Sometimes in an ICU, a patient transforms in front of your eyes from a human being undergoing aggressive treatment with hope for recovery, to a human body kept marginally alive by machines and medications in a futile prolongation of the death process. As a critical care doctor, my role is to judge when that transition has taken place and explain this morbid situation to the patient’s family and loved ones. These conversations, for me, are the most difficult part of practicing medicine- not because I have difficulty explaining or talking with families. I don’t. But because with each one of these difficult conversations, I unintentionally sacrifice a little something of myself- an energy, a personal vitality. When you are forced to break bad news, it can drain you. When you do it every day, it can burn you out.
Giving the news…
I usually gather the family in a small conference room, as the patient is usually too sick to participate in a conversation. Often in an ICU setting when treatment has failed and complications mount, it becomes clear the patient has almost no chance meaningful survival and will soon die no matter what we do. It’s just a question of when. We talk about comfort care– changing our primary goal of treatment from medical recovery to patient comfort. That means stopping invasive tests, turning off all medications and machines prolonging the patient’s life, and allowing them to die naturally.
People react to the impending death of a loved one in very different ways, impacted by culture, personality, and the unique relationship with the dying loved one. In my experience, hearing the news that someone is going to die evokes a distinctly different emotion than hearing that someone has already died. There is a lack of finality before death has actually occurred. Because a heart still beats, albeit its fade inevitable, there is a moment for pause and contemplation of a life before it is officially over. During that contemplation, the full history of the relationship erupts to the surface- the good and the bad. Regrets have not yet been fully realized. It can get pretty emotional. The full kaleidoscope of human emotion are projected during these final ICU family meetings.
Turning off the support…
I first make sure to ensure each patient is comfortable for their final moment by administering pain and anti-anxiety medications. After the family has said their goodbyes and inform me they are ready, I enter the room and turn off all the machines myself.
After the medications are turned off and life support disconnected, I exit the room and observe my patient’s vital signs, now often precipitously declining, on a monitor at the nursing station. To witness the blood pressure drop and heart rhythm dwindle as death envelopes the human body is the ultimate interaction of the scientific and the spiritual. What exactly is the moment of death? Is it when the blood pressure is zero or when the electrical rhythm of the heart stops firing? If you watch enough people die in this situation, you realize that there is a brief moment where as physician you would probably be technically correct calling them either alive or dead. There is a measurable electrical activity of the heart, but no corresponding pulse or blood pressure. During this moment I am speaking of, there can be no medical resuscitation. It is past the point of no return. The organs and cells no longer function, but a bioelectrical current continues to flow through the body. It is like the person is 99.9% dead, but once last memory of vitality lingers a few seconds longer, until it too escapes into the abyss. Maybe it’s the soul taking one last instant to say goodbye to its corporeal self? This transient state of being, with no definitive scientific nor philosophical definition, is a moment only measured in an ICU after withdrawing care.
There comes a point when I decide they are in fact dead and inform the family their loved on has passed. It’s often the only time I am overtly thanked in the intensive care unit.
These challenging moments can make critical care medicine a wondrous peephole into mortality and meaning in life itself. But there is also a cost.
There is a concept known as compassion fatigue. It can develop in doctors, nurses, social workers, first responders, and even lawyers. When a person is exposed to so much suffering and death, over time they become indifferent to it. They can even develop depression, anxiety, sleeplessness, hopelessness, and apathy. I’m sure practitioners exhibiting signs of compassion fatigue often are perceived as heartless. Imagine a nurse or doctor not exhibiting sympathy when your loved one is on death’s door. Maybe they are preoccupied with another trivial task and brush off your concerns. How could they do such a thing? Don’t they fully comprehend how difficult of a time this is? For you, it is one of the most profound and impactful experiences of your life; for them it may be a task they need to complete before they can eat their lunch.
My own compassion fatigue
I tangibly recognized compassion fatigue in myself just a few weeks ago. A very sick patient went into cardiac arrest in the ICU. We coded him for ten minutes and was somehow able to get a pulse back. When he briefly stabilized, there were clinical signs that he may have bled in his brain, so we sent him urgently for a CT scan of his head. While he was in radiology, his adult daughter returned to an empty room. I gently approached her, took a deep breath, and started to explain that her father’s heart stopped. Instantaneously, she began wailing and screaming, dropping to her knees in the middle of the the ICU room. I didn’t even get to finish my sentence to let her know he was still alive. She was howling, crying, and expressing her emotional pain by literally rolling around on the ground. Now you may ask what was going through my mind as the nurse retrieved her a chair to sit in and provided tissues to wipe her tears? Was it “poor girl- what can I do to comfort her at this moment?” Or was I deeply affected by her suffering in front of my eyes? Honestly, not really. I was thinking to myself “oh crap- it is going to be tough to get out of this room without seeming like an uncaring jerk.” Where was my sympathy? Had I exhausted it on countless patient’s and families over the years? I intellectually felt terrible for this poor girl. I just didn’t feel a corresponding emotion. I was an actor playing a necessary part, wearing a concerned face and politely answering questions as anyone might expect. I’m sure I came off as a caring person- but if they awarded doctors Oscars for “Best Bedside Performances”, I would have been nominated. My concern was all external. I actually felt bad that I didn’t feel bad- as usually I genuinely do. The reality is, I didn’t have the emotional reserve to spend it at that time.
