Patient experiences with requests for medical assistance in dying: Perspectives of those with complex chronic conditions.

OBJECTIVE: To explore experiences of patients who have complex chronic conditions (CCCs), such as fibromyalgia and chronic fatigue syndrome, when they request medical assistance in dying (MAID) in Canada. DESIGN: Qualitative study using semistructured interviews. SETTING: Canada. PARTICIPANTS: Individuals with CCCs who had contacted any 1 of 4 advocacy organizations between January 21, 2021, and December 20, 2022, about requesting MAID for suffering related to CCCs or who had applied and been assessed for MAID. METHODS: Interviews were conducted virtually (by video or audio) and recordings were transcribed. Thematic analysis was conducted in an iterative manner with abductive analysis. As interviews were completed, transcripts were reviewed and emerging themes were discussed at regular intervals. MAIN FINDINGS: Sixteen individuals were interviewed. All spoke of long-lasting suffering that was unresponsive to an array of medical treatments. Although some participants had hoped to receive MAID immediately following the 90-day assessment period, many mentioned that approval would provide or had provided validation of their illness and a sense of control, especially should their illness become unbearable. Participants sharply distinguished between MAID and suicide, saying they preferred MAID because it offered greater certainty and caused less emotional pain to others. Many said that participating in this research was beneficial because they believed the interviewers truly listened to them. CONCLUSION: Participants described experiences with CCCs and requests for MAID. This information may provide family doctors with new insight to inform interactions with patients with CCCs.

Are unmet needs driving requests for Medical Assistance in Dying (MAiD)? A qualitative study of Canadian MAiD providers.

In this study, 20 medical assistance in dying (MAiD) providers were interviewed about their experience when assessing patients with unmet needs, including medical, financial or social needs. Collectively they had experience with over 3700 MAiD assessments and found that unmet needs were rare. In the cases where patients had unmet needs, these were usually related to loneliness and poverty. This led to the ethical dilemma of providers deciding to honor their wishes for MAiD, knowing that some of their suffering was due to society's failure to provide for them.

Medical assistance in dying when natural death is not reasonably foreseeable: Survey of providers' experiences with patients making track 2 requests.

OBJECTIVE: To describe clinicians' experiences with assessing patients making track 2 requests for medical assistance in dying (MAID) and providing MAID to such patients in the first 6 months after Canada amended relevant legislation in March 2021 to expand access to MAID. DESIGN: Online survey with closed and open-ended questions about clinicians' experiences with individual patients making track 2 MAID requests. SETTING: Canada. PARTICIPANTS: Doctors and nurse practitioners who were members of the Canadian Association of MAID Assessors and Providers. MAIN OUTCOME MEASURES: The most common reasons patients gave for making track 2 MAID requests and the challenges providers identified in doing these assessments. RESULTS: Twenty-three MAID providers submitted information about 54 patients who had made track 2 requests between March 17, 2021 and September 17, 2021. The most common diagnoses were chronic pain syndromes, affecting 28 patients (51.9%), and complex chronic conditions such as myalgic encephalomyelitis or chronic fatigue syndrome, affecting 8 patients (14.8%). The most common challenges providers reported were related to patients having concurrent mental illness, noted in 37 assessments (68.5%). In 8 cases (14.8%), providers faced challenges in finding experts to help with assessments. In 19 cases (35.2%), providers felt patients had not been offered all appropriate and available treatments, and in 9 cases (16.7%) providers encountered difficulties in finding such treatments for patients. CONCLUSION: Providers of MAID described many challenges in their experiences with patients making track 2 requests, including assessing individuals with concurrent mental illnesses, being uncertain that patients had been offered appropriate treatments prior to seeking MAID, and being unsure whether patients had seriously considered available treatments. Many providers experienced moral distress in attempting to balance patients' rights with what might be in patients' best interests. This is different from experiences providers have had with patients making track 1 requests, as most of these patients have end-stage malignancy or organ failure and seldom have unmet health care needs. This information could be used to enhance education and support for clinicians as they help patients with track 2 requests access their right to peaceful deaths.

