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Earlier this week, a 30-year-old COVID-19 patient died while on a ventilator. He had not stated his end-of-life wishes – what we call, in the medical field, levels of care.
Her father, devastated after seeing the costs associated with his condition, did not want additional treatment that would prolong the inevitable. His mother wanted to try everything that could be done to save him. If the patient himself had been able to speak, he could have expressed his wishes and saved his family from a heartbreaking conflict.
But he hadn’t planned on dying.
This tragic situation is far too common, because families do not discuss intentions in an emergency or at the end of life in advance. It is particularly stressful to make this kind of decision when the stakes are high, which is often the case in the current context of a pandemic. This is why it is important to understand the treatment options at the end of life and to make choices before a crisis occurs. No one wants to imagine the worst, but the worst is a harsh reality.
Of the 55 patients in my COVID-19 unit in the heart of Detroit, only one had an end-of-life care planning document. This patient no longer spoke after having a stroke at the age of 54. I phoned her sister, her designated sponsor, and she read me her early care plan. “Doctor, tell him I love him,” she said. It was comforting to know that this patient had a designated spokesperson.
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When I asked another patient about her wishes for levels of care, she laughed nervously and asked, “Is this a bad omen?” She was on four liters of oxygen, breathing heavily, but was stable. She thought the conversation was taking place because she was not going to go through this ordeal.
Another man said to me, “I’m 62 and I still have a lot to do!” His eyes were glassy from his high fever and his hands were clenching his chest as he tried not to cough. He feared his age would prevent him from getting care to keep him alive, especially since some have suggested that the elderly are less worthy of being saved or even should be ready to die to preserve the economy.
During my last night shifts, I continued to speak to patients about levels of care. “Do you want to be resuscitated, on a ventilator, receive electric shocks to your chest and chest compressions that can break your ribs?” I asked. “Would you like a feeding tube?” If you couldn’t make medical decisions, who would make those decisions for you? ”
Answering these questions is not easy, especially when you are already sick, terrified and alone in a hospital bed.
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This is a discussion that everyone should have, not just from the age of 65.
“I don’t know what he would like – making this decision for him is too stressful,” said the sister of a 37-year-old patient, in tears. This patient did not establish level of care guidelines. Her sister now had to bear the emotional burden of deciding on her care. She too was fighting COVID-19, but from home. Her brother was on a ventilator, unable to communicate. To say that the situation is overwhelming is an understatement.
While we often discuss the levels of care for others, many of us in the healthcare community have not thought about our own death. I didn’t do it. Too often, this conversation takes place during a doctor’s visit from the age of 65. Studies from 2011 to 2016 by researchers at the University of Pennsylvania found that only one-third of American adults had established guidelines for levels of care.
But this is a discussion that everyone should have, not just from the age of 65. In my COVID-19 unit, the patients were between 18 and 103 years old. It would have been surprising if the 18-year-old had thought a lot about her mortality before that.
So, while we practice social distancing at home, it’s time to have that conversation that most of us have avoided – or that we didn’t even know we should have. Make an end-of-life plan, write it down, and have it nearby to discuss with your doctor. Better yet, contact a lawyer and learn how to make your wishes come true legally. In case of conflict between family members, there will be a clear path to follow.
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Talking about death is horribly uncomfortable, but maybe this pandemic is the boost we need.
Recently, for the first time, I chose a person who would be the spokesperson for my end-of-life wishes, thought about my wishes regarding resuscitation and I even thought about my own funeral. It was not easy, but it was important – both for my own well-being and that of my family.
Instead of living in regret and guilt at saying, “I wish I knew what he wanted,” we all have the power to know the wishes of our family members right now. Talking about death is horribly uncomfortable, but maybe this pandemic is the boost we need. Discussing levels of care before you get sick can save a lot of emotional pain and help ease the fears that surround death.
If you don’t do it for yourself, do it for your family. Their burden will be lightened if you are to fall ill.
This text was originally published on the HuffPost United States.
SEE ALSO: What are the four “levels of care”?
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