The liver has many important jobs that are vital to the sustainability of life. It processes what is ingested into energy and nutrients that the body can use. It also removes harmful substances from the blood. Because of its role in keeping the body running, the liver may be damaged by long-term diseases and as it is repeatedly injured, it produces scar tissue known as cirrhosis. Cirrhosis is unpredictable with stretches of stability and periods of decompensation that may result in a rapid health decline. It also can be tricky to diagnose as many with the condition have no symptoms in the early stages.
It is currently estimated that approximately 4.5 million adults in the United States have been diagnosed with liver disease – that’s 1.8 percent of all Americans. Of that 1.8 percent, 44,358 people lost their battle with the disease in 2019.
Because of its link to other diseases, such as hepatitis or alcoholism, cirrhosis individuals may experience a health crisis or lose decision-making capacity before their family or healthcare team has discussed their wishes for hospice or end-of-life (EOL) care. Therefore, it is crucial to have early discussions regarding a individual’s desired care choices and to document those discussions for future use should a medical emergency arise and the individual is no longer able to speak for themselves.
Advance Care Planning Early On
Among individuals with cirrhosis, advance care planning (ACP) should begin in the outpatient setting early in the course of treatment and be updated periodically, especially as changes in health status happen. At this time, a surrogate decision maker also should be appointed and given health care power of attorney as hepatic encephalopathy can impair decision making in this population of individuals. This decision maker should be intimately involved throughout the ACP process so they are aware of wishes and choices.
Healthcare providers and caregivers should prepare both the individual and surrogate to make decisions regarding care preferences for each stage of treatment and as the disease progresses. Because of the unpredictability of cirrhosis, individuals may encounter difficult medical decisions quickly and may experience complications that threaten decision making. Early integration of ACP improves decision making at the EOL, reduces health care utilization, may eliminate the introduction of unwanted treatment, and enhances quality of life.
Cirrhosis individuals often put ACP off due to lack of understanding of the disease and its trajectory, unrealistic expectations of treatment, and maintaining hope of a liver transplant. For these reasons, it is imperative that surrogates strive to ask pertinent questions regarding treatment and care preferences at each stage of the disease. What an individual wants in the beginning may change through time. Revising AD documentation with these changes is important to maintain goal concordant care.
It also is imperative that clinicians and caregivers are as clear and transparent as possible about where the individual is in the disease’s progression and ensure that they understand the specifics of their situation. Surrogates also should have a clear understanding of the individual’s prognosis as they can be helpful in communicating the need for ACP.
Getting Started with Advance Care Planning
Iris specializes in creating high-quality, industry-leading advance care plans by providing individuals with a tailored, person-centered care planning experience. Our facilitators are able to provide compassionate and personalized support to individuals while helping them make educated, scenario-based decisions about their future care goals.
Organizations that make ACP a part of their population health strategies will improve quality of care delivered to patients and enhance the patient experience while better managing and allocating healthcare resources. If you’d like to see how Iris can help your health plan achieve high-quality care plans, get in touch with us today.