While Compassion and Choices is gearing up for a new year of assisted suicide advocacy, its President, Barbara Coombs Lee, has announced that their proposed legislation will no longer include the “needless and intrusive burden of government reporting.”

I’ve always had problems with the Oregon “Death With Dignity Act” Reports, and now the Washington Reports (2009 and 2010) as well. They’ve provided the appearance of scientific data, but little substance. They leave the most significant questions unasked and unanswered, mostly providing an annual excuse to announce through the press that everything’s fine, no problems, nothing to see.

To make her case for eliminating those pesky reporting requirements, Coombs Lee provides a glowing portrait of the experience with legalized assisted suicide to date: “Thousands of patients find comfort every year knowing they do not have to suffer unbearably. No evidence exists of anyone harmed.” What she omits is that no evidence exists of anyone not harmed either. As the Reports have repeatedly admitted, the state is unable to assess the extent of under reporting and noncompliance with the law’s requirements (see, e.g. Second Year report, page 12).

Coombs Lee also claims that the years of report data have disproven what the opponents of legalized assisted suicide allegedly believed, i.e. that “catastrophe would befall Oregon and medical practice would suffer, but the opposite occurred: End-of-life care is robust, thriving and increasingly patient-centered in Oregon.” Others cite evidence and studies that contradict this claim. (See, e.g., Hendin and Foley, Physician Assisted Suicide in Oregon, Mich Law Rev June 2008.)

More importantly, in terms of state health care policy, the disability community has always been concerned about the fact that assisted suicide costs a lot less than ongoing health care. People used to claim that money would not be an issue, but people with disabilities have long been denied many forms of needed health care for cost reasons (e.g. therapies that maintain rather than improve function are almost always denied coverage; adequate home and community based long term care is often denied). People who claim that cost would never be an issue are naïve, privileged, dishonest or some combination of those.

Eventually, with increasingly tight state Medicaid budgets, the Barbara Wagner case came to light, involving a letter from the State of Oregon denying cancer treatment but offering assisted suicide. Coombs Lee doesn’t even try to navigate a discussion of this case, or the impact of the growing crisis in government funded health care on people’s so-called “choice” for assisted suicide.

Among the issues that are revealed in the Oregon Reports is the low incidence and downward trend in requests for psychiatric consultations by doctors who issue lethal prescriptions. The assisted suicide law uses the word “counseling” but defines it, not as some type of supportive talk therapy, but as consultation “for the purpose of determining that the patient is capable and not suffering from a psychiatric or psychological disorder or depression causing impaired judgment.” Let me clarify the legalese on this point: a person who has depression may still be eligible for assisted suicide if a physician or, upon referral, a psychiatrist or psychologist says it does not cause impaired judgment.

Coombs Lee assures us that she really cares about this issue: “For years, when reporters asked what I would change in the law, I replied ‘one comma,’ to clarify that impaired judgment from any type of mental dysfunction disqualifies a patient from making a request.”

This so-called psychological “safeguard” avoids the bigger questions: who actually judges whether judgment is impaired, and how? In 92.5% of the Oregon cases, the physician who issued the lethal prescription rendered the determination that judgment was not impaired, even if they diagnosed or suspected depression. Studies show that most physicians aren’t able to diagnose depression. It appears to be anyone’s guess how they assess whether depression causes impaired judgment, and whether the desire for a lethal prescription is the product of rational or impaired judgment. Even forensic psychiatrists seem to doubt their ability to adequately assess competence to choose assisted suicide.

One might suspect that, for healthy people, the desire for a lethal prescription would be seen by many professionals, in and of itself, as proof of impaired judgment, while this would not be the case for people with significant health or physical disability issues. Basically, if that’s the case, we would be talking about circular reasoning here.

This whole line of thinking in the psychology profession has been promoted by Jim Werth, a prominent pro-assisted suicide psychologist who has worked with Coombs Lee. It waves a professional wand over understandable human fears and feelings about aging, illness and disability so that these emotions can be classified as “rational” without addressing their roots in social conditioning, social stigma and societal neglect of people with expensive health and disability-related needs.

