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Dying too late: What worries my mother about end-of-life care

A photo of my mother from when she was in her vital 60s holds a prominent place on a wall of family portraits in my bedroom. Hands on hips, she takes a jaunty pose for the camera. That was 30 years ago.

Then my mother was living on the farm with my father, picking green beans out of the field to process for winter meals and caring for her aging parents, both in their 90s. They died respectively at ages 93 and 98. My grandmother faded into dementia than had a stroke. My grandfather suffered a stroke but lingered in the hospital unconscious on IVs for more than a month. I was more or less oblivious to all of it. My father died of heart failure at 80 after 10 years of decline.

At 79 mother remarried to enjoy nine great years with Howard. It wasn’t until Howard’s death when mom was 89 that she realized that she might be getting old. Her “live-in-the-moment” forward-looking attitude continues to keep her mentally young even as her body is truly wearing out at age 98.

Years ago, my mother talked about her father’s prolonged ordeal in the hospital where he lay unconscious for days before letting go. “When I get that old I’m just going to stop eating,” my mother said once. That hasn’t happened, yet. Since fracturing her hip two years ago, mother has been living in an assisted living care center. She barely has the strength to lift herself out of a chair and into her wheel chair. A stroke some years ago affected her vision. That said, she’s still making it to the dining room three times a day, to the Bingo table several times a week. She calls me to remind me when the Denver Broncos are playing and this week wanted to know about her great-grandson’s first week of third grade.

I mention all this because for my mother, life’s trade-offs still weigh-in on the positive side. She’s engaged, interested and alert. By alert, I mean she’s on the look out against a perceived medical emergency that could put her at the mercy of the health care machine. Despite signed paperwork to the contrary that might happen.

Six weeks ago she tipped over getting out of her chair at the care center. After five hours of observation and after my mother said she did not want to go to the hospital, the night crew called paramedics who immediately carted her to the ER at 10 o’clock at night. She was kept up while technicians ran her through an MRI machine, did x-rays and then stuck her in a hospital bed on an IV, which leaked into her arm. It took her two days to get out after a “hospitalist” physician said she was fine and sent her back to the care center. The total cost of this episode was some where north of $10,000. Medicare and additional insurance covered most of the expense. Mother hated every minute of the experience.

It took a week to get her strength back. She now has new signed Advanced Care/Scope of Treatment directives in her file at the care center saying that in a medical emergency, she is to be made comfortable and remain at the care center, unless she is in serious pain.
More recently (as related in my previous post) on a routine visit to her dentist, he advised that she have all her lower front teeth removed because of infection. He would then make her a new lower “partial” to replace the lower teeth. My mother was to go to an oral surgeon for the procedure. A slam dunk.

Mother had reservations. After several conversations, she decided to visit the oral surgeon for an exam but not have the procedure. He was reasonable about the trade-offs. “If your mother doesn’t want to have this surgery, she doesn’t have to,” he said. “At 98 there are risks.” Care center staff reinforced those concerns…what would her recovery be like, would she be able to ate, how much of a set back would this be?

After weighing the pros and cons, my mom said she would like to “put off” the surgery. Bravo for her.
She’s not in pain. She’s back to the Bingo table. Back to eating with her companions in the dining room. In a couple of months she will llkely see the oral surgeon for a check up.

This was not the story I was going to write about mom’s ongoing jousting with the health care system, until I read this week’s excerpt in the Wall Street Journal by Katy Butler about her mother’s end-of-life health care decisions. Butler’s book, “Knocking on Heaven’s Door: The Path to a Better Way of Death,” is out this month from Scribner.

In the excerpt, Butler describes her 85-year-old mother’s decision to forgo heart-valve surgery and instead remain at home, facing death with the help of hospice. “She died well because she was willing to die too soon rather than too late,” wrote Butler.

Unlike many of the people living at the assisted living center, my mother knows what day it is, knows what time it is. As long as she’s winning at Bingo, she’s going to hang in there. But she too wants to die well. I know in the back of her mind she’d like to make it to 100… on her own terms without the help of the plugged-in biotech American health care system. Please, no more trips to the hospital.

“Medical overtreatment costs the U.S. health care system an estimated $158 billion to $226 billion a year. About $550 billion of Medicare’s annual budget pays for medical treatment in the last year of life.” — Katy Butler from her book, “Knocking on Heaven’s Door: The Path to a Better Way of Death.”

See more from Julia Anderson at www.sixtyandsingle.com.

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