ETHICS: It's the small things

WHEN I first became interested in medical ethics, it was an issues-led field that was predominantly concerned with ‘big questions’. The relatively few books that existed had titles such as Matters of Life and Death.

There were no syllabi nor any agreed curriculum content, but the lectures I attended were commonly concerned with a triad of abortion, euthanasia and reproductive ethics. These are, of course, important. Yet, early on, I became interested in the intersection of ethics and the small things.

For example, those precious initial moments in an encounter that set the tone and allow for trust, dignity and humanity to flourish, how we adapt in pressured environments to queries or interruptions, how constructively we can disagree and the tone of our communication with others. I wrote a lot about the “ethics of the everyday”, largely absent from curricula and textbooks, but integral to healthcare. I have been thinking a lot about the small things and the big challenges that they can present for staff and patients.

A few weeks ago, I received a letter from ‘the NHS’. It advised that an appointment had been booked across the road from my office for breast screening. The letter explained why this appointment was valuable, talking about age, risk, early detection and improved prognosis.

As some readers will know, this letter was received by a woman who no longer has breasts and, so far, has received two and a half years of treatment for breast cancer.

I was, in a response that is increasingly familiar when I think about illness, both rational and emotional. I appreciated that it was an automated letter and no one’s fault or responsibility. I understood that for many, the letter would be welcome and the ease of a pre-booked appointment appreciated. In a complex and resource-constrained system, it isn’t efficient or perhaps even possible, to identify those who might be considered exceptions.

Yet, I was also upset. The letter was a stark plunge into dark places. Its unexpected arrival was an unavoidable reminder that I was relatively young when diagnosed, that I had late stage disease with a poorer prognosis, that I was physically different from most women, that I was frightened about the future, that I felt ashamed about perhaps having ‘missed something’ before I was diagnosed and that maybe I should have been more alert to avoid being in this position in the first place.

I knew enough not to do anything immediately but to sit and process my response; to attend both to the rational and to the emotional. After a few days, I began to wonder about the member of staff who would take my call when I rang to explain that I would not be attending the appointment. He or she would have no idea about my circumstances, or that I have deliberately avoided having any clinical care at my own hospital.

Rather, I’d encounter someone likely to be working in a pressured environment and juggling myriad demands. I wanted to explain why I wasn’t coming, but I knew I needed to do it in a way that was calm, factual and kind. I understood that the person I contacted was not responsible for, or even aware of, my personal response.

I rehearsed the conversation. I debated whether to go over to the Breast Centre and speak to them in person whilst at work, or whether it was better to make a telephone call from home. The task hung over me and I was apprehensive when I passed the unit as I walked through the hospital.

I knew though that this ‘small thing’ was no one’s fault and I had to acknowledge that truth in my response. Eventually, I rang the unit.

It was not the conversation for which I hoped. I was reminded by the staff member that screening slots are precious and, although it was a fortnight until the pre-booked appointment, asked why I had waited a few days to get in touch. I was asked twice if I was “sure” even as I explained that I have had a radical bilateral mastectomy.

No one knew whom I should contact to avoid being invited to future screening in the hope that I could save the NHS time and resource by preventing further letters and pre-booked appointments.

When I put down the phone, I reflected on “the small things”. The letter was probably an unavoidable small thing; a consequence of the complexities and challenges of running a national screening system.

However, the response of another person to my call was a small thing that could have been different. The conversation, imbued with officiousness, irritation and misunderstanding, reflected ethical choices. It could have made all the difference. There was nothing “small” about it.