Mass customization discussed for EOL care

Article cites need for standards, cost-containment

Not long ago, people generally 'got sick and died,' — all in one sentence and all in a few days or weeks. The end of life had religious, cultural and contractual significance, while paid health care services played only a small part. Now, most Americans will grow old and accumulate diseases for a long time before dying."

Lynn, Joanne. "Living Long in Fragile Health: The New Demographics Shape End of Life Care," Improving End of Life Care: Why Has It Been So Difficult? Hastings Center Report Special Report 36, No. 6 (2005): S14-S18.

As the baby boomers age, medicine is allowing us to live longer, but perhaps sicker, managing chronic disease with medication and replacing parts that have broken down with a combination of medical devices and surgeries.

To Joanne Lynn, MD, that has long been cause for concern, i.e., the idea that many of us will be living longer in ill health. In May, Lynn addressed this topic at a briefing sponsored by The Hastings Center, based in Garrison, NY, with the address by Lynne occurring in Washington, DC. Her address was based on a 2005 article titled "Living Long in Fragile Health: The New Demographics Shape End of Life care."

Lynn, who spoke recently to Medical Ethics Advisor on this topic, suggested in the article that the outcomes of the SUPPORT project (or The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments), which enrolled 10,000 "seriously ill" patients from 1989 to 1994, told us a great deal of new information. (See box, for findings.)

According to Lynn, such findings also provide hope for reforms that could benefit patients in decision-making and care chosen and provided at the end of life. Patients generally follow three trajectories toward death, which in shortened version involves: 1) long maintenance of good function; 2) slow decline in physical capacities punctuated by serious exacerbations; and 3) long-term dwindling of function, needing years of personal care. The problem lies in the expectation that more and more people will fall into the third category, and the question becomes how to pay for this more intensive, long-term care.

Lynn's solution to this increasingly common third trajectory is "mass customization," much the same way that an automaker might plan to meet the common preferences of the largest number of people in the vehicles they design and produce.

"[This approach] gives us a high-leverage way of organizing reform," Lynn told Medical Ethics Advisor. "You know, trying to make every single thing customized to every single patient would work, but it's a very expensive way to think about how to put together care.

"So, if instead we said, 'Patients of this sort tend to use hospitals in this way and nursing homes in that way and use this kind of home care, let's make sure that those things are readily available. And if the patient needs something different, then we'll go out of the boundaries and make that work."

Lynn predicts success of approach

Lynn also predicts the success of this approach based on a similar one used in obstetrics prior to reforms last century that led to expectant mothers to have more options for care, both during the birthing process, allowing for such preferences as home birthing, to breast feeding — things previously not allowed by many doctors up and for which many women had to demand or advocate for themselves to be allowed to do. AT that point, public information campaigns addressing the issues kicked in and led to change. The "revolution" in this instance, Lynn says, is that "obstetricians learned to listen to their patients..."

"But another things is that if you showed up now and didn't say a word, you would get just about the right care, because they've customized [obstetrics] to just about what the public wanted," Lynn says. "And, so you no longer have to argue about whether you're going to have available some elements of natural childbirth, or support for breast feeding or any of those types of things. So, those are built-in. And then, the woman who doesn't want them can customize them out in her case."

Currently, there is a great deal of variability in the quality and types of care that patients who are facing the end of life receive. And that variability from center to center or hospital to hospital, is what needs to change, she says. While care is better than it was 25 years ago, the system still faces challenges.

So, how long might the revolution take before we have a standard-of-care in end-of-life care?

"It's always a matter of approximation…," she says. "So, you know, we've come a long way, but we have a long way yet to go, especially on making care that's reliable and affordable. We have a lot more cases where things went well, but it's not reliable."


  1. Lynn, Joanne . Living Long in Fragile Health: The New Demographics Shape End of Life Care," Improving End of Life Care: Why Has It Been So Difficult? Hastings Center Report Special Report 35, No. 6 (2005): S14-S18.