Like many of you, I will spend this holiday season with family and friends celebrating the year's blessings and remembering loved ones who are no longer here. It is also the time of year that my family is gathered and the pace of life slows temporarily, that I take the opportunity to talk about the type of medical care I would want if I were to become seriously ill, a conversation that gives my loved ones and myself greater peace of mind.
It is not a happy subject, but it is an important one. As a primary care clinician who has practiced at San Francisco General Hospital for more than 25 years, I have seen countless patients who have not shared their wishes or health care values with their families, and thus they and their families are unable to benefit from frank and open communications about this hard subject.
One of my patients, an amazing husband and father of two children, recently passed away from pancreatic cancer. Despite being diagnosed with this aggressive malignancy three years prior, his family delayed discussing the type of care he wanted at the end of his life. This made it so difficult to decide which treatments were in his best interests when he could no longer tell us. He also missed out on palliative care and hospice, which could have made his life — and his death — easier on him and his family. The conversation did not happen because they were not ready to acknowledge or talk about the severity of his illness.
My patient was a monolingual Spanish-speaking Latino who left a large extended family, many close friends, and an active church community. But because his wishes were not known, he endured countless hospitalizations with minimal benefit to his quality of life. In our Latino culture, loved ones come together when you need them, listen to what you want, and help make it happen; advance care planning could have put a greater focus on quality of life at the end and facilitated a more culturally consistent experience for all involved.
Culture and values are of vital importance when dealing with serious illness, yet many health care professionals lack the skills to have culturally competent conversations with patients and families. Thankfully, this is changing. The California Health Care Foundation recently released a report, Gather Round: Understanding How Culture Frames End-of-Life Choices for Patients and Families, that reveals how different cultures deal with the process of dying and mourning. Professional health education providers are already translating these insights into training; notably, a course on Cultural Diversity and End-of-Life Care from the Coalition for Compassionate Care of California and a course on Culturally Competent Palliative Care of Latinos are offered by the California State University Institute for Palliative Care.
Culturally appropriate education on the advantages of advance care planning, palliative care, and hospice services is spreading to ethnic communities. With the support of our grant to New America Media, a two-part article featuring the final acts of a husband, father, and self-described low-rider was recently published by Eastern Group Publications, the largest chain of Hispanic-owned, bilingual newspapers in the United States. Also with support from CHCF, www.prepareforyourcare.org recently launched Spanish-language content to help patients make medical decisions and talk with their family and doctors about those choices.
Education like this is working. I have a patient who took the time to complete an advance directive and tell his family about his wishes before open-heart surgery. The surgery was a success, but he recently had a complication that sent him back to the hospital. While in the ambulance the question of his preferences was raised and he knew the answer. He had considered his options and discussed them, in advance, with his wife, children, and doctor. He knew exactly what he wanted done, what he didn't, and who he wanted around him; he'd had the conversation.
For this patient, living every day to its fullest didn't mean living day-to-day without a plan. But he didn't do it alone. As a physician I routinely remind people that there are professionals who can help them understand their illness and how it is likely to progress, and to help them weigh their options and have the conversation with loved ones. One of these professionals is Dr. Angelo Volandes, creator of Advance Care Planning Decisions, a nonprofit that has developed videos to help patients make informed choices. Dr. Volandes recently visited CHCF and shared more information about his work in a short filmed interview.
Medical professionals like Dr. Volandes can ensure that patients and families receive the care that best fits their values and clinical situation. We must meet families where they are — culturally, spiritually, and physically — and make sure that these aspects are fully integrated into health care decisions in ways that make sense for the whole family, as well as the patient and the circumstance.
In a real way, to have this conversation with patients is to give them the opportunity to fully engage with their families and health care providers to clear a path forward that is fully encompassing of their values and wishes. I cannot think of anything that brings more peace to difficult decisions.