Forced and chosen transfers for medical assistance in dying (MAiD) before and during the COVID 19 pandemic: A mixed methods study.

The purpose of this study was to describe the experience of people who transferred locations for MAiD. It used mixed methods with a chart review from one health authority and interviews with key informants across Canada. In the chart review, we found that of 444 MAiD deaths, 42 (9.5%) were forced to transfer due to the religious affiliation of the facility and 33 (7.4%) chose to transfer. In 23 interviews with 18 key informants we found that the most important theme was the suffering caused by forced transfers. COVID-19 restrictions led to fewer choices and more suffering.

The experience of volunteer witnesses for Medical Assistance in Dying (MAiD) requests.

Many jurisdictions with legal forms of assisted dying require that written requests be witnessed by independent witnesses. In Canada, a unique program of volunteers was founded to make such witnesses available. A total of 106 volunteers completed a questionnaire about their experiences, challenges, and perspectives; 24 were also interviewed. Although the witnesses felt well prepared for their roles, they encountered challenges including role uncertainty, communication difficulties, and the emotional impacts of being with suffering patients and their grieving families. Most felt that the requirement for independent witnesses is an intrusive and unnecessary barrier to accessing medical assistance in dying.

How can we improve the experiences of patients and families who request medical assistance in dying? A multi-centre qualitative study.

BACKGROUND: Medical assistance in dying has been available in Canada for 5 years, but it is unclear which practices contribute to high-quality care. We aimed to describe patient and family perspectives of quality of care for medical assistance in dying. METHODS: We conducted a multi-centre, qualitative descriptive study, including face to face or virtual one-hour interviews using a semi-structured guide. We interviewed 21 english-speaking patients found eligible for medical assistance in dying and 17 family members at four sites in Canada, between November 2017 and September 2019. Interviews were de-identified, and analyzed in an iterative process of thematic analysis. RESULTS: We identified 18 themes. Sixteen themes were related to a single step in the process of medical assistance in dying (MAID requests, MAID assessments, preparation for dying, death and aftercare). Two themes (coordination and patient-centred care) were theme consistently across multiple steps in the MAID process. From these themes, alongside participant recommendations, we developed clinical practice suggestions which can guide care. CONCLUSIONS: Patients and families identified process-specific successes and challenges during the process of medical assistance in dying. Most importantly, they identified the need for care coordination and a patient-centred approach as central to high-quality care. More research is required to characterize which aspects of care most influence patient and family satisfaction.

Perceptions and Experiences of Medical Assistance in Dying Among Illicit Substance Users and People Living in Poverty.

Since medical assistance in dying (MAiD) became legal in Canada in 2016, there have been concerns about vulnerable people feeling pressured to end their lives. It is important to understand what people in marginalized communities know and feel about MAiD in order to help prevent any pressure to hasten death and to prevent any barriers to accessing assisted death. This qualitative study explored the perceptions and experiences of MAiD and other end-of-life care options with 46 people who were illicit substance users, living in poverty, or who worked with marginalized people in these communities. Six broad themes were identified: the importance of family, friends, and community; the effects of the opioid crisis; barriers to accessing end-of-life care services; support for MAiD; the difference between suicide and MAiD; and what constitutes a good death. Findings from this research may be used to help inform future legislation, professional guidelines, and standards of best practice.

Suicide vs medical assistance in dying (MAiD): A secondary qualitative analysis.

This is a secondary analysis of three qualitative studies about MAiD in which researchers asked about the differences between suicide and MAiD. In all, researchers interviewed 52 Canadians; 7 were people who had requested MAiD and had been found ineligible, 6 were MAiD providers and 39 were socially and economically marginalized. The overwhelming response was that MAiD is better than suicide in the context of suffering at the end of life. Whereas these people perceived suicide as uncertain, difficult, and something that was usually done alone and without support, they thought MAiD was certain, painless, and more socially acceptable.

Reasons for requesting medical assistance in dying.

