Marilyn Golden, Presentation, Hartford, CT, 10-18-2013

Thanks, I’m Marilyn Golden with the Disability Rights Education & Defense Fund, and I’m glad for the opportunity to convey to you today the urgency national orgs involved in this issue feel about what could happen in Connecticut

 

Something we all need to fight against

 

It’s easy to be pulled into thinking, the philosophy of the disability rights movement is self-determination, so that has to be my bottom line. I understand how easy that is – – because I was there. Then, slowly but surely, as I was exposed more and more of the in-depth issues that lie behind the banner of choice on AS, to the things that a lot of the proponents may not want us to know, I found that my view was completely turned around before I even realized it.

I had undergone a natural evolution and come out understanding how deeply problematic this is for society as a whole, as well as for the disability community in particular.

Fortunately, the reorientation in my thinking happened to occur in time for DREDF to play a key active role in mobilizing the California disability community to oppose bills in the California legislature that, without our contribution, could well have legalized assisted suicide in 1999, and again for several years running in the middle 2000s.

Those of you here may not have the luxury of time – – because it appears that a big push for this bill in Connecticut is really right around the corner.

This is really something we urgently hope you will fight against!

 

What is A.S.?

OK, what is AS? Good to check, bec there’s a lot of confusion about what the CT bill would and wouldn’t do.

The term AS refers to a doctor prescribing lethal drugs for their terminally ill patient, supposedly voluntarily, takes for the purpose of ending their life. This is illegal today in every state in the US except Oregon (for more than 15 years), Washington State (for about 4 years), Vermont (for a few months) and with a fuzzy, maybe status in Montana. Not well known is that about half of US states have either defeated bills or referenda to legalize a.s., or have passed laws explicitly banning it.

There are a lot of other things assisted suicide is thought to be, but it’s not – good things that are already legal and no one is trying to take them away, things like:

 

Creating an advance directive that requires the withdrawal of treatment under any conditions

 

Refusing any treatment, or requiring any treatment to be withdrawn.

 

Receiving sufficient painkillers to be comfortable, even if they might hasten death.

 

All legal, all fine, all not AS.

 

Most important, if someone who is imminently dying is in significant discomfort, it is legal today in every state for them to be sedated to the point that the discomfort is relieved, while the person’s underlying disease causes a natural death. That’s called palliative sedation. (Knowing that makes a lot of people realize that a.s. is not necessary.)

 

A related point is that a.s. is not what it’s cracked up to be. For example, where assisted suicide is legal, the statistics tell us that, despite what everyone thinks, what people use it for, is not for pain (unless fear of future pain). It is usually used because of fear about the future.

 

So, there are legal alternatives.

 

Choice:

 

Back to choice and self-determination, and how to square the fact that those things ARE key bases of the dx rights movement – and yet, some 10 or 12 key national dx rights organizations, many of them among the most respected, most advocacy-oriented, and most radical boosters of de-institutionalization and other forms of self-determination, have taken positions against the legalization of AS. What gives?!

 

Yes, assisted suicide proponents frequently appeal to free choice and self-determination. But in reality, legalized assisted suicide actually diminishes individual choice and control, in a number of ways.

 

First of all, an heir or abusive caregiver may steer someone towards assisted suicide, witness the request, pick up the lethal dose, and even give the drug — no witnesses are required at the death, so who would know?

 

This is corroborated by research showing widespread elder abuse in this country. The perpetrators are often family members – spouses, partners, siblings, and adult children, easily leading to pressures on elders to “choose” assisted suicide.[1]

 

I quote Margaret Dore, a Washington State expert in elder law:

 

The Act does not state that “only” the patient may administer the lethal dose; it provides that the patient “self-administer” the dose. … [but] Someone else putting the lethal dose in the patient’s mouth qualifies as “self-administration.” Someone else putting the lethal dose in a feeding tube or IV nutrition bag also would qualify. … Someone could use an alternate method, such as suffocation. Even if the patient struggled, who would know? The[ir written] request provides an alibi…

 

By signing the form, the [patient] is taking an official position that if [she or] he dies suddenly, no questions should be asked. … in the event he changes his mind after the lethal prescription is filled and decides that he wants to live, [he] will be unprotected.

 

Also, there is danger that many people would choose assisted suicide due to external pressure.

