THOSE DIAGNOSED WITH A TERMINAL DISEASE ARE confronted with fears and questions that can dominate their life and the lives of those around them. One of the biggest concerns for many is what it will be like for them as they approach death. Will I be in pain? How of much “me” will still exist to experience what time is left? In 2016, the California End of Life Option Act (EOLOA) went into effect, allowing adults diagnosed with a terminal illness to make medical decisions that include obtaining a prescription for an aidin- dying medication from their attending physician, if certain conditions are met.
Essentially, the EOLOA allows the terminally ill to have more control over their lives as they approach the end. UCLA Health created a “gold standard” integration of the EOLOA into end-of-life care, which fits with the core principle that patients’ goals should guide the medical treatments they receive. However, not infrequently, questions arise regarding the EOLOA process.
In October 2021, Kathy Volz contributed more than $100,000 to establish the Donald H. Volz Memorial Fund, in memory of her father, Donald Volz. The fund, administered by the UCLA Health Department of Care Coordination and Clinical Social Work, will support education and services that help foster awareness and understanding of the EOLOA and its use.
“My dear father had ‘lived’ with Parkinson’s disease for over 20 years,” said Kathy Volz. “Courage and dignity were his trademark throughout an adventurous life. Upon learning of the California End of Life Option Act from a hospice worker, he proudly declared this was his desire. With the rest of the family in concert, I acted as his point guard in navigating the requirements in order to qualify through the UCLA Health system,” she said. “It became evident to me that many patients might not have the information, or the support of loved ones around them. I am hopeful the Donald H. Volz Memorial Fund will help qualifying patients assess if this unique option is right for them."
“At UCLA Health, we give our patients access to a wide variety of treatments to provide healing and comfort,” said Dr. Neil Wenger (MD ’84, RES ’87, ’90, FEL ’89), medical director of the UCLA Advance Care Planning Program. “When a prognosis worsens, patients may shift their focus and change treatment goals.
Most patients want to be in charge of their lives until they die; UCLA Health strives to ensure that all patients are fully informed and able to access all of their treatment options. For some patients, that means a choice to explore aid in dying.”
UCLA developed a process to ensure that this option will be available to eligible patients who wish to use it. Since EOLOA went into effect, more than 300 UCLA patients have explored this option; while about half obtained a prescription for an aid-in-dying medication, not all have chosen to use it. The UCLA model for implementation of the EOLOA includes a clinical consultant who works to inform and assist the patient in parallel with ensuring that UCLA is providing the best possible treatment and affording the patient maximal support for the best experience at the end of life.
Most patients inquiring about the EOLOA have advanced cancer, and these patients work with clinical consultants from the Simms/Mann-UCLA Center for Integrative Oncology. The health system also wants to ensure that no patient will ever request aid-in-dying due to inadequate support, while at the same time assuring access to the EOLOA.
UCLA trains clinical consultants and physicians in their roles to carry out the EOLOA, and the health system developed a set of materials to guide patients and their families, as well as clinicians, physicians and pharmacists.
Despite development of a comprehensive program, not all physicians and other clinicians are well-versed in the implementation of EOLOA. In addition, patients and families may be unaware of this option, even though it could potentially fit with their goals.
“This generous fund will provide the resources to educate clinicians across the health system regarding the End of Life Option Act, including some of the upcoming changes to the law in 2022,” said Codie Lieto, clinical social worker for advance care planning and palliative care. “This gift also will provide funds for a clinical-consultant social worker who engages with noncancer patients who wish to consider aid in dying. These clinical consultants support the patient, their family and clinicians in navigating the EOLOA process.”
Currently, no medical center support is available to provide these vital services to patients without cancer. Thanks to the Volz funding, UCLA Health will be able to work with UCLA Health physicians, nurses and social workers to identify gaps in knowledge and implement education for groups of clinicians as needed. In addition, it will provide resources for a social work clinical consultant who will offer EOLOA guidance to patients and physicians.
“Considering an aid-in-dying medication is a very personal choice,” said Mary Noli Pilkington, RN, senior director for care coordination and clinical social work. “Clinicians need a deep understanding of all aspects of performing this crucial task, and through this thoughtful gift, the Donald H. Volz Memorial Fund will help provide patients and their families the much-needed support from our specially trained social work clinical consultants who work with them and the physicians throughout the process.”
For more information, contact Ellen Haddigan-Durgun at: 310-206-3878.