Life Support Issues/mother with cirrohsis of the liver.
QUESTION: My mother has been diagnosed with Stage 4 cirrhosis of the liver and stage 3 kidney disease. She has NEVER drank and has always taken care of herself after having cervical cancer at 26. She is now 75 years of age. In the course of about 6 months she went from being self sufficient and mobile. Over the past couple years she grew more tired and slowed down but never quit. In the last 4 months she has been hospitalized with various issues 5 times. She has had to have abdominal fluid removed at least 1 time per week in the last 6 weeks and sometimes 2x a week. She has no body control and a lot of abdominal pain. If she fails to take the medication to remove the ammonia in her system she becomes disoriented and confused. She has no appetite and only eats a bit or two each meal. She coughs a great deal and has so many bruises. Her kidneys have little to no output and a serious odor and her stool which is frequent due to the medication for ammonia is always very dark. She has become very quiet an no interest in anything. She tried a rehab center to try to regain some strength to become a little more independent but that failed. With this last hospital visit the doctor released her even thou there was little to no urine output and told her to go home to her "puppy" which she had not seen in a month.They refuse to give us a prognosis. We desperately need some guidance and some kind of idea of what we are to expect and how long she might suffer with this. She is completely dependent on her 3 daughters for all of her care. Please give us an idea of what to expect. Will she go sudden, will she suffer a great deal, but most of all will you give a best guess prognosis so we have an idea of how much time we have to get some of her wishes fulfilled. PLEASE help us to get prepared for this.
ANSWER: I am so sorry about your mother's decline. She did nothing to deserve it which makes it harder still to deal with. Her providers may be reluctant to give you a prognosis because they are not sure how long she may last.
In the past, her providers were "fixing" her condition as best they could. She could not do rehab because her failing liver and kidney made her weak. So there has been a big shift in her goals of care. Her providers are acknowledging that she is getting little benefit from being in the hospital. So they are sending her home even though she is producing no urine. This is a clear message that she can no longer be fixed. They want her to live her days in the place she will be most happy, such as at home with her dog. She no longer needs hospital care but she will need physical care and symptom management. She will need the "hands on" loving care of someone to meet her day to day physical needs. Hospice will be the very best option for her. Hospice care is a benefit under Medicare Part A that will pay for all the medical supplies, durable medical equipment and medications that you need. The hospice staff will teach you how to take care of her.
Here is the most important part. The hospice will prepare you for what is coming. They put emergency medications, oxygen etc. in the home in advance of these changes. You get a nurse who visits regularly, someone to help bathe your mother and emotional and spiritual support. Best of all, they are available to you 24 hours per day. If you need a nurse to come in the middle of the night, you will get that.
Regarding prognosis. It is true that no one can provide you with the length of time she will need care. We can however, describe below how this process will likely evolve and that should give you some sense of time.
Your mother's liver and kidneys are both failing. She has bruising because clotting is affected by liver function and her liver is failing. Her confusion will worsens as she is unable to metabolize properly and toxins affect her brain function. At some point she will no longer be able to swallow the medication that lowers her serum albumin level. The hospice will provide you with alternate medications that can be administered via under her tongue to manage her confusion and discomfort. She will grow weaker and at some point soon will be in the bed all the time. This weakness will extend to her ability to swallow. Most patients stop swallowing solid foods first, followed by liquids. When she can no longer swallow liquids, she will only last a few days to a few hours.
So the overall picture is increasing weakness and inability to eat. Few patient's die suddenly, most of them decline in a predictable and measurable way. They need help with feeding and bathing, good skin care to prevent breakdown and incontinence care.
It does not sound like this will be a long time. Weeks at the most. Families commit to caring for their loved one but should it last longer than anticipated, alternate plans can be made. The hospice helps families sort that out and come up with options. Remember that you are not alone. With hospice, you have a partner in her care.
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QUESTION: The blood transfusions helped only for about a week. So I can only assume this is the hemorrhage of something and making her bowels dark. She attempts to do physical therapy but can manage some one day but not for days after. Do we need to put her thru that. She is in her bed most of the time. She can not do hardly anything for herself she is so weak. Do we wait for a doctor to refer to hospice or is this something we need to do and if so how? She chokes frequently on her medication and holds things in her mouth for a long time and does not swallow. Would that mean she is having difficulty swallowing or could she just forget to swallow. I want to make her as comfortable as possible and we are not accomplishing that to well.
You are correct. The dark bowel movements probably mean that she is bleeding. Transfusions at this stage are only helpful if they improve symptoms. For example some patients are short of breath and transfusions can help. In her case, it does not sound like she would benefit at this stage.
Doctors sometimes wait to refer patients due to a lot of complicated reasons. You have a couple of options here. You can call the hospice directly, they should send a nurse to visit and determine if she is eligible. I believe that she easily meets the prognosis of less than 6 months criteria for hospice. The hospice will then call her primary doctor and get his approval for admission to the program.
You can also call the doctor yourself, thank him for his diligent care and tell him that your goal at this juncture is for her to be as comfortable as possible. Tell him you want hospice care and does he have a recommendation of which hospice would best meet her needs.
If the doctor says "no" (to hospice) , and I don't think he will, you still have options. You can ask for an evaluation of your mother by the hospice doctor. The hospice doctor can assume her care at home.
Choking is a sign that she is having difficulty swallowing. There is nothing you can do about it but offer only sips and bites. Choking increases her risk of Pneumonia and would place her in the final days of her illness. A great many patients die from lung infections. It happens as a result of her other organs (Liver,Kidney) failing. She would not benefit from antibiotics because she would simply aspirate again. It would prolong her dying rather that increasing her life.
Please don't wait for the doctor. He does not know what you are struggling with at home. Either call the hospice directly or the doctor directly. Write back if you need to. Best of luck