When is she likely going to die?
February 19, 2008 10:51 PM Subscribe
Calling all AskMe health care professionals. My acquaintance has been an alcoholic for at least two decades. She's in the hospital again, and I need realistic expectations about her survival. This is a long one, I'm afraid.
I tried digging the information out of the internet myself, but there are so many variables and I am obviously not trained for this.
She's 34 years old and has been drinking pretty much constantly for about 20 years. She has been in the hospital multiple times over the past five years. First diagnosis was cardiomyopathy. Second was congestive heart and lung disease. Last year, she was hospitalized again, went through DTs (seizures, hallucinations, etc) and was diagnosed with liver failure. She has continued to drink while taking whatever "liver failure medicine" was prescribed, unfortunately I don't know what specific one but it was a clear liquid, since then.
She went in again two weeks ago with terrible edema; her kidneys weren't working and no diuretic they tried would help her urinate; and they considered a liver biopsy, but her blood wasn't clotting properly. She did not have DTs this round. She tends to check herself out AMA as soon as she can manage, and that's what she did again last Monday evening. On Friday, an ambulance had to be summoned and she was on life support until Sunday morning.
She's totally denying the drinking, of course, even though we found the half-gallon jugs, yes plural, of vodka in her apartment (if you can call what we found an apartment still... dear god, it was awful). She's combative with the medical staff. She's paranoid and is convinced that the staff thinks she's done this to herself (duh!). She often has to be restrained, so that she won't pull out her IVs or remove other monitors. Her memory is rapidly deteriorating and she's manufacturing reality to suit herself about a lot of things.
Once she woke up, she invoked whatever clause guarantees her medical privacy to anyone, including her own mother. So we can't find out any further prognoses.
Here's the thing: She has a 10-year-old daughter. Steps are being taken to get the daughter out of this situation and to help her cope. She's in good care currently, but there is no other family in this state but the mother. Child services likely won't get involved, though, until this woman is released from the hospital.
Now that she's at least breathing on her own again, what are the realistic chances that she'll survive the hospital stay? If she manages to check herself out as soon as they transfer her to a regular room and resumes drinking as soon as she gets home, as is her usual behavior, how long might she live then?
I hope I don't sound cold here. A lot of folks have tried to intervene and none of us were the least bit successful. It isn't that we don't care, because we certainly do and it hurts. We just want to have reasonable expectations.
I tried digging the information out of the internet myself, but there are so many variables and I am obviously not trained for this.
She's 34 years old and has been drinking pretty much constantly for about 20 years. She has been in the hospital multiple times over the past five years. First diagnosis was cardiomyopathy. Second was congestive heart and lung disease. Last year, she was hospitalized again, went through DTs (seizures, hallucinations, etc) and was diagnosed with liver failure. She has continued to drink while taking whatever "liver failure medicine" was prescribed, unfortunately I don't know what specific one but it was a clear liquid, since then.
She went in again two weeks ago with terrible edema; her kidneys weren't working and no diuretic they tried would help her urinate; and they considered a liver biopsy, but her blood wasn't clotting properly. She did not have DTs this round. She tends to check herself out AMA as soon as she can manage, and that's what she did again last Monday evening. On Friday, an ambulance had to be summoned and she was on life support until Sunday morning.
She's totally denying the drinking, of course, even though we found the half-gallon jugs, yes plural, of vodka in her apartment (if you can call what we found an apartment still... dear god, it was awful). She's combative with the medical staff. She's paranoid and is convinced that the staff thinks she's done this to herself (duh!). She often has to be restrained, so that she won't pull out her IVs or remove other monitors. Her memory is rapidly deteriorating and she's manufacturing reality to suit herself about a lot of things.
Once she woke up, she invoked whatever clause guarantees her medical privacy to anyone, including her own mother. So we can't find out any further prognoses.
Here's the thing: She has a 10-year-old daughter. Steps are being taken to get the daughter out of this situation and to help her cope. She's in good care currently, but there is no other family in this state but the mother. Child services likely won't get involved, though, until this woman is released from the hospital.
Now that she's at least breathing on her own again, what are the realistic chances that she'll survive the hospital stay? If she manages to check herself out as soon as they transfer her to a regular room and resumes drinking as soon as she gets home, as is her usual behavior, how long might she live then?
I hope I don't sound cold here. A lot of folks have tried to intervene and none of us were the least bit successful. It isn't that we don't care, because we certainly do and it hurts. We just want to have reasonable expectations.
