Tuesday, March 06, 2007

EP Position on the Ashley Treatment & other misguided ideals

Exceptional Parent Magazine Position Statement to Organizations
When the Slippery Slope Becomes a Mudslide

This EP Position Statement was prepared by:
Joseph M. Valenzano, Jr., CEO and President Rick Rader, MD, Editor In Chief
Tricia Luker, Editorial Director-Organizational Relationships
Jan Carter Hollingsworth, Managing Editor

In its thirty-six year history, EP magazine has rarely taken a position in areas of controversy or differences of opinion. We prefer, as a matter of journalistic principle, to present objectively all sides to a given argument and debate, adhering to our mission of providing credible information for and on behalf of those involved in the care and development of children and adults with disabilities and special needs. We have, however, taken a rather strong stance on issues such as: extending the benefits of the Orphan Drug Act, condemning a policy that endorses the use of restraints, and supporting the expansion of newborn screening utilizing tandem mass spectrometry (MS/MS). We thought long and hard about taking stands on these issues, and we did what we felt was the right thing.

Now we find ourselves met with yet another great challenge the very essence of human life and dignity and our conscience dictates we do the right thing once again. In January, the story of Ashley and her "treatment" burst out in the national news. Ashley, who is now nine years old and has significant and lifelong disabilities, was given "growth attenuation" surgery and medication when she was six years old to keep her from growing to a full adult size. Her parents, in a decision that they say in their website "was not difficult," found physicians willing to surgically remove Ashley's breast buds, her appendix (even though nothing was wrong with it), and her uterus. She was then treated with high doses of estrogen to stunt her growth. These procedures were performed without either court or ethics committee approval. Indeed, the institutional ethics committee that the family and physicians consulted prior to placing Ashley under the knife, decided to leave the decision in the parents' hands, rather than engaging in the comprehensive, ethical debate the procedure deserved.

As one might expect, the story of the "Ashley Treatment," the name the parents themselves coined for the procedure, generated brief but bitter debate. Things have now quieted down again. Barely three weeks after Ashley's story hit the press, Switzerland's Supreme Court, to virtually no groundswell of public outcry and very little public notice, ruled that it is now permissible in Switzerland to allow assisted suicide for persons with serious mental illness, even if their condition is not otherwise terminal. Switzerland already permitted assisted suicide for people with terminal illnesses at the time this decision was announced. The "Ashley Treatment" and Swiss assisted suicide stories came along about 15 months after a Netherlands facility announced the creation and implementation of the "Groningen Protocol." The Groningen Protocol, named for the pediatric hospital at which it was devised, described a five-step process physicians are encouraged to follow to sanction the euthanizing of infants who are born with serious, potentially life-threatening disabilities. The end step in the Groningen Protocol is that the physicians inject medication to kill the infants, rather than letting the infants pass away as a result of their disease or defect running its course. The Groningen Protocol physicians, at the time of announcing the Protocol, also announced that they had implemented the Protocol to euthanize four infants even before the Protocol was announced. One of those was a child with Down syndrome. Despite the implications of what the Groningen physicians call "a deliberate, life-ending procedure," the story received no substantive coverage in America outside of the medical community.

The deafening silence now accompanying the not-so-subtle threats that people with disabilities face because of procedures like "Ashley's Treatment," mental illness based assisted suicide and infant euthanasia is appalling. Ashley's story emerged three years after the major part of her surgery had been completed. Four infants were euthanized using the "Groningen Protocol" before the public even knew the protocol existed. How and why does this happen? And why does the Ashley story suddenly surface? History has shown us that children with disabilities have been victims of involuntary sterilization, institutionalization, and widespread abuse, neglect, and death. Historically, society had little or no expectations for children with disabilities, and their families frequently felt shame. In the last 50 years, parents and professionals have united to reject these inhuman practices and to insist that our children have the same opportunity for lives of dignity and achievement that we expect for ourselves.

EP magazine has been a leader in fighting to preserve the human dignity of life itself a life we all share, regardless of the existence or degree of disability we might encounter individually. These dramatic news stories do not represent isolated instances of hard choices in hard times. Each story represents a conscious attempt to expand the number of life-ending or life-altering procedures available to physicians and parents who would choose to use them and, in so doing, rob the child of her or his human dignity. The creators of these procedures want them to be adopted and used by physicians and families throughout the world. The utilitarianism they promote in the name of compassion is nothing other than new language and new ideas designed to encourage the systematic denigration of those with disabilities, stripping them of the basic human right to life and dignity. Over sixty years ago, millions died to rid the world of people who perpetrated these same shameful acts in the name of bogus science. Have we now ignored that sacrifice and the lessons they taught us?

