As healthcare professionals across America grapple with or prepare for a surge of COVID-19 cases, ICU placements, and deaths, many are emphasizing the importance of advance care planning to help people clarify their medical wishes and values.
Advance care planning encourages us to think about what kind of medical care we would want if we were too sick to express our wishes, while advance directives are a tool used to document certain healthcare decisions.
On April 16, National Healthcare Decisions Day, it is worth asking how the COVID-19 pandemic has reinforced or changed our ideas about advance care planning. Experts say it has created unique opportunities for people to talk about difficult topics like the possibility of a catastrophic illness.
“This year’s National Healthcare Decisions Day may be the most important one we’ve ever had,” said Susan Enguidanos, PhD, a palliative care researcher and associate professor at the University of Southern California Leonard Davis School of Gerontology. “Many of us have more time on our hands as we are sheltering at home. You can take a little time, have the conversation with your loved ones, and talk about worst-case scenarios.”
Trajectory of Illness in At-Risk Patients
There is now a familiar trajectory for COVID-19 patients who are elderly, frail, or have underlying chronic conditions and report to the hospital with difficulty breathing and severe fatigue. If their lungs continue to deteriorate, they may progress to the ICU, and perhaps be placed on a ventilator.
In an effort to limit the spread of disease, these patients are often separated from their loved ones. Amid the hospital’s high-stress response, there may not be time to consider a comfort-care-only alternative to ventilators.
Experience to date says the majority of those with severe COVID infection who are placed on a ventilator aren’t going to come off the treatment or return home, said Enguidanos. Even those who do come off a ventilator may still experience serious complications.
“Once they’re on a ventilator, the option of dying at home is off the table,” she said. “A lot of the customary vagueness of advance care planning is gone. We know the course and the direction of the disease.”
Make Choices Known Before Illness Strikes
If dying at home is important to people, or if they would rather not end up on a ventilator with a high likelihood of a bad outcome, it is important to make that clear before the crisis happens.
That means naming a healthcare proxy who they trust and who would support their values; explaining those values to their loved ones; and perhaps completing an advance directive specific to COVID-19.
“If you already have an advance directive, pull it out and revisit it,” Enguidanos said. Write (and date and witness) additional information with specific choices related COVID-19, or do a new document.
“If you’re already in a situation where your health is declining, and you’ve made choices about what you don’t want—such as being on a ventilator—this may be your only chance to make those choices stick,” Enguidanos said.
It may mean insisting on staying at home, if possible, despite labored breathing or shortness of breath. Hospice and palliative care services are experienced in providing care in the home to patients with COPD (chronic obstructive pulmonary disease) and managing somewhat similar symptoms.
“So hospice is a good option for patients with COVID-19 who want to stay at home,” Enguidanos added.