On April 16th, we honored the sixthNational Healthcare Decision Day (NHDD). NHDD was established with the goal of increasing the number of people who have Advance Health Care Directives (only 30% of Americans have one) and increasing communication about health care wishes to loved ones and health care providers. However, in order to achieve those goals, we must re-think the Advance Healthcare Directive altogether and engage the health care system in a new paradigm.
As it stands now, an Advance Directive legally designates a health care agent (someone who will make decisions for you if you are mentally incapacitated). Most form Directives also ask whether you would want to receive CPR if your heart stopped, and whether or not you wish to be an organ donor. Unfortunately, those limited instructions do not cover the majority of health care decisions, and place an undue burden on the person named as agent. For example, the desire not to receive CPR does not inform doctors or family members about a desire for emergency surgery when the outcome is uncertain.
People I survey casually about Advance Health Care Directives say they have completed theirs with an attorney, in the form of a Living Will. Because it is written by an attorney, a Living Will is often not written in language that is helpful to physicians, containing vague terms like “terminal” and “vegetable”. Although it’s better than nothing, in my twenty years in medicine, I have seen a patient’s Living Will in a hospital chart only once or twice. Furthermore, most physicians I know are not likely to follow a lawyer’s pro-forma instructions when delivering critical care. The other time people create Directives are when they are being admitted to the hospital, and is a result of the Patient Self Determination Act, passed in 1991. Needless to say, the hospital admissions desk is not an ideal time to create a Directive. Furthermore, there is evidence that Directives as they are written today, are not very effective in the hospital. A study in 1996 showed that simply having a Directive-even when there was an effort to convey its content to physicians, did not reduce ICU stays, number of people put on life support or pain experienced by patients. (1) Sadly, it doesn’t appear that much has changed since then. (2) There are many reasons for this, but I believe that that is largely a reflection of the typical Directive itself, which should be reconsidered entirely.
On the other hand, a good Advance Care Plan is done with a medial professional and anticipates some medical decisions based on particular health history. It also reflects your values and priorities, and most importantly, expresses the overall goals you have for your quality of life. A well-written Advance Care Plan can give loved ones and doctors a blueprint to discuss critical decisions about life sustaining treatment, facilitating a dialog that is much more meaningful than “Should we perform CPR?”. It is not surprising that it has been shown that families that have undergone Advance Care Planning have significantly less prolonged grief and increased satisfaction with the health care system after the death of a loved one in the hospital. (3)
To be sure, this is not an easy task and requires special skills, training and significant time to accomplish. To that end, it will require a commitment of resources. Although it will also require a change in mind-set for physicians and hospital administrators, I believe the medical profession must commit to creating better Directives and make a pledge to improve adherence to Directives when patients are unable to speak for themselves. I am glad we now have a National Health Care Decision Day, but without physician’s and hospital’s participation, nothing much will change for patients at the end of life.
Dr. Jennifer Brokaw is the Founder of Good Medicine, a private practice specializing in patient advocacy and Advance Care Planning.