I don't have any concrete medical advice, but my father (a lifelong alcoholic and former drug user) died very suddenly two years ago under very similar circumstances (the edema, manufacturing reality, the whole thing). He was 49, and his health had been consistently dodgy and dodgier for a couple of years. He felt essentially fine one day, then what began with a severe backache ended in his passing less than a week later under pretty distressing circumstances in the hospital. It was particularly shocking because we sort of expected him to have a long, slow, alcoholic decline where everything built up over a course of time until finally it was all too much for his body to handle. Normally I wouldn't traffic in speculation and this kind of near fortune telling, but I would urge you to try and prepare for the fact that if the worst does come, it could come very quickly. I only wish I had better information, advice, or comfort to give you under such very difficult circumstances.
posted by mostlymartha at 11:24 PM on February 19, 2008
posted by mostlymartha at 11:24 PM on February 19, 2008
Response by poster: Thank you, clanger and mostlymartha, for sharing your experiences. Those do help, too.
I had forgotten to add that we're pretty sure she's been diagnosed with alcoholic hepatitis and/or cirrhosis, but we aren't positive. Also the malnutrition seems probable. She can't hold down real food when she gets like this.
posted by lilywing13 at 11:45 PM on February 19, 2008
I had forgotten to add that we're pretty sure she's been diagnosed with alcoholic hepatitis and/or cirrhosis, but we aren't positive. Also the malnutrition seems probable. She can't hold down real food when she gets like this.
posted by lilywing13 at 11:45 PM on February 19, 2008
I'm sorry about what you're going through. I was there once. Someone I loved a great deal spent their last years institutionalized because of chronic alcoholism and malnourishment (their brain was so damaged, they were unable to remember new events and were unable to care for themselves).
Give your acquaintance the love that you can. Alcoholism is a terrible disease.
If you can build up a connection with them, you may wish to ask about getting power of attorney to make medical decisions, or alternately, ask the hospital to do a psych evaluation to have them declared incompetent so that their mother can make decisions for them.
But frankly, this probably doesn't matter much. The moment they're no longer in the hospital, they're going to drink again.
The main goal, as I see it, is to make sure the 10 year old is taken care of . Talk to someone who knows more Child Services than I do before going this route, but I suspect if you asked Child Services to visit the alcoholic's home, they would place the child with the grandmother, and then the child could spend most of their time in what I presume would be a much healthier environment.
I wish you the best of luck.
posted by zippy at 1:00 AM on February 20, 2008
Give your acquaintance the love that you can. Alcoholism is a terrible disease.
If you can build up a connection with them, you may wish to ask about getting power of attorney to make medical decisions, or alternately, ask the hospital to do a psych evaluation to have them declared incompetent so that their mother can make decisions for them.
But frankly, this probably doesn't matter much. The moment they're no longer in the hospital, they're going to drink again.
The main goal, as I see it, is to make sure the 10 year old is taken care of . Talk to someone who knows more Child Services than I do before going this route, but I suspect if you asked Child Services to visit the alcoholic's home, they would place the child with the grandmother, and then the child could spend most of their time in what I presume would be a much healthier environment.
I wish you the best of luck.
posted by zippy at 1:00 AM on February 20, 2008
Your friend is, for all intents and purposes, dead. Definitely try to get a will of some kind signed designating who will take care of her child when she passes. You are certainly in no position to stop her drinking but you might get her to at least look out for the best interests of her child when she's gone. Good Luck.
posted by ptm at 1:29 AM on February 20, 2008 [2 favorites]
posted by ptm at 1:29 AM on February 20, 2008 [2 favorites]
pdm's advice seems harsh but true. It's unusual to get full cessation of alcohol abuse following a history of excess and denial as strong as you imply.
posted by singingfish at 2:41 AM on February 20, 2008 [1 favorite]
posted by singingfish at 2:41 AM on February 20, 2008 [1 favorite]
Social workers in the hospital should be alerted to the childcare situation - they can help with getting care in place before the mother leaves hospital.
posted by wayward vagabond at 2:45 AM on February 20, 2008
posted by wayward vagabond at 2:45 AM on February 20, 2008
I'm sorry lilywing. Alcoholism is described in AA literature as "the rapacious creditor" - which means that, if you are an alcoholic, it'll get you in the end.
It sounds as if your friend is an end stage alcoholic and there is usually no happy outcome for people who are this far gone. Even if people at this stage are able to stop drinking, sometimes too much damage is done and they die as a result of the damage they've inflicted on their bodies anyway. (A friend of mine, who died last Friday, is a case in point. By the time he got sober, about 8 years ago, his liver was so damaged by cirrhosis and hepatitis that he knew it would kill him eventually.)
