When talking with patients/families about end of life issues, there’s a BIG difference between talking about some future eventuality versus discussing that same outcome when it has now turned into reality.
And our friend HOPE, has a lot to do with it.
a Patient
Mr B is 67 yrs old with multiple co-morbidities including heart failure, diabetes, arthritis, and end stage renal disease. He started on hemodialysis (HD) 8 years ago. All of this has taken a toll on his body. Mr B is now quite frail, and on the days when he does not have to go to the dialysis center, he is typically found on the couch or in bed- reclining and watching tv. He just doesn’t have the strength to do much else.
Mr B was admitted to the hospital from his outpatient dialysis unit because his blood pressure was so low that he was unable to tolerate the HD session. And that was despite being on daily medications to raise his blood pressure. Now in the hospital, the only way he can make it through a complete dialysis session is with the addition of iv pressors- which is impossible to do at an outpatient dialysis unit- so he’s stuck in the hospital.
Now I am asked to meet with Mr B and his family, ostensibly about “now what?” But, the conversation is really: “Mr B, you are dying….., now what”. Not sure they (either the provider or Mr B and his family) have really considered that reality.
the palliative consult
I met with Mr B and his large supportive family. We talked about his health over the past few years and his current condition. They were shocked to learn that it was even possible to not be able to tolerate dialysis, so this was all very new to them. However, when discussing his condition over the past few months, they all acknowledged his overall significant decline.
Then I paused, and allowed them a chance to digest this information. And someone finally asked, ‘well what does this mean?’. I gently explained the real issue: Mr B is dying. Because it would only be a matter of time, likely days or perhaps a week or two at most, when even with pressors his blood pressure would not be high enough for HD. And when HD was no longer possible, his death would likely follow in just a few days.
While there were tears initially, there was also acceptance. And since Mr B felt “good enough”, and could enjoy visiting with his family, he was not ready to stop the dialysis. So everyone, including Mr B, agreed that continuation of his hospitalization would be ok- so he could continue with pressors for as long as it would allow him to tolerate dialysis. But once the pressors were no longer effective, then all agreed it would be time to bring him home- so he could die in more peaceful surroundings. And I explained how home hospice support could help- which seemed to bring Mr B comfort.
One week later
What was previously theoretical, was now real: even with high dose pressors, HD was impossible. So we needed to get back to our previous discussion.
Because of our earlier discussion, where Mr B and his family really seemed to ‘get it’, that no more HD meant his death was imminent, I expected Mr B and his family to be ready to shift to comfort focused care, with the goal of getting him home quickly with hospice support.
And this lead me to break one of my rules.
I neglected to start back at the beginning and inquire about what they understood no more HD meant, before starting to talk about getting him home with hospice support (again, thinking I was following up from our last discussion).
His family’s reaction was instantaneous: “you are trying to wash your hands of him”, “isn’t there anything else?”, “you just don’t want to try”….
I immediately recognized my mistake. I had failed to appreciate how HOPE had pushed its way into the picture over the past few days. Each time Mr B tolerated HD, HOPE had crept in a bit more, to push aside the reality that Mr B was actually nearing the end of his life.
I gently assured them that in fact “all had been done” to continue HD, and that we were in no way trying to wash our hands of Mr B; our intention was to honor his previously expressed wishes. And then Mr B spoke up, because he understood from the beginning of his hospitalization that his body was telling him that HD or no HD, he was dying.
HOPE had not come to Mr B during this time because he knew his reality. He was able to calmly and firmly remind his family about what had been decided at the last visit. And he put them at ease, and helped them see that it was time for him to go home.
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