ACEs AND MAID

What are ACEs, you ask? I’m so glad you did. Keep reading! (There’s a really helpful video coming up …)

Last time around, I wrote about the need for research into many different areas, mostly with regard to how the legalization of doctor-assisted death has changed and continues to change Canadian culture. We need to understand how disabled Canadians (already targets of discrimination in many aspects of life, already recognized as such in Canada’s Charter of Rights and Freedoms) may or may not be further devalued as a result. Cultural Change is such a tough thing to measure. I really hope lots of researchers take on the challenge. (Looking for a thesis topic, anyone?)

Meanwhile, here’s a completely different proposal for someone out there to consider: The most recent MAID Annual Report cited “Other” as the main complaint in 40% of Track 2 MAID cases. That’s 87 non-dying grievously and irremediably suffering people who died because of “other”. Do we not need to know more than “other”? And by the way, a further 21% died from unspecified “Multiple Comorbidities”. That’s 61% of Track 2 humans – 134 former humans – who died by doctor for unspecified reasons. Excuses were made for this failure in the Annual Report, and a promise was made: “More information regarding this population group will be collected in 2023, under the amended regulations, which will permit reporting in greater detail on persons receiving MAID who are non-RFND and their associated circumstances.” (Non-RFND = Natural Death is NOT Reasonably Foreseeable. aka “Track 2”). [By the way, I checked out the “amended regulations” which don’t appear to promise much at all, but will come into effect in January. And here’s a link to the Regulations that are in effect now (until January 1, 2023). ]

To recap, doctors are required to report on the diagnosed medical condition that is the “cause” of the patient’s intolerable suffering. But at present, that information is hidden in public reporting, such that we are left guessing why 61% of Track 2 losses of life happened. This data is available and should be reported.

Beyond that, however, data that might be highly relevant to understanding what drives MAID is not even on the radar because it’s not being collected.

This leads me to a proposal: What if every single person who applies for and/or receives MAID across the country fills out a little 10 question form and consequently has a “score” added to their file. This would not be onerous for doctors doing MAID assessments, but could provide real medical information that could identify correlations highly relevant to MAID researchers, whether they be community or academic, and to the public at large. be useful in forthcoming annual reports.

The score I have in mind is an ACEs score. To find out more about ACEs, check out this fascinating 15-minute video by Dr. Nadine Burke Harris:

So what is an ACES score? It’s a very interesting number, begun as a line of inquiry that was started in the mid ’90’s by doctors who were examining obesity as a physical health problem. They asked their patients 10 questions about adverse childhood experiences and tracked the results. There was no therapy involved, no expectation of mental health implications. They were simply wondering if stressful events in childhood contribute to health problems in adulthood. And they found out that they do. Big time. Obesity, heart disease, high blood pressure, depression and many other conditions.

Since the original study, the list of ACEs in various measures has expanded with the goal of capturing diverse population data, particularly from racialized people and those living in poverty. For instance, since 2011, ACEs questions on the National Survey of Children’s Health (NSCH) have incorporated familial death, neighborhood violence, economic hardship and discriminatory treatment based on race or ethnicity.  (Disability has a hard time getting included in studies of social disadvantage, but it deserves to be included.)  In 2019, the CDC found that at least five of the top 10 leading causes of death (in America), including respiratory and heart disease, cancer and suicide, are associated with ACEs.  The higher the ACEs score, the higher the risk of associated health problems.  

What the score measures is “toxic stress” and the way it alters brain development, reactive patterning and physical habits in the body and mind. There are treatments to counteract the effects of toxic stress, whether it can be treated in childhood or the person has to wait until adulthood to seek help. Positive childhood experiences (such as an adult who believes the child and/or provides reliable support) can help to counteract the toxicity of the stressful environment. (Measurement of those factors create the acronym PACES.) With or without treatments, knowledge of this background information about a patient can and should lead to “trauma-informed care”.

I believe it would be useful to know how many people choosing MAID have ACEs scores and how high or low those scores are. Do people seeking MAID in Canada have high or low scores? (In other words, did they experience high-stress or low stress childhoods?) ACES scores should, in my opinion, be tracked regardless of outcome, in other words, whether or not the applicant actually goes ahead with their application and dies by MAID. What are the implications if the scores are high? What are the implications if they are low? It’s a simple, numerical measure of a very important medical phenomenon. We should know the answers.

I am not suggesting that MAID should be denied to anyone based on their ACEs score — at least for now. Doctors (ideally) will use good clinical judgement, consult with specialists as required by law, and follow all guidelines and recommendations of their provincial medical associations. But it seems to me that MAID data collection could and should include these objective numerics without compromising anyone’s safety, security, privacy or access. And whether or not the doctor considers the patient “vulnerable”.

The collection of this data is not a study in and of itself. It yields information, that’s all. Then it’s up to researchers from community and academic spheres to examine the data and find patterns that responsible legislators and policy-makers would surely want to take into account. Federal as well as provincial and territorial health authorities need a full understanding of the factors associated with intolerable suffering. And it should raise an important question: What would a trauma-informed MAID system look like? Does it just apply to patients considered “vulnerable”? [Hint: It shouldn’t!] Is it just being nicer to traumatized patients on their deathbeds? [Hell no!] Or …? How might it be different? Everyone is just groping in the dark without the basic data.

Federal authorities should be building a robust knowledge base for ALL of us to understand what is going on with MAID in our country. Who wants it? Who benefits from it? Who is delivering the “service”? Collecting ACEs data is ONE way to expand that knowledge base in an objective and dispassionate way. Federal regulations should require the collection of that data as part of MAID monitoring. See future blog posts for other ideas about what else they should be tracking.

LIVING WITH DIGNITY CANADA will register as a Stakeholder with Health Canada’s Consultation and Stakeholder Information Management System in case they ever want to get more honestly familiar with our points of view on these issues.