With technology, intensive care units have gotten better and better at saving lives, but medical professionals are realizing that they may have lost something along the way - the humane care of patients and their families. In our ongoing healthcare series Diagnosed, Andrea Smardon reports on efforts underway here in Utah to humanize critical care.
As a medical resident, Samuel Brown was drawn to intensive care for the typical reasons.
“I thought the intensive care unit was this fascinating place, of this battle of clinicians against the specter of death… so I was drawn on the traditional adrenaline junkie model of working in an intensive care unit,” he said.
But Brown also had another side to his personality. He was passionate about the humanities - history, philosophy, and questions about the meaning of life. So as he pursued his medical career, he kept his other interests going on the side - a separate world from the intense and technical requirements of saving lives.
But things changed for Dr. Brown when his wife was diagnosed with cancer in her eye. She had to have her eye removed. And Brown learned what it felt like to be a family member in the hospital navigating a time of crisis.
“And realized the incredible degree of casual and accidental brutality in our contemporary medical system,” Brown said.
He watched as his wife squirmed in pain and nausea as a surgeon pressed on her eye during an examination, apparently not noticing or caring about her discomfort. Doctors seemed unwilling or unable to answer questions about what to expect. Even as a doctor himself, Brown struggled to get information.
“As you worried and afraid and disoriented, struggle through some of the most difficult experiences of your life, there’s a powerful technocratic institution that has its own rhythms and agendas, and priorities. It’s clearly interested in delivering high-quality medical care - this system that we live in, but doesn’t care that much about us as human beings. “
Brown decided it was time to bring his separate lives together - the world of science and medicine, and the world of culture and humanity. He wrote a book as a kind of manifesto to reform the ICU called Through the Valley of Shadows. He also spearheaded a new Center for Humanizing Critical Care at Intermountain Medical Center.
Dr. Brown came to the conclusion that if you want to humanize the ICU, you need to consult with the experts. They are the patient families.
“For me this question of how to maintain that human awareness, is to make sure that I invite the experts to the humanity of the person to the table, because the world experts on the humanity of the person in the room are the people they love and who love them," Brown said.
One of those experts is Brian Grow. I meet him for our interview at the ICU where one year ago his wife nearly lost her life. The emotions come rushing back for Grow, but surprisingly, they aren’t all bad.
“It feels a little like a home that I once had, spending so much time here. Not all of the memories were great, but there was so much care and compassion. It was a milestone in our life that won’t be forgotten ever,” he said.
Grow’s story is hard to hear. He came with his wife to the hospital for what should have been a joyful time, the birth of a baby, but after their baby was born, things took a terrible turn. Grow found himself along with a medical team pushing his wife from labor and delivery to shock trauma.
“We were running to those elevators and leaving the elevators as my best friend and spouse…. completely went unconscious.”
They made it to the ICU where a sea of people were ready to dive in and save her life. After two surgeries, she was stabilized in a medically induced coma. And Grow spent two weeks there with her as part of the team that would see her through to the other side. Because of Intermountain’s policies on families, he was able to stay with her. Medical staff included him in their regular rounds as they determined the course of action for his wife.
“And those became incredibly important for me to sit in the room with the professionals and be a part of the conversation. Those interactions were so beneficial to me, and I can’t imagine being locked out of those,” Grow said.
Dr. Brown says not so long ago, Grow would have been locked out.
“Visiting hours used to be heavily restricted," Brown said. "You could come back for like 20 minutes three times a day to see your loved one. And the loved one is totally separated from their family at their time of greatest suffering and fear."
Brown says the thinking around including families has shifted here at Intermountain Medical Center and at hospitals around the country. He says they’ve even had family in the room for complex medical procedures because it helps to calm the patient. Another thing that’s changed, they now follow up with patients after they leave. For Grow and his family, life after the ICU was a big unknown.
“I wish I could say it was 100 percent full of joy… it was hard,” he said.
Grow says he relied on the doctors at the ICU as his wife encountered all manner of struggles from delirium to mysterious pains. Meanwhile, Grow and his young children have been coping with their own emotional challenges adjusting to the new normal.
"So this has been a lifeline to be able to have this place to come back to.”
Now Grow wants to give back and help the ICU team by sharing his experience. He's part of Intermountain’s Patient and Family Advisory Council. It was created so that doctors and medical staff could benefit from the experts - those who know first hand what it means to be a human in the medical system.
Support for Diagnosed has been provided in part by our members and Intermountain Budge Clinic, a multi-specialty clinic offering care for every member of your family in one location. Details found here.