Sunday, August 26, 2012

The only thing I had to do was to help Jerry and I failed

I have failed Jerry, and now I'm replaying every word I ever said in my head, over and over, the whole exercise consuming my being.

Jerry was not old. He just turned sixty, a good few decades of retirement awaiting him. Then, he was diagnosed with stage 4 esophageal cancer. It seemed that he had spent his entire life working up to that moment, only to be stolen away unjustly, by a cancer that drowned him slowly in his own oral secretions. Jerry had been in the hospital for months, battling recurrent aspiration pneumonia that caused nasty sepsis. He frequented the intensive care unit, had a feeding tube placed along with a stent in his esophagus to remedy a fistula to his trachea, a communication caused by a large tumor burden in his chest.

I met Jerry the day before he died. Jerry was in bed under a tangle of wires, breathing quickly, gasping for air with every available muscle in his chest. He was distressed, decompensating from another ravaging aspiration pneumonia, blood pressure non-existent. I was supposed to help Jerry, as a responder from the intensive care unit. The only thing I had to do was to help Jerry and I failed.

I asked for labs and a stat chest X-ray. I was told by his inpatient doctor that Jerry was full code, meaning Jerry wanted anything and everything done, including a tube down his throat and compressions that would break his ribs, interventions that were becoming more and more realistic for Jerry. I waded through a throng of nurses poking for veins and grabbed his hand. I asked for his wishes, again, wanting to make sure I knew what he wanted for himself. I asked Jerry if he would want to be intubated - he shook his head and said no, with the perplexity of a schoolboy who was offered a rotten piece of Jello that he had already refused. Jerry seemed to have given extensive thought to this piece of Jello, and after multiple rounds decided that he would not want Jello for himself.

Still, I was not sure if Jerry was thinking clearly in his severe illness. I asked if he would want his wife to make decisions for him, seeing that Jerry was already working so hard to keep himself oxygenated. He nodded, with immense fatigue, then went back to focus on his breathing, his staying alive. I found his wife, crying and beside herself. I felt cruel when I asked her what Jerry would have wanted - what a burden I placed on her. The word unfair was an understatement. How can she agree to the tube if Jerry hates it? How can she refuse the tube if it's the only thing that will keep the love of her life breathing longer?

She produced a piece of paper - Jerry's living will. It said that Jerry did not want artificial respiration, cardiopulmonary resuscitation, artificial nutrition that would prolong his life. It said so in capital letters. The last sentence read, "these decisions are made when I am sound of mind."  He signed it on February 20, 2012 - 6 months ago.

I was relieved. I thanked Jerry he made a living will. I could guide Jerry's wife through this difficult process, having an idea of what he wanted. I was angry. If Jerry coded before I found this piece of paper, I would have done everything that Jerry did not want. The covering inpatient doctor did not know why his living will was not found or discussed on admission.

Jerry's wife was broken, in despair. Her daughter asked her to keep Jerry alive while rushing in to the hospital. She pulled at her hair. She heavily sobbed. She begged me, begged the world and Jerry, not to make her choose. I sat her on a chair, hoping to provide some comfort, and told her that we would not intubate or perform chest compressions on Jerry - the medical team changed his code status to DNR/DNI. Luckily, even though Jerry was breathing quickly, his oxygen saturation was holding. For now an optimist could hope that Jerry would not require intubation. Jerry did not discuss pressors on his living will - most people do not. Pressors would keep Jerry's blood pressure up in the setting of sepsis, but a central line required to administer pressors is poked through the neck, a procedure with its own set of risks and discomfort. I talked to Jerry, his wife talked to Jerry, and we agreed that Jerry wanted pressors. Jerry came with me to the intensive care unit.

