Mostly DeadF. Amos Bailey, MD May 2, 2018
In The Princess Bride, the hero Wesley appears to have succumb to torture and has died. In desperation his friends take him to Miracle Max who informs them that
“It just so happens that your friend here is only MOSTLY dead. There’s a big difference between mostly dead and all dead. Mostly dead is slightly alive.”
Lilia Cervantes is a colleague at the University of Colorado Denver who has investigated the healthcare issues of undocumented migrants with chronic renal diseases who need dialysis. They are in a kind of limbo. They are not eligible under any programs to have standard scheduled dialysis sessions. Instead they present to Emergency Departments routinely, once or twice a week, and have emergency dialysis.
As it turns out this is not a good plan for anyone. It is more costly than standard dialysis, survival is negatively impacted because the individual is in a crisis each time they do receive dialysis and the illness experience for patient and family is an emotional roller-coaster.
Lilia completed 20 qualitative interviews with undocumented patients with had chronic renal failure and could only access emergency dialysis. https://jamanetwork.com/journals/jamainternalmedicine/article-abstract/2601078
One of the main themes that emerged from this research was “death anxiety associated with weekly episodes of life-threatening illness.”
What if you had to face death weekly and were dependent on the ED for dialysis?
Wesley only had to visit Miracle Max once in a fantasy film.
Palliative Care has a lot that we can offer to help with symptom management and supporting patients and families in crisis. However, we should always look for ways to improve our healthcare systems so that we are not contributing to suffering. Our nation continues to discuss healthcare delivery. There is no one right answer. Thanks to Lilia Cervantes and others we have information that can help guide us to build a system that provides better, more effective and less expensive care.