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The United States of Leland asks moviegoers to sympatize with Leland Fitzerald, who has killed an autistic teen out of "kindness." Read our articles.


"At times death seemed a possible solution," writes Stephanie Sugars. Read Sugars' and others' letters.


Medical killing-- not the answer

By Diane Coleman, J.D.

This article is adapted from Coleman's opening statement in a debate with Paul Spiers, Ph.D., Chairman of the Board of End-of-Life Choices, formerly the Hemlock Society. The debate was held in the cafeteria of the Vermont State Capitol March 10, 2004.

When I was six years old, my doctor diagnosed me with muscular dystrophy and told my parents that I would not live past the age of 12. A few years later, the diagnosis changed to spinal muscular atrophy with a much longer life expectancy.

Over time, I learned that respiratory issues would probably be the cause of my eventual demise. I have friends who've used nighttime ventilation for years, so I knew what symptoms to watch for, and two years ago, started using a breathing machine at night myself. I had two other friends, one in her 30's and one in her 50's, who needed the same thing. But their doctors discouraged them from it, reinforcing their fears, and either didn't know or didn't disclose what the medical journals said would happen as a result. Eventually, they each went into respiratory distress, and died within a month from infections.

What's the relevance of these personal experiences to the public debate over assisted suicide?

Many proponents of legalizing assisted suicide have accused Not Dead Yet and other disability advocates of being puppets of religious and pro-life groups who also oppose such legislation. We respect the efforts of our allies in this policy debate, but it's always been an uneasy alliance. From our point of view, this is not about sanctity of life, and we object to those who would frame this as part of the pro-life vs. pro-choice culture war. We urgently object to those on either side who would risk the lives of people already born on the rhetoric and the outcome of that war. We all deserve better than that.

We're very glad that our position is shared by many professional health care groups. But I'm pretty sure that many of our medical allies get very uncomfortable when they hear our reasons for opposing assisted suicide. Our personal experiences in the health care system are very relevant. People with disabilities live and die on the front lines of the health care system and, to be succinct, we don't trust it. Eleven national disability organizations have joined Not Dead Yet in opposing physician assisted suicide. Why? Are groups like the National Spinal Cord Injury Association puppets of the Christian right? No. Does Not Dead Yet have $21,000 a month to spend on public relations advisors like the recently renamed End-of-Life Choices group, so we were able to trick our colleagues into joining us? No. $21,000 is our annual budget this year -- if we're lucky.

Here is what drives us: People with disabilities are already in daily contact with a callous health care system that is all too ready to deny necessary health services to save money. Those eleven national disability groups have the shared and firsthand experience of a system with almost no accountability that is all too often pressuring people with disabilities to get out of the way. If the health care system were a coal mine, we're your canaries -- except we don't consider ourselves expendable, thank you very much.

Now Paul Spiers. will point out that there are many individuals with disabilities who support legalizing assisted suicide (download PDF of Spiers' remarks). He may even claim a majority, but there's an upcoming article in the Journal of Disability Policy Studies which exposes the flaws in the poll statistics his people cite. We think it's rather like the death penalty: of course there are individual African-Americans who support the death penalty, but not the organized political voice of African-Americans. The failings of the system are just too many and too obvious to ignore.

Recently I began reading Wall of Silence, a book published in 2003 about the prevalence of medical mistakes. According to the Institute of Medicine of the National Academy of Sciences, 100,000 deaths in the U.S. result from medical mistakes each year. But what's really shocking is that the health care system does not engage in a process to study and try to remedy these mistakes. A "wall of silence" goes up and concerns about liability outweigh all other obligations, medical or ethical.

Our health care system is abandoning the uninsured. Employers and the government are cutting what they provide. Health care disparities based on race and poverty are well documented. The power of physicians to decide our fate is also well-documented and growing.

A 2003 study reported in Critical Care Medicine, on patients who survived a stint in the ICU, found that physicians were poor predictors of survival, and even worse predictors of quality of life compared to the person's own assessment. Yet physicians influence what surrogates decide if we're incapacitated, and they increasingly overrule both patients and families in withholding treatment under futile care guidelines that put the doctor's negative view of our quality of life into the equation. Futility policies are really about involuntary passive euthanasia, and even the AMA published procedural guidelines for it several years ago. What I'm waiting for, though, are actual studies about the factors surrounding death through withholding of treatment, especially food and fluids. Unfortunately, studies of treatment withholding are few, and fail to ask the most pressing questions about health care economics and discrimination. Accountability. It's a problem.

As our society ages, we must instead work to improve health related services. Medical killing cannot be the answer.

This is the chaos into which some organizations, demographically among the more affluent and privileged in our society, propose to introduce a new form of legal protection for physicians and other health care providers. The primary operative provisions of statutes to legalize assisted suicide are the immunities granted to physicians. Our opponents like to say that this is about personal choice, but physicians are the actual players who decide who's eligible, who gets suicide prevention and who gets suicide assistance. In fact, it's really about discrimination based on someone's health status --lethal discrimination.

Our position is that it violates the Americans with Disabilities Act and equal protection principles. Of course, there are pages of alleged safeguards in the bill, but what good are they without enforcement provisions? Worse, anyone is immunized if they claim a good faith belief that the safeguards were satisfied, a claim legally almost impossible to disprove: not even reasonable belief, but only good faith belief, the lowest culpability standard you can get. It's pretty much a blanket immunity.

