When I was 11 years old, my mother passed away from leukemia, and since then, I developed a passion for helping those who are battling cancer and other life-threatening illnesses. During law school, I completed internships with Compassion & Choices, an end-of-life advocacy organization, and the Cancer Legal Resource Center (CLRC), and through these experiences, as well as through coursework, my eyes were opened to the injustices felt by terminally ill patients.
Terminally ill patients have a number of end-of-life options available to them, including the continuation of curative treatment, knowing prognoses, hospice care, aggressive pain and symptom management, the refusal of unwanted treatment, voluntary stopping eating and drinking, and palliative sedation. They may also complete an advance health care directive and a Physician Orders for Life Sustaining Treatment (POLST) form to ensure that their wishes are carried out and appoint a legally recognized health care decision maker. However, physicians do not always effectively communicate these options to their terminally ill patients. As a result, patients are stripped of the autonomy to make their own health care decisions and may even be deprived of the dignified and peaceful deaths they could have experienced had they been given the opportunity to die in a manner that they prefer.
To remedy this problem, California enacted the Right to Know End-of-Life Options Act
(Right to Know Act), giving terminally ill patients the right to comprehensive end-of-life counseling. However, the major flaw in the act is that patients must request such counseling before physicians are obligated to provide it. Therefore, if patients do not know about the act, they will not reap its benefits. Consequently, even with the act, physicians still may not inform their patients of the available options. Such was the case in Hargett v. Vitas in which the patient was dying from cancer and began hospice care in the hopes of dying in peace. However, she was denied such relief. Despite her persistent pain, the patient was never informed of palliative sedation, and consequently, she died in agony.
Recalling my own mother’s struggles at the end of her life, I wanted to somehow share the Right to Know Act with terminally ill patients and empower them to make their own end-of-life decisions. But how? It was then that Joanna Morales, the then Director of the CLRC, informed me of the Women Lawyers Association of Los Angeles’ Fran Kandel Public Interest Grant. With the money I received from WLALA’s grant, I created booklets and a PowerPoint presentation discussing the Right to Know Act and the various end-of-life options available to terminally ill Californians.
Receiving the grant gave me the opportunity provide patient advocacy organizations, such as the CLRC, with educational tools to be used in informing patients of their rights and helped me to achieve my goal of serving the cancer community, along with all terminally ill patients, through my professional life. For this, I would like to express my sincere gratitude to WLALA, especially Patricia Daza and Cathy Ostiller who have provided constant guidance and support throughout the completion my project. I would also like to give special thanks to Joanna Morales for serving as an invaluable mentor and letting me know of an opportunity that I can only hope will make a positive difference in someone’s life.
Jacquelyn Baylon is one of WLALA's 2011 Fran Kandel Public Interest Grant Recipients.