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CHALLENGING INCOMPETENCE
THE MEANING OF SELF-DETERMINATION

Thomas Nerney

THE LOSS OR ABSENCE OF SELF-DETERMINATION OR AUTONOMY, DEPENDING ON THE SIGNIFICANCE OF A PERSON'S DISABILITY, THEN BEGINS TO LIMIT THE OBLIGATIONS OF SOCIETY TO PROVIDE NECESSARY LONG TERM SUPPORTS AND MEDICAL TREATMENT.

How did the field of bioethics, medicine and law reach what appears to be a general consensus that individuals with significant disabilities are not equally entitled to society's resources? Contemporary outrage over the appointment in 1999 of the Australian ethicist, Peter Singer, to an endowed chair at Princeton University, is simply the latest case in point. Singer has argued that young children, babies surely, are not fully human and therefore not entitled to the same protections as "real" humans. Significantly disabled infants, Singer argues, are "non persons" and frequently do not reach the moral status of certain animals. Many advocates are alarmed by his appointment. Singer's views on the lack of humanity for newborns with disabilities can be examined as far back as 1979 when he published his text Practical Ethics and in 1984 when he wrote a "guest editorial" for Pediatrics, the Journal of the American Academy of Pediatrics. In that editorial he compared significantly disabled children unfavorably with pigs and dogs. (Singer, 1984). When Singer came to this country after experiencing massive protests in Europe against his views, The New York Review of Books accorded him a forum, what amounted to an apologia for euthanasia. Singer titled this long essay "On Being Silenced in Germany" and compared himself to victims of Nazi oppression. (Singer, 1991) The question remains. From Pediatrics to The New York Review of Books. Just how far out of the mainstream is Peter Singer?

The attack on the value, the very humanity of persons with disabilities, the perceived lack of quality in their lives, their lack of humanness even, and, finally, their "prohibitive" cost to society, is recorded in the peer reviewed medical and ethical literature since the 1970s. The first important article in the peer reviewed medical literature began with physicians describing why they would not or did not treat certain infants based on "quality of life" considerations. Drs. Duff and Campbell were among the first and among the first to utilize the services of three of the most prestigious medical journals in the country: Pediatrics, the Journal of the American academy of Pediatrics, JAMA, the Journal of the American Medical Association and The New England Journal of Medicine. (Duff & Campbell, 1973) There are several milestones in this literature that highlight this downward spiral.

University of Kansas Professor, Rutherford Turnbull, chronicled this literature through 1988 for the US Civil Rights Commission. (Medical Discrimination Against Children with Disabilities, 1989). The citations from the literature and the testimony of doctors and ethicists number in the hundreds. It was during the period of the 1980s that the discussion moved from subjective "quality of life" arguments in favor of denying treatment to individuals with disabilities to social and cost related arguments.

In the aftermath of the celebrated Indiana "baby doe" case of 1983, where an infant with Down syndrome was "allowed" to starve to death, Dr. Walter Owens, the physician in attendance during the death of this child, testified:
In an ideal society, one might say we should consider only the welfare of the child, but this is not an ideal world and we do not have unlimited resources Money which is spent and we're talking of many times $100,000 or $500,000 or even one million dollars spent on these children that is money that is not available for the education of normal children. (Walter Owens, M. D., 1986)

The experiment on children born with spina bifida at Oklahoma Children's Memorial Hospital was the most infamous. (Gross, Cox, Tatyrek, Pollay, and Barnes, 1983) Here, Dr. Gross and his colleagues reported that during the years 1977 to 1981, 33 infants born with spina bifida were selected for "non treatment". Of those for whom no objection was made, all died. The medical staff who conducted this "study" used a formula based on the potential financial contribution of family and society to the care of these children. Not unexpectedly, the children selected for death were poor. When Pulitzer Prize winning reporter, Carlton Sherwood, did a three part series for CNN in 1985 there was a brief public outcry. Carlton Sherwood had captured on camera a young black baby with a bubble on his back the size of a basketball. His mother, who was a single parent and on welfare, was counseled to give up her son. He was the latest child selected for non-treatment. The hospital and doctors resisted the entreaties of a nurse who begged for the operation needed and even offered to adopt the child. The National Right to Life Committee and the American Civil Liberties Union actually joined together in an action to sue the doctors and the hospital. It failed and this coalition predictably fell apart. The lead doctor in this macabre demonstration soon left for a position on the faculty of the Harvard Medical school and the nurse who exposed the behavior of the doctors to CNN was dismissed and prevented from working as a nurse again.

On the heels of this publication came the recommendation of prestigious group of doctors associated with the Brown University Medical School. (Walker, Feldman, Vohr & Oh, 1984) Several doctors at the Brown University Medical School published an article in Pediatrics the following year that purportedly did a cost benefit analysis of low birth weight infants-247 infants who weighed between 500 grams and 999 grams at birth. Of all those followed for one to five years, most, 74%, were unimpaired or minimally impaired and 10% moderately impaired. What conclusion did they draw? Since they had determined that 16% would or did have "severe handicaps" none of the children in this birth weight category should be treated! Why? Their costs were too much for society to bear. Perfectly healthy children should be sacrificed so that society may relieve itself of the cost for a small minority.

