Select Committee on Assisted Dying for the Terminally Ill Bill Minutes of Evidence



Two Strong Women A Talk by Libby Drake of South Australia Voluntary Euthanasia Society (SAVES)

  These two women, the victims of disease, were hopelessly but not terminally ill and were in excruciating and unrelievable pain.

  Jo Shearer was a journalist who died aged 56. She had suffered scoliosis, S-shaped spinal curvature, from age 34, moderate at first but deteriorating rapidly at age 54. Her vertebrae protruded through to her stomach, and some of the vertebrae rotated. Apart from the spinal pain, which prevented her from standing, from lying except on hot water bottles, she had Sjogren's syndrome which took moisture from her eyes, mouth and lungs, and meant that she had to apply eye gel every 20 minutes to prevent sight-threatening ulceration. She had pain on breathing, painful tenosynivitis of the hands, and calcium deposits on the knees which grated when she walked. Jo managed to write a diary of her condition and its progression. In desperation, after no effective medical help, she decided to take her life, as was her right, in February 2000. She drank a sedative mixture and pulled a custom-made bag over her head but, unfortunately, while asleep, she pulled this bag up to her forehead, so denying herself suffocation. On waking she was taken away forcibly and detained in hospital for two weeks, apparently under the Mental Health Act. Her time there was even more hellish than before. The medical staff disbelieved her pain, dismissing it as "in her head". On release, Jo was experimented on with a large number and variety of drugs for four months without useful effect. In August 2002, lacking any alternative course, she succeeded in taking her life by a drug overdose.

  Jo died alone, in unrelievable pain and in terror lest her second attempt might fail. Before her death Jo gave her journal to SAVES in the hope that it would be published and used to help others and to assist change.

  The other example of desperate illness was Shirley Nolan, who died aged 60. Shirley was UK born. She and her husband emigrated to Australia in 1971. Her son Anthony was born with Wiscott Aldrich syndrome, an incurable bone marrow condition that leaves the immune system unable to fight infection. Attempts towards a marrow transplant failed, partly because there was no register of donors. In desperation to save her son, Shirley set up the Anthony Nolan Bone Marrow Trust. She worked tirelessly to publicise the tragedy of all those suffering from immune system deficiency and related diseases.

  Anthony suffered a short life of isolation and monotony in a sealed and sterilised unit. He died in 1979 aged 7. Shirley continued her efforts in support of the Trust, which now has world-wide renown, with a network of donor registers and seven million potential donors as well as a research branch. In 2000 Shirley was awarded an OBE in recognition of her charitable work.

  But two years after Anthony's death, Shirley began to have symptoms of Parkinson's disease. She gradually developed distressing symptoms, her self-confidence eroded.

  After an unsuccessful attempt on her life in December 2001, Shirley succeeded four months later by injecting herself with a cocktail of drugs and maximising the time before she would be found. This woman, who was such an advocate of life and who had done so much for others had been forced to die alone, frightened, and by her own hand. In her suicide note, she briefly reviewed her life, especially her work with the Trust that carries her son's name. She wrote that when life no longer has any quality but is reduced to intolerably cruel days and nights of suffering, there should be THE RIGHT TO DIE WITH DIGNITY.

  Both women had been strong and intelligent, had a passion for life, were achievers, became hopelessly ill and suffering greatly, tried every form of medical help available and died alone and afraid. Current laws reduced these great women to a horrendous end.

  Yet in Australia public opinion polls have shown an 80 per cent support for VE.

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