Is it hubris? A feeling of impotence? Or burnout from seeing so much suffering?
I’m an ICU doctor, and a fellow in palliative care. One of the most frustrating phrases I hear from my ICU nurses is “what are we even doing with this patient?”—usually in reference to their sentiment of doing too much that’s (in their opinion) too futile.
I get it. I used to feel that way myself. Frustrated by families that insisted on “doing everything” even though as healthcare professionals we think we know exactly how this is going to go, and it won’t go well.
The most recent time a nurse expressed this to me, it was about a 42 year old patient of mine with relapsed AML who presented with a WBC of 120,000. I met him on transfer to ICU for respiratory failure/renal dysfunction. Over the next several days we managed to stabilize and “tune him up” well enough for the oncologist to say “this was our window” to start chemotherapy. The hope was to try to get him to another remission like he’d had less than a year ago, followed hopefully by a bone marrow transplant. It took research on my behalf to understand the odds of this happening, and they were better than I had thought.
I had met his wife when he initially transferred to ICU. We had too many things in common...we shared the same first name, both had boy/girl twins (theirs were 11), had the same favorite dog breed, etc. I work nights, and we bonded when I would take over his nightly care in ICU. When the oncologist wanted to start chemo, she said “I want to talk to Julie first”.
“Do we do this?” she asked.
We spent over an hour that night (at an absurd hour) talking about if/then, with me going down each trail with risks/benefits/burdens. I did some of my best palliative care work in the middle of the night, helping her understand the options (her husband, my patient was too wiped out to participate much)
and reasons for pursuing one route over another. She asked my advice. “We know how this goes if we do nothing. I would have a different perspective if the regimen would be anticipated to decimate him, but he’s tolerated these drugs before without problems. Admittedly he’s sicker this time.” Lastly, the epiphany for her came when I reminded her that they had the ability to stop therapy at any time.
She (and he, when coherent) chose to pursue chemotherapy, and this was when the nurse expressed her frustration. She hadn’t witnessed the extended conversations we’d had, and I explained it. He has 11-year-old twins he would do anything in his power to try to live for; his wife was trying to figure out “when is enough, enough?”, and we were debating that daily.
When we ask “what are we even doing here?”, is that based on what we would want for ourselves, or what we understand the patient/family wants (and why)?
One of the most foundational concepts I’ve learned in fellowship had to do with how individual the definition of a “good death” may be, as after all, that is the ultimate goal for our work in palliative care. For some, their values will mean that it is clawing tooth and nail at any chance to survive, no matter what they have to go through. For others, it will be dying in a place they have access to whatever they need to be treated until it’s time to stop, maybe even in the hospital. For others, it’s a comfortable death at home surrounded by familiarity and family.
For my patient and his wife, their children were what motivated them to do everything they could to help him survive. And yet, they tempered this with an acknowledgement that suffering without benefit wasn’t worthwhile.
He graduated from ICU to the ward and spent the next week receiving chemotherapy, with expected (but prolonged) neutropenia and transfusion-dependent anemia and thrombocytopenia. I stopped in on my days seeing palliative care patients, and he appeared to be holding his own...
...until 0530 one morning when he was again in rapid atrial fibrillation, anasarcoid, hypotensive and transferred back to me in ICU. A code blue pulled me from his room before we could have our usual discussions about where we were, what I might be able to fix, and whether we should
try.
When I returned for my shift that evening, he was comfort care. His wife hugged me and our shared glance acknowledged “we’re there”. He died the next evening just before I came on shift, and his wife asked to see me before she left the hospital. One of his twins was at the bedside, red rings around his eyes from crying. We cried and hugged; the fiercest hug I’ve ever felt, with her sobs on my shoulder. As terrible as his death was, there was peace in knowing they had made the best possible choices for their family and been supported in them. Someday his kids will realize that, too.
If I can accomplish only one thing in my “next career”, I hope it would be helping colleagues expand their viewpoint beyond what they would want for themselves, and to take the time to ascertain and champion what our patients/families need to have some solace in the horrible choices with which they are faced.
There’s peace to be found, for healthcare workers too, in helping patients procure whatever a good death means to them. If we can look beyond our differences (the course we ourselves would choose) and see the commonality (we all want a good death), maybe we could be fully present as we walk alongside them. With less judgement, and more compassion.
