Palliative care has often been associated with elderly people who are dying.
Not anymore. Today, palliative care is more than that. It means supporting patients and their families, no matter their age. And it doesn’t mean that death is imminent.
Mark and Alice Beaty learned this first hand. A year and a half ago, they received a phone call that every parent dreads. Their son Adam had been in a rollover car accident on Interstate 5. He was 27 years old.
Adam Beaty was airlifted to Harborview Medical Center. He was unconscious. When his parents arrived at Harborview in downtown Seattle, they couldn’t recognize him.
“He was so hurt and broken,” Mark Beaty said.
The head trauma was the biggest concern. Adam Beaty's brain had swollen. Doctors gave him medication to help stabilize the pressure.
“We weren’t allowed to touch him or hold him or hug him,” Mark Beaty said. “There was a concern that interaction would cause him to have a reaction.”
It was agonizing to not be able to hold their son.
A week after Adam Beaty was admitted, Mark and Alice Beaty still didn’t know whether their son would live. They were waiting to get the results from an MRI scan. They feared the worst.
“We were talking about Adam’s funeral and what we would do because we thought the news was going to be so bad,” Alice Beaty said. “We felt like we needed to be as prepared as we could.”
It was at that point that a palliative care specialist met with the Beatys. Alice Beaty was expecting to talk about hospice – end of life.
But they learned that palliative care wasn’t about that. In their son's case, he had a team of specialists to help treat his injuries to his head, lungs and bones. The palliative care specialist helped them look at the big picture, the long road ahead.
“At one point she asked us to think about what kind of recovery would be OK with us,” Alice Beaty said.
“And what would be OK with Adam,” Mark Beaty added, “what would be acceptable with Adam.”
The Beatys said having a palliative care specialist was like having a mentor and advocate to guide them through the complex maze of health care and the decisions they would have to make, like when doctors took Adam Beaty off the ventilator and placed a tracheal tube.
“For me this was the scarier time,” Alice Beaty said. “We knew we were making a decision to carry Adam for a very long time, medically. We had no idea if he would come out of the coma any more. If he didn’t, then what?”
Had Adam Beaty’s accident happened in the 1990s, palliative care wouldn’t have kicked in unless he had been near death. By then, it would have been too late for his family to makes choices for his care.
Dr. Randall Curtis, director of the Cambia Palliative Care Center at the University of Washington, said the results were not often good.
“There were studies that showed that many patients were dying in (intensive care units) on life support, when their expressed wishes were to not die that way,” Curtis said.
Curtis said part of the problem was that doctors and nurses weren’t willing to talk about prognosis. “They thought they would take away their hope,” he said, “but if the patient doesn’t know what their prognosis is, how can they possibly make decisions about what kind of care they want?”
Curtis launched Harborview’s palliative care program in 2003. What doctors have learned over the years is that patients and families need support early on. And they need to have conversations about the good, bad and likely scenarios they may encounter during the illness.
This is where palliative care can help families consider what matters to their loved ones, Curtis said. “What are their values and goals, and what would they find acceptable in terms of outcomes in terms of health care and the quality of their lives?”
Doctors in turn can prescribe care that matches the patient’s wishes.
More hospitals are incorporating palliative care in their programs. It’s estimated there are more than 1,400 such programs around the country.
In 2013, the Cambia Health Foundation awarded $10 million to UW’s palliative program to build on that work.
It’s been more than 18 months since Adam Beaty’s car accident. He doesn’t remember the accident, but he remembers the day he came home from the hospital.
Before the accident, he was a sociable and independent young man who loved driving his Jeep. These days, he tires easily and is more withdrawn. But he’s determined to regain his strength. He works out every day. “I’m feeling good about my progress,” he said.
Depending on how his shoulder heals, Adam Beaty plans to try golf or kayaking.
His parents remark on how far he’s come along. After three months in the hospital, and months of physical rehab, he is starting to come out of his shell. They’re grateful for the support they received during those tough times.
“I can’t imagine a better experience,” Mark Beaty said. “I can’t imagine having it gone any better than it did in a terrible circumstance.”
Editor's note: In our series “Vital Talk: Between Life and Death,” reporter Ruby de Luna explores how families and doctors are tackling conversations about the end of life.