Is this normal behavior for someone needing an organ transplant?

[Idaboy]

Noncompliance is very common in people with chronic health conditions. Very.

The reasons are so numerous I wouldn't even begin to guess what's happening with the OPs situation.

Hope this person is able to find peace, whatever that looks like.

Noncompliance is common with people, period. regardless of whether or not they have a condition

 

[EdP]

I'm guessing that he has to stop drinking to be a candidate for a liver transplant regardless of how it is going to be paid for, and that's not a choice he is going to make and his wife knows it. It would be a travesty of justice to give a precious liver to someone who won't show the discipline to make good use of it before the transplant operation is performed.

 

[Azone]

Just went through a similar situation with my father in law. Needed and by some miracle received a heart transplant. He has told me a few times it would probably have just been easier if he died instead. People go to dark places and some just don’t want help and go deep into denial, or they would just rather die and not deal with it.

 

[Fatcamp]

Noncompliance is common with people, period. regardless of whether or not they have a condition

True, but in can be very puzzling for family and friends to witness when someone they love refuses to make changes that on the outside look simple. And for the health care workers charged with their care.

It was a challenge for me as a new nurse to wrap my head around this. I actually took report and walked into the room of a family member who had been admitted for liver failure before realizing who she was. Had read her chart and knew she wasn't a candidate for transplant due to alcohol abuse. So sad. She died a month later.

That was a rough time.

 

[GSPHUNTER]

I do believe there comes a time when a person has had a lot of pain, physical and mental, in their lives they just lose the will to live. At that point there is not a lot you can do, or should you.

 

[thedutchtouch]

apologies in advance for any typos, ive had a few beers which is a bit ironic given the subject matter at hand. it depends on how late stage he is, there's an extremely small chance that if he's super late stage elevated ammonia levels could factor into his mental capacity/decisionmaking power, but realistically if that were the case he's likely not listable anyway, as there's a relatively extensive physiical and psychological workup/eval required. he has to want it, and it seems he doesn't, for some reason, so he won't get listed unless he wants to and is willing to jump through the necessary hoops that our current system has. it seems like he's earlier in the process than that, and it's more of a general denial issue, rather than anything specifically tied to his liver or need for a transplant from what you've said. hard to say more with out knowing specifics, feel free to PM if you'd like to discuss privately, i'm not a transplant surgeon but worked in transplant for almost 15 years (on the donor side, not the transplant center side) and recently lost a family member (in law) due to alcoholic liver disease/noncompliance/noninterest in doing what he needed to, which ultimately led to his inability to be listed, despite multiple family members including his own kids bending over backwards t oget him every possible opportunity. he literally drank himself to death and smiled and was proud of his choice to do so up until almost the end/ after it was too late, some people are just ornery assholes and would rather die than feel like someone's helping them, not realizing that people help them every day, and the lines they draw in the sand are arbitrary. sorry you're going through this, by the fact that you're asking it seems like you're already trying harder than they are, and as someone who's been there (in a different situation), i know how much that sucks

 

[Mag_7s]

@fngTony I wouldn't normally comment on this, as this is pretty far out of my wheel house. I showed my wife this thread as she is a licensed therapist with her masters in behavioral science and owns and operates her own practice. Obviously this isn't a diagnosis, but she said often times people feel very much out of control of their situation and not doing anything about it gives them a sense of control, and there is nothing abnormal about it. My wife is also a cancer survivor who went through the gauntlet of chemotherapy and treatment and validates your relatives feeling.
Furthermore, she added there are a lot of really good comments in this thread .
Best wishes to your family.

 

[Marbles]

Family member (40yo) needs a liver. He doesn’t have health insurance which is complicating things. Overall he’s downplaying the seriousness of this and isn’t taking the necessary steps to get on the list or get some sort of health coverage. The more anyone tries to help with daily tasks, give advice or ask questions the more he and his wife pull away. Is this normal state of denial or signs of mental illness/depression? Just seems extremely odd to be complacent about this.

Unfortunately, it is pretty normal. Some people get overwhelmed, or don't know how to accept help, or live in denial, or some combination with other things mixed in.

If he will talk, just listening is where I would start. Depending on various things, he may not be a candidate for a donor liver. It is possible he does not want to discuss that, or why that is. It is possible he does not want to make a decision, having a donor organ is permanently life altering due to anti-rejection drugs and such.

In the end, all any of us can do is make recommendations, but the other person is under no obligation to follow them. Not having insurance just further complications an already complicated situation.

 

[fngTony]

Thanks everyone! We haven’t considered the possibility that he has made a conscious decision to not seek treatment. Still can’t understand why not but from the medical perspective given here it’s possible that he is already out of time, as in he won’t be medically fit or alive by the time he gets everything together.

 

[Marbles]

Something elso to consider, there is living liver donation. It can open some doors that would otherwise be closed and make a liver available as soon as he qualifies.

 

[Idaboy]

apologies in advance for any typos, ive had a few beers which is a bit ironic given the subject matter at hand. it depends on how late stage he is, there's an extremely small chance that if he's super late stage elevated ammonia levels could factor into his mental capacity/decisionmaking power, but realistically if that were the case he's likely not listable anyway, as there's a relatively extensive physiical and psychological workup/eval required. he has to want it, and it seems he doesn't, for some reason, so he won't get listed unless he wants to and is willing to jump through the necessary hoops that our current system has. it seems like he's earlier in the process than that, and it's more of a general denial issue, rather than anything specifically tied to his liver or need for a transplant from what you've said. hard to say more with out knowing specifics, feel free to PM if you'd like to discuss privately, i'm not a transplant surgeon but worked in transplant for almost 15 years (on the donor side, not the transplant center side) and recently lost a family member (in law) due to alcoholic liver disease/noncompliance/noninterest in doing what he needed to, which ultimately led to his inability to be listed, despite multiple family members including his own kids bending over backwards t oget him every possible opportunity. he literally drank himself to death and smiled and was proud of his choice to do so up until almost the end/ after it was too late, some people are just ornery assholes and would rather die than feel like someone's helping them, not realizing that people help them every day, and the lines they draw in the sand are arbitrary. sorry you're going through this, by the fact that you're asking it seems like you're already trying harder than they are, and as someone who's been there (in a different situation), i know how much that sucks

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.

