“For someone who went into medicine to ‘help people,’ you sure do talk about dying a lot,” my mother told me one day on our brief weekly phone call. I try to get in a phone call to my mother once a week so she knows I’m alive, surviving my intern year. I had been on medical intensive care unit (MICU) service and it had been a rough week. Being a doctor, death hovers around like an impending storm, we can only prepare ourselves for the inevitable impact. Dying is part of the vernacular, you have to be able to talk about it, extensively, respectfully and repeatedly.
Most of my first week in ICU was spent on family meetings to discuss goals of care. One of my attending physicians told me that part of critical care is explaining to families the limits of medicine. He explained, “We can keep doing things for patients. We can pound on his chest if his heart stops, we can keep this tube down his throat to help him breathe. Eventually the body will dictate when there’s nothing more we can do.”
Another physician drew a graph on a piece of paper showing the steady decline in chronic diseases, that every dip in the graph shows an acute exacerbation of congestive heart failure or COPD, but it is always on a downhill slope towards death. Another physician told me it is our responsibility to help families know when it’s time to “let their mother to go to heaven.”
Years before this, I was on the other end of the table in an ICU having similar conversations with doctors about my own grandmother. No matter how it is explained, it’s a conversation that families never want to have.
For my patient, this was her fourth admission for severe COPD exacerbation, her third time being intubated for acute on chronic respiratory failure. Her lungs were failing and this was unavoidable progressive of her chronic disease. Over the course of a few days, we met with the family several times. With numerous parties involved, they went back and forth about getting a tracheostomy. Trying to figure out their mothers’ wishes, they ruminated over and over again in tears about what they should do.
Finally, they had decided on withdrawing life support, terminal extubation. We explained that the patient may not go very quickly, that sometimes these things take time. The family gathered around while we removed the tube. Nothing happened. The family held their breath expecting sudden death like you see on TV … flatline, breathing stops then stillness. This was nothing like TV. The patient was awake, calm, even blowing kisses. Her oxygen saturation oddly improved.
The days that followed were painful. There was a mix of sadness and frustration. The family pleaded with the team to help her die quicker. “We have all said our goodbyes. All of her children, nieces, nephews and grandchildren had flown in to say goodbye. We finally all agreed to let her go,” one daughter explained to me. Having made the decision to withdraw life support, they were frankly pissed in some ways that she was still going. It made them reevaluate their decision to not get the tracheostomy. Her continuing to live seemed to destroy the closure they felt in letting her go or reassurance about not getting the procedure.
While her medical history, labs, worsening progression of her disease and dependency on mechanical ventilation indicated that it would highly unlikely that she would survive on her own, I began to question if we were wrong. In the numerous family meetings with palliative care, we discussed at length that this was the terminal progression of her disease and she would likely be ventilator-dependent the rest of her life.
Were we wrong? Was this some sort of miracle or was our medical acumen slightly off? Should we have fought harder for a tracheostomy rather than comfort care? The attending doctor had explained that it is difficult to know how much time people will have after being terminally weaned but in the end, death is imminent.
Everyone wants a timeline. Each day, they asked me several times in various ways, “When will she die?” No one is ever satisfied with vague answers or no real answer. We don’t know when exactly. We can predict and see death coming some of the time based on vital signs. The ICU nurses would tell me about the look of impending death.
One seasoned nurse explained, “You can’t quite characterize it but you just know from experience that it’s coming soon.” Sometimes people die unexpectedly, and those that you expect to die sometimes live on far past your predictions. A few days later my patient passed away peacefully in her sleep, in a private comfort care room away from the hustle and bustle of the intensive care unit with her loved ones surrounding her.
Oftentimes the most heroic measure isn’t the action hero style chest pounding, doing everything possible. This Hollywood depiction of saving lives is what I had imagined prior to starting my ICU rotation. Sometimes the most heroic measure is in supporting families and patients in coming to terms with the end of life and avoiding futile measures that will harm more than help.