The next few hours was wrong, was when I failed Jerry. He maxed out on levophed, tiring out from tachypnea, secretions building up and drowning him. Jerry was actively dying. His daughter, now at bedside, asked about intubation. She said Jerry had been intubated before, despite his living will. I asked how, and she was not sure if the living will was discussed with his doctors then. I said I did not know where Jerry would land if he were intubated, avoiding projections with my limited experience, but I said there was a good chance that once placed, the tube would not be successfully removed. Jerry might be stuck on the ventilator - a horrible way to die for someone who specifically stated, when he was sound of mind, that he would not want to die on the tube. Jerry's wife agreed, while his daughter looked on, not saying a word, tired and holding her tongue. I told them my critical care attending was coming in - he could discuss intubation in more details with them.

By the time the attending stepped in, Jerry was out cold, no longer conscious but struggling to breathe all the same. Maybe out of experience, maybe out of comfort with aggressive medical care, maybe out of sympathy for his wife, imagining how heart-breaking it must be to watch her love drown, my attending offered intubation to the family. We can always back off, he said. It was the only tangible hope in a sea of despair and the family took it. I wondered if they took it for Jerry or for themselves, but who can fault family members, regardless of what they choose? His wife loved Jerry and wanted the best for him. She was deciding the only way she knew how, making earth-shattering choices for the first time in her life for Jerry, without Jerry.

The gamble did not pay off, for anyone. No one could know in a few hours Jerry would max out on 3 pressors, now with a breathing tube that did not do anything for him. Jerry was dead, had been dead long before the time when his heart would eventually stop. The Jerry that the world knew was dead. The-accomplished-pharmacist-who-regularly-hugs-his-wife-Jerry had left the world. The body on the hospital bed accepted breaths initiated by the ventilator, but once his heart and lungs finally gave out, chest compressions and electrical shock would not fix the sepsis within. Jerry would eventually die. He could not be saved.

And I have failed. I failed to save Jerry from the breathing tube, even though he told me clearly what to do. I failed to save his wife from the guilt that she may ruminate on, increasingly over time, wondering if she made the right choice for Jerry, and  there would be no resolutions to that doubt because we would never know what happened if Jerry was not intubated. My only hope for her was that Jerry would know every decision was made out of love, that there was no blame, that he understood and loved her all the same. In the end the sepsis overwhelmed Jerry and there were no more pressors to give. The breathing tube was never withdrawn.

Wednesday, August 22, 2012

How We Die

It was another day in the intensive care unit. The night was clean and calm, ventilators beeping their expected  melody, and the laborers of medicine went about their night shifts uneventfully, including me sitting with the obnoxious admission pager attached to my hip. The smoothness of it all shattered when the beeper started screaming - I picked up the phone and soon the emergency room physician was on the line.

"We have an old lady with potential sepsis for you - fluids are going right now," the voice said.
"What's her blood pressure?" I asked reflexively.
"80/50 and still unstable - you should come see her soon," the urgency in that voice was unmistakable.

I scoured the patient's information quickly from the chart before heading to the emergency room, as I usually do, and registered a repeated past medical history of an abdominal aneurysm that had never been fixed. Her name was Dorothy, a name that is endearing today and would have been very fashionable in the 1920's. Dorothy lived in a nursing home for the past few years, with multiple hospital admissions becoming increasingly frequent in the recent months. Her stage 4 pressure ulcer was unrelenting, undermined by severe malnutrition demonstrated by an albumin level of 1.5. Her white blood cell count was not elevated, but infected older patients do not always present with leukocytosis. From the chart I braced myself for the harsh reality I was about to encounter, knowing her chance of leaving the hospital alive was poor, and with a heavy heart went to find Dorothy.

