"Is she dying?"

I recently read an article by Atul Gawande in The New Yorker entitled "Letting Go." Other than being a beautiful and heart-wrenching compilation of stories about one of modern medicine's true failures, it brought to mind a fascinating concept...

"Is she dying?"

The implications of that question in conjunction with an idea I recently read from a fellow resident suddenly make me realize that we are thrusting a decision on suffering and uninformed families that we are not prepared to deal with ourselves...

Before this realization, I don't think I ever understood the complexity of what we are asking from the families of our terminal ICU patients...

It seems like we get to a point - as health care providers - when suddenly we all agree that a patient is dying.. The tragedy of the timing is that, once we get to a point at which we agree that the person will die, it is beyond the point at which the patient has anything at all to do with it..

I often think back to this patient that I failed to offer that choice to as a 2nd year resident on my MICU rotation... It still haunts me to this day what I personally put that woman through.

During residency, I have tended to have "front-loaded" schedules, which means that I am very busy in the summer and early fall, but then my schedule tapers off (just in time for ski season...) I happen to be at this particular breaking point of my final year of residency... What that means, in human terms, is that these have been the times in residency when I have been on the edge of falling, or jumping off, the edge; letting go of the bumper in a speeding vehicle; driving off the cliff; well, you get the idea. My MICU rotation fell on the "tail-end" of the front-load a year ago. If I could just get through that month of 30+ hour shifts every 3 nights in the 3rd ring of Hell on Earth... If I could just make it through, I had a vacation waiting for me.

Like a light at the end of a tunnel.

But I buried myself in the rotation. I found myself even turning backward toward the dark tunnel. I was afraid of the light at the end of the tunnel because I thought it would hurt my eyes and my head too badly to see what was outside of the tunnel that had become my life.

I have a strange and sick love for intensive care medicine. The Pediatric ICU was actually my first rotation as a 3rd year medical student. And I Loved It. Sure, I saw things that scarred my soul so badly that it will never fully heal, but the intensity of connection is so deep, the ethics so complicated, the medicine so fascinating, that it almost became like heroin for me. I did a MICU elective, a NICU elective, and a PICU sub-I before leaving medical school.

I took care of a severe cerebral palsy patient that we, as a medical system, had kept alive and suffering for over 12 years. He was a "frequent flier" to our PICU and everyone knew which resistant organisms he was harboring, where his pressure ulcers were invading into his bone, and what his feeding regimen was through his percutaneous tube.

Success.

I also took care of a 7 year old girl who was diagnosed with an inoperable brain tumor after developing acute and severe headaches.. then we operated on her. Put in a VP shunt. And then she never got extubated. She died in the PICU weeks later.

Heroic Measures.

And I experienced countless more of these scenarios.

But it was strangely satisfying. I learned to think about patient's "by system," feeding my innate Obsessive Compulsive Disorder. It was addictive.... And the further you bury yourself into the job, the farther you space yourself from the patient.

But never mind all that. It's so satisfying to have tests and procedures at your fingertips that directly determine the mortality of a patient. You explain things to families, as simplistically as you can, about things that they will never have the slightest understanding. You make decisions based on "what families want," but their decisions are the the precise decisions you planted into the freshly turned soil of their distressed minds.

Power Trip.

I know that comes off as disgustingly condescending, but It's not a matter of the family's level of intelligence, education level, or even extent of their medical experience. I've seen it over and over. When someone you know becomes an ICU patient, all of that knowledge and experience falls away and comes down to this: someone you love is in the ICU, suffering, and you want them to get better. Or if not get better, feel better. It all depends on who their doctor is and the way things are explained to them.

Absolute Trust.

Anyway, so back to my MICU patient in residency. She was my first ICU admission of the rotation, my first call shift. I was already starting to get my MICU high... Therefore, I was surprised and sort of disappointed to stumble by her room in the ED - no attention was being given to this patient. I pushed the curtain aside and was greeted by a morbidly obese woman in her late 40s, sitting comfortably and pleasantly in her special bed reserved for the morbidly obese.. She had a wide and largely toothless grin and the distinct smell people develop when they are past a tipping point of being able to clean all of their surface area..

I immediately thought with the hautiness that comes with each specialty - even if you're only rotating with them - "seriously? MICU? this patient's not sick enough for OUR MICU." But regardless, that decision was about 50 steps away from me as a rotating family med resident... I got started on her admission.

Apparently, she was "found down" at home alone, septic and in rhabdo with a necrotic looking skin wound that developed where she had been laying for who knows how long. No one had any idea why she was down, including herself. She was impressive on paper, easily meeting sepsis criteria, but in person was mentating and looked as comfortable as could be.. I say "mentating," but she was significantly impaired in that realm.. She had this horrible, high-pitched voice that quickly earned the reputation of "fraggle-rock" in the MICU. Looking into her eyes was like staring into a blank abyss. I still don't know what her underlying mental disability was, but suffice to say there was one.

I sat there beside her bed and gathered as much history as I could, concentrating on not vomiting because of the overwhelming stench.. As I listened to her shrieking voice, I discretely added a line on the admit orders "please bathe patient."

