By Sandy Kleffman
Contra Costa (Calif.) Times
People are eager to have honest discussions about end-of-life alternatives.
But in many ways, such conversations have been "engineered" out of today's health care system, said speakers at Health Journalism 2011 in Philadelphia.
Medicare does not reimburse doctors for such discussions, and busy health professionals often find it difficult to carve out the time to assist patients in making informed medical decisions, panelists said.
"It's a really fertile area for us as storytellers," said Jordan Rau, correspondent for Kaiser Health News and moderator of the "Advance Care Planning: Explaining, Not Scaring" panel.
Advance directives, which detail what types of medical treatments people want at the end of their lives, became a hot-button issue in 2009 when Democrats proposed including a provision in the health care reform bill that would have allowed Medicare to reimburse doctors for the time spent discussing such issues with patients.
Democratic leaders withdrew the proposal after former Alaska Gov. Sarah Palin ignited a firestorm by arguing that the proposal would lead to "death panels."
The false death panel rhetoric "set us back a great deal," said Rebecca Sudore, M.D., assistant professor of medicine in the division of geriatrics at UC San Francisco and a staff physician at San Francisco VA Medical Center.
As a result, patients and families will need to start discussing such issues on their own, outside of the medical system, Sudore said.
Many people find it difficult to know what they want for dinner next Thursday night, much less whether they want to be placed on a breathing machine 10 years from now, she noted. Even if they make a decision now, they may change their mind later.
Those who choose a surrogate to speak for them when they are unable to speak for themselves often fail to inform the surrogate, Sudore said, which can place their surprised friend or family member in a difficult position.
Rather than forcing reluctant people to make advance directives, she said, clinicians can help them choose a surrogate, make sure the surrogate is informed, and help them clarify their values so they and their loved ones will be better prepared to make end-of-life decisions.
Asking patients if they want to bring their surrogate or proxy to a medical appointment can be a non-threatening way to begin such discussions, said Susan Parks, M.D., director of Palliative Care Service at Thomas Jefferson University Hospitals.
Research has shown that if a surrogate expects to have family conflicts over end-of-life decisions, the surrogate is more likely to choose life-sustaining measures, regardless of their loved one's desires, Parks said.
To avoid this, she added, families need to engage in such discussions well before an acute illness occurs.
Journalists and health professionals can assist by informing people about the burden of suffering that comes with some treatments, said Rosemary Gibson, co-author of "The Treatment Trap."
That can include tackling such questions as: "What does it mean to be on a ventilator? What does that feel like, and what's the pain level?"
Gibson argued that advance care planning is frequently no match for the "medical-industrial complex," which she said often favors unnecessary treatments no matter how costly or invasive to patients.
If people begin in their 20s and 30s to say no to overly aggressive medical care, they will be better prepared to make end-of-life decisions, said Gibson, who spent 16 years leading palliative care and safety initiatives for the Robert Wood Johnson Foundation.
"We have to recognize that nature takes its course, and we have to allow that," Gibson said. "Instead, we intervene. … We keep doing, and we don't know when to stop."
Sandy Kleffman covers health for the Bay Area News Group, a 653,000-circulation newspaper chain in the San Francisco Bay Area that includes the Contra Costa Times and The Oakland Tribune.
