Connecticut: Affidavit of James D. McGaughey in Motion to Intervene in Assisted Suicide Suit

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Last week, this blog shared the news that the Connecticut Office of Protection and Advocacy for Persons with Disabilities (OPA) has filed a motion to intervene in the Connecticut assisted suicide case, Blick v. Division of Criminal Justice.  The motion included several affidavits submitted with the motion to intervene.  Today and tomorrow, I’ll share the affidavits of James D. McGaughey, Executive Director of the Connecticut OPA and Nancy B. Alisberg, the Managing Attorney of the Connecticut OPA.

I’ll lead off today with the affidavit submitted by James D. McGaughey.  The text below is a retyped copy of the affidavit, but you can access a scanned pdf copy of the affidavit here.  Text of affidavit follows:

GARY BLICK, M.D., and
RONALD N. LEVINE, M.D.

V.

OFFICE OF THE DIVISION OF CRIMINAL JUSTICE, et al.

SUPERIOR COURT

JUDICIAL DISTRICT  OF HARTFORD
AT HARTFORD

APRIL 8, 2010

AFFIDAVIT OF JAMES D. MCGAUGHEY

1.    My name is James D. McGaughey.  I am over the age of 18 and I understand the obligations of an oath.
2.    I am employed as the Executive Director of the Office of Protection and Advocacy for Persons with Disabilities.  I have served in that position since November 1, 1994.  Prior to becoming Executive Director, I was employed at the Office of Protection and Advocacy for Persons with Disabilities for 12 years, serving in various other capacities including Acting Assistant Director, Advocacy Program Director, Staff Attorney, Human Services Advocate, and Law Student Intern.
3.    During my service at the Office of Protection and Advocacy for Persons with Disabilities, the agency has represented individuals with significant disabilities who faced the prospect of, or actually experienced discriminatory denial of beneficial, life-sustaining medical treatment.  In most such cases physicians or others involved in treatment decisions did not understand or appreciate the prospects of people with disabilities to live good quality lives, and their decisions and recommendations sometimes reflected confusion concerning the distinction between terminal illness and disability.  In a number of those cases, despite the fact that the individuals with disabilities were not dying, decisions had been made to institute Do Not Resuscitate orders, to withhold or withdraw nutrition and hydration, to withhold or withdraw medication or to not pursue various beneficial medical procedures.  In my experience, people with significant disabilities are at risk of having presumptions about the quality of their lives influence the way medical providers, including physicians, respond to them.
4.    Over the past twenty years I have participated with disability and elder advocates, state agency representatives, healthcare professionals, legislators, the Probate Court Administrator and staff from the Connecticut General Assembly’s Law Revision Commission on several committees that studied and drafted proposed amendments to state statutes governing the powers of substitute decision makers and end of life decisions making.  In addition, on January 22, 2010, in partnership with the Connecticut Council on Developmental Disabilities and the A.J. Pappanikou Center for Excellence in Developmental Disabilities, my agency co-sponsored an informational conference on “Disability and Medical Decision Making; Ethical Issues in Policy and Practice.”
5.    Through my involvement in our office’s casework, and in researching and preparing for my policy advocacy roles, it has become apparent to me that people with significant disabilities are uniquely at risk of having the quality and value of their lives underestimated, that they are often perceived as “suffering” and that circumstances under which they may have to live in order to receive care sometimes leave them feeling despondent and hopeless.  In fact, I have met a number of people with disabilities who have told me that at various points in their lives they had “just wanted to die” before coming to realize that they could lead satisfying and contributing lives.
6.    In my role as Executive Director of the Office of Protection and Advocacy for Persons with Disabilities I have become aware of widespread opposition amongst disability advocacy groups to legalizing assisted suicide.  More specifically, I am aware that a number of well respected disability rights advocacy organizations, including the National Council on Disability, the American Association of People with Disabilities (AAPD), the National Council on Independent Living (NCIL), the National Spinal Cord Injury Association, the World Institute on Disability, Justice For All, TASH (formerly called The Association of the Severely Handicapped), the Disability Rights Education and Defense Fund (DREDF), and grass roots groups such as ADAPT and Not Dead Yet, have all adopted positions opposing legalization of physician assisted suicide.
7.    Opposition to physician assisted suicide amongst these disability advocacy organizations is rooted in the realities of the disability experience.  It is not uncommon for newly disabled people to experience a period of depression, or even for people who have lived with significant disabilities to become despondent over loss of function, support and important relationships.  While adjustment reactions of this sort are certainly understandable, for people with significant disabilities they are often compounded and prolonged by a general scarcity of accessible, relevant supports that would enable them to live with autonomy and independence.  Faced with the prospect of indefinite confinement in an institution, and with no visible alternatives to offer hope, understandable adjustment reactions often transform into a sense of permanent hopelessness, and, sometimes, a desire to die.  This reality is reflected in a number of “right to die” cases that were brought in different states several decades ago where individuals with significant disabilities asked facilities to stop feeding them, or to have life support equipment disconnected.
8.    In my capacity as Executive Director of the Office of Protection and Advocacy for Persons with Disabilities I am very concerned that if physician assisted suicide is legalized, the practice of prescribing lethal doses will not be limited so as to exclude people with significant disabilities who are despondent or depressed.  Disability advocacy groups know, and my personal experience confirms that amongst health care providers, the distinction between disability and “terminal disease” is often more a matter of perception than objective diagnosis.  For example, the various manifestations of muscular dystrophy, multiple sclerosis, or any number of other chronic conditions may be considered by some to be progressive disabilities, while others see them as “terminal diseases.”  Some people are born with disabilities that that involve multiple, complex medical issues or genetic syndromes that can, but do not always, result in shortened life expectancies.  Other people with physical disabilities may experience repeated, life-threatening infections or various other serious health issues.  Some even depend on life-support technologies, such as respirators or dialysis, or receive nutrition and hydration through feeding tubes and central line catheters.  It is not clear at what point these people would be considered “terminally ill” or how much such decisions would be influenced by pervasive stereotypes about “quality of life” and frank ignorance about the possibilities of living a good life with a disability.
9.    My concerns in this regard are heightened by the literature I have reviewed regarding the unreliability of medical prognostications concerning timeframes in which death will occur for individuals who are considered to be terminally ill.
10.    Based on my experience advocating on behalf of individuals with significant disabilities, I have concluded that categorically exempting physicians from criminal liability if they prescribe lethal doses of drugs will increase the risk of doctor assisted suicide amongst people with disabilities who may have years of life ahead of them.  I further believe that de-criminalizing physician assisted suicide will foster perceptions that living with a significant disability involves suffering and inherently poor quality of life, and that removing the current legal proscription will serve to legitimize the view that life with a significant disability is not worth living.  This, in turn, will impact perceptions of the general public about disability, and will likely influence individuals with disabilities who are struggling with adjustment issues, who cannot readily access options for independent lifestyles, and who are concerned about burdening family members with cost and care.

