Advances in the treatment of primary biliary cholangitis (PBC) have improved survival rates, meaning that PBC has become a long-term condition. In many cases, people with PBC who are diagnosed early lead normal, symptom-free lives for 10-15 years after diagnosis.
Once symptoms appear, the effect on quality of life can be significant. If the disease progresses aggressively, liver failure can ensue, which will require a liver transplant for survival.
PBC is a rare, chronic autoimmune liver disease that mainly affects middle-aged women. It progressively breaks down the small bile ducts within the liver, stopping the flow of bile to the small intestine. This leads to a buildup of bile in the liver, causing inflammation of the liver, fibrosis and cirrhosis and impaired liver function. With no known cure, treatment aims to slow disease progression, particularly if detected in its early stages.
The symptom burden of PBC varies between stages of the disease, becoming more pronounced as the disease progresses. Most people with PBC are asymptomatic at diagnosis, but later develop symptoms including fatigue, itchy skin, brain fog, eye dryness, joint and stomach pain and jaundice. Changes to diet and lifestyle can help reduce their impact, but chronic fatigue and incessant itchiness often lead to depression, self-isolation and emotional stress.
Palliative care in PBC
Palliative care focuses on treating the symptoms, pain and stress of a chronic disease to improve quality of life when no cure is available. A palliative care team is a multidisciplinary team that usually consists of a doctor, a specialist nurse and a social worker.
People living with PBC often experience a heavy symptom burden which significantly impacts their well-being and daily life. In advanced stages of PBC, and in the case of liver failure, a palliative care team is key in supporting the patient with managing their symptoms, as well as the associated anxiety, depression and emotional aspect of waiting for life-saving surgery. The palliative care team will also participate in coordinating communication with the patient’s healthcare team. Caregivers and family will also benefit from the support.
Accessing palliative care
The first step in requesting palliative care is asking for a referral from your doctor. Palliative care is based on need, not prognosis, and it is up to the individual to make the request.
There are many palliative care providers offering personalized medical care at all stages of chronic diseases. As well as offering help in managing PBC symptoms and providing emotional support for the patient and their family, they also offer practical support, assisting with care coordination and decision making.
