We no longer fear quality end-of-life care

July 13, 2016

This blog originally appeared in the July 13, 2016 edition of The Hill.

“Death Panel.” Go ahead, say it three times: “Death Panel. Death Panel. Death Panel.” Did Beetlejuice, Candyman, the Abominable Snowman or another monster appear? No? Didn’t think so.

A lot has happened in our national dialogue about end-of-life care in the past few years since opponents of the Affordable Care Act used the term “death panel” to demonize a bill provision to pay physicians for engaging in conversations with patients about their preferences for end-of-life care. As a result, lawmakers struck this provision from the Affordable Care Act to ensure its passage in 2010. Five years later, the Centers for Medicare and Medicaid Services (CMS) approved a virtually identical regulation last fall. There was no political outcry about it.

Most of the credit for the change in public opinion when it comes to discussing end-of-life care belongs to those of us who have witnessed our loved ones suffer from nightmarish treatment at the end of life. We are demanding reforms to our medical system because it has subjected our loved ones to futile or unwanted medical treatments that only prolonged an agonizing dying process, ignored their healthcare preferences, and failed to advise them about palliative care options to provide comfort and reduce suffering.
People are beginning to think more about these kinds of various end-of-life scenarios.

  • If I undergo a round of chemotherapy with advanced cancer, what will the impact be on my quality of life and my family?
  • How will it impact what is most important to me when I have such limited time?
  • Will I be able to pass away in a setting of my choice, surrounded by loved ones, or will I be alone in a hospital intensive care unit hooked to tubing in a comatose state?

Fortunately, Medicare is making strides to help medical professionals align their values — and their patients’ — with their paycheck. For example, the new Medicare reform law, The Medicare Access and CHIP Reauthorization Act, should provide healthcare providers with financial incentives to provide higher quality care, not necessarily a high volume of care, so patients receive the medical treatments they want, no less and no more.

In addition, there are numerous bipartisan bills designed to improve end-of-life care now pending on Capitol Hill. The Care Planning Act would pay healthcare providers for advanced illness planning and coordination services for Medicare beneficiaries with certain advanced illnesses. The Compassionate Care Act would increase training opportunities for healthcare professionals who are providing end-of-life care. The Removing Barriers to Person-Centered Care Act waives burdensome Medicare regulations so healthcare providers can take better care of people with advanced illness.

We need to keep the reforms and conversations going. Whether Americans live in an urban or rural environment, they need much greater access to palliative care at the local level and a suite of comprehensive options at the end of life. They also need education about their palliative treatment options throughout advanced illness to prevent unwanted medical treatment and provide assurance that medical professionals will honor their advance planning documents.

End-of-life care should default to a model that embraces patient-centered care so people understand the full impact of treatments and procedures. And this type of care should be provided no matter what ZIP code we live in, what the color of our skin is, which faith or values we subscribe to, or how much money we have in the bank.

Mark Dann is federal affairs director for Compassion & Choices, the nation’s largest nonprofit organization that advocates expanding options for end-of-life care with 450,000 members nationwide. Sean Crowley is media relations director for Compassion & Choices. He also is a former press secretary for U.S. Rep. Sander Levin, D-Mich., the ranking member of the House Appropriations Committee, which has jurisdiction over federal healthcare programs.

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VICTORY: Colorado Gov. Jared Polis signed the improved End-of-Life Options Act.