Testimony of Diane Coleman (of Not Dead Yet) before Congressional Committee
Not Dead Yet
When I was six years old, my doctor told my parents that I would not live past the age of 12. A few years later, the diagnosis changed and so did my life expectancy. Over time, I learned that respiratory issues would probably develop. I have friends who've used nighttime ventilators for years, so I knew what symptoms to watch for, and three years ago, started using a breathing machine at night. I had two other friends in Nashville, 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. At an early age, they each went into respiratory distress, and died within a month from infections. A number of my other friends have been pressured by hospital employees to sign do-not-resuscitate orders and other advance directives to forego treatment, coupled with negative statements about how bad it would be if they became more disabled. Frankly, I'm becoming worried about what might happen to me in a hospital if I have a heart attack or other medical crisis. I have appointed my health care proxy, but will the decisions I have entrusted to him be followed by my health care providers? I am not at all convinced that decisions to live are any longer treated with the same respect by health care providers as decisions to die. In fact, I am sure they are not.
Nine years ago, I was on my way to testify before the House Constitution Subcommittee about the opposition to legalized assisted suicide coming from national disability rights organizations. Many of us were worried about Jack Kevorkian, whose body count was 70% people with non-terminal disabilities, and we were worried about two Circuit Courts declaring assisted suicide a constitutional right. We had begun to think that we needed a street action group like ADAPT to address the problem, and it was actually the head of ADAPT who thought of our name, taken from a running gag in Monty Python and The Holy Grail, Not Dead Yet. From our viewpoint, assisted suicide laws would create a dangerous double standard for society's response to suicidal expressions, an unequal response depending on one's health or disability status, with physicians as gatekeepers. That sounds like deadly discrimination to us and, frankly, we've been disappointed that the U.S. Dept. of Justice didn't use our civil rights law, the Americans With Disabilities Act, to challenge the Oregon assisted suicide law. Like other minority groups, we feel that discrimination is best addressed on the federal level, and states rights have too often meant states wrongs. To date, eleven other national disability rights organizations have adopted Not Dead Yet's position opposing legalized assisted suicide.
It wasn't long before the problem of non-voluntary and involuntary withdrawal of food and water also moved onto Not Dead Yet's radar screen. Before Terri Schiavo, there was Robert Wendland in California. Both his wife and mother agreed that Mr. Wendland was not in a persistent vegetative state, and that he had not left clear and convincing evidence of his wishes. Nevertheless, his wife argued that she should be able to remove his tube feeding anyway, and Dr. Ron Cranford was on the scene to support her. A state statute, based on a national model health care decisions code, gave her the right to starve and dehydrate him, and forty-three bioethicists filed a friend of the court brief in agreement. Ten disability rights organizations filed against the general presumption that no one would want to live with his disabilities, being used to justify lowering constitutional protections of his life. Ultimately, the California Supreme Court agreed with us that his life could not be taken without clear and convincing evidence of his wishes.
By the time the Schiavo case reached major national attention in 2003, twenty-six national disability organizations had taken a position that Terri Schiavo should receive food and water, due to the highly conflicting evidence of her wishes and the fact that she had not chosen her own guardian. Attached to my written testimony is a three page statement issued by twenty-three such groups in October 2003, and a more recent article co-authored by Steve Eidelman, head of the Arc of the United States, and Stephen Drake, research analyst for Not Dead Yet. We were deeply disturbed to see court after court uphold questionable lower court rulings. This time, 55 bioethicists supported the removal of food and water. We were also disturbed that the court allowed most of Terri Schiavo's rehabilitation funds to be spent on her husband's lawyers, that she was denied a properly fitted wheelchair, a swallowing test, swallowing therapy, the potential for oral feeding, speech therapy, and the freedom to leave the hospice with her parents, even temporarily. And we were concerned that adult protective services did not intervene, and the state protection and advocacy agency tried but proved powerless. It would appear that the prevalent prejudice that no one would want to live like Terri Schiavo translated into her guardian's unfettered right to treat her at best as a prisoner, at worst as though she was already dead.
Nevertheless, the perspectives of such prominent national groups as The Arc of the United States (formerly the Association for retarded Citizens), the National Spinal Cord Injury Association, the National Council on Independent Living, and many others were consistently ignored by most of the press, as well as the courts.
Unfortunately, the anecdotal evidence suggests that Terri Schiavo's case may be the tip of a very large and almost fully submerged iceberg. I've been a health care advocate for a couple decades, often joining street protests against government health cuts. One mission of the end-of-life care movement is a good one, to educate health care providers about how to provide good palliative care, but another mission is to shape public policy on health care. It appears that a certain line of thought in bioethics has pretty much taken over the policy-making work. This line of thought involves a lifeboat approach, deciding who gets thrown out.
