NOW: WOMEN WITH DISABILITIES
End-of-Life Choices Symposium Paul A. Spiers, Ph.D.
Bethesda, MD: October 19th, 2003 Chairman, End-of-Life Choices

As the oldest and largest right-to-die organization in North America, EL Choices supports a government which ensures that, in the event of a terminal illness, only we as individuals, our families, our health care providers, and our own deeply held beliefs will determine our end-of-life choices.

For ELChoices, Physician Assisted Deliverance is not a desperate, impulsive or irrational act, it is not a suicide in the psychiatric sense but an act of deliverance from unbearable suffering; suffering that may be pain and discomfort or that may more likely be loss of personhood for someone who has been diagnosed terminally ill. Such a person may want to control their final days and to do so with the help of their healthcare providers while including their family and loved ones, rather than being unconscious, kept alive artificially and with no voice in deciding how they wish to meet their end.

The only real objective evidence comes from OREGON where, since 1997, 198 terminally ill patients have requested to hasten their death. This is equivalent to only 40 requests per year. However, only 129 of those who requested a lethal prescription used it, which is equivalent to 26 hastened deaths per year. In other words, only 65% of those who requested a lethal prescription used it. In 2002, 58 patients requested to hasten their death and 38 did, which is equivalent to 66% but it was really only 36, as 2 of those prescriptions had been written in 2001, so it was really only 62%. This makes clear that Oregon's law is not accelerating in usage.

The fact that many patients who request a prescription then live beyond six months shows that PAD may actually lead to the lengthening of life for some of those who have exercised this option. Perhaps it helps to extend life because the patient feels stronger for having this choice available. In addition, palliative and hospice care in Oregon have become among the best in the nation since the passage of their PAD law, which may be the reason why 35% of those who have exercised the choice to hasten their death, never take the prescription.

The Oregon law has been on the books for seven years. It provides transparency and accountability to a process that so many people dread and don't understand. Oregon has provided the opportunity for its citizens to choose control of their lives at the end and have taken it away from the medical establishment. In States where there is no law and there are no safeguards, organized medicine, HMOs and disgruntled or weary family are already exercising "double effect" without any kind of oversight or protection. At the same time, HMOs and hospitals, fearing liability, routinely ignore Advanced Directives and resuscitate patients who have DNR or other written requests not to have extraordinary measures taken when they are dying. Furthermore, where this choice is not available, the elderly and terminally ill may suffocate themselves, overdose or use violent means to die because they fear a worse loss of control.

This issue is of enormous importance to the disabled. The Oregon statistics do not specifically address the issue of how many patients meeting the ADA's definition of disabled, whatever that may be, took advantage of the Law. The majority of the patients had cancer. Patients with ALS, certainly a disabling condition, accounted for less than 9% of all hastened deaths. Taking all the "other" conditions together, which may have included patients with MS or quadriplegia, the total was less than 13% and that "other" category is declining not increasing. As such, it does not appear that the Oregon law has resulted in the wholesale execution of the disabled in that state.

While it is true that none of the "official" disability organizations endorse PAD, polling data from three independent Harris samples over the last 4 years have shown that 60-70% of the disabled who were asked favor PAD. It was for this reason that the late Drew Battavia joined with others, and notably Hugh Gallagher, to form Autonomy. Their goal, to have an organization that truly represented the majority opinion of the disabled and that could be heard over Not Dead Yet and their loud and often off-topic rhetoric.

I cannot deny that the fears or concerns expressed by opponents in the disability community may be realistic but I would note that some (though probably no one in this room) feared giving women the vote, some feared legalizing a woman's right to reproductive freedom and choice, and many still fear to protect an individual's right to their own sexual orientation.
In this same way, some also fear providing the right of real choice at life's end. I cannot speak to all those fears but I can speak to what ELChoices supports and that is: providing safe, accurate and helpful information about medical, palliative and hospice care, as well as about self-deliverance, but only where allowed by law and, at the same time, advocating for laws for competent, terminally ill people, so that they can do everything they can to prepare themselves for death and avoid an end that none of us deserve.

Choices represents thousands of volunteers, mostly elderly, organized around the country because we are deeply saddened at how the medical establishment treats the terminally ill. So much pain. So much suffering. To see a person in needless agony being kept in a living grave against her wishes because the medical establishment is afraid of liability or has decided this is a natural way to die, this truly saddens me and saddens our organization. This is what we are here to help prevent. Choices is organized to provide information and improve the laws around the nation so that both the able and the disabled terminally ill can make informed choices about how their pain treatment will be managed and how their final days will be spent.

We believe that competent, terminally ill adults are in the best position to decide how their final days should be spent. We believe it is not the government's decision, or an HMO'S, or a hospital's or a doctor's. It belongs to the patient. To insure that this choice is available in more than just one state, there are two ongoing Legislative initiatives, one in Hawaii and currently in Vermont. In Hawaii, an Oregon-like bill came from legislators with the support of Governor Cayatano. In 2002 the House there voted to adopt an Oregon-style law. This was different from Oregon where the law was passed twice by popular referendum. The only reason Hawaii does not have a law is because it missed by 2 votes in the Senate but it will certainly be proposed again and will pass.

In Vermont, a group of concerned citizens started to enlist legislators and went on to enlist the support of over 200 doctors. As we are meeting here, the Vermont Medical Association is deciding whether to oppose the bill being proposed there or whether to remain neutral.

In conjunction with other Right to Die organizations, Choices is participating actively to support the legislative efforts in Hawaii and Vermont. In addition, there are a number of other states where local activists are hoping to move forward and submit similar legislation to Oregon's. This is a civil right that will be decided in this decade; these laws are coming, no matter what opponents may wish to believe. As such, the disabled community can be a part of this change, participate in the dialogue and help to ensure that appropriate safeguards are included in any new legislation or we can be left on the sidelines or out protesting in the streets where we will be unlikely to have any influence on the evolution of public policy.

Paul Spiers, Ph.D.

Dr. Spiers is a Neuropsychologist who teaches about Neuropsychology and the Law at the Boston University School of Medicine, conducts research at MIT and has a private practice providing consultation to industry and government agencies, as well as expert testimony in probate, civil and criminal judicial matters. Paul is Chairman of the Board of End-of-Life Choices, the nation's oldest and largest Right to Die organization that was formerly known as the Hemlock Society. Under Paul and former Chairman Fred Richardson, Choices adopted it's new name, expanded staffing and has embraced a new mission to focus on legislative advocacy at the State and National levels.

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