Medicine’s not so secret defense mechanism
So how do those of us who work around such depressing situations get through the day? We prescribe ourselves what has been termed the best medicine: laughter. We joke about it all. But I am not talking about witty puns and lighthearted quips. I am talking about a dark and irreverent humor. A humor that if it was publicly exposed to the non-medical world could not easily be defended. It is often without a doubt completely and totally wrong. But this inappropriate humor, albeit seemingly negative and disrespectful to patients and families, serves a very important and necessary function. Humor is the defense mechanism of compassion fatigue.
Is this funny or wrong? Or both?
When I was a third year medical student at the University of Michigan I rotated on the neurology service. Neurology-especially in the inpatient hospital setting can be a rather depressing speciality. People are skillfully diagnosed, but oftentimes there is no treatment available for that diagnosis. Intellectually, the pathology can be very interesting, but emotionally the hopelessness can be overwhelming.
One morning during rounds, we started with a patient who suffered devastating stroke forever robbing him of his language comprehension. Then we visited a women who had weeks to live due to her newly diagnosed metastatic brain tumor. And finally we got to reveal to a patient that his tests indicated he had an irreversible degenerative disease. We had little to offer except our sympathy.
At the tail end of this rough morning, the team approached the room of a markedly obese man who had suffered a clinically inconsequential stroke. He was the first patient of the day who was going to recover from his illness. We reviewed his case in the hallway and opened his hospital room door to examine him as a group. As we crossed the threshold, we discovered the massive man was in the midst of a sponge bath he was clearly enjoying, sprawled out on the bed. We all got a full view of everything this man had to offer, just hanging out for all to see. It was not a pretty sight. The neurology attending physician stopped our team of four residents and medical students from entering the room, and and we politely excused ourselves, returning to the hallway. No one mentioned the awkwardness we all just collectively witnessed.
The attending then grabbed this patient’s chart and began to write his daily progress note. Under the physical exam section I saw he scribbled “BLOKFD.” As the ever curious medical student, assuming it was a obscure neurological term, I asked what it stood for. He looked me straight in the eye and without an ounce of sarcasm professionally stated: “Balls Look OK From Door.” After the instant it took for those words to travel from our ears to our brain and the extra moment to comprehend just how ridiculous it was to write this profane notation in a legal document, the whole team began to cry from laughter. But God did we need a big laugh. It re-energized us all after the draining moribund hopelessness of the patients we had visited earlier in the morning. Was our laughter at this poor naked fat guy’s expense? Yes it was. I’m sure if his family member had overheard our conversation, they would not be so forgiving. But in order to make it through our difficult day exuding compassion, we needed to privately take some back.
Humor as a buffer
Making jokes about patients and their families is the clinician’s buffer to their own personal, often unstated, distress. But make no mistake, it is absolutely possible to care deeply about a person and respect them as a human being while simultaneously mocking their whole terrible situation. If you manage to perforate your bowel after you ram a dildo up your butt in an autoerotic act gone horribly wrong, I can 100% guarantee the entire staff will be joking about your situation (without your name) as the story goes viral through the hospital. For years to come, doctors will bust out the story of your predicament at cocktail hours when other guests request to hear any crazy hospital adventures. In fact there is high probability your X-ray will become someone’s iPhone screensaver. But as these same people joke behind your back, they will just as likely do their absolute best to treat you medically with genuine authentic compassion for what you have gotten yourself into (or rather what you got into yourself).
Back to the ICU
Only once was I completely alone with my patient when I turned the machines off. The family did not want to be in the room and the nurse asked to stay outside. He was completely unresponsive and I knew this guy would die within minutes after I turned everything off. So I stayed and held this guys hand. I didn’t know him. I can’t remember his name or age or why he was in the ICU. I guess I just didn’t want him to die alone. I watched the monitor slowly morph into a flatline, witnessing his body peacefully let go of the small bit of life we had been forcing upon him. He was comfortable and for whatever reason was fated to move on- as we all will someday. I said a little prayer and wished him well, without sadness or morbidness, with my compassion fully intact. Then I went outside, ate my lunch and probably told a terribly inappropriate joke.