Professor Turnbull in his research for the Civil Rights Commission came to the conclusion that lurking in the background of this kind of conduct was the spoken and unspoken bias against intellectual disability. The relevance of the cases and the literature surrounding disability issues at birth go right to the heart of the social prejudice against individuals with disabilities. Parents are almost always asked to act in the best interest of their children and are seen as their natural guardians. This is almost always positive. However, when the information provided to them is erroneous or biased, they may be led to decision making that more often than not conforms to this prejudice.

It was in April 1988 that Richard John Neuhaus, then Director of The Rockford Institute Center on Religion and Society, wrote about the return of eugenics:

Thousands of medical ethicists and bioethicists, as they are called, professionally guide the unthinkable on its passage through the debatable, on its way to becoming the justifiable until it is finally established as the unexceptional. Those who pause too long to ponder troubling questions along the way are likely to be told that "the profession has already passed that point." In truth, the profession is usually huffing and puffing to catch up with what is already being done without its moral blessing. (Neuhaus, 1988)

Buchanan and Brock's widely used text, Deciding for Others, the Ethics of Surrogate Decision Making, is now representative of generally accepted ethical and legal theory. (Buchanan and Brock, 1992). In this book the authors carve out two exceptional classes of individuals with disabilities: the "permanently unconscious" and the "severely and permanently demented". Neither class rates "personhood". In the first case society has "minimal interests" in providing care and treatment and in the second case "truncated interests" in doing so. The authors state:

Nevertheless, especially in the case of incompetent patients who are both unable to express their own wishes about care and whose debilitation limits the benefits they can receive from care (emphasis added) there is potential for the cost of care to loom large in decision making.

After serious examination of the issue of whether there is any general right to treatment (usually limited to medical treatment) for anyone, competent or not, the authors conclude that there is not. Patient self-determination is meant to create solely a right to refuse treatment and never a right to demand it. They continue then with their analysis:

Thus, when the incapacities that result in incompetence also reduce the benefits an incompetent patient can obtain from a given treatment, care may not be warranted that would be provided to competent patients as a matter of entitlement of individual right.

The authors go on to say that "the severely demented are even worse off than animals such as dogs and horses". Shades of Peter Singer.

In the 1990s when we were early on articulating the meaning and the implications of self-determination we came upon Sean. Sean was in a terrible auto accident and was wasting away first in a rehabilitation hospital and then a nursing home in a neighboring state. We administered the Medicaid waiver for acquired brain injury but simply did not have enough dollars to bring Sean home to his own community. Sean needed total care and was in a coma still after five years. The doctors called it a "persistent vegetative state". His mom and dad wanted him back because they recognized that the professionals had given up on their son.

We sat down with Sean's parents and simply said that we would put all of the money at our disposal under their control if we could figure out a way to bring Sean home. They immediately went out and secured a house, interviewed his high school friends for assistance and set up a network of individuals committed to Sean and whatever "recovery" might mean for him. Today a national brain injury group is making a movie of Sean's and his family and friends efforts. Sean and his mom and dad travel around the country giving presentations on self-determination. Sean is making eye contact and initial verbalizations.

Sean's dad one day articulated the danger he felt for his son. He simply said "How long will this society think my son important enough to continue this level of support?"

Once individuals get reduced to a status where personal autonomy or self-determination is not "possible", they may lose their moral claim on our resources. Contemporary ethicists like the authors above make this claim on the principle of distributive justice. Distributive justice underlies our progressive tax system, e.g., and simply calls for sharing resources in ways that approximate fairness. Distributive justice has been the cornerstone upon which we argued for resources for the most vulnerable. Contemporary ethical theory has now turned this principle on its head. Because we live in times of scarce resources, especially medical and long term care resources, those who can "benefit" the least (read those with significant disabilities) may end up having the lowest moral claim on these resources.

During the 1990s the discussion has intensified. Readers may remember the story of Sandra Jensen, the California woman with Down syndrome who needed a heart transplant. It was no mystery why she never made it onto a list of individuals for whom a heart transplant might become available. Only a large and public national outcry by her friends finally made it possible for her to receive the heart transplant.

