Thursday, September 24, 2009

A look at the way we die

I thought much of the health care reform debate had fallen off the radar until I came across this Tweet from @mike_gamble: "Extraordinary Article! - The Way We Die Now."

I clicked The New York Times link and immediately writer Timothy Egan had me hooked. He found a perfect story to share how we die in this current system. An 88-year-old woman, the mother of a governor and physician, had to make a choice. Die at the hospital or die at home?

She chose her home and her family over the hospital complex. Medicare didn't help with this choice. Her son noted that while Medicare would pay for the tests and treatments in the hospital it wouldn't pay for the $18 an hour non-hospice worker to help his mother during her last four months of life.

Egan's piece also takes an interesting look at an issue that people don't want to talk about. He wrote: "More sensible voices have since joined the debate, asking how we reform a system that lavishes most of its benefits on a cure for the 'disease' of aging."

Another nugget from Egan's piece: About $67 billion — nearly a third of the money spent by Medicare — goes to patients in the last two years of life. The need to spend less money at the end of life “is the elephant in the room,” Evan Thomas wrote in “The Case for Killing Granny,” the cover story in last week’s Newsweek. “Everyone sees it but no one wants to talk about it.”

This summer, the debate became supercharged with rhetoric as the threat of "death panels" was tossed around like a tennis ball. From my personal experience as a caregiver, I have read many stories about government, hospital and insurance intervention on choices that should be left up to the individual. Those stories were from more than four years ago. So, this issue isn't new.

I'm all about living, but we as a nation really need to take a look at how we die.

Thursday, September 3, 2009

ASU researcher addresses caregiver syndrome

There are lessons for caregivers in here. Take a moment to read this.

Leaders need to lead on health care debate

When I was in the throws of chaos from my late husband's medical condition, I reached out to strangers on the Internet.

I found Mary Koch and John Andrist. They were older than Jimmy and me, but very similar. A newspaper background. A life-changing stroke which left John with Locked-in Syndrome. John and Jimmy had the same condition, but were living under different circumstances. John was cared for at home while Jimmy lived in nursing homes.

I relied on Mary and John during those years — an e-mail here and a note there. Each idea or encouragement helped me and Jimmy as we struggled through a health care maze, which often felt more like a war than a journey.

Jimmy died at 37. I called Mary that night. I couldn't share this news with her through an e-mail. John died at 75 almost two years later.

I met Mary on May 30, 2008, when I married Andy. She had kept in touch with me through the years and traveled to Custer, South Dakota. She wrote about our wedding. It's something Andy and I cherish.

Mary, who shared her caregiving journey through a weekly newspaper column, began writing "A Widow Bit" following John's death. You can find it here.

On Sept. 2, I received her latest installment "Confessions of a former reformer." I hope she will post it on her site soon.

The Institute of Medicine claims that each year more than 18,000 people in the U.S. die because they had no health insurance — that's higher than our annual homicide rate, Mary says.

Another point she makes:
I gave up reading murder mysteries in favor of books on health care policy issues. They’re scarier. Most recent: Overtreated: Why Too Much Medicine is Making Us Sicker and Poorer by Shannon Brownlee.
I’m going back to murder mysteries. It’s clear “whodunit” to American health care reform. At the beginning of the year, a large majority of Americans claimed they wanted fundamental changes. Now folks are fleeing the reform camp faster than a pot grower scampering from his field when the government helicopter arrives.
The problem? Too many of us have pretty good insurance and care. Expensive, yes. But we’re willing to suck it up – or let our employer or Medicare suck it up. Reform means change, and people look forward to change with about as much delight as a root canal.
I am tired of all the muck around the debate. I'm tired of all the crazy ideas being floated. If people are concerned about saving lives, we need to quit blaming the Mainstream Media, Congress and those people, who are yelling and foaming at the mouth at these town hall forums.

We need to think about those 18,000, who apparently die each year due to a lack of health insurance. How do we solve that problem?

I believe our leaders just need to step up and lead on this issue. Sometimes, leaders have to make difficult decisions without 100 percent support of the people. It happens in local government all the time.

A local leader has a vision for a new courthouse or administrative building to improve services. Taxpayers, who walk into the old buildings once a year, don't see the need for the new buildings or the tax increase to pay for it. I can think of a handful of county and city projects that were approved in communities with strong opposition. Were the projects needed? Yes. Did the opposition get over it? Eventually.

There will always be someone, who will disagree or say it won't work or say it shouldn't be done. If leaders listen to those people only, no new buildings or parks would ever be built.

I think there is enough ingenuity in this country to get this done — despite the chaos surrounding this issue. Our leadership needs to do what it is supposed to do — lead the way on this issue.