Want to know what’s wrong with the health care system for older adults in the US? It can be summed up in that 10-word response on a physician’s voice mail.
One evening last month, I got a panicked call from a friend: She came home from work and discovered that her widowed mother, who has been living with her for the past year, had—for the first time—an episode of bowel incontinence. Her mom, who was distressed and almost certainly embarrassed, wanted to go to the emergency department of the local hospital. What should her daughter do?
Mom’s breathing was normal, she was steady on her feet, she wasn’t unusually confused (she suffers from mild dementia). She had no headache or vomiting. It was pretty obvious that she did not need to go to a hospital. Instead, she needed to be cleaned up and comforted, and both she and her daughter needed a good night’s sleep. At that moment, the emergency department may have been the very worst place for her.
But why, I asked, did her daughter call me? Had she called her mom’s physician? “That was the first thing I did when I got home at about 5:10,” her daughter told me. “But the office was closed and the recording said, ‘If this is an emergency, go to the emergency department.’”
That trip to the ED would have meant hours sitting in an uncomfortable waiting room that was very likely filled with other patients with flu or other infectious diseases. She might have been kept overnight for some of those ubiquitous tests. None of this would have done her any good and could well have caused serious harm. And it certainly would have wasted thousands of Medicare dollars.
Just imagine an alternative universe where a worried daughter’s early evening call to a physician is answered by a human—perhaps through a nurse helpline. Imagine that my friend had access to a case manager who could have helped her with valuable advice when her mom first moved in. Imagine access to high-quality home care or an adult day program or even friendly visits. Or a training class where an adult child can learn skills such as how to safely transfer mom from a bed to a chair or how to recognize warning signs that do require immediate medical attention.
Imagine a system that focused on helping an older adult with chronic disease live as well as possible, not one where the default is an unnecessary—and dangerous–ED visit.
All this is possible today, but not easy to get. For the most part, medical and supportive care is delivered in an incredibly incoherent and inefficient way. One reason is money. My friend’s mom is not eligible for Medicaid. But she has Medicare, which would have happily paid for that ED visit but won’t pay far less for a care manager or a nurse helpline (at least not in traditional fee-for-service Medicare).
And this inefficient financing system only encourages a medical culture that remains stubbornly focused on aggressive treatment and “cure” rather than social support. Hospice is an exception, but only if you are dying. Other programs, such as PACE, provide well-coordinated medical and social care but few participate. Medicare’s managed care program, Medicare Advantage, might be an answer but is still evolving and its long-term benefits remain uncertain.
Keep my friend’s story in mind when you consider a new study that finds that despite all we have done to improve end-of-life care and palliative care, the percentage of people in the last year of life reporting pain, depression, or confusion was higher in 2010 than in 1998.
The full paper, by Adam Singer and colleagues, was published in the February 3 issue of Annals of Internal Medicine. It’s behind a paywall but here’s a nice summary by Singer from the Altarum Institute’s Medicaring.org site.
The authors can only speculate about why these efforts are falling short. But perhaps for their next paper, they can ask caregivers such as my friend. I suspect they’d get an earful.