Death squads have re-entered the health care reform discussion.  For those of us in the trenches of making Health Care quality and efficiency a reality, the strong emotional response to “End of Life” planning is somewhat incomprehensible.  To us, the futility, unwarranted expense,and assaultive nature of invasive procedures during a person’s final decline are stark and real.  Many nurse friends of mine are so passionate on the subject that they say, only half in jest, that their first tattoo will be “Do Not Resuscitate!”  boldly inked on their chests. So why do many people react negatively to the notion of “End of Life Planning”; fearing that it is a screen for a covert agenda to force euthanasia on the elderly, ill and disabled?  Should we simply ignore the reaction as the voice of an ideological fringe element, or is it worth exploring what lies behind the political rhetoric to understand the phenomena better?

                My belief is that ignoring this, and other consumer based responses to the health care debate, is something done in arrogance and at the reform movement’s great peril.  We should be actively reaching out to understand what is involved in the feelings and thoughts of those who voice these opinions, and perhaps the place to begin to understand such a reaction is with our selves.

                Do you have an up-to-date, properly executed Advanced Directive on file with your health care providers and institutions, and thoroughly discussed with your family members?  If not, what are the barriers preventing you from doing so?  Are you somewhat in denial about the possibility that you could be in need of such a document at any moment, even if you are healthy at this time, in other words that you could actually die?  Is it hard to think of who you would ask to execute your desires if the need would arise, or is it simply a daunting idea to obtain the correct document and get it to all the right locations?  What if you didn't even really understand what “resuscitation” or “ventilator” means, and are embarrassed to ask and fearful to take a provider’s precious time  when you have multiple other more pressing issues to discuss in your precious ten minute appointment?

                Deeper and more complex issues may underlie the criticism about the desirability of end of life planning.  A large proportion of our population retains the belief in the powerful and effective nature of medical technology.  This cultural bias is reinforced by TV shows like “House”, where the sixth hi-tech procedure finally saves the patient’s life; given that belief system it only makes sense to keep all intervention options open.  One often hears, in quality improvement and healthcare redesign circles, the issue of poorly aligned financial incentives driving unproductive, and even harmful, medical system behavior.  Average consumers, while not as articulate as insiders, share some of the same concerns.  When they hear “End of Life” planning discussed in the same sentence as “cost savings”, their, not unintelligent response is, “Who benefits from saving costs on my Grandma’s life?”

                So, what I suggest that we do to address these issues?  First, start with yourself and your family.  Get, review and discuss Advanced Directive documents and experience the emotions evoked and face the complexity of the issues that need answers in order to complete the documents.  Then move to the next level and gather focus groups of real consumers and ask them what their concerns are about the documents and how  your local community, medical group and health plan can support them in making their “Future Plans for Health Care”.  The change in language is not accidental as it is important for the focus of such a conversation to be on what health care options, ranging from full intervention to none at all, that an individual would choose, rather than using the already loaded term “End of Life”, which suggests that options are ending.

Then, we need to carry what we learn in these personal and individual explorations into the larger, political, arena.  It is important to ensure that all discussions about End of Life planning are respectful of all points of view.  We need to shift the focus from cost savings to how to support individual consumers in making decisions that are compatible with their belief and value systems.  Having real answers about who benefits and where do any savings go; do they increase specialist salaries, or lower premiums for the average purchaser? Including real people sharing their stories about the difficult and complex decision making that went into their end of life decisions for themselves and their loved ones should change the tone to one of concern and caring.  Invite religious and spiritual perspectives as legitimate and necessary parts of decision making.  Let go of the polemical and realize that these issues are ultimately personal and made by individuals and families.  The fact that most people choose lower intensity services when they are lovingly offered an unbiased discussion of the benefits and liabilities of intensivist end of life procedures should not be the motivating force behind the conversations.  The focus should be that such an approach is harmful to the patients and families, and that our responsibility, as health care providers, is to “First Do No Harm”.

                All these suggestions are based on the concept that for real change to successfully occur it has to be understood by, and meet the needs of, those who are being served and that it is our responsibility to find ways to engage consumers.  Attempting to impose well meaning, and from an insider point of view, clearly beneficial changes, without that engagement, will lead to the virulent resistance to change that so much of the reform effort has encountered.