But first, you must understand what it is you are asking
I’ve written several posts about the importance of discussions centering on how a patient wants to live during the time they have left (the ‘goals’ discussion) rather than concentrating on what they want when they are dying (the ‘code status’ conversation). But for practical purposes, for example, a patient with advanced illness now hospitalized for some reason, the code status question does specifically need to be answered. Providers often dance around the question, especially with patients who tell them they want everything. But sometimes you just have to ask the question straight-out.
And you’ll often be surprised by what you hear.
a Patient
Mr E, 62yrs old was diagnosed with pancreatic cancer several months ago. As is all too often the case, at the time of his diagnosis the cancer had already spread to his liver. Although he knew his disease was incurable, he eagerly started chemotherapy in hopes of slowing down the progression of his disease.
Several weeks ago, he developed symptoms of nausea/vomiting which continued to get worse despite the most powerful anti-emetic medications. He has now been admitted to the hospital with severe dehydration and for a work-up to find the cause of his symptoms. Tests have now confirmed the worst news, that these symptoms were not due to the chemotherapy, but were due gastric outlet obstruction (food could not leave his stomach and go on to the small intestine for continued digestion) secondary to tumor progression.
Mr E’s options were limited: shift to comfort focused care (because chemotherapy had been ineffective) vs attempt an intervention to allow food/liquids to get around the blockage. Because of his tumor and anatomy, the only viable option for this was an operation to make a connection between his stomach and a more distal area of small intestine- a procedure with considerable risk in light of his overall condition.
Mr E was adamant; he was not ready for comfort focused care. His first grandbaby was due in a few weeks, and he was willing to continue to try anything to prolong his life.
And that was that.
Mr E had the gastric bypass operation, and not unexpectedly, his postoperative course was rocky. As his stay in the hospital lengthened, providers worried about his ‘code status’. Because although each complication could potentially resolve, there was always a risk for significant deterioration in his condition. And the thought of performing CPR on this frail man with a very limited prognosis made everyone uncomfortable. Mr E had been so definite in his desire for everything that it was naturally assumed that this included a desire for attempt at resuscitation if he had a cardiac/respiratory arrest.
now the palliative consult
Mr E, his wife and 2 adult children (one of whom was very pregnant), and I spoke for some time. He described himself as having been a very healthy and independent person his entire life and the transition to being ill and dependent on others was very difficult. However, from his perspective, being in the hospital, even being in the ICU possibly on machines, would not be deemed to be too burdensome. “It’s better than being dead”. While a bit tearful, Mr E was quite firm as he expressed his desire to try “everything” that might prolong his life. As long as he was still alive, there was hope.
But I wanted to push a bit harder and determine what he was really envisioning for himself. So, after acknowledging his desire to keep fighting to stay alive, I (bluntly) asked, “what about if your heart stops or you stop breathing?”.
Mr E’s answer was immediate and clear. “Leave me to God, because that’s my time to go”. From his perspective, once he was dead- there was nothing more to be done.
From Mr E there was little emotion and no tears. And although his family was quite tearful, they offered their full support. I changed his code status to DNaR. And the providers no longer had to worry about this issue.
All someone had to do was ask.
For many patients, there’s a stark difference between what they want when they are still very much alive versus what to do for them once dead. Patients know the difference. Providers on the other hand, often conflate the two.
and therein lies the problem.
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