Hospice Reducing Number of Drainings; Patient Miserable. Please help.

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Michelle M
New Member


Date Joined Dec 2009
Total Posts : 4
   Posted 12/8/2009 8:23 PM (GMT -7)   
I've read this forum for many months as the neighbor and friend of an end-stage liver disease patient who lives next door. He lives alone and I check on him a lot and try to be an advocate and help him as much as I can. He stopped drinking cold turkey 7 years ago when first diagnosed, but by then it was too late. He's been denied for transplant for various reasons and is now -- after numerous hospitalizations and crises, in hospice care at a local facility as he lives alone and they (wisely) wouldn't release him home. He's awake and lucid, his pain is reasonably well controlled, but his ascites -- which had been getting drained once a week and possibly more often while in hospital, is getting out of control.

The hospice doctor refuses to drain him more than once every two weeks. Even then, he only takes a few liters.

He has a protruding hernia from the pressure. He cannot eat. He looks emaciated; is all skin and bones but for the belly.

The doctor says that he does not want to be "aggressive" is draining him as it removes too much protein, which could cause unconsciousness. Considering his level of consciousness is good and has been all along, I'm wondering whether this is reasonable. The lactulose appears to be controlling his ammonia levels. He is on Lasix. I suspect he has virtually no liver function left.

Part of me suspects this is just standard hospice care, where they really don't want to do anything much beyond giving you morphine. I had them stop the Ativan (an anti-anxiety drug) as his liver didn't appear to be processing it and he was unable to finish a sentence while on it. In 24 hours he could talk again. Morphine seems ok at controlling pain while not turning him vegetative.

Have any of you had loved ones in similar situations? Did hospice refuse to regularly drain them? Is this an accepted standard of care? I want to believe the doctor but can't shake the feeling that they just don't want to bother.

Thanks in advance and best wishes to you all.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 12/8/2009 9:27 PM (GMT -7)   

Michelle, welcome to the forum.  I'm glad you finally decided to post.  I don't have a definitive answer for you, but perhaps someone else will.  However, when Hospice gets involved, their care is supposed to be palliative; i.e., comfort measures only.  Perhaps the physician feels that every two weeks is sufficient to meet that criteria, but anything more would be considered too aggressive.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


Michelle M
New Member


Date Joined Dec 2009
Total Posts : 4
   Posted 12/8/2009 9:36 PM (GMT -7)   
Hi Connie. Thanks. I know it's palliative only. I know, for example, that if he develops varices, all they will do is make him comfortable, rather than band them. However, paracentesis IS about comfort. (with perhaps the slight curative vs. palliative benefit of reducing the chance of infection.) He is so grossly distended that he can barely eat, move, or breathe. It's not expected that it's going to save his life. Only that it will make whatever time he has left somewhat bearable for him. They promised they would do it for him, vaguely assuring they would do it as needed.

I fear that they are actually hastening his death by not doing it, or by drawing out the length of time between drainings drastically.

When a person is in bad enough condition to require weekly (or more often) drainings, you do not just suddenly stop and make them wait two weeks -- even worse, when their last drain only was a few liters "for fear of removing too much protein." (???)

I feel the doctor is "doing as little as possible."

shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 12/8/2009 10:37 PM (GMT -7)   
Michelle, I have worked with hospice in the past and I know they do not treat an illness. I would argue the point of not doing drainings, I think that would fall under a comfort measure as they are to alleviate discomfort and allow a person to die with dignity. Please make a call to the co-ordinator for hospice in your area. The guidlines are not to hasten a death or prolong life. I do know appropriate drainings were allowed for a friend of my brothers in the same situation, everyone was told no life saving measure could be done but Taps were okay as a comfort measure and he wasnt allowed to get to the point of being uncomfortable.
When I started counting my blessings my whole world turned around.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 12/8/2009 10:38 PM (GMT -7)   

Michelle, you may be right.  See if you can make an appt. to talk to or see the Director of the facility he is in or a patient advocate, if they have one.  You need to express your concerns about the way your friend is being treated (or not treated in this case.)

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2350
   Posted 12/8/2009 11:35 PM (GMT -7)   
Excellent points... and info for those who might go through this also...

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 12/8/2009 11:42 PM (GMT -7)   
Hello Michelle and welcome to HealingWell. So sorry that your friend is having so much difficultly. And that you have to fight for his comfort. I guess different docs have different thoughts on what's comfort and what's not.

