Destigmatizing Palliative Care
Dr. Patel comes from a family of many healthcare professionals. Growing up, he was surrounded by chronic illness and always carried that experience with him. He became interested in liver disease in medical school. Throughout residency and other parts of his medical training, many of his role models were hepatologists. When Dr. Patel noticed that hepatology teams were great at caring for patients' physical needs, but gaps existed in meeting their psychological and informational needs, he chose to go from specializing in liver disease to palliative care. He knew palliative care could fill the gaps and wanted to dedicate the rest of his career to it.
Dr. Patel defines palliative care as a form of care that prioritizes quality of life and adds an additional layer of support for patients. When talking to patients about palliative care, he often describes the palliative care team, including doctors, nurse practitioners, nurses, pharmacists, social workers, and chaplains, who meet the patients' needs outside medical treatment services. When he embarked on this journey of palliative care research, Dr. Patel faced misperceptions from his patients and colleagues because they often conflated hospice with palliative care. Hospice is a type of palliative care delivered to patients when the life expectancy is six months or less.
To connect with other palliative care researchers, Dr. Patel established the PEARL group, which stands for palliative care, education, advocacy, and research of liver disease. The PEARL group comprises 15 to 20 researchers from across the country who are working to establish palliative care guidelines. Dr. Patel’s research has helped change how liver disease specialists think about palliative care. There are now guidelines that talk about palliative care delivery for cirrhosis and liver cancer. Many professional societies also endorse it as part of care, including the American Association for the Study of Liver Disease (AASLD). While he believes integrating palliative care into treatment plans has improved, Dr. Patel feels the public perception has not changed much.
As a clinician at the Veterans Affairs (VA) hospital, Dr. Patel has observed how the VA has improved these past few years by integrating a palliative care-focused approach. Since home care, patient-centered care, and veterans-centered care have been a huge part of the organization, the VA’s liver disease workgroup also endorses palliative care nationally for patients with liver disease. Typically, when Dr. Patel asks his patients at the VA what they know about palliative care, they either do not understand it or confuse it with hospice. Usually, when he explains that palliative care provides an extra layer of support, patients are more receptive to learning about it.
Dr. Patel believes that part of the challenge about talking about palliative care is the fear of death. He likes to talk to patients, so they feel prepared about things that might happen to them. With these early conversations, patients are more receptive to palliative care rather than just focusing on treatment. However, when patients see multiple healthcare teams, some may focus on getting them to the subsequent treatment, with little to no conversation about improving their quality of life and giving them extra support.
Dr. Patel introduces two solutions to improve the healthcare experience for liver disease patients: Shared Decision-Making and Advanced Care Planning.
Shared Decision-Making involves incorporating what's most important to patients and their families. Dr. Patel believes that healthcare providers are so focused on treating the tumor that they often forget about these other aspects of care. Most patients do not question their doctors because they are scared. If healthcare teams took a few steps back and put more of the puzzle pieces together, they could make better recommendations for their patients.
Advanced Care Planning allows healthcare providers to better understand patients' goals and values. In his research, Dr. Patel seeks to understand why advanced care planning doesn't happen as much for individuals with liver disease. As a result, most of his research focuses on improving communication between clinicians and patients about these topics.