 

The impact of pressures to choose assisted suicide was illustrated when Rob Miller, Director of the pro-assisted suicide group Compassion & Choices of Washington, commented on the death of Linda Fleming, the first reported death under Washington State’s assisted suicide law. When asked if he knew that Fleming, who was divorced, had had financial problems, had been unable to work due to a disability, and was forced to declare bankruptcy in 2007, Miller said he was unaware of all that, but that her case presented “none of the red flags” that would cause his organization to reconsider supporting her suicide request.^[2]

 

And nothing in the law will protect patients when there are family pressures, whether financial or emotional or the pressures of care-taking. There’s been a startling increase in the percentage of reported Oregon assisted suicides where “not burdening one’s family” is the reason given.

 

While the proponents of legalization argue that it would guarantee choice, assisted suicide would actually result in deaths due to a lack of choice. Real choice would require adequate home and community-based long-term care; universal health insurance; and housing that is available, accessible, and affordable—a full range of social supports largely unavailable today.

 

Fear, bias, and prejudice against disability.

 

Fear, bias, and prejudice against disability play a significant role in assisted suicide. Who ends up using assisted suicide? Supporters advocate its legalization by suggesting that it is needed for unrelievable pain and discomfort at the end of life. But the overwhelming majority of the people in Oregon who have reportedly used that state’s assisted suicide law wanted to die not because of pain, but for reasons associated with disability, including the loss of autonomy (89.9 percent), the loss of the ability to engage in activities that make life enjoyable (87.4 percent), the loss of dignity (83.8 percent), and the loss of control of bodily functions (58.7 percent). Furthermore, in the Netherlands, more than half the physicians surveyed say the main reason given by patients for seeking death is “loss of dignity.”

 

This fear of disability typically underlies assisted suicide. Janet Good, an assisted suicide advocate who worked with Jack Kevorkian in bringing about the deaths of several people with disabilities, said:

 

Pain is not the main reason we want to die. It’s the indignity. It’s the inability to get out of bed or get onto the toilet … [People] … say, ‘I can’t stand my mother – my husband – wiping my butt.’ [It’s] about … dignity.^[7]

But as many thousands of people with disabilities who rely on personal assistance have learned, needing help is not undignified, and death is not better than reliance on assistance. Have we gotten to the point that we will abet suicides because people need help using the toilet?

 

We all know that society often underrates people with disabilities’ quality of life. Will doctors & nurses fully explore our concerns and fight for our full lives?  Doctors don’t understand about pwd’s, and they see us differently than we see ourselves. And bec of massive effort to contain health care costs, there will be pressures coming from everywhere, not to spend too much money on our grandma.

 

We hear many stories we hear from pwd’s, illustrating that our lives are seen as less worth living than others——so much less that health care providers too often think death is the correct course.  They press this viewpoint on us, our families and sometimes even overrule us when we disagree.

 

Let me tell you… a story about a young disabled woman who worked for the Center for Disability Rights in upstate New York. At the age of 19, she’d had a car accident . . . . While lying in a hospital bed w/a ventilator . . . doctors would ask her mother if she was ready to “pull the plug”. ‘Why would I want to do that?’ she would ask. The doctors answered, ‘What kind of life will she have—she won’t be able to dance, walk, work, have a social life, or be independent.’” And they asked it over and over.

This young woman had a rough time medically, but eventually, she was spending hours a day off the ventilator and the doctors were still asking if she wanted to live with this condition. If she chose no, they would keep her off the ventilator and she would die, with morphine for comfort.

WHEN she returned a year later, with a power wheelchair and no ventilator, the doctors’ jaws dropped to the floor and their eyes began to fill with tears. They always meant well and thought they had been doing the right thing.

Today this woman is still working for disability rights and has a darling young daughter. We’re so glad she had the wisdom to go against her doctors.

 

This leads us to a crucial question:

Will we get suicide prevention or suicide assistance?

 

Diane Coleman, president and founder of Not Dead Yet, has written that the “public image of severe disability as a fate worse than death … become[s] grounds for carving out a deadly exception to longstanding laws and public policies about suicide intervention services … Legalizing assisted suicide means that some people who say they want to die will receive suicide [prevention], while others will receive suicide assistance – [help to die]. The difference between these two groups … will be their health or disability status, leading to a two-tiered system that results in death to the socially devalued group.”

 

One of our challenges is to explode the public myth that the only people opposed to legalizing assisted suicide are religious conservatives. Many groups across the political spectrum –left-wing and center, as well as right – oppose legalization. The American Medical Association – the AMA and its state affiliates, as well as virtually every disability organization that has taken a position, and many prominent Democrats and liberals, including Bill Clinton, Ralph Nader, and civil liberties writer Nat Henthoff. Another little known fact: about half the states have voted it down.

