The recent decision by Sir Nicholas Wall, president of the Family Division of the English Court of Protection, to allow doctors to force surgery on a woman with learning difficulties who refused potentially life saving cancer treatment, has reopened the debate in the U.K. on patient autonomy: what happens to you when your doctor disagrees with you?
The 55-year-old women, known as “PS,” had been diagnosed with uterine cancer which was seen on hysteroscopy to obliterate the uterine cavity and extend into the cervix. Without a hysterectomy and removal of her fallopian tubes and ovaries, PS’s cancer was likely to spread, inevitably leading to her death. She initially agreed to surgery, but later recanted this decision, claiming a phobia of hospitals and needles. She also stopped going to the hospital for treatment.
Surgeons applied, under the Mental Capacity Act of 2005, to the Court of Protection to allow them to force PS to undergo the surgery, even if this required deception, chemical restraint, and subsequent physical restraint post-operatively to ensure adequate recovery. Their reasoning was that the patient’s phobia, and her refusal to turn up for medical appointments when she had previously done so, demonstrated that she did not appreciate the gravity of the situation and lacked the capacity to make an informed refusal. The court agreed with the surgeons that it was in PS’s best interests to have the surgery.
Reaction to the ruling has been mixed. Some people welcomed the court’s public ruling, claiming the transparency of the verdict is for the benefit of future cases. Opposition to the ruling has focused on worries that it sets a precedent in overriding the decisions of the disabled on the claim of incapacity.
This is not the first time such a precedent-setting case has come before the English Court. In 1994 a patient known as “C” with chronic paranoid schizophrenia, who was detained in a high-security psychiatric hospital, developed an infection in his leg. Surgeons determined that amputation was needed to save the patient’s life. C refused to consent to surgery, and was found by the judge to be competent to make that decision because he fully comprehended its consequences.
C suffered from delusions, including the belief that he himself was an accomplished doctor; however, at no time was he deemed by the court not to understand or retain medical information concerning his leg infection or to fail to comprehend the gravity of his decision to refuse surgery. What was more important to the court was that his right to self-determination was upheld, even though his decision appeared to go against his best interests.
In cases such as C’s and that of PS’s, it is understandable that clinicians sought to determine that their patient lacked capacity when the outcome was potentially as serious as death. Doctors do not want patients to die when potential life-saving treatments exist. Decisions to refuse treatment, however irrational to the clinician, may simply arise from a differing set of values given the experiences, beliefs, or desires of the patient. A treatment refusal should only be overridden if the patient has made that decision under the banner of”incapacity.”
Patients must always be assumed to have capacity unless proven otherwise. The judgment on C declared, “A person retains capacity if able to understand, remember, believe, weigh in the balance necessary information and express a decision.” Incapacity arises from “impairment of, or a disturbance in the functioning of, the mind or brain . . . permanent or temporary” and is the inability to make a reasoned decision. However, a person’s seemingly irrational or unwise choices do not mean that the person lacks capacity.
Returning to the current case of PS: it can be seen that surgery would be in the patient’s best interest, but does this justify the use of force and sedation? Without surgery, the course of PS’s cancer would no doubt require further hospital admissions, likely involving the use of needles in administering analgesia for palliative care. Would the pain and suffering she would no doubt experience outweigh the distress caused by forcing the surgery upon her? Given her previous willingness to undergo medical treatment, PS has shown a commitment to the value of her life; in committing PS to undergo surgery, we are preserving her life and reducing potential suffering further down the line.
Does this case and ruling condone the use of the Mental Capacity Act to force medical treatments on all patients with learning disabilities against their consent? I think not. Patients, such as those with terminal cancer, often refuse treatment, but they do so with full understanding of the consequences of their decision and they are deemed to have the capacity to do so. It is only when patients suffer from an intellectual impairment that limits their ability to make such decisions that the courts would side with the doctor’s view against that of the patient. As seen in the C case, a mental health disorder need not presuppose incapacity, but in PS’s case it did.
Patient autonomy is paramount to the practice of modern medicine, but I believe, as a medical student in Scotland, that occasionally doctors must act against it when patients are unable to see what is in their best interests. In the decision to make his ruling public, Sir Nicholas Wall has not just sided with doctors, but has put the patient first, ensuring that his reasoning for doing so will be clear to similar cases in the future, and we must welcome his decision to do so.
Kieran Docherty is a Hastings Center intern and a fifth year medical student at the University of Glasgow.