4:50 - 5:10 pmSaturday, September 17
LK 102
Let's empower consumers to get the care they want at the end of life by giving them truth in treatment.
LK 102
Let's empower consumers to get the care they want at the end of life by giving them truth in treatment.
Compassion & Choices
People overwhelmingly say that they want to die at home, surrounded by loved ones. Their greatest desire is to minimize the burden of suffering that they will experience and their loved ones will witness.... Read more


People overwhelmingly say that they want to die at home, surrounded by loved ones. Their greatest desire is to minimize the burden of suffering that they will experience and their loved ones will witness. In consumer parlance, what they want to avoid most is to “become a vegetable” or “die in an ICU on a machine.” Most importantly, they fully expect that these desires will be met.

The reality, however, is just the opposite, with people commonly experiencing unnecessary suffering and burdensome treatments at the end of life.

The recent IOM report, Dying in America, documents this failure of medicine and points the way toward system change. But the financial and psychological incentives of medical practice present formidable hurdles to rapid change on the provider side. The good news is that leaders in the field are taking on the challenge. As Bill Novelli and Tom Koutsoumpas, Co-Chairs of the Coalition to Transform Advanced Care, say in The Roadmap For Success, “There is a path forward. [It] begins by putting patients and families first, ensuring that their values and preferences are taken into account every step of the way.”1

Compassion & Choices decided to attack the challenge from another direction. If the system needs to “put patients and families first,” what if we gave patients and families the tools they needed to put themselves first? C&C embarked on an initiative to address these problems from the consumer side of the patient/physician relationship. Working with top experts in behavior change and communication, C&C has spent over a year and more that $1 million on consumer research to develop a set of unique products and messages that will empower consumers to actively engage with their doctors in ways that simultaneously enhances the patient/doctor relationship and disrupts the status quo bias toward the “do everything” approach to end-of-life care.

Our R&D road to discovery has been anything but straightforward. While there are many tools – advanced directives, living wills, and POLSTs – and numerous communication initiatives (e.g., The Conversation Project) and even best-selling books (Being Mortal) pushing consumers and providers toward awareness and positive change, our research provided us with dramatic evidence that most of these efforts are not providing people with the right tools and messages at the right time to help them. Fortunately, our deep dive into understanding the complexity of how we humans cope with our mortality has borne fruit in a wholly new approach to consumer engagement and empowerment.

We will share with MedicineX participants the highlights of our R&D discovery journey and give them a sneak peek at the first set of products and the powerful promotional campaign we will be beta testing in Spring 2016.

Coombs Lee is president of Compassion & Choices, the nation's oldest and
largest nonprofit organization working to improve care and expand choice at the
end of life. Previously, she had a 25-year career as a nurse and physician
assistant, during which she often cared for terminally ill patients. She
attended many patients who suffered through fruitless procedures and prolonged
stays in intensive care. As an emergency room and intensive care nurse, she was
obligated to perform many painful and pointless interventions on dying

Those unforgettable experiences drove her to pursue a career
in law and health policy, and to devote her professional life to individual
choice and empowerment in healthcare. As a private attorney, counsel to an
Oregon State Senate committee and a managed-care executive, she has championed
initiatives that allow individuals a full range of choices and much more agency
in their healthcare decisions.

Within the Oregon Senate Healthcare and Bioethics committee
in 1991, Barbara assisted State Senator Frank Roberts in
his advocacy for one of the first aid-in-dying laws in the nation.
Unfortunately, the committee never approved the bill, and Roberts died of
prostate cancer in 1993, suffering the kind of slow, painful death his bill
sought to help people avoid.

In 1994 Barbara co-authored and became one of three chief
petitioners for the Oregon Death with
Dignity Act
. She served as spokesperson through two
statewide campaigns and spent 10 years defending the nation’s first Death with
Dignity law against attacks in both the judicial and legislative arenas.

In 2008, Barbara was senior advisor for the Washington State
Death with Dignity ballot initiative voters approved by an 18-point margin,
whereupon Washington became the second state to permit aid in dying. In 2009,
the Montana Supreme Court ruled in the landmark case brought by Compassion
& Choices (Baxter v. Montana) it is not against
the state’s public policy for a physician to provide aid in dying to a mentally
competent, terminally ill adult. Compassion & Choices defeated bills in Montana
that would have voided their Supreme Court ruling in 2011 and imprisoned
doctors for providing aid in dying in 2013. Under her leadership Compassion
successfully pushed the California End of Life Option Act

Barbara has been interviewed by all leading media outlets.
She has testified before the U.S. Congress. She has spoken in hundreds of
venues over the past twenty-five years. She is a seasoned traveler and tireless

 She studied literature and nursing at Vassar College and
Cornell University, and earned advanced degrees in law and medicine from the
University of Washington and Lewis & Clark College. Barbara is a member of
the Oregon State Bar.

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