 

Deadly mix

 

Further, even under the best possible outcome under Obamacare, which I support, assisted suicide will still be a deadly mix with our broken, profit-driven health care system, where financial pressures already play far too great a role.

 

Direct coercion is not even necessary. If insurers deny, or even merely delay, approval of expensive, life-giving treatments that patients need, patients will, in effect, be steered toward doctor-prescribed suicide, if it is legal.

For example, patients Barbara Wagner and Randy Stroup, Oregonians with cancer, were both informed by the Oregon Health Plan that the Plan won’t pay for their chemotherapy, but will pay for their assisted suicide. Though  called a free choice, for these patients, assisted suicide was a phony form of freedom.

 

Very poor Safeguards / Data collection / monitoring: 

Even worse, in Oregon and all the other states with laws or bills that are virtual clones of the Oregon law, the supposedly stong and highly-hyped safeguards, turn out to be utterly hollow

 

For example: what we call “Dr.-shopping”

 

If a doctor refuses to prescribe lethal drugs, a  patient or family  can find another doctor who will say yes, which gets around a lot of safeguards.

 

Take the case of Oregon patient Kate Cheney, who was 85. […as described in The Oregonian in October 1999.]

Her doctor refused to prescribe lethal drugs, because he thought the request actually resulted from pressure by her adult daughter who felt burdened with care giving. So the family found another doctor, and Ms. Cheney soon used the lethal prescription, and died.

 

It’s become common knowledge in Oregon that if your doctor says no, call the main organization that supports assisted suicide – today it’s called “Compassion & Choices” but it used to be known, before various mergers and splits, as the Hemlock Society, and they will refer you to assisted-suicide-friendly doctors. They have been involved in, somewhere between 75% and 90% of Oregon’s reported assisted suicides.

 

Another big issue is misdiagnosis

 

Although proponents claim assisted suicide is targeted at a narrow group, it is extremely common for medical prognoses of a short life expectancy to be wrong. Many may be mistakenly diagnosed as terminal, but have many meaningful years of life ahead.

 

This poses a real danger to people with new or progressive disabilities or diseases. There’s lots of research showing overwhelmingly that people with new disabilities frequently go through initial despondency and suicidal feelings, but later adapt well and find great satisfaction in our lives. However, the adaptation usually takes considerably longer than the mere 15-day waiting period required by the Oregon & Washington laws.

 

Is there anyone here who, at some earlier point in your life as a person w/a disability, would have chosen a.s. had it been legal, and are glad today you did not?

 

Dr. Richard Radtke, a well-known retired academic oceanographer in Hawaii and a late colleague of mine, was such an example. Dr. Radtke had a very disabling form of muscular sclerosis for over 30 years. In the period after his diagnosis, doctors often classified him as terminally ill. He experienced severe depression for two years. Had assisted suicide been legal, he acknowledges that he would have chosen it and died way back then. But until a couple of years ago, still with an extremely limiting disability, he had retired from a long, successful academic career, was a happily married father, and the president of a charitable foundation. In his last years, he was so grateful for the length and varied experiences of his life. How many such individuals is our society prepared to sacrifice as the collateral damage from the legalization of assisted suicide?

 

Another key loophole in the safeguards – one critical for the disability community, is the risk to people with depression and mental illness.

 

Undiagnosed depression underlies nearly all requests for assisted suicide,   posing extraordinary danger to people with mental illness and depression.

 

Suicide requests from people with terminal illness, like all suicide requests, are usually based on fear and undiagnosed depression. Doctors need to recognize that, because usually, the depression can be treated. But where assisted suicide is legalized, it remains undiagnosed, and the only treatment is a lethal prescription.

 

As Dr. Herbert Hendin, M.D., a top researcher and international expert on assisted suicide and suicide prevention ((he’s the Chief Executive Officer and Medical Director, Suicide Prevention International, and Professor of Psychiatry, New York Medical College)), stated in Congressional testimony in 1996, “a request for assisted suicide is … usually made with as much ambivalence as are most suicide attempts. If the doctor does not recognize that ambivalence, as well as the anxiety and depression that underlie the patient’s request for death, the patient may become trapped by that request, and die in a state of unrecognized terror” (Hendin, 1996).