Or maybe the doc isn't comfortable draining anymore than a couple of litres. Maybe it's not his expertise.

Take care......thoughts and prayers..........
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2350
   Posted 12/8/2009 11:56 PM (GMT -7)   
Yeah, you go girl... fight for his comfort!!!

Michelle M
New Member


Date Joined Dec 2009
Total Posts : 4
   Posted Yesterday 7:17 AM (GMT -7)   
Thanks so much, everyone, for your help. Rick, you make an excellent point about the albumin. He is in a hospice setting (in a rehab/nursing home environment) where they will NOT place an IV line to infuse albumin. There may also be a question of skill in doing the paracentesis. He's had it done twice during his stay there. The first doctor who did it did a great job and drew off a LOT ... somewhere around 10 plus liters. My friend felt great afterward for a good while. However, the next doctor, who most recently did it and who proposes to be the one to do it "mildly" from now on, only took off about three liters. It was agonizing, took forever, provided little relief. He said the area he tapped formed a hematoma and apparently he didn't try a different area. I think he is not particularly skilled in paracentesis. His proposed "solution" is to simply give more pain meds and oxygen, essentially just letting him die. He's too miserable to eat.

jenny64
New Member


Date Joined Apr 2009
Total Posts : 8
   Posted Yesterday 10:24 AM (GMT -7)   
My husband just went with Hospice for ESLD. I chose this Hospice because they allowed paracentesis for "comfort". My husband had been getting this done twice a week, 6 liters at a time removed--followed by infusion of Albumin. Now he is getting full and asking to be drained. His doctor is first trying Lasix and Aldactone (he had been taken off of these in the past for problems with his kidneys)--once we try these, if they don't work--we are hoping for an order to have the paracentesis. We were told that they would not be done nearly as frequent as twice weekly, and no albumin. I wish they could just do it as often as we liked--but the "hospice philosophy" is very different then pursuing the transplant. My husband also takes Vistaril for "agitation"--we tried Ativan and he was as you say--"not finishing a sentence"--the Vistaril seems to work great so far. My husband has no pain at this time--we are just starting Hospice--only been with them for a week. It is very sad--you are sweet to look in on your friend and be an advocate. I can barely manage to do this for my husband--I want to collapse most days but just keep doing what needs to be done!
Jenny

shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted Yesterday 11:26 AM (GMT -7)   
Jenny, So sorry about your husband, I know how hard it is to be the caregiver. Mine had to take care of me after major kidney surgery and he used to tell me he would rather be the sick guy than the caregiver. I took care of him for many years till he passed, hang in there!
Sue
When I started counting my blessings my whole world turned around.


jenny64
New Member


Date Joined Apr 2009
Total Posts : 8
   Posted Yesterday 12:09 PM (GMT -7)   
Oh, how sweet of your husband to tell you that! It is all so sad for all involved!
Thank you for your note!

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted Yesterday 4:06 PM (GMT -7)   

Rick, it is my understanding that Michelle's friend is in a hospice inpatient facility, so not able to just have him zipped away somewhere else.  I'm not sure about hospice facilities, but I know that nursing homes generally have one doctor, who is the Medical Director.  They are not specialists and usually have other nursing homes to visit, as well, so they're not in one place all the time.  Generally, unless there is an emergency, they only see patients 1-3 x a week.  In her friend's case, and from what has been posted, it seems that the physician is not comfortable with paracentesis and considers it an aggressive treatment if done too often.  Hospice, by its very nature, does not act aggressively.

Nevertheless, I think Michelle should speak with the Director of the facility, a patient advocate, or even a nursing supervisor, since the patient in question is so uncomfortable.

Hugs,

Connie



hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

Post Edited (hep93) : 12/10/2009 2:47:37 PM (GMT-7)


worriedgirl
Veteran Member


Date Joined Apr 2009
Total Posts : 1130
   Posted Yesterday 4:57 PM (GMT -7)   
my mom had ascities and they didnt want to do t he parencetisis too much because of the risk of infection/
The only person who can make you happy is you. Be your own self and love who you are because each and every one of you are wonderful for who you are


arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2350
   Posted Yesterday 5:32 PM (GMT -7)   
thanks Rick for all ur info... and hope u get helped by it...

Michelle M
New Member


Date Joined Dec 2009
Total Posts : 4
   Posted Yesterday 11:55 PM (GMT -7)   
Jenny, I wish your husband the very best during his hospice stay and hope they will take care of his paracentesis needs. Thank you for the Vistaril suggestion. I've known another ESLD patient with a similar reaction to Ativan...positively vegetative after about 24 hours.

