Having Your Own Say

I am struck by how much innovation in the health care field in the United States comes from the heartland, rather than from the coasts.  Those living near the oceans like to think of themselves as the leaders in medical research and education, but the real advances in the actual delivery of care more often seem to come from the Midwest.  It is striking, too, that people in that region don’t wait for or expect state or local government to set forth a path.  They don’t blame the system or require changes in reimbursement policy or practices to be be made or mandated before they act to make life better for patients and families.  Perhaps advances in this region occur because of a greater sense of communitarianism, combined with much lower levels of academic arrogance.  Whatever the reason, good stuff is happening “out there,” and we need to take note of it.

An excellent example is set forth in the book, Having Your Own Say, edited by Bernard J. Hammes, director of Medical Humanities and Respecting Choices at Gundersen Lutheran Health System.  If I were to simplify the theme of the book, it is that advanced directives (ADs) are insufficient when it comes to end-of-life planning.  Drawing on the experience of the GLHS and other places, the book demonstrates the importance of an ongoing process for advance care planning (ACP).

Hammes notes that while ADs and similar mechanisms “have created important tools for documentation, by themselves they do not fully resolve the real, tragic moral dilemmas faced by so many families.”  The folks in La Crosse, Wisconsin, therefore developed “a more comprehensive model to help individuals and families create personal health plans for these morally complex healthcare decisions.”  He explains further that this view led to the creation of a new role, an ACP facilitator, based on the following philosophy:

The focus on knowing patients as people means that assisting them in care planning starts not with legal documents or forms but, rather, with interactions and conversations.  It means in investing in interactions where persons can better understand what choices the need to consider; thoughtfully reflecting on those choices in light of their views, values, and relationships; and, finally, discussing these ideas and plans with those whom they most love.  It also means undertaking these conversations in a way and at a pace acceptable to the persons.

A key point is that conversations do not occur only once.  They are revisited as life goes on and circumstances change.  That alone is a significant difference from how most people employ ADs.

The book provides a thorough description of the GLHS approach and also offers examples of similar models from other places.  I won’t summarize those here, but I will include excerpts from the portion of the book in which we hear from family members.  These are moving and validate the path taken in La Crosse.  Here is a comment from Jeff Loken, reflecting on the death of his parents:

It is so important to plan ahead.  If the time comes when you need to make a decision for your loved one, you do not want to be guessing.  ...[A]s my parents’ wishes changed, we modified their advanced directives.

Even more important than the document, though, is the conversation that surrounds it. To me, the conversation is critical.  You cannot just hand someone a document.  You need to talk about it, explain your thoughts, and have a dialogue.

Greg Loomis, who helped his father deal with kidney failure, agreed:

The conversation [with the ACP facilitator] was eye-opening for me.  With a third-party present, I learned things I never knew about my dad -- not only his wishes for healthcare but also things about his career and how he raised his children.

There is an important point raised in the book:

[H]ealthcare institutions and the news media love to tell stories of new technological breakthroughs and medical miracles....  Here we have identified an unexpected but important new “breakthrough” in medicine.  This breakthrough is not a new drug or test or treatment; it is a new way to organize our care of patients with advance illness so that they can live as well as possible for as long as possible in the way of their own choosing.  The “miracle” is that this new care depends more on human interaction and coordination than on technology and science.  The wonder is that it costs less to deliver but is actually better.

Here’s the real lesson.  If we view things in this manner, any place in the world can do it.  It does not depend on new government policy.  It does not depend on a change in payment methodology.  It does not depend on accreditation rules and regulations.  The power to make these kind of change resides in the people who have been given the privilege and responsibility of running our health care institutions.

In short, the necessary condition for this kind of approach to be adopted is the support of executive and governance leaders.  That leadership often is based on a remarkably simple set of values, tied to a clear sense of institutional purpose.

As noted by Gundersen Lutheran CEO Jeff Thompson:

Why we pressed down this path has everything to do with the well-being of patients, families, and the health professionals who care for them. It is to preemptively answer the question, “What would your parent, your spouse, your loved one want in this situation?”  The purpose is to avoid anyone needing to say, “We wish we knew.”