It is an outrage that no court or ethics committee engaged in the soul-searching debate a procedure like "Ashley's Treatment" should have generated. It is an outrage that society should countenance extreme surgical procedures and hormone injections as a solution to the challenges of caring for a six year old with complex disabilities. It is a shame and an affront to the human dignity of every one of us to permit these procedures on even one child. We need to make it right and make sure it never happens again. We are heartened that so many organizations within the disability rights movement in America have acted swiftly to condemn "Ashley's Treatment." Their actions are justified on several fronts. But we all must become more zealous in our efforts to expose and condemn all similar affronts to human dignity posed by practices like the Groningen Protocol and the use of assisted suicide to address serious mental illness.
We see "Ashley's Treatment," the "Groningen Protocol," and the Swiss assisted suicide decision as thinly veiled attempts to objectify and desensitize the value of human dignity.

It should never be acceptable in America for a care-providing parent or guardian to authorize and procure "Ashley's Treatment" for a child and have the decision be "not difficult." The difficult action, and the action we at EP choose to take, is to fight for the human dignity we all have the right to possess. Taking that away should not just be difficult; it should be impossible. And it should make us all angry that these efforts to strip human dignity are happening all around us in relative secrecy. We cannot let these stories fade away or our dignity fades away with them. We need to be ever mindful of the words "all that is needed for evil to prosper is for good men to stand by and do nothing."

Please, for our children's sake, their children and generations to come, let us not stand idly by. Let us do something. We urge the following:

* EP calls upon all professional medical, dental, and other health care related organizations, associations, and societies to come forward with a statement denouncing these treatments and sanctioning those who take part in it.
* EP asks private foundations as well as federal and state agencies and departments to consider cutting off all grants to those hospitals or institutions that allow such procedures to take place.
* EP calls upon all of science and medicine to denounce publicly the Groningen Protocol, Ashley Treatment, and the Swiss decision on assisted suicide.
* EP encourages all disability organizations that have not yet issued statements to join with us in this effort. And what will we, EP magazine, do as a publishing and communications company? We will do what we do best, publish and communicate. And what form will this take, specifically?* EP will continue to offer articles in its print publication and on it website that inform and educate parents and professionals about resources and best practices. The operative words are inform and educate. We are not in the business of inciting.

* EP will explore hosting an EPLiveOnLine seminar series <http://www.epliveonline.org/> http://www.epliveonline.org/ which will explore topics such as:

- the history of human rights and medical abuses perpetrated against those with disabilities
- the protocol and principles employed by modern day ethics boards and committees
- a review of the United Nations Universal Declaration of Human Rights

* EP will re-dedicate itself to constantly scanning the disability landscape, nationally and internationally, for murmurs of abuses such as the Ashley Treatment, the Groningen Protocol, and the Swiss assisted suicide issue. When found, EP will bring these issues to the fore, endeavoring to keep them from slipping beneath the public radar screen.
* EP will encourage, through verbal and written communiquis, the primary care physicians, pediatric and adult neurologists, psychiatrists, occupational and physical therapists, developmental disability nurses, physical medicine and rehabilitation specialists and other allied health care professionals with whom we have relationships and contacts to take every opportunity available when they teach and present to mention the "slippery slope" phenomena discussed in this article.
* EP will develop and provide, upon request, a brief PowerPoint presentation that presents modern day issues that are too reminiscent of past abuses and horrors.
* EP pledges to provide comprehensive, written materials and specific informational pieces on how to access relevant community supports and services and how to navigate federal and state special education law. These will also be made available on the EP website.

* In its continuing effort to be open and responsive to its readers' most pressing and prevalent questions and needs, EP will set up a special channel on its website where readers can pose questions on how to access community supports and services.

* EP will give voice to advocates by providing an abbreviated version of this Position Statement on its website and allowing website visitors the opportunity to express their support by signing their names to this statement online.Source: Exceptional Parent Magazine <http://www.eparent.com/newsletter/StatementToOrganizations.htm> http://www.eparent.com/newsletter/StatementToOrganizations.htm________________________________________________________________

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