When we analyze, why have the pro-life and religious advocates received such disproportionate attention, we are forced to conclude that disability rights advocates don't fit a script that everyone else seems determined to follow. For the last three decades, certain bioethicists have told the press and the public that euthanasia is about compassionate progressives versus the religious right. Never mind that these bioethicists are actually talking about the legal parameters for statutory guardians and health care providers to medically end the lives of people with disabilities on a discriminatory, non-voluntary or involuntary basis. Never mind that it takes more documentation to dispose of our property than to dispose of our lives. Concerned disability groups don't fit the script and so we have been marginalized or ignored entirely.
Here's how I'm beginning to look at things. The far right wants to kill us slowly and painfully by cutting the things we need to live, health care, public housing and transportation, etc. The far left wants to kill us quickly and call it compassion, while also saving money for others perhaps deemed more worthy.
The lifeboat bioethicists who have shaped this debate apparently think of themselves as progressives, but they never seem to discuss cutting unnecessary health care marketing costs or profits before cutting lives. My sister recently started a new career as a medical assistant at a practice with 25 doctors in Michigan. She said that four days out of five, she doesn't have to buy lunch because it's catered in by pharmaceutical companies. Marketing costs. But rather than spending all that professional brain power on conquering the waste and inhumanity of a profit-driven health care system, these bioethicists are pushing new health care decisions laws to kill disabled people who aren't going to die soon enough for their taste without a little push.
Why make it easier for guardians to refuse food and water on behalf of persons who cannot speak for themselves? In a l983 article, over two decades ago, reflecting on the possible outcome of this food and water debate, Daniel Callahan, then director of the prestigious Hastings Center, wrote that "...a denial of nutrition, may, in the long run, become the only effective way to make certain that a large number of biologically tenacious patients actually die." He further predicted, "Given the increasingly large pool of superannuated, chronically ill, physically marginal elderly, it could well become the nontreatment of choice." [Daniel Callahan, "On Feeding the Dying," Hastings Center Report, October 1983, p. 22.] The script was written long ago.
And please note, many people in nursing homes are on feeding tubes not because they can't eat orally, but because there are not enough staff to help them eat. One study also found that in for-profit nursing homes, African-Americans with dementia will be taken off hand feeding and put on a feeding tube sooner in the disease process than their white counterparts. Abracadabra, they're on "life support," the kind that can be removed. One of the leaders of the end-of-life care movement, Dr. Ira Byock, was interviewed by Ragged Edge Magazine, a leading disability rights publication. He stated that Partnership for Caring and Last Acts, national leaders in the movement until they disappeared under a cloud late last year, had excluded the disability perspective, and that this exclusion was "deliberate and irresponsible." What's especially disturbing is that they had fifteen years and hundreds of millions in funding from prominent foundations, and set up surrogate decision-making protocols to end the lives of people with intellectual disabilities, without seeking the input of such individuals and the established organizations that address issues of self-determination for people who have less typical ways of receiving, processing and communicating information.
What might other disability groups have brought to the discussion table?
I recently read a journal article about the problems with advanced directives. A consistent finding in several funded studies is that people change their minds about what treatments they want, and what level of disability they will accept, as they move through the experience of having increasing disabilities. The disability community has a response to that, to use a popular phrase, "well, DUH."
And you may have seen reports of a new Alzheimer's study last year. It confirmed previous studies that caregivers have a lower opinion of their relative's quality of life with Alzheimer's than the persons themselves have, and found an explanation for the discrepancy. It seems that the caregivers project their own feelings of the burden of care-giving onto the person they care for. Once again, the disability community response is "well, DUH." And these are the very caregivers who make life-ending decisions.
And if that's not enough conflict of interest for a statutory guardian, the Kentucky Supreme Court ruled in 2004 that a public guardian may deprive life sustaining treatment from a man labeled mentally retarded, despite the financial conflict of interest for a state guardian of a ward on Medicaid.
And don't forget Professor Peter Singer, who holds an endowed chair in bioethics at Princeton, and believes that legal personhood should be subject to a cognitive test. Those who don't pass are eligible for killing if their families prefer, or for society's greater good. In fact, Arthur Caplan has repeatedly spoken about Terri Schiavo's autonomy, but I am including as an attachment to my testimony an article from the Philadelphia Inquirer in which he supports a presumption of non-treatment in ICU for people in a persistent vegetative or minimally conscious state, and limiting the information and choices provided to patients and families. This is one example of a futility policy permitting the health care provider to make the decision about treatment.
