. Consenting staff participated in qualitative semistructured interviews, which were then analyzed for thematic content. This article reports on the broad theme of "support" from the perspective of the 3 professions, focusing on the diversity in perceptions of support, how MAiD was discussed within health care teams, feelings of gratuitous or excessive gestures of support, ambivalence over debriefs, and the importance of informal support. While pharmacists and social workers generally felt part of a community that supported MAiD, nurses more often expressed opinions as highly divergent. The key finding across all themes was the central importance of the culture on any unit with respect to MAiD and specifically the role of the unit manager in creating either a positive open space for communication or a more silent or closed space. Nursing noted that in the latter setting many gestures of support were experienced as insincere and counterproductive, as were debriefs. We outline several recommendations for managers based on the study results with the intent of tailoring support for all professionals involved in MAiD.

Suicide Attempt After Determination of Ineligibility for Assisted Death: A Case Series.

Medical assistance in dying (MAID) and similar right-to-die laws are becoming increasingly common in jurisdictions across North America and elsewhere. To be eligible for MAID in Canada, requesters must have a serious illness, intolerable suffering, and a reasonably foreseeable natural death. They must also undergo two assessments to confirm eligibility. Although a growing body of literature now exists to help clinicians understand and support patients around requests for assisted death, a dearth of literature exists on how best to support those patients who are deemed ineligible. Here, we report on a case series of three patients who attempted suicide after being found ineligible for MAID. Two patients were ineligible because they did not appear to have reasonably foreseeable natural death. The third patient was ineligible because of concerns around decisional capacity. All three cases had previous diagnoses of depressive disorders and mild cognitive impairment, and two cases had histories of suicide attempts. In at-risk patients, we speculate that the period surrounding a finding of MAID ineligibility may represent a period of particular vulnerability. Clinicians must be vigilant and prepared for the possibility of heightened risk, including risk of self-harm, after a finding of ineligibility for assisted death.