Changing the words, re-framing the issue:
Readers of both the print and web versions of Ragged Edge are probably aware that Not Dead Yet, along with some other voices, have been expressing concern over some of the advocacy of the "end of life" movement. Specifically, we've charged that certain aspects of disability health care policy are being re-framed as "end of life care" policy. In doing so, we say, groups such as Partnership for Caring and Last Acts have encroached on disability policy, but in re-naming it as something else, have been able to bar our place at the policy-discussion table.
But when did this re-naming, this re-framing, begin?
Consider the following:
Those concerned with the well-being of individuals with mental retardation need to critically evaluate, or reevaluate, the meaning of the hospice movement. A careful examination of the hospice movement reveals the following. First, justifications for the hospice program are similar to those offered for non-treatment or active euthanasia of the individuals with mental retardation. Generally, these justifications are based on "quality of life" and economic cost considerations. Second, hospices may become the basis upon which a national death establishment is to be constructed. Third, the rejection of medicine's obligation to preserve life which is contained in the hospice literature and the tendency in the hospice movement to broaden the categories of people eligible for "care" suggest the possibility that hospice programs might be used for people with mental retardation who are denied medical treatment."
The passage above is from the article "Hospice and the New Devaluation of Human Life," by Donald Gibson. It was published in the journal Mental Retardation in 1984 --19 years ago.
At least some of what Gibson was warning us about has already come to pass, and the rest is clearly on the horizon.
Gibson wasn't even the first within the community of professionals in the field of mental retardation to raise a warning call. That honor probably goes to Wolf Wolfensberger. In 1976, he gave a plenary address at the annual convention of the American Association on Mental Retardation. In that address, he touched on a number of "deathmaking" trends he saw in American culture - and the growing sentiment to "euthananize" people with mental retardation was one of them.
Writing about it in 1989, Wolfensberger said that "the message was almost totally rejected or ignored. At any time after the presentation or during the next year, there were less than a dozen people who came up to me and acknowledged or mentioned what I had said, either in belief or disbelief. Had I spoken on the topic of macramé therapy for elderly retarded people in nursing homes, I would probably have been swamped with contacts immediately after my talk, during the rest of the convention, and for years thereafter."
By the time Gibson had written his article, Wolfensberger's remarks had already been forgotten or dismissed. Lou Heifitz, in an article responding to both Wolfensberger and another author in the same journal, even came up with a name for it: Wolfensberger and others could suffer the same fate as Cassandra in Greek mythology, he said.
Cassandra was given the gift of prophecy by the god Apollo. However, Cassandra wasn't interested in being the infatuation du jour of this particular god and spurned his advances, gift or no. Not being able to take back his gift, Apollo simply turned it into a curse: Cassandra's prophecies would still be accurate, but no one would believe them.
But you don't really need a god to facilitate this reaction when you're predicting a future that no one wants to believe will happen.
On June 11, the National Hospice and Palliative Care Organization issued a press release titled New Study Released By NHPCO Reveals Medicaid Hospice Benefit Saves $282 Million A Year Nationwide. "A new study released by Milliman USA, Inc. and commissioned by the National Hospice and Palliative Care Organization reveals that hospice care services provided to Medicaid beneficiaries coping with life-limiting illness result in significant cost savings to states. The new report, Value of Hospice Benefit to Medicaid Programs, maintains that hospice care annually saves Medicaid approximately $282 million nationwide or approximately $7,000 per hospice-eligible beneficiary."
As Gibson predicted, hospice is being marketed as a cost-saver.
But there's something else significant here: note that the press release refers to "life-limiting" illness rather than "terminal" illness.
Partnership for Caring director Karen Kaplan used that same term in her reply to NDY and other national disability groups on July 15. It's no coincidence. J. Donald Schumacher, the president and CEO of NHPCO, also plays a major role in Partnership for Caring. Schumacher is the Vice Chair of the board of directors of PFC and is also listed as the Director of National Policy for PFC.
The term is an effort by the groups to expand the definition of those on whose "behalf" they work to change public policy. And that group clearly includes, in their minds, people with disabilities -- people like Michael J Fox, who has Parkinson's, a progressive disabling condition that is not generally described as "terminal" - and Fox himself doesn't seem inclined to describe himself that way either.
Organizations such as the Hemlock Society do something similar in using "hopelessly" or "incurably" ill interchangeably with "terminally" ill.
Not only are groups like Kaplan's working to expand the public's perception of those who are "dying" by changing the term from "terminal" to "life-limiting." They are using other means as well in an effort to re-frame the public debate.
Shortly after the Supreme Court in California rendered its decision in August 2001 saying that people with cognitive disabilities could not have life-sustaining treatment removed absent "clear and convincing" evidence of their own wishes (the case of Robert Wendland), Last Acts decided to frame and define the Wendland case in its own way -- for a much bigger audience than the one reading California Supreme Court decisions. In October 2001, the Last Acts Writers Project hosted a workshop for Hollywood writers. The workshop was meant to give writers story ideas and expert accounts of how "end of life" stories should be framed. A transcript of the workshop shows that the Wendland case was one of the stories pitched at the workshop. Vicki Michel was Last Act's Wendland "expert" -- she was an author of one of the many briefs arguing for Robert Wendland's death. As would be expected, her account of the case departed significantly from the facts marshalled by those of us fighting to save him and other people with cognitive disabilities.(and her brief had made simplistic and incomplete reference to the arguments used by disability groups in our brief).