If readers didn’t take notice of the statements in item 3, please reread the comments.  They touch on the battles that OPA has had to fight in preventing the wrongful deaths of people with nonterminal disabilities – fighting against guardians/conservators and medical professionals.  Tomorrow, I’ll share another affidavit, that goes into detail about some of those cases.  –Stephen Drake

Connecticut: Disability Rights Advocates Move to Intervene in Assisted Suicide Case

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This just in from the Connecticut Office of Protection & Advocacy:

 
Hartford – The Office of Protection and Advocacy for Persons with Disabilities (OPA) filed a motion in Superior Court today to intervene in a recently filed lawsuit about assisted suicide.  The underlying suit, Blick v. Division of Criminal Justice, was initiated by two physicians who are represented by local counsel and by lawyers from Compassion and Choices, a successor organization to the Hemlock Society.  The two doctors seek a ruling protecting them from prosecution for prescribing lethal doses of drugs to patients whom they judge to be terminally ill and who ask for the drugs in order to commit suicide.  OPA is joined in the motion by two well known Connecticut advocates, Catherine D. Ludlum of Manchester, and Claude Holcomb of Hartford.
 
The advocates are asking to intervene in order to ensure that the disability perspective is represented in the case.  In its brief, OPA describes widespread opposition to physician assisted suicide amongst national disability groups – opposition that is based in two realities deeply rooted in the disability experience: 1) the very human feelings of despondency and hopelessness that can sometimes overwhelm a person who is adjusting to loss or who grows discouraged by an inability to find the supports needed to live autonomously outside of an institutional environment; and, 2) presumptions and unconscious prejudice on the part of some health care professionals, including physicians, about quality of life and distinctions between disability and “incurable disease”. 
 
The brief cites a number of cases where OPA has had to take action to defend the lives of individuals with disabilities because physicians had agreed to withhold or withdraw medical supports, even though those individuals were not dying.  In supporting affidavits, Ludlum and Holcomb also refer to experiences they have had interacting with health care professionals where their identities and personal histories were fundamentally misunderstood, they were perceived to be “suffering”, and medical decisions were based on erroneous assumptions about the quality of their lives.  Both have been active in efforts to oppose legalization of assisted suicide.
 
