Tomi Cunningham didn’t want her daughter to have to go through what she experienced last fall.  She had to step as medical surrogate during a health crisis that that put her mother in the hospital, unable to make decisions.

“It worked out well; she made good choices, but she had to guess what I wanted,” said Cunningham. “She told me she was really frightened she was making the wrong choices.”

A crisis is the worst time to make decisions about medical care or select a proxy when you can no longer speak for yourself. Yet, only 37 percent of U. S. adults have made plans to address end-of-life issues, according to research by the University of Pennsylvania.

Cunningham decided she needed something official – ahead of an emergency. So, she signed up for a workshop to create an Advance Directive, a document giving a chosen person medical power of attorney to make decisions when you can’t. “I want it to be easier for her next time,” she said.

Her workshop was one of many held in neighborhood and senior centers, residential facilities, the Veterans Administration and public libraries last month as part of National Healthcare Decisions Day. It’s an initiative begun in 2010 by Pulitzer Prize-winning writer Ellen Goodman and others in collaboration with The Institute for Healthcare Improvement. They designated April 16 as a day to inspire, educate and empower the public and providers about the importance of advance care planning.

NHDD was adopted in San Francisco by the city’s Department of Aging and Adult Services’ Palliative Care Work Group. “Without the conversation, there can be confusion, conflict and guilt in a situation that’s already very stressful. With a plan in place, you can focus on the things that matter,” said DAAS Executive Director Shireen McSpadden. “Our goal with National Healthcare Decision Day is for all San Franciscans to have an advance care plan.”

Video tutorials, cards games and conversation

The workshops, attended by doctors, social service providers and members of the public, shared three programs to help people with advance planning:

PREPARE for Your Care offers short videos and handouts to lead viewers through the process of completing their Advance Directive. You can prepare the document on this site, as well as save and modify it at a later date. The videos and all accompanying materials, including advance directive forms from all 50 states were developed as a project of The Regents of the University of California. All accompanying materials are free, can be easily downloaded are available in English and Spanish.

Heart to Heart Café is a card game that helps users identify their wishes and values around end-of-life care. The cards, available in English and Chinese, were created by The Chinese American Coalition for Compassionate Care.

The Conversation Project is a tool to help you discuss end-of-life choices and care with a family member, friend or other loved one. It focuses on recognizing your values, selecting a healthcare proxy, and talking with your proxy and doctor about those values. The free kit is available in a number of languages.

But advance planning and directives are no good if they’re not shared with others, said geriatrician Dr. Anna Chodos, who treats patients in the Richard Fine People’s Clinic at the Zuckerberg San Francisco General Hospital. She has seen what happens when advance care decisions are not made or shared with medical providers and the patient’s surrogate.

Doctors don’t guess

“Most people are going to be physically or cognitively unable to make a medical decision at some point in their medical care,” she said. “And unfortunately, doctors and medical care teams are terrible at guessing what that person would have wanted, and family and friends get really stressed out when doctors start asking them … and they don’t know because they never previously had a conversation about it.“

A number of session attendees worried it would be asking too much of someone to be your medical surrogate. “Far from being a burden, look at the conversation around advance care as a gift for your family,” said Dr. Christine Ritchie, a University of California-San Francisco gerontologist and co-chair of the Palliative Care Work Group.

It is particularly important to create an Advance Directive for someone with dementia while they are still capable of planning. For advice on starting the conversation, contact Rachel Main, family support coordinator at the Alzheimer’s Association to receive a power point presentation with live links of resources. rmain@alz.org, or 415-463-8505.

“NHDD is one of many opportunities to stimulate conversations about end-of-life and medical care during a crisis,” said McSpadden. “The conversations begun on April 16 need to continue.”