Advance Care Planning

“Advance Care Planning” is a critical part of providing good care at the end of a person’s life. Yet, the vast majority of Americans don’t do much planning for the end of their lives. Most people instinctively turn away from morbid thoughts like death and dying. All of us will die some day, but thinking about death and planning for the end of life are just too difficult.

But what if the unthinkable were to happen? What if a sudden illness or crisis happens that leaves you or your loved ones incapable of making your own decisions? What will happen in the weeks, months, or years that follow? How can you ensure that you or your family members will receive the care you want? Advance care planning is a process that helps people think about and articulate their goals and wishes for medical treatment and care, well in advance of a crisis.

An Unexpected Medical Crisis Happens

I thought my family had all the pieces in place, until the crisis happened and that’s when I realized how woefully unprepared we were. My 91-year-old father had fallen in the early morning hours and was unable to get up from the bathroom floor. My brother called 911 and had him taken to emergency. A few days later, my father was stabilized and was about to be transferred to a rehab center. Right before he was about to be moved, medical staffers descended on me all at once with all sorts of questions. Should he get CPR (cardiopulmonary resuscitation) if his heart stops? Should he get electro-shock treatment? Should he be put on a ventilator if he stops breathing? Would the cure be worse than the disease? The doctor needed answers right away because she had other patients to see.
Dr. V.J. Periyakoil, Stanford School of Medicine
But these were life and death decisions—and I had no idea how to answer these questions. I’d never talked to my father about any of this. I felt overwhelmed—what should I do? What would he want? Dr. V.J. Periyakoil, Director of Palliative Care, Education, and Training at Stanford University’s School of Medicine, says many family members are often confronted with the same dilemma when facing a medical crisis. “Because by that time the patient is too sick to be able to have a voice in their own care, their family members have never had this discussion with the patient because no one guided them,” said Periyakoil, “So as a result, they’re sort of making these very high-stakes decisions in the dark. They, because they love the patient so much, are caught up in the deep, emotional trauma and it’s very hard for them to be able to make decisions.”

If family members can’t speak on behalf of the patient, Periyakoil says, aggressive, heroic measures will generally be used to prolong the patient’s life. “The system default is to do everything possible, every treatment possible, even though the treatment might be ineffective and the treatment may be something the patient doesn’t want,” said Periyakoil.

I found out later than if CPR is used on a frail person like my elderly father, it might do more harm than good. CPR involves pushing down into the chest at least two inches deep and at least 100 times per minute. Then, an electric shock is sent to the heart to get it to beat again. If CPR is successful, all that pounding on the body usually results in major trauma, including broken ribs, bruised lungs, and bleeding. The odds of my father leaving the hospital would be very low.1 Yet, because of my ignorance, I almost checked off the “yes” box to CPR.

My father’s primary care physician and I should have sat down with him long ago and figured out what he’d want at this stage in his life. Maybe he’d want every life-prolonging procedure possible, including CPR. Or maybe not. The only way to find out is to ask. Advance care planning starts with a conversation, that would have given my father the opportunity to tell us if he wanted invasive treatments such as CPR, electro-shock, feeding tubes, ventilators, or IVs.

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