Recently, National Public Radio covered the story about LaCrosse, Wisconsin – the “town where everyone talks about death.” In fact, LaCross is a town where 96 percent of residents have completed an Advance Directive.
What exactly is an Advance Directive, or AD? It is a document that offers important guidance in times of critical illness when patients are unable to speak for themselves. The rest of the country, including Vermont, has only about a 30 percent completion rate for ADs. As a clinical ethicist, I strongly recommend that individuals complete them..
As helpful as they can be, ADs have limitations. It is nearly impossible to predict the context of future illness and guidance within the document infrequently matches up with the situation at hand. Clinicians are obligated by their professional ethics and the law to follow an AD, and we often find we are left to make critical and specific decisions with only general guidance. By default, in situations where it is unclear what we should do, we provide treatment – and this may or may not be what the patient would have wanted.
By far, the most important thing that can be accomplished with an AD is the appointment of a health care agent, also known as a health care proxy or power of attorney for health care. In Vermont, no one is automatically assigned this role by law (such as a spouse, or adult child). The agent should be someone who knows the patient well, and who has engaged in conversation with the patient about their goals and values for health care. The role of the agent is to interpret the general guidance within an AD and apply it to the specifics of the current illness. The agent is not making the choices, but is applying their knowledge of the patient to voice the patient’s choices.
Some might think that these documents are meant to be completed by older individuals, or those who have chronic or life limiting illnesses. In truth, these documents are important for everyone to complete – young and old alike. Three of the most famous cases in medical ethics involved young and previously healthy women: Nancy Cruzan, Karen Ann Quinlan and Terri Schiavo. Beginning at age 18, completing and/or updating an AD at annual visits to primary care doctors, and upon changes to health status is recommended.
These documents are simple to complete, and can be found online. Here in Vermont, we have the benefit of having a wonderful organization, the Vermont Ethics Network (VEN). The VEN website contains information about Advance Directives and other health care decision making, and you can download and complete an AD. Once completed, patients should be sure to give a copy of the AD to their agent, loved ones, primary care physician and their local hospital. It is also an option to mail the AD into the Vermont registry where your document will be stored and accessed by hospitals if you are away from home.
at the UVM Medical Center, the Department of Clinical Ethics (802.847.2000), the Department of Case Management and Social Work (847.3553), and the staff in the Frymoyer Community Health Resource Center (847.8821) are glad to assist patients and other individuals to complete an AD, or to answer questions.
Please join us for “Who’s Your Person? Advance Directives and Advance Care Planning for Vermonters” on Monday, April 11, from 6:00 p.m. – 7:30 p.m. at the Davis Auditorium at the University of Vermont Medical Center. Click here for more information and to register.
Sally Bliss, MSB, RN, is a clinical ethicist at the University of Vermont Medical Center.