The COVID-19 pandemic caught most Americans by surprise, showing us the many ways we were not prepared for a widespread health emergency. At the University of Virginia, two professors of nursing say we should have trained more medical professionals in how to help patients and their families face the end of life.
For decades, the University of Virginia Medical Center has been a pioneer in helping people deal with the discomforts of dying. “Pain, shortness of breath, fatigue, also being able to help people alleviate their suffering – emotional, spiritual and so on," says Ken White, a professor and associate dean at the school of nursing.
That’s also the mission for Tim Short, an associate professor and director of the Education Institute at Hospice of the Piedmont. Our society, he says, has lost touch with this last experience of every living thing.
“In the United States we’ve almost come to believe that dying is elective,” he says.
UVA has long had specialists to help patients and their families through the end of life, but during the COVID pandemic, Short says, there weren’t enough specialists to go around.
“Suddenly, nurses, physicians, health care team members of all disciplines, find themselves at the bedside of patients that are dying or in grave trouble, and they haven’t been trained for that. They’re uncomfortable in that role, and it’s happened with such a volume that it’s overwhelmed the system.”
That left other members of the medical team to fill in – often resorting to medical jargon people didn’t understand, and failing to grasp the true nature of end-of-life care.
“The typical model is healthcare providers come into the room," Short says. "They explain: here’s what’s going on, and then they step back and look at the family and say, ‘What do you want to do?’ And the family is a deer in the headlights. They’ve never been in this intersection before. These decisions, at the end of the day, are about how to love, how to honor, how to respect – not a risk/benefit analysis.”
So Short begins the conversation differently– talking with the patient or, if they’re not able, with their family.
“You know I know a lot about your mom’s medical condition. I’ve gone through all her charts. I’ve talked to her doctors. I’ve looked at all her scans and her labs, but I don’t know about who she is as a person. Do you mind if we start there? Can you tell me a little bit about who your mom is, and what’s important to her?”
Ken White often waits until the doctor has left to find out what the patient needs to know. His first question: “What did you understand from what you just heard ? And often it’s, 'Nothing. We’re not sure.' They get sort of mixed messages: ‘We could try this, we could try that, we could do another round of chemo,’ but they don’t really have a feel for what more would do to them and to their quality of life.”
He and Tim Short agree – end-of-life care needs to be part of the training for every student who plans to become a nurse or doctor – not only for the patient but for the health care professional.
“These conversations – they’re really hard. It takes a toll on you emotionally,” Short says.
“They felt like they had failed, because they were not able to fix the problem,” White recalls of healthcare professionals when patients have died.
And Tim Short compares end-of-life conversations to surgeries.
“If they’re done poorly, they really can be harmful. It they’re done well, they can be really healing and helpful.”
In his best-selling novel, Cutting for Stone, author Abraham Verhese argues that one important treatment in an emergency is administered by ear: words of comfort. If that’s the case, then learning what to say at the end of life could be as important a skill as any for frontline health care professionals.