OBJECTIVE: To review the charts of people who requested medical assistance in dying (MAID) to examine their reasons for the request. DESIGN: Retrospective chart survey. SETTING: British Columbia. PARTICIPANTS: Patients who requested an assisted death and were assessed by 1 of 6 physicians in British Columbia during 2016. MAIN OUTCOME MEASURES: Patients' diagnoses and reasons for requesting MAID. RESULTS: Data were collected from 250 assessments for MAID: 112 of the patients had assisted deaths, 11 had natural deaths, 35 were assessed as not eligible for MAID, and most of the rest were not ready. For people who had assisted deaths, disease-related symptoms were given as the first or second most important reason for requesting assisted death by 67 people (59.8%), while 59 (52.7%) gave loss of autonomy, 55 (49.1%) gave loss of ability to enjoy activities, and 27 (24.1%) gave fear of future suffering. People who were assessed as eligible but who had not received assisted deaths were more likely to list fear of future suffering (33.7% vs 7.1%) and less likely to list disease-related symptoms (17.4% vs 40.2%) than those who received MAID were. There was a difference in reasons for MAID given by people with different diagnoses; disease-related symptoms were given as the most important reason by 39.0% of patients with malignancies, 6.8% of patients with neurological diseases, and 28.9% of patients with end-organ failure. Loss of autonomy was given as the most important reason by 16.0% of patients with malignancies, 36.4% of patients with neurological diseases, and 23.7% of patients with end-organ failure. CONCLUSION: This study shows that the reasons patients give for requesting an assisted death are similar to those reported in other jurisdictions with similar laws, but in different proportions. Loss of autonomy and loss of ability to enjoy activities were less common reasons among patients in this study compared with other jurisdictions. This might be related to the method of data collection, as in this study, the patients' reasons were recorded by physicians.

Experiences and perspectives of people who pursued medical assistance in dying: Qualitative study in Vancouver, BC.

OBJECTIVE: To explore the experiences, wishes, fears, and beliefs of people who requested and were eligible for medical assistance in dying (MAID) in Canada in the first year after legalization. DESIGN: Qualitative study using semistructured interviews. SETTING: A clinic in Vancouver, BC, that provides MAID. PARTICIPANTS: People requesting and eligible for MAID between February 6 and December 17, 2016. Family and friends who were identified as the patients' primary support people were also interviewed. METHODS: Semistructured interviews were conducted over the telephone, by e-mail, or in person. The interviews were audiorecorded and transcribed and then analyzed using thematic qualitative analysis. The investigators read the transcripts and created a coding scheme to identify themes in the patients' experiences. The identified themes were compiled and evaluated in the context of what is already known based on current literature. Basic demographic characteristics were recorded for context. MAIN FINDINGS: Of the 23 patients whose experiences were explored, most had a malignancy, a neurologic disorder, or organ failure. A main theme was that patients thought it was important to have autonomy and control over their own end-of-life decisions. Main reasons for requesting MAID were a self-perceived unacceptable quality of life, most commonly owing to loss of independence, mobility, ability to communicate, a sense of purpose, and participation in meaningful activity. Some people expressed fear of future suffering and future disability. Pain was seldom mentioned as a cause of suffering. Some participants believed they could discuss their decision with the people in their lives while others chose to keep it a private matter. Most people were not religious. CONCLUSION: The participants' reasons for choosing to pursue MAID were consistent with those of people in other jurisdictions that have been studied. They felt confident in their decision to pursue MAID and did not have fears about the process.

Exploring the experience of supporting a loved one through a medically assisted death in Canada.

OBJECTIVE: To explore the experience of family and close friends of patients seeking medical assistance in dying (MAID) in Canada. DESIGN: Qualitative study using semistructured interviews. SETTING: A clinic in Vancouver, BC, that provides MAID services. PARTICIPANTS: Eighteen support people for patients seeking MAID. METHODS: Clinic patients seeking MAID identified their primary support people during consultations for an assisted death evaluation. Identified support people were invited to participate in the study, and those who were interested were asked to contact the interviewers. Semistructured interviews were conducted, transcribed, coded, and subjected to content analysis to elucidate common themes. MAIN FINDINGS: All participants were supportive of their loved one's wish for assisted death and they provided emotional and practical support in preparation for MAID. Support persons talked about the journey they went through from their loved one's diagnosis to the MAID request to the actual death. Some were initially opposed but changed their minds after seeing the suffering their loved ones endured. The time before the assisted death involved saying goodbye and, for some, ceremonial rituals (celebration of life, poems, singing, etc). Those interviewed after their loved one's assisted death found the death peaceful and reported that it offered advantages compared with natural death in their loved one's individual circumstances. CONCLUSION: This study provides insight into experiences of support people coping with a loved one who is seeking or has sought MAID in the context of a country unfamiliar with the legal process of a planned and hastened death. Participants were supportive of their loved one's wishes for assistance in death to end suffering and found the process to be peaceful overall.

