From medical school to retirement, doctors are told and reminded to respect patient’s autonomy. This means that we must respect the decisions they make about their own health, even if that decision seems nonsensical to us. This theme comes up again and again throughout our careers. Our attitudes to patient’s autonomy is tested in exams and vivas, the lawyers remind us about it during the Trust inductions, it’s a common theme in our job interviews, it comes up at conferences, in the media and, most importantly in our daily interactions with patients.
The vast majority of the time, patient autonomy is not a conflict issue. This is because the doctor and the patient are working together, in harmony, to try and achieve a common goal. Patients come to us because they want to get better, we doctors suggest something that we think will make them better and patients usually agree to it and then they usually get better. Their autonomy is driving them in the same direction as our medical advice.
Sometimes, the patient will have a different agenda to the doctor and sometimes, their agendas and beliefs drive them to make decisions that fly in the face of our advice. Sometimes, we can understand where they are coming from and sometimes we can’t. Nevertheless, respecting patient autonomy is one of the core duties of being a doctor.
Anil, one of the new junior medical doctors and fellow MTAS refugee, was telling me about Helen, a 43 year old woman whom he had seen on the Medical Assessment Unit the day before.
Helen came to hospital because she was very unwell. History and clinical examination showed that she was bleeding internally, possibly from an ulcer, and had lost a lot of blood. (For you medics reading, her Hb was 4.9 g/dl). She was critically ill and urgently needed a blood transfusion to keep her alive until the bleeding can be stopped either by endoscopy or by surgery.
The thing is, Helen is a Jehovah’s witness and Jehovah’s witnesses do not accept blood transfusions. Moreover, Helen is a recent convert to the religion and, as such, is much more hard-line about sticking to her beliefs, even in extreme situations.
Those adverts about giving blood really do speak the truth, you know. Blood transfusions do literally save lives. Helen is highly likely to die without a blood transfusion, leaving behind a grieving family, but Helen flatly refused to have one.
This is exactly the scenario that is frequently used to illustrate autonomy in medical school, in junior doctor’s teaching sessions etc… etc… so it’s interesting to hear about this scenario actually unfolding in real life.
The thing about autonomy is that if a patient is lucid and has capacity to make their own decisions, then we have to respect the decisions that they make about their own lives. As doctors, it’s our job to make the patient fully aware of the likely outcome of their decision and to treat them the best we can whilst respecting their beliefs, no matter how bizarre they may seem to us. It is wrong to force our will onto our patients, it is wrong to lie to our patients about what might happen to them.
Anil told Helen that without the blood transfusion, she is likely to die, aged 43. Helen said she understood this but would rather die than have the transfusion. This is her decision.
When Anil finished his shift, Helen was still alive, but was teetering on a knife-edge. She was having intravenous fluids and the medical team were preparing to take her down for an endoscopy to hopefully stop the bleeding. I just hope that the prayers of Helen and her family are answered and she makes it through.