I want to see the law changed to allow people to die at a time of their choosing. I have seen a number of friends and family members die, sometimes in pain and fear which could not be controlled by palliative care, others have died in great distress at losing their autonomy and dignity. However, what happened to a friend about 6 years ago is what finally convinced me that the law must be changed.
Jackie was adopted as a baby and never knew her birth parents. When she was in her early 50s she was diagnosed with Huntington’s Disease – a genetically programmed degeneration of brain cells, called neurons, in certain areas of the brain. This degeneration causes uncontrolled movements, loss of intellectual faculties, and emotional disturbance. Some early symptoms of HD are mood swings, depression, irritability or trouble driving, learning new things, remembering a fact, or making a decision. As the disease progresses, concentration on intellectual tasks becomes increasingly difficult and the patient may have difficulty feeding himself or herself and swallowing and develop dementia. The rate of disease progression and the age of onset vary from person to person.
Jackie was initially positive about the diagnosis but after a few years she was having problems with uncontrolled movements and swallowing and had to give up her apartment and move to residential aged care. At this stage she was desperately unhappy as she found herself losing control over her life and hated where she was living, surrounded by people who were 30 years older than her but she was even more scared of what the future held for her. She had given up driving but still had her car which she had not yet sold. Without discussing this with anyone she left her room one night, got into her car and drove it very fast into a dense bank of trees, killing herself outright.
What she did was not illegal (apart from driving her car without a licence) but she did not have the opportunity to say goodbye to family and friends and she could have lived another four or five years and seen her grandchildren grow up if she had had the opportunity to elect when and how she died. I feel she was forced into taking action while she still physically could and that this was very cruel on her and on her family and friends.