 

For example, Michael Freeland was a man who had had a 40-year history of acute depression but received lethal drugs in Oregon. Yet when finally provided high-quality medical and social services, his desire for assisted suicide vanished.

 

But doctors often unable to diagnose depression, and when psychiatric assessments happen, they are usually “pro forma,” because a doctor who thinks her patient should receive lethal drugs can “shop” for a psychologist or psychiatrist who will make a finding consistent with that view.

 

These actual holes in the highly-touted safeguards open a risk of abuse the size of a chasm

 

Sadly, not all families are happy & supportive. There are news articles every week about cases of elder and disability abuse, horrific neglect and homicide, at least half by family.

 

Financial and emotional pressures can also make people choose death.

 

Story of Thomas Middleton:

I begin these story with his abuse perpetrator, named Tami Sawyer, who was indicted for first-degree criminal mistreatment and first-degree aggravated theft, partly over criminal mistreatment of Thomas Middleton. The State or Oregon – not the part that regulates AS, by the way — maintains Tami Sawyer took custody of Middleton for the purpose of fraud. Middleton had been diagnosed with a terminal illness, moved into Sawyer’s home in July 2008, and died by assisted-suicide later that very month.

According to court documents, Middleton had named Sawyer trustee of his estate several months earlier, and had deeded his home to the trust. Middleton had instructed that the home be rented until the real estate market improved.

Instead, Sawyer listed the property for sale two days after Middleton’s death. When the home sold, the proceeds were deposited into the accounts of Sawyer’s businesses.

In Oregon, there is no investigation of assisted-suicide deaths, even with suspicious circumstances such as those surrounding the death of Thomas Middleton. There is nothing to protect patients from those who would exploit the physician-assisted suicide law in Oregon for financial gain. This story came to light, not through any assisted suicide program safeguards, but through suspicious real estate transactions.

 

Other facts:

Sawyer was arraigned in 2011, and faces charges of first-degree criminal mistreatment and aggravated theft., accused of selling Thomas Middleton’s home and pocketing the proceeds.

In 2013, Tami Sawyer was indicted by the state of Oregon for first-degree criminal mistreatment and first- degree aggravated theft.

 

DATA /oversight

 

That leads us to another key issue – these laws and bills confer no enforcement / oversight / investigation authority

 

You will be told by a.s. proponents that the OR data shows zero problems have come to pass.

 

But the problem is that Oregon’s annual reports tell us very little. In reality, we don’t know what is happening under the Oregon laws.

 

For one thing, the laws lack teeth. Doctors who fail to report giving a lethal prescription, face no penalty.

 

The State does not talk to doctors who denied a request to prescribe lethal drugs, to find out why; nor to families, to track what is really happening.

 

No form of non-compliance is monitored. The State has neither resources nor even the authority to investigate violations,  and that’s been acknowledged in some of the annual Oregon reports.

 

Further, there is an unnecessarily high level of secrecy that undermines both the public’s right to know, and any independent, in-depth research—even though the lack of available data violates medical standards that “require openness about facts, research data, and records to assess the appropriateness of treatment”, as noted experts Drs. Herbert Hendin and Kathleen Foley wrote.

 

Most egregious of all, the State of Oregon has acknowledged that after each annual report is published, the underlying data is destroyed, so no outside party can conduct objective research.

 

Assisted suicide is practiced in Oregon and Washington in secret and without oversight.

 

So-called “narrow” proposals can easily expand.

 

The longest experience we have with assisted suicide is in the Netherlands – around 40 years, since the early 70s. Congressional testimony by Dr. Herbert Hendin, international expert on suicide prevention, documented that assisted suicide and also lethal injections have become not the rare exception, but the rule for people with terminal illness in that country.

 

Over the course of these years, the Netherlands has moved from assisted suicide to lethal injections; from lethal injections for terminally ill people to lethal injections for long-term chronically ill people; from lethal injections for physical illness to lethal injections for only psychological distress, and from voluntary lethal injections to involuntary ones.

 

Dutch physicians end the lives of 1000 patients a year without consultation with the patients. Once the Dutch society accepted assisted suicide, it was not possible legally or morally to deny [lethal injections]. Nor could they deny assisted suicide or lethal injections to the chronically ill who, it was argued, have longer to suffer, or to those whose pain is psychological. To do so, was seen as a form of discrimination.

 

Conclusion

 

As the late Dr. Paul Longmore, a great sage of the disability movement and a leading disability advocate on this issue, stated, “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”