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.

Use of palliative sedation following Medical Assistance in Dying (MAiD) legislation: A mixed-methods study of palliative care providers.

OBJECTIVES: Palliative sedation (PS) and Medical Assistance in Dying (MAiD) are options for end-of-life (EOL) care in Canada, since the latter was legalized in 2016. Little research to date has explored the potential impact of MAiD on PS practices. This study investigated physicians' perceptions of their practices surrounding PS and how they may have changed since 2016. METHODS: A survey (n=37) and semi-structured interviews (n=23) were conducted with palliative care providers throughout Ontario. Questions focused on PS practices and explored potential changes following the implementation of MAiD. Codes were determined collaboratively and applied line-by-line by 2 independent investigators. Survey responses were analyzed alongside interview transcripts and noted to be concordant. Themes were generated via reflexive thematic analysis. RESULTS: Thematic analysis yielded the following themes: (1) Increased patient/family knowledge of EOL care; (2) More frequent/fulsome discussions; (3) Normalization/repositioning of PS; and (4) Conflation and differentiation of PS/MAiD. Across these themes, participants espoused increased patient, family, and provider comfort with PS, which may stem equally from the advent of MAiD and the growth of palliative care in general. Participants also emphasized that, following MAiD, PS is viewed as a less radical intervention. SIGNIFICANCE OF RESULTS: This is the first study to investigate physicians' perspectives on the impact of MAiD on PS. Participants strongly opposed treating MAiD and PS as direct equivalents, given the differences in intent and eligibility. Participants stressed that MAiD requests/inquiries should prompt individualized assessments exploring all avenues of symptom management - the results of which may or may not include PS.

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.

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.

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.

Medical Assistance in Dying (MAiD): A Descriptive Study From a Canadian Tertiary Care Hospital.

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.

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.

High scores on the Edmonton Symptom Assessment Scale identify patients with self-defined high symptom burden.

The terms symptom burden and symptom distress are frequently seen in palliative care literature yet are used in multiple ways ranging from addition of symptom scores to more in-depth assessments of interference in function. Patient input to date has had little role in these varied definitions yet previous reviews have suggested the importance of such input. This mixed qualitative and quantitative prospective study was conducted to seek patient input into the definition of 'symptom burden' and to correlate burden self-ranked scores with symptom scores on the Edmonton Symptom Assessment Scale (ESAS). Results suggest that patients with advanced disease followed by palliative care providers are a group with a high level of self-defined burden. Further, any patient rating one or more symptoms on the ESAS ≥7 is at high risk of self-defined burden and likely to be experiencing significant impact on physical, emotional and social functioning. Further work should look at which aspects of symptom management best promote a lessening of perceived burden.

A single set of numerical cutpoints to define moderate and severe symptoms for the Edmonton Symptom Assessment System.

Symptom intensity in cancer and palliative care patients is frequently assessed using a 0-10 ranking score. Results are then often grouped into verbal categories (mild, moderate, or severe) to guide therapy. Numerical cutpoints separating these categories are often variable, with previous work suggesting different cutpoints across different symptoms, which is unwieldy for clinical use. The Edmonton Symptom Assessment Symptom (ESAS) assesses nine common symptoms using this 0-10 scale. The primary aim of this study was to examine the relationship between the numerical and verbal scores using the ESAS and to identify a single cutpoint to separate severe from nonsevere symptomatology. A second goal was to similarly identify a cutpoint to separate moderate or severe from none or mild symptom intensity. Consenting patients (n=400) completed both a standard ESAS and an identical form that replaced 0-10 with none, mild, moderate, and severe. Receiver operating characteristic curves were generated to identify the best fit between sensitivity and specificity. For the "severe" ranking, six symptoms had a best fit of 7, with sensitivity for the remaining three symptoms still greater than 80%. For the combined grouping of moderate or severe, results were less uniform. A cutpoint of either 4 or 5 would be supported by our data, with a greater sensitivity using 4 and improved specificity using 5 as the cutpoint. Across all ESAS symptoms, then, 7 or higher represents a severe symptom by patient definition, whereas a cutpoint of either 4 or 5 could reasonably define combined moderate and severe symptoms.