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The Last Taboo
Howard Gleckman, KHN
August 14, 2009
We live in a time when seemingly no subject is taboo. People discuss, in excruciating detail, their weight, sex lives, and bank accounts on reality TV. Kids tweet about their dates—in real time. And we happily blog away on our latest medical diagnosis. It is apparently no longer possible to have Too Much Information.
Yet, there remains one subject Americans seem unable to talk about in an honest and rational way: the inevitable decline of old age. We see this fear in the frenzied controversy over whether Medicare should pay doctors for end-of-life consultations. And we see it in the unwillingness of Congress to confront those very real long-term care issues that are barely skirting the margins of the health reform debate.
No matter that 10 million Americans currently need some form of long-term care, either at home, in a nursing facility, or in some other group setting. No matter that as many as 40 million of us are helping provide this help for family members and friends. It is as if those who need this assistance and their families have been Photoshopped out of the picture.
Mainstream media are terrified of frail old age. You’ll rarely hear about it on Oprah. Health reporters are regularly shot down when they propose stories on the subject. When I was looking for a publisher for my book, Caring for Our Parents, I met with one editor who couldn’t have been more enthusiastic about the proposal. He called it powerful and important, just the kind of book his house would want. Yet, a few weeks later he passed. Why? It was killed by the marketing department. "We can’t sell it," they told him. "Too depressing."
People are more than happy to talk about what’s become known as the Third Age—those post-retirement years when relatively young and healthy elders travel, volunteer, or find exciting new careers. Books such as Abigail Trafford’s My Time, or periodicals such as the AARP magazine, whose August cover boy was Bruce Springsteen, are hugely successful. Perhaps because they mostly disregard frail old age.
Two-thirds of those 65 and older will need some long-term care before they die, according to a 2005 study by Peter Kemper, Harriet Komisar, and Lisa Alecxih. Yet we fail to plan for it, either as families or as a society. If we just shut our eyes and wish really hard, perhaps it will all go away. Denial, the old joke goes, isn’t just a river in Egypt.
It is a big reason why financial advisers can’t sell long-term care insurance. One told me in despair, "I can’t get clients to think about retirement when it means golf and time-shares. How am I going to get them to think about paying for nursing homes?"
Politicians, not surprisingly, are no different. For most, the battle over health reform is more than enough. Ask them about financing long-term care, or finding new ways to deliver community care, or improving the lot of front-line caregivers, and you’re likely to get a blank stare. If, say, the idea of a public health plan dies, it will be done in by powerful political opposition. But if long-term care issues fade, they will die of neglect. Much like the people these reforms are intended to help.
There is, of course, one aging issue in the health reform debate that has generated plenty of attention: the bizarre fight over whether Medicare should pay for end-of-life counseling. A seemingly innocuous proposal for reimbursing doctors for their time has become, to some at least, a step toward government "death panels" that will decide whether our parents live or die.
It is easy enough to say this interpretation is built on ignorance or political demagoguery. But it resonates with much of the public. And, in part, that may be because it plays to this same reluctance of Americans to confront frail old age and inevitable death.
In the end it is about fear. Frail old age and death are unfamiliar, so they are terrifying. But any therapist will tell you the best way to deal with fear is to confront it. That’s just what we need to do with long-term care.
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