After Cathy Rentzenbrink’s 16-year-old brother Matthew Mintern was knocked over by a car in 1990 and sustained a serious head injury, all she could do was hope and pray that he survived. She could tell from the demeanour of the paramedics that it was serious. When he arrived at Pontefract hospital, he had to be resuscitated and then transferred to Leeds General Infirmary to undergo life-saving surgery. “I was obsessed with the idea that I didn’t want him to die,” remembers Rentzenbrink. “Of course I realised later there are lots of fates worse than death, but I didn’t understand that at the time.”
Mintern never woke up. He remained in a vegetative state for eight years until his family went to court for permission to withdraw his feeding tube and allow him to die. His story, which Rentzenbrink tells in her memoir, The Last Act of Love, is far from uncommon.
It is estimated that there are up to 16,000 patients in the UK in a vegetative state – where they are awake but show no signs of awareness – and perhaps three times that number in a minimally conscious state, where patients have clear but minimal awareness, such as occasionally being able to move a finger. People in these conditions are severely brain damaged and as time goes on, even partial, let alone full recovery, is unlikely. The only thing keeping them alive are their feeding tubes.
But until now, the only way to allow them to die was to go to court for permission to withdraw all nutrition and hydration, after which they would die within two or three weeks. Such decisions have been possible since 1993, when a landmark court case ruled that Anthony Bland, a victim of the Hillsborough disaster, could be allowed to die. Since that ruling, clinically assisted nutrition and hydration (Canh) has been defined as a medical treatment. If it is not in the patient’s best interests to continue it, doctors can withdraw food and water. Since then, around 100 cases have gone to court.
Now, families no longer need to embark on a legal process to stop life-prolonging treatment, after the supreme court ruled in July that if doctors and relatives agreed that withdrawing life support is in the patient’s best interests, a court order was not needed.
And today, the British Medical Association and the Royal College of Physicians are jointly publishing guidance for health professionals, and information for loved ones, on the rules governing how and in what circumstances food and water can be withheld. The guidance is endorsed by the General Medical Council.
John Chisholm, chair of the BMA medical ethics committee, says: “The aim of medical treatment is not simply to prolong life at all costs.”
Numbering 105 pages, the guidelines are long and complicated. They cover different scenarios depending on the nature of the brain injury and the clinical condition of the patient and, unless the patient is within hours or days of death, a second opinion is needed. Where the family and doctors disagree, it goes to court. Those doctors who fail to follow the guidelines face potential regulatory and legal action.
Even so, stopping nutrition and hydration poses clinical, ethical and legal challenges for doctors, and is riddled with guilt and emotion for patients’ families and loved ones.
Helen Steeple, who went to court in 2010 for permission to withdraw food and water from her son who was in a vegetative state for four years following a car crash, is glad of the regulation change. She believes the guidelines will make the process easier for professionals and help families avoid having to go to court. “[With these guidelines] we have protocol. It makes it a lot less frightening for everybody.” Rentzenbrink agrees: “I think they give clarity and lift some of the burden of responsibility off the family and onto the right shoulders of the healthcare professionals involved. By having guidelines, it should feel less personal and there should be a process to follow so people don’t have to blindly grope their own way.”
Professor Lynne Turner-Stokes, who has managed patients in vegetative and minimally conscious states for the last 20 years and who was involved in producing the guidelines, acknowledges it’s a very difficult area. Just because these patients have no or minimal awareness does not mean they cannot feel pain and discomfort. They are also prone to pressure sores and spasticity – a condition in which certain muscles are continuously contracted, she explains. “It’s a very distressing situation for families when they feel they wouldn’t want to be kept alive in that condition.” She adds: “The last thing you want is for patients to be suffering, so the guidelines set out a very clear palliative care programme.”
But some doctors fear the new rules could make matters worse. Professor Derick Wade, a retired consultant in neurological rehabilitation and a visiting professor at Oxford Brookes University, has concerns: “I fear what’s going to happen is that the delay put in by the law is going to be replaced by another complicated process which clinicians feel they don’t have any control over, and can’t do anything about.”
He also questions why stopping food and water needs this level of regulation when clinicians are free to decide to stop other life-and-death treatments, like switching off life-support machines.
“The only decision we do this for is removing gastronomy feeding. If somebody is on a tracheostomy [a tube in the neck to aid breathing], on insulin and you stop that and they die that’s fine. You just can’t [introduce guidelines] for one treatment. That just isn’t sensible.”
And a minority see this decision as a slippery slope. It’s “euthanasia by stealth whereby patients can be dehydrated and sedated to death within one or two weeks when they would have lived for years or decades,” says Dr Peter Saunders, outgoing director of the Care Not Killing campaign.
“If people who are creating what’s perceived as an economic or social burden upon anyone can have their lives ended, where do you stop with that?” he asks. “Once you allow for this scenario where people can be dehydrated to death without recourse to the courts, you’re putting a dangerous temptation in front of healthcare professionals.”
But Steeple disagrees and says it’s about the kindest option, not saving money. “We have all got to follow what we believe to be right,” says Steeple. “If I had drips and tubes coming out of me, and was having to sit in a soiled pad waiting for someone to turn up, on my own in a nursing home ward, what would I want? It’s very easy to hold on to a traditional view when your life’s been protected from the reality of it.”
Rentzenbrink agrees. “It’s a grim affair. If I didn’t know, I’d imagine Sleeping Beauty, and think that’s not too bad and maybe they will wake up one day. In reality it does harm. It’s terrible for the person because even if you think and hope they have no idea of their own being, you still wouldn’t want the people you love to be in a painful, humiliating situation.”