This is not an uncommon ICU story. A patient with cirrhosis has been on the transplant list for years. He develops progressive hepatic failure, and the sequelae of liver disease start manifesting. He becomes confused, develops varices, builds up fluid in his abdomen, starts bruising and bleeding. The blood pressure starts dwindling and the kidneys start failing. He needs a new liver or he will die.
About 6000 liver transplants are performed in the U.S. every year, but there is still a big organ shortage; approximately 1800 people on the transplant list will die because they could not get an organ.
This patient presents with encephalopathy, pancytopenia, and hypotension. I admit him to the ICU, hydrate him, start him on norepinephrine, begin lactulose, and hang antibiotics. His MELD score, which determines liver transplant priority, is quite high and I talk to his hepatologist; both of us agree he needs to get to a transplant center. Transferring him earlier is probably safer because things will only get worse. I contact nearby tertiary hospitals and tell his family this may be his best chance.
Then the labs come back. Unfortunately, he is septic with E. coli growing in his blood. In my head, in my experience, I know this is it. He won't survive a systemic infection, and no one is going to give him a liver until he clears it. He doesn't have time. I've already started a third pressor, and I know intubation is just around the corner.
I am still learning to deliver bad news. It's one of the hardest things I do. How do you walk into the conference room knowing that hope is all that is sustaining the family but that the hope is ephemeral? How does the pendulum swing from one extreme where you are scrambling to transfer a patient to a transplant center to the other where you believe the best thing is comfort care? Is that my goal? If I am certain he will not survive to transplant, should I recommend stopping aggressive treatments and heroic measures? I don't want to intubate him. I don't want to dialyze him. I don't want him to suffer without a prospect of getting better.
Hope is tenacious. Even when something is doomed, we ache with hope. Even the most rational of us find ourselves in situations where we pray, wish, bargain, yearn. Ultimately, after hours of discussion with the family, we ended up transitioning to comfort care; he was never intubated and could communicate until the very end. No one would say the situation was good, but I have seen so many worse deaths and I'm glad he was pain-free, talking to his wife, and surrounded by his children in his final moments.
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In ancient Greece, the asclepion was a healing temple dedicated to Asclepius, the God of Medicine. Asclepius learned the art of surgery from the centaur Chiron and had the ability to raise the dead. The Rod of Asclepius is a roughhewn branch entwined with a single serpent.
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Hi! I am Craig Chen, a third year resident physician in anesthesiology at Stanford Hospitals and Clinics. I went to medical school at the University of California, San Francisco. Prior to medical school, I studied philosophy and biology at Stanford University, along with a minor in creative writing.
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3 comments:
Do you struggle with walking the line between delivering the bad news while communicating with the family (and patient if the situation allows) without them feeling like you are "abandoning" them? What are your thoughts regarding this delicate balance between an honest prognosis and stripping the patient of all hope?
I hope to be able to learn how to walk the line between delivering the truth with compassion, while providing some small measure of comfort by communicating that I am still involved in their care. I hope that none of the people I am tasked with serving will feel as though I have abandoned them. Although I have never been critically ill, I do believe that being "present" with a suffering soul/family may alleviate some small burden of the pain and suffering, or at least not cause additional strife while stripping them of all hope.
In my short life, it seems as though the loss of all hope is worse than death itself.
Thank you for such a well-written, reflective, and thoughtful comment. Everything you say is entirely true. I am in the process of writing a chapter on End of Life Care in the ICU and I spend some time discussing this. In my chapter, I write, "During this process, many practitioners recommend careful attention to the language used. Instead of using phrases like “withdrawal of care,” which may be interpreted as abandoning the patient, clinicians should use phrases like “withdrawal of the ventilator” or “focusing on comfort rather than life-sustaining measures,” which are more specific."
I also discuss ways of affirming a patient's dignity at the end of life based on a 2014 NEJM article on the ABCDs of dignity-conserving care. There is data that family satisfaction increases when the process of withdrawing care occurs over longer than a day. Quality of communication, expressions of empathy, non-abandonment, assurances of comfort, provisions of written information, and family presence at the time of death also helped.
I will be the first one to say it's easy to say all these things and nearly impossible to do all of them. The ones I look up to most are experienced palliative care practitioners. But I've been in this situation so many times and found it so difficult to wrestle with my emotions, be present for the family, balance honesty and trying to protect the family, negotiate the uncertainty of prognosis with the data I have, etc.
Good luck in all these situations! I am always learning myself how best to work with them.
Thank you Dr. Chen, I've been enjoying reading both blogs. I look forward to further reading on the topic when you have completed the chapter.
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