April 29, 1996 — U.S. House Subcommittee on the Constitution Concerning the Legality of Assisted Suicide, Washington DC

Chairman Hyde and members of the Committee, good afternoon. My name is Barbara Coombs Lee.

By training I am a nurse, physician assistant, and attorney at law. I appear today in my role as a Chief Petitioner of Oregon’s Death with Dignity Act, which was passed by citizen’s initiative in November 1994. The Act creates a safe harbor in Oregon’s assisted suicide laws for an attending physician to provide a prescription for lethal medication, upon repeated voluntary and informed requests from a competent, adult, terminally ill patient. The patient may then obtain the means for a humane and dignified death at the time of his or her own choosing.

The Act imposes numerous safeguards, such as repeated written and oral requests, second medical opinions, waiting periods, and consultation regarding comfort care, hospice and pain control. It also provides for documentation by the attending physician and oversight by the State Health Division. Upon constitutional challenge, the Act was found by a Federal District Court judge to fail the equal protection rational basis test, and the State is currently appealing that ruling at the Ninth Circuit.

The movement for Oregon’s Death with Dignity Act began with Oregon families that had struggled through prolonged and painful deaths and resolved to change the law. Elvin Sinnard’s wife Sarah suffered with a terminal heart condition that brought excruciating pain with any activity, including reading and talking. She reached her decision in consultation with her family and minister, stockpiled medication and learned how to apply a plastic bag. Heartened by her empowerment, she continued to live for a number of months, but gradually her suffering became too great to bear. When the day of her decision arrived, she carefully constructed an alibi for her husband and instructed him to go where he would be seen, not to return for a stated number of hours. When he returned she indeed was “at peace” but his grief was intensified at his inability to be with her when she died. In spite of Sarah’s precautions, Elvin was still subjected to a criminal investigation. The house was searched and articles confiscated, including Sarah’s farewell letters to her family. Elvin vowed “This isn’t right,” and formed an organization called Oregon Right to Die, which met in his basement.

Patty Rosen’s daughter Jody was dying of bone cancer. All the narcotics doctors could provide didn’t dull her pain and Jody pleaded with her mother, a nurse, to help her die. The day Patty finally agreed was a happy one for Jody, but complying with her request was not easy because of the drug tolerance that had developed over the previous weeks. Patty eventually succeeded, and lay next to her daughter as she died in her bed.

The problem is that medical science has conquered the gentle and peaceful deaths and left the humiliating and agonizing to run their relentless downhill course. The suffering of these individuals is not trivial and it is not addressed by anything medical science has to offer. Faced with this dilemma, the problem for many is that the law turns loving families into criminals. It separates loved ones at the end, when it is most important to be close. It encourages patients to choose violent and premature deaths while they still have the strength to act. And it forces some to suffer through a slow and agonizing death that contradicts the very meaning and fabric of their lives.

In Oregon the Death with Dignity Act received wide support across genders, ages, and political philosophies. The state Democratic party, ACLU and local National Organization of Women supported the Act as a compassionate response to the dilemma many find themselves in at the end of their lives. But our most vocal support and largest contributions came from people who describe themselves as politically very conservative. They resent a government that interferes in an intensely personal, private decision, and restricts their individual liberty. Many who would oppose a woman’s abortion option on the grounds that there is another life to be considered, see no such moral issue in assisted death for terminally ill adults.

During our campaign we argued that physicians already assist their patients with death in hidden and unstated ways. The initiative would merely bring covert, surreptitious activity into the open and add safeguards. Recent scientific evidence confirms this belief. In February the New England Journal of Medicine published a survey of Oregon physicians taken in early 1995, in which 21 percent said they had been asked for a prescription for a lethal dose of medication within the preceding year. Seven percent (7 percent) stated they had written such a prescription prior to passage of the Act, and most of these stated their patients had taken the medication. A survey of Washington State physicians published in the Journal of the American Medical Association last month revealed that 26 percent of physicians have been asked at least once for a lethal prescription or euthanasia. 147 physicians provided 207 case descriptions of patients who made requests. The physician provided lethal prescriptions to 38 (24 percent) of those requesting them and 21 patients (55 percent) took the medication and died. 15 patients (39 percent) did not use their prescriptions.

Physicians who respond to such requests do so without guidelines, without consultation with their peers, and without referral for second opinion. Improvement in these professional practices is one of the chief salutary effects of decriminalization. With open discussion of symptoms and options comes improvement in care. Since passage of the Death with Dignity Act palliative care has received greatly increased attention in Oregon’s medical community and referrals to hospice have increased 20 percent. Dying individuals and their families are relieved of their burden of secrecy, isolation and fear of prosecution.

Incredibly, some would contend that covert, illegal assistance is preferable to decriminalization. As a citizen and attorney I believe in an ordered society and I could not accept a stated policy to wink at the law. When we know that certain rare and desperate cases call for a compassionate response in the form of assisted death our democratic heritage demands that the law be consistent with that knowledge. Perhaps this is uniquely American, but it how we govern with integrity retain the consent of the governed.

I believe that one reason people like Sarah, or Jody, or Francois Mitterand choose a hastened death, is because they believe the circumstances of their deaths are very important to the meaning, the story, even the sanctity of their lives. There is something about facing death with courage and grace, with senses intact, that serves their most cherished values and spiritual needs. And I believe, quoting philosopher and legal scholar Ronald Dworkin, that “Making someone die in a way others approve, but he believes a horrifying contradiction of this life, is a devastating, odious form of tyranny.”

Source: Hearing before the Subcommittee on the Constitution of the Committee on the Judiciary.” 104th Congress., 2d session, (Washington, DC: U.S. Government Printing Office),1996, pp. 163-166.