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Sebelius: Patients, not doctors or government, should drive end-of-life care

Sebelius talks about the ACA and end-of-life care

Former Kansas Gov. and U.S. Health and Human Services Secretary Kathleen Sebelius spoke about the Affordable Care Act and her current work dealing with end-of-life care at the Kansas City Marriott Downtown during the Center for Practical Bioethics
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Former Kansas Gov. and U.S. Health and Human Services Secretary Kathleen Sebelius spoke about the Affordable Care Act and her current work dealing with end-of-life care at the Kansas City Marriott Downtown during the Center for Practical Bioethics

Former Kansas Gov. Kathleen Sebelius said doctors and government should back off and let patients drive end-of-life care decisions at the Center for Practical Bioethics’ annual dinner Wednesday at the Kansas City Marriott Downtown.

Sebelius said she tried to encourage that approach in 2009 as secretary of the U.S. Department of Health and Human Services under President Barack Obama by proposing a reimbursement for discussing end-of-life decisions with patients under the Affordable Care Act.

Then things went horribly wrong politically.

“I was accused of creating death panels, if you remember,” Sebelius said in an interview before her address, “and that was an attempt to actually put a payment code in a physician’s portfolio for Medicare. But it showed how volatile this issue is. The notion that government would ration care, that government would direct care, is really resisted, and appropriately resisted, by a lot of people.”

Medicare adopted the same reimbursement policy six years later with little to no pushback.

Sebelius, a Democrat, said it’s easier to avoid partisan pitfalls now that she’s left Washington, D.C. She’s teamed with former Wisconsin Gov. Tommy Thompson, a Republican and also a former Health and Human Services secretary, to co-chair the Aspen Institute’s Health Strategy Group.

The group of 23 health care experts is tasked with studying one issue in-depth each year.

The topic for 2016 was end-of-life care, and the group published a 113-page report in February.

The report focuses on five areas: planning for death (including creating legal documents outlining wishes for end-of-life care), changing Medicare to encourage better coordination among different medical providers, creating data that better measure patient preferences, looking for successful community-based models, and training more clinicians in palliative care.

Sebelius said Medicare and Medicaid should be changed so the payment structure doesn’t favor care in hospitals or nursing facilities over in-home support.

She said the medical community is prone to pushing for more aggressive care than patients actually want and cited a personal example: her mother, who was shuttled between three different hospitals in her last weeks when she would have rather been at home.

“Doctors are trained to cure and do more and apply more technology and fix things,” Sebelius said. “They may not be best suited to say, ‘Let’s figure out how to back away from treatment.’ 

Sebelius’ address came at a time when the Kansas Legislature is showing increased interest in end-of-life care issues.

The Kansas House of Representatives passed a bill in February establishing a state advisory board on palliative care, which focuses on controlling symptoms like pain in seriously ill patients. The Senate has not voted on it.

Sebelius said government has a role to play in spreading awareness of palliative care as an option, but it needs to step back at the decision-making point.

“It very much needs to be part of what happens and what choices patients can make, and very few providers are trained in palliative care,” Sebelius said. “Very few members of what might be a care team are trained in palliative care.”

The Aspen Institute Health Strategy Group is studying opioid addiction this year.

In addition to highlighting the institute’s research Wednesday, Sebelius also touted the Center for Practical Bioethics’ addition of Kathy Greenlee, a Lawrence native who was her assistant secretary at Health and Human Services. The center hired Greenlee in November as its vice president of aging and health policy.

Andy Marso: 816-234-4055, @andymarso

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