Comprehensive guidance for doctors on care at the end of life, including difficult decisions on when to provide, withhold, or withdraw life prolonging treatment, will go out for consultation from the UK’s General Medical Council in March. The draft guidance was approved by the council at its February meeting, subject to minor amendments. The consultation will be launched in the week beginning 23 March and will end in July. The new advice takes account of the Mental Capacity Act 2005; government strategies on end of life care in England and Scotland; GMC guidance in 2007 on consent; recent research; and a Court of Appeal judgment on a legal challenge to the GMC’s 2002 guidance Withholding and Withdrawing Life-Prolonging Treatments (Burke).
When they told my father-in-law the hospital had done all it could, that was not, in the strictest sense, true. There was nothing the doctors could do about the large, inoperable tumor colonizing his insides. But they could have maintained his failing kidneys by putting him on dialysis. They could have continued pumping insulin to control his diabetes. He wore a pacemaker that kept his heart beating regardless of what else was happening to him, so with aggressive treatment they could — and many hospitals would — have sustained a kind of life for a while. But the hospital that treated him offers a protocol called the Liverpool Care Pathway for the Dying Patient, which was conceived in the 90s at a Liverpool cancer facility as a more humane alternative to the frantic end-of-life assault of desperate measures.
Clinical criteria for PVS will clearly need to be revised in the light of this information. However, this research does not answer deep ethical questions about what should be done. These patients have profound brain injuries and their lives are extremely restricted. How will we evaluate their desires? What should we do if they wish to die? We will still need to do the ethical work to evaluate the implications of what they want, particularly whether they wish to live or die. This is one step towards an answer to the question of how we should care for people with severe brain injuries, but it is not the solution. Not only do we need to know what they want, we also need to know how limited medical resources should be fairly distributed and what constitutes a rational desire to die.