Providing medical assistance in dying: Practice perspectives.

OBJECTIVE: To explore the experiences of the first cohort of physicians to offer medical assistance in dying (MAID) in British Columbia. DESIGN: Qualitative study using semistructured, one-on-one interviews. SETTING: British Columbia. PARTICIPANTS: Eight physicians who offered MAID in British Columbia in 2016. METHODS: The physicians were interviewed by telephone or by e-mail between 4 and 6 months after MAID was made legal in Canada, with follow-up in January 2017. Interviews were audiorecorded, transcribed, and analyzed through qualitative thematic analysis. MAIN FINDINGS: Participants believed that MAID was rewarding and satisfying work. They explained that some of the structural and emotional challenges related to providing MAID included the following: the refusal of faith-based institutions to provide information about MAID to patients, as well as their refusal to allow assessments or deaths to occur on site; having to deny MAID to patients who did not qualify for it; disagreements with colleagues who did not support the provision of MAID; dealing with the grief of family and friends who were present at the death; and feeling like they were always on call. While a few participants thought that the legislative restrictions of Bill C-14 were appropriate in the beginning when MAID was first available in Canada, most would like to see changes to the legislation to make it more aligned with the intent of the Carter decision, including broadening the eligibility criteria to include mature minors and people with advanced psychiatric diagnoses, having the ability to honour advance directives, and removing the requirement of death being in the reasonably foreseeable future for patients with grievous and irremediable conditions. CONCLUSION: Physicians in this study explained that providing MAID is rewarding work; however, there are many challenges that complicate their ability to offer MAID to patients. The current MAID legislation in Canada should be updated to better serve the needs of patients.

Exploring Alternatives for Marine Toxicity Testing: Initial Evaluation of Fish Embryo and Mysid Tests.

Current regulations require that toxicity assessments be performed using standardized toxicity testing methods, often using fish. Recent legislation in both the European Union and United States has mandated that toxicity testing alternatives implement the 3Rs of animal research (replacement, reduction, and refinement) whenever possible. There have been advances in the development of alternatives for freshwater assessments, but there is a lack of analogous developments for marine assessments. One potential alternative testing method is the fish embryo toxicity (FET) test, which uses fish embryos rather than older fish. In the present study, FET methods were applied to two marine model organisms, the sheepshead minnow and the inland silverside. Another potential alternative is the mysid shrimp survival and growth test, which uses an invertebrate model. The primary objective of the present study was to compare the sensitivity of these three potential alternative testing methods to two standardized fish-based tests using 3,4-dichloroaniline (DCA), a common reference toxicant. A secondary objective was to characterize the ontogeny of sheepshead minnows and inland silversides. This provided a temporal and visual guide that can be used to identify appropriately staged embryos for inclusion in FET tests and delineate key developmental events (e.g., somite development, eyespot formation, etc.). Comparison of the testing strategies for assessing DCA indicated that: (1) the standardized fish tests possessed comparable sensitivity to each other; (2) the mysid shrimp tests possessed comparable sensitivity to the standardized fish tests; (3) the sheepshead minnow and inland silverside FET tests were the least sensitive testing strategies employed; and (4) inclusion of sublethal endpoints (i.e., hatchability and pericardial edema) in the marine FETs increased their sensitivity. Environ Toxicol Chem 2024;43:1285-1299. © 2024 The Authors. Environmental Toxicology and Chemistry published by Wiley Periodicals LLC on behalf of SETAC.

Optimizing Trichiasis Case Finding to Attain the Elimination of Trachoma as a Public Health Problem.