During the last decade of this century Richard John Neuhaus's words have become prophetic. Chronic disability, and, especially "incompetence" associated with disability, has now created a duty to die. The Hastings Center Report regularly brings us new and disturbing articles advancing an agenda largely created by the new utilitarian ethics. Even the more thoughtful individuals associated with the Hastings Center, such as Daniel Callahan, its Director, have modified their views on important ethical issues surrounding individuals with disabilities in the last 15 years. In 1983 Callahan wrote forcefully against the idea of ever withdrawing food and water. He said " The feeding of the hungry, whether because they are poor or because they are physically unable to feed themselves, is the most fundamental of all human relationships. It is the perfect symbol of the fact that human life is inescapably social and communal." (Callahan, 1983) Less than four years after publication Callahan changed his mind. He then published his book "Setting Limits: Medical Goals in an aging Society". (Callahan, 1988) In this book he seeks to set out some principles that will help us establish limits on providing care based on a new social expectation that there is a "natural life span". In his review of the book, the American philosopher, Sidney Hook, takes Callahan to task for not going far enough. (Hook, 1988) Callahan's most recent contribution to a discussion of these issues has been to coin the term "the biologically tenuous" in order to assist us in discussing the rationing of medical and long term care for individuals who have reached the age of 85.

Rationing itself is still a topic that receives little attention. Irene Wielawski, a journalist who writes on health care issues, calls it "One of the most troubling and least talked-about-issues in health care: the rationing of medical care not by need but by the wealth of the patient." (Wielawski, 1999) The pressures to limit care are familiar in the context of the current managed care debate. The "ethical" community would seem an unlikely ally.

Arthur Caplan, who writes extensively on ethical questions, is one of the few to challenge the issue of the actual cost associated with caring for individuals at the end of life. The common wisdom is to associate the burgeoning costs of Medicare to the high cost associated with end of life care. He says "Sadly, the movement to encourage the use of living wills has as much to do with hopes for cost containment as it does with self-determination." (Caplan, 1993) While Caplan seems not to understand the communal role in self-determination, he did have the temerity to report on the data from the Health Care Financing Administration for Medicare expenditures from 1976 through 1988. Those in their last year of life accounted for 28.2 percent of Medicare expenditures in 1978 and in 1988 the number was 28.6 percent. Ironically, the older the patient got the smaller the cost to the Medicare program.

In 1997 John Hardwig wrote "Given our society's reluctance to permit physicians, let alone family members, to perform aid-in-dying, I believe I may well have a duty to end my life when I can see mental incapacity on the horizon." He went on to say:

Many people were outraged when Richard Lamm (former Governor of Colorado) claimed that old people had a duty to die. Modern medicine and an individualistic culture have seduced many to feel that they have a right to health care and a right to live, despite the burdens and costs to our families and society. But in fact there are circumstances when we have a duty to die. As modern medicine continues to save more of us from acute illnesses, it also delivers more of us over to chronic illnesses, allowing us to survive far longer than we can take care of ourselves. It may be that our technological sophistication coupled with a commitment to our loved ones generates a fairly widespread duty to die. (Hardwig, 1997)

Dr. Bob Edwards, the renowned embryologist who was part of the team that helped produce the first baby born using in vitro fertilization spoke at the annual meeting of the European Society of Human Reproduction and Embryology in France of this year. According to the July 4, 1999, Times of London, he said that "Soon it will be a sin for parents to have a child that carries the heavy burden of genetic disease. We are entering a world where we have to consider the quality of our children."

A duty to die and a duty not to be born. We have indeed entered a brave new world.

In the field of law, medicine and ethics the issue has been essentially settled. Those with significant disabilities, especially those with significant cognitive disabilities, have lost a substantial claim on our resources within this elite community. Peter Singer and Jack Kevorkian are simply the popular and media savvy proponents of a theory that is becoming all too acceptable.
What may be necessary is to examine current notions of incompetence, significant disability and distributive justice. The notion of autonomy alone as a foundation for self-determination, if it ever held any promise, has failed the test of equality, equal citizenship and community. Amid conflicting data, the call for withdrawal of resources has reached a critical juncture.

To be sure, many parents seize upon guardianship as a way to protect their sons and daughters from the very dangers outlined above. In some states, unless you are a guardian you cannot obtain vital information and records needed to advocate for a person with a disability. However, the other side of the guardianship coin remains clear: thousands of individuals with disabilities across the country live with do not resuscitate orders; thousands more are confined to institutions. Most under the direction of a court appointed guardian or corporate guardian. This is illustrated in aspects of the current Connecticut institutional case, Messier Vs State of CT. In dispute is not only the issue of a corporate guardian prerogative to institutionalize an individual with a disability but the role of guardians in imposing do not resuscitate orders both at the institution and at nursing homes. A judicial finding of incompetence can result in real protection for some and death or banishment for others. We need to reassess our traditional commitment to guardianship and begin the arduous task of collecting more data on the dimensions of this problem.

Equality as a Foundation for Self-Determination

The notion of informed consent was at the heart of the American Revolution. In our founding documents a theory of equality was enunciated that grounded equal rights as the centerpiece of a political philosophy, albeit one that has taken over two hundred years to become applicable to all Americans. The last groups surely are those who are routinely stripped of their citizenship in the name of providing help or, as it turns out, in the name of denying necessary medical and long term supports. It is unclear how depriving individuals of constitutional protections can be truly helpful in the long term and in the face of this onslaught from the newly energized bioethics community, an attack no different in substance than the one mounted by the eugenics movement in the early decades of this century.

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