Progress in the Bay Area
Replicating the Gundersen model throughout the entire Bay Area is a long way off. Bringing together all the hospitals and the hundreds of senior facilities and social service agencies would be extremely difficult, especially without funding. In addition, the Bay Area has a diverse population with multiple languages and cultures. Without language-proficient facilitators, outreach to all sectors of the Bay Area would be nearly impossible.
Community educational outreach efforts largely depend on volunteers organizations like the East Bay Conversation Project, a community-wide coalition working to help people plan their preferences for care at the end of life. Volunteer advocates make presentations on advance care planning and help individuals fill out forms.
Another self-help initiative was started on-line by Dr. V.J. Periyakoil. It’s called The Stanford Letter Project. This website enables patients to communicate their end-of-life wishes to family and loved ones. As part of the project, Periyakoil created simple, easy-to-understand letter templates. It’s free and available in eight different languages. Periyakoil says most people stay away from end-of-life planning because it can be difficult to understand and navigate. “Advance directives is full of legal jargon,” said Periyakoil, “So when people read the jargon, and the medical legal jargon is actually quite intimidating. So if it’s like that for me as a physician, I can only imagine what it is for a patient. So when patients don’t understand something, they don’t want to sign it.”
One letter template is for friends and family. Patients can compose heartfelt messages expressing love, apologies, and gratitude and asking for forgiveness. Another template is the “what matters most” letter. It’s written at a fifth-grade level and the patient describes what he hopes to achieve in the future. In one letter posted on-line, Valia Clasel says, “What matters most to me is spending quality time with my family. I do not want to be a burden on my family...I do not want life support. I do not want to end up on a breathing machine, I do not want artificial liquid feeding.” In another letter, Marilyn Ababio says, “What matters to me most—I want to be able to take care of myself, and for me that means toilet and eat, to communicate, and be mobile....”
The Widespread Use of POLST in California
A Physician Order for Life-Sustaining Treatment (POLST) can help better ensure that the specific preferences of a patient nearing death are carried out. The POLST is a medical order that specifies the types of medical treatment a patient wishes to receive toward the end of life. This document is important for the terminally ill and frail and/or elderly people who do not want life-prolonging treatments. “It triggers the medical provider to ask them what they might want, to prevent unwanted hospital transfers, unwanted long ICU stays,” said Dr. Lael Conway Duncan with the Coalition for Compassionate Care of California, “It really gets patients and families to start thinking about quality-oriented, personally-centered care.” Unlike the advance directive, the directives specified in the POLST are mandatory and must be followed by anyone caring for the patient.
The Coalition for Compassionate Care in California and volunteers from 27 community-based coalitions have taken a lead role in disseminating POLST forms throughout the state. By 2012, 95% of California nursing homes had completed POLST forms with residents, 65% of hospitals had a formal POLST policy, and 75% of assisted living facilities had implemented POLST education for staff.