Depends on the local practices, the hospice policy, and possibly local applicable law.
But in my jurisdiction all I generally need to do is state that I feel the patient has a 50-50 chance (or worse) of expiring from their disease within the next 12 months.
And for my cirrhotic patients who are in and out of encephalopathy with worsening edema, horrible albumin levels etc. that’s a pretty safe statement.
I had one guy who lasted 3 years instead of 1, but I also had a guy last 2 weeks when I thought he had more than that in him. It evens out.
Qadgop,
Sounds like you have a lot of experience with this. He is in CA and has Kaiser HMO which may limit his home care options but I’ll check and see what they offer. I’ll also reconnect with his doctor and see what she thinks. She’s very young and I don’t get a sense that she has had much experience with alcoholics and long-term cirrhosis. She just keeps encouraging us to stop his drinking.
Thanks!!
start looking for institutional hospice also if that is coverage available.
it takes time to get care and payment methods and medical prognosis all together. the more prepared ahead of time you can be the better. knowing what places will take his insurance allows you to watch for openings when the medical situation warrants.
There actually is a fairly accurate way to estimate survival in people with cirrhosis (although the predicted ranges the method yields are broad).
It’s called the Child-Pugh score and gives points according to whether or not certain complications of cirrhosis are present. The prognosis depends on the number of points a person scores.
As you can see in the link, three of the prognostic factors are based on blood tests (bilirubin, albumin, INR - the blood level of each being a reflection of the degree of (loss of) liver function) and two clinical features (ascites, which refers to the distended abdomen people with liver disease can develop; and hepatic encephalopathy which is a form of brain malfunction that occurs in advanced liver damage).
I admit it’s not terribly helpful, especially when things are quite advanced or when you’re trying to determine a narrow time frame for prognosis.
Everyone, thanks for the information.
John, residential hospice is going to be a last resort choice. He values privacy and control above all. He would rather suffer and die alone with no help at all than be institutionalized. He has a very traumatic history. He was institutionalized as a child under awful conditions. He also has two little dogs that are his only companions and I’m sure he couldn’t have them with him. One idea we have brought to his attention is to move him across the country to where we are. Caring for him here would be much less expensive and we would be able to help more. However, that would be a huge move for him and I don’t know how much time he realistically has. It would be a bummer to start the process to have him go in the midst of it all.
Karl, I’m familiar with the prognostic factors but his doctor didn’t tell me anything except that he has high ammonia levels and that she put him on Lactulose. I was concerned that he was eating a lot of sweets including ice cream and he’s diabetic but she surprised me by saying that his blood sugar was doing ok and that he could eat sugar. This seemed really strange to me.
We have to be careful about how we approach this issue. He doesn’t like people meddling in his life and if we piss him off he may stop communicating with us which won’t be of any help to him. So we usually bring up one thing at a time, let him mull it over and then take action when he’s ready. It’s just so hard to do this when we live more than 2,000 miles away.
Since the complications of diabetes take years, decades, to develop, and since people with cirrhosis unfortunately don’t have decades to live, there’s really no justification for them to aim for anything close to normal sugar levels. In fact, cirrhosis can sometimes lead to an inadequate response to low blood sugar levels (since the liver is where sugar is made and thus is the source of sugar to counteract any low blood sugar levels). What this means is that not only is there is no benefit in aiming for tight sugar control in cirrhosis, there’s a real risk of profound, life-threatening hypoglycemia if you do. So, let him eat all the sugar he wants (well, be liberal, at least).
I should also point out that if his ammonia level is high and he is using lactulose, it’s almost certainly the case that his diet is restricted in protein. If you restrict sugar as well, there ain’t a lot left. Certainly nothing palatable. And, especially if the goal is a good quality of life for what’s left, why make the diet unbearable?
Karl, he’s not on a restricted diet. He eats whatever he wants, including lots of protein. He doesn’t listen to anyone’s advice and particularly doctors’. I guess you’re right. At his stage, nothing is going to make much of a difference. It’s all down hill from here. We’re just trying to make it as comfortable and painless as possible. Thanks for the advice.
A relative of mine was an alcoholic. I think you mention that your SO’s father starts drinking at 10 am every day. My relative was just never sober. He drank two bottles of rum a day. He would have a bottle beside his bed and if he woke at whatever time he would start having a rum and coke.
Eventually of course it caught up with him and he was rushed to hospital several times after collapsing. This was after he had started bleeding from the back passage (his clothes were stained). He never gave up drinking although I think he slowed down. He was about 57 when he died which was about 6 months after the diagnosis. However, I would suggest he would have been diagnosed with it years earlier if he had ever seen a doctor about it.
(Just as a disclaimer, he smoked pretty heavily as well. He told me he would have to vomit every morning due to too many cigarettes and grog. To this day I wonder if he may have had eosophigal cancer as well).
My dad drank himself to death, and while I can appreciate your desire to make the end as painless as possible for him, your energy would be better spent trying to help your SO through it instead.
It’s an ugly way to go, and there really isn’t any way to pretty it up. He might turn orange and lose his mind and bleed from the wrong places, even if you don’t like him at all it’s an awful thing to watch, and it can take a long time to finish.
I hate to be such a downer, but from my experience the best part of your story is that you live so far away. My best advice is to say your goodbyes and never go back. That might sound horrible, but in retrospect it’s what I wish I had done myself.
