October 13, 2011 11:39 AM   Subscribe

My mother's liver is failing, but nowhere near as fast as expected. She has been in home hospice care for two and a half months. My aunt wants me to take her to the doctor but I feel like the physical toll on my mother outweighs any probable benefit. Am I doing the wrong thing? What do I tell my aunt?

My mother has been fighting a six-year battle with metastatic breast cancer and I've been her primary caregiver throughout the ordeal. She went back into chemotherapy this year as her liver tumors were growing again.

At the end of July, she was done with Taxol and had had a peritoneal catheter placed to manage her ascites. I took a much-needed break leaving her under the care of another family member. When I returned home I found that she was basically comatose. She was stabilized in the ICU and we stayed in the hospital for several days. Our oncologist (a man we trust and who has provided excellent care) said they could keep her alive for months but that it would be "inhumane." He said she probably had hours, not days, to live.

We opted at that time to bring her home under hospice care. She had been administered lactulose in the hospital. That allowed her to wake up and brought her some awareness of her situation.

After a couple days her siblings arrived in town. I was exhausted and happy to have some help. One of her sisters is an RN and was a huge help. Her sisters helped feed her and keep her clean. They got my mother out of bed almost every day, sitting her in our recliner. By the end of their week-long stay my mother seemed better, still weak but recovering.

Since their departure it has been a roller-coaster ride. I tried to keep my mother moving and get her out of bed, but she often didn't have the strength to manage. She would have days of awareness and alertness. We would work up the strength and will to get out of the house; a few times we made it into a couple stores she enjoyed (I pushed her in a wheelchair) and she even managed to get a facial. In the days following our excursions my mother was exhausted and it was hard to get her to swallow any food. There have been a few points over the last two months where I was fairly certain my mother was close to the end, when she couldn't drink or wake up for a day or two.

She displays many signs of advanced liver disease. At this point it's been about three weeks since my mother displayed any true lucidity, and when she was clear-headed it was accompanied with periods of confusion. She often thinks it's several years in the past and sometimes she sees things that aren't there. She has been sleeping 14-18 hours a day, and when she is awake she doesn't usually talk. Sometimes she wakes up at about 11:30PM and is unable to sleep, typically she is irritable but also more expressive and communicative than any other point during recent days. She is not very jaundiced. Her ascites is not very bad but it is consistent. I don't know if it's because of her relatively low fluid intake or if her liver is improving. About ten days ago I requested a prescription for lactulose and while she still seems confused, my mother seems to be awake a little more often.

For a month or so my aunt (the non-RN) has been asking me to take my mother to a doctor. It's a very difficult request for me. The hospice company won't do a blood draw to test her liver. If I drove my mom to a hospital/doctor it would be a very physically challenging ordeal. Her world-class oncologist said she was at the end of her battle. Though she has had periods of improvement, her condition has steadily trended downward since we returned home. I don't want my mother to die, but I feel like some of my family members' expectations are unrealistic.

I feel awfully guilty. She asks me 4-6 times a week and I avoid the question. I don't want to take my mother to a hospital, not because I don't want her to get better but because I believe the cost to my mother's energy and comfort is higher than any probable reward. Many members of the family hope for and expected my mom to fully recover. I would love my mother to recover her strength and lucidity but I also would rather avoid causing her the significant amount of pain and discomfort that the trip would entail, not to mention the days of exhaustion that would follow. I'm not aware of any treatment available for her condition, and I'm not sure what blood tests would do for my mother.

I don't know how to handle the issue with my aunt. My dad supports my decision so far, but there is a reason I've got the MPOA. Unfortunately my mother did not complete advanced directives or a living will, and we only vaguely discussed what she wanted me to do because she wasn't ready to talk about it. Her condition changed rapidly and unexpectedly, so I'm flying by the seat of my pants and trying to do the best thing for my mother while respecting what I believe she would want.

