Five years ago in Massachusetts, the right to autonomy in one’s body went down to defeat in a vote related to irrational fear by some disability rights advocates working through the activist group Not Dead Yet. Their position was that they would be compelled or coerced into ending their own lives if the initiative passed.
Massachusetts was voting on a Death With Dignity (DWD) initiative that would have made it the third state (DWD laws have since passed in Vermont, California, and Colorado) to adopt a law that recognizes the right of terminally-ill persons to hasten their own deaths with self-administered lethal drugs prescribed by their physicians to end their suffering. The prescription would be available only after many precautions, a process followed in the five states and the District of Columbia that have DWD laws (though the District of Columbia’s law is now under serious attack by Congress). Montana allows physician assistance in dying by judicial decision, without the regulation of a DWD law.
The Massachusetts proposal was modeled after the 1997 Oregon law, the first Death with Dignity Act (DWDA) adopted in the US. There is no credible evidence that this law has been abused according to the reports made each year by the Oregon Public Health Division. This makes the Oregon law the best evidence to refute the unfounded allegations of those opposed to right-to-die laws.
From the time the Oregon law took effect in 1998, through 2016, 1,127 Oregonians have ended their lives using the law. During this same time, 622 others obtained the prescription drugs but had not used them by the end of 2016.
The reasons people used the law are illuminating when evaluating the claims of the Not Dead Yet activists. Oregon’s 2016 Public Health report noted that the three most frequently mentioned reasons for using the law were “decreasing ability to participate in activities that made life enjoyable (89.5%), loss of autonomy (89.5%), and loss of dignity (65.4%).” These appear to be the same top-most concerns expressed by others since the law took effect. About 79% of patients who used the DWDA in 2016 had some form of terminal cancer, while those with amyotrophic lateral sclerosis (ALS) and heart disease made up 13.6% of people who used the law (6.8% for each group).
The context surrounding the use of Oregon’s law makes clear that many of the fears of disability rights activists are unfounded. The Public Health report reveals that 88.6% of patients who used the DWDA in 2016 died at home; 88.7% were enrolled in hospice care either at the time the DWDA prescription was written or at the time of death. Excluding DWDA patients whose health insurance status was not known, 99.2% had some form of health care insurance. It is highly unlikely that anyone used the law because their health care was inadequate.
These data have been fairly consistent throughout the years since the DWDA was enacted in Oregon. Undoubtedly, Oregon’s health care system, especially its hospice and palliative care initiatives, has been a primary reason that the law has not been used by more people. An apparent and notable benefit of the law has been an improvement in Oregon’s end-of-life care, especially pain control, since the law’s implementation in 1998.
The similar law proposed for Massachusetts was only narrowly defeated – 51% to 49%. Opposition came mainly from the Catholic church and Not Dead Yet. The arguments made by the Catholic Church were mainly religious. As a basis for public policy, the religious views of one church are a poor substitute for considered judgment and rational, nonsectarian principles. But the position of disability rights activists against the Massachusetts Death With Dignity proposal created even more dissonance for me.
To suggest that disabled people can’t make their own decisions about their lives and their deaths offends my ethical values respecting personal autonomy, and it is belied by my own experience.
Disability rights have been a personal focus all of my adult life. For nearly forty years as an attorney, I was professionally involved with promoting and securing the rights of the disabled. In my work with a social services agency for seven years before attending law school, I worked for the rights of the disabled. In recent years, I cared for my disabled parents in my home for several years before their deaths.
I have supported the Death With Dignity movement for twenty-five years, not because I think any individual should end her or his life, but because I support the right of all people to make that choice for themselves.
In the early 1990s, I became involved in the Death With Dignity movement, first by helping to organize a chapter of Hemlock in the Austin, Texas, area, then in support of Compassion & Choices (the successor to Hemlock through a merger), and now with the Final Exit Network. I have favored death with dignity laws because I support the autonomy and rights all people should have to make important decisions about their lives. I have not seen this issue as creating conflict between the ideals of autonomy for each individual and disability rights. For me, the decision to end one’s life to alleviate one’s own suffering is purely an individual decision. But that’s not how the Not Dead Yet disability rights advocates see it.
Many of the arguments made by Not Dead Yet and others in Massachusetts focused on how Oregon carries out its DWDA, according to Melissa Barber, an Electronics Communications Specialist with the Death With Dignity National Center. The Not Dead Yet activists argued that doctors can’t accurately predict when a patient will die, that there isn’t a requirement for people to tell their families they’ve requested the medication, that there’s no required psychological evaluation, and that patients who request the medication might not talk to hospice and palliative care professionals. Others have argued that some people in Oregon who have used the DWDA to end their lives were coerced into doing so by family members who wanted them dead.
But all of these arguments are false or misleading, as I will explain in PART 2 next week.