There's no saying how long your friend might live. I've seen people drink, be hospitalised, go home, drink again, go back into hospital, on what seemed to be a never-ending loop and each time I'd think "this surely must be the last go-round" but they'd, well, not exactly bounce back, more like crawl back, and do it all over again. I have to say that every single one of the people I knew who did this died eventually, but usually months, sometimes years, after everyone expected them to, even when they hadn't a pick on their bones and could barely walk.
From the hospital's perspective, this woman is a nuisance and they'll want her out of there to free up the bed for another patient as soon as possible. So, yes, the likelihood is that she'll be sent home as soon as she's ambulatory, and of course the cycle will begin again. It could kill her in a few days, or it might be several more years.
As far as the daughter's concerned, if the grandmother is able to step up and take care of her, this will make Child Services' job a whole lot easier (provided the grandmother has no alcohol/drug/hooker issues herself, of course). Their resources are stretched, so if they can avoid having to use a foster family to place a child, they'll willingly accept a stable family member as carer for the child.
Perhaps the grandmother could do a pre-emptive strike - have the child live with her while the mother's in hospital and then apply for custody/residence when she knows her daughter's about to be discharged. It might help to take video/photos of the state of the home she was living in.
I'm sorry you're going through this. I feel for your friend - there but for AA go I - but the sad reality is that most alcoholics die of alcoholism and the only thing you can do is an exercise in damage limitation for her daughter, and for yourself.
posted by essexjan at 3:44 AM on February 20, 2008 [1 favorite]
It sounds as if your friend is an end stage alcoholic and there is usually no happy outcome for people who are this far gone. Even if people at this stage are able to stop drinking, sometimes too much damage is done and they die as a result of the damage they've inflicted on their bodies anyway. (A friend of mine, who died last Friday, is a case in point. By the time he got sober, about 8 years ago, his liver was so damaged by cirrhosis and hepatitis that he knew it would kill him eventually.)
There's no saying how long your friend might live. I've seen people drink, be hospitalised, go home, drink again, go back into hospital, on what seemed to be a never-ending loop and each time I'd think "this surely must be the last go-round" but they'd, well, not exactly bounce back, more like crawl back, and do it all over again. I have to say that every single one of the people I knew who did this died eventually, but usually months, sometimes years, after everyone expected them to, even when they hadn't a pick on their bones and could barely walk.
From the hospital's perspective, this woman is a nuisance and they'll want her out of there to free up the bed for another patient as soon as possible. So, yes, the likelihood is that she'll be sent home as soon as she's ambulatory, and of course the cycle will begin again. It could kill her in a few days, or it might be several more years.
As far as the daughter's concerned, if the grandmother is able to step up and take care of her, this will make Child Services' job a whole lot easier (provided the grandmother has no alcohol/drug/hooker issues herself, of course). Their resources are stretched, so if they can avoid having to use a foster family to place a child, they'll willingly accept a stable family member as carer for the child.
Perhaps the grandmother could do a pre-emptive strike - have the child live with her while the mother's in hospital and then apply for custody/residence when she knows her daughter's about to be discharged. It might help to take video/photos of the state of the home she was living in.
I'm sorry you're going through this. I feel for your friend - there but for AA go I - but the sad reality is that most alcoholics die of alcoholism and the only thing you can do is an exercise in damage limitation for her daughter, and for yourself.
posted by essexjan at 3:44 AM on February 20, 2008 [1 favorite]
Very sorry to hear about everything that's going on. Your acquaintance's ICU doctor (or whoever is managing her) can likely give you more information, because he has access to her lab studies, which really tell the most about how destroyed her liver is. The MELD Score (self-link) is what most liver doctors and transplant surgeons use to determine illness severity now, and it looks like there are several studies out there linking MELD score with mortality. (Note: she would not be a candidate for transplant at this point, because she continues to drink.)
You also mention that her kidneys shut down--in medicalese, that's called "acute renal failure," and she likely has some component of "hepatorenal syndrome," which basically means the kidneys shutdown if the liver shuts down. The treatment for both is proper fluid management and supportive care. I'm sorry to say that the 30-day mortality for acute renal failure is often quoted to me by kidney doctors at between 50-70%. (That seems high to me, but they know the data better than I do.)
