BACKGROUND:Assisted dying has become an increasingly available option. Limited literature explores how family members disclose a patient's choice of death by Medical Assistance in Dying (MAiD). AIM:To explore how family members handled the disclosure of the patients' choice to pursue MAiD. DESIGN:This qualitative study is part of a larger mixed-methods project examining patient and caregiver experiences with MAiD. Semi-structured interviews with family members of patients who had requested MAiD were conducted shortly after the patient's death and/or approximately 6 months post-death and analyzed using a modified grounded theory methodology. SETTING/PARTICIPANTS:Participants were recruited at two tertiary hospitals in Toronto, Canada. Participants were included if they were identified by the patient requesting MAiD to be a family caregiver. A total of 55 interview transcripts from 43 participants were analyzed. RESULTS:Findings include a core category of 'dynamic disclosure', representing disclosure as an ongoing process informed by two subcategories that influence each other: 'Factors influencing disclosure' and 'Outcomes of disclosure'. 'Factors influencing disclosure' include five subcategories: 'Honoring the patient's choice'; 'Desire to advocate'; 'Navigating the novelty and stigma'; 'Reluctance to speak of death and dying'; and 'Managing sensitive information'. 'Outcomes of disclosure' include four subcategories: 'Validation and acceptance'; 'Peer connection'; 'Criticism, opposition, and silence'; and 'Curiosity and knowledge seeking'. CONCLUSIONS:Disclosure of assisted dying is a complex, evolving process that is influenced by multiple factors. Understanding these factors and potential outcomes of disclosure can help inform healthcare professionals in supporting families throughout the assisted dying process and into bereavement.
The COVID-19 pandemic intensified the burden on informal caregivers, particularly those with dual caregiving roles. This grounded theory study explores the lived experiences of women who simultaneously cared for a hospitalized family member at the end of life and for minor children during the pandemic. We aimed to examine how the intersection of these roles influenced women's experiences during caregiving and into bereavement. We analyzed 11 qualitative interviews with bereaved women caregivers in Toronto, Canada, who simultaneously cared for minor children and a dying family member during the COVID-19 pandemic. Our findings reveal a core category of Caregiving and Grieving in Survival Mode, and show that these caregivers (i) often neglected their own needs due to being pulled into numerous responsibilities; (ii) perceived their children as both sources of motivation yet as adding emotional burden to their caregiving; and (iii) felt isolated due to the need for human touch, making small compassionate gestures from healthcare providers seem meaningful. These findings highlight the compounded challenges of dual caregiving and bereavement under crisis conditions and identify a critical need for tailored support for the vulnerable population of dual caregivers.
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.
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.
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OBJECTIVEThe 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.METHODSWe 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.RESULTSIn 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.CONCLUSIONSThe 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.
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.
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.
In Ontario, discharge planning is an overarching term referring to patient transitions through the healthcare system. Discharge planning encompasses the continuum of care from primary to acute care to post-acute care in the community or an institutional care setting. Due to its impact on related issues such as emergency department wait times, patient flow through the healthcare system has been an area of emphasis. Patients that are in acute care and awaiting discharge to another institutional setting such as a Long Term Care Home are designated as Alternate Level of Care (ALC). Because ALC patients could be receiving the level of care that meets their needs in another setting, this is considered an inefficient use of healthcare resources, and by extension thereby poses resource allocation concerns. In the authors’ experience, clinical ethics consultants are routinely consulted to assist with complex discharge planning cases. While the comprehensive range of ethical issues associated with discharge planning may vary based on the facts of the particular case there are four broad domains of issues that pertain to most acute care discharge planning in Ontario and include: (1) Resource allocation of finite healthcare resources (2) Supporting patient/substitute decision making (3) Moral distress and (4) Procedural fairness. An illustrative case is used to further draw on the four identified domains of issues and demonstrate the practical contributions of clinical ethics consultants to address complex discharge planning cases.
Tocilizumab is an anti-inflammatory medication that acts by inhibiting interleukin-6 (IL-6) and is shown to improve outcomes including mortality in patients hospitalized with COVID-19 requiring supplemental oxygen. Ontario supply of tocilizumab is limited, and tocilizumab demand in Ontario might exceed supply in the near future. A strategy that includes using a fixed, single intravenous dose of 400 mg for eligible patients will help extend available supply and is likely effective in treatment of COVID-19. Sarilumab, another IL-6 inhibitor, can be considered as a substitute. Additional options to consider to optimize tocilizumab use include the use of a provincial dashboard to help monitor and allocate use and estimating supply-to-demand adequacy. Likewise, a centralized allocation lottery system could be employed as soon as predicted demand exceeds supply to help ensure fair allocation. However, other issues may need to be taken into account for allocation decisions, as appropriate.
chemotherapeutic agents classified as severely immunosuppressive, tumor-necrosis factor (TNF) blockers, and other biologic agents that are immunosuppressive or immunomodulatory. These individuals should have a reasonable expectation for 1-year survival prior to getting infected with SARS-CoV-2.
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.
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.
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 (chi(2)=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 (chi(2)=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.
