This was posted on ADAPT-CAL, an e-mail LISTSERVE on the subject of disability, as part of a continuing debate on physician-assisted suicide.
Marilyn Golden is a Policy Analyst for the Disability Rights Education and Defense Fund.
Given some of the issues about the legalization of assisted suicide that Marilyn Grunwald and others have mentioned, I would like to post some points and thoughts on that subject. I hope you will share them with everyone.
I want to thank Marilyn Grunwald for the kind words about me in her unpublished article. The thoughts below will explain why I think legalization (which is represented right now by AB 374 in the California Assembly) is a dangerous and mistaken step, especially given how our health care system functions today. Dangerous for people with disabilities – but dangerous for our society as a whole. And given the emphasis in what Marilyn Grunwald wrote, I will focus mostly on the society as a whole rather than specifically on PWD’s (People With Disabilities).
First, some general points. I can offer documentation on them if anyone wishes, but will not weigh this e-mail down with lengthy source documentation. By the way, these points have been collected by a number of people, including Paul Longmore and Catherine Campisi; they are not mine alone. After the general points, I will include the text of my recent Op Ed on this subject, which appeared in the San Jose Mercury News on March 1, 2007.
GENERAL POINTS ABOUT THE LEGALIZATION OF ASSISTED SUICIDE AND AB 374
1. A broad coalition opposes assisted suicide: Medical care providers: American Medical Association; California Medical Association; California Hospice and Palliative Care Association. Minority community advocates: League of United Latin American Citizens; La Raza Roundtable of Santa Clara County; Sacramento NAACP. Disability rights groups: California Foundation for Independent Living Centers; California Disability Alliance; Disability Rights Education and Defense Fund; and 16 other organizations representing people with disabilities. As well as organizations representing poor people and uninsured people.
2. These groups all fear the deadly mix of assisted suicide and our profit-driven health care system. The lethal prescription generally used for assisted suicide costs about $100, far cheaper than treatments for most prolonged illnesses. Pressures to cut costs by denying treatment already pose a significant danger. Legalizing assisted suicide would intensify that danger. To deny patients life-sustaining treatments while offering the “choice” of assisted suicide would subtly coerce them toward death.
3. How can California’s legislature consider assisted suicide while millions of low-income families have no access to health care? Is the legislature telling them, “We won’t provide health care, but we’ll make it easier for you to commit suicide when you’re uninsured and at your most vulnerable”? Legalization would place many people, particularly among the disadvantaged and marginalized, at significant risk.
4. AB 374 is modeled on Oregon’s flawed assisted suicide law. That law does not penalize doctors who fail to report assisting suicides. It gives the state no resources or authority to investigate violations or abuses. Moreover, the state destroys its paperwork after each annual report, making it impossible to verify those reports’ conclusions independently.
5. The just-released official Oregon report for 2006 supplies even less information than previous reports. For example, this year’s report no longer lists the number of lethal prescriptions written by individual doctors. In the past, doctors affiliated with the pro-assisted suicide advocacy group Compassion in Dying (since renamed Compassion & Choices) facilitated three out of four such deaths. The new report helps to hide that fact.
6. The Oregon law and the California bill contain “safeguards” that are merely paper protections, easily sidestepped. For example, they purport to limit assisted suicide to terminally ill people who have only six months to live. In fact, the number of days between an initial request for life-ending prescriptions and patients’ deaths has ranged as long as three years. This shows the inaccuracy and unreliability of six-month prognoses. It also indicates that people who are not terminal have been encouraged to take their lives. In the Netherlands, assisted suicide for people with terminal illness has spread to full-blown euthanasia (lethal injections by doctors) for people with chronic illness, people with mental health distress, and even depressed teenagers and infants with disabilities.
7. The Oregon law encourages “doctor shopping” for suicide. Proponents promised legalized physician-assisted suicide would occur in the context of long-standing doctor-patient relationships. Instead, many, and over time perhaps most, deaths have involved short-term relationships with pro-suicide doctors doing cursory examinations. In half the cases 1988-2004, the doctors knew the patients less than three months. The official reports identified the “Duration (weeks) of physician-patient relationship” as ranging from “0-1065.” In other words, some doctors prescribed lethal medications for patients they know for just a few days or not at all.
8. Oregon’s press has reported troubling examples of “doctor shopping,” medication failing, coercion, and deaths of people who did not meet eligibility criteria. Yet none of this has ever appeared in the official state reports. The Oregonian, the state’s major newspaper, complained in 2005 that the law’s reporting system “seems rigged to avoid finding” the answers. Its limitations keep hidden any abuses and irregularities.
9. Oregon’s law protects doctors from legal liability if they act in “good faith.” This is almost impossible to disprove. It legalizes negligence. Like Oregon’s law, the California bill does more to protect physicians from liability than to safeguard vulnerable individuals from harm.
10. Oregon’s data consistently shows that people seek assisted suicide because they fear “dependency,” “loss of autonomy,” and loss of “dignity.” These fears are conditioned by stigmatizing social mores and discriminatory practices that devalue sick people and people with disabilities. But rather than helping such persons to affirm their inherent human dignity, suicide advocates reinforce those prejudices. Dr. Nick Gideon’s, a proponent and practitioner of assisted suicide, declared, “You could palliate pain, but you could not palliate loss of independence.” [Los Angeles Times, March 11, 2007] Furthermore, if “dependency” and “indignity” justify assisted suicide, all people with significant disabilities and especially progressive disabilities will be at great risk.
