THE CORONAVIRUS PANDEMIC has brought inspired scenes of heroic health care providers engaged in an all-out effort to save lives. But what about helping those at the end of life have a good death?
Many of those dying from COVID-19 are elderly patients in hospital intensive care units, connected to ventilators and other life-support technology. It’s become a grim ending for many who have fallen victim to this horrible disease.
It also raises a lot of very difficult questions about death and dying in America, a subject we are not very good at dealing with, said Dr. David Duong on this week’s Codcast.
“I think that we as a society have been quite resistant and quite hesitant to have conversations around death and dying because of our cultural context around it and how it’s the end. It’s the final, it’s a defeat,” said Duong, a primary care physician and internist at Brigham and Women’s Hospital. “In our medical care system, it is giving up. I think we need a reframe or a reshift of that to [the idea] that dying is really the next stage of life and it’s the next chapter, and how do we want to be in control of how that next stage happens.”
Duong wrote poignantly about end of life issues in a 2016 essay in the Huffington Post. He says the coronavirus pandemic, in which fatalities are heavily weighted toward the oldest patients, is casting our ambivalence over the topic in sharp relief.
He related the story of an elderly patient who lived in a nursing home and arrived recently at the hospital emergency department critically ill with COVID-19. She had multiple underlying conditions, but wound up being intubated and put on a ventilator in the emergency room. Her prospects for survival were very low.
After she was moved to the ICU, where he was working an overnight shift, Duong had a difficult telephone conversation with her family, explaining that without any advanced directive, she would be treated as a “full code,” meaning providers would do everything to keep her alive, including manual chest compressions if her heart stopped. He explained that could very likely result in fractured ribs and considerable pain, and he very much doubted she would ever leave the hospital even if her heart were restarted.
He said it was a troubling conversation for her family, not just because she was so sick, but because they said they never would want her to go through that kind of drastic — and almost certainly futile — intervention.
A study last week in the Journal of the American Medical Association added to the growing literature on the low survival rate of critically ill COVID-19 patients who require ventilators. Less than 20 percent of those on ventilators survived in the report from a dozen New York City area hospitals, and the figure was much lower for those over 65. There were limitations to the analysis and so overall ventilator survival may end up being higher. Meanwhile, the Globe reported over the weekend on the enormous long-term cognitive deficits that can come from a lengthy period of time on a ventilator.
In cases where there are not advanced directives, Duong said, the conversations with family members — especially now, where they are all by phone with busy ICU providers — are extremely difficult. They add to health providers’ stress, but, more significantly, he said, family members who must make life-or-death decisions under those circumstances suffer from guilt and long-term forms of post-traumatic stress.
The Affordable Care Act included a provision providing Medicare reimbursement for clinical visits to discuss end-of-life directives with patients. Duong tries to have those conversations with his older patients, and said they often end up being very positive.
“It was kind of like a weight being lifted. And after that conversation, after it was documented,” he said of patients’ directives, “they could breathe.”