My sister Patricia Ellard died in August 2016, with glioblastoma multiforme, an unsurvivable brain tumour. She was 58 years of age. Prior to her cancer Trish was an IT manager, the life and soul of any party, and extremely fit and active. She ran marathons. She was intelligent, articulate and very much in control of her life.
As the tumour progressed it took from her all we who loved her would recognise as Trish. She knew this was happening and resented it so much. She lost her balance, her ability to process thoughts, her words, her eyesight. She lost her freedom because she could no longer drive, or catch a bus. She required someone to be with her 24 hours of the day for the last few months, so she lost all sense of privacy and control.
Everyone knew she was dying, but being so fit she outlived her doctors expectations. Trish did not have the capacity to take her own life, but she begged everyone who came near to 'tap her on the shoulder, and send her to sleep.' She became so distressed mentally toward the end of her life, she refused to eat or drink, laid her clothes out on the floor in preparation for the White Ladies, and insisted she had a time booked for them to collect her.
We could not manage Trish's care at home because there were fifteen stairs she could no longer negotiate, and we were relying on a wheelchair and taxis to get her to appointments. The current healthcare system could not accommodate her in an appropriate setting. She was not eligible to stay in acute care as she was chronically ill. Nor was she able to have hospice care as she was not imminently terminal. We had no other option but to place my sister in an aged care facility. While the care there was exceptional, it was entirely unsuited for someone of Trish's age or personality. Entertainment involved balloon tennis, bus rides, 1940s films and Vera Lynn on the radio. She became very depressed, felt she had outlived all usefulness and was a burden to her friends and family. Being brutally honest about her disease, she had already said goodbye to her many friends and was now just lingering. She spent her final two weeks sedated to manage her emotional distress.
Watching my beautiful sister go through this was traumatising for all; her family, herfriends, and those who cared for her. While we miss her terribly, we cannot be sad she finally achieved the peace she craved. I believe that if the legislation had been different regarding physician assisted suicide, many people, including me (a registered nurse), would have ended her suffering. This includes her oncologist, her GP, and the gerontologist who were all extremely sympathetic to her plight, but were constrained by current law.
By Eileen Ellard RN BN CCN
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