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Promoting the self-determination of people with disabilities
Letters urging Dion Aroner to vote against Assembly Bill 1592
This bill would legalize physician-assisted suicide in the state of California
April 1999
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Background to the protest actionLetters written by:
Read testimony by Paul Longmore before California State Assembly Judiciary
On Friday, April 2, 1999, a group of persons with disabilities gathered to meet with Assemblywoman Dion Aroner at the Center for Independent Living in Berkeley, CA. The purpose of the meeting was to provide feedback on Aroner's AB 1592, the "Death with Dignity" Act.This Report is written by Jean Nandi, based on notes taken at the April 2 meeting. Fuller notes were supplied to the community and read by Ms. Aroner's staff, and can be supplied on request. The comments made were overwhelmingly about problems and concerns people had about the proposed legislation. These comments which included (but were not limited to) the following:
- Economic pressures could influence the choice, especially with managed care; even now doctors are pressured into not providing the care people need and it is cheaper to allow people to die than to treat them; right now HMOs are trying to give the cheapest possible care. This easily might become a substitute for quality health care.
- The bill is not needed, legislation already exists which enables physicians to keep people out of severe pain
- Under this bill, people with cognitive & developmental disabilities, or those unable to read or speak, or those who cannot self-administer medicine, or those with a history of depression, will not have same choices as others
- We worry about physicians determining the hopelessness or potential of our lives, assessing the of quality of our lives or making the correct prognosis. With the authority of psychological evaluation and deciding who is terminal, the physician is the gatekeeper. People actually LOSE control rather than gain it
- Changes in medical technology constantly redefines what may be "terminal," one is apt to pick this option when scared & told that you are terminal
- Psychological evaluations of persons with disabilities are not always accurate
- Everybody (disabled people we know) has gone through this situation at least once when we wanted to end it. Fortunately those who are here came out the other side and have different but very productive lives
- The legal definition of "terminal" is a problem, and courts already reckon persons with disabilities as being terminal; once this is law the boundaries will be pushed by those wanting to eliminate us.
- Once the bill passes, others take control over its interpretation; look at what happened with ADA
- Most people now are choosing suicide because of the fear of losing independence; for most people it is the result of prejudice or ignorance (Oregon study, if it is worth anything, does bear this out.)
- We should put the same energy into end of life care, hospice care, palliative care, etc.
- There must be mandatory training of all people in the medical profession about independent living, and in the need for maintenance care and assistance services, NOT only acute medical care
- We prefer to have universal medical care; people get sicker because our needs are not being taken care of; the lack of proper care or help frustrates people to the point of wanting to die; existing laws are not being followed which would alleviate these problems
- We need to have FULL access to health care, housing, we really don't have choices; our principle right will only be the one to end our lives
- This is not appropriately an intellectual debate, we should have no tolerance for any mistakes in what is an irrevocable decision.
- The only sanctioned activity is coercion, but physicians in good faith may include persons with disabilities among the terminal out of "compassion"
At the end of the meeting, Ms. Aroner conceded only that we might need a review board that included non-medical people.
Friday 9 April 1999
Dear Chairperson Kuehl and Members of the Judiciary Committee:I am writing to urge you and your committee to vote against this "Death with Dignity" Act. I have written several impassioned letters to Dion Aroner (I live in her Assembly District), but she has simply responded that "other people feel differently." I enclose a report on a meeting of a number of persons with disabilities which was held with Assemblywoman Aroner in Berkeley on April 2, 1999.
As a severely disabled person--too disabled to make the trip to Sacramento to speak before your Committee--I must tell you that the prospect of legislation which would permit one group of people to hand another group of people the means to kill themselves just terrifies me. Especially when the first group--the medical profession--advises the second about how long they are expected to live and what their quality of life is likely to be (I myself was pronounced "terminal" some 40 years ago!). It is even worse when the first group has a say in the kinds of treatments available to the second group. I strongly advise you to allow this scenario to play itself out for several years in Oregon, where it is now law, before considering making it law here in our state. The single study available from Oregon's first year of experience with their law is seriously flawed, and does not constitute a valid argument that there are "no dangers" inherent in such a bill.
