The much debated “right to die” has been in the news again recently, when the Supreme Court, the highest Court in the land, ruled that legal permission will no longer be required to end care for patients in a long-term permanent vegetative state (PVS).
A vegetative state is when a person is awake but is showing no signs of awareness. A continuing – or persistent – vegetative state is when the person is like this for more than four weeks. The more serious permanent vegetative state occurs when a person stays in that condition for more than 6 months following a non-traumatic brain injury, or 12 months following a traumatic injury.
There are an estimated 24,000 people in a PVS.
People in vegetative states may in many cases appear to be exhibiting “normal” behaviour, such as opening a closing their eyes, falling asleep and waking up and reacting to touch or other stimuli. They can often breathe without artificial assistance and can have an apparently normal heartbeat. This can make it very hard for families to accept that that person is not fully “alive” and will any minute “wake up” and revert to the person they were before the incident that caused their PVS, especially as recovery from PVS is not impossible, though extremely unlikely. Treating doctors will be telling them that people in a vegetative state doesn’t show any meaningful responses, nor do they exhibit signs of experiencing emotions. They understandably can’t believe it.
One of the most well-known cases that began the right to die debate was that of Tony Bland. Injured in the Hillsborough football stadium disaster in 1989, he was in a vegetative state for four years until a landmark case allowed doctors to withdraw his feeding tubes. Although this would in effect bring about his death, the House of Lords, as the Supreme Court was then, ruled that removing food and water did not constitute murder in the way that actively killing someone, say with a deliberately fatal drug overdose, would be, which had been the state of law prior to Mr Bland’s case. The Lords recognised that it was a controversial decision at the time by stating that the ruling “would divide opinion”, as indeed it still does today.
What the ruling means is that it will now be easier to allow someone in PVS with no hope of recovery, to die. Families suffer “agonising waits”, not knowing how long their sons, daughters, partners or parents will exist in that state. They rarely give up hope, but also know that their hope may well be misplaced. It must be a terrible time for them. The decision they have to take to apply to a Court for permission to let someone die can only add to their distress.
Now, when families and doctors are in agreement that it is no longer in the best interests of that person/patient to be kept alive, medical staff will be able to remove feeding tubes without first applying to the Court of Protection, which was the first stage in the Court process to allow this to be done. The Court of Protection has heard cases like this for 25 years, but the process can be both lengthy and costly for both the families and the health authorities treating such patients.
Lady Black ruled there was no human rights violation.
The case in this instance was brought to the Supreme Court after a banker in his 50s, “Mr Y”, suffered a heart attack, resulting in severe brain damage with no hope of recovery. His family and his doctors agreed it would not be in his best interests to carry on keeping him alive and agreed to remove feeding and water tubes to allow his death. The NHS Trust caring for him applied first of all to the High Court for a ruling that it should not be necessary to apply to the Court of Protection for permission to do this given the agreement of all parties. Mr Y did in fact die, but despite his death, the case continued so that the Court could make what was hoped to be a definitive decision as to when permission was needed.
Though the judge agreed, the Official Solicitor, who independently represents vulnerable people in respect of their rights and their interests, appealed on behalf of Mr Y that the step should not be taken, that appeal was dismissed.
Again, this ruling will arouse strong views. There are ethical, moral, religious and many other considerations to think about.
A spokesman for the BBC commented “There will be some who consider this a compassionate ruling…..some who say this is a dangerous ruling along a slippery slope to euthanasia”.
Dr Peter Saunders, from Care Not Killing, said he was “disappointed” with the ruling and was concerned that decisions may be made for the wrong reasons. In the Supreme Court judgement, Lady Black said an agreement between families and doctors was sufficient safeguarding to ensure “public confidence“, but she urged families to apply to Court “where there are differences of view” between relatives or medical professionals. One presumes that in all these cases, the families contributing to the decision will have been fully, and possibly independently, informed about the procedure before making their decision. A high degree of trust and good faith between the families and treating doctors is likely to be necessary for agreement to be reached. But the primary and indeed possibly only, goal must be the patient’s best interests. That must override all else.
A different view was given by the charity Compassion in Dying, who said it would
“allow those closest to a person – their loved ones and medical team – to feel supported and empowered to make the right decision for the person, even when it is a difficult one”.
But the reality is that the genie is out of the bottle and will not go back in. This is, to our mind, how it should be. The debate on the right to die and euthanasia will not go away. It is a cliché, but true, that justice must not only be done, but be seen to be done and the way to do that is to carry on discussions freely and openly.