Our News & Commentary Blog

I thought it would be helpful to start off this entry with a little personal background information.  As I’ve mentioned before, my disabilities are pretty certainly a result of brain injury at birth, accompanied by the development of hydrocephalus.  I was in what they refer to as the “first generation” of shunt recipients for the condition (a shunt is a tube inserted through the brain into the ventricles with the other end draining into the chest or abdomen).

Many of us share similar cognitive strengths and weaknesses.  Short version is language areas good, spatial areas not so good.  Nevertheless, once you’ve been identified with a pathology, there’s a tendency for some professionals to view some behaviors that might be seen as precocious in most children as dysfunctional in children already identified as ‘damaged.’

For example, when a precocious child uses vocabulary advanced for their age, he or she might not have full comprehension of the full meaning of the word he or she is using.  When we see a precocious kid, we cut him or her slack for learning such words at all, and don’t wonder that their life experiences haven’t caught up so that full comprehension of their meaning is there.

Well, a lot of us kids with hydrocephalus turned out to be early talkers, and pretty good at amassing a large vocabulary unusual for our age.  Professionals came up with a term to describe what they saw – ‘Cocktail Party Speech’ which is succinctly defined in this course material for a Speech/Language class:

Many hydrocephalic children have been characterized as hyperverbal with “cocktail party speech.” Cocktail party speech is an example of well developed form (well-developed articulation, intonation, and stress patterns) that is used for social interactions but has weak conceptual meaning.

It’s that second sentence that I think is relevant to the term I want to discuss.  The phenomenon here

Minnesota: Dakota Grand Jury Convening This Week to Consider Charges Against Members of Final Exit Network

assisted suicide, courts, final exit network, grand jury, Jerry Dincin, lawrence egbert, Minnesota, reality check

Right now, this latest story involving the Final Exit Network (FEN) is getting only local coverage, but it could become a national story, depending on the outcome.

From the story, by reporter Laura Adelmann:

Apple Valley woman may have killed herself using information from Final Exit Network

In a March 26 letter to a defense attorney, Dakota County Attorney James Backstrom’s office stated it will convene a grand jury May 9-11 seeking an indictment to prosecute right-to-die advocates for their role in an Apple Valley woman’s May 30, 2007 suicide.


Doreen Nan (Gunderson) Dunn, then 57, suffered years of intense chronic pain and depression when she killed herself using a hood and helium gas, according to Robert Rivas, attorney for the Final Exit Network, a national nonprofit organization accused of assisting suicides and named in the investigation.

Before taking her life, Dunn had paid a $50 membership fee to Final Exit Network, according to a March 20 search warrant issued by the Georgia Bureau of Investigation detailing evidence forwarded to the Dakota County Attorney’s Office and obtained by Sun Thisweek.

The warrant cites phone records, documents, airline tickets and car rental contracts as evidence Dunn had contact with some Final Exit members months before taking her life and on the day she died.

Final Exit members named in the investigation are Thomas “Ted” Goodwin, former president of Final Exit Network; Roberta Massey, a Final Exit “case coordinator;” Jerry Dincin, then-Final Exit Network president; and Dr. Lawrence Egbert, Final Exit medical director who Newsweek dubbed “The New Doctor Death.”

Charges the grand jury will be asked to consider are aiding suicide, conspiracy to commit the crime of aiding suicide and interference with a dead body, according to the search warrant.

Those names should look familiar.  Goodwin and Egbert were both involved in the suicide of John Celmer, a man in Georgia who committed suicide after successful cancer treatment left him distressed about his appearance after surgery.  Massey and Egbert were defendants in the case involving Jana Van Voorhis, a woman with no serious physical problems but who had a long history of emotional and psychological issues.

The reporter is pretty careful in most cases in this story to qualify statements about FEN practices with wording such as “the website states.”

That’s important because not all of what the FEN website claims is true. Take this, for example, from the latest article:

A Final Exit Medical Committee reviews information, and if approved, an “Exit Guide” is assigned who provides detailed information how a person may purchase equipment and take steps to end their own life, according to the website.

“The Network never supplies equipment,” the website states.

