On Monday, April 20, the Chicago “End of Life” Care Coalition hosted an event titled “Options in ‘End of Life’ Care: The Legal, the Personal and the Controversial.” Eyebrows – and tempers – rose in the disability community when the conference flyer came out. For the past couple of months, the biggest “end of life” story in Chicago has been the coverage of the Final Exit Network (FEN) – a bunch of “special” people who devote their spare time to hooking up with strangers and facilitating their suicides. The “special people” at FEN don’t limit their “assistance” to people who are terminally ill, but are eager to “help” just about anyone with a disability or chronic condition. (Note – to be fair and accurate, I should let readers know that the Coalition doesn’t put scare quotes around “end of life” in its name. That’s my doing and I don’t apologize for it.)

Against that backdrop, this event brings in the president of Compassion & Choices – Barbara Coombs Lee. And yet, in spite of the broad agenda that FEN represents, no one from the disability community was on the panel.

That wasn’t going to go unanswered. A complaint was registered with the event organizers and swiftly dismissed by them. Having tried by polite channels, eight NDY members attended the event on Monday night. Below is an account by Larry Biondi, Advocacy Coordinator for Progress Center for Independent Living. Following his account is the text of the flyer that was passed out that night.

NDY Makes Its Points at CECC Event – By Larry Biondi

Eight members of Not Dead Yet attended “Options in End-of-Life Care: The Legal, Personal and Controversial,” an ‘end-of-life’ panel discussion at Illinois Masonic Hospital in Chicago. The members were Amber Smock, Larry Biondi, Mark Karner, Martha Cooper, Sam Knight, Rachel Siler, Dale Fox and John Barton.

The members handed out flayers to the attendees as they were registering for the event and went into the auditorium. A flyer got into the hands of the lead organizer, Julie Goldstein. From the look of her face, she wasn’t pleased at what she was reading. We all worked hard to contain our disappointment.

Barbara Coombs Lee, President of Compassion and Choices, started the panel discussion. She discussed the range of ‘End of Life’ Care Options from hospice to more controversial options such as voluntarily (or is it coercing?) stopping eating/drinking and suicide and “aid-in-dying.”

She started her discussing by talking about the “Che-che or Death” scenario where five people were shipwrecked off an island. A tribal group captured them and brought them back to land to get tortured. The first person was asked, by the Tribal member, “Do you want Che-che or death?” Not knowing what che-che meant but knowing what death was, the captured opted for the former. He was immediately rushed off to a secluded place; he was tortured, skinned alive, his organs were ripped out of his body [and he died slowly. Knowing what happened to his friend, the next guy who was up to the tribal leader also choose che-che, because he feared death. The last guy wanted death. The tribal leader was shocked. He then said, “Ok, you can have death, but first you must have che-che!”

(I wonder if she tells this story to audiences in Hawaii. I hear that Hawaiians aren’t as quick to laugh at stories with that stereotype “quaint and savage” customs in island native populations.)

Ms. Coombs Lee continued her discussion on how she’s been a nurse for 20 years. How she’s been in the ER, “Inserting tubes in every orifice imaginable.” Of course she advocated for a person’s right to get medical assistance to commit suicide, praising Oregon and Washington State for instituting state physician-assisted suicide laws. She didn’t mention disability in her presentation. No mention of how people with disabilities are seen by the medical field as costly, and therefore it’s a legitimate fear that suicide laws will be designed to kill us.

The second presenter, Joshua Hauser, is a doctor at Northwestern Hospital and Director of EPEC Project. He spoke of palliative care and how other supports, such as consoling with clergy, a team-effort support by doctors and psychological counseling can extend a terminal-ill person’s life. No mention about disability in his presentation, either!

Terry Mason, a doctor serving on the Chicago Department of Public Health, tackled the public policy implications of aid-in-dying. He was noncommittal on the issue but at the end of his discussion encouraged the crowd to garner the same passion they have about PAS to the 105 youths who have been shot and killed in Chicago so far this year. By this time, no mention about disability got really maddening!

Then came the question and answer session. The moderator read the first question on a note card submitted by the audience. Lo and behold, it was a question asked by a NDY member! “Do you think legalizing PAS will put people with disabilities in danger? Dr. Hauser said that people with disabilities shouldn’t worry, obviously unaware or not caring that activists in that movement have been facilitating the suicides of disabled people in his own city.

A highlight of the night was when fellow NDY member Amber Smock loudly interrupted Dr. Hauser answering a question. As soon as the moderator read the question, Amber shouted, “What about statistics showing people with disabilities are the most vulnerable to physician-assisted suicide? Have you done any research about that?” Dr. Hauser responded that he did’t think the disability population is in any danger of being targeted by PAS. He went on to say that doctors at the Rehabilitation Institute of Chicago know how to treat people with disabilities. He didn’t mention, of course, that Final Exit Network “guides” were offering a different kind of treatment to people with disabilities in Chicago.