“Legalizing physician-assisted suicide could easily prove to have deadly consequences for people with disabilities,” said James D. McGaughey, OPA’s Executive Director.  He added: “This case also has profound implications for public policy.  Experience in Europe and elsewhere demonstrates that if this practice is decriminalized, societal investment in options for genuinely compassionate end-of-life care slows down, and attempts to regulate its scope fail to prevent abuses.  We have to worry too, that with all the current emphasis on controlling health care costs, physician assisted suicide could become an expectation for anyone perceived as a ‘burden’.”
 
********

The Office of Protection and Advocacy for Persons with Disabilities is an independent state agency charged with defending the civil rights of people with disabilities.  Part of a nation-wide network of legally based disability advocacy organizations, OPA operates pursuant to both state and federal mandates. 

Fifth Anniversary of Terri Schiavo’s Death – A History Lesson

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I’ve probably revisited the struggle over the life of Terri Schiavo in a backwards fashion. I – like other disability rights advocates and activists – have a good memory and were deeply involved in the efforts to stop the removal of Terri Schiavo’s feeding tube.

What that means is that our memory of the struggle is far different than the majority of the public, who mostly believe that the Congressional bill passed hastily by Congress was something the Republicans “pushed down people’s throats.” For varying reasons, political interest groups at both end of the spectrum prefer that the public misremembers events that way.

Below is a C-Span broadcast from March 19, 2005. It features Senators Tom Harkin, Rick Santorum, and Mel Martinez – all of whom played key roles in writing the bill that granted review in federal court of Terri Schiavo’s case. Harkin, a long-time ally of the disability rights community, explained his role in the passage of the bill and how that in rare cases a federal review might be necessary. All of the Senators express hope that a broader bill can be worked out in the future to apply to a broader group of individuals. All express gratitude for bipartisan cooperation on the Congressional bill.

I am lousy at doing transcribing – so I apologize for the lack of a transcript. Please note especially Harkin’s defense of the efforts.

For most people, this will probably be the first time they’ve heard the remarks – since virtually every major news organization – radio, cable, network and print – ignored this press conference and the bipartisan nature of the agreement that allowed passage of “Terri’s bill.” Video below:

That bipartisan moment didn’t last long. It actually started to unravel several days before this press conference. Senator Martinez inadvertently passed a memo to Senator Harkin that listed a list of “Republican talking points” that involved ways the Schiavo case could be used to attack Democrats.  The memo was written by an aide to Senator Martinez, who professed ignorance over its contents at the time.

After Terri Schiavo died, several leaders of Conservative interest groups started using the unsuccessful court challenge as a political rallying cry:

As the vigil in Florida ended for Ms. Schiavo, who was severely brain-damaged, conservatives said the refusal of the federal courts to step in underscored the need for Senate Republicans to end the ability of the Democratic minority to filibuster President Bush’s judicial nominees.

Dr. James C. Dobson, the founder of the evangelical group Focus on the Family, said the judges who would not stop the removal of Ms. Schiavo’s feeding tube were ”guilty not only of judicial malfeasance — but of the cold-blooded, cold-hearted extermination of an innocent human life.”

Tony Perkins, the president of the Family Research Council, said: ”It is a tragic, unfortunate but avoidable event that should awaken Americans to the problem of the courts. It is no longer theoretical. It is life or death.”

Right-Wing interest groups and leaders weren’t the only ones looking to further polarize the public – and revise history – in the name of political gamesmanship.

In mid-April 2005, DNC Chair Howard Dean announced that Democrats would make the Schiavo case an election issue:

Dean, who has called congressional intervention in the Schiavo case “political grandstanding,” singled out House Majority Leader Tom DeLay (R-Texas) for his leading role in the matter.

“This is going to be an issue in 2006, and it’s going to be an issue in 2008,” Dean told about 200 people at a gay rights group’s breakfast in West Hollywood, “because we’re going to have an ad with a picture of Tom DeLay saying, ‘Do you want this guy to decide whether you die or not? Or is that going to be up to your loved ones?’ “

Dean, a practicing physician until he became governor of Vermont in 1991, added: “The issue is: Are we going to live in a theocracy where the highest powers tell us what to do? Or are we going to be allowed to consult our own high powers when we make very difficult decisions?”

Before Schiavo’s death, the Republican-controlled Congress passed legislation giving her parents the right to take action in federal court to have her feeding tube reinserted, but no judge intervened. Schiavo’s husband had fought for years to withdraw the tube, arguing that she would not have wanted her life extended.

