This is Loredana Alessio-Mulhall. She has had multiple sclerosis for 37 years. She is 63. I want to help her to die with dignity.
Up until about five years ago, Loredana was a teacher of English, the last few years of which she did from her wheelchair. Now, Loredana’s body has finally succumbed to the insidious disease that is MS. Her healthy, sharp mind and soul are trapped in a body that will never again make the simplest of moves. Loredana wants to die. Perhaps not today, but one day, at a time of her choosing.
Loredana lives alone, requiring assistance to do everything – to eat, to dress, to bathe, to toilet, to move an inch. She qualifies for the maximum care available which is seven hours a day. For the other seventeen, Loredana is alone in her flat either in her bed or her chair, unable to move, waiting for the next carer’s shift to start for some relief and company.
Her only connection to the world, her last form of control, is the device installed on her telephone which allows her to blow into a tube to make or receive calls. Sometimes, frustratingly, her mouth cannot reach the tube because it is millimetres too far away, and the call remains unanswered.
Loredana still has sensation in her body. She just can’t move. Whenever I am there during the hours that a carer is not, she might ask me to move her leg, or her foot, or perhaps her fingers because they have started to dig in to her leg. She tells me how she can lie awake for hours at night, her fingers painfully clawing her leg, while she, unable to move, cries out to an empty apartment. It is not until her first carer arrives at 7.30 in the morning that she is provided with any relief.
I have visited Loredana a number of times in the past year. She continues to tell me she is a positive person and, under ordinary circumstances, of course she would not want to die.
But she is very afraid of what is ahead. The MS is now eating away at the nerve endings to her eyes and attacking her voice box. This understandably terrifies her. Loredana knows she is facing a future where her healthy mind and soul are smothered by a body that is slowly, excruciatingly, shutting down.
Loredana was searching for lethal medication in the years before she was totally incapacitated. Now her predicament is heartbreaking.
Loredana, who receives assistance to stay alive in every undignified way imaginable, wants to die before her life becomes more wretched. If she was able-bodied she could suicide. But she cannot even lift a straw to her mouth. If anyone else, out of a sense of compassion alone, assisted Loredana by mixing a substance and guiding a straw to her mouth - all at Loredana’s command - they would be trialed for manslaughter.
The law as it stands is so senseless and cruel. We are given every assistance to live an undignified life, but none at all when we want to die with dignity.
Cate Faehrmann intends to introduce the Rights of the Terminally Ill Bill this year. The proposed legislation would ensure that a patient who has a terminal illness and who is experiencing unacceptable pain or suffering can receive assistance to end their life if that is their wish. This assistance would take the form of the provision of a substance that the patient would themselves administer, or, in the case of severe physical disability, be provided assistance to administer.