BACKGROUND: As national trachoma programmes increase efforts to reduce the burden of trachomatous trichiasis (TT), TT case finding and referral are critical public health programme components. Our research aimed to explore the most effective and efficient approaches to finding, referring, and managing TT cases. METHODS: This was a prospective descriptive study, utilizing both routine programme data and primary data collection. This study compared four different approaches to finding TT cases across three different local government areas (LGAs) in Kano State, Nigeria. Each of the study LGAs was divided into four sub-units to accommodate the four different approaches. RESULTS: The number of outreach attendees was 4795 across the four case finding approaches, and this varied hugely, with the smallest number and proportion (403, 0.26%) in settings only employing house-to-house case finding and the largest number and proportion (1901, 0.99%) when town criers were used. That said, the proportion of TT cases among people presenting at outreach was highest (32.5%) when house-to-house case finding was used and lowest (10.3%) when town criers were used. More female TT patients were found (53-70%) and had surgery (79-85%) compared to male cases, across all approaches. The average project expenditure for finding one TT case was similar for approaches that included house-to-house case finding (USD 5.4-6.3), while it was 3.5 times higher (USD 21.5 per TT case found) when town criers were used. DISCUSSION: This study found that the house-to-house TT case finding approaches were the most efficient method with the highest yield of TT cases. Including other eye condition and/or vision testing yielded similar results but required more personnel and cost.

Progress towards the elimination of trachoma in Nigeria.

Trachoma is targeted for elimination as a public health problem worldwide by 2030. In Nigeria, elimination activities are implemented at the local government area (LGA) level. They started in 2002 by conducting baseline population-based prevalence surveys (PBPSs), which continued in a systematic manner with engagement from the Global Trachoma Mapping Project in 2013, and subsequently Tropical Data. The results led to the development of Nigeria's first trachoma action plan and its subsequent revision with additional information. Following 449 baseline PBPSs, 122 LGAs had an active trachoma prevalence above the elimination threshold, requiring interventions, while 231 LGAs required community-based interventions for trichiasis management. By 2021, >34 million antibiotic treatments had been provided in 104 LGAs, with 89 LGAs eliminating active trachoma. Nationally, water and sanitation coverages increased by 3% and 18%, respectively, in 7 y. Systematic trichiasis case finding and management were carried out in 231 LGAs, resulting in the management of 102 527 people. Fifty-four LGAs decreased trichiasis prevalence unknown to the health system to <0.2% in persons ≥15 y of age. Where this elimination prevalence threshold was reached, trichiasis services were transitioned to routine eye/healthcare systems. Such progress relied on strong leadership and coordination from the national trachoma program and tremendous support provided by partners. Attaining elimination of trachoma as a public health problem in Nigeria by 2030 is feasible if funding support is sustained.

A secondary analysis to determine countries and districts eligible for documented full geographic coverage for trichiasis case finding and outreaches.

BACKGROUND: The World Health Organization recommends house-to-house case searches as an option to evidence whether the elimination of trachomatous trichiasis (TT) has been reached. We sought to determine the number of trachoma-endemic countries and districts that will require either documented full geographic coverage (DFGC) or TT-only surveys. METHODS: We conducted a secondary analysis of data from the Trachoma Atlas to identify evaluation units (EUs) that require house-to-house case searches or TT-only surveys to demonstrate achievement of the elimination of TT. RESULTS: There were 1710 EUs with TT above the elimination prevalence target in all trachoma-endemic countries. Of those EUs, 852 (49.8%) do not have a future survey planned and will therefore potentially have to evidence through DFGC or TT-only surveys whether the elimination prevalence target for TT has been reached. CONCLUSION: Of the large number of EUs that require TT-related activities, nearly half of them will need to evidence that every household in the EU has been visited by a case finder and all confirmed cases managed. Given that this is a relatively new way to evidence elimination, and countries face different sociopolitical challenges, cross-country learning and improved guidance is key to support global elimination.

Work-based feedback conversations with GP teachers.