Your friend likely has an altered level of consciousness, due to (we believe) the buildup of toxins that are usually cleared by the liver ('hepatic encephalopathy') and the kidneys ('uremic encephalopathy'). This is probably one of the big reasons she's combative, confused, etc.
It's so sad to hear that her child is having to be put through this. I would really recommend trying to talk to the patient advocate, or seeking out the hospital's ethics committee. People who are altered and encephalopathic are not themselves and are not competent to make medical decisions--they can't think straight. The alternative is to have the courts appoint a conservator if she won't or can't name a durable power of attorney of health care, but again, she could certainly die by the time it all gets worked out.
Purely my opinion--haven't gone through this with a patient of mine, so I'm not 100% sure about everything. (I'm not a doctor (yet), not your acquaintance's doctor nor is she my patient, and that's educational information, not medical advice.)
posted by gramcracker at 6:22 AM on February 20, 2008
You also mention that her kidneys shut down--in medicalese, that's called "acute renal failure," and she likely has some component of "hepatorenal syndrome," which basically means the kidneys shutdown if the liver shuts down. The treatment for both is proper fluid management and supportive care. I'm sorry to say that the 30-day mortality for acute renal failure is often quoted to me by kidney doctors at between 50-70%. (That seems high to me, but they know the data better than I do.)
Your friend likely has an altered level of consciousness, due to (we believe) the buildup of toxins that are usually cleared by the liver ('hepatic encephalopathy') and the kidneys ('uremic encephalopathy'). This is probably one of the big reasons she's combative, confused, etc.
It's so sad to hear that her child is having to be put through this. I would really recommend trying to talk to the patient advocate, or seeking out the hospital's ethics committee. People who are altered and encephalopathic are not themselves and are not competent to make medical decisions--they can't think straight. The alternative is to have the courts appoint a conservator if she won't or can't name a durable power of attorney of health care, but again, she could certainly die by the time it all gets worked out.
Purely my opinion--haven't gone through this with a patient of mine, so I'm not 100% sure about everything. (I'm not a doctor (yet), not your acquaintance's doctor nor is she my patient, and that's educational information, not medical advice.)
posted by gramcracker at 6:22 AM on February 20, 2008
Also--doctors are not prognosticators. We can certainly take a group of people with similar disease profiles and average out their survival time and say, "Average mortality: blah," but when it gets down to individual patients, we just can't say. That's why doctors are very avoidant when people ask about prognosis--we just don't know, until death starts to set in, with changes in breathing and such--then we know there's usually hours to days left at most. From an awesome Hospice attending of mine:
It’s like weather versus climate. I can tell Californians that it’s probably going be sunny there, and I can tell Alaskans it’s probably going to be cold there, but if you ask me to tell a particular town on a particular date what the weather’s going to be, I might as well just pull it out of a hat. Until it gets very close to that date, I really can’t say if it’s going to rain or going to be sunny.posted by gramcracker at 6:27 AM on February 20, 2008
So sorry for your pain.
To answer your questions, it's hard to say. Being only 34 adds some unpredictability. But it sounds like she's in pretty bad shape. A family member (age 55) was in a similar situation, but stopped drinking and snapped back. My point is, alcoholics will confound you at every turn, including the manner and time of their eventual death. Good luck.
posted by gjc at 6:38 AM on February 20, 2008
To answer your questions, it's hard to say. Being only 34 adds some unpredictability. But it sounds like she's in pretty bad shape. A family member (age 55) was in a similar situation, but stopped drinking and snapped back. My point is, alcoholics will confound you at every turn, including the manner and time of their eventual death. Good luck.
posted by gjc at 6:38 AM on February 20, 2008
I've taken care of many similar patients. Your friend may as well already be dead. Say your goodbyes.
posted by ikkyu2 at 7:15 AM on February 20, 2008
posted by ikkyu2 at 7:15 AM on February 20, 2008
Also--doctors are not prognosticators. We can certainly take a group of people with similar disease profiles and average out their survival time and say, "Average mortality: blah," but when it gets down to individual patients, we just can't say.