Sorry for bumping a new thread as my first ever post here, but this is the thread that brought me to Straight Dope via google and I don’t want to get lost in the forums trying to make a new thread. Hope nobody minds!
My brother who is about 50 has been an alcoholic for probably 30 years now. We are not close in age nor geographically and so my information is somewhat limited, as it is trickling down to me now through the family. I expect to know more soon, hopefully. Here is what I know about his situation:
He went to rehab earlier this year for 30 days to detox from alcohol. When he went in, he was quite overweight as compared to usual despite not eating hardly at all for weeks, and having no appetite. When he got out of rehab he went back home.
A couple of months later he went to the ER - I do not know what prompted this yet, he is not married and lives alone so it was not a loved one who brought him there, I do know that. They kept him for about ten days and drained 5 liters of fluid from his abdomen (which lost him 15 pounds right off the bat apparently), got him hooked up with a kidney specialist, and informed him that if they can’t figure out why the fluid keeps coming back then its going to be a real big problem. They eventually discharged him and he filled a half dozen or so medications. One comes in ampules that he injects into his abdomen twice daily. I cannot find any information online as to what this might be (I’ve only heard of medicines for MS that are injected in this manner until now).
This is all I know. I presume he is in end stage cirrhosis and that his kidneys are also kaput, based on what little I know. I hope he will reply to my repeated attempts to communicate with him but I fear he is in denial and also feeling bad about his life choices, though nobody in our family has ever made him feel that way. We do have a GREAT DEAL of very bad cancer in our family that tends to always metastatize all over the insides, but I presume his situation was caused by drinking.
I realize this is a post missing much information but I would like to be able to prepare myself for worst case. Right now based on the liver and kidney involvement I fear he may well have weeks to months, and not years, to live. I am not looking to feel better, I am looking for realistic information… which is why I came here. Many thanks to any information anyone can share with me regarding whether my presumptions on his diagnosis and mortality are correct (or is it morbidity? I always mess that up.)
I will tell you it is amazing how long end-stage liver failure can take, and how people can come back. I’ve known two people off the top of my head who were in the ICU for weeks and weeks-- somewhere between incoherent and comatose–and who ended up going home somewhat recovered. One quit drinking after that and is still alive seven years later. One hasn’t quit drinking and it hasn’t been that long, so who knows?
I guess what I am saying is that this can be an extremely long, disgusting, and erratic process and you should probably have your brain in the “long haul” mode, not the “bracing for the bad news soon” mode. In my experience.
I think that this hijack is minor, and semi-related, so here it goes:
Just for the sake of argument, say that one had cirrhosis similar to that noted by Manda JO, above. So, one of these people totally quit drinking, with proper weaning, and started working out, pumping iron and cardio, proper nutrition, etc… Can any of our med types give us a hint as to increased longevity/quality of life (how much physical change, i.e., lack of pain, etc…) one may experience?
Thanks.
Thank you for your replies. I will keep checking in to see if anyone else responds. This all takes some time to process, sorry for being so quiet after posting. I didn’t post and run though. Thanks again.
I am not a doctor but as it was explained to me for a family member, recovery from this or any disease is dependent on the individual and how much damage has been done (which also varies based upon the individual). The doctor explained it as a “straw” analogy. You can bend it to a certain point, and if you let up, it will pop back up to its normal position. Once you’ve bent it too far, it creases and will not return.
So, not being a doctor, but just hearing from a doctor, the lifestyle changes for your hypothetical patients can be anything from a total arrest of the disease to absolutely worthless. I know that doesn’t help, but if one of our resident doctors can confirm, I think that is the limit to our knowledge. We just don’t know and can’t quantity resiliency in the body of human beings.
I posted this back on October 15, 2013 (nearly 4 months ago):
Hi there again. I’m at a loss for how to read this situation due to the fact that my brother is no longer taking his medicines nor seeing doctors due to having no health insurance and being in debt already, and I’m unsure whether he has stayed sober.
He has malnutrition and doesn’t eat pretty much ever, but apparently does drinks nutritional drinks occasionally.
He hasn’t got energy to pull himself up stairs or much anywhere else, and is confused at times lately.
Now apparently he’s started occasionally having hallucinations and cold sweats with rapid heartbeat. As previously stated, he has had issues with ascites for some time, and when pressed for info he says his “liver and kidneys are messed up” and that he’s been “sick for a year now”.
Are these new developments with his health any kind of hallmark signs that help show the progress of his situation? I don’t know if he’s jaundiced at this time. I’m trying to help him out with his insurance situation now that I’m aware of it, but I’m not sure that he has much interest in medicine or doctors at this point regardless.
Thank you again for having such a fine and helpful community here, and for any commentary anyone can offer.
My brother and brother-in-law both died in their early 50’s from drug and alcohol related liver problems. You intervene with them, you try to take care of 'em, nothing helps and finally one day you realize all they ever really wanted was to die anyway. Alcoholism is a slow way of killing yourself you don’t have to take responsibility for. As time goes by you realize you didn’t lose them when they died but years before when they decided to drop back and punt on 1st down. How do we keep on loving these perfectly self centered people who offer absolutely nothing in return?
IAAMD who treats end-stage liver disease patients. And it’s hard to say anything definitive without knowing more, but altered mental status is a strong indicator that his liver is losing the ability to do its most core function: Clear the blood of toxins.
With proper evaluation and treatment, this might be stabilized and even possibly reversed a bit. Without it, the outcome does not look good, and people in this situation often decompensate and die quickly.