At Compassion & Choices, we believe that healthcare should be all about patient care, especially at the end of life. But too often, policy debates on care at life’s end focus on everything but the patient.

How is it possible to leave patients behind?

Just look at the healthcare insurance reform debate. Right now, as administrators in Washington, D.C., hammer out the new law’s implementation details, insurance industry executives and lobbyists push to make sure their interests come first. That’s why Congress focuses so much attention on who gets reimbursed for what and how, which federal agency oversees which part of the act, and what each section of the bill means for the industry.

Few people and organizations ask, “How can we make sure patients get what they want and need?” And even fewer advocates work to make sure that patients’ wishes are honored at the end of life.

Time and again, we see the focus shift from patients to process when care at the end of life is legislated and regulated.

Watch this short video to see what I mean. It’s from “Living Well at the End of Life,” a National Journal panel discussion I recently joined in Washington.

Compassion & Choices has renewed its commitment to work for healthcare policy that is centered on patients, not process. I’m thrilled to announce that we now have a Washington, D.C., policy office to amplify our voices in the Capital — the voices of our supporters, patients and families.

Staff in our new Washington office will track legislation as it develops and educate Congress and regulators about end-of-life issues. Our priorities will be front and center during the debates that matter most. And we’ll make sure that patients aren’t forgotten when legislators discuss healthcare at the end of life.

This is a major step forward for Compassion & Choices and our movement. The debate over our issues will never be the same and I am very excited about this milestone.

This August we heard lots of the scary stories about death panels and plans to kill weak elders and wounded veterans. Once the childish hysteria quiets down, we’re inviting adults to gather at the National Press Club, consider the many aspects of end-of-life experiences and talk – sanely and calmly – about the issues and policy choices ahead.

Unlike the recent “debate,” the Dignity & Choices symposium will not accuse individuals or governments of evil motives. No one will come under attack.

Compassion & Choices recently came under attack for supporting Medicare reimbursement for end-of-life consultations with your doctor (the infamous Section 1233). Conservative and religious pundits accused us writing the provision and setting ourselves up to provide the consultations with an agenda to shorten people’s lives. None of that is true. Commentators on national cable shows and newspapers claimed we wrote the Veteran’s Administration book Your Life, Your Choices and are its only recommended source for advance directives. None of this is true either.

This morning I received a call from a frightened young man, asking how I and my organization could be so callous as to want to persuade elders, veterans and others to kill themselves. He was surprised to learn advance directives can just as easily be used to request ventilators and feeding tubes as refuse them, and Compassion & Choices supports that choice as well. Our goal is to help people enforce their own values, beliefs and end-of-life wishes, not to dictate what those beliefs and values should be.

October’s Dignity & Choices symposium will offer an adult conversation with no agenda except the truth about the current failings of end-of-life care and the complex advocacy and policy decisions to be made. It will emphasize policies to empower people with information and opportunities for informed decision-making at the end-of-life.

• The Religious Right is not dead–is not asleep–and is bound and determined to enshrine laws that run your life from conception until death. Barry Lynn, executive director of Americans United for Separation of Church and State, will look at this movement and what you can do to resist it and preserve your own autonomy.

• Conservatives have campaigned for the “conscience rights” of physicians and hospitals to refuse treatment or inconsistent with their values. But whose ethical values should prevail when confronting a difficult health care decision, the patient’s or those of the doctor and hospital? Lois Uttley of MergerWatch will lead a panel discussing the treatment restrictions imposed by hundreds of health care facilities operated by religious entities.

• Death can be politicized, as the recent controversies have shown. While death is a natural event, cultural trends impact modern end-of-life experiences. Author and anthropologist James W. Green finds an emerging diversity of views on what death signifies and a democracy of choice at the end of life. Dr. Green will discuss How We Die Today: Ritual & Ceremony at the End of Life.

• Several members of Congress have pushed to make end-of-life care a priority in health care reform bills. It’s All About Me: Passing Patient-Centered Bills, will be an open dialogue among key Congressional staff on ensuring that patients have a voice.

• Kathryn Tucker has been the architect of cases such as Glucksberg v. Washington (in the US Supreme Court), Baxter v. Montana (in the Montana Supreme Court), and represented terminally ill patients in litigation defending Oregon’s Death with Dignity Act. Ms. Tucker will examine changes in societal attitudes toward aid in dying, and the legal and ethical issues reflected in the major state and federal case law on this subject.

• At Dignity & Choices, you won’t see religious doctrine masquerading as medical ethics, but you can hear a religious perspective on the theology of compassion from Rev. Madison Shockley, pastor of the Pilgrim United Church of Christ in Carlsbad, California. A director of The Center for Progressive Christianity, Rev. Shockley wrote recently that “Choosing how one will live until one dies is part of the free will with which we were endowed by our creator.”

• Breakthroughs in medical treatment have succeeded in curing some diseases that were fatal in the past, and in prolonging life for others who are seriously ill. But that same technology has created unforeseen and unintended consequences such as prolonging and aggravating suffering. Dr. Timothy Quill of the University of Rochester School of Medicine has focused extensively on end-of-life decision making, and will discuss the promise and perils of aggressive care.

• Plus presentations, forums and receptions with New York Times Personal Health columnist Jane Brody; Jacques d’Amboise, the former City Ballet star and founder, with his late wife, of the National Dance Institute; Dr. Elmer Huerta, former President of American Cancer Society; policy advocate and former U.S. Assistant Attorney General Robert Raben and a host of other researchers, physicians, hospice and palliative care experts, media consultants, writers and advocates.

As I have written, some national leaders apparently prefer to confine us in perpetual childhood. Will Congress conclude that American adults don’t want to know about their choices? We hope they resolve to treat us like grownups despite the childish wails of a few and provide reimbursement for consultations on end-of-life contingency planning. We hope our symposium will advance a society where each of us can make a free and independent search for what we wish in our final days.

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