This, with all due respect, is a grave error. Prognosis is one of the most important duties that a doctor performs. In many cases it is the most important. That it is difficult and fraught with error doesn't make it any less necessary or important.
posted by ikkyu2 at 7:17 AM on February 20, 2008
This, with all due respect, is a grave error. Prognosis is one of the most important duties that a doctor performs. In many cases it is the most important. That it is difficult and fraught with error doesn't make it any less necessary or important.
posted by ikkyu2 at 7:17 AM on February 20, 2008
Your friend likely has an altered level of consciousness, due to (we believe) the buildup of toxins that are usually cleared by the liver ('hepatic encephalopathy')
Nonsense. What toxins are these supposed to be? Why can't these toxins be cleared by dialysis, or in fact identified in any way despite hundreds of attempts over decades? Hepatic encephalopathy is not a toxic encephalopathy.
posted by ikkyu2 at 7:22 AM on February 20, 2008
Nonsense. What toxins are these supposed to be? Why can't these toxins be cleared by dialysis, or in fact identified in any way despite hundreds of attempts over decades? Hepatic encephalopathy is not a toxic encephalopathy.
posted by ikkyu2 at 7:22 AM on February 20, 2008
Nonsense. What toxins are these supposed to be? Why can't these toxins be cleared by dialysis, or in fact identified in any way despite hundreds of attempts over decades? Hepatic encephalopathy is not a toxic encephalopathy.
Well, to be fair, there are a few different theories and not everyone agrees as to the etiology of hepatic encephalopathy. I'm sure gramcracker is referring to endogenous toxins- most notably ammonia. And speaking of the limitations of hepatic dialysis, I came across this interesting post a couple weeks ago.
Back on topic.. sorry to hear about your friend. As many others here have said, it doesn't sound very hopeful. You could ask someone more familiar with her case if having her committed to a psych/sobriety program would be in her best interest. With family intervention that does not necessarily need to be voluntary on her part.
Good luck.
posted by sero_venientibus_ossa at 8:10 AM on February 20, 2008
Well, to be fair, there are a few different theories and not everyone agrees as to the etiology of hepatic encephalopathy. I'm sure gramcracker is referring to endogenous toxins- most notably ammonia. And speaking of the limitations of hepatic dialysis, I came across this interesting post a couple weeks ago.
Back on topic.. sorry to hear about your friend. As many others here have said, it doesn't sound very hopeful. You could ask someone more familiar with her case if having her committed to a psych/sobriety program would be in her best interest. With family intervention that does not necessarily need to be voluntary on her part.
Good luck.
posted by sero_venientibus_ossa at 8:10 AM on February 20, 2008
This is a paper which shows efforts at predicting the 30-day mortality for people in her position. This is a calculator for the MELD score that they're talking about. There's a lot of material on how to do this, but I suspect that you won't have access to the exact lab values. If you look at some of the tables, the kind of liver dysfunction that you're observing is associated with a large risk of short-term mortality. Prepare to deal with this now.
posted by a robot made out of meat at 10:49 AM on February 20, 2008
posted by a robot made out of meat at 10:49 AM on February 20, 2008
Response by poster: OP here.
I was going through and marking best answers, but I found myself marking them all.
Thank you all very much for all of the information.
It really does help.
posted by lilywing13 at 3:36 PM on February 20, 2008
I was going through and marking best answers, but I found myself marking them all.
Thank you all very much for all of the information.
It really does help.
posted by lilywing13 at 3:36 PM on February 20, 2008
This thread is closed to new comments.
Aside from the alcohol as cause - the alcohol induced liver failure, the edema, kidney failure, mental impairment, and low clotting factor all point to cirrhosis. Given the long history of excessive drinking you describe would back that up as well. Cirrhosis is end stage liver disease and is terminal. Transplantation is the only option, which usually requires 6 months of sobriety to even get listed for those whose liver failure is due to alcohol abuse.
If her drinking is such that it is her only intake (i.e. no food, which seems likely here) she is also probably severely malnourished.
I've had 1 friend ask me about a similar situation only because his friend was in a similar situation and I happen to know a bit about severe liver damage.
In that case, the person was mentally impaired with liver damage and malnourished when admitted. The mental thing is called Encephalopathy - due to liver failure and ammonia buildup that affects the brain. The person was released to a rehab care facility to try to build up nutrition and help liver recovery.
In researching - I found an article studying cases similar to theirs which indicated decent outcome (after 30+ days) on cessation of all alcohol and the ability to establish proper nutrition again. The article mentioned from its data a high <3>
The friend of the person who asked me for info died about 10 days later from liver failure.
Given your friend's back to back episodes, and without any intervention on their own part to stop drinking, given the amount they are seemingly drinking (multi half gallons of vodka) I would take a guess at 30-60 days if they manage to get themselves out of the hospital to continue as they have. 30-60 is probably being generous, I'm sorry to say.
Perhaps she will decide to help herself and it isn't too late...
posted by clanger at 11:23 PM on February 19, 2008