Ethics: Unexpected field work

I OFTEN write about autonomy. I believe that individuals should be able to choose what happens to them in their care and that ethical practice attends to the differences amongst people.

Nonetheless, autonomy isn’t unproblematic. The notion of people as separate, rational and self-determining beings seems to overlook the connectedness and relationships that shape not only our own choices, but also inform what it is to be part of a flourishing community.

Autonomy depends on trust and understanding for it to be meaningful – a credible choice cannot be made without an appreciation of one’s situation and the key variables at play. I have wondered too about the notion of prospective autonomy; the extent to which anyone can really know what it is he or she would want in unexperienced, hypothetical circumstances. Nonetheless, autonomy is, for me, central to clinical ethics.

I have been thinking a lot about autonomy recently as I have spent time with many clinicians and in hospitals doing some unexpected field work as a patient. It has been instructive and I have learned a great deal.

The experience of being ill changes us in ways that potentially both enhance and detract from our identity, sense of self and, perhaps, autonomy. I have been more reflective, enquiring and focused than ever before. A forensic wish to understand, to consider, to question and to analyse the information and possibilities presented to me has driven me. I am hypersensitive to the weight and meaning of words, gestures and facial expressions. I am also emotional: scared, overwhelmed, shocked and protective of those I love whom I long to shield from the impact of my diagnosis.

I have realised that to attend properly to autonomy is to attend to all the different ‘ways of being and knowing’ that co-exist in a clinical consultation. It is about much more than the provision of information and the facilitation of choice, although those are sound enactments of respecting autonomy. However, where autonomy is given real meaning, it is because a clinician accommodates and shifts between my forensic rationality, insatiable questions and emotional response. It is possible to make choices and difficult decisions with someone who recognises that what might be unexpressed – fear, shame, sadness, anger and doubt – is in the consultation room along with the apparently composed, professional woman talking calmly about surgical options and chemotherapy.

Time matters to facilitating autonomous choices. From the purely practical matter of how much can be shared in a single meeting to a more abstract but powerful influence on the extent to which information can be borne at a specific point. I am someone who believed I needed to know everything: all of it, at once. Leaving aside the impossibility of such an insatiable appetite for knowledge and an unrealistic wish for certainty, I have discovered that when illness strikes, the sharing of information in a paced, careful, caring and gentle way allows space for it to settle and to sift. Had I been allowed, I would have made significant and irrevocable choices on the day my diagnosis was confirmed. Uncertainty – my oldest foe – was to be vanquished by knowing as much as possible and simply ‘doing something’. Yet, my wise, experienced and caring clinical team instead slowed me down, sharing what I need to know at that point and answering my questions, but also cautioning against hurrying and gently letting me adapt to the new normal whilst walking alongside me without judgement.

I will never again underestimate the value of written information and supportive resources. However much the patient may consider herself intelligent and informed and irrespective of the exemplary communication skills of the clinician, there is simply nothing that compares to having materials that can be explored at home and at a time that works for the individual. Being in touch with others who have navigated this testing terrain before you is a uniquely therapeutic contribution when learning to make choices in circumstances no one would choose. I confess that initially I took the booklets and details of support organisations with reluctance. Yet, they have been invaluable.

Fundamentally, autonomy is relational. It is not solely intellectual. It is predicated on interaction and exchange. It does not and cannot exist without the kindness, patience, sensitivity, wisdom, honesty, commitment and expertise of professional staff. To be able to be vulnerable enough to express fears, to be confident enough to convey personal priorities, to be respected enough to have questions answered truthfully and to be informed enough to make meaningful choices depends on trust. That is trust in other human beings. It is the most precious form of connectedness and I am grateful for it every day as I begin treatment for breast cancer. Thank you to everyone at The Marsden who gives meaning to my autonomy.

Deborah Bowman, Professor of Bioethics, Clinical Ethics and Medical Law at St George’s, University of London