Emergency physicians surely realize that care of our sickest patients is immensely aided by advance directives. Advance directives were born in the early 1990s, at the behest of the court system. U.S. judges want care decisions to be made by patients or their agents, not by the court. The circuit court judges in Maryland formed a task force with hospitals, ethics committees, and doctors, leading to the legislation that established advanced directives, and I have been talking with patients and families about this issue since being involved in this legislation.
Putting aside the question of whether cavalry-to-the-rescue care is right for you or yours, we emergency physicians appreciate it when an individual has put some forethought into the level of care he or she would want, including the use of CPR, ventilators, IVs, antibiotics, and vasopressors.
Why don’t all patients specify what level of care they would want in a medical crisis? While there are many personal and cultural reasons for this lack, one obstacle is that doctors do not aid in this endeavor, as Dr. David F. Baehren mentioned in a recent In the Arena column (“Peaceful Death,” March 2011, p. 2). He remarked that even oncologists, who should be discussing end-of-life care routinely with their patients, do so with fewer than 40% of patients.
I would like to give some tips for opening this subject with patients and families.
First, call the families and loved ones the “survivors.” Without advance directives in place, survivors have a rough time. These surrogate decision makers usually do not feel “freed” by a lack of direction, but rather experience stress, guilt, and interfamily strife, and often second-guess themselves. They regret making choices based on their own value system when it conflicts with what they suspect the patient might do otherwise. The uncertainty can be devastating.
Often, families have vague plans to provide care at home, but a crisis lands their family member in the ICU, which remains a horrible experience for most, despite our best efforts to humanize it. This is highly stressful for the families as well as the patients: The incidence of posttraumatic stress disorder after such a visit can be as high as 40% in the survivors.
Second, I tell the families and patients in the ED that forethought and discussion about medical care is for the survivors as much as for the patient. This often inspires the patients themselves to move the discussion along, whereas they are more likely to be passive if talking only of themselves as the sufferer.
A useful tool available at this time is a 10-page form called Five Wishes, which can be obtained from a national nonprofit organization called Aging With Dignity (fivewishes.org). The form covers appointing an agent to make health care decisions, the level of care desired, and other aspects of end-of-life care. It is meant to be done without lawyers, and needs a simple witness rather than a notary.
Appointing an agent is probably the most critical decision, to avoid the “cousin from Kalamazoo” swooping in with demands and creating turmoil.
Currently in development, new computer apps will walk patients and survivors through the process with scenarios and questions.
But we emergency physicians must still be ready to help, and we’re there to “strike while the iron is hot.”
We can make a difference, we often care more than the other specialists, and we have the tools.
Frame this as a plan for the survivors, and resistance melts away, in my experience. Try it.
Dr. Davis is an emergency physician with the Barnes-Jewish Health System, St. Louis. He is also an attorney and Fellow of ACEP.