As I pointed out to Assemblywoman Aroner, the need for this bill cannot be justified on the basis that a person may find themselves in unbearable pain at the end of life. I believe that end-of-life care can definitely be improved upon, and I am working vigorously to improve our health care overall, but California just passed an "Intractable Pain Act," and Assemblyman George Runner is proposing still another bill (AB 1226) to make appropriate treatments for pain still more readily available. Is it appropriate to create a law that would put the lives of many of us in danger in order to allow the very few whose conditions remain intolerable to end theirs?
I believe others have made the argument that stands most starkly before us: in the present climate of "managed health care," the probability of potential misuse of this proposed legislation as a cost-saving measure looms large. Do you, in our California Legislature, wish to go on record as providing a means by which people might be encouraged to end their lives in order to save our state and nation money? I thought our state and nation were organized to save lives!
Yours Sincerely,
Jean Nandi, Disability Advocate
1529 Josephine St., Berkeley, CA 94703-1168 (14th Assembly District)
phone: (510) 845-8236
Friday 9 April 1999
Dear Ms. Aroner:I am writing you to voice my objection to your proposed assisted suicide bill (AB 1592) which is scheduled for an April 20th hearing by the Assembly Judiciary Committee. Polls show that while slightly more than 50% of whites support assisted suicide, only 1 in 5 blacks support it. Is black opinion, as Columnist Clarence Page has suggested, functioning as the "canary in the mine shaft", picking up early signs of danger?
Advocates claim that a New England Journal of Medicine report on Oregon's assisted suicide law proves all is well. But a closer examination by Wesley Smith (Wall Street Journal, 2/25/99) reveals some troubling details. While advocates of assisted suicide have long argued that it should be available as a last resort to alleviate suffering, pain wasn't a factor in a single Oregon suicide. Promoters of the law contend it helps a patient maintain dignity by making death an alternative. But for the Oregon cases, worry about future dependency was in fact the primary reason the individuals chose suicide.
As a disabled person myself, I certainly understand the basic need for self-sufficiency. But like many disabled people, I've learned to see dependency not as insurmountable, but as one of the many challenges of life. For society to legitimize prescribing lethal drugs to people because they fear the unknown is unconscionable.
In the Oregon study, the New England Journal reported that, compared to a control group, the people who committed suicide had "shorter" relationships with the doctors who prescribed lethal doses. While the exact time difference is not given, media reports often show that the patient/doctor relationship was quite short. The first woman to commit suicide sought out a different doctor after her own physician refused to write a lethal dose prescription.She then went to an advocacy group which connected her to a doctor who, after a 2 1/2 week relationship, assisted her in committing suicide.
What about the things the New England study did not include? The professionals who declined to assist their patients were not interviewed. They could have provided insight into the health of the people who died. Family members were not contacted. No attempt was made to determine if the prescribing doctors were affiliated with assisted-suicide groups. Were the drugs prescribed for medical reasons or for ideological reasons? None of the patients were autopsied to determine if they had been terminally ill.
The report admits the investigators do not know if there were other unreported deaths. Because there is no penalty for failing to report an assisted suicide, most likely more deaths did occur. A Dutch report showed 59% of doctors do not report euthanasia or assisted suicide.
In the Netherlands assisted suicide occurs routinely for people who are not terminally ill. Depressed people can be killed upon request. And most chilling of all, in one out of five cases the patient did not ask to be killed. In one year alone, 1050 people died from "involuntary euthanasia."
I plan to contact all members of the Assembly Judiciary Committee and urge them to: KILL THE BILL, NOT THE ILL.
Sincerely,
Tuesday 13 April 1999
Assemblywoman Kuehl, and other members:I am writing to please implore you to vote against AB 1592 (Aroner), the so-called "Death with Dignity Act", scheduled to be heard by the Assembly Judicial Committee on April 20, 1999. This bill is not only unnecessary, but poses a great potential danger to the safety and well-being of the disability community.
One truly dangerous aspect of AB 1592, for persons with disabilities is, it delegates far too much authority for deciding who may use this law to the medical establishment. It is a known fact, especially within the disability community, doctors harbor a deep-seated bias against anything they regard as medically imperfect or diseased. Unfortunately, they usually always view us in the same clinical manner. When it comes to understanding the lives, needs, and concerns of persons with disabilities, the medical establishment is probably the greatest collective pool of ignorance and prejudice against us that exists. Despite everything we do to assert our equality and independence, the medical community persists in regarding us as "chronically ill," or in many cases according to our disability, "terminally ill." Expecting doctors to set aside their slanted view of disability while determining the suitability for any person attempting to use this new law, is ludicrous.
