Briefing papers THE LAST TWO YEARS OF MARIAN'S LIFE WERE HAPPY Nine years earlier, she was diagnosed as "P.V.S." This is a happy, contented human being, with an acquired brain injury, who deserves the opportunity of life. "Cabbage" - the ultimate misnomer After a brain haemorrhage in 1983, Marian Hillam, aged 42, was found unconscious. In 1985 and again in 1987 she was diagnosed as being in a "Persistent Vegetative State", with no possibility of improvement, so, although excellent nursing care was provided in the local hospital, therapy and stimulation were minimal. Her parents refused to believe Marian was unaware. In 1990 her mother, Lilian Sallery, arranged for her transfer to the Putney Hospital, now the Royal Hospital for Neuro-Disability. As she says, "Marian went to Putney in an ambulance, on a stretcher, and returned sitting up in a wheelchair on the train." After this she was admitted to the Leonard Cheshire Home, Colwyn Bay, where everyone's disability is considered a "challenge". Miss Pat Hughes, the Head of Home, who had earlier experience with head injuries, started intensive physiotherapy and stimulation. Marian made friends, appreciated her surroundings and had a happy and interesting life. Sadly, Marian died in 1994 after a short illness. Post-mortem examination revealed she had been in a "locked-in state", perfectly aware of what was going on, though unable to say so. Her parents had been right, all the years they had fought for her. Misdiagnosis A report in the British Medical Journal (July 5th 1996) by Dr. Keith Andrews, director of the Putney Hospital, showed that 17 out of 40 patients referred to him as "vegetative" were conscious, and were enabled to communicate by using electronic devices or eye movements. Three-quarters of these patients improved following expert treatment. Sensation of thirst persists after damage to cortex Since the case of Tony Bland, other patients diagnosed as "P.V.S." have been deprived of tube feeding and fluids following a Court decision, so that they died of dehydration - capital punishment by a cruel means. This has led to widespread acceptance by hospital doctors of this method of ending the lives of patients such as victims of a stroke. Dr. Peter McCullagh, in a recent study of the scientific literature, reported that the neurological centre for thirst is located in the hypothalamus, which lies deep in the brain. "Whilst other parts of the brain are required for the behavioural patterns that occur in response to thirst, sensation of thirst can be demonstrated to persist despite very severe damage to other parts of the brain, for example decortication."* Help, not death Lillian Sallery campaigned for a nationwide network of small intensive rehabilitation units of 4 to 6 beds to help victims of brain injury regain control of their lives. For the best chance of recovery, rehabilitation must start without delay. Preventing unnecessary disability is cost effective. An organisation in Germany, founded in 1991, now helps 4,500 families with a brain-damaged relative who is cared for at home. No family is more than 35 miles from a rehabilitation centre. Funding is shared equally between charities and the Government. Mrs. Ann Rogers, who cared at home for her son James who was hit in a road accident, wrote to a House of Lords Committee: "It will be a very sad day when this country admits it is so impoverished financially and morally as to have to deny the sanctity of life to some of its people."** Please ask your M.P. to SUPPORT THE SETTING UP OF REHABILITATION UNITS FOR BRAIN-DAMAGED PATIENTS WITHIN REACH OF THEIR FAMILIES STOP THE KILLING OF PATIENTS LIKE THESE BY STARVATION AND DEHYDRATION *"Thirst in relation to withdrawal of hydration", C.M.Q., February 1996, by Peter McCullagh, MD, D.Phil, MRCP, Senior Fellow, John Curtin School of Medicine, Australian National University. ** Report of the House of Lords Select Committee on Medical Ethics, 1994. Published by the ALERT Carers' Group, c/o 27 Walpole Street, London SW3 4QS. Telephone 020 7730 730 2800. Fax 020 7730 0710. If you are a carer, will you join the group?