One of my most popular blog articles of the past few years was a piece I penned called: Autonomy or automatons? (or 'autonomy anomaly'?) in April 2013. In it, I discussed the problem with the possibility that everything contained in a person's advance care directive would be binding upon a treating doctor. I argued that this would remove the doctor's right to his or her own autonomy and recourse to best medical practice and their judgement borne of experience and their training.
Recently a US Oncologist, writing in The Journal of Clinical Oncology discusses the issue of autonomy using what must be seen as something of an extreme example. David P. Steensma talks about a patient, who apparently had no faith in conventional medicine and, even in the face of a raging cancer, refused his ministrations towards dealing with the disease through conventional medicine.
Steensma wrestles with his own emotions and thoughts at his craft and overtures being rejected. He summarizes, correctly, that his patient had every right to exercise her autonomy and to refuse treatment.
He observes: We need to explain treatment options in the patient's own terms and then accept their care decisions, even if the decision is something we ourselves would never consider. Of course, we must also assure ourselves that the patient is in fact capable of making a decision—my patient underwent brain imaging and a careful examination of her mental state—and sometimes that assessment can be a very difficult one to make. But incompetence and irrationality are only neighbors, not bedfellows. What seems like irrationality to me may be someone else's deeply held, culturally influenced belief. As hard as it is to stomach for those of us who feel strongly the calling to be a patient advocate, it must be acceptable in a free society for competent adults with curable cancers to die because they choose to refuse treatment.
Last week The Saturday online ran an article about a man with multiple medical difficulties who had decided to cease dialysis and to succumb, thereby, to his condition rather than face a difficult and protracted remedy for a severe spinal condition. The article, penned by his wife, is a worthy read. (you can find the article HERE). It is not, however, an argument for euthanasia; rather, it is a difficult but sound reflection upon proper treatment of a human person.
The article concludes: And so it was with Bill's death - a deliberate but never a suicidal choice, made by the soundest of minds - about which there should be no conspiracy of silence. I'm telling Bill's story now because, as a society, we need to ensure our end-of-life practices do not violate the essential principles - that we claim to hold so dear - of autonomy and self-determination.
Bill, as the story relates, underwent a psychological evaluation when his medical specialist learnt of Bill's decision. There was also a confirming assessment.
Steensma also relates that his patient willingly underwent a similar evaluation. This is important. If it is found that the person is not of sound mind to the degree that would allow them to make an informed and conscious decision to refuse treatment, the medical profession has a duty to consider actions to protect a patient from his or her own irrational actions. This could mean detention under mental health legislation or it could simply mean providing good care until the patient's capacity for judgment is restored. In any case, this remains a fitting protocol.
Yet mental capacity is not widely talked about in the media stories of suicide. Certainly, the media will always mention a helpline for those who might be disturbed by the story and, yes, a disturbed state of mind is often implied in terms of suicide generally. But when we're dealing with the cause celebres where people have suicided with the secondary intention of making some point about the need for legal euthanasia, we seem to accept that theirs were rational decisions. This seems so regardless of whether there was an underlying illness or not.
Truth is we will never know the person's mental state or the concerns or life experiences that have brought them to the decision that ending life is the only solution. Even the occasional pre-recorded TV interview is not enough of a basis to draw a conclusion. All we really can question is the treatment of a suicide of such a person as being somehow different and somehow less of a concern than, for example, the suicide of a young person.
It is in this context that a medical professional has a duty of care to determine competency. This is also the case, by the way, when the patient has an advance care plan. Such plans are enacted upon with the person losing competency, so this determination of when competency is no longer evident, is critical.
But what of the doctor's role here. Steensma struggles with a patient's refusal of treatment when he knows that what he is offering provides the possibility of the best outcome. Yet he knows very well that such a decision needs to be respected. His professional attitude demands that he respects that; just as his professionalism also demands that he do his utmost to convince the patient otherwise. Would 'doing his utmost' be pressuring also? These are difficult questions.
I think it fair here to observe that Steensma's ego may be somewhat bruised through this exchange. After all, this kind of decision against best advice would not be common. The question of how far and how hard to push is vexing. He would not be used to that. Steensma then offers an anecdote about a fellow medico who boasts that he can convince a patient of any course of action:
As a medical student, I once spent several weeks working with a charismatic young surgical resident who brashly told me he could convince any patient to do anything he thought appropriate. (Sometimes I wish I still had him to call on in cases where I feel like I am arguing in circles.) The surgeon bragged to me on our first morning together, "You just watch me in action, Steensma. I can talk any patient into any code status I want, and I can convince anyone to have or not have any procedure or test. The magic is not in what you say—most patients don't really know what they want anyway—but in how you phrase it." Over the 3 weeks we worked together, he certainly lived up to his promise. But his combination of pseudo-authoritative sophistry, Rasputin-style hypnosis, and wearisome cajoling were techniques that made his patients' autonomy a farce. Intellectually, he may have believed in the principle of autonomy, but in practice he simply could not give up any of the control of making medical decisions.
The medico as a high-pressure salesman. This is frightening stuff. Even if this sales doctor's pitch were for the very best of outcomes, as Steensma observes, it still rides rough-shod over autonomy.
At these moments, ones that are often dramatised on television as the 'give it to me straight, Doc' encounters, we can easily understand that there is a significant power imbalance in the doctor/patient relationship. The story above, in this context, is therefore an abuse. Thankfully, in my experience, few doctors behave this way.
But Steensma's colleague is dangerous. At the very least he is taking short cuts. At the worst, he could be acting upon interests that may not be aimed at the best care for the patient; possibly even sinister outcomes. We do not know. But while ever there are vulnerable and confused patients and while ever there are doctors who act thus, there will always be a risk to patient's rights and welfare.
But legal euthanasia and assisted suicide will be just fine and patient's rights will be respected. Yeah, right!