As a person with a lifelong disability and someone who has always been considered, by the medical community, to be "terminally ill," this bill causes me grave concern. Doctors who diagnosed my disabling condition, Muscular Dystrophy, when I was a small child, treated me as "terminal" and predicted I would die before reaching twenty (20). I was forty-three (43) on my last birthday and I am in quite good health. The idea of assigning power to this prejudiced, and very often incorrect, medical community, which AB 1592 does, scares me.
The current trends toward managed care in our health care system, presents another danger to enacting legislation like AB 1592. Health Maintenance Organizations (HMOs), like any other corporate entity, exist for the purpose of making profits. Though HMOs may appear to care about providing good medical care for their customers, the sad truth has been they place a greater emphasis on making financial gains rather than providing service. Considering the corporate mentality governing HMOs, they consider persons with disabilities, senior citizens, and the chronically ill as just more "red ink." Can we trust this type of health care system, in which profits mean so much, to never use a bill like AB 1592 as a means of eliminating any excess "red ink?"
I implore you, members of the Assembly Judicial Committee, please reject AB 1592. It presents a very real danger to persons with disabilities. Any so-called "protections," contained in this bill are too open-ended and insufficient to guarantee against any abuses that will surely occur.
Thank you!
Sincerely,
Saturday April 17 1999
Dear editor:The political economy, or power relations, determine who is impoverished, who has and who has not. It defines who is viable, who survives, who doesn't. It is without question that disabled people live on the economic margins in every country in the world. We are the least employed, the most impoverished, the least likely to advance beyond subsistence. If we talk about power in terms of economic domination and subordination, there is a definite resistance within our system by the powerful to include disabled people as equals in its political, economic and social life.
The issue of who lives, who dies, who deserves social resources and who does not, is an ongoing debate in our political economy and can have life and death consequences for disabled people. In 1996, former Colorado governor Richard Lamm drew national attention when he proclaimed that terminally ill people had a "duty to die" and "get out of the way." An editorial in the Weekly Standard (9/18/95), the voice of the GOP majority concluded, "Sick people are expensive. The dead are a burden to no one. Years ago the child had whooping cough and died. Now that child grows up to be a very expensive old man or woman. The only answer is some kind of rationing, Gingrich knows that." A survey of Intensive Care Unit Nurses found that 20 percent of the nurses had hastened the death of "critically ill" patients at least once in their careers, in some cases without explicit permission from patients, doctors, or family members (Los Angeles Times, 4/26/96).
Jack Kevorkian, chief U.S. assisted suicide practitioner, recently slid down the slippery slope between assisted suicide and euthanasia when he lethally injected Thomas Youk, a 52-year-old man who had Lou Gehrig's disease (a videotape of the event aired on "60 Minutes" in November). Kevorkian revealed his real agenda in his Written Statement to Court (8/17/90), where he upheld, "The voluntary self-elimination of individuals and mortally diseased or crippled lives taken collectively can only enhance preservation of public health and welfare." In a similar vein the 9th Circuit Court (San Francisco) in its ruling that individuals have a constitutional right to physician assisted suicide specifically targeted the handicapped as "beneficiaries," and stated that it may be acceptable for "competent, terminally ill adults to take the economic welfare of their families and loved ones into consideration" when deciding whether to live or die, and defended the use of assisted suicide to control medical costs. Doctors have applied the term terminally ill (expected to die in six months or less) to people who lived years belong their prognosis.
The political economy of euthanasia is in the background of this picture and needs to be brought into focus. We need to examine what is really happening when Kevorkian and others talk about "voluntary" self elimination. Are people who seek assisted suicide choosing death or being cornered into it by inadequate national disability policy and a lack of long term and palliative care that, in their absence, makes life so unbearable that death seems preferable to life? Will people choosing death, especially minorities, people with disabilities, women and poor people, be the victims of a health care system which is more oriented towards reaping Wall Street dividends rather than relieving pain and depression, providing comfort at the end of life - care which is costly to health corporations and state budget bottom lines?
