Need help with a patient!

[smartcookie]

Hi everyone!  I have a fairly new patient who has sickle cell disease.  He is pain medicine dependent, also.  My problem is that he only comes to treatment maybe one day a week for about an hour, usually on a Saturday when I am off.  He will show up very late and when we try to talk to him about it he just laughs it off.  He is in and out of the hospital constantly with sickle cell crises.  I have tried to meet with him several times, but he dozes off during our talks due to his pain medication. He also DRIVES to dialysis in this pain medicine stupor.  I don't know what to do to help him.  He just doesn't want help, I guess, but he still says he is open to talking with me.  Any suggestions? 

[cassandra]

When you met with him, were they scheduled appointments or did you drop in during D?
Does he live alone?

Difficult, but he might have quite some residual kidney function left?

Love, Cas

[smartcookie]

He lives with his "baby mama," but states that she is not his girlfriend.  He does have residual kidney function, but was put on dialysis due to fluid overload stressing his lungs and heart.  I try to meet with him during D, but have tried making appointments, too.  He does not keep appointments.

[kristina]

Dear smartcookie, I feel very sorry about this problem because it is so very difficult to approach...
... In my dialysis-unit there was a patient who did not show any understanding about his dialysis-situation
and the nurses regularly panicked about him not showing up to his dialysis-session,
but unfortunately he was no longer interested to continue with his life ...
... But ... could it be that your patient is still completely traumatized about the fact
that he needs dialysis-treatment three times every week from now on and perhaps a careful talk in this direction
could help him on his way to come out of the trauma ?
Many thanks for your kind care and best wishes from Kristina.

[Charlie B53]

Denial of the importance of continued dialysis coupled with driving under the influence of heavy pain meds are by themselves recipes for disaster, together can be downright terminal.

He, or somebody, needs to have a serious to have a serious talk with the Dr that is prescribing his pain meds.  That Dr must have a serious talk with the patient as to the disabling side effects of the medication.  Either prescribe something like a synthetic that may not have the debilitating effects, or threaten to cut him off.  He cannot be allowed to drive, he is risking not only himself but other people on or alongside the roadways.

While you cannot force the patient to have his dialysis treatment you can stress the need for treatment.   Skipping treatment can be considered a slow suicide.   Is this what he really wants?

[smartcookie]

He is not suicidal.  I think the pain medicines are dulling his senses and only allowing him to pick up some of what I am trying to tell him.  He admits to taking more pain medication than prescribed, and the doctor prescribing pain medicine will not take him off the meds because sickle cell crises are extremely painful..  I think he has gotten himself hooked unintentionally.  Thanks for the advice.  I am going to keep trying to get through to him.  I worry; he has a child.  No child should have to watch his father go through this.   

[Fabkiwi06]

Oh man... there are so many moving pieces to this story.

Is "baby momma" involved with this guy's care in any way? Is she someone who can help keep him to task? I mean, if it was me in that situation and he was living with me, I'd hold his feet to the fire for the sake of our kid - that child needs their dad in the best shape he can be.

If not "baby momma", are there any other friends or family for this guy who can help at least get him to treatments?

Are you in anyway involved with his care when he ends up in hospital? Is there a way to get to him while he's laid up?

Is it possible to talk to his pain management people about your concerns with his admitted dependency? Given the current awareness of addiction, an admission like that should trigger some kind of action from his doctor. I know HIPPA makes it really hard for y'all to communicate, but sometimes they let you sign paperwork to allow it.

Has anyone talked to him to see if he's suffering from depression or some other emotional issues with everything going on? Dialysis is a lot to take on without the additional health issues.

Sadly, he's gonna have to meet you half way and he doesn't seem to be showing any signs of doing so.

[iolaire]

Keep trying, hopefully at some point he will start having kidney failure side effects and think back to your talks and make a change.  There is not much you can do except set the stage for when he is ready to listen.

[smartcookie]

I don't think his "baby momma" is involved.  He has called and asked us not to give any information out to anyone, including family.  I have no control over what goes on at the hospital.  I am going to talk to my medical director about speaking to his physician who is prescribing the pain meds to at least tell him that the patient is abusing these medications and possibly see about getting his driver's license pulled.  I feel terrible about doing that, but I have other patients in the parking lot and on the road that he could possibly hit and kill.  Hopefully, this patient will come to his next treatment and I can discuss all this with him again.  Thank you all!!! 

[Charlie B53]

FDA Rules are pretty stringent on a prescribing Dr.  Once that Dr is informed of abuse or other poor behavior, illegal activity such as driving under the influence, that Dr is REQUIRED to take some form of action.    Whether it is to notify Motor Vehicle Licensing or cancel the prescription , I don't know.

