by Marilyn Golden, [ mgolden@dredf.org ]
Executive Committee, California Disability Alliance (CDA)
Opponents worry about the potential for a slippery slope--beginning with physician-assisted dying and ending up with full-scale active euthanasia. Opponents argue that in California, with no universal entitlement to health care, a policy of physician-assisted dying has great potential for abuse. They worry that responding to powerful social and economic pressures, legalized physician-assisted dying for terminally-ill patients would extend to non-terminally ill or socially devalued persons such as the elderly, the chronically ill, or people with disabilities, where the right to die may become a responsibility to die. According to opponents, fully informed and voluntary decision making may be jeopardized by pressure from health professionals, family, third party payors, and society. Opponents also argue the potential for abuse is heightened in a time of tightening health care resources, where competition for resources occurs between old and young, and between the chronically and the terminally ill.
-----Analysis Prepared by : Geoff Long ,
-----California Assembly Appropriations Committee
-----Date of Hearing: May 19, 1999
AB 1592 is designed to provide a way out for people who are dying and in irremediable pain. Its proponents insist that it will not apply to people with disabilities and people with long-term chronic illnesses. It includes supposed safeguards to prevent abuse. Proponents insist its goal is to provide empowerment, self-control, and choice. DREDF does not believe AB 1592's limitations and safeguards will be effective, and predicts it would greatly threaten the rights of people with disabilities as well as other vulnerable groups in society. There are other ways to reach the bill's positive goals.
MANAGED CARE'S COST CONTAINMENT PRESSURE HYPERINFLATES THE DANGER
To cut costs and boost profits, HMO's and managed care bureaucrats are already overruling doctors' treatment decisions, sometimes hastening patients' deaths. AB 1592 would accelerate the decline of quality in California's health care system. The cost of the lethal medication under AB 1592 is approximately $35 to $50, far cheaper than the cost of treatment for most long-term medical conditions. The incentive to save money by denying treatment is already a significant danger; it would be far greater if this bill were passed.
NOT REAL CHOICE: AB 1592 purports to be about choice, but health care choices are never made in a vacuum. AB 1592 could actually result in deaths attributable to a lack of choices. Given the absence of any real choice, death by assisted suicide becomes not an act of personal autonomy, but an act of desperation. It is fictional freedom; it is phony autonomy.
NOT JUST TERMINAL ILLNESS: It will not be possible to limit this bill's effects to people with terminal illness. AB 1592 presumes that the medical profession is prescient and able to foresee death "within 6 months." But it is extremely common for medical predictions of a short life expectancy to be wrong. According to the National Council on Disability, "People with disabilities are often told that they or their children would not survive, or would not regain consciousness, or would not walk, or would not be toilet-trained, ... and yet ultimately find these predictions to be wildly inaccurate. " Quoting the Western Journal of Medicine, 1995, "Predictions of patients' life expectancy are particularly difficult and unreliable." Therefore, AB 1592 could affect many people who may be mistakenly diagnosed as terminal but who could recover or still have meaningful years of life ahead of them. Numerous court decisions have also blurred the divisions this bill attempts to establish, by ruling that people with non-terminal disabilities are terminally ill patients. These are the same courts that will be enforcing any law that results from this bill.
NOT FOR IRREMEDIABLE PAIN BUT FEAR OF DISABILITY: Both this bill and Oregon's assisted suicide law, on which this bill is based, are written as if to address the problems of individuals with unmanageable end-of-life pain. However, all but one of the Oregon patients who used that state's assisted suicide law during its first year wanted suicide because they feared not pain but losing functional ability, autonomy, or control of bodily functions. Similarly, Dutch law requires patients to experience "unbearable suffering" to justify euthanasia. But according to reports, more than half the doctors surveyed say the main reason given by patients for seeking death was "loss of dignity. " In other words, fears of having disabilities and needing assistance appear to be the significant factors in the actual application of existing assisted suicide policies, both inside and outside the United States.
STEREOTYPES AND PREJUDICE AGAINST DISABILITY EXACERBATE THE DANGER OF ASSISTED SUICIDE: The medical profession typically places a lower value on the quality of life with a disability than do people who are actually themselves living with a disability. Living with a disability is usually different from the stereotypes. As one person with a disability wrote, "Most of us, when newly disabled, would 'choose' to die. It is only with much effort that we begin to work to save ourselves, and eventually find that living is well worth that effort...Medical professionals frequently support the view that our lives are not worth living, and in that early period before we shake off their influence it would be all too easy to make the final choice one that is irrevocable." There is a very real threat of allowing a temporarily despairing person with a newly acquired disabling condition, or an increasingly progressive one, to select suicide, because of prejudiced projections of a "pitiful quality of life." Prejudice against disability occurs at every point people with disabilities interact with the health care system. In hospitals, many people with non-terminal disabilities are currently and repeatedly pressured to sign "do-not-resuscitate" orders and other advance directives calling for withholding and withdrawal of medical treatment. In this context, the explicit and subtle pressures toward ending life could have a much more devastating effect, if paired with a policy such as that in AB 1592.
SUPPOSED SAFEGUARDS WILL NOT PREVENT ABUSE: AB 1592 requires that doctors inform patients about alternative options, such as "comfort care, hospice care, and pain control," but there is no requirement that any patient be guaranteed access to any of those options. Moreover, doctors may not really know what alternatives are available. AB1592 also prohibits insurers from coercing patients into choosing assisted suicide, but direct coercion is unnecessary. Managed care bureaucrats are already overruling doctors' decisions about appropriate and necessary, sometimes life-sustaining treatments in order to cut costs and boost profits. Some California hospitals have already set up committees to decide when care is "futile" and should be terminated regardless of a patient's or a family's wishes. Doctors report disturbing stories of patients' whose deaths have been hastened by these practices. Given the current health system, no law legalizing physician-assisted suicide, no matter how carefully crafted, can operate fairly. Experience in the Netherlands clearly demonstrates the potential for abuse. The Netherlands has gone from looking the other way in cases of physician-assisted suicide, to looking the other way in cases of voluntary euthanasia, to looking the other way in cases of involuntary euthanasia. DREDF is skeptical that AB 1592's protections would result in adequate enforcement against extending beyond the bill's original intent, in a social context that devalues people with disabilities.
REAL CHOICES; REAL SOLUTIONS ARE NEEDED: AB 1592 does not address the fundamental issues and needs of people who are dying: pain management, palliative care, hospice care, and other respite and support, including home-based support, none of which are adequately paid for currently. Laws exist making it easier for doctors to prescribe adequate pain relief. Advance directives and requests for withdrawal of treatment already provide many options to dying individuals who want to hasten their point of death. Additional legislation, both state and federal, to encourage solutions and to fund necessary care, are also needed. Education and changes in medical practice are also vitally important. Increased palliative care training in medical schools as well as further development of palliative care as a specialty area in medicine are needed. The current climate of managed care cost containment and widespread stereotypes and prejudices about disability makes this the wrong time for AB 1592.