In 1997, the prestigious Institute of Medicine issued a wake-up call: Americans need much better deaths. Care provided at the end of life was failing patients and families, and a complete overhaul was in order.
It's been almost 20 years since that landmark report, but new research suggests that dying has only gotten worse since then.
Reports of patients experiencing pain near the end of life increased 11 percent between 1998 and 2010, according to a new study published in the Annals of Internal Medicine. Reports of depression and periodic confusion also increased 26 percent over this time.
"There were certainly reasons to think that things were getting better," said Joanne Lynn, the author of the report and a palliative care clinician. "We were using hospice so much more, there was more use of narcotics and so much more attention to symptoms, there was reason to think we were doing better."
Lynn sees two major possible explanations for her conclusion. Patients and family members could be expecting more from the care provided and have "reset their thresholds" over the 12 years in this study. Another is that the number of treatments have increased, allowing patients to live longer with the diseases that ultimately kill them.
"Maybe we've made more medical stuff coming at people that maybe let's them live a little bit longer, but under much more burdensome circumstances," said Lynn, who heads the Altarum Institute's Center for Elder Care and Advanced Illness.
As my colleague Peter Whoriskey writes, a new book on the failures of end-of-life care supports this claim. It argues that doctors are programmed to "do everything" to prolong life, even if it doesn't help, causes pain and is unwanted.
There is one hopeful sign that Lynn found. Reported pain in cancer patients remained stable in the 12-year period she studied — it didn't get better, but it also didn't get worse. Though, she also worries about the role the increased reliance on prescription painkillers may have played in this.
Her researched analyzed nearly 7,200 patients over 50 who died while enrolled in the nationally representative Health and Retirement Study. People participating in the long-term survey were interviewed every two years until their death — after which someone very familiar with the person's health and financial situation provides information on the patient's end-of-life care.
The IOM, which issued that 1997 report, again last year recommended a massive overhaul in the way the health-care system treats patients at the end of life. The group found there was a "mismatch" between services most readily available at the end of life — short-term, episodic treatments — and what they want most: support services. Among other recommendations, the IOM also flagged an increasing demand for more doctors trained in palliative care, as well as better communication with patients.
There was notably some frank public discussion about dying last year, though you don't have to look far for reminders in the news about how frustrating and difficult it still is for patients and families to experience a comfortable death.
Still, end-of-life care is naturally an unpleasant thing to plan for, and Lynn points out there's little in pop culture that force us to confront the challenges we face in our final years. That's why Alzheimer's patient advocates have been highlighting the critically acclaimed new movie "Still Alice," which depicts a linguistics professor struck with early on-set Alzheimer's.
If anything, Lynn said she hopes her research will be a wake-up call to focus not only on finding new cures for diseases, like dementia and Alzheimer's, but to find better ways of making patients comfortable at the end.
"You're still going to have to find some way off this terrestrial globe," she said, "and it may as well be as comfortable, meaningful, dignified and inexpensive as it reasonably can be."