Did Last Act's workhop bear fruit? In the March 8, 2002 episode of the television drama series "First Monday," the justices grapple with a case eerily like that of Robert Wendland. Charles Durning plays one of the justices -- a wheelchair user, who at first holds views about withholding food and water very similar to that of Not Dead Yet. But by the episode's end, he has a change of heart, and rules with the other justices to pull the plug. It's impossible to know if the screenplay for the "First Monday" episode was written before or after the workshop, but it's certainly a handy coincidence that the fictional court arrived at a decision that would have pleased the Last Acts workshop's trainers
Despite the Calif. Supreme Court decision, the issues that drove the Wendland case are still very much alive: disability rights activists are currently embroiled in negotiations with the California Coalition for Compassionate Care over a legislative proposal to make it easier to withdraw and withhold treatment from people with cognitive disabilities. The initial positions taken by the respective groups are, not surprisingly, pretty far apart.
At the time Gibson wrote his article, there was relatively little money going into the hospice or "end of life" movement. That's changed. Big time.
There are a large number of philanthropy groups pouring money into the "end of life" movement. The Robert Wood Johnson Foundation alone has invested $148 million "to improve care at the end of life," according to the group's own figures. It's almost certain that the total, when money from other philanthropic organizations (the Project on Death in America, for example) are added in, that a minimum of a quarter billion dollars has been spent by foundations since 1996 to promote end-of-life programs -- and the shaping of public policy and opinion.
When I was born, I experienced head trauma from the forceps used to deliver me. In a line of dialogue familiar to those who remember the Baby Doe cases and the Oklahoma "experiment," the doctor who delivered me suggested that my death was the best outcome to hope for. If my parents had followed where the doctor was no doubt leading, instead of stubbornly insisting they wanted everything possible done for me, I'd be dead.
And in the way the term gets used today, they would have made an "end-of-life" decision.
Being optimistic is a struggle for me. I tend to think the past is the best predictor of the future. And I am more fully aware now than I was a year ago that NDY is just the latest in a series of "Cassandras" that have raised a cry of concern over the years.
But things are different this time. NDY hasn't depended on one or two articles to promote outrage and action. We've organized. And, for the very first time, an incredible group of disability organizations and leaders has joined us and voiced a protest that couldn't be ignored.
Maybe, finally, Apollo's curse on the descendants of Cassandra will be broken.
PFC's long history
The Partnership for Caring website has a section under "About Us" labeled "Choice in Dying - honoring a legacy."
Without getting too specific about it, this is PFC's way of acknowledging they are merely the latest incarnation of an organization that has gone through many changes -- in name, and -- to be fair -- in mission. But perhaps I'm being too generous in saying the mission's changed, because you wouldn't know it from reading their first paragaph:
"For 62 years the leaders and members of Choice In Dying and its predecessor organizations worked to achieve 'a good death' for all. They changed attitudes. They helped to kindle the growing movement among professionals to improve end-of-life care. They achieved the legal assurance of the right to refuse treatment. Because of their efforts these legislative and court battles have been won."
That's odd, because the first incarnation of this ever-changing entity was the Euthanasia Society of America. Right up through the 1960s, its founders and leaders included a Who's Who of advocates of legalized extermination of children and adults with labels of mental retardation. These included founding members such as Charles Francis Potter, Inez Philbrick, Ann Mitchell and Foster Kennedy. It also included such leaders as Wyllistine Goodsell, Eleanor Dwight Jones, Horace Kallen and Joseph Fletcher. Fletcher was the original champion of the concept of "personhood" -- and asserting it was ethical to kill humans who did not meet criteria for being a "person."
Foster Kennedy might be more familiar to readers of Ragged Edge. Kennedy was the author of an article published in a 1942 issue of the American Journal of Psychiatry. Here is a representative quote from his article, titled "The problem of social control of the congenital defective: Education, sterilization, euthanasia":
I believe when the defective child shall have reached the age of five years - and on the application of his guardians - that the case should be considered under law by a competent medical board; then it should be reviewed twice more at four-month intervals; then, if the board, acting, I repeat, on the applications of the guardians of the child, and after three examinations of a defective who has reached the age of five or more, should decide that that defective has no future or hope of one; then I believe it is a merciful and kindly thing to relieve that defective - often tortured and convulsed, grotesque and absurd, useless and foolish, and entirely undesirable -- of the agony of living. (American Journal of Psychiatry, 99, 13-16 (1942))
The steps leading from the Euthanasia Society of America to its current incarnation as Partnership for Caring can be read in Ian Dowbiggin's book A Merciful End, about the euthanasia movement in modern America. Dowbiggin's book was published earlier this year by Oxford University Press.
Dowbiggin, a professor of history at Canada's University of Prince Edward Island, is much better at his analysis of events going back 30-70 years than he is dealing with more recent events. The book gives no mention of Not Dead Yet, or of some of the more current efforts of the "right to die" movement to move their agenda beyond those of people who are in the final stages of a terminal illness.
As for PFC...
George Santayana said "those who cannot remember the past are condemned to repeat it."
He didn't say anything about whitewashing or sugarcoating the past and what it might mean. Let's hope it doesn't mean that we are condemned to repeat PFC's past. We don't need any more Foster Kennedys, Charles Potters or Joseph Fletchers. We have enough to deal with already.
Stephen Drake is Research Analyst for Not Dead Yet. He can be reached at firstname.lastname@example.org
Posted July 21, 2003
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