Death with dignity: a 10-year retrospective

Ten years ago, on Oct. 27, federal courts lifted the injunction against the Death with Dignity Act. A few days later Oregonians went to the polls to overwhelmingly reject the law's repeal.

Three years after initial passage, the law finally went into effect. Oregon became the only state among 50 to specifically legalize and regulate physician aid in dying. Aid in dying opponents wrung their hands, claiming tired family members, impatient doctors and greedy insurance companies would push the vulnerable into ending their lives.

Ten years later we know this isn't true. The law has delivered hope, comfort and choice to thousands of Oregonians and not one of those scary stories has materialized. In fact, Oregon stands among the best in the nation in quality and accessibility of end-of-life care.

Unlike other states, most Oregonians die in their homes, not hospitals. More than 50 percent die receiving hospice care, the gold standard of quality. Only Oregon offers a safe, legal choice to patients whose fear and distress could otherwise drive them to use a gun or other violent means to escape unbearable suffering.

The story of Oregon's success with the law is both inspiring and instructive. Doctors throughout the state responded to the new law by brushing up on pain care techniques and learning to recognize and treat depression among the terminally ill. In unprecedented numbers they flocked to seminars and courses covering these topics.

A statewide task force published a guidebook for medical professionals and the Oregon Health Division laid out clear and precise rules to document and report on the law's use. The Hospice Association dedicated itself to ensuring that no patient felt abandoned by hospice and everyone received the best hospice care, regardless of whether they also sought aid in dying.

State officials, medical researchers and even the federal Centers for Disease Control and Prevention in Atlanta geared up to study everything about practice under the law, especially the patients, doctors and families who experience it. Study after study has appeared in prestigious medical journals. We now know volumes more about why and how a person may consider or use aid in dying than we know about any of the other choices or decisions that more commonly impact and determine the end of life.

What do we know? We know many patients (about one in six) consider using the law and talk with their loved ones about it. We know they worry about the way cancer may chip away at the body and mind and leave them suspended in a prolonged state of agony and degradation. People want to die at home, but worry about leaving their loved ones with painful memories of their suffering. We know one in 50 begins the eligibility process by talking with their doctor about aid in dying.

We also know the vast majority never find themselves in the nightmare of pain and suffering they fear. Most never complete the elaborate eligibility process to request aid in dying, and many who do never ingest the medication they have obtained. Since 1997, only 292 Oregonians have died under the terms of the law. That's about one in 1,000 deaths.

This is a good thing. It means patients who request aid in dying reserve it as the option of last resort and use it only when even the best palliative medicine cannot relieve their suffering.

From an exhaustive survey of hospice nurses and social workers, we know requesting patients are less likely to be depressed, anxious or in pain than other hospice patients. Families of requesting patients are more likely to find meaning in caring for their loved one, more prepared for the patient's death and less burdened by their care than families of other patients.

We know patients who do ingest medication under the law die peacefully and gently. Most recently, thanks to a new study in the Journal of Medical Ethics, we know the law does not put vulnerable populations, like the poor and disabled, at risk.

Ten years of compelling research data has persuaded even staunch moral conservatives that opposing a medical alternative that is comforting to many and harmful to none is indefensible. Only those who cannot be persuaded by evidence continue to fight efforts to legalize aid in dying in other states.

Oregon has a great gift for the nation. It can give to other states its exploration of the previously uncharted territory of aid in dying. It can share the path it has discovered to excellence in care and comfort in choice. We must not waste Oregon's courage and vision by limiting the discovered territories to residents of only one state.

Barbara Coombs Lee is president of Compassion & Choices, a nonprofit organization dedicated to end-of-life issues. She was a nurse and physician assistant for 25 years before beginning a career in law and health policy as a private attorney, counsel to the Oregon State Senate, a managed care executive and as a chief petitioner for the Oregon Death with Dignity Act.

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