CMAJ | MAY 25, 2021 | VOLUME 193 | ISSUE 21 E771 T he COVID-19 pandemic has revealed weaknesses in global manufacturing and distribution of medications, exacerbating many pre-existing limitations and inequities in drug supply and creating new shortages.1–3 Supply chains have been disrupted4 as many were designed for “just-in-time” management of drug inventory to reduce the costs of storage and reduce the risk of drug expiration.1 The pandemic has also led to vastly increased demand for certain medications, including the highly publicized drug hydroxychloroquine,5 which proved to be ineffective in the treatment of COVID-19, and adjunctive medications required for the care of critically ill patients such as sedatives and analgesics.1,2 The problem of mismatched supply and demand can be exacerbated by people and institutions hoarding drugs in times of supply uncertainty.1,2,6 The emergence of SARS-CoV-2 prompted testing of many newly developed or existing repurposed therapies as treatments for COVID-19. Expecting drug manufacturers to increase the supply of all candidate therapies or health care providers to stockpile inventory before drugs are proven effective would be unreasonable. Thus, when a new drug is shown to be effective, there will likely be at least a temporary shortage of supply unless it is already widely available. Medications are at greatest risk for prolonged shortage when their demand surges unexpectedly and manufacturing and distribution are not diversified. Tocilizumab is an interleukin-6 receptor antagonist that has recently been found to reduce mortality in patients hospitalized for COVID-19.7 As the number of patients admitted to hospital with COVID-19 in Canada increases, demand for tocilizumab is on the rise and supply is likely inadequate. We show how a health system can estimate demand for a novel therapy and assess the supply. We then discuss how the harms of drug shortage may be mitigated through use of an ethical policy framework, using tocilizumab as a case study to illustrate the potential for acute drug shortage.8
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.
BACKGROUND:In June 2016, the Government of Canada passed Bill C-14 decriminalizing medically assisted death. Increasing numbers of Canadians are accessing medical assistance in dying (MAiD) each year, but there is limited information about this population.OBJECTIVE:To describe the characteristic outcomes of MAiD requests in a cohort of patients at an academic tertiary care center in Toronto, Ontario, Canada.METHODS:A retrospective chart review of patients making a formal request for a MAiD eligibility assessment from July 16 to September 18. Data extracted included demographics, diagnosis, psychosocial characteristics, information relating to the MAiD request, and clinical outcome.RESULTS:We received 107 formal requests for MAiD assessment. Ninety-seven patients were found eligible, of whom 80 received MAiD. Cancer was the primary diagnosis for 78% and median age was 74 years. The majority of patients (64%) cited "functional decline or inability to participate in meaningful activities" as the main factor motivating their request for MAiD. Half of patients who received MAiD (46%) described their request as consistent with a long-standing, philosophical view predating their illness. The 10-day reflection period was reduced for 39% of provisions due to impending loss of capacity. Our cohort was very similar demographically to those described both nationally and internationally.CONCLUSION:Patients seeking MAiD at our institution were similar to those described in other jurisdictions where assisted dying is legal and represent a group for whom autonomy and independence is critical. We noted a very high rate of risk of loss of capacity, suggesting a need for both earlier assessments and regular monitoring.
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.
BACKGROUND Bill C-14, the legislation that legalized medical assistance in dying (MAiD) in Canada in 2016, outlines eligibility criteria and includes both a mandated 10-day reflection period and a requirement that the patient have capacity to consent at the time MAiD is provided. We examined clinical factors associated with shortened reflection periods or loss of capacity before provision of MAiD. METHODS This retrospective database review involved patients who requested MAiD at a tertiary care hospital in Toronto, Canada, between June 2016 and April 2019. We used logistic regression analyses to examine the association between the combined outcome of unanticipated loss of decisional capacity, shortening of the reflection period or death and the clinical risk factors of interest (age, sex, location of MAiD request [inpatient v. outpatient], score on palliative performance scale [PPS] and diagnosis [cancer v. noncancer]). We generated receiver operating characteristic curves to identify the PPS score (encompassing 5 functional domains: ambulation, activity level, self-care, intake and level of consciousness) that best predicted loss of capacity, shortening of the reflection period or death. RESULTS In total, 155 patients requested assessment for MAiD, and 136 of these were included in the statistical analyses. For 68 patients, the reflection period was not shortened; the other 68 patients lost capacity, died or required shortening of the reflection period. In contrast to the results for age, sex, location of request and diagnosis, the PPS score was associated with loss of capacity or shortening of the reflection period (odds ratio 4.63, 95% confidence interval 2.87-8.23, per 10-point decrease in PPS score). PPS scores less than or equal to 40% balanced sensitivity, specificity and negative predictive value while emphasizing sensitivity to prevent false negative errors. INTERPRETATION The PPS score at the time of MAiD request was strongly associated with loss of capacity or shortening of the reflection period, with lower scores incrementally increasing the risk of these outcomes. For patients with a PPS score of 40% or below, close monitoring is warranted, potentially with plans made to allow rapid provision of MAiD should their clinical condition deteriorate.