Snow was falling. He sat wrapped in a blanket on the edge of the couch, watching intently out the window. Large flurries lazily made their way down from gray skies. In North Carolina, this was a rare sight.
I stood next to his husband. His body had a musty, sick smell of unwashed hair and urine. His bloated and pale body was littered with tape and tubing. Half his head was shaved, and he had a drain protruding from his scalp. It sunk into the depths of his skull, pulling out the fluid in his brain, drop-by-drop. Large round pupils stared blankly back at me when I pulled back his eyelids, stubbornly refusing to constrict when I shined a light. His arms and legs were covered in green and blue bruises from when we pinched him every hour in vain to see if he would move a muscle. He didn’t. He was a corpse with a beating heart.
“It’s beautiful, isn’t?” I called over to the patient’s husband. He was still watching snowflakes.
“Mhhmmm,” he nodded absentmindedly, never tearing his eyes away from the snow-globe scene outside.
This was Day 20. As far as we could tell, the patient was gone at Day One. He had suffered a massive hypertensive hemorrhage. Blood had filled every free space in his brain, and the swelling encroached oppressively on gray and white matter alike.
We lost brain stem reflexes by Day Two, but the patient’s husband insisted we push on. Three weeks. Three weeks of neuro checks on-the-hour, an intrusive routine in which we gag, pinch, and prod the patient to induce a reaction. Liters upon liters of fluid had been pumped through a nonresponsive body and countless needles had been used to violate veins for samples to send to the lab. He had endured at least half-a-dozen CT or MRI scans in addition to daily X-rays. There had been three weeks of brutal suffering. I felt guilty. I was an accomplice to this poor man’s torture.
I could not blame his husband for keeping him alive. He was in love and devastated. He was only doing what he thought his partner would have wanted. Even after multiple family discussions and meetings, we could not convince them that he would not wake up. We were instructed to keep up this level of care until his body failed completely.
One problem with medicine today, is that it is too good. People live longer than ever before, and many patients are able to recover from deadly illnesses the world knew nothing about when my grandparents were children. Doctors can keep people alive in ways once thought impossible.
We can sustain a pumping heart and fill lungs with air indefinitely. Kidney function can now be replaced by humming dialysis carts and stomachs fed through surgically implanted tubes. In the intensive care unit, this process is carried on with extreme monotony, indifferent to whether the patient is actually able to think, feel, or protest. There comes a time for every person when his or her identity is gone, and the quality of life should be valued more than the mere presence of it.
This is a common viewpoint for many in the health care community, but it seems to be in opposition to the beliefs held by the general public. Families are suddenly forced to make weighty decisions for loved ones, often erring on the side of caution. “Do everything you can for him, Doc” is a phrase with far-reaching implications. Doctors, nurses and others who devote their lives to taking care of very sick patients see it happen all the time: A patient’s time has come, but the family just can’t let go.
Studies show there is a dichotomy between how health care workers view end-of-life care and how the rest of the world does. To illustrate this, a recent report published in the Journal of the American Medical Association (JAMA) describes data that was obtained from death records from Massachusetts, Michigan, Utah and Vermont from 2004 to 2011.
It revealed that compared with the general population, doctors were less likely to die in a hospital, less likely to undergo surgery at the end of their lives, and less likely to be admitted to an intensive care unit. Similarly, a study published in Plos One by doctors at Stanford University in 2014 found 88.3% of 1,081 physicians surveyed for the study designated “do not resuscitate” as their advanced directive.
It is a painful truth that doctors are often asked to continue the kind of intensive measures they would never wish for themselves or a loved one. For those in the health care community, death is not an abstraction, but a daily reality. We know how precious life is, and we understand how difficult it is to watch family members lose people they love. But we also know in modern medicine, dying with dignity is a luxury more people should enjoy.