“It always seems too soon, until it’s too late.”
Humans are good at avoiding difficult conversations. Conversations with loved ones about health matters are particularly tough; end-of-life care discussions may be the hardest of all. Few people want to acknowledge their mortality, so they delay thinking about what they want to happen if the worst happens. Family members are no better at bringing it up. Yet creating an advance directive is one of the most important things anyone over age 40 should do.
Dr. Sean Huggins, an internal medicine physician practicing at East Falls Internal Medicine, is passionate about educating people about advance directives, do-not-resuscitate (DNR) orders, and “coding.”
“People just don’t want to talk about it, but it’s really important and shouldn’t be put off,” Dr. Huggins says about creating advance directives. “Leaving decisions up to family, in the middle of a crisis, is not the way to go. Family members may not agree. And ‘Aunt Myrtle,’ who is two states away and can’t see what the situation is, can’t make an informed decision. Creating an advance directive is really the best thing to do, so there’s no question about what the patient wants.”
An advance directive is a legal document signed by a competent person that provides guidance for medical and health-care decisions in the event the person becomes unable to voice their wishes. It instructs doctors about things like organ donation, intubation, CPR, and other lifesaving measures.
A do-not-resuscitate (DNR) order can be part of an advance directive, or it can be filled out separately. A DNR tells emergency responders and doctors not to take extraordinary measures to keep someone alive. People normally sign a DNR if they have a fatal illness or are elderly. But even younger, healthy people need to plan for a medical emergency and understand what really happens if they need lifesaving treatment in the ER.
“The public should be more aware of codes,” says Dr. Huggins. “TV doesn’t teach us that codes are as serious as they are.”
When creating an advance directive or DNR, patients are usually asked if they want a “full code.” Choosing a full code means that a person will allow all interventions needed to get their heart restarted. It’s exactly the opposite of a DNR, which forbids CPR.
Television has given us a false impression of what it’s like to be brought back to life: A TV doctor shouts “Code blue!” People start running around; someone begins CPR; a nurse places an oxygen mask over the patient’s face. The doctor injects the patient with epinephrine then shocks the heart with the paddles. A miraculous blip appears on the heart monitor, and a life is saved—most of the time.
But reality is much different.
“Most people who code in the hospital, about 80%, don’t recover,” explains Dr. Huggins. “Coding is traumatic, violent, and painful. Some wake up and don’t want to go through it again. That’s why the compassionate thing is to ask people directly, in advance, about what they want done if their heart stops beating or they stop breathing.”
If it’s hard to have an end-of-life conversation with adult children, then people should have one with their doctor. Medicare covers the cost of a doctor visit just to discuss advance directives and DNRs. The doctor can help by asking questions like, “Do you want to live on a ventilator? If not, who should make the decision to take you off the ventilator? Do you want a natural death, or do you want lifesaving measures for as long as possible?” And, says Dr. Huggins, “I [or any doctor] won’t ever deny someone the care they want. Also, advance directives aren’t set in stone. Changes can be made throughout a person’s life, as their circumstances change.”
Patients can leave a copy of their advance directive or DNR in the doctor’s office, file one with their local hospital, give copies to family members, and have it at home.