Quality of life with liver disease. Palliative care can help.
If you are living with liver disease, you know that your illness can affect almost every part of your body and the way you feel emotionally. It’s a difficult road to travel and can be frightening for you and for your loved ones. Palliative care can help.
Palliative care is medical care for people living with serious illnesses like liver disease. The goal of palliative care is to improve quality of life for patients and families by providing relief from the symptoms, pain and stress of illness. Palliative care is provided by a team of palliative care doctors, nurses, and other specialists who work together with your other doctors. It gives you an added layer of support, and you can have it at the same time as all your other treatments.
Pain management is often more complicated for people living with liver disease. Changes in the liver mean that certain medications should be avoided, or the dose should be adjusted, in order to avoid side effects and the worsening of symptoms associated with liver disease. Palliative care doctors are experts in complex symptom management. They can manage your pain alongside your other symptoms. These symptoms could include pain, muscle cramps, confusion, appetite and weight loss, nausea, itchy skin, muscle wasting, swelling of the legs and abdomen, bleeding, infections, fatigue, anxiety, and depression. People living with liver disease may also struggle with substance abuse. Your palliative care team will assess and treat you for all these symptoms, working with your liver specialist to help you feel as well as possible.
Communication is an important part of palliative care. Your palliative care team will talk to you in detail about what quality of life means to you. They will help you understand your illness and how it may progress, and they will give you the information you need to make choices about your future medical care that will match your personal goals. They will work with your liver specialist to ensure that your treatments are in line with what you want, and they will help you talk to your family about your choices.
Over time, your liver may no longer work properly and your symptoms may become more severe. This chronic liver failure is called end-stage liver disease. Some people in this stage of disease may qualify for a liver transplant. If you are approved for transplant, your palliative care team will work with your doctor and your transplant team to help with symptom control and emotional support before and after your surgery. If transplant is not an option for you, your palliative care team will continue to manage your physical and emotional symptoms to give you and your family the best possible quality of life.
If you, or someone you love, is living with liver disease, don’t wait to ask for a referral to palliative care: the earlier, the better. Palliative care is available in most hospitals, and depending on your area, it may be available in outpatient clinics and for home visits.
At GetPalliativeCare.org you can look for palliative care in the Provider Directory, take a short quiz to see whether you could benefit from palliative care, and you can read more about palliative care and liver disease.