Is this normal behavior for someone needing an organ transplant?

[Beendare]

I think of it is compliance or adherence to the treatment plan. The question then becomes why? Have I prescribed a medication the patient cannot afford? Did I not adequately explore their goals of care? Are they experiencing a side effect that they find to not be worth the benefits? Do they actually understand the benefits?

None compliance is when someone tells me they want the benefits and they want the treatment, but then do not follow through. Sometimes it is as simple as switching from a twice a day medication that is preferred to a less preferred, but still efficacious once a day medication. Sometimes it is because a treatment plan was forced on them and not explained. Many times a long discussion improves adherence. Though, sometimes it instead results in a change to the plan. Sometimes that change is accompanied by a statement like "he is aware of the high risk of (insert horrific outcome), but per shared decision making does not want to pursue (insert treatment)." This may have further information, such as "he prefers to treat with (insert herb/ritual/etc) and is aware that there is not quality evidence of benefits."

The frustrating ones are those who want the good outcome, agree to treatments, understand the why, still don't follow the plan, then blame the medical community for the predicted outcome of non-adherence. Or the once who fixate on a very rare potential side effect while ignoring the very real benefits and asking me to still fix their problem. I usually end up telling them I cannot perform magic nor miracles.

Good post, your compassion is impressive. My RN wife is the same, doing home health as a wound care specialist.

Some folks simply don’t have the self discipline. Their bad habits overtake them. Then, sad to admit, there are some dumbass people out there.

Its frustrating as a person like the OP that cares, or a caregiver like yourself or my wife….but at some point we need to let them be…and spend our time on the folks that do care.
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[thedutchtouch]

I don't mean to get in the weeds but some of this is inaccurate..patients with elevated ammonia levels get listed all the time.....patients without active substance abuse can get rapidly listed in less than an week......yes for many patients they need to prove no alcohol, and yes they have to undergo extensive testing....but yes like many things with adult patients, ultimately they have to make decisions and commit to their health and what is being recommended.

I meant that if ammonia levels are to the point that they are affecting cognition then the patient is likely late-stage and may not be able to be listed due to the transplant center's medical criteria, not that elevated ammonia by itself is a contraindication, if they were the case hardly anyone with liver failure would get listed but see how I worded that poorly. In my experience even expedited listing for liver and lungs would take a few months or seemed to never work out in time frames we "needed" it to, while heart and kidney could be done in days, as likely many of the required tests/information was done, and only blood work for cross matching prior to transplant for kidney or post for heart was the main concern. Not sure how they expedite all the psych eval side, I wasn't involved in that at all, I worked on the donation side not the transplant/recipient side though so relaying anecdotes from that end.

Ultimately though I agree we're unnecessarily getting into the weeds, sorry OP you're dealing with this, but perhaps you can release yourself from the burdens your empathy brings and embrace that he's in charge of himself. It's hard, but that type of thinking has helped me.

 

[Steely6587]

Their life, their choice.

 

[fngTony]

Their life, their choice.

Yes but just tell everyone what the decision is instead of leading us on.

 

[Fatcamp]

It's not a person. It's the guidelines for remaining healthy. Noncompliance in this context isn't a character judgement most of the time. It's just saying a person isn't complying with the requirements to stay healthy.

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Ya, I'm not judging anyone, glass houses and all that. If someone has a better term I am happy to learn.