I do know the doctor has some very legitimate concerns regarding infection/protein loss, etc. However, in view of the hospice/nursing home setting, I'm more inclined to think they just don't want to do it. They could do small taps weekly. I actually worried this might come to pass while he was in hospital, prior to being admitted to hospice. I asked them about whether they'd still be doing it and they were really evasive; instead of actually answering, they'd say stuff like "Oh don't worry, we'll make sure he's totally comfortable..." I'm realizing now that could have been interpreted as "No."

Family members have called Hospice director and await a call-back.

Rick, due to this being a non-hospital setting, there's no guided imagery, just a GI doctor with at bedside.

During my visit tonight I learned they are switching from Lasix to a different diuretic so I'm hopeful that will help while we work on the issue of getting some relief with at least a small paracentesis.

Mizzmo
New Member


Date Joined Dec 2014
Total Posts : 1
   Posted Yesterday 6:26 PM (GMT -7)   
Hello everyone! I have worked with hospice for over five years and I am a certified hospice and palliative nurse. The hospice I worked with did perform paracentesis because we considered this procedure a comfort measure for our patients. The procedure helps to relieve pressure to decrease pain and improve breathing, leading to less discomfort for patients. However, some hospices considered this an aggressive measure and do not perform any paracentesis. Actually 3 out of the 4 agencies in my area do not perform this procedure and this makes me frustrated at times. Patients with ESLD usually require paracentesis and as their disease progresses, the more often and frequent the tapping becomes. I would start out scheduling my patients to have one every month, then it usually led to twice a month and then every week. But, considering that the condition is terminal, the treatments usually begin to become futile and you will notice that a tap will begin to have less positive effects and fewer benefits because the fluids begins to come back almost immediately. So, often families have to decide if the paracentesis are worth it. With end stage liver disease, protein levels (albumin) is very low and you need this for the fluid to stay in the vascular space and with low levels, the fluids shifts and third spaces causing ascites. You also have to be careful, because pulling off too much fluid can cause hypovolemia and patients can develop shock, which causes even worse symptoms. When I worked with hospice, I would always schedule as many paracentesis as possible, but they become non-beneficial as the disease progresses. This is the point when you manage the symptoms that come along with the pain, shortness of breath, fluid overload and discomfort. This is where the goals of treatment really become more of a palliative approach. We used morphine, dilaudid, and fentanyl a lot for pain which also helps with breathing. Oxygen and a hospital bed to keep the head of the bed elevated work very well. Lasix and spironolactone are diuretics of choice. Breathing treatments can also be beneficial. Ativan and Vistaril/Hydroxyzine are also good for itching and anxiety associated with this disease process. They may make patients have a side effect of drowsiness in the beginning but this subsides as patients build a tolerance after a few doses. At times, we even had a tenckhoff catheter placed into the peritoneal cavity to drain fluid at home as needed, without having a tap performed. The whole point is to do what it takes to make the patient as comfortable as possible and give them the best quality of life possible in the short amount of time they have. I am 31 years old, but lost my mom to cancer and my aunt to end stage liver disease. It is very difficult to see a loved one go through a terminal illness and the dying process. I am very passionate about this subject and I am studying for my nurse practitioner and have even looked into being able to perform taps at bedside when I return to my hospice career. If you have any more questions, I would be glad to answer. I hope this information was helpful, thanks and my prayers are with you all!

themiz
Forum Moderator


Date Joined Feb 2013
Total Posts : 1891
   Posted Yesterday 6:59 PM (GMT -7)   
Mizzmo, Welcome to the Hep forum. We are those with liver disease and those who love them. My husband is the one with liver disease and he is now on the transplant list.

You have posted to a thread that is 5 years old. The OP has not been seen on our forum since 2009. It appears there is some glitch showing the Dec. posts from previous years as if they are this month. I am sorry you were confused by this.

Do you have liver disease or do you have a loved one you care for that does? If so, please feel free to start a new thread and more people will see your post. Do check out the forum rules and the Hepatitis Resource sticky.

I will be locking this thread now. Sorry for the confusion with this glitch. Big Hugs
themiz-Forum Moderator-Hepatitis
Wife of themister, a fine man living with ESLD.
Eradicated Hep C GT3a SVR July 2012-TIPS w/HE January 2013-Transplant list Mayo AZ-July 11 2013 MELD14

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.” Kahlil Gibran
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