Barbara Shelly

Dying happens, so we should get better at it

Updated: 2013-07-16T22:55:30Z

By BARBARA SHELLY

The Kansas City Star

According to research published in a leading medical journal this week, more than half of Americans 50 and older are incapacitated in the last month of their life. The longer you live, the greater are the chances you’ll need help with activities like dressing, bathing and eating.

It’s always good to have data. But a lot of people won’t find the material published in JAMA Internal Medicine to be much of a revelation. They’ve already done firsthand research with elderly parents and relatives.

We know that old age brings incapacitation. My mother, Kathryn Shelly, died in May at age 88. She spent the last six weeks of a long and eventful life tethered to an oxygen tank, needing help to move from a hospital bed to a chair.

I asked John Carney, president and CEO of the Center for Practical Bioethics in Kansas City, if he thought we were prepared to deal with the oncoming tidal wave of elderly people dealing with disability in their final weeks or even years.

“In America?” he asked, sounding incredulous.

It seems there is a joke among bioethicists. America, they say, is the only place on the planet that thinks of death as optional.

We do love those images of senior citizens working out in the gym or happily playing with the great-grandchildren. If you only watch the ads from the drug companies and retirement communities, it’s possible to think of old age as an endless recess, interrupted only by a smiling nurse dispensing the essential pill or two.

But for most families, the reality involves falls, labored breathing, gaps in memory and bewildered discussions.

Like most people confronted with a loved one’s decline, my siblings and I stumbled around a rocky terrain. We had hoped for my mom to spend her last days at home, but she died in a hospital a few days after breaking a hip in a nursing care facility.

In the weeks before that, we talked with doctors, palliative and hospice nurses, social workers and therapists. They were all compassionate and skilled in their roles. But their roles sometimes pulled in different directions. Should my mother have been doing physical therapy in the nursing home when the objective was to get her home and into hospice or palliative care? Honestly, we didn’t know.

Compounding the difficulty was what seemed like a reversal on my mother’s part. After declaring for as long as I can remember that she didn’t want to “hang around” when she was old and infirm, she seemed determined at the end to hold on.

It turns out there is a name for this. “Moving goalpost syndrome,” Carney said. People’s attitudes change as they approach death, he explained. “They still have a perception of their own quality of life. They still have things they want to do.”

Carney, who has spent three decades working on end-of-life issues, thinks the medical profession, families and entire communities must approach the issues of aging and disability with a new mindset. Essentially, it’s about respecting and valuing people in that stage of life.

“It’s really imperative that we draw from their collective wisdom,” he said.

So true. Bedridden and on oxygen, my mom shared memories of times most precious to her. She dispensed her trademark tart advice right up to the end.

Though her health had declined, my mother was fortunate to live fairly independently until her final couple of months. But the JAMA research found that half of the people who live to be 90 or older are disabled two years before their deaths.

We want to look away from these people with their wheelchairs and oxygen tanks. We don’t go into their nursing homes unless we have to. In restaurants, theaters and even churches, they’re looked upon as somewhat of an inconvenience when in fact they are a precious resource.

Death isn’t optional and neither are the infirmities that precede it. But we should look for more and better options for how we deal with the inevitable.

To reach Barbara Shelly, call 816-234-4594 or send email to bshelly@kcstar.com. Follow her at Twitter.com/bshelly.

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