Although Democrats voted for the measure, Dean said it provided an opportunity to showcase what he called Republican intrusiveness in the lives of Americans.

This is far from a complete list of those who promoted a revisionist history of the Schiavo strruggle for their own political ends, but it’s pretty representative.

On the right and the left, both bet on the same revision of history – that the battle over Terri Schiavo was a chapter in the “culture wars.”  In the end, it would seem that Howard Dean won the “bet” over who would be best served by that revision. 

The real losers, of course, are people under guardianship or a conservatorship.  The atmosephere at present is poisonous in terms of revisiting what kind of protections people whose decisionmaking is in the hands of others might need.

My 2003 Op-Ed on Terri Schiavo and Disability Concerns

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NDY was involved with the fight to prevent Terri Schiavo’s death for several years.  In 2003, I submitted an op-ed to the LA Times that was accepted and published.  It must have struck some kind of chord, because it ended up appearing in over 20 newspapers – in and out of the USA.

The LA Times has a free archive of its material, but it’s really cluttered with ads – ads which no doubt help to pay for the free archive.  As the author of the essay in question, I have reproduced it in full below, with a link to the article itself at the LA Times archive:

(Note – I did not get a say in the title.  Blame the editors of the LA Times, not me.)

 Disabled Are Fearful: Who Will Be Next?

Commentary
October 29, 2003 |Stephen Drake, Stephen Drake is the research analyst of Not Dead Yet, a national disability rights group.

Bob and Mary Schindler consistently refer to their daughter, Terri, as a disabled person. They’re right.

Although most newspapers are covering this story as an “end of life” or “right to life” issue, what ultimately happens to Terri Schiavo will affect countless other people with disabilities in this country.

Like many disabled people, Terri Schiavo is unable to tell us what future she prefers. She left nothing saying she preferred starvation to living with a disability. She never signed a legal document designating her husband as her surrogate in the event she became unable to communicate.

Despite this, media commentary is dominated by bioethicists and “end of life” experts telling us she should be left to die and explaining how “peaceful” starvation is as a way to die. To hear them tell it, Schiavo has no meaningful life. She can’t talk, they say, she can’t eat on her own, can’t walk and has no control over her bowels or bladder.

Thousands of people with disabilities across the United States are watching the case anxiously. In fact, 12 national disability groups have filed “friend of the court” briefs in opposition to the efforts to starve Schiavo. Obviously, we want to know how all those commenting in this case feel about the lives of people with Down’s syndrome, autism, Alzheimer’s and other disabilities. Are they next for death through starvation? It’s not so farfetched.

I was born brain-damaged as a result of a forceps delivery. The doctor told my parents I would be a “vegetable” for the rest of my life — the same word now being used for Schiavo — and that the best thing would be for nature to take its course. They refused. Although I had a lot of health problems, surgeries and pain as a child, I went on to lead a happy life.

Up until the mid-1980s, U.S. pediatrics journals routinely published reports on the selection criteria used to determine which disabled infants born in hospitals would be left to die.

One of the most notorious incidents involved a team at Oklahoma Children’s Hospital in the late 1970s that used a “quality of life” formula for children born with spina bifida that factored in the parents’ economic and educational level. Poor and uneducated parents and those on public assistance were more frequently advised to not treat their children. Twenty-four babies with spina bifida died, mostly from untreated infections. Not one person on the medical team was charged with a crime.

About 20 years ago, a hospital staff in Indiana was starving an infant with Down’s syndrome. A whistle-blower alerted authorities, and the district attorney went to court to order hydration. The judge refused. Public comment supported the idea that “difficult” decisions like starving disabled infants were best left to the privacy of doctor-parent consultation.

In spite of that, enough of the public was sufficiently outraged to create a stir that cut across the political spectrum in Washington. As a result, congressional legislation was drafted to prevent medical killings of disabled infants.

The legislation, which ultimately was passed, was decried by bioethicists, physicians and others as an attack on both the medical profession and the privacy of family decisions. As a result of the passage of the law, though, more of us avoided getting killed in hospital nurseries through denial of treatment.

Guardianship — which in this case was granted to Schiavo’s husband by the courts — has to have limits, especially when the stakes are the very lives of the people under guardians’ power. It’s important to remember that guardians have power over people, not property, and those people still have rights.

Terri Schiavo, Family Guy, Family Research Council – and a Reality Check

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I really didn’t want to write this kind of post, but with some of the building noise related to Terri Schiavo, it’s become pretty clear that silence isn’t an option. Wednesday, March 31st is the fifth anniversary of Terri Schiavo’s death. I already had something planned for the blog that was bound to make some people unhappy, but very different than this post. (That other post will be published on this blog – on Wednesday at the latest.)

