by Victoria Brewster, MSW
I am currently reading the book Always Looking Up: The Adventures of an Incurable Optimist by Micheal J. Fox.
You might remember him from the show Family Ties, the Back to the Future movies and Doc Hollywood. He is a fellow Canadian who was diagnosed with Parkinson’s at the age of 29 (from the province of British Columbia). Over twenty years later he is still going strong, has a foundation for Parkinson’s and is a big supporter of Stem Cell research which could be the solution for neurological diseases or at least be immensely helpful in finding a cure.
One chapter in this second book (the first was Lucky Man) has a chapter that focuses on End-of-Life issues regarding his sister who had a history of epilepsy. She had major brain surgery to remove the part of the brain that was affected and 15 years later suffered a major brain hemorrhage which left her in a vegetative state. She was being kept alive by a respirator. According to the physicians, she could not live without oxygen being forced into her body.
Is this what she would have wanted? Did the family want this? Although the terms Advance Care Plan, Will, Mandate, Power of attorney are not mentioned in the book, it is clear that the family, meaning the mother, siblings and husband had to make this decision.
The siblings said their piece to the mother and dying sister’s husband and then a decision was made-take her off the respirator. What made this decision easy was they all agreed, but what if they didn’t? What if the husband wanted her kept alive just in case? This would not be the time to have this discussion or argument.
What had a huge impact on me, was reading how the whole family surrounded her at bedside once the respirator was removed, shared memories, stories, laughter, tears-in a sense, they celebrated her life. She left this world surrounded by her family.
Is this not what we all would want ourselves? She was 57. That is young considering the average age of my clientele is 80 plus.
Some further resources which I just came across today on LinkedIn: