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Conference Participants Tackle End-of-Life Issues

More than 100 healthcare providers — including physicians, ethicists, social workers, nurses and patient advocates — gathered Nov. 7 for an all-day conference to discuss the impact and implications of end-of-life care on clinicians and patients.

The conference, Bridging the Gulf: Challenges of End-of-Life Care in California, was hosted by Cedars-Sinai, the National Academies of Sciences, Engineering and Medicine, and the Leonard D. Schaeffer Center for Health Policy and Economics at the University of Southern California.

Leonard D. Schaeffer, the Judge Robert Maclay Widney Chair and Professor at USC, began the day by addressing the challenges and complexities of treating patients at the end of life.

"The public is way ahead of policymakers," said Schaeffer. "For many patients, the clear desire is for final days to be spent under palliative care at home. We need to identify the changes that need to be made and the stakeholders who can make it happen."

Schaeffer and others pointed out the disconnect between what people want and what healthcare provides.

"What is the goal of healthcare at the end of life?" asked Arthur Stone, director of the USC Dornsife Center for Self-Report Science. His research identified what is most important to patients: to die at home (70 percent), to be comfortable without pain (66 percent) and to ease the burden of healthcare costs on their families (67 percent).

Elizabeth Bailey, author of The Patient's Checklist, brought a patient's point of view to the room. The former music video producer became an advocate for patients after years of caring for her ailing father.

"Modern medical care can make it hard to trust human intuition and common sense," Bailey told the gathering.

Bailey said a prescription for steroids sent her father, once an independent man, into a catastrophic medical decline. What followed were "10 years in the wilderness" of managing his care through myriad specialists. He found relief at a Veterans Administration facility. "They asked him, ‘Mr. Bailey, what is most important to you?' " His answer was simple — The New York Times, two bowls of ice cream and one martini a day.

During breakout sessions, participants got an opportunity to grapple with pressing issues in end-of-life care. The small group discussions focused, for example, on challenges faced by care teams, advance care planning and the needs of diverse patient populations.

Claudia Crist, chief deputy director of policy and programs at the California Department of Public Health, discussed the Let's Get Healthy California campaign, which includes end-of-life initiatives.

Good communication is the first step, Crist said. Only 27 percent of Californians have written down their end-of-life wishes, she noted. Only 7 percent said their doctors had raised the subject with them.

"Start the conversation," Crist told the conference. "Help your colleagues."