Coombs Lee’s assertion that the assisted suicide reports validate her stated belief that “nothing could override doctors’ drive to cure disease and prolong life” is nothing short of ludicrous. Mortality statistics alone make it absolutely clear that many doctors’ drive to prolong life is easily overcome by lack of insurance coverage. It’s also well established that at least some doctors are willing to deny life-sustaining health care and overrule an individual’s expressed decision to receive care under futility policies based on subjective standards that amount to quality of life judgments.

It would be interesting to know a bit more about the doctors who issue lethal prescriptions in Oregon, Washington and, according to C&C, Montana. It’s been reported that Compassion in Dying (which later merged with the Hemlock Society/End-of-Life Choices to become C&C) initially claimed that 75% of the doctors issuing lethal prescriptions were affiliated with the organization (see Hendin & Foley, page 1628). But the extent to which doctor shopping for assisted suicide leads to C&C’s doorstep is another issue not covered in the reports.

However, the reports do highlight some key disability issues. First, they document for each year the minimum and maximum number of days that lapsed between the date of an individual’s first request for assisted suicide and his or her death, from a low of 15 to a high of 1009. The Oregon Reports thus demonstrate that some people who received prescriptions were not terminal (i.e. lived longer than 180 days). Inexplicably, the number of people who did not die within six months of their request for assisted suicide is not in the Oregon Reports. There is no indication that the dispensing of lethal prescriptions to people who proved not to be “terminal” under the law’s six month criteria was ever the subject of discussion, investigation or remedial action in any form.

Coombs Lee says, “Our work to craft subsequent Death with Dignity Acts and aid-in-dying policies reflects the wisdom gained from practice.” To date, the biggest change in the crafted bill language showed up in the New Hampshire bill, which defined “terminal” to mean “an incurable and irreversible condition, for the end stage of which there is no known treatment which will alter its course to death, and which, in the opinion of the attending physician and consulting physician competent in that disease category, will result in premature death.” That would make a lot of us with disabilities “terminal” no matter how many years of life a doctor predicts we have left.

But the most significant disability issues revealed in the OR and WA Reports are the reasons physicians check off on the multiple choice reporting form for why a lethal prescription was requested, deemed appropriate and granted. Five of the seven reasons listed are disability issues, which appear to be accepted as appropriate without any need for definition, examination, question or required steps to address and alleviate them:

A concern about…

…the financial cost of treating or prolonging his or her terminal condition.

…the physical or emotional burden on family, friends, or caregivers.

…his or her terminal condition representing a steady loss of autonomy.

…the decreasing ability to participate in activities that made life enjoyable.

…the loss of control of bodily functions, such as incontinence and vomiting.

…inadequate pain control at the end of life.

…a loss of dignity.

From a disability rights perspective, nothing more clearly demonstrates the emptiness of the purported safeguards in the assisted suicide law. What the reporting form and physician responses show is that the law’s rather privileged proponents are determined to have doctors fully immunized for giving them an easy and aesthetic escape from disability. In fact, they are so determined that they have no problem with the certainty, based on the reports themselves, that non-terminal people have died from lethal prescriptions. They are so determined that they have no problem with the certainty that people have died without any evidence that an attempt was made to address their reasons for requesting the prescription by any means other than a lethal prescription (e.g. providing home care to someone who felt like a burden on family members).

Finally, as attorney Margaret Dore has pointed out, the law contains no standards that apply at the time the lethal dose is ingested, and the reports contain nothing to address the concern that a third party could administer the drugs without the individual’s consent. Given the documented prevalence in society of elder abuse by family members (see 1998 and 2009 studies), and the under-investigation of elder homicide, the reports leave a gaping hole in our knowledge of what happened to each individual.

But even these skimpy reports are better than nothing. They point to the gaps in data. And they suggest to the physicians issuing lethal prescriptions that someone might be looking, and someone might refer an obvious problem for investigation.

Coombs Lee offers Montana as a “different regulatory model”, one without reporting requirements, but noted in an earlier blog: “The Senate floor vote leaves responsibility to develop the standard of care for aid in dying with Montana’s medical community.” Unfortunately, there’s no evidence that medical self-regulation is any more effective at protecting the public than Wall Street self-regulation.

Eliminating reporting requirements is, substantively, a first step toward deregulation. Instead, the reporting requirements should be enhanced so that the unanswered questions and the underlying anti-disability bias in the law will no longer slide so totally under the public radar. – Diane Coleman