Speaking of FEN, a question went to Ms. Coombs Lee about her relationship with the organization. Ms. Coombs was vague when she was asked if she supports the Final Exit Network. While she acknowledged that the network was being prosecuted in recent “assisted suicides,” she supports the person’s right to seek PAS if they are competent. Basically, she didn’t answer the question and the moderator from the Chicago End of Life Care Coalition didn’t press her for an answer.

While NDY had a presence, this panel discussion was awful from a disability-rights perspective, due to the willful avoidance of the people on the panel when it came to admitting just how much disability is central to “end of life” discussions.

Here’s the flyer that was handed out to all attendees at the event:

Well, according to board representative Julie Goldstein, the panel is to discuss “aid-in-dying” (the use of this public-relations generated term certainly tells us where Ms. Goldstein falls in terms of her attitude about assisted suicide). She acknowledges that there are concerns about “vulnerable populations” – both with and without disabilities under legalization of assisted suicide.

Barbara Coombs Lee was invited to facilitate a “nuanced” discussion, rather than a “polarized” one, according to Ms. Goldstein.

That’s an interesting claim, since it ignores the simple reality that Ms. Coombs Lee is the representative of a large political pressure group and her job is to put as pretty a face as possible on the political agenda and accomplishments of her organizations. That’s called “spin,” not “nuance.”

Obviously, her job also consists of discrediting, minimizing, and distorting any criticism of legalized assisted suicide or the movement as a whole. It is hard to see this person as anything other than “polarizing” – since it’s implicit in her job description that she be that.

If this is the beginning of a “careful dialogue,” we’d hate to see what a “careless” one looks like.

NOTHING ABOUT US WITHOUT US

Especially with the “freelance” activities of the Final Exit Network prominent in the news, disability has been thrust once again into the forefront of the debate around assisted suicide – and no amount of “spin” or “nuance” will change that reality.

BUT WHAT WOULD WE SAY
AND WHY SHOULD YOU CARE?

(begin page 2)

THE REALITIES OF ASSISTED SUICIDE

The disability experience is that people who are labeled “terminal,” based on a medical prediction that they will die within six months, are — or almost inevitably will become — disabled. Furthermore, virtually all “end-of-life care” issues have been disability rights issues for decades.

In fact, although intractable pain has often been given as the primary reason for enacting assisted suicide laws, the reasons doctors actually report for issuing lethal prescriptions are the patient’s “loss of autonomy” and “feelings of being a burden.” These feelings arise when a person acquires physical impairments that necessitate relying on other people for help in tasks and activities formerly carried out alone.

Increasingly, the reasons doctors actually report for issuing lethal prescriptions are the patient’s “loss of autonomy” (87%), “loss of dignity” (80%), and “feelings of being a burden” (36%). People with disabilities are concerned that these psycho-social factors leading to assisted suicide are being widely accepted as sufficient justification for assisted suicide, with most physicians not even asking for a psychological consultation (5% in 2004, 16% overall) or the intervention of a social worker familiar with home and community based services that might alleviate these feelings. The societal message is “so what?” or “who cares?”

FINAL EXIT NETWORK

In late February, the news broke that a multi-state investigation had resulted in the arrests of four members of the Final Exit Network. These “freelancers” and “worker bees” of the assisted suicide movement claim to have aided the suicides of some 200 individuals – many of them nonterminally ill. Two cases under investigation involve a Georgia man distressed over his appearance after successful cancer surgery; a second case involves a woman with minor physical complaints and a long history of emotional problems.

Ms. Coombs Lee has stated repeatedly that “prosecution” of these cases doesn’t accomplish anything useful. She has also said that the real “blame” for the actions of the Final Exit Network is the failure to pass laws legalizing assisted suicide in states other than Oregon or Washington state.

This is demagoguery at its worst. Last November, the Final Exit Network issued a press release announcing that neither the law in Oregon or Washington state went far enough and that they would “help” people who couldn’t get legal prescriptions in those states.

Finally, the local tie to the Final Exit Network is 26-year-old Kurt Perry. He has announced he wants the Network’s help to commit suicide. Aside from living with the nonterminal condition Charcot-Marie Tooth syndrome, Perry quit school at 16 because he couldn’t get accommodations. He has never been employed.

No doubt this panel will have suggestions for Mr. Perry. Some might have ideas for palliative care. Barbara Coombs Lee might discuss his legal options of self-starvation and dehydration.
No one will discuss the impact of being undereducated and unemployed and how it can affect Perry and others like him. As you might guess, disability advocates would have a lot to say about these issues – how exclusion and rejection are all too often experiences that come with disability. More important, disability advocates could offers suggestions and approaches to giving real support to Mr. Perry and people in similar situations – because we are already doing it with others.

Maybe that’s what Julie Goldstein meant about having a “careful” dialogue – a dialogue that carefully stays clear of some topics and keeps a sharp focus on the individual as a collection of medical symptoms.

(end of flyer)

Our heartfelt thanks and appreciation go out to Larry Biondi and the other seven activists who made sure that Chicago’s “end of life” community got the message that some of us are NOT DEAD YET. –Stephen Drake