A survey published in the February 1996 New England Journal of Medicine found that doctors are increasingly in favor of helping "terminally" ill patients end their lives. What is most disturbing is that more than 80 percent of the Oregon physicians said that finances might motivate some patient or hospital decisions raising the specter of physicians helping poor or uninsured people kill themselves to cut costs while continuing to care for those who can afford it.
Some assisted suicide advocates, such as Margaret Pabst Battin, author of Ethical Issues in Suicide, think that financial degradation is a good argument for physician-assisted suicide. She says "[assisted suicide] might be warranted for elderly people worried about the prospects of extreme old age and the possibility of being without money, food, shelter, and medication. Many elderly people are enormously afraid of being totally dependent in their final years."
What about the cultural ethics or inhumane social policy that is responsible for this dismal state of affairs? Patients are driven into poverty under the current health care system. Many who have private insurance reach their maximum benefit cap and are forced to spend down in order to qualify for public health care programs like Medicaid. Pressure is brought to bear on family members when expensive care over-reaches the family's means. But are patients who face destitution really choosing death? Or are they victims of social Darwinist euthanasia policy under which the rich can buy all the care they need while the poor must do with the bare minimum?
What about people who rely on the public purse for health care? Last winter, the Second U.S. Federal Court of Appeals [the same which ruled in favor of a constitutional right to assisted suicide above] ruled in the Desario case that Connecticut Medicaid could refuse to pay for life-sustaining medical equipment even if that policy would cause the deaths of sick or disabled Medicaid recipients. This was reversed by a higher court but it is still relevant to ask, What effect would this decision have had on the "choice" people make about living or dying? Would people who could no longer get respirators, power wheelchairs, etc. be choosing death because they wanted to die or because their quality of life has been diminished by public health care policy directives?
In September of 1998, Oregon made changes to its Medicaid policy so that the state will prioritize payment for physician-assisted suicide (the federal government will not pay for it), and physicians there reported that the state also restricted funding for a key pain medicine, Oxycontin, making this needed treatment virtually unavailable to many chronically or terminally ill patients. The state attempted to no longer pay for effective doses to seriously or terminally ill patients with diseases like amyotrophic lateral sclerosis (Lou Gehrig's disease), diabetic neuropathy, multiple sclerosis, reflex sympathetic dystrophy, and a host of painful, disabling, or fatal disorders. Physicians there reported that only cancer patients were permitted to receive funding for more than 50 mg of Oxycontin; the funding for all other patients on this medicine--whether seriously or terminally ill or not, was restricted.
Is all this not sufficient evidence to conclude that there is a direct link between physician-assisted suicide and efforts to reduce health-care spending on poor, sick, and disabled people?
In addition we must look at how people who use health care have been turned into commodities, that is, assigned value or devalued in our society according to their economic worth. For example, people with disabilities are worth something to the industry of medicine: when we visit a doctor that doctor gets paid per visit; when we go to a hospital that hospital gets paid for our stay; and when we use a rehabilitation therapist that therapist gets paid for our visits.
With the advent of managed care, there has been a payment paradigm shift. In the name of containing costs, HMO hospitals and doctors no longer get paid for individual services rendered, they get paid a flat fee. Managed care corporations manipulate fees to control gatekeeper physicians approval of expenditures on patients. For example, doctors are given bonuses for keeping costs low and often find their contracts revoked when they do not conform to HMO administrators' directives. When physicians become the guardians of HMO profits and business managers determine what is "medically necessary," it is inevitable that less will be spent on patients. Those needing the most health care will no longer be perceived as an asset, they will be seen as a liability, an added cost.
Recent research found that this payment shift has already adversely affected rehabilitation practices. 42% of HMO stroke patients are sent to nursing homes after hospital discharge (which means the cost is shifted onto Medicaid) compared with 28% of people with traditional health care insurance. The Journal of the American Medical Association revealed that critically ill Medicare patients were more likely to die within 100 days of discharge from an HMO hospital as opposed to the traditional insurance fee-for-service system (reported by Mouth, the voice of Disability Rights, March 1998).
