This is an anonymised story about how a doctor’s misunderstanding of the law around managing the death of a patient with capacity appears to have caused unnecessary suffering. It is a salutary tale about the need for doctors to understand the subtleties of the law on consent to treatment and, in difficult cases, the need to seek legal advice. But it is also about the importance of doctors respecting a capacitous patient’s right to refuse treatment, even if this leads to the patient’s death.

Paul (not his real name) suffered from a progressive degenerative disorder which was in its advanced stages. He lived at home with a package of care which was funded by the NHS. His sister had suffered from the same disorder as well. She was younger than Paul and tragically had died. Her death came in hospital after she had contracted pneumonia. Paul was well aware that he was dying and had full capacity to make his own decisions about receiving or not receiving medical treatment under the Mental Capacity Act 2005. He was very clear that he did not wish to die in hospital.

He received treatment through a Non-Invasive Positive Pressure Ventilation system (“NIPPV”). He knew that if he disconnected the NIPPV this would bring about his death in a relatively short period, but he also rightly anticipated that he would need some pain relief in these final moments. He could not physically disconnect the NIPPV machine, but could give a capacitous instruction to his GP to disconnect machine. As long as he continued to live he was, despite good medical care, in substantial pain and distress.

Over a number of months Paul sought to plan his own peaceful death. He wanted to die at home, surrounded by his family at the time of his choosing. His GP was originally supportive, but then changed his mind and refused to assist with Paul’s chosen withdrawal of treatment. That decision was challenged by nurses, but was endorsed by other colleagues, including a senior figure in the local PCT/CCG who advised the GP he should have nothing to do with this plan because assisting Paul to die in a peaceful way and at the time of his choosing would open the GP to being prosecuted for assisting suicide. It appears to have been suggested that it would be “unethical” for the GP to have anything to do with this plan. All this was decided at a case conference. It appears that no legal advice had been obtained by the doctors before taking this decision. The GP was referred to the relevant GMC Guidance on withdrawing and withholding treatment at the end of life. That guidance provides as follows concerning the patient with capacity:

“The patient decides whether to accept any of the options [for medical treatment] and, if so, which. They also have the right to accept or refuse an option for a reason that may seem irrational to the doctor or for no reason at all.”

However the GP was resolute in saying he would not be party to any planned withdrawal of treatment, and he was supported in this decision by a senior colleague who chaired the meeting.

In the event Paul endured an unnecessary transfer to a hospice and, after the hospice obtained its own legal advice, Paul died a peaceful death at a time of his choosing surrounded by his family after hospice staff had followed his instructions to disconnect the NIPPV machine. But Paul did not want to die in a hospice, he wanted to die at home.

So what was wrong with the analysis by the GP and the other doctors who looked at this issue? There was never any doubt in this case that Paul had capacity but the doctors failed to give respect to the consequences of him having capacity. It is a fundamental principle of medical law that consent must be given before any medical treatment can lawfully be given or can continue to be given. Everyone with capacity has the absolute right to withdraw from medical treatment for good reason, bad reason, or no reason. The fact that withdrawing from medical treatment is likely to bring about a person’s death is not a good reason to refuse to give effect to a person’s capacitous instructions. If consent is required for lawful medical treatment, it must follow that no one with capacity is required to endure medical treatment if they refuse their consent.

The GP was worried about “assisting suicide” but, properly examined, his fears were groundless. He was also worried about adverse publicity of the details of his work in assisting Paul to die at a time of his choosing became public. But Paul was entitled to make the decision to withdraw from the NIPPV treatment. If he, as a patient with capacity, gave an instruction for the machine to be disconnected, the doctor would be guilty of an assault if he refused to comply with the instruction. Once the machine was disconnected his death was caused by the muscular dystrophy, not by the doctor. Accordingly, as a matter of law, Paul was not committing suicide. He died from “natural causes,” namely the effects of muscular dystrophy.

There is an important distinction between omission and commission in this analysis. Omitting to receive life saving medical treatment does not add up to suicide. The death is still caused by the underlying medical condition. The fact that the patient has foregone the opportunity of postponing death by accepting life saving medical treatment does not mean that the decision to refuse treatment means the death can be labelled as suicide.

A patient who is suffering a terminal illness who takes an active step to end their own life in advance of death being caused by the illness is committing suicide. A patient who declines medical treatment for a terminal illness knowing that the illness will lead to death dies of natural causes.

There is one aspect of this case which is particularly difficult. Properly analysed, the GP perceived a conflict between Paul’s interests (his desire to withdraw from treatment at a time of his choosing and in his preferred location) and the GP’s interests (not being prosecuted for assisting suicide). This conflict of interests does not appear to have been identified and the GP was concerned to protect his own position even if this meant refusing to comply with instructions from a patient with capacity to withdraw from some medical treatment. Where such a conflict emerges it is important to recognise the conflict and ensure that any decision making is informed by independent advice. In this case the GP rightly sought advice from a senior colleague. Unfortunately it appears that there was a misunderstanding of the law on consent and further a misunderstanding as to what amounts to “suicide.” As a result the GP appears to have been supported in his decision to protect his own interests even though its effect was that he refused to comply with a perfectly lawful plan for the death of someone suffering from a terminal illness.

Perhaps the only positive aspect of this case is that finally, when Paul was in the hospice (not where he wanted to be) but surrounded by medical staff who were experienced in managing the dying process, he was able peacefully to withdraw from medical treatment and be surrounded by his family. However there are serious lessons to be learned by medical professionals from this case who have less experience of managing the dying process.

Consent received from patient’s next of kin.

David Lock is a barrister and QC, No5 chambers. He is a board member of Brook Sexual Health, a member of the BMA Ethics Committee, and a Honorary Professor at University of Birmingham.

Competing interests: I am a member of the Labour Party and Chair the West Midlands Branch of the Labour Finance and Industry Group. I am due to become a non-executive Board Member of Heart of England NHS Foundation Trust which is due to commence on 1 June 2013. My wife is a doctor who is employed by Worcestershire Partnership NHS Trust.