management strategies
- Pain: Medications may be used for pain management at the end of life; however, the best therapies to use can vary for each person with ESLD. Please talk to your doctor about the right type of medication and dosage for you. Alternative methods for managing pain can include acupuncture and mindfulness.
- Ascites: A low-salt diet and oral diuretics (medications to help remove fluids from the body) are usually prescribed. If these treatments begin to lose effect, more invasive options, such as using a needle to remove fluid from the abdomen or surgery, may be considered.
- Hepatic encephalopathy: Laxatives and antibiotics are most commonly used to help preserve brain function, because they can reduce the build-up of certain toxins in the blood which are harmful to the brain.
- Malnutrition: Ensuring sufficient calorie intake, especially protein, as well as vitamin replacement, is recommended.
what is my life expectancy with ESLD?
It is hard to predict the life expectancy for someone with ESLD because it is influenced by many factors, such as the degree of liver disease or the presence of complications and of other diseases. While it is difficult to gauge a precise timeline for ESLD, certain symptoms have been associated with worsening disease and shorter life expectancy, such as ascites that does not respond to treatment, kidney failure, and bleeding from the gastrointestinal tract. Also, those with advanced stage cirrhosis have an average life expectancy of about two years. A model has been developed that predicts long-term outcomes for ESLD, called the Model for End Stage Liver Disease (MELD). The MELD score is based on lab values and is used for prioritizing patients waiting for a greffe de foie. Your doctor would be able to provide you with a more accurate assessment of your current situation.
what should I know about advance care planning?
Advance Care Planning (ACP) is a process of thinking about and sharing wishes for future health and personal care. It can help prepare everyone when a person becomes ill and unable to communicate. ACP takes into account goals, values, and beliefs with regard to a person’s end-of-life decisions. The process of planning involves the patient, their family, and their health care team, and it can help guide future health care decisions. The discussion should begin early in the disease process to ensure a plan is in place for managing the patient when their health declines. ACP directives should be reviewed, especially during hospital admissions.
some topics to think about can include:
- What is important to you?
- Do you have beliefs that influence your health care wishes?
- Are there conditions under which you do or do not want a certain treatment?
- Where would you want to be cared for?
- Have you had experiences with family or friends where health care decisions had to be made?
- Have you considered Organ and Tissue Donation?
some documents that should be considered:
- Power of Attorney: Legal document that gives another person the right to make medical decisions on the patient’s behalf
- Living will: Document that details the patient’s preferences for future medical care, usually consisting of resuscitation and life support preferences and specific interventions, such as enteral feeding or ventilator (breathing tube) support
what is palliative care?
The goal of palliative care is to improve the quality of life for individuals suffering from an advanced illness, to provide comfort and dignity, and to relieve suffering. Palliative care addresses medical, emotional, and spiritual needs. Early access to palliative care for those living with a chronic disease is associated with an improved quality of life. Instead of prolonging life with medical treatment, palliative care focuses on quality of life. Symptom management is an important aspect of palliative care.
The course of ESLD is not easily predictable due to its periods of recovery and worsening symptoms; therefore, early palliative care referrals should be sought.
when should I seek palliative care?
Possible triggers that could prompt one to seek palliative care are:
- Swelling of the abdomen due to fluid build-up (ascites) that does not resolve with treatment
- Infection of the ascitic fluid (accumulated fluid in the abdominal cavity)
- Kidney failure
- Impaired cognitive or worsening brain function
what is hospice care?
Hospice care is a branch of palliative care that is directed towards individuals who are in their last six months of life.