Dr. Linda Peeno testified before congress May 30, 1996, "...I wish to begin by making a public confession. In the spring of 1987, as a physician, I caused the death of a man." Although this was known to many people, I have not been taken before any court of law or called to account for this in any professional or public forum. In fact, just the opposite occurred: I was 'rewarded' for this. It brought me an improved reputation in my job, and contributed to my advancement afterwards. Not only did I demonstrate I could do what was expected of me, I exemplified the "good" company doctor: I saved a half million dollars!" said Dr. Peeno.
Fee-for-service insurance companies may also come to view assisted suicide for their elderly and disabled policy holders as a lucrative option to making payments for lengthy hospital stays or providing home care or paying for medications over extended periods of time. Physician-assisted suicide is cheaper than long-term care. Even if Kevorkian were to charge $3,000 per assisted suicide, that would be minimal in comparison to what hospitals charge for a two-day stay or what nursing homes charge by the month.
In his latest book (Freedom to Die- people, politics, and the right-to-die movement), Derek Humphrey, co-founder of the Hemlock Society, the oldest and largest pro-euthanasia and assisted suicide group in the U.S., says that "The Unspoken Argument" for assisted suicide that will ensure the eventual passage of laws legalizing assisted suicide and euthanasia will be to save money, NOT the drive for increased autonomy (as the death with dignity slogan assures us).
Surveys have consistently found that most people would rather continue to live at home rather than in a nursing home. What has not been known until recently, however, is that the aversion to nursing homes is so strong that a new study of seriously ill people in hospitals found that 30 percent of those surveyed said they would rather die than live forevermore in a nursing home.
Research on those who have elected to die under the new law reveals that people did so over concerns about loss of autonomy or loss of control of bodily functions - fears which are not being addressed by uniform public policy like quality in home care and psychological support services to ease the transition to disablement. Instead, Humphrey's answer and increasingly that of more pro-assisted suicide liberals is to give elderly and disabled people the "freedom" to kill themselves rather than to demand a national attendant services (PAS) program be put in place that would enable elderly and disabled people to remain in their homes rather than be warehoused in institutions.
It is no surprise that long term care policy is aligned with the nursing homes which have strong state and federal lobbies. The Social Security Act (1970 changes) mandates states to provide nursing home care as an entitlement but allows PAS to remain optional under Medicaid. This bias in favor of the nursing home lobby results in a patchy system where some states choose to provide PAS while others do not, some grossly under-fund PAS while some limit the number of people served. While nursing home corporations are guaranteed reimbursement, PAS remains subject to yearly state budget cuts. The irony is that in many cases PAS is more cost effective than warehousing.
Living in a political climate that measures one's worth by economic efficiency demands that we scrutinize the "right" to die beyond a liberalist expansion of individual rights. We must look at the political economy, the timing of these court decisions. Why now, with the increase of mysterious viruses and incurable illnesses like chronic fatigue, AIDS and fibromyalgia which require costly drugs and long-term care ? Why now, with managed care corporations rationing health care, and with public health care under the budget ax? The issue of physician-assisted suicide must be viewed within the context of an economic order which is eviscerating the social contract by encouraging government to retreat from its responsibilities to the public's welfare.
We are not so advanced a society that what has happened in Holland (over 25,000 patients involuntarily euthanized by their physicians where assisted suicide is court sanctioned) cannot happen here. Judge Cooper did the right thing when she sentenced Jack Kevorkian to do time. He should have gotten life.
Marta Russell
author
Sunday 25 April 1999
Dear Assembly Member Aroner:As a woman with a disability and a public policy analyst with more than 20 years experience, I am writing to urge you to drop your Assembly Bill 1592, which would legalize physician-assisted suicide in the state of California. While I respect your desire to show compassion for those who are suffering in what appears to be the final stages of a terminal illness, the impact of this bill would reach far beyond the individuals involved in specific cases.