I pulled the curtain aside as I stepped into the room and the commotion around Dorothy was jarring. The monitor was unhappy with a blood pressure of 80/50 and it made its discontent known, loudly. Nurses ran in and out, starting new intravenous access, hanging more fluids, everyone fumbling all around except Dorothy. She was in a hospital gown but the blanket had fallen by the bedside, revealing her lower naked half with a foley bag lying nearby, draining not a drop of urine. Her arms and legs were skin on bones, her face gaunt with wispy hair, all combined to make her the life-sized version of a skeletal crypt keeper from horror movies, except the only horror in that moment was in Dorothy's eyes, staring blankly at the ceiling. She was agitated, scared perhaps, confused most certainly, her arms flailing wildly for something invisible that may save her life. She moaned, yelped, then screamed a cacophony of unsettling fear and panic. I grabbed her grasping hands and soothed her, uttering something vague like it's OK - not so much to say that life was there to stay but more to acknowledge that it was perfectly normal, expected even, to be scared. I searched for a family member, someone more adept at calming Dorothy than me, but I found no one.

Then something horrible happened. Dorothy's blood pressure started plummeting right in front of our eyes, systolic down to 70, then to 50, blood surely pouring out of her aorta into abdominal compartments. It became clear that her aneurysm had ruptured, catastrophically, life literally seeping out into her abdomen. The family, informed prior of what believed to be sepsis in Dorothy, mistakenly thought that they would have time to come visit her in the morning. They were promptly called again, this time notified that Dorothy was actively dying, a surgical repair of her aneurysm unlikely to be successful considering her frail baseline. Everyone was thankful that her family decided to stop all interventions knowing they were futile. Her son said he was rushing in then hung up the phone.

But Dorothy was already dying - I knew none of her family members would make it in time. I looked at Dorothy, left in the wake of the ravenous medical efforts aiming at postponing death, and there was not an ounce of dignity left in her being. Her gown was pulled aside, revealing a stomach dirtied with gel used for the bedside ultrasound. The foley hung lifeless between her bent legs, IV kits and needles strewn around like candy wrappings, wires attached to EKG leads tethering her soul. Dorothy was no longer flailing, her body now without the necessary blood to fuel the bodily expression of the fear within. I picked up her left hand and held it, making a mental note to stop in that moment for Dorothy and witness her death, in an attempt to add what little dignity I could to this horrible chain of events. My intern looked at me, then proceeded to hold  Dorothy's other hand. Everyone else, the emergency room physicians and nurses, moved on out of necessity to other sick patients, all but one who returned with clean sheets to cover Dorothy, hopefully leaving her presentable to family members.

As Dorothy's heart slowed down and I held her lifeless hand, I could not recall a more horrible death other than a trauma case in medical school, a 12-year-old girl crushed by a school bus bleeding out every orifice. No one can predict death, but looking at Dorothy's chart one would guess that death was near - odds are that a malnutritious, demented, immobile body ravaged by stage 4 pressure ulcers would not survive increasingly frequent hospital admissions. I wondered if anyone ever mentioned to Dorothy or her family members that death was coming, that they should prepare for it, sooner rather than later.

Sometimes fear of death is so blinding that we forget to think about how we want to die. Other than certain suicides, we have no control over when we die, even though postponing the moment of death is what medical care is focused on. The only aspect of death we mortals could dictate, given enough thought and preparation, is how death will take us. The spectrum ranges from Dorothy to a peaceful death at home surrounded by love and familiarity, expected and prepared for. I remember reading a survey reporting that most people wish to die at home, although in reality only the minority of people do. I wonder if it is because we become so afraid and occupied, speculating how to fend off death, that we forget death is certain, a natural twin of life, something that can only be fended off for so long. I wonder if people know that hospitals are a horrible place, that once you enter it can be difficult to leave through the front door. I wonder if people know that Do Not Hospitalize is an option. I wonder if people know how to plan for death at home - I certainly do not. Of all the wishes in our lives, the wish for how we die seems as important as any, something to plan for deliberately and carefully.

The line on the monitor went flat and still Dorothy was alone, two strangers holding her hands. The nurse stared at me expectantly - I pronounced the time of death as she left to gather paperwork. I wanted to stay and find out where people go after they die in the hospital. Who pick up the body? Are they put in a body bag? Where is the morgue? I wonder if other doctors know the answers - patients stop being ours once they are dead, even though they remain as human as ever - before and after, especially during death. How we die should never be taken lightly.