The Institute of Medicine's recent report "Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life" has rekindled an important conversation about what's covered in the Medicare program's benefit package.
Each year, more than 8 in 10 Americans who die are insured by Medicare, but that doesn't mean people are necessarily happy with the care and service provided by the program. Recent research by me and colleagues from Duke and the National Institutes of Health - published in the Journal of Clinical Oncology - identified some big gaps between the benefits covered by the Medicare program and the stated preferences of patients with cancer and their family caregivers.
We enrolled 440 Medicare beneficiaries with cancer as well as their caregivers and ran 10- to 12-person discussion exercises. We asked participants to identify what care they thought was most important for Medicare to cover for cancer patients near the end of life, if they couldn't pick everything. The resource constraint we imposed forced them to make difficult tradeoffs.
Around half of all study participants allocated some money away from currently covered medical treatments and toward three benefits not covered by Medicare: home-based, long-term care to help the elderly and families deal with disability; concurrent palliative care, which would allow people to receive hospice-like services earlier in their disease without having to first stop receiving curative care; and cash that beneficiaries could use for whatever they saw fit.
These choices in the study were possible only when participants chose less of something now covered by Medicare.
Interestingly, the preferences and choices of patients in somewhat similar circumstances differed greatly when they had a chance to share their views and to hear from others. Some participants remained firm in their initial choices while others changed their minds after participating in the discussion. One in five participants chose all three uncovered benefits, shifting on average $3 of the $10 they had to spend away from medical treatment and toward care designed to improve quality of life. Some simply tweaked what they would choose to receive, while others were not interested in the new benefits.
The three noncovered benefit choices range from the somewhat likely to be covered soon by Medicare (concurrent palliative care), to the seemingly outlandish (cashing out part of your Medicare benefit), to a practical means of partially addressing the biggest public policy problem that almost no one talks about (paying for some home-based, long-term care for the baby boomers).
Can we expand Medicare's coverage of types of benefits and trust patients and families to decide among different types of care as they face disability and death, and do so in a way that doesn't increase costs? Our research suggests that patients with cancer and their caregivers - those directly dealing with the reality of illness, disability and death - are able to have reasoned conversations about these difficult issues and are prepared to make hard choices for themselves.
The most challenging implication of our study is realizing how hard it will be to reproduce on a national scale the honest and rich dialogue between patients and caregivers about care preferences near the end of life that we observed in our study. Determining how to engage this important conversation nationally is vitally important if we are to best care for the growing number of elderly people in our nation.
Donald H. Taylor Jr. is an associate professor of public policy at Duke University. He blogs at www.donaldhtaylorjr.com.