I realize the decision is ultimately mine, but I would like some advice. Do you think I'm doing the wrong thing? Does anyone ever recover from this stage of liver disease? How do I handle this issue with the family members who disagree with me? Agh.
posted by polyhedron to Health & Fitness (16 answers total) 1 user marked this as a favorite
Best answer: Can you call her doctor and talk through the possibilities? Find out what such a blood test might show, and what would be done about various outcomes. You say "I'm not aware of any treatment available for her condition, and I'm not sure what blood tests would do for my mother." -- so find out for sure if this is true. If it's not true, make a decision -- before you do anything else -- about exactly what you would do if the blood test came out a certain way. If you wouldn't do anything, if there aren't any treatments that are worth it, than the blood test is not a good idea. If there is a possible result that would lead to you doing something, then perhaps it is worth it, but talk to her doctor and find out the real options before bothering to test.
posted by brainmouse at 11:44 AM on October 13, 2011 [15 favorites]

Brainmouse's advice was exactly what I came in here to post. In addition, I'd suggest that you get some support for yourself--there are online caregiver support groups, and the hospice may employ or be able to suggest a local social worker or therapist with experience with exactly this situation.
posted by animalrainbow at 11:47 AM on October 13, 2011 [3 favorites]

polyhedron, I am sorry you are going through this. I think you are doing the right thing if you feel that you are doing what your mom would have wanted for her care. I don't know your mom, but I bet that having you take such good care of her at the end of her life would make her very proud. Sometimes family members think that pushing for every possible medical treatment is the best way to show that they love someone. It is very hard to choose not to keep pushing because it means acceptance that the person you love is dying. If squeezing every last second out of life, regardless of the cost in physical or emotional pain, or the potential lack of dignity at the end, is what your mom would have wanted, you would be within your rights to honor that. But you are doing what I would do if I were in your position.

By the time a person exhibits signs of liver failure, most of their liver tissue has to be non-functional. This is not something you can recover from - it can only be managed. Having a palliative care physician come and do a consultation might be helpful in determining what your goals of care are and how they could help you achieve them. If this is available I strongly recommend that you do it with as many family members present for a 'family meeting' as possible.

On another note... have you considered respite care? Not sure if you need it but what you are doing sounds really, really tough.
posted by treehorn+bunny at 11:50 AM on October 13, 2011 [2 favorites]

I also came in to say that you need to ring your mother's oncologist's office and request a call back. Then tell your aunt you are doing exactly as advised.
posted by DarlingBri at 11:51 AM on October 13, 2011 [2 favorites]

So sorry that you are going through this. Have you tried asking your sister what she thinks might happen as a result of that doctor's visit? Because if she says something like, "Mom will get better," you can reply with, "I'm sorry that we all have to acknowledge this difficult situation, but Mom has end-stage cancer. She will not recover. She is dying." Your sister just may not have thought this through to its logical conclusion.

And can the RN sister get involved in this? Maybe you can ask her to talk to the non-RN sister for you?
posted by BlahLaLa at 11:55 AM on October 13, 2011 [1 favorite]

Best answer: To be a little more clinical and less emotional, I would add: although you cannot recover from liver failure, you can recover from hepatic encephalopathy, which is the confusion that results from having elevated ammonia levels in liver failure. Lactulose dosing can be changed to help improve the confusion and sleepiness. Many people who have just liver failure to deal with are able to recover fully from hepatic encephalopathy on the right medical regimen (until the next time it happens again, at least - it keeps happening until they get a liver transplant).

Your mom has more than just the liver failure though - she has a terminal cancer diagnosis and that's going to be affecting her body in many ways. So any advice that applies only to liver failure and hepatic encephalopathy may not address your mom's problem fully - that's why getting a consultation from the doctor would help you to get more information that would help you to guide your care decisions.
posted by treehorn+bunny at 11:57 AM on October 13, 2011 [4 favorites]

You might also ask the doctor to speak with your aunt directly so you are not caught in the middle trying to translate. This would give her a chance to ask questions of someone other than you, and perhaps give her more acceptance of where your mom is really at right now. Take care of yourself - you're doing the best you can in a very difficult situation.
posted by judith at 12:00 PM on October 13, 2011 [4 favorites]

It sounds like you're doing exactly the right things, polyhedron. It takes courage to face the fact that nothing more can be done. And I agree that you should call the doctor and use what he says to get your aunt off your back.
posted by WorkingMyWayHome at 12:01 PM on October 13, 2011 [1 favorite]

It sounds to me that you are doing exactly the right things. You might want to consult with the Hospice folks regarding this, they have much experience in advising care givers as to how to deal with other family members. They should have a social worker on staff who can help you.
posted by HuronBob at 12:10 PM on October 13, 2011 [2 favorites]

Have you had any kind of health professional visiting your mother at home? A visiting hospice nurse or something like that? If so, what does he/she think? If not, look into it! Your aunt might feel more comfortable if she believed that your mother was being medically supervised, and who knows, there might even be something that could be done to improve her quality of life.