11. Most people who died under Oregon’s assisted suicide law were suffering psychological distress, not intractable pain. End-of-life care specialists know that depression in most terminally ill patients is treatable, unless there is underlying psychopathology. Legalizing assisted suicide would trap depressed patients in their own requests for death, abandoning them to die in unacknowledged terror.
12. Although assisted suicide claims to support self-determination and choice, there is significant danger of coercion. Oregon’s reports indicate that some older people who feared becoming a financial or caretaking burden on their families chose death. Also, Elder abuse is rampant in the US. California’s Attorney General reports that two out of three perpetrators are family members. Such abuse can easily pressure elders to “choose” assisted suicide, as Oregon’s news media have reported. Despite extensive efforts by California’s legislature and law enforcement to deter elder abuse, assisted suicide could facilitate the ultimate abuse.
13. Assisted suicide endangers people with new disabilities or chronic diseases. People with new disabilities often feel despondent and even suicidal. But over time they typically find satisfaction in their lives. Working through this initial despair usually takes far longer than the brief two-week waiting period in Oregon’s law and the California bill. In that critical early stage, many disabled people could easily take this irrevocable fatal step.
14. In Oregon, assisted suicide is being practiced secretly, without accountability, and without real safeguards. Yet California’s AB 374 repeats the same serious flaws of the Oregon law.
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SAN JOSE MERCURY NEWS OP ED, March 1, 2007
Assisted Suicide Bill Puts Pressure on Patients to Die Sooner
Bad Medicine for California Marilyn Golden Policy Analyst, Disability Rights Education and Defense Fund (DREDF)
For the third time in as many years, a bill to legalize assisted suicide has been introduced in the California legislature. At first glance, it seems like a merciful policy. But a closer look uncovers many reasons legalization would be a dangerous mistake. For this reason, it is opposed by a broad coalition that includes many disability rights organizations, the American Medical Association and other medical groups, the American Cancer Society, the League of United Latin American Citizens (LULAC), the Coalition of Concerned Medical Professionals which does anti-poverty work in poor communities, and many other organizations. While religious groups are in the mix, the opposition to assisted suicide is a broad coalition of left, right, and center. Why such a spectrum of resistance to something that seems so humane?
Supporters of assisted suicide often talk superficially about choice and self-determination. It is crucial to look deeper. We need to think about how assisted suicide would actually function in our medical system and our society as they operate today. Once legalized, assisted suicide would have many unintended consequences. It would especially impact many people in vulnerable circumstances.
One major reason for the diverse opposition is the deadly mix between assisted suicide and profit-driven managed health care. The cost of the lethal prescription generally used for assisted suicide is about $100. That’s far cheaper than the cost of treatment for most prolonged illnesses. The incentive to save money by denying treatment already poses a significant danger. Again and again, HMO’s and managed care bureaucrats have overruled doctors’ treatment decisions, sometimes hastening patients’ deaths. This danger would be far greater if assisted suicide were legal. Denying patients access to life-sustaining treatments while offering them the “choice” of assisted suicide would subtly but coercively steer them toward death. While the proponents of legalization argue that it would guarantee choice, assisted suicide would actually result in deaths due to a lack of choice.
A 1998 study from Georgetown University’s Center for Clinical Bioethics underscores the link between profit-driven managed health care and assisted suicide. The research found that the greater the cost-cutting pressure, the greater the willingness to prescribe lethal drugs, if such prescriptions were legal. The study called for “a sobering degree of caution in legalizing [assisted suicide] in a medical care environment that is characterized by increasing pressure on physicians to control the cost of care.” Assisted suicide advocates tout the example of Oregon, which legalized the practice in 1997. But Oregon shines only if you don’t look too closely. Each year, Oregon publishes a statistical report that leaves out more than it reveals. In fact, several of these reports have admitted, “We cannot determine whether assisted suicide is being practiced outside the framework of the law.” The reports provide only general statistics, no details of individual cases. The statute gives the state neither the resources nor the authority to investigate violations. All of the information comes from doctors who prescribed the lethal drugs. Yet doctors who fail to report face no penalty. Autopsies are not required, so there’s no way to ascertain the person was actually terminally ill. The state has never reported on several prominent cases at variance with the law – these cases came to light only via the Oregon news media. Moreover, the State of Oregon destroys their paperwork after each annual report, so it’s impossible to independently verify their conclusions. The Oregonian, the state’s major newspaper, complained in 2005 that the law’s reporting system “seems rigged to avoid finding” the answers. Yet the California bill contains the same serious flaws as the Oregon statute on which it is modeled.
The bill’s absence of genuine oversight and its weak penalties will allow it to be stretched as has occurred in the Netherlands. Over the past 25 years, the Dutch approach to “death with dignity” for people with terminal illness has expanded into full-blown euthanasia (lethal injections administered by doctors) for people with chronic illness, people with mental health distress, and even depressed teenagers and infants with disabilities.
We should reject this bill as bad medicine for California.
Marilyn Golden Policy Analyst email@example.com Disability Rights Education and Defense Fund