Last week, the show “Family Guy” opened with a short piece titled “Terri Schiavo – the musical.” Sorry – no link. It was offensive and inaccurate.

Of course it was. No shocker there. I decided years ago that I didn’t want to watch the show. For me, the real problem was that – out of four shows that I watched – two of them contained “gags” revolving around the humorous side of adults having sex with kids (or attempting to).  I don’t see the humor in those kind of “gags.” 

There are people I know who like the show and have told me I should watch it because there is material on the show I would find funny.  Based on my limited experience with the show, it’s kind of like telling me I should go grope around in an unflushed toilet because someone dropped something really good to eat down there and I’d enjoy it.

Predictably, the Schindler family reacted.  I guess I don’t blame them.  But in a press release they included this:

The Foundation is calling on all disability rights organizations and pro-life organizations to join us in admonishing the producers and writers of The Family Guy.

To my knowledge, no disability rights organization, including NDY, has chosen to join them.

This hasn’t gone unnoticed by June Maxam at North Country Gazette.  In her article “Where Are They Now?” Maxam lists the national disability groups that were involved in fighting the removal of Terri Schiavo’s feeding tube.  She then suggests that the “silence” from the disability community on “Family Guy” is “condoning and advancing the prejudice, bigotry and hatred of the disabled.”

The fact is, we’re busy with real crises – and the “Family Guy” skit doesn’t come close to being a “crisis.”  NDY is directly involved with coalitions opposing assisted suicide and euthanasia in 4 states, active in a major “futile care” case in one other, involved with a developing court challenge over guardianship limits in another state, providing technical assistance to disability advocates on state legislation, and monitoring the media for grossly inaccurate reporting on the Final Exit Network and individual homicides of people with disabilities.  On top of that, we are working with other national disability groups on other disability rights issues through a national network of advocacy organizations that are run by people with disabilities.  The majority of our work isn’t that visible -we’re seeking change, not headlines.

On the state level, every disability advocacy group is fighting looming draconian cuts to life-sustaining services – cuts which, if implemented, will result in early and unpleasant deaths for many people with disabilities through an indirect, backdoor euthanasia via neglect and abandonment.

Which one of these things do the Schindlers and June Maxam want us to put aside while we go support the Schindlers in their outrage over this show?  It’s not like this is the worst thing the show has ever done – I think the bits I saw that turned me away were on an even lower level than the crappy piece on Terri Schiavo.  If a show that features gags around sexual innuendo and kids remains on the air and has no trouble finding or keeping sponsors, outrage over this skit won’t scare them away.

Speaking of disability advocacy, tomorrow the Family Research Council is hosting a panel on Terri Schiavo’s death.  Bobby Schindler is on the program, which describes him as follows:

Robert Schindler, brother of Terri; full-time pro-life and disability rights advocate

I’m sure the Family Research Council loves the conflation of disability rights and “pro-life.”  That’s one thing they have in common with prominent “lefty” bioethicists.  No one in the actual disability rights community appreciates it, though.  And we don’t appreciate the description of Bobby Schindler as a disability rights advocate.

During the fight to prevent the removal of Terri Schiavo’s feeding tube, the Schindlers showed little understanding of disability rights – or of the potential importance of the involvement of national disability rights organizations in the debate.  Surrounded by their prominent prolife supporters, they almost never mentioned the disability rights organizations supporting the struggle to save her life.  If they’d made a habit of mentioning that, it would have been harder for news organizations – Fox, MSNBC, CNN, the networks, etc. to pretend this was all just one more battle in the “culture wars.”  Unfortunately, framing the fight in terms of the culture wars suited “handlers” like Father Frank Pavone and Randall Terry just fine.

I wish I could say that I have any evidence that the Schindlers have any better understanding of the disability rights community and disability rights issues today than they did back then.  I don’t.  They are not involved in any of the battles mentioned above – and play almost exclusively to Christian Conservative audiences.

I don’t blame the Schindlers for whatever decisions they made back then – they were desperate, exhausted, grasping at whatever straw presented itself.  They lost a daughter and a sister in a long, drawn-out nightmare.

But it’s a little hard to swallow the claim that Bobby Schindler is a disability rights advocate.  When the Schindlers ride into town, the “culture wars” ride in with them.

And at the Family Research Council panel tomorrow, the topic will be the “culture wars,” not disability rights, since there is no one from our community sitting on that panel.  –Stephen Drake