One of the first and most important things that a patient diagnosed with malignant mesothelioma learns about their disease is that it is always considered fatal: the rare form of cancer caused by exposure to asbestos is always deadly, and when the end comes, it can be excruciating. Australian resident Tim Edwards, who was 67 when he died last February, understood that and worked hard to avoid a difficult ending. While he was unable to achieve his goal, his family is continuing his fight for terminal patients to choose the way that they want their lives to end.
According to Tim Edwards’ family, the worst part of his pleural mesothelioma illness came in the last few weeks of his life, when he became increasingly dependent on his family and began losing the mental sharpness he had always prized. According to his widow Jan, “He started to get very, very frustrated and angry in the last two months because he didn’t have the energy to think,” she said. “He had three horrible weeks, absolutely awful weeks before he died.” She was speaking at a panel discussion on end-of-life choices, recounting the family’s experiences in the 13 months between her husband’s diagnosis and death.
The family was well aware of how Mr. Edwards had come to have malignant mesothelioma. Originally from Canada, he had worked for a summer at a brick kiln when he was 17 years old, and had been exposed to significant levels of the carcinogenic material. Even more than their grief over the loss of their loved one, the family is speaking up about their believe that people should be able to manage their own death, and how much he focused on the topic in his last few months of life.
Mrs. Edwards spoke of her husband’s pain and reliance on others, and how angry and frustrated he became as time went on. “There was just so much anger and fear and pain and negativity. I know how soul-destroying it was for him to have to go through that for no good reason. It just made it a really bad end.”
Euthanasia is a topic of much discussion in the mesothelioma community, and Mr. Edwards recorded a video message about his frustration less than a month before his death. In it he said, “I will slowly turn into a frail, pain-ridden person who has to be manhandled to the wash room and all of the things you have to do for someone who is totally incapable. Surely I have the right to make my end as good as it can be.” Australia overruled the passage of laws introducing assisted death, and in the United States the issue is controversial as well. However, hospice has been able to provide some relief and introduce some choice about quality of life and death.
If you or someone you love has been diagnosed with malignant mesothelioma and need assistance with any of these challenging issues, contact the Patient Advocates at Mesothelioma.net today at 1-800-692-8608.
