Earlier this week, a 30-year-old patient with COVID-19 passed away on a ventilator. He hadn’t laid out his end-of-life wishes ― what in the medical field are called advance directives. His father, devastated after seeing the numbers related to his condition, didn’t want any further treatment that would prolong the inevitable. His mother wanted to try everything that could possibly be done to save him. If the patient himself had been able to speak, he might have expressed what his wishes were and saved his family a heartbreaking conflict.
But he hadn’t planned to die.
This tragic situation is all too common, a result of families failing to discuss emergencies and end-of-life wishes ahead of time. It’s especially stressful to make this kind of decision when the stakes are high, as they often are now amid the coronavirus pandemic. This is why it’s important to understand end-of-life treatment options and to make choices before a crisis occurs. Nobody wants to imagine the worst, but the worst is a callous reality.
Out of the 55 patients on my COVID-19 unit in metro Detroit, only one had an advance care planning document. That patient was nonverbal after having a stroke at the age of 54. I phoned his sister, his designated legal guardian, and she read his advance care plan to me. “Doctor, tell him I love him,” she said. It was comforting to know that this patient had a designated advocate.
When I asked another patient about her advance directive, she laughed nervously and asked, “Is this a bad omen?” She was on four liters of oxygen, breathing heavily, but stable. She thought the conversation was taking place because she wasn’t going to make it.
Another gentleman told me, “I’m 62 years old and I have a lot more living to do!” His eyes were glassed over from his high fever and his hands clutched his chest as he tried not to cough. He was afraid that his age would prevent him from obtaining lifesaving measures, especially as some have suggested that older people are less worthy of being saved or even should be willing to die to preserve the American economy.
During my last several night shifts, I continued talking to patients about advance directives. “Do you want to be resuscitated including being on a ventilator, having electric shock applied to your chest and chest compressions that can break your ribs?” I asked. “Would you want a feeding tube?” “If you were unable to make medical decisions, who do you want to make those decisions for you?”
These questions aren’t easy to answer, especially when you are already sick and terrified in a lonely hospital bed.
“It’s especially stressful to make this kind of decision when the stakes are high, as they often are now. ... This is why it’s important to understand end-of-life treatment options and to make choices before a crisis occurs. Nobody wants to imagine the worst, but the worst is a callous reality.”
“I don’t know what he would want ― making this decision for him is too stressful,” the sister of one 37-year-old patient said tearfully. This patient didn’t have advance directives in place. His sister now had the emotional burden of deciding his care. She too was fighting COVID-19 but from home. Her brother was on a ventilator, unable to communicate. To say it’s an overwhelming situation to be in is an understatement.
As often as we address advance directives for others, many of us in health care have not thought of our own mortality. I hadn’t. Too often, this conversation is saved for a Medicare wellness visit with an outpatient doctor at the age of 65. A review of studies from 2011 to 2016, conducted by researchers at the University of Pennsylvania, found that only about one-third of American adults had advance directives.
But this is a talk everyone should have, not only at the magic age of 65. In my COVID-19 unit, patients have ranged from age 18 to 103. It’s doubtful the 18-year-old had thought much about her mortality prior to this.
So while we are social distancing in our homes, it’s time to have that conversation that most of us have avoided ― or didn’t even know we needed to have. Make an end-of-life plan, write it down, and have it available to discuss with your doctor. Even better, reach out to a lawyer and learn how to make your wishes legally sound so if there is any kind of dispute between family members, there will be a clear path forward.
Recently, for the first time, I picked an advocate for myself, thought about my resuscitation wishes and even considered my own funeral. It wasn’t easy but it was important ― both for my own good and for the emotional well-being of my family.
Instead of guilt-ridden regretful thoughts ― “I wish I knew what he would’ve wanted” ― we all have the power to know our family’s wishes now. Talking about death is horribly uncomfortable, but perhaps this pandemic is the harsh nudge we need. Discussing advance directives prior to getting ill can save a lot of emotional pain and help to lessen the fears that surround death.
If you won’t do it for you, do it for your family. It will lessen their burden when and if, God forbid, you fall sick.
Dr. Asha Shajahan is a primary care physician in metro Detroit who is treating inpatient and outpatient COVID-19 patients as well as homeless people who may have the virus. She is a Media and Medicine fellow at Harvard University.
CORRECTION: An earlier version of this post mischaracterized a study of advance directives and its results as they related to people in nursing homes.
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