 

[Jmort1754]

Right now I actually work as a CC nurse in a TICU-Transplant ICU, this type of behavior is quite common. Usually it is followed up with some regret at their later stages when it becomes obvious that death is imminent and they don't have enough "points" to be placed higher up on the transplant list.

Furthermore- most transplants that are not rapid in nature have a list of requirements they have to meet. Nicotine, alcohol, psych / social tests to name a small few.

 

[DuckDogDr]

Girl I essentially replaced at my current job (job has been a bit just to clarify) was in mid 40’s died of liver failure secondary to drinking.. she was also mixing with other meds…

Have a buddy I used to work with that was diagnosed with advanced renal disease.. he was a little older in life mid 40’s when diagnosed. Drs named the changes they wanted he was super diligent about everything.

Quit his job (high stress). Went back to school to be a gourmet chef.. something he always wanted to do.. said it’s now or never apparently.. cut out salts and high fat and a bunch of other things.
He wound up going on dialysis before it was said and done but he matched and wound up getting a kidney about 3 months ago .

 

[Jauwater]

I've been dealing with something most of my life that I'm sure will kill me early in life. It did my brother. I did spend 10+ years going to the doctors for treatment, but little ever came of it.

I dunno why, but I get so defensive when people tell me I need to see a doctor. Maybe it's because I've spent so much time, and money, and so little ever seemed to come from it. Maybe I've become comfortable with the idea of dieing from the illness that plagues me. Maybe it's because I feel like when they say that I feel like it down plays the time I've put in to saving myself. I honestly can't explain it. I find it bizarre myself. Can't explain it, but I could say I know the feeling. I'm certainly not a depressed person. I'm not the down on my luck type. I don't think I have a mental disorder I'm not sitting around waiting to die. Nothing like that. But I hate talking about this stuff to anybody, and the last thing I ever wanna do is go to the doctor. Very ignorant. Can't explain it.

 

[gabenzeke]

I've been dealing with something most of my life that I'm sure will kill me early in life. It did my brother. I did spend 10+ years going to the doctors for treatment, but little ever came of it.

I dunno why, but I get so defensive when people tell me I need to see a doctor. Maybe it's because I've spent so much time, and money, and so little ever seemed to come from it. Maybe I've become comfortable with the idea of dieing from the illness that plagues me. Maybe it's because I feel like when they say that I feel like it down plays the time I've put in to saving myself. I honestly can't explain it. I find it bizarre myself. Can't explain it, but I could say I know the feeling. I'm certainly not a depressed person. I'm not the down on my luck type. I don't think I have a mental disorder I'm not sitting around waiting to die. Nothing like that. But I hate talking about this stuff to anybody, and the last thing I ever wanna do is go to the doctor. Very ignorant. Can't explain it.

I was going to point something similar out. I have type one diabetes. Far from a death sentence or the seriousness of the diagnoses being discussed. Most of the time I am very well controlled. But I go through phases on occasion where I'm just not compliant. Call it laziness, or depression, or whatever. But it happens. I can't explain it. It frustrates doctors and family. And most of all, it frustrates me. I know what needs to be done to stay healthy and for some reason, I'll have a month or so every once in a while where I just don't do as well as I should. I can't explain it. I have a co-worker who once said something about another topic that really sums it up. "It is simple. It isn't easy, but it is simple."

Some things in life that seem so simple have aspects to it that people can't understand. The choice may seem so binary and simple. But for whatever reason, for the person making the choices, it just isn't that easy. To the OP I hope your family member can turn it around and make it all work. Stuff like this is heartbreaking.

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[Predator_SD]

Noncompliance is common with people, period. regardless of whether or not they have a condition

Who is the person someone has to comply with? Nothing more personal than a persons own health conditions and how they handle their own end of life. Only person they need to comply with imo is themselves.

 

[Predator_SD]

I was going to point something similar out. I have type one diabetes. Far from a death sentence or the seriousness of the diagnoses being discussed. Most of the time I am very well controlled. But I go through phases on occasion where I'm just not compliant. Call it laziness, or depression, or whatever. But it happens. I can't explain it. It frustrates doctors and family. And most of all, it frustrates me. I know what needs to be done to stay healthy and for some reason, I'll have a month or so every once in a while where I just don't do as well as I should. I can't explain it. I have a co-worker who once said something about another topic that really sums it up. "It is simple. It isn't easy, but it is simple."

Some things in life that seem so simple have aspects to it that people can't understand. The choice may seem so binary and simple. But for whatever reason, for the person making the choices, it just isn't that easy. To the OP I hope your family member can turn it around and make it all work. Stuff like this is heartbreaking.

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I think what you’re describing is simply the human condition not non compliance. We are all flawed in one way or another.

 

[gabenzeke]

Who is the person someone has to comply with? Nothing more personal than a persons own health conditions and how they handle their own end of life. Only person they need to comply with imo is themselves.

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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[Beendare]

Something elso to consider, there is living liver donation. It can open some doors that would otherwise be closed and make a liver available as soon as he qualifies.

Good point….

 

[Marbles]

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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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.