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

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.

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."

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

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..........

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.

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

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

thanks Rick for all ur info... and hope u get helped by it...

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!