End-Stage Liver Disease and Palliative Care

What is End-Stage Liver Disease?

The term End-Stage Liver Disease (ESLD) is used to describe advanced liver disease, liver failure, and decompensated cirrhosis (an advanced stage of cirrhosis). ESLD develops after an inflammation of the liver, which then leads to fibrosis (scarring), and loss of regular liver function. While the only cure for ESLD is liver transplantation, many patients do not receive one due to wait times or other health issues that make them too sick to survive surgery.

What are the Common Symptoms of ESLD?

The severity of symptoms may be worse in decompensated liver disease, so symptom management should be done  with an interdisciplinary health care team.

Common physical symptoms include:

• Abdominal pain
• Fatigue
• Confusion
• Pruritis (itchiness)
• Jaundice (yellowing of the skin and eyes due to the buildup of bile)
• Muscle cramps
• Edema (swelling) in the legs
• Dyspnea (shortness of breath)
• Nausea and vomiting
• Constipation
• Diarrhea
• Malnutrition

What are Some Complications Associated with ESLD

Specific complications of ESLD are related to portal hypertension (increasingly difficult blood flow through the liver due to permanent changes in the liver cells).

• Ascites (swelling of the abdomen due to fluid build-up)
• Spontaneous bacterial peritonitis (infection of the fluid from ascites) — The symptoms may include fever, abdominal pain, and low blood pressure, but this can also be present without any symptoms at all
• Esophageal and gastric varices (impaired blood flow through the liver, resulting in the blood flow being re-routed around the liver into small veins in the passageway between the throat, stomach, and abdomen. These small veins become enlarged and can burst and cause bleeding.)
• Hepatic encephalopathy (deterioration of brain function) which may be experienced as:

– Trouble sleeping at night
– Difficulty thinking clearly
– Disorientation
– Poor concentration or shortened attention span
– Mild to severe confusion
– Forgetfulness
– Shortened attention span
– Poor judgement
– Personality or mood changes
– Slow reaction time
– Anxiety
– Depression
– Worsening of handwriting or other fine motor movements
– Unusual movements, such as shaking of hands or arms
– Slurred speech
– Slowed movement
– Decreased alertness and responsiveness

• Coagulopathy (prolonged bleeding):

– Spontaneous bruising
– Bleeding inside the stomach or intestine
– Bloating

• Hepatorenal syndrome (impaired kidney function)

How are Symptoms for ESLD Managed?

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, e.g., spironolactone or furosemide), 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.

Itchiness: A common medication, called cholestyramine, is used to help with the itchiness. The exact mechanism by which this medication helps with itchiness is not fully understood, but it is believed that cholestyramine helps the body excrete chemicals through the stool.

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 liver transplant. 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 (ACP)?

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.

Where Do I Access Palliative Care in Canada?

You may wish to speak to your doctor, home care nurse, or social worker to find out about palliative care services available near you or to obtain a referral.

The websites and phone numbers for each province below can also be useful:

Alberta:

• Palliative coverage is available to Albertans who have been diagnosed as palliative by a doctor or nurse practitioner.
• You can apply for the program by having your health care provider complete the form provided on this website and faxing it to Alberta Health.
• To find where palliative care services are offered, visit this link.
• Pilgrims Hospice can be used to complement palliative services. They are a non-profit organization that provides community-based hospice and bereavement care in a homelike environment.

British Colombia:

• Palliative care benefits are available to BC residents who want palliative care. They can receive coverage of medications, medical supplies and equipment where they are living. The doctor or nurse practitioner has to confirm that you meet the criteria and then fax the information to Health Insurance BC and The Home and Community Care office in your regional health authority locality.
• This link discusses how to arrange for palliative care in British Columbia.
• Eligibility criteria is listed here.
• Contact information for the regional health authorities is provided through this link.

Manitoba:

• The Palliative Care Drug Access Program offered by the provincial government covers the cost of drugs during the end stages of one’s illness. Your doctor or nurse practitioner has to complete the form and then submit it to the palliative care coordinator at the regional health authority. Visit here for more information.
• The Winnipeg Regional Health Authority coordinates palliative care services and ensures your doctor or nurse practitioner makes a referral. Their information can be found here.
• Grace Hospice is a palliative care facility at Grace Hospital in Winnipeg and their contact information is provided here.
• Jocelyn House is a hospice house in Winnipeg.
• There is information about bereavement services

New Brunswick:

• New Brunswick Extra-Mural Programs Home care program is accessible through this link
• Horizon Health Network Palliative Care’s regional pallatative care program
• is accessible here.
• Tantramar Hospice Palliative Care Organization’s regional palliative care program is accessible here.

Newfoundland and Labrador:

•  Central Health Palliative Care information is available through this link.

 Nova Scotia:

• Information on the province’s Palliative Care Drug Program is available here.
• Nova Scotia Continuing Care’s home care program provides information through this link.
• Antigonish Town and County Palliative Care Society local palliative care program is discussed here.
• Eastern Memorial Hospital Palliative Care’s local palliative care program is discussed here.

 North West Territories:

• Home care palliative care service is accessible by clicking this link.

Nunavut:

• There is a residential long-term care unit in the Kitikmeot Regional Health Centre.

Ontario:

• Hospice Palliative Care Ontario provides information at this website.
• Home Care Ontario – Home Care Services is accessible here.
• University Health Network – Inpatient Hospice Palliative Care Directory is accessible here.
• The Careguide – Hospice and Palliative Care Providers in Ontario is accessible here.
• You can contact Hospice Palliative Care Information Line at 1-877-203-INFO (toll-free)

 Prince Edward Island:

• Prince Edward Island Palliative Care’s homecare program provides information on this website.
• Information about the E.I. Palliative Care Program is available here.
• The Gardens of Hope Respite Cottage’s local palliative care program is accessible here.

 Quebec:

• Bien chez soi offers palliative services
• Palliative home care is offered by the Centre de santé et de services sociaux
• West Island Palliative Care Residence Admission form
• A list of inpatient hospitals that provide palliative care

Saskatchewan:

• The provincial government has a program that helps pay for prescription drugs for palliative care patients. To register for this program your doctor must complete a “Palliative Care Coverage Form” request. Prescription drugs, dietary supplements and other basic supplies are covered by this program. Visit here for more information.
• Eligibilty for home care funding is discussed here.
• Cypress Health Region offers Palliative services is accessible here.
• Saskatchewan centres that offer palliative services is listed at this link.

Yukon Territory:

• Information about the Yukon’s Home care program is provided here
• Hospice Yukon may be reached here.
• Palliative care resource team provides information at this link.