Final Words
By Richard Pretorius, Washington Post, May 17, 2007
When I wrote "My Mother's Haunting End," about the health care system's failings during my mother's last hours, I knew that by telling her story I would be expressing the sentiments of many. But I could not have imagined the flood of e-mails I would receive. They were full of anger and insight, pain and compassion -- and above all a desire for change in a medical system that had caused lingering harm.
"The local hospice had no room for my mother. I drove around town checking out alternate facilities. Then she was transferred by ambulance to a nursing home where a full month's basic charge (not including 'non-essentials' such as diaper changing, mouth feeding, etc.) was required for admission," wrote Grace Atwood.
Jeanne Ramage Green's husband died on Feb. 4, 2007. "No one told us how bad the cancer in his lungs was. ... Not one doctor in the four months after the cancer was discovered to have recurred told him that his cancer was terminal until four days before he died," she wrote.
Just as pained were those charged with caring for such patients. Susan Johnson, a geriatric care manager in Bethesda, wrote: "I hope it is some small consolation that your story will impact many who have read it and we, who feel some passion for our work, will be motivated to get it better the next time. No, we could not have changed your mother's diagnosis or her prognosis, but surely we could have gotten her a peaceful death with dignity and good pain management."
Laurie Lyckholm, an oncologist at the VCU School of Medicine in Richmond, wrote: "People like you and your Mom are why I went into this work. Things are so broken in this country's health care. ... The thing that seems to open eyes most is when people find themselves in similar situations. Although I would not wish that on anyone, it seems the only way people finally understand."
I fear she may be right. I cried many times while reading these e-mails -- for my mother, for me and for the courageous souls who reached out to share their most painful memories.
"I now have cancer," wrote a former hospice worker in Virginia named Nancy. "Like Elizabeth Edwards, I am 'incurable' but not yet 'terminal.' Having seen what I have seen of what cancer does to you at the end, and the hell patients and their families go through with the medical establishment, as well as the inadequacies of even hospice care. ... I don't plan on riding the disease till the end. When it gets close, I will find somewhere peaceful and end it on my own terms, and save us all the ordeal of the American way of death."
Hundreds of people have written to tell me that my article prompted them to rethink how society treats the dying elderly. I will never forget the haunting words of Robyn Johnson of Laytonsville, Md., "My mother died November 3, 2006. We too experienced the same attitude you experienced while she was at the rehab center following her stroke in September. ... The patients in these facilities seem to have little rights. They are old, often suffering from dementia, and no one listens to their calls for help. It is a nightmare. A nightmare I do not want to live or die through should I say. I will kill myself first."
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