After I finished, I paged my resident. We staffed her, and at the end he asked me what her code status was.. I realized with shock that I forgot to ask her! I always ask code status, primarily because it is my own personal biggest fear in the world to be "resuscitated" from a cardiopulmonary arrest. But I had forgotten. Maybe because I was so distracted by my sensory repulsion, maybe because I was unimpressed by how sick she looked and I didn't think it would become an issue after we hydrated her and loaded her up with antibiotics.. Not sure, but I forgot. I promised I would find out.

Unfortunately, the way things went, I ended up getting another couple of admissions and followed up on my checklist boxes and forgot. I left the hospital post-call and didn't come back until the next morning. I was shocked to find that she had been intubated and sedated after a code. The MICU team resuscitated her because her wishes were unknown. And she stayed that way for weeks, suffering through every MICU complication possible before we finally withdrew care, moved her "upstairs" to a room by herself with tele leads on her to alert the nurses of her time of death. She died 20 hours later.

Throughout her hospital course, her nurse and I became preoccupied and obsessed with finding out what she might want under these circumstances. Her nurse, because she was a strong patient advocate who had been working in the ICU for 30-something years, and me, because I had failed to give this person the opportunity to simply state what she would want when she had the opportunity to do so..

We ended up tracking down her father, a demented nursing home patient living across the country. His nurse told us that he was the only one still living in the family as far as she knew. We found a "friend," who we gathered must have been some type of boyfriend.. He was also significantly cognitively impaired and had no idea what her wishes might be under the circumstances. He kept asking me, "Is she dying?"

I would avoid looking over at her -- uncomfortably stare at the ground or at the tele monitor -- and fight back my tears and anger at myself. I'd tell him, "Well, no one ever knows when a person will die. I have a problem list and plan by system for everything that is going on with her, and she might survive this. But I don't know." And he'd look back at me with this puzzled, blank stare.. Not understanding what I was trying to tell him. Because, frankly, I wasn't SAYING what I was trying to tell him... Which was, "yes, she is dying."

I realized it one morning on rounds.. Death rounds.

Assessment: 50yo F with altered mental status secondary to watershed infarcts and encephalopathy, respiratory failure and intubated with left lower lung collapse, ITP with giant hematoma in her L thigh, anemia/thrombocytopenia, severe sepsis with persistent fevers, worsening renal failure with new hyperkalemia, Afib rates in 180s, and no changes in neuro status in about 1.5 weeks, morbid obesity, diffuse R-sided skin breakdown with necrotic eschar. Also, no family has been around to see her."

Plan (by system)......and my resident interrupted: "She's dying." And I take suddenly take a step back, and realize how true that is...

I think we are afraid to say it. Because we have all seen patients recover, and we don't know which ones they will be. In fact, after this experience, I have had that conversation with families.. I say, "Yes, I think she is dying." And I have been wrong sometimes. Sometimes, they make a miraculous *recovery* - by which I mean, they continue living. But life after an ICU admission for a sick patient is always a step down. They have one more notch of problems added to their computerized problem list. They go up to rehab or out to a SNF until they develop some new reason to come back to the hospital or ICU.

I'm not talking about healthy patients, and the advent of technology so wonderful that a healthy patient who develops a freak pneumonia or sepsis from a bursting appendix or gall bladder can be saved to go on to their previous lives. I'm talking about patients whom we are not allowing to die, extending their death in such a cruel and torturing fashion. And believe me, this is much more common.

"Gomers are human beings who have lost what goes into being human beings. They want to die, and we will not let them... They hurt us, we hurt them.

"The main source of illness in this world is the doctor's own illness:
his compulsion to try to cure and his fraudulent belief that he can...
It ain't easy to do nothing... So maybe we do make diagnoses, big
deal. We hardly ever cure.... We cure ourselves, and that's it."

-House of God, Samuel Shem

Ethics is a slippery slope, though, which is why we have run into this wall. No one wants to decide what is right and what is wrong. Because no one really knows. And it is different for each individual person. Abortion. Stem cell research. Death. When is it OK and when is it wrong?

I think our only solution at this point is to determine what is right for an individual person. And that person has a right to be involved in that decision. In other words, the patient I described above whom I denied that decision to by my neglect. Like me, she may not have known what the sequelae of her hospitalization in the ICU would entail, she may not have understood the extent of suffering that was to come, or she may have wanted to fight with every weapon until the very end. I will never know. Because I did not ask her.

I just read an article called "Letting Go," in which a palliative care doc describes a conversation about end-of-life wishes with her father.

"She told him, “ ‘I need to understand how much you’re willing to go through to have a shot at being alive and what level of being alive is tolerable to you.’

We had this quite agonizing conversation where he said—and this totally shocked me—‘Well, if I’m able to eat chocolate ice cream and watch football on TV, then I’m willing to stay alive. I’m willing to go through a lot of pain if I have a shot at that.’"

-Letting Go, Atul Gawande

People we know very well might have answers to that question that truly shock us. Which means, more than ever, that it is a conversation worth having. Sooner rather than later.

-----------------------------------------------------------------------------------------------------------

"He would not recover and yet I could keep him alive for a long time...."

-House of God, Samuel Shem