We’re all in a maudlin mood: we should use it to think about what really matters.
My mother almost died on her birthday. Upon learning that she was critically ill, I flew to New York from where I lived in Illinois, arriving at the hospital around 8 pm. My mother was quarantined, wearing an oxygen mask on her forehead. I moved the mask to her nose and mouth, where it belonged, and waited. Thirty minutes later, a nurse entered and told me that my mother’s blood oxygen was low, resulting in unsustainably high heart and breathing rates. She had entered the hospital with double pneumonia that turned into sepsis. She had been started on an antibiotic infusion upon her arrival.
After some searching, I found a resident who was able to answer my questions. She said that such high heart and breathing rates would eventually cause my mother to go into respiratory distress, followed by respiratory failure and death. Having seen that my mother would have been without her oxygen mask for half an hour after I arrived (when the biggest threat to her life was lack of oxygen), not knowing how long she already had been without oxygen, and wanting to give the antibiotics a chance to work, I informed the resident that I was rescinding the do-not-resuscitate order that I had authorized in her nursing home.
Who Deserves Care?
The pressure to keep the DNR in place was merciless. I told the resident, and the stream of doctors she called over to push me to keep the DNR in place, my reasons for rescinding the DNR, focusing on what I knew to be my mother’s desire to give the antibiotics an opportunity to defeat her infection. Her pre-infection quality of life was good enough that she would want to be saved. And she had an extraordinary constitution. The doctors ignored me, focusing, instead, on how unpleasant it is to see someone resuscitated and, afterward, intubated. The stonewalling continued for 20 minutes, all while the DNR remained on my mother’s chart. It became obvious that the doctors were concerned about how they would feel about resuscitating or intubating my mother. This patient, who was turning 86 in a few hours and had Alzheimer’s, was not one they deemed worth saving. Happily, I insisted.
Six hours later, my mother entered respiratory distress, was intubated, and was moved to the intensive care unit. A doctor called to inform me of the situation. (I had gone to the family home to try to sleep.) He asked whether I wanted to keep the DNR rescinded. I did. Was I sure? I was. Really? Yes, really.
It was indeed unpleasant to see my mother sedated and intubated when I arrived at the ICU, but it was great to learn that she was stable. I eventually met my mother’s attending physician, who said that allowing the antibiotics a chance to work was the right choice. I settled into my new routine of spending most of my days at the hospital. I watched and learned all that I could about her care. Her saturation stayed high, and her other vitals were good. Over the coming days, her white-blood-cell count decreased, suggesting that the antibiotics were working. So began her continuous, albeit uneven, improvement.
The waiting continued, but not without a resurgence in pressure to reinstate the DNR. First, the head nurse began not-so-subtly suggesting that no more could be done for my mother. A resident and others chimed in. Only one nurse whispered, careful to make sure that no one was within earshot, “Do what you have to do for your mother.”
A week later, she was extubated. It was a joy to see her with an ear-to-ear smile. She was awake and alive. Remarkably, she was speaking English despite two years earlier having lost the language of her emigrant-home to dementia. She was moved to a regular room and continued her unpredictable improvement. I began splitting my time between my mother in New York and wife and children in Illinois.
One 3am in Illinois, I received a call from a resident. Your mother is in bad shape. Really bad shape. There’s water in her lungs. Do you want to reinstate the DNR? Disoriented, but managing to recall what I learned about her care, I asked about her vitals. She’s in bad shape. Very bad shape. Do you want the DNR? Could the water in her lungs be treated with a diuretic, and her low saturation with nasal oxygen, while the diuretics are working? She can’t breathe. She’s in bad shape. The DNR… The pressure had turned into bullying. I held my own until the night attending physician took notice, taking the phone from the resident. I explained my understanding of the situation. He apologized for the resident and agreed that diuretics combined with oxygen was the best course. The condition cleared within days.
The following week, another resident called to say that hospital staff were having difficulty inserting a fresh intravenous cannula into my mother’s arm. Do you want to keep the DNR rescinded? We will have to poke her a lot to get a new IV in. Are you asking me to reinstate the DNR because of difficulties replacing her IV? It means poking her arm a lot. The DNR might be a good idea. I replied that I knew that some nurses had a knack for inserting cannulas, and that I was certain that someone in the hospital could insert a new one. But she would be poked a lot. Do you want the DNR? Put in the IV! Bullying had progressed to nearly deranged monomania.