INTRODUCTION: Feedback may play out in the general practice workplace less usefully than anticipated by educators. We investigated work-based feedback conversations about directly observed student tasks embedded in the supervisor's clinical consultations with patients. METHODS: Feedback conversations between GP teachers and medical students and subsequent student reflections were audio-recorded. Student and GP teacher focus groups were also conducted and transcribed professionally. An iterative, qualitative descriptive analysis integrating all transcripts was undertaken. Findings are discussed under the descriptive categories of feedback structure, content and perceived value. RESULTS: Twenty feedback conversations (total duration of 85 min) between five GP teachers, nine students and 20 student reflections (total duration of 58 min) were analysed. GP teachers actively engaged students in reflection and used balancing scripts and soft correction strategies. Students appeared to have some difficulty steering feedback conversations, which focused more on general skills than case-specific content knowledge. The recorded conversations were fragments of ongoing, in-practice teaching and learning, explicit and implicit. Student reflections suggested that they were able to grasp learning points effectively and identify room for growth. Praise and positive self-feedback appeared to reassure students, particularly when they were disappointed by their performances. DISCUSSION: Formal 'set-piece' feedback conversations may be a useful opportunity to explicitly surface and/or reinforce previous 'in-practice' reflection and feedback using a systematic structure. They may also reassure and encourage students and foster positive educational alliances. Students value in-practice and on-practice feedback but may prefer more control of the latter conversations.

Explaining the continuing high prevalence of trachomatous trichiasis unknown to the health system in evaluation units: a mixed methods explanatory study in four trachoma-endemic countries.

BACKGROUND: We explored reasons for continuing higher-than-anticipated prevalence of trachomatous trichiasis (TT) unknown to the health system in population-based prevalence surveys in evaluation units where full geographical coverage of TT case finding was reported. METHODS: A mixed-methods study in Ethiopia, Kenya, Nigeria and Tanzania was conducted. We compared data from clinical examination, campaign documentation and interviews with original trachoma impact survey (TIS) results. RESULTS: Of 169 TT cases identified by TIS teams, 130 (77%) were examined in this study. Of those, 90 (69%) were a match (both TIS and study teams agreed on TT classification) and 40 (31%) were a mismatch. Of the 40 mismatches, 22 (55%) were identified as unknown to the health system by the study team but as known to the health system by the TIS team; 12 (30%) were identified as not having TT by the study team but as having TT by the TIS team; and six (15%) were identified as unknown to the health system in the TIS team but as known to the health system by the study team based on documentation reviewed. CONCLUSIONS: Incorrectly reported geographical coverage of case-finding activities, and discrepancies in TT status between TIS results and more detailed assessments, are the key reasons identified for continuing high TT prevalence.

Impact of personal protective equipment on the clarity of vision among trachoma survey graders and trichiasis surgeons in the context of COVID-19.

BACKGROUND/AIMS: The COVID-19 pandemic necessitated the use of personal protective equipment for those involved in trachoma survey grading and trichiasis surgery. We sought to determine which configuration of a face shield would be less likely to impact grading accuracy and ability to conduct trichiasis surgery. The research also included assessment of comfort, ease of cleaning and robustness. METHODS: There were three research phases. In phase 1, assessment of four potential face shield configurations was undertaken with principal trachoma graders and trichiasis surgeon trainers to decide which two options should undergo further testing. In phase 2, clarity of vision and comfort (in a classroom environment) of the two configurations were assessed compared with no face shield (control), while grading trachomatous inflammation-follicular (TF). The second phase also included the assessment of impact of the configurations while performing trichiasis surgery using a training model. In phase 3, face shield ease of use was evaluated during routine surgical programmes. RESULTS: In phase 2, 124 trachoma graders and 28 trichiasis surgeons evaluated the 2 face shield configurations selected in phase 1. TF agreement was high (kappa=0.83 and 0.82) for both configurations compared with not wearing a face shield. Comfort was reported as good by 51% and 32% of graders using the two configurations. Trichiasis skill scores were similar for both configurations. CONCLUSION: The face shield configuration that includes a cut-out for mounting the 2.5× magnifying loupes does not appear to impact the ability or comfort of trachoma graders or trichiasis surgeons to carry out their work.