Arizona nurse Amanda Trujillo was fired in April 2011 after providing education to and making a pallative care request for her end-stage liver disease patient. Apparently this patient was scheduled for pre-transplant evaluation, and the physician was none too happy that Trujillo’s patient advocacy thwarted the plan. (“threw a well witnessed tantrum in the nurses station”, according to one report).
While I have no dog in this particular hunt, so to speak, I find it notable the patient had end-stage liver disease. Practically every published study I read (thousands at this point) make some statement in the abstract about ‘living donor transplants’ as the ‘best treatment’ for end-stage kidney and liver disease. It’s made me wonder if this pervasive belief affects a physician’s communication with patients, if s/he inadvertently steers the patient toward the physician-preferred treatment rather than respecting the patient’s autonomy.
Naturally this question manifests itself in the hate mail I receive which often accuses me of causing would-be recipients’ deaths because I don’t present living donation as all rainbows and lollipops (as if a transplant is a panacea), but it is more effectively demonstrated in the myriad public solicitations dotting newspapers, blogs, social media and the like. In addition to the heart-string-tugging depiction of the would-be recipient’s character, we get a statement or two about how ‘safe’ living donation is, or how ‘a kidney is a spare’, or the ‘liver regnerates’. Often with a “they make sure you’re healthy first” and “all costs covered” comment meant to instill trust in the people who benefit financially from the proffered liver or kidney.
But there is never, and I do mean never, any word about risk, or death, or depression, or lack of friggin data, which leads me to I ask myself: why do these kidney/liver want ads always say almost exactly the same thing? And my conclusion is: because this is what would-be recipients are being told.
Case in Point: Dr. Peter Laird:
When I was entering the confines of the world of ESRD, the mantra I heard over and over again was I had to have a transplant from my entire nephrology medical team and essentially every one of my colleagues in the Internal Medicine and Family Practice departments…I diligently researched the extensive risks of renal transplant especially in light of my prior cancer history… On my own insistence, I requested a dermatology evaluation understanding the increased risk of skin cancer post transplant, and that is when they discovered a very early malignant melanoma. With two cancer scares in my life completely cured by early surgical removal, I am not willing to add any further increased risk of future cancers from the immunosuppressive regimen after transplant.
Even prior to withdrawing from consideration of the renal transplant list…, I had decided to fore-go a preemptive transplant offered to me by my wife and daughter…I determined that renal disease was my burden to bare and I would not place another healthy individual at risk for what is my disease after all…In addition to my recognition of the risks of transplant and the risks of donation for my loved ones, I became aware of the data for daily dialysis showing equal outcomes compared to cadaveric renal transplant. Pauly et al demonstrated this in a widely publicized paper in 2009. Unfortunately, the majority of patients are told that transplant has superior survival to dialysis, which is only true if comparing to in-center dialysis alone.
Even Laird, a physician, couldn’t rely on his providers, or his doctor peers, to give him comprehensive information regarding his condition and treatment options. He took it upon himself to educate and advocate, and I’m sure to some extent, overcome the resistance of his pro-transplant medical providers, to embark on the treatment he deemed best for his overall quality of life.
Not long ago, I received an email from a woman whose kidney disease had advanced to the point where her doctors suggested she begin to think about a transplant. Somehow in her research, she stumbled upon LD101, which motivated her to thank me for giving her all the information her physicians didn’t. Hovering around the average age of an individual with end-stage renal disease, she admitted her father had died far younger than she of the same diagnosis, and she simply wasn’t going to hurt someone else for her benefit.
On Living Donor 101, I argue that it’s not only prospective living donors that are being denied their legal and ethical right to informed consent, but would-be transplant recipients too. While prospective living donors are told about ‘alternative treatments’ for the recipient, there is no requirement for the would-be recipient to be informed about the risks of donation to the living donor. Since the bias toward living donor transplants is so strong, the course of treatment (transplant) is assumed. As indicated by the Trujillo incident, such an assumption can be false. Patients want the information to make an educated decision. And if autonomy is the guiding principle of the doctor-patient relationship, then there is no good reason for denying them the opportunity. Even if the choice differs from the doctor’s.
[note: I don’t think I’ve ever received hate mail from a recipient, at least not on their behalf. It usually originates from the loved ones of recipients, or folks involved with finding donors for would-be recipients. The former includes some living donors, who lash out in denial of the harm done to them by their generous deed]