[Simon Dog]

Not just FDA rules.  Once the MD has a letter stating someone is unsafe to drive, it becomes part of the record, and good contingency fee counsel for anyone injured by the patient's driving will discover it and be heard yelling "BINGO!!!".

[Jean]

 I am not a medical person, but it seems to me that you are a wonderful and caring person and I appreciate that you have come to us for advice. The man IMHO is depressed and wants to die, but wont admit it. I feel you have done all that you can, legally at any rate. So, maybe soon you will have a chance to talk with him and get some sense in his head. Maybe not, but dont beat yourself up about it, you can only do so much.

[PrimeTimer]

Sounds to me that this man is screaming for help. He may not say so but I bet he is without any real kind of support system at home but wants it. Sometimes people don't want their family/friends to know the details of their situation out of fear of being blamed, shamed or criticized for it. Maybe his have already done that to him or else they have given him all the advice that he DOESN'T need instead of unconditional love and moral support. Sometimes life can feel like a spectator sport when really, we'd like nothing better than to be a willing participant. In that case, a good coach, some handholding, hugs and a cheerleader squad can go a long ways.

[Charlie B53]

I don't remember them all, but people experience 7 distinct mental stages when confronted with life-changing news such as a diagnosis.   The stages run the whole spectrum from initial denial throughout the range before coming to acceptance and from there managing to take constructive action to deal with the diagnosed problem.

He may still be stuck at Denial, unwilling to admit that this diagnosis can, and will, eventually kill him if he does not follow treatment plans completely.

[Simon Dog]

Skip to 1:30 to get to the part covering the 5 stages:

https://www.youtube.com/watch?v=4g8KeqjSyqg

[Charlie B53]

Thanks Simon.  I'm not a regular Simpson's viewer, but I have seen a number of episodes.  I hadn't seen that one.   My memory may be in error, but 5 is close enough, it gets the point across how people normally react.  It can be very difficult for some to deal with each stage before progressing to the next.  Some can take a long time, if ever.

Another common affliction, one that I admit to, is arrested development.  While not exactly stuck on stupid, sometimes I am not so far past.

[smartcookie]

This man was also diagnosed with sickle cell very young.  He has never had the chance to rebel and I think that this is part of his rebellion.  I feel like he has the attitude of a teenager sometimes, but just seems to laugh off any attempts to help.  I think he thinks he is invincible still.  I am continuing to meet with him anytime he shows up for treatment.  Hopefully, we can get somewhere.

[kristina]

Hello again and many thanks for being so kind and patient .
Best wishes from Kristina.

[Simon Dog]

You could consider having a local funeral director come to discuss arrangements with him during treatment, and explain that person was invited since he will soon be needing his services.

[Charlie B53]

That would be a serious dose of reality, right in the face!

[smartcookie]

Simon Dog, I wish I could!  For a lot of people in my clinic, not just him.  Right now my clinic's missed treatments and signing off treatment against medical advice is staggering.  Last month, I only had five patients who came to every treatment and did not sign off.  Guess who they blame for people not coming and signing off? The social worker, of course!  I am doing my best to educate and send out missed treatment letters, but I can only do so much as once person.  Anyways, thanks for all the great ideas!  You are all so awesome!

[Simon Dog]

Something about leading a horse to water comes to mind.

If you have that many people missing/signing off, perhaps the funeral director could do a group presentation during treatment?

[smartcookie]

Haha!  Simon Dog, that would be awesome!  I am going to do a lobby day about adherence, I think.   I hate having to do those things and I know the patients hate hearing me "preach," but I am so concerned for them.  We went to a different scheduling system in the summer and had to change some patients' times.  They were still on the same shift, but just changed an hour earlier or later.  Some patients are still upset about that, even though we have accommodated patients' schedules and put them as close to their preferred time as we could.  Our Medical Director has now said that patients "noncompliant" to their times need to be put on second shift instead of first.  So we are shuffling patients around to meet that request now.  I feel stuck between corporate and advocating for patients.  With the patients not coming to treatment or signing off, my job to advocate for them is even harder.  Maybe a funeral director and a psychiatrist is in order!  Sheesh.

[Michael Murphy]

This is a tough one, the first rule about men is they can be dumb as a stump and stubborn as a mule.  I will also point out as a male that statement also describes me.  However if this patient has some sense it may be possible to get through to him.  Every center has a group of people usually male who think that rules are meant to be broken over time these have generally died.  My center just lost a nice guy who thought he would live forever.  He regularly came in 4 kilos over And had to have 4kilos removed during treatment.  He had a New Grand Child and wars excited about her.  But he pushed his bodyguard to hard for so long he died of a heart attack.  Dialysis patients are at a high risk of death and the only way to improve your odds is to be compliant.






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