This must be an incredibly tough and it's not what you expected; if there are any hospice resources you can take advantage of, you should go for it.
posted by mskyle at 12:17 PM on October 13, 2011

Best answer: My father had Hepatitis C and, before he died, he suffered from hepatic encephalopathy. Lactulose helped the first time he fell into a coma, he recovered fully and was incredibly lucid for about a month (though always declining in mental acuity) until the coma recurred and he finally passed. He did not have cancer, just advanced liver disease.

Tell her oncologist what's going on and follow his lead. I am so sorry. In my experience, the first bout of lucidity was amazing (because despite the chronic liver disease, no one had connected his degenerating mental state and confusion to high levels of ammonia in his blood) but was not repeatable. The encephalopathy is a symptom, not a cause. On the one hand, if the idea of doing something concrete for your mother is appealing to you, more lactulose could, possibly but not even close to certainly, do some good. On the other hand, if, after confirming with the oncologist that you are both comfortable with the diagnosis of encephalopathy and see the aggressive treatment of her liver as palliative at best, then there is no reason for more tests and you should keep doing what you're doing.

Be kind to yourself and that includes telling your aunt that you're making the best possible decision you can.
posted by lydhre at 12:37 PM on October 13, 2011

You, or someone like your RN aunt should explain the hospice philosophy to your questioning aunt. Many people don't realize that it means comfort care and not aggressive medical treatment.

I'd also talk to the visiting nurse and the social worker. It's hard enough to take care of someone at the end of life without others questioning your decisions. Natural that she would be wanting to do something because it's very difficult to accept.

If it's too hard for you, ask the social worker and/or doctor to explain to your aunt. No one can say for sure exactly the moment someone with a terminal disease will pass on, but someone needs to gently explain that they don't put people under the hospice program unless they have a diagnosis of less than 6 months to live.

Sorry you are going through this, your mom is lucky to have you.
posted by Marie Mon Dieu at 12:56 PM on October 13, 2011 [1 favorite]

Yes, please call her doctor and ask if he would please explain the situation to your aunts.

And please, if you haven't already, please arrange to have a home health aide come in to help you take care of her: it won't do either of your parents OR you yourself any good if you run yourself into the ground! Even just having someone come in two or three times a week would help; it'll let you take a walk or a nap or take your car for an oil change, and just give you a chance to BREATHE. It's a really tough job you're doing for your mom (I went through it with my own mother: I understand all too well!); accepting paid help to do it does NOT mean you care about her any less. Please take care of YOU, too.
posted by easily confused at 4:00 PM on October 13, 2011

Polyhedron I'm so sorry you're going through this. I agree with everyone else who says that you're doing a very kind and generous thing in taking care of your mom. Hospice should be able to help you with both some respite care, some medical help at home and help talking to your aunt. My mother-in-law died a month ago and we're still getting support from our local wonderful hospice, support I was unaware of the existence until they checked in to see how we were doing. The hospice you're dealing with will more than likely have a social worker who can help talk to your relatives who are still hoping that your mother might miraculously recover.

Take care of yourself - there's very little as stressful as the situation you're in and it's hard to predict how long it will be. It's better to have some breaks than to wind up physically and mentally totally spent when your mother dies. Your difficult chores won't instantly be over then either. Having been through this with my mom as well as mom-in-law all I can add is I'm sorry - it's awful to watch someone you love going through this.
posted by leslies at 5:10 PM on October 13, 2011

Response by poster: My aunts and uncles came into town and there was no drama, just acceptance. Lots of angst on my part for nothing.

We had communicated with our oncologist's office early and I had talked with several nurses including a family friend who runs a breast cancer support group and has seen a lot of people through their journey. There really wasn't anything to do.

My mother peacefully passed away this afternoon with her husband and myself at her side. Thanks for the help guys, it was a relief.
posted by polyhedron at 8:45 PM on October 27, 2011

I'm very sorry for your loss, and glad that the family came together for you and for her in the end. You did a truly great thing in being her caregiver through a very tough time.
posted by brainmouse at 10:05 PM on October 27, 2011

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