End-Stage Liver Disease at the End of Life

If you are reading this tonight

You may be here because the person you love is getting weaker, because a doctor has used the word "hospice," or because you simply want to be ready. Whatever brought you here, you are doing something loving by learning what lies ahead.

End-stage liver disease (ESLD) means the liver can no longer do its work. NIDDK notes that the only treatment for liver failure is a transplant. For some people a transplant is not possible, or the wait runs out of time. This page explains palliative care and hospice, what being "too sick for transplant" means, the changes you may see near the end, and how to care for yourself. It is part of our caregiver hub.

Every person's path is different. Please use this page alongside your loved one's liver team or hospice team, who know the details of their care.

Palliative care is not giving up

Palliative care is care focused on comfort and quality of life for people with a serious illness. It treats symptoms and supports the whole family, including with emotional, spiritual and practical problems.

The American Association for the Study of Liver Diseases (AASLD) published guidance in 2022 on palliative care in decompensated cirrhosis. It says:

• Palliative care can be given at any stage of decompensated cirrhosis.
• It can be given at the same time as treatment aimed at the disease, including transplant evaluation and time on the waiting list.
• Caring for caregivers is a central part of palliative care.

The same guidance notes that people with cirrhosis are often referred to palliative care late, or not at all. You can ask for it now: "Can we get a palliative care consult to help with symptoms and planning?" Asking does not take your loved one off the transplant path. It adds a team whose whole job is comfort.

Palliative care and hospice: what is the difference?

Sources: AASLD 2022 guidance and Medicare. Under federal Medicare hospice rules, each hospice team includes a doctor, a registered nurse, a social worker or counselor, and a pastoral or other counselor. Nursing and doctor services must be available 24 hours a day, 7 days a week, and hospices must offer grief support to families.

Who qualifies for hospice with liver disease

Under Medicare, hospice is covered when your loved one's hospice doctor and regular doctor (if they have one) certify a life expectancy of 6 months or less if the illness runs its normal course, and your loved one chooses comfort care instead of care to cure the illness. They sign an election statement to start.

For liver disease, the Medicare coverage rules (CMS LCD L34538) describe it in two parts. In plain words:

• Blood tests show a very weak liver: blood that clots slowly (a high INR or prothrombin time) and a low albumin level.
• Plus at least one serious complication, such as belly fluid (ascites) that no longer responds to treatment, an infection of that fluid, kidney failure caused by the liver (hepatorenal syndrome), confusion (hepatic encephalopathy) that no longer responds to treatment, or repeated bleeding from swollen veins despite treatment.

Weight loss, muscle wasting and liver cancer can add support. The AASLD guidance adds that a high MELD score can also help doctors judge whether hospice fits. Your loved one's doctors make this call; you do not have to figure it out yourself. If hospice care stops being the right choice, Medicare allows people to leave hospice.

Can you be on hospice and the transplant list?

It is possible, but uncommon. The AASLD guidance says people waiting for a transplant who meet the hospice criteria can be certified for the Medicare hospice benefit, and that if a donor liver becomes available they would be discharged from hospice. The barrier is cost: Medicare hospice does not cover treatment aimed at curing the illness, so most families end up choosing one path. If your loved one is still listed, ask both teams how they would work together.

When the team says "too sick for a transplant"

Sometimes a person on the liver transplant waiting list becomes so ill that the team believes surgery would no longer help, or would be too dangerous. The person is then removed from the list. This happens more often than many families realize: in 2023, 973 adults were removed from the U.S. liver waiting list because they were too sick for a transplant, according to the national OPTN/SRTR report.

Hearing this can feel like the floor drops away. You may feel grief, anger, shock or even relief, sometimes all at once. All of these are normal. It can help to ask:

• What exactly changed, and is there any chance it could improve?
• What treatments still make sense, and which ones would only add burden?
• Can we meet with palliative care, and is hospice an option now?
• What should we expect in the coming weeks?

If the illness leading here was decompensated cirrhosis, the problems you already know, such as fluid, confusion and bleeding, are often the ones the team will help you prepare for.

What you may see in the final weeks and days

The National Cancer Institute's guide to the last days of life explains that the end of life may take months, weeks, days or hours, and that the usual signs do not appear in everyone, so it can be hard to know when death is near. These changes are common. You may see your loved one:

• Sleep more, and answer slowly or not at all.
• Lose the wish to eat or drink, and have trouble swallowing.
• Be more confused, or see or hear things that are not there.
• Pass less urine, which may be dark.
• Have hands and feet that look blotchy, cold or blue.
• Breathe irregularly: very shallow breaths, short pauses, or deep, rapid breaths, sometimes with a rattling sound.
• Stop responding to others.

With liver disease, problems that were already there can get worse. The skin and eyes may turn more yellow (jaundice), fluid may build in the belly and legs, and confusion from hepatic encephalopathy may deepen. The AASLD guidance advises that families be prepared for bleeding, infection and confusion. Ask the hospice team for a plan for each. If bleeding is a risk, some families who have chosen to stay at home keep dark towels nearby and have medicine ready to ease distress, as the AASLD guidance describes.

Comfort care at home

Small things make a real difference. The National Cancer Institute suggests:

• Give medicines for pain or other symptoms as the team directs. If swallowing becomes hard, ask about other ways to give them.
• Do not force food or drink. Ice chips or a mouth swab can keep the mouth and lips moist.
• If hands and feet are cold, use blankets, but not electric blankets or heating pads.
• If breathing sounds wet or rattling, raising the head of the bed or turning your loved one to one side often helps.
• Keep touching and talking to them. Most people can still hear after they can no longer speak.

Treatments may change near the end. The AASLD guidance notes that some families choose to change or stop lactulose if its side effects cause more distress than help. Talk this through with the team before making any change.

If your loved one is on hospice, keep the hospice team's 24-hour number handy for questions about their care. Under Medicare, emergency room care, hospital stays and ambulance rides for the hospice illness are covered only when the hospice team arranges them, and Medicare says to contact your hospice team before getting these services or you might have to pay the entire cost.

Paperwork that protects your loved one's wishes

These documents make sure your loved one's choices are followed if they cannot speak for themselves. Hepatic encephalopathy can take that ability away suddenly, so it is wise to complete them early.

• Advance directive (living will): says which treatments they do or do not want, such as CPR, a breathing machine or tube feeding. Each state has its own rules.
• Health care agent (proxy or health care power of attorney): names one person to make medical decisions for them if they cannot.
• Do-not-resuscitate (DNR) order: a doctor's order not to perform CPR.
• POLST form: a portable medical order, signed with a clinician, that tells emergency workers which treatments to give and whether to go to the hospital. It is optional and is meant for people who are seriously ill.

Keep copies with the hospice or liver team, at home where emergency workers can find them, and with the health care agent.

Caring for yourself, and grief

The AASLD guidance says caregiver support matters across the whole illness, at the end of life, and after death. Hospice teams continue to support families through grief after a death. Use the respite care and counseling they offer.

• Accept help with meals, errands and overnight shifts.
• Step away for a few minutes when you need to. That is not abandoning anyone.
• Talk with a chaplain, counselor or support group, before and after the death.
• If you are in crisis or thinking of harming yourself, call or text 988, the Suicide & Crisis Lifeline, any time.

You have been carrying a great deal. Read our guide to caregiver burnout, and reach out to us through our support page if you need someone to talk to.