The survey was sent to more than 10,000 people and 133 responded, 125 of whom were neuro-oncology clinicians (Fig. 1).
Clinician Demographics and Characteristics
Most respondents were neuro-oncologists (57%), including medical oncologists who treat brain tumors. Other represented professionals included neurosurgeons, radiation oncologists, advanced practice providers, psychologists and neuropsychologists, medical trainees, nurses, palliative care physicians, other physicians, research coordinators, and social workers (Table 1). Christianity was the most common religious group (45%) but the no religion or no response group was 43%. Within the Christian group, Catholic faith was the most common (52%) followed by unspecified, Protestant, and Eastern Orthodox. Survey responses came in from around the world aincluding six continents (Fig. 2). Most responses came from the United States, followed by Canada, the Netherlands, and Italy.
Attitudes towards MAiD
A minority (39%) of respondents worked in a jurisdiction where MAiD is legal. Only 16% of respondents had participated in the MAiD process, either as an assessor or by prescribing medications. One quarter (26%) of respondents held moral objections to MAiD while 57% did not and the remaining 17% were unsure.
Using a logistic regression analysis, factors found to make a respondent’s moral objection to MAiD significantly more likely included (1) shorter time in practice, (2) working in a country other than the United States, Canada, or the Netherlands (3) Christian faith, as compared to no religion (Supplementary Table 3). The longer neuro-oncology clinicians have been in practice, the less likely they are to have moral objections to MAiD. Notably, factors that did not predict moral objection to MAiD included profession, gender, Catholicism, age of patients, clinical volume, and whether MAiD is allowed regionally.
Cognitive Factors Underlying Capacity
Survey respondents were asked to rank the three most important Diagnostic and Statistical Manual of Mental Disorders cognitive domains necessary for patient capacity for consenting to MAiD . Executive function was ranked most important by 41% of respondents, followed by complex attention (21%), language (14%), and learning and memory (14%).
Analysis of the free-text responses revealed more detail. Impaired cognition was identified by a majority of respondents as one of the most important factors that would signal a decline in patient capacity, e.g. “when their cognitive functions are significantly impaired”. Respondents understood impaired cognition as including patients’ lack of understanding of treatments, the consequences of treatments, and lack of insight or awareness of the situation or options for care. Impaired language and impaired cognition in general was also highlighted by many respondents as influencing capacity. Impaired language was viewed as the inability to understand information and inability to recall and communicate information about intervention choices. One respondent wrote that incapacity should be suspected when “they can't communicate their reasons for making one choice vs another.” Additionally, impaired short-term memory, confusion, and disorientation were identified as factors that may signal a decline in patient capacity. Taken together, these factors became very important when identified as severe or persistent, such as when there is “severe decline in memory or cognitive status.” Respondents remarked on how these limitations were complex, difficult to assess, and that capacity was individualized. Some reflected on patients who are able to contribute meaningfully to their care and who can articulate their understanding and wishes. Incapacity then became a sense of when conversations with the patient “no longer have depth” or the person cannot communicate their reasons for choice.
Incapacity was seen as more likely to occur in patients living with advanced disease or who were actively dying. Respondents became concerned about a patient’s potential incapacity when there was disease progression or poor scores on objective capacity tests. Comorbid conditions, such as depression, and medication use (e.g, steroids) were also flagged as potential negative influences on capacity. Some respondents identified family as a resource that could provide collateral information to help clinicians assess patient capacity.
Interpretations of Hypothetical Scenarios with Questionable Capacity
Four capacity scenarios were presented to survey respondents. Hypothetical female glioblastoma patients with deficits in language, memory, wakefulness, or personality were described. Respondents were asked whether they believe the patient has the capacity to decide whether to opt for MAiD. Between 18% and 58% of respondents, depending on the scenario, thought that the patient had the capacity for this choice (Fig. 3A). Many respondents used the accompanying textbox to elaborate on their responses, and specifically to highlight the complexity of the scenarios and the limitations of being asked to provide yes/no answers. Some wrote that there was “not enough information to judge.” Most respondents believed that in-depth-capacity assessments were necessary for these scenarios. An assessment of the extent of neurological deficit was thought to be required to ascertain how the aphasia, amnesia, somnolence, or personality changes might impact the ability to understand, appreciate, and make a decision that aligned with previously-expressed patient values. Some questioned whether the requests for MAiD were consistent over time and whether they were aligned with patients’ prior expressed wishes. Respondents believed that patients could retain decision-making capacity despite short-term memory loss, somnolence, and personality changes, if patients could demonstrate consistent and stable choices. Some commented that we must determine whether patients can “make rational decisions that reflect their values.” Input from family, where available, was thought to be helpful in assessing these factors for patient capacity.
Respondents gave explanations for why they did or did not believe each hypothetical patient had the capacity to decide whether to opt for MAiD. Representative quotes in favour of or against capacity for each scenario are shown in Table 2. Using an ordinal regression analysis, two factors were found to predict the belief that patients have decision-making capacity for MAiD. Advanced practice practitioners (versus neuro-oncologists) and Canadians (versus Americans) were more likely to believe that the four hypothetical patients had decision-making capacity (Supplementary Table 1).
Interpretations of Hypothetical Scenarios with Varying Clinical Factors
Five MAiD scenarios were presented to survey respondents. The scenarios varied the hypothetical male glioma patient’s age, tumor grade, time since diagnosis, and performance status. Respondents were asked whether they would support the patient’s decision to access MAiD, assuming it was legally available. Between 26% and 78% of respondents, depending on the scenario, supported the patient’s MAiD decision (Fig. 3B). Many respondents used the accompanying textbox to explain that the scenarios lacked sufficient information to make this judgement. They emphasized the importance of proper capacity assessment, neuropsychological testing, and ruling out depression. They wanted to make sure that each patient properly understands their treatment options and prognosis.
When clinicians did not support a patient’s MAiD decision, they wrote several explanations. Some felt that palliative care is a better option. Others cited moral objections. Some scenarios involved patients one week after diagnosis. In these situations, many felt that this was too soon after diagnosis to make a rational decision for MAiD. Others felt that it was too soon to establish rapport with the patient to know if their choice was consistent over time. In the oligodendroglioma case, many felt that death was not reasonably foreseeable and that too many treatment options were still available. Young age was sometimes brought up as a positive prognostic factor, and that in such patients, symptoms might improve with time, which cast doubt on clinicians’ belief that MAiD would be an acceptable option for these patients. When clinicians did support a patient’s MAiD decision, they generally emphasized patient autonomy. They noted that all scenarios outlined patients with incurable conditions. Some with stated moral objections to MAiD were willing to refer to a non-objecting provider.
Using an ordinal regression analysis, we found three factors that predict support for MAiD in the scenarios. Non-American, non-Canadian, and non-Dutch (versus American) and Canadian (versus American) clinicians were less likely to support a patient’s decision to access MAiD (Supplementary Table 2). Canadian (versus American) clinicians and advanced practice providers (versus neuro-oncologists) were more likely to support a patient’s decision to access MAiD. Pairwise comparison of scenarios 5 versus 6, 5 versus 8, and 8 versus 9 demonstrated the importance of performance status, time since diagnosis, and age, respectively. The P-values for these comparisons were 0.007, < 0.001, and 0.049. Clearly, time since diagnosis, performance status, and patient age are all important factors when choosing whether to support a patient’s request for MAiD. Tumor grade is presumably important, but limitations in the scenarios did not allow pairwise comparison over this variable.