In the face of these developments, the disability rights movement has expertise to bring. But we also have an attitude about disability that diverges from the mainstream, especially the mainstream of bioethics. Frankly, I think that's why we were deliberately excluded from the last decade of policy making conducted off the public radar screen, why the right-wing-left-wing script was so important to these bioethicists, no matter how untrue and exclusionary.
Basically, the bioethicists have warped the palliative care movement into a life-ending movement. They've had hundreds of millions of dollars to work with, and they've used it to build a steamroller that's decimating the civil and constitutional rights of people in guardianship. This affects more than the disability community of today, it affects everyone, directly or through family, sooner or later. There are rules being made for who lives and who dies, but the rule-making and the medical killing are happening behind closed doors. Many things are private family matters, like parental discipline of children, for example, until they go too far. It's time to call "time out," to go back to the table and talk about how to build a health care and legal system that respects us all.
On a more practical level, what can you do to help?
MEANINGFUL FEDERAL REVIEW
Under Medicare and Medicaid law, you could provide for meaningful federal review of contested third party decisions to withhold treatment in the absence of an advance directive or personally appointed surrogate. Uphold a clear and convincing evidence standard with teeth in it. Uphold a presumption for food and fluids.
Ever since the Cruzan decision in 1990, people with disabilities, old and young, have been starved and dehydrated based on surrogate or health provider decisions, but we don't know who, why, how or what factors were involved. We also know that physicians are overruling patient autonomy and denying treatment under futility policies. You could ask for all hospitals to send you their futility policies. Congressional examination of the impact of existing policies is necessary.
STATE-BY-STATE REVIEW OF LAWS AND POLICIES
Funding for a disability-rights-based state-by-state review of guardianship and health care decisions laws is needed, along with comprehensive efforts to develop reforms to safeguard against non-voluntary and involuntary euthanasia.
PUBLIC EDUCATION BY PEOPLE WITH DISABILITIES
There should be funding for public education about the perspectives of people living with significant disabilities on the difference between end-of-life decisions and decisions to end the lives of disabled people who are not otherwise dying.
OLMSTEAD IMPLEMENTATION, PASSAGE OF MICASSA
The civil rights of people with disabilities to long-term supports in the community under the U.S. Supreme Court decision in Olmstead should be implemented. We call for passage of the Medicaid Community Attendant Services and Supports Act, which would allow people receiving Medicaid funding to have a life in the community instead of being forced into a nursing home. This bill also includes consumer-directed options that maximize personal responsibility and reduce costs.
SUSTAIN GOVERNMENT FUNDED HEALTH CARE PROGRAMS
Conservatives who honestly supported efforts to protect the life of Terri Schiavo should work on a bipartisan basis with moderates and liberals to ensure continued appropriate funding of Medicare and Medicaid. Thank you for defeating the latest round of proposed budget cuts that threaten to result in a less-public, but very real, increase in the numbers of deaths of older and disabled people, even more prolonged and agonizing than the one experienced by Terri Schiavo, through lack of access to needed healthcare. I can't help but note that much of the power of the end-of-life movement has come from the fact that Medicare did not cover prescription drugs, including pain relievers. It was pure extortion to require people to agree to forego curative treatment in order to get pain relief, and I've been terribly disturbed to see that the new Medicare prescription drug coverage does not include pain relieving medication, continuing the pattern of extortion that forces people to accept a potentially premature death in order to receive pain relief.
To conclude, regardless of our abilities or disabilities, none of us should feel that we have to die to have dignity, that we have to die to be relieved of pain, or that we should die to stop burdening our families or society. Cognitive abilities must not be allowed to determine personhood under the laws of the United States. Reject the script you have been given by the right to die and the right to life movements. Instead, listen to the disability movement. We are your advance guard, in anticipation of the aging of our society, with decades of experience in living with disability. We want to help build a society that respects and welcomes everyone.
Material accompanying testimony:
Issues Surrounding Terri Schindler-Schiavo Are Disability Rights Issues, Say National Disability Organizations
All Lives Are Equal Under The Law By Steven Eidelman, Executive Director, The Arc of The United States, and Stephen Drake, Research Analyst, Not Dead Yet. From Washington Watch: Volume 3 (2005)
Penn hospital to limit its care in futile cases: Severely brain-damaged patients won't get certain treatments, as a rule. By Stacey Burling (Philadelphia Inquirer, Nov. 4, 2002)