Anonymous, are you out there?
The comment from Anonymous on Pulmonary Hypertension just popped up, and I really hope she got to read on and see A little of this, a little of that, where I reported that Gina had come to visit post transplant, feeling good and on her way home. I don't know how or where she is now, but I like to envision her feeling good and carrying on normally with her family.
It's easy to get excited and think everything is grand when organs become available and are successfully transplanted. But the fact is, receiving a transplant is the beginning of a new way of life for everyone. Strict medication regimens, episodes of rejection. Of course, it depends on the organ; some are easier to swap out than others. So there is life, but the quality is highly variable.
On that topic, last week I cared for a man in his seventies who recently had a major abdominal surgery for treatment of cancer. The procedure he had is an extensive one. He spent 15 days in the hospital, went home, and came back with major complications requiring an urgent procedure in interventional radiology. Later that day, as I was monitoring him after the sheath was removed from his artery, he looked at me and said, "Why didn't anyone tell me about all this?"
"All this?" his wife and I said together.
"The tubes. No one told me I'd be going home with tubes weeks after my surgery." He was referring to the drainage tube and the feeding tube he and his wife had been maintaining at home.
Now, this is a good time to note that we patients don't remember most of the information we are told. So, the surgical team could very well have given excellent explanations prior to surgery. But, he still had a good point! He was not even remotely prepared for his experience, had no idea how significantly his quality of life might be impacted. And we must ask, then, how someone can give informed consent when they know so little about what to expect? It is not enough to talk about the procedure that will be done. Every effort must be made to share the quality of life issues that will be apparent in the immediate postoperative period and further along. To wit:
"They told me it would be a big surgery, but I didn't know what that meant. I had no idea it meant all this," he says, gesturing vaguely at his belly. He looks up at me sadly and says, "Do you think I'll need chemo after this?"
"I have no idea," I say honestly. "No idea. It sounds like you have some good questions for the surgical and medical oncologists. Sounds like you could use some more information to have an idea of what's coming up next, and what your options are." He nodded vaguely. "Every time you are presented with a treatment or procedure, I encourage you to ask lots of questions. Things like, how might my life change during this treatment? How long do you think it might last? How might things be different if I choose not to do it? With every choice, there will be benefits and drawbacks, and gathering more information can help you decide how to make use of the resources available so you can hopefully live in a way that is acceptable to you."
When I get back to work, he'll likely be gone. I really hope he gets some good time at home, free from complications and treatment related miseries.
To return to what prompted a response to Anonymous, I realize many of my descriptions are not very reassuring, but they are honest. They are my version of honest, of course, because we all have our own unique version of reality. I know that sometimes I may favor one side of the story more, but that's part of the therapeutic process that the writing is for me. Principally, I feel like we owe it to ourselves and our patients to do our best to be honest, all the time, about everything.