Medical Assistance in Dying and Non-terminal Chronic Conditions

A Very Disturbing Story

The other day, we heard from a Canadian doctor, who was recently diagnosed with Parkinson’s Disease, that at her very first neurology appointment she was offered MAID (Medical Assistance in Dying) based on her diagnosis.

From my perspective, also as a person with a PD diagnosis, this represents a horror, and perhaps the ultimate in ableism. Indeed, we have been warning for some time that doctor’s need to be very careful in the way they deliver their diagnosis. This is because of the super strong power of “nocebo” or negative expectation effects, and hence messages of hopelessness and “only decline is possible” become self-fulfilling prophecies of doom. Just when some in the medical establishment are also getting this, and are starting to also call for doctor’s to give more hopeful, positive messaging,

The Curse of Diagnosis Trauma

we get this extreme in nocebo curses or “pointing the bone” of invoking MAID. The curse message given by even mentioning MAID at the point of a chronic illness diagnosis, let alone actually offering it, is explicit: “it is not worth living with chronic illness, and you might as well be dead, and not be a burden on your loved ones”. This is why I use the word horror.

Even having MAID left on the table for an “escape plan” further down the line is fraught with peril. Most people who are living with chronic illness will get to very low points, where we just don’t want to be here anymore. Twice, I have been suicidal, and wanted to die, the last time before my hospitalization. But this too passed, and I came back stronger. It is usually the case that folks with chronic conditions have to hit the very rock bottom, to reach the catalyst we needed for starting to heal, turn things around, take responsibility for our own health, and make the necessary changes.

Indeed, there are many who have gone through stages where MAID would seem like a mercy, but who have subsequently turned their life around, and indeed have even become grateful for the chronic illness having happened to them, because of the changes for the better and the personal growth it forced upon us. By offering MAID too lightly, we would probably not have these role models and paragons of recovery, or their transformational stories, because they will have been encouraged to remove themselves before they ever got there. In this way, MAID would re-enforce its own messages of hopelessness, and it will become true that no-one ever gets better, in a vicious circle.

I guess we can all envisage cases where assisted dying, at the right time, is a true mercy, but non-terminal chronic illnesses is not where it should be at, at all. Indeed, when we put something like MAID in the hands of a system like the western medical establishment, it is bound to degenerate into evil doing, slippery slopes, and utilitarianism. That system is so bad at helping people with chronic conditions in the first place, and hubristically does not believe that cures, healing or recovery is even possible. More and more chronic illnesses, of lesser and lesser problematic types, will be targeted.

At the moment, I am asking for/seeking more stories/anecdotes of MAID or equivalent being offered to folks with non-terminal chronic conditions, especially at the point of diagnosis, to determine how widespread this practice has already become.