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.
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.
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 .
Former NBC anchor Tom Brokaw plans ahead
Jennifer Brokaw made sure her father went through advance care planning, well in advance of a medical crisis. Her father is former NBC anchor Tom Brokaw. Jennifer is an emergency care physician and patient advocate in San Francisco. In 2012, she conducted an advance care planning discussion with her father at a TEDx talk at Stanford University.
“People who have prepared some sort of statement leave their families in much better shape, emotionally and financially, than those who haven’t,” said Dr. Brokaw.
Her father agreed that advance care planning is important.
“There’s a fixed certainty we’re all going to have to deal at some point in our lives sooner or later with a lingering illness or certainly with death,” he said.
During their on-stage discussion, Tom Brokaw made it clear he didn’t want his life prolonged at all costs.
“I want to be conscious and I want to be able to talk and communicated with the people I care about,” he said, “I think a lot about severe spinal cord injuries and if I’m confined in some way at this point in my life, I don’t want heroic efforts just to keep me alive on a resuscitator.”
Two years after their TEDx talk, the unexpected happened. Tom Brokaw was diagnosed with multiple myeloma, a form of bone cancer that attacks the spine. After the initial shock wore off, Brokaw worked with his doctors on a treatment plan to manage the disease. He opted against a stem cell transplant operation because of his age, the risks involved, and the long and difficult recuperation period.
His daughter Jennifer says that advance care planning gave him important guidance and psychological preparation for the critical decisions he needed to make.
“He was able to think about this cancer in a less scary and more organized way,” she said.
A recent study at a major palliative care symposium shows that having end-of-life conversations with patients can reduce their stress and anxieties. Tom Brokaw was fortunate to have a doctor in his family as his patient advocate.
The vast majority of Americans do not have conversations about end-of-life care with their doctors, particularly people who are younger, poorer, minority, and less educated. Death is an uncomfortable topic for most people. Dr. Jennifer Brokaw says many doctors tend to shy away from delivering bad news.
The medical community's efforts to promote advance care planning
To encourage advance care planning, Medicare recently announced it will reimburse physicians and medical professionals for conducting end-of-life conversations. The problem is, most medical professionals have had little or no training in advance care planning or how to converse with patients.
However, medical schools such as U.C. San Francisco and Stanford University are now offering courses on advance care planning and communication skills. Both Stanford and UCSF use immersion learning techniques that involve medical students participating in class exercises with their fellow students and role-playing with actors, sometimes in front of video cameras.
In Dr. Brook Calton’s UCSF course on advance care planning and improving communication skills, medical students are learning how to carry on conversations by taking turns playing the roles of patients and doctors. Empathy and sensitive language are important when talking to dying patients and their families. Calton told her students that in the past, most physicians had paternalistic attitudes and "I know what's best " and "This is what you have to do."
Those attitudes are starting to change but Calton says even today, many doctors tend to interrupt their patients and not listen. Her students are learning to listen closely to patients and converse with them, using simple language without the medical jargon. Open-ended questions such as “What brings you joy?” or “If time were short, what is most important to you?” are good ways to start a conversation. That can lead the way to more difficult follow-up questions such as “We’re worried you’re not getting better. What do you know?” and “How much do you want to know?”
Carrying on an end-of-life conversation can be difficult and awkward at first. It takes skill and patience to find the right language.
"You feel tongue-tied, telling a patient, because you don't know whether they will start crying,” said Stanford’s palliative care director Periyakoil, “You don't know whether you can control your emotions, so it's incredibly important to role-play this.The key is, you need to be able to voice these words out loud, in a safe environment where you're not talking to a real patient. Because you don't want to be with a real patient who's in distress, try your skills, and get it wrong.”
It's never too soon to start the conversation
Advance care planning is not just for the elderly or the terminally ill. Death can occur at any age and it's good to be prepared, in case the unexpected happens.
In her role as a palliative care specialist at UC San Francisco, Dr. Dawn Gross has led many end-of-life conversations with patients of all ages. On her KALW call-in show "Dying To Talk," Gross recently led an on-air advance care planning discussion with her two teenage children Josh and Isabell.
Gross wanted to make sure they know and understand their parents' final wishes, without all the guessing and uncertainty.
"The best way to free us is to have these conversations, so that we can find ways to honor peoples' lives,” said Gross. “This is so not about 'how do you want to die' because we have no control over that. It's how do you want to live until you die and the only way to know is to talk about it."
My father and I never had that discussion. After spending nearly a month in a skilled nursing facility following his collapse, he was more than ready to go home. We dodged the bullet this time. But my father is nearing the end of his life. Issues around CPR, shock treatment, and ventilators will come up again and I still have no clear answers.
My father is now very frail and has dementia. It's too late to have that end-of-life conversation. Complex questions are now beyond his comprehension. Like many family members who waited too late, I'll have to make my best guess at what his wishes would be when we cross that bridge.
JoAnn Mar's report is part of The End-Of-Life Radio Project, made possible by a grant from the Association of Health Care Journalists and The Commonwealth Fund.