A few years ago, I authored a ‘letter to the editor’ published in the journal Transplantation. The topic: the utility of including palliative medicine providers in the world of transplantation- specifically, liver transplantation. Since patients awaiting liver transplantation are truly the ‘sickest of the sick’, if there is any group of patients who could potentially benefit from our service, it’s them.
Background
For my fellowship project, I surveyed US liver transplant programs to quantify how many either incorporated palliative medicine providers into their ‘team’ or at least would refer patients to palliative medicine for additional support. Of the centers that responded to my query (~55% of active programs), only 1 answered in the affirmative. The survey did not inquire “if not, why not”, so the exact reason is unclear, but my bias is that it’s due to palliative medicine not even being on their radar as a beneficial service, or the conflation of palliative care with hospice/end of life care (which is the antithesis of liver transplantation).
The survey also laid bare the unwritten rule that patients had to remain full code while awaiting transplantation. And this just seems cruel to me. I certainly understand the expectation that patients be willing to accept the burdens of continuing all active treatments (including attempt at resuscitation) in the postoperative transplant period. But in light of the reality that many patients will die without ever receiving a transplant, it seems cruel to expect patients whose symptom burden is so great, have to avail themselves to CPR when their body has finally failed. This seems to confirm the basic misunderstanding of code status- conflating DNaR with ‘no treatment’ (as discussed in the previous post).
I have heard some anecdotal stories about transplant programs starting to include palliative providers, but I’m not certain it has really penetrated as widely as it could/should into this world. And based on my recent experience with two highly regarded liver transplant centers in my area, more work is needed.
a patient
Mr D, 45 yrs old, has end stage liver disease due to years of alcohol abuse. He has now abstained from alcohol for more than a year (a prerequisite for even being given a referral for evaluation), in hopes of an eventual liver transplant. But despite sobriety, his liver disease continues to worsen. During evaluation at the nearby university program, a localized area of hepatocellular cancer was found and successfully treated with chemoembolization. But he continues to have severe symptoms due to his liver failure (difficult to control ascites and encephalopathy) and has had several recent hospitalizations.
A final decision regarding his suitability for transplant has yet to be made- i.e., he has not yet been placed on the waiting list for a liver.
Mr D’s social situation is challenging (at best). He cannot work due to his frail health, so finances are a major problem. Although he has assistance for medical care- this does not fully pay for all needed treatments nor the basics for everyday life. His girlfriend does her best to care for him, but she has to work (several jobs) to help pay the bills. They unfortunately have few friends and no family in the area. Mr D does have family in Mexico, but they are unable to get permission to travel to the US to help.
I have seen Mr D multiple times. Every time he gets readmitted to the hospital, there is real concern that his condition will precipitously and irreversibly decline; and the thought of him in the icu, intubated- is very distressing for providers, particularly since he has not yet been accepted for placement on the transplant list.
Yet Mr D remains very clear: he is not giving up hope. As long as there’s even a remote possibility that he could get a curative transplant- his goals are clear: “Keep me alive”. He does understand that even if he gets listed, he may never receive a transplant in time- and he has expressed that if there is no possibility for transplant, then he would return to his family in Mexico- so he can die surrounded by his loved ones, in his family home.
Talking to the transplant center
Because the postoperative regimen is so intense following liver transplantation, a patient’s social support is an important factor in the decision of whether or not a patient is a suitable candidate for the procedure. Many of us caring for Mr D remain concerned as to whether he will ever get placed on the list because of his poor social support. Particularly with his wish to die with his family in Mexico in mind, and after getting permission from Mr D, I contacted the transplant coordinator in hope of inquiring about the true possibility for him to be listed. When I introduced myself as “Dr Semer, from palliative medicine”– I couldn’t even finish my sentence when she asked “has something changed for Mr D?, does he no longer want to be considered for transplant?”. I quickly dispelled that thought as I didn’t want my well-meaning inquiry to impact his potential for listing.
And while she assured me that although they are also concerned about his social situation, he is still being actively considered for listing, this interaction made me sad- on multiple levels.
- Patients with end stage liver disease are the sickest of the sick- I would think it would be encouraging to hear that their patient was being followed by palliative care. Particularly since the majority of patients never get a transplant, it should be comforting to know their patient has additional support, but instead I felt a sense of aversion to the very concept.
- The reality that despite trying to get the word out about what we really do, there continues to be a misunderstanding around palliative care- and there remains a belief that we only see patients who have ‘given up’ or are near death.
It seems not much has changed in the four years since I did my survey.
Obviously, there’s still a lot of work to be done….
Subscribe to my blog feed