Compliance Or Defiance When The Stakes Are Life Or Death

04-13-2007 | Categories:



Compliance, the 10 April 2007 entry in the the Got Liver? blog is also the most recent addition to my informal collection of posts offering insight into treatment adherence based, at least in part, on the writer’s personal experience.1

The author of Got Liver? explains his motivation thusly,

In July of 2006 I was diagnosed with End Stage Liver Disease caused by Non-Alcoholic Steatohepatitis (NASH). I was given about a 50% chance of surviving one year without a liver transplant. On January 28, 2007 I received the Gift of Life from a 23 year old man. His generous act of organ and tissue donation and that of his family to honor his wishes not only saved my life but those of others as well. This blog is the story of my progress from diagnosis to transplant and beyond….

The Got Liver? Compliance post specifically addresses the transplant candidate’s preparations for and commitment to compliance with the medications, testing, and other portions of the pre- and post-transplant treatment plans. While this process, as seen from the transplant recipient’s point of view, is enlightening and the entire post is worthwhile reading, I found one section especially surprising.

I had been cognizant of transplant-associated compliance problems such as the economic costs of adherence, the difficulties of following the strenuous requirements of treatment protocols, and the ethical issues involved in ranking potential recipients for the too-few organs available based on the anticipated compliance capacity of the candidate (along with physiological criteria, age of the patient, and other factors). I was not aware, however, of the appqrently significant number of candidates who are openly and vehemently noncompliant, as described in this excerpt:

I have read several blog posts by people who are in the process of being evaluated for transplant. They have been very angry because they have been deferred or placed on inactive status on the list because of non-compliance issues such as refusing to get lab tests, refusing to take medication as prescribed, or simply refusing to show up at the designated time for appointments.

Still, these patients feel they have a “right” to the transplant because they’re sick. Some have even claimed to have taken their surgeons to task and threatened more or less to “take my business elsewhere” if the surgeon didn’t let them off the hook for their own refusal to follow simple directions. One alcoholic even threatened that she would go to Panama or Sweden and get a transplant. While she may have a chance in Panama if she can afford to buy off someone, I doubt she will have much success in Sweden since they tend to operate similarly to the U.S. in organ allocation. Still, she is angry that she has been deferred for a liver transplant because she refused sobriety treatment and then refused to have urinalysis to show she was not actively using alcohol!

This post is an interesting take on a healthcare scenario in which compliance is, all too literally, a life and death matter from somebody who has been there.



Footnotes


  1. Other posts in this group include the following:
    The Misdiagnosed Patient
    There is a fine line between being a Squeaky Wheel & a Pain In the Butt
    Looking At Patient Compliance From Both Sides Now [back]

« Connection Between Knowledge and Compliance Unclear
Healthcare Compliance: Who Signs Up For What »

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1 Comment

  1. Thank you for referencing my post. I think I may have had a little more understanding and receptiveness to the process because of my background in medical and particularly surgery. I was also lucky enough not to have substance abuse or alcohol issues either in the past or currently. My only addiction was food.

    Thank you again for your mention on your fine blog. I’ve enjoyed browsing other posts here as well.

    Buck Bannister
    Liver Transplant Survivor, 1/28/2007
    http://www.gotliver.com

    Comment by Buck — April 13, 2007 @ 7:12 am

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