Meet the man who gave you the right to say no to your doctor

Your call, not his. Hang_in_there

Across hospitals and doctor’s surgeries every day, patients have to make difficult choices. But for most of us the freedom to decide what happens to our bodies is taken for granted – doctors recommend and we choose. But this wasn’t always the case, instead there was a presumption that doctor knew best. And few of us will be aware of the extraordinary story that enshrined our right to choose: that of a man known only as Mr C.

Mr C had a diagnosis of schizophrenia and was a long-term patient in Broadmoor, the high-security psychiatric hospital in Berkshire. Although he continued to have some delusional beliefs, including that he was “a great doctor”, it was well controlled. In 1994, he developed serious (and life-threatening) gangrene in his foot and a surgeon recommended that his foot be amputated. But after listening carefully to the surgeon’s advice, Mr C politely explained that he didn’t want his foot to be amputated.

Until then, Mr C’s foot may well have been amputated against his wishes. But there was disagreement – between the surgeon, who believed his right to decide should be respected, and Mr C’s psychiatrist, who had known him for many years. The psychiatrist believed Mr C was unable to make a valid choice because of the persistence of his delusional beliefs, particularly those that related to health, life and death. She feared that to respect his wishes was to condemn a vulnerable man to die unnecessarily.

While she questioned whether someone with a diagnosis of schizophrenia and a long-term patient in a secure psychiatric hospital could make a valid choice, the surgeon pointed out that many people would be reluctant to agree to an amputation even if advised to do so by their doctor. In his view, Mr C was lucid about his reasons and the question wasn’t whether doctors agreed with Mr C’s choice but whether he had the capacity to make a choice at all. If he did, no-one, however well motivated, should override it.

Bedside manner

We’re used to seeing the result of ethical standoffs in the news – often when the stalemate means that these cases reach the High Court. These cases can be highly charged, especially when it concerns issues of mental capacity.

Mr C’s case – which pitched medical paternalism against respect for autonomy – also reached the High Court. But this watershed case, which Lucy Scott-Moncrieff, Mr C’s solicitor, called a fight against the “might of the medical establishment” had another unusual feature: the hearing was held at his bedside.

Nigel Eastman, a forensic psychiatrist who was called in to assess Mr C’s understanding of his situation, said 20 years ago doctors “simply didn’t think about capacity” and lots of assumptions were made about the extent to which the mentally ill could make choices about their care.

The presiding judge, Mr Justice Thorpe, listened carefully to the arguments about whether Mr C could make an informed choice and the case for his right to self-determination. And, having done so, he concluded that Mr C had demonstrated that he had sufficient understanding of his situation, was able to remember and believe the medical information he had received and could weigh up the options. In short, he had the right to refuse amputation, even if it meant he could die.

A landmark decision

Although the circumstances of Mr. C’s case were unusual and far removed from most clinical encounters, it set a precedent that had ramifications for everyone. The decision wasn’t just about people in the long-term care of mental health hospitals, but about how the medical establishment views everyone. Significantly, Mr Justice Thorpe explored what it means for a patient – any patient – to be said to have the capacity to decide what happens to his or her body.

It was “a profoundly transformative case”, Eastman said, which fundamentally altered how doctors should treat patients and set out for the first time the criteria by which a clinician could assess whether someone had the capacity to make a choice about their healthcare. And meaningful choice in healthcare became not only possible but necessary. A series of cases followed Mr C’s and the concept of capacity was interrogated and refined until it was given statutory force in the Mental Capacity Act 2005. Scott-Moncrieff said this was all down to Mr C’s “indomitable spirit”.

What became of Mr C after the case? He remained steadfast in his belief that his leg shouldn’t be amputated and, as he predicted, he didn’t die from gangrene. Not long after the case, he was discharged from Broadmoor into the care of a psychiatric hostel where he lived quietly, with both legs, until his death.

Even though his name remains just a letter, Mr C bequeathed a remarkable gift to us all.

The story of Mr C, including recollections from those involved in the case at the time, can be heard on Test Case on BBC Radio 4.