COLUMN: Health Talk & You: The failure of long-term care
The failure of our long-term care system is America's best-kept embarrassing secret.
Almost every adult in this country will either enter a nursing home or have a parent or other relative who does. Demographic studies suggest that 40 percent of all adults who live to age 65 will enter a nursing home before they die. Even more will use some other form of long-term care.
Some people believe that the key to dealing with long-term care is adequate preparation, and that insurance and planning should suffice. Alas, even such steps are not sufficient. You simply cannot rehearse the trials that long-term care subjects you to. That is why the system has to change.
My sister and I learned this first-hand, while arranging long-term care for my mother. She suffered a debilitating stroke and spent the last years of her life in rehabilitation, assisted-living facilities, and finally a nursing home. Our experience taught us that if a researcher with a 30-year history of studying long-term care could not navigate this process, it is very likely broken.
Along the way, our family encountered some professionals who were kind and considerate, but also many frustrations: inadequate care and the need to hire private duty aides, as well as poor communication and lack of coordination throughout the system. Our long-term care experience proved far more difficult than it needed to be.
In preparing a book on this issue, we replicated our own experience, collecting stories from more than 700 other people around the country who had experienced similar frustrations trying to get the system to work. It's clear that our long-term care system needs major revisions.
Our current system is essentially risk-averse and life-defeating. We put so much energy into trying to communicate rules for safety that we haven't created incentives to create good lives for these people. When people actually do provide good care, we should pay them more for doing a better job.
We should also end the false marriage of services and living situation. People should not have to give up their autonomy and enjoyment of life in order to receive long-term care.
What can consumers do? First of all, it's important to recognize that the people who work in the system - from hospital discharge planners to the people in long-term care - are first and foremost agents of the institution for which they work. They will keep that institution's best interests in mind when they are dealing with you. When you purchase these kinds of services, you need to be as active and wary a consumer as you are when you buy a used-car.
The state of long-term care in the United States is a national crisis, a silent epidemic. We have an enormous stake in improving the system, yet this issue has not received the attention it warrants. As a nation, we need to rally together to create the long-term care system we deserve.
Robert Kane, M.D., is a professor and endowed chair in Long-term Care and Aging, University of Minnesota School of Public Health, and author of the book, "It Shouldn't Be This Way: the Failure of Long-Term Care" (Vanderbilt University Press). This column is an educational service of the University of Minnesota. Advice presented should not take the place of an examination by a health-care professional. For more health-related information, go to http://www.healthtalk.umn.edu.