I know that you already have met with many individuals from the disability community and that you are familiar with the concerns many of us have about potential abuses and the effect that deeply rooted stereotypes about disability can have on a patient's desire to die. The bill's apparent restriction to cases of terminal illness is hardly reassuring in view of the fact that many of us know people who have been identified as "terminal" who went on to live full and meaningful lives for many years longer. Furthermore, some court cases suggest that disability can be treated as a "terminal illness," and a recent report on Oregon's first year under its assisted suicide law revealed that most of those who chose death did so not because of intractable pain but rather because they feared losing control of their bodily functions and autonomy over their lives. In other words, they feared becoming disabled! If the law authorizes assisted suicide based on fear of disability, how can we believe the option won't be extended to those who already are living with disabilities?
These may be familiar themes to you, and although experience in the Netherlands makes me doubt whether any safeguards would work effectively, I do respect your efforts to identify and address potential pitfalls.However, I believe the most dangerous effect your bill would have is to change the dynamics of the health-care system by affecting the way health plans and insurers make decisions about what they will or will not cover. (Please see enclosed copy of my Feb. 2, 1998, commentary in the Los Angeles Times.) I can't see any way in which legislation could address this problem.
Already, there are signs in Oregon that the process described in my article may be starting to develop. Several months ago, the Oregon Medical Assistance Program decided to restrict access to adequate doses of a strong painkiller at the same time that physician-assisted suicide was being added to the list of covered benefits. Although a strong negative reaction forced OMAP to change its position about the drug, this was not the only cutback in benefits that could be critical in a patient's decision about whether to live or to seek death.
With all due respect, I again urge you to withdraw this bill. It is likely to hurt far more people than it would help.
Thank you for your consideration.
Sincerely,
Sunday 25 April 1999
[Open letter to Dion Aroner, sent to San Francisco Chronicle]To: Dion Aroner, re AB 1592 Death With Dignity Act
Arguably our medical system is failing, leaving us uncared for at the end of life, and technology is undeniably too good at extending life beyond reason and hope. But we already have the choice of refusal, and if advanced directives and current wishes go unheard, is that not another symptom of medicine's failure? With your choice of early dying, what will be our motivation to repair or rebuild our medical supports?
You assume a "terminal" declaration will protect us. But physicians are not prescient, they only pronounce a statistical likelihood of death within a specified time, and how often they are wrong! At 17 I suffered from "incurable" cancer. Now 63, and despite a prolonged and progressive disability, I continue to find my life full of wonders and joys. Even when "expected" results materialize, who can say whether my remaining days are meaningful or happy or worthwhile? I am among the despairing who would once have reached out for death had it been so readily available, but now each day I express thankfulness for survival.
Physicians are often the last to understand truly "feasible alternatives" to death. Would not an easy choice preclude the constant and often productive search for alternatives that make life of value to oneself and to others? Rather than encouraging doctors and patients to discard lives, give us alternatives that make it possible to live with our disabling and/or painful conditions to the fullest extent possible.
Your Constituent,
Jean Nandi (Berkeley)
Friday 30 April 1999
Dear Assemblymember Aroner,As someone who has been closely involved with the Independent Living/Disability Rights movement for nearly 3 decades, I am writing to send my personal support of the letters you have received from Californians for Disability Rights, and to strongly express my own deep disappointment in your endorsement and support of AB 1592. I know that you actively courted the disability vote in the last election, and I was happy to be counted among your supporters. I must tell you that this bill runs counter to the best interests of people with disabilities.
I can only express my extreme personal dismay that you have sponsored a bill so fundamentally opposed to the rights of people with disabilities. As someone who was told 2 years ago by an Orange County Ombudsperson (for elderly persons in Orange County) that I should sign a statement authorizing non-intervention if my then 85 yr. old father were to have another heart attack because "what if he had to spend the rest of his life in a wheelchair!?", I am acutely sensitive to the ignorance of disability issues by health care professionals and of so-called "advocates" for elderly and disabled persons.
In fact, as it turns out, my father is spending "the rest of his life in a wheelchair," and the quality of his life has been tremendous. He lives independently with my mother in Leisure World in southern California. He is busy writing and receiving letters from old friends, he still composes music, and has lived to see some of his earlier compositions make it to CD status -- things he would have missed if I had followed the ombudsman's stupid advice. I shudder to think of the people whose good years have been signed away by "well-meaning" family members and "qualified" health care professionals.
I urge you to withdraw your bill.
Thanks very much,
Ken Stein
Manager, ADA Technical Assistance Unit
Disability Rights Education and Defense Fund, Inc.
