Hope and trust are a doctor’s best medicine

The sad case of Charlie Gard shows how modern technology creates moral and ethical dilemmas

Whether it’s resuscitation after a cardiac arrest in a railway station or chemotherapy for a patient with widespread cancer, knowing when to stop is the most difficult decision a doctor has to make. The terribly sad case of baby Charlie Gard highlights how modern technology brings new ethical and moral problems. But the High Court brings victory to no one.

My experience as a cancer specialist has taught me that managing expectations from the very beginning is an imperative component of care. When I began as a consultant nearly 40 years ago it was not like this. We doctors held all the information and chose how to use it. We told blatant untruths to jolly patients along. The “C” word was never used – on ward rounds we used codes such as NG (new growth) or mitotic activity (increased cell division). We were in charge of the information flow and made decisions without asking our patients. Today, we are brutally honest and involve patients in their treatment decisions at all stages of their illness. I am often amused by eager young nurses thrusting cancer information leaflets at little old ladies with a harmless and curable small skin cancer.

The internet is a great leveller of knowledge between doctors and patients. But there are more than a billion websites about cancer alone. And while some are excellent – informative, balanced and useful – many are just blatantly marketing rubbish, the modern equivalent of snake oil. All sorts of unproven remedies from experimental drugs to weird alternative therapies can be found. All provide hope, but we know nearly all of it is false.

So today’s doctor-patient honesty brings real problems. I have a patient now who I know is likely to die of widespread cancer in the next three months. I wanted her to see the palliative care team to deal with her symptoms and make her comfortable. But instead she went to a very expensive private clinic in Germany, having raised nearly £100,000 from her family and by crowdfunding. The German clinic provides a combination of alternative medicines and orthodox drugs at low doses to avoid side-effects.

Before she went she asked me what I thought. I was cautious, as I know removing hope is not a good idea. But the clinic’s website was ridiculously positive, with claims of improbable and miraculous cures, none of which are published in the medical literature. As I expected, she has returned with absolutely no objective benefit. She did, however, feel it had been worthwhile – for some an odyssey like this is an essential part of their cancer journey; we have to respect it.

Another memorable patient, a very wealthy industrialist, had pancreatic cancer spread to his liver. Chemotherapy failed and we were at the end of the road. His daughter and only child was getting married a month later and he was determined to be there. He was slipping into liver failure and a week before the wedding I gave him an unconventionally big slug of steroids. He saw his daughter getting married in the garden of his vast Cotswolds house – and died there the next morning. No textbooks or guidelines could help in this situation but I felt so glad that we did it.

I look at the next generation of doctors being trained very differently to me. Their five-year course is handed to them on a laptop on day one. It’s full of algorithms, evidence-based decision-making, case histories and mechanisms of disease. What the computer can’t do is teach human interaction. We try to simulate emotion with actors and role play in the course. But it’s not the real thing, and society and human behaviour will change again during the students’ professional lives. You’ve got to see the sights and smells of the emergency room, the GP surgery, the labour ward and the operating theatre to experience the emotion that has been a part of medicine through the ages.

Hope and trust are the two essential components of the emotion in the doctor-patient relationship. As medical decisions become ever more complex, both sides must cherish these qualities as a critical part of process. Once they are lost, the greatest court in the land cannot bring them back. Professor Karol Sikora is a cancer specialist and Dean of the University of Buckingham Medical School