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You Still Won't Know Jack

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On April 24, HBO premiers a star-studded biopic of Jack Kevorkian, a controversial medical figure who has been equally revered and reviled in the years since his nickname, Dr. Death, first became a household phrase. A cast of luminaries has been assembled by Oscar-winning filmmaker Barry Levinson, who announced in a press release, "We're not trying to glorify the character, but we're trying to give a human portrait of the man." That sounds fine and I am looking forward to watching a cranky, humorous, and moderately eccentric character begin a guerilla campaign to give terminal patients back their right to die. However, for those of us who deal with terminal patients every day, this is not the Jack we know.

While there's little doubt that he has been a galvanizing figure on both sides of the right to die movement, when it comes to his actual role in alleviating suffering, the reality is far murkier. Kevorkian's legacy has long threatened the ongoing and truly compassionate efforts of hospice and palliative medicine, a medical specialty that focuses on symptom and pain management for the terminally ill. Over the past decade, widespread acceptance of palliative care has contributed to a dramatic change in how people die. Even in America's intensive care units -- our country's most medically aggressive settings -- more than three-quarters of an estimated 400,000 deaths are now preceded by treatment limitation decisions. In 2008, 1.45 million Americans died while making use of hospice services, and according to Dr. Steven Miles, a Professor of Medicine at the Center for Bioethics at the University of Minnesota, fully eighty-five percent -- or approximately two million -- of the 2.4 million deaths occurring annually in the United States medical system are preceded by a structured decision to limit life-sustaining treatment. Throughout the nation it is now both legal and ethical for people to refuse to initiate or to discontinue life-support treatments.

Far from being their leader, palliative care practitioners consider Kevorkian to be a dangerous distraction. Yet despite this disavowal, palliative care is sometimes maligned -- primarily by a coalition of sanctity of life and anti-euthanasia organizations -- because of the legacy of Dr. Death. In the early 1990s, Kevorkian came to the public's attention after retiring from his profession as a pathologist -- a doctor who provided no clinical care, but instead performed autopsies on the dead -- to become a physician-assisted suicide activist. However, in a notorious broadcast of the CBS program, 60 Minutes, Kevorkian showed the world that he had shifted from physician-assisted suicide to active, voluntary euthanasia -- injecting a patient suffering from Lou Gehrig's disease with a fatal combination of three medicines -- a crime for which he received an eleven to twenty year sentence for second-degree murder.

Hollywood is masterful at both humanizing and capturing our sympathies for brave revolutionaries, but Kevorkian is not one of those champions. The true heroes of the right-to-die revolution are the families of Nancy Cruzan, Karen Ann Quinlan, and others, who battled in the judiciary -- including the Supreme Court -- for the freedom to avoid or stop life-support treatments and to receive sufficient medications to control suffering. By winning those battles, these patients and families eased the pain of the millions of Americans who since then have died peacefully of their terminal illnesses rather than suffer indefinitely.

The problem with Kevorkian is that he is a circus sideshow who claims to be ameliorating suffering by performing euthanasia. His grandstanding hinders the legitimate attempts by doctors and nurses to help people in pain, as we in palliative medicine are forced to mount an educational campaign to explain that physician-assisted dying or euthanasia are not the same as alleviating suffering. This confusion has changed lives for the worse -- not just for patients and their families, but sometimes for doctors, nurses, and other medical professionals who want nothing more than to ease people's final moments on earth. The impact on medical professionals can been devastating, with some unfortunate clinicians facing criminal accusations and others defensively denying patients the opportunity to receive palliative care for fear of retribution.

In the end, the extreme practices of Kevorkian have done far more harm than good to the field of hospice and palliative medicine, overshadowing and sensationalizing the helpful role that palliative medicine plays for millions of terminally ill people. And this, unfortunately, is the true legacy of Dr. Death.