Autonomy and the changing self: commentary on ‘Patient Undone’

Installation by Janaina Mello Landini (click to see website)

 

I was immediately drawn to Deborah Bowman’s Radio 4 programme on how her approach to medical ethics changed during her own experience with breast cancer. It was her ‘undoing, personally and professionally’. By this she means that the certainties that had guided her as a professor of medical ethics, as a teacher, were upended in the prism of her own shock, pain and reaction to the news that she had a large breast cancer.

Never having questioned the appropriateness of sending patients’ clinic letters with raw, honest information, she began to see that their arrival can cause a form of harm, lying like ‘grenades’ on the doormat. Having been confident that autonomy, a stout and longstanding pillar of Western medical ethics, should indeed drive clinical decision making, she saw changes in her own self, and therefore began to question if decisions made by the ‘self’ is quite are quite as inviolable as we have always thought.

She then described the unsung but true agents of autonomy, who through constancy, approachability and accessibility support the patient towards decisions that must in the end be made. In Deborah’s case, whether to have the ‘medically unnecessary’ double mastectomy. Arriving at this point, balancing the pros and the cons, anticipating the possibility of delayed regret, required information, contextualisation and patience. Those who provide this (specialist nurses, mainly) may not feature highly in the standard seminar on patient autonomy, but their preparedness to repeat information and answer questions that might seem too small to bother the busy clinician with (what to wear, how to deal with hair loss), ensures that the patient is equipped to make the best decisions.

There were lessons in this programme for doctors who deliver bad news. Preparation, delivery that is tailored to the patient’s educational or professional background, use of drawings, and space, to digest, reflect, return. A decision on treatment made during an encounter when bad news is given is unlikely to be a fully informed decision, for the patient will be reeling.  Yet in my practise it is not unusual to break bad news and immediately make firm arrangements for procedures that entails risk. Thus, the programme made me re-evaluate what I do, and motivated me to restructure clinics where new cancer patients attend.

Another stand out segment concerned ‘virtue ethics’, where good practise is demonstrated through acts of consideration or kindness. In Deborah’s case, the anaesthetist who offered the use of a paediatric mask to help anaesthetic induction, as she was so afraid of needles. In contrast, falling unconscious to the sound of questionable 80’s pop music did not help, and was an example of environment suited to the medics and not the patient. Autonomy has its limits, in scale, and in details.

The last major eye opener was her reflection on being a clinical trial patient. You might think entering a trial, even a cancer trial, is an optional extra, an unnecessary but perhaps an altruistic act. Trials are based on equipoise, i.e. no-one knows if treatment A is better than treatment B. Yet Deborah, who had sat on research ethics committees and was well placed to be highly objective, felt compelled to enter a trial.   She was ‘unsettled by a visceral urge to try everything.’ Predictable side effects ensued, like a low white cell count. Deborah tried to minimise the significance of this, and realised this experience was about ‘hope’ and ‘control’. The research subject is above all things a patient with an illness who fears the worst. But in a study, you lose some control. Everything is protocolised. You cannot choose not to have blood tests or follow up scans, they are mandatory (unless you exit the trial). Autonomy is diminished. Your doctor, who is there to support you, is also the researcher, with loyalty to the larger picture, the trial.

What is autonomy in medicine, really? When illness forces a person into processes, guidelines and protocols that have been hammered out over decades, often with the benefit of an evidence base, does the patient really have a choice?  A treatment or procedure is recommended, they can choose not to have it, to withhold ‘informed consent’, but in the end what choice is there? Take the advice, or not. Perhaps the best we can do is ensure, as clinicians, that our patients know as much as they need and want to know, are supported in their decision making, and feel a semblance of control while walking through the complex world of modern medicine. Deborah Bowman’s programme did much to encourage clinicians to reflect on this.

 

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