Staff stories: Accepting death and illness as a doctor and as a patient

Katie Groom is studying medicine at a London university, and is currently in her second clinical year at a London hospital.

This is one in a series of stories that the Point of Care programme is presenting on the issues that staff face in trying to ensure a positive patient experience. The views given in this article are those of the author and do not necessarily represent the views of The King's Fund.

As I'm settling into my second clinical year as a medical student one recurring theme has stuck with me; when a patient chooses an option that goes against our logic. It is something that is beyond my control, so I have found it difficult to fully accept.

As trainee doctors, we sit in outpatient clinics furiously scribbling down everything that is being said while the doctor informs the patient of the best treatment available. In most cases, patients agree with them. However, this is not always the case.

Over the past year I have seen many patients refusing their advised treatment or wanting to end their life. I vividly remember one patient, who had severely disabled hands and feet from untreated rheumatoid arthritis, a fairly rare sight these days as treatment is now so successful. A devout Irish nun in her late 70s, she was in hospital for an unrelated case of pneumonia, but she was perfectly happy to speak at length about her condition, and was at ease with her disability.

I took the patient's history, asking her about her rheumatism, and it soon became apparent that she had repeatedly refused treatment. It was the first objection to medical treatment I had witnessed in my clinical career. I was completely confused: why would someone refuse a treatment that could improve their functional ability? The patient's response has stuck with me ever since.

She said that if she took the treatment – continuous use of steroids – her immune system would have become so compromised she would have died much earlier of something else. She wouldn't have been able to fight off any infections and would have been predisposed to other life-threatening diseases. Sadly a lot of her friends had passed away, and she was convinced that not taking this course of steroids had increased her chance of survival.

I asked her doctor whether he would have done anything differently if he had been her doctor when she first presented with rheumatoid arthritis. He shrugged, saying 'there is nothing you can do; you can only offer what is best for the patient'. Contemplating this later, it occurred to me that perhaps, in this particular patient's case, her best option was to do nothing – to live with the debilitating effects as she felt they outweighed the effects of the treatment. Do we as doctors have the right to dictate how someone lives their life? As the doctor said, we can only offer treatment; we can't force patients to comply. It may seem frustrating, but with examples like this one, I realised that there is no room for judgement in clinical practice. Instead we should try to understand a patient's decision.

It is important to be clear about how many patients truly understand their condition, the treatment options and the effect it will have on them. This understanding won't necessarily happen after just one consultation, after diagnosis or even sometimes for years into the condition. But I felt assured that this particular patient completely understood her decision and, it seemed, had never regretted it. Perhaps her religious life had had an effect on her acceptance of the condition: religion and the acceptance of illness and disease is a frequently debated topic in clinical medicine. Some may argue that she had been subjecting herself to a life of pain as a sign of the ultimate sacrifice to her God. Others may assume that her acceptance has allowed her to not only live with this disease, but to be at peace with it.

I have struggled with the acceptance of illness over the course of this year. The definition of acceptance is ‘a person's agreement to experience a situation, to follow a process or condition (often  negative or uncomfortable) without attempting to protest, exit or change it’. Accepting the inevitable – be it the unexpected loss of a child, living with a degenerative disability, or giving up on all other treatment – can often help people to come to terms with their illness or grief. As a medical student, I find these decisions impossible– I think of the nun with rheumatoid arthritis and can understand the doctor’s anger and frustration. Doctors have dedicated their lives to finding a cure for this condition, but while the treatment prevents deformities, it ultimately leaves the patient dependent, and the nun felt this was too great a sacrifice. Surely that is her right as the patient?

If I'm being honest, my training hasn't yet taught me how to fully understand this patient’s decision. It may not come to me for a while, perhaps until I have my own career and have to make my own decisions about patients' care, or perhaps until I have to make a similar decision about my own health or the health of a loved one. I'm not sure we can just be taught this at medical school, but hopefully our experiences will help us understand them in time.