We keep hearing from the Oregon government and press that everything's going fine with assisted suicide there. But the Oregon Health Division Reports, parroted in the officially pro- assisted suicide New England Journal of Medicine, all admit that they are only collecting data from physicians who voluntarily report their assisted suicide activities, and admit that they don't know the extent of non-reporting or non-compliance with the safeguards. They admit that there's doctor shopping, but don't even identify and interview the physicians who refused to issue a lethal prescription to a patient who is not terminal or not acting voluntarily. The state reports also demonstrate that up to 466 days have passed between the request for a lethal prescription and death -- so, clearly, people with non-terminal conditions are receiving lethal prescriptions; and people are mostly requesting assisted suicide because of psycho-social issues, such as feeling like a burden on family, and fears about future loss of function associated with increases in disability. People with disabilities are very familiar with these issues from personal experience. What the Oregon approach really says is that they don't have a problem if we're driven to despair by various forms of emotional abandonment. We're not comforted.

If assisted suicide is such a good thing, if it's really about "autonomy," then why not make it available to all suicidal people? Why reserve it just for old, ill and disabled people? Assisted suicide advocates call it "death with dignity" because they see disability as profoundly undignified. The discrimination inherent in assisted suicide laws, the devaluation of old, ill and disabled people at the heart of these laws, must be rejected.

The Oregon Reports have charts and graphs and look scientific, but they are pseudo-science. It's really more like "don't ask, don't tell." The safeguards are window dressing, but no one should be fooled.

The health care system we have today and for the foreseeable future is not one in which we should introduce legalized assisted suicide. Let's create meaningful dialogue between consumers and providers, gather and analyze genuine information about the successes and failures of our health care system, and work on honest solutions, before we give the green light to any new forms of medical killing.

As our society ages, we must instead work to improve the funding and quality of health related services for throughout the life span, including pain management treatments, independent living options and consumer protections. Medical killing cannot be the answer to the challenges that await us.

Posted April 12, 2004.

Diane Coleman, J.D. is President of Not Dead Yet. She is the executive Director of Progress CIL in Oak Park, IL.

WHAT DO YOU THINK of what you've just read? Click to tell us.

Readers respond...

This is a very difficult topic to discuss, but one I've thought about for many years. As someone living with metastatic cancer for over a decade who has witnessed the death of many friends and loved ones from this disease, I'd like to have the option of assisted suicide. Having seen people outlive their bodies, especially in great pain, perhaps on life support, I know it's not something I wish for myself or anyone else. Yet, I know myself well enough to guess that assisted suicide isn't an option I'd choose...I'm much too curious about what comes next. I've already had many "medical miracles" and have faith in the unknown.

My medical miracles/trials started early - as an infant - when I survived major surgery for a large, benign growth and have continued through a teen-age diagnosis of a rare genetic disorder - a cancer syndrome. I've had many surgeries, hospitalizations and treatments, so am well aware of the limitations of medicine to cure all ills, even if funding is available. In fact, some of my daily disabilities are iatrogenic - caused by treatment.

Sometimes I wonder if there are different types of disability. Before cancer my life was limited by pain, fatigue and recurrent medical problems. At times death seemed a possible solution. Like most cancer patients, since diagnosis I've struggled to stay alive. Oddly, the more serious diagnosis of a life-threatening disease gave me a restored faith and interest in life. But it's cost me my innocence. I now realize both life's preciousness and death's deadly suffering.

Because I've lived my whole life with medical problems (both physical problems and dealing with the medical system), I think I'm more fortunate than a well-until-now person recently diagnosed with cancer. I've learned patience the hard way and am much clearer about medical risks/benefits and life & death. If I were defined solely as a medical being (not a human being), my life might seem intolerable to others. Fortunately, oncologists and the others who treat cancer seldom give up on patients and, if anything, over treat.

My sense is that many patients with terminal diseases want the option for assisted suicide. The reasons they do are complex and do include medical prejudice against disability and financial concerns, but also fear of pain, dependency and other suffering. Just as it is important for parents of newly diagnosed, disabled children to meet adults with their child's disorder, it's important that newly diagnosed cancer patients meet others with cancer and long-term disabilities.

It is too easy to underestimate the human capacity to endure and even thrive in the face of all odds. Hopefully the option for assisted suicide empowers the patient when all else has failed, so that the door to death and out of pain can be opened. Until then there is always the possible of miracles, medical and other.

Stephanie Sugars, Santa Rosa, CA

Imagine for a moment the family whose son was just in a car accident and is now in a coma, brain dead, and perhaps, if he lives, will need life support for the rest of his life, on top of costing the family thousands of dollars every day he remains in the hospital. Aren't cases like this, when the family decides to "pull the plug," justified?

What about a burn victim, with severe burns covering 95 percent of his body? Surviving may mean loss of fingers and toes, limbs, and overall functionality, and always means a sentence of extreme pain extending well into the future. In severe cases, the person can be grotequely disformed, and will require many years of extremely painfull skin grafts. In such cases the doctors may require informed consent as to whether to attempt to save the patient, as he would surely be subject to an extremely painful future.

But usually doctors, before such questions can even be asked, adopt a we-must-do-everything-we-can attitude. This is writtten about in medical sociologist Rose Weitz's "Watching Brian Die: The Rhetoric and Reality of Informed Consent".

I am responding to the it's-always-wrong attitude that seems to be be part of Coleman's article. With modern medical technology, we are now able to extend the life of even the most horrifically injured patients, but the assumption that we therefore should, in every case, is sometimes inhumane.

Dan Heard, Tucson, AZ

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