“I’ll be glad when this is over.”
I hated hearing those words. How could you not want to hold on to life?
My older brother, Joe, had been suffering from chronic lymphocytic leukemia, and although he had been vibrant and continued to work for about seven years after his diagnosis, it had finally caught up with him. He was losing the battle, and he was suffering.
He was only 54, the father of three. He had lost so much weight, I could carry him myself to the bathroom. He lived on the couch for months and barely moved. Hospice was not an option, as he wanted to be home.
My younger brother and I alternated helping him and his family each night, a difficult task, seeing him slip away and also knowing that’s what he wanted.
He made it to his daughter’s wedding, in his wheelchair, but he died during her honeymoon. My brother Ron was there that evening, and I raced as fast as I could after I got the call that Joe was slipping away.
I didn’t make it. His last words to me, that I remember, were those at the beginning of this article. They’ve haunted me for 20 years. How could he wish his life away? How could he not want to hold on?
I tried to understand, but I couldn’t. I was tormented about it for years.
And now I’ve changed my mind. Two things have occurred to help me better understand Joey’s mind and psyche at the time. One is my own life and health, and the other is the detailed discussion of President Obama’s health care plan.
The president would like to include a sick care plan as well as a health care plan in his legislation, and I support him. Obama’s proposed end-of-life counseling for patients and their families became controversial, with critics throwing out terms like “death panels” and “granny killing” and calling it a step toward euthanasia.
Two federally funded studies published last month in the New England Journal of Medicine (and the subject of an Oct. 15 article in The Daily Gazette) revealed that a “surprising” number of Americans are suffering from futile care at the end of their lives.
One study followed patients with failing kidneys and found that, among the elderly, 58 percent died within the first year despite going through the rigors of dialysis.
The other followed elderly patients with dementia, and found that despite aggressive care, 25 percent died within six months and half died during the 18 months of the study. In both groups, most died from other health-related issues rather than those they were being treated for.
Many medical experts say this new research shows that palliative care for the terminally ill and those approaching it “emphasizes the need for doctors, caregivers, and families to consider making the feeble elderly who are near death comfortable rather than treating them as if a cure were possible.”
I would expand it to all who are suffering from non-curable disease, despite their age.
While I support the president’s sick-care panels (although I believe they’ve been dropped from the plan), I also understand why some people don’t. They are me in 1992, looking at my brother and wanting him to be cured, to live and to stay with us.
I know now the president is correct in his belief in managing suffering and advising the sick and their families about their choices and how to face them. My brother, in so many words, told me so all those years ago.
The other reason I’ve changed my mind has to do with my own health.
Shortly after my brother’s death I, too, was diagnosed with chronic lymphocytic leukemia. Fortunately for me, the treatments and drugs developed in the past 20 years have made it a manageable disease, and I have done quite well over these years.
Still, I have had other health-related problems that gave me insight into the suffering of the sick. In my trips to the chemo lab and an unrelated extended stay in the hospital this year, I spent a lot of time with the sick and elderly.
I spent many months in the hospital and a rehab facility that doubled as a nursing home. I saw a lot of sick and lonely people living out their lives in a hopeless condition with limited expectations for the future. I saw people who barely recognized their families, who moaned through the night, some bent at 90 degree angles never to stand up straight again. I saw families come to visit and heard some laughter and joy occasionally, and then I saw them leave and felt the loneliness of the patients as they left.
The families certainly don’t know what else to do. They are leaving them in good care, care they can’t provide themselves. They may not see the sadness and suffering that is not a life but an existence.
This is a personal story. What will be happening in the halls of Congress in the next many weeks will be a non-personal debate, argued by congressmen and women on a philosophical or political basis, not from personal experience. But it is personal, and every family will be affected by it.
Care for the sick and elderly is a major piece of the health-care debate and one that will eventually touch all our lives. What to do with the ever-growing population of elderly is a major dilemma, and it is not going away.
Where is the nearest nursing home? Can they fit me in? How is the care? These are familiar questions to many of us.
Obama’s plan to sort out the needs of our elderly and sick and to plan for their future, in whatever way, is a good and necessary one. The panels would not necessarily be about euthanasia, but care and treatment of the ill. They would help the sick and their families make better-informed medical decisions. And they would bring more doctors into patients’ lives, since my observation included one floor doctor making rounds once a day with very short visits.
Rights of patients
I hated the very idea of euthanasia when death came knocking at our family’s door some 20 years ago. As a civilized society, we can’t bear the thought of it. But it’s not just about us, it’s about those who are suffering, too. Forcing people to suffer just so we can keep them with us, somehow believing in continuing life and hope when there is neither, is not civilized or humane.
The patients’ bill of rights should include these words: “I have the right not to suffer, to have my pain managed and be counseled in my last months, weeks or days. And to face my death as I lived my life: in both joy and challenge.”
I hope the day comes when none of us will be forced to plead, as my brother did, for a way to end our lives with dignity and pride. These counsels would be a positive step in that direction.
Anthony Frank lives in Schenectady and is a regular contributor to the Sunday Opinion section.