She was discharged after four weeks in the hospital. She had many happy moments over the next three years. She made new friends and gave others joy. She met her third grandchild and saw her first two grandchildren several more times.
My mother caught another infection last year. Antibiotics were started, but she was not eating. She had no pneumonia or other conditions, but lack of nutrition was causing her to decline. Her doctor eventually said that feeding her via a thin tube in a hospital was her “only chance.” We agreed, on a Saturday night, that she be taken in. I was on a work trip and relieved that she would receive nutrition while, once again, the antibiotics were given a chance to work. I called the hospital Monday afternoon after returning home. To my horror, I learned that she had not been fed, despite receiving nutrition being the only reason she had been admitted to the hospital and her only chance at survival. The reason: To avoid complications with other conditions…which her doctor confirmed, before and after, were absent. I called her doctor, who called the hospital and ordered that she be fed. It was too late.
Imposing the DNR
In the COVID-19 age—amidst much bravery and heroism—the bullying continues. One nurse described the situation in a New York City hospital as the “wild, wild west,” adding that individuals were being bullied into authorizing DNRs. Worse, no attempts were being made to save older patients found not breathing. Life-saving measures were prioritized for the young, despite their being substantially more likely to survive a COVID-19 infection on their own. Dr. Deborah Birx, White House Coronavirus Response Coordinator and Global AIDS Coordinator for Presidents Barack Obama and Donald Trump, said that there was no need for these kinds of measures.
Nevertheless, at least two New York-area hospitals have already implemented policies under which DNRs could be imposed en masse upon COVID-19 patients against their and their families’ wishes. A physician at Brooklyn Methodist said that, in all but rare cases, “we are pretty much doing nothing” for dying patients. New York’s Elmhurst Hospital had such a policy in place for three days before rescinding it. The hospital would not say how many patients were allowed to die during that time. Hospitals and hospital systems nationwide have granted doctors unilateral authority not to resuscitate COVID-19 patients. Others are considering such measures.
At hospitals sticking with traditional policies, some doctors are informally allowing patients to die, while some are doing so openly. An NYU bioethics professor said that “no prohibition, policies or laws” will change doctors’ behavior. Young children have not been immune from involuntary DNR placement, with heart-wrenching results.
To make matters worse, as I discovered firsthand, patients under DNR orders often receive substandard care even before the life-saving decision arises. A DNR order means only that cardiopulmonary resuscitation should not be administered to someone undergoing cardiac or respiratory arrest. Yet “many health care providers often erroneously understand DNR status to imply that a patient is dying and should not undergo other life-saving interventions.” The deficiencies in care by both physicians and nurses range from DNR patients not being transferred to ICUs when needed to routine tests, antibiotics, blood products being withheld. Yet, considering that lives are at stake, physician ability to predict patient resuscitation preferences is, as one rare study discussing the topic put it, “moderately better than chance.”
Human Dignity versus Quality of Life
Today’s justification for this behavior is to protect healthcare providers from COVID-19. But a smaller proportion of healthcare workers are becoming infected than are members of the public, despite their patient contact. This at a time when the true proportion of the population that contracts the virus, with a great many infected individuals showing no symptoms, is still unknown, but potentially ten or more times higher than the number of detected cases. Under these circumstances, it is imperative to err on the side of life. All lives matter.
But repeated value-laden statements by decision makers about “quality of life,” and not uncommon experiences like my mother’s, suggest that this pandemic has merely given some caregivers the opportunity to impose upon others their beliefs and assumptions about which lives are truly worth living.
CPR does not guarantee survival, but it increases one’s chances from zero to as much as 17 percent. That is far from trivial. The role of medical professionals is to inform. It is not to make unilateral decisions driven by their value judgments about patients’ post-resuscitation lives. Such decisions are for patients and families to make based on their unique knowledge of their and their loved ones’ wishes and circumstances. The science of medicine is more advanced than ever. The “art” of medicine, to quote the Hippocratic Oath, is in disrepair. In taking the Oath, doctors promise to heal to the best of their abilities, avoid “therapeutic nihilism,” and “Above all… not play at God.”