The post below originally appeared on The Off-White Papers blog on Forbes.com
By Craig Hatkoff, Irwin Kula and Zach Levine
One of the most intractable and politically charged problems in the U.S. healthcare system is end-of-life care. Unlike other third rail issues it only took two words—death panels—to put a screeching halt to the much needed public conversation about how we address medical care during the last six to twelve months of life. While she managed to remove the payment provisions for end-of-life consultation from Obamacare, Sarah Palin’s quip about death panels also put the final nail in the coffin and the much-needed public debate was DOA. Unfortunately that didn’t alter the immutable facts about end-of-life management. It is projected that total U.S. health care expenditures will reach $5 trillion by 2022 from its current level of $3 trillion. A disproportionately large percentage of total national health care expenditures, roughly 2 to 1, occurs during the last twelve months of life with nearly 30% of all Medicare spending is incurred during the last six months of a patient’s life. The extrapolations for end-of-life care in the future are truly sobering.
We all know there are no silver bullets when it comes to healthcare, but one very promising opportunity to dramatically improve the “tenor of care” during the inescapable end-of-life process for all Americans is the use of a legal form know as an “advance directive.” This document, which varies from state to state, typically includes a living will, a durable power of attorney and/or health care proxy. The advance directive gives legal authority to implement the wishes of a terminally-ill patient once they become incapacitated in regard to what medical interventions should be administered. This includes decisions such as intubation, cardiac resuscitation and pain relief. Last week the Institute of Medicine released its 500-page report entitled “Dying in America” providing an opportunity to re-engage in the public conversation. The report concludes that “ a person-centered, family-oriented approach that honors individual preferences and promotes quality of life through the end of life should be a national priority.” But how does one go about doing so given that only an estimated 25-30% of Americans have executed advance directives. Are there any models out there that we can look at?
Imagine a town of 50,000 Americans where 96% of those who die have signed an “advance directive” codifying their conscious decision about how they would like to die. This is quite an accomplishment given we haven’t been able to move the needle at a national level beyond 30% over the past 30 years. By definition every possible polarized constituency in this town–conservative and liberal, religious and secular, Republican and Democrat, rich and poor–agree on one of the most divisive political and social issues in America. Welcome to La Crosse, Wisconsin–a Midwestern everytown USA that has managed to transcend Sarah Palin’s death panel rhetoric not only to become the “cheapest place to die in America” but, more importantly, they have transformed the entire “tenor of care” for end-of-life planning.
How on earth did they manage to pull this off? By engaging in a disruptive communicative innovation: they all talked about it. La Crosse’s achievement is a perfect example of what we referred to in a recent post as quantum innovation. In “identity-centric” domains like healthcare with its many stakeholders entailing people’s values, beliefs and world views, disruptive innovation is not fundamentally driven by technology–it’s about people, their relationships and trust. In La Crosse the simpler, cheaper and more accessible innovation that was good enough to get the job done was the ancient art of conversation. Hmmmm. Talk is cheap… but effective.
Here’s what they did:
It all started with humble beginnings in the 1990′s a when local medical ethicist named Bud Hammes, Gundersen Healthcare Network and the leaders of the major health organizations in La Crosse, Wisconsin, collaborated on the development and testing of an improved model of end-of-life planning and decision making. Now called Respecting Choices Advance Care Planning, the original idea was to create an end-of-life plan for these patients while they could still make conscious decisions. Within two years, advance directives in La Crosse rose from 2 percent to 45 percent.
By 1995, 85 percent of people that died in La Crosse County had an advance directive and by 2009 the number had reached 96 percent–more than three times higher than the national average. The national average of medical cost for a patient’s last two years of life is $26,000 (in some hospitals as high as $65,000); the average cost in La Crosse, is just $18,159. More importantly, knowing patients’ wishes ahead of time ensures the best possible care and relieves debilitating emotional and financial stress for families. Family members don’t have to debate about what their loved one would want for treatment and avoiding decisions made in the spur of the moment.
What do we learn from La Crosse? Here are four takeaways:
(1) Conversations and relationships matter. Over a thirty-year period the end of life discussions in La Crosse became part of the local DNA. Everyone talks about it.
(2) Innovation in end-of-life care requires highly personalized local solutions where the patient and the family are at the center of the process, not at the periphery, and the healthcare professionals are part of the local community.
(3) While the end-of life advance directive document is standardized, the process for each patient and family will be unique and intimate. Simply handing a patient or family an advance directive form and telling them to fill it out doesn’t work. Completing an advance directive is not a technical skill but a psychological and familial journey requiring engagement of those we most love and trust.
(4) Accessibility of records. By automatically embedding the directive into the patient’s electronic medical record all providers up and down the chain of care have access to the document and know the patient’s wishes.
Can this approach be scaled? Gundersen has pioneered a comprehensive advanced planning process which according to Hammes, Director of Respecting Choices at Gundersen, “not only is transferable [to other communities] but also speaks to the commonness of the shared human experience on this issue, regardless of race, religion or color.”
With the miracles of modern medicine it is tempting to demonstrate our love for the dying through “loyalty signaling” engaging in heroic measures to buy an extra day or a week–even if the patient is ready to embrace death with dignity. There is no more gut-wrenching decision to make for family members than when to let go allowing a loved one to end life peacefully. Knowing in advance the patient’s desires can relieve anxiety and grief by “following their final wishes.” How to die in America needs to be re-imagined. With sixty percent of Americans already believing that death panels do or might exist this will be no easy feat. But we now know how. Intimate conversation and reflection about how we want to live as we die. Perhaps Sarah Palin should spend some time in La Crosse, Wisconsin.