That right there – about FEN never supplying equipment.  It’s not true.  How do we know?  The overly-modest and zealous Dr. Larry Egbert told us so, in an interview that appeared in the Washington Post in January:

Egbert tells me that years ago he asked someone who was about to “exit” if he could reuse the hood to save future patients the cost of buying a new one. The patient was delighted with the idea, Egbert says. He started asking everyone.

The hood in my bare hands feels slightly slick. So, this one, the one I’m holding, has been used to end someone’s life? I ask. Egbert tells me it has surely been used at least once, and maybe several times, and the same could be said for most of the other 17 hoods in the garbage bag. 

So, Egbert, by his own admission, has provided equipment on a regular basis in his work as an ‘exit guide.’  That might seem like a minor point to some in and of itself, but the fact is, there is no way for us – the public – to verify any claim FEN makes.  It’s only when someone like Egbert gets to talking and bragging we get to hear some facts that depart from the established script.

We don’t know who else has supplied equipment to ‘clients.’  We don’t know how many FEN members ‘pushed’ so-called ‘clients’ with second thoughts to get on with it, not wanting their valuable times wasted.  We don’t know how if any of the FEN members have held down the hands of a person trying desperately to tear the bag off.

We don’t know.  And even Robert Rivas (FEN atty.) and Jerry Dincin cannot swear that they know the parameters of what has gone on in each and every so-called ‘peaceful exit.’  They weren’t there and they don’t know.  When they try to tell us that everyone is behaving responsibly, remind them that Egbert already revealed one lie about their practices and we’re not inclined to believe any other unverified claims they make.  –Stephen Drake

If my family had listened to the doctors . . .

Slideshow

I wouldn’t be able to tell you my story:

Never take ‘no’ for an answer

by Terrie Lincoln

If my family had listened to the doctors 12 years ago, I wouldn’t be able to tell you my story.

My name is Terrie Lincoln and I am a 31 year old quadriplegic. I live in Rochester, New York and work as a Systems Advocate at the Regional Center for Independent Living. I have a degree in social services and a bachelor’s degree in public administration. I am currently working on my master’s in social work.

At the age of 19, I had an automobile accident. They had to use the Jaws of Life to free me from the wreck and rush me to the hospital. After I got there, my family and friends learned I severed my spine and broke my neck. At that moment I had no idea what was wrong with me, since I was in shock and slipping in and out of a coma.

I was air-lifted to a nearby hospital in West Virginia a few hours later. The doctors then told my parents they were going to do emergency surgery on my neck — a neck fusion. They had to put a plate in my neck. The doctors also told my parents while I was being prepped that there was no way I could survive a broken neck. They said nobody lives with a broken neck. My Mom said: “We’ll see about that.”

The surgery turned out well and I started recuperating. While I was lying in the hospital bed that did not rotate because they did not want to injure me more, the doctors would come in and ask my mom if she was ready to pull the plug on me. “Why would I want to do that?” she would ask? The doctors answered, “What kind of life will she have— she won’t. She won’t be able to dance, walk, work, have a social life, or be independent.”

Read Terrie’s full story.

Pennsylvania: Another Reporter Takes a Deeper Look at Elderly Homicide-Suicides

media coverage, mercy killing, Our News & Commentary Blog, Pennsylvania, research, suicide-homicide

Last September, this blog discussed an article from a Pennsylvania newspaper that took a thoughtful, in-depth look at the tragically growing trend of elderly homicide/suicides.  When that story was written, there had been three such cases in the state since June of that year.

The number is now up to at least 6 in the last year.  Terrie Morgan-Besecker takes another in-depth look at elderly homicide/suicides and interviews a number of people about the larger picture (including me) to get beyond the ‘mercy killing’ theme that dominates the coverage of these tragedies.

An excerpt that includes a bit from my interview is below.  From The Abington Journal, here is a sample of ‘Loved to Death‘:

But researchers who have studied murder-suicides among the elderly say they’re troubled by society’s tendency to view such deaths as mercy killings.

“One of the concerns is you don’t want to make it sound like it’s a viable thing to do,” said Sonia Salari, a professor in the Department of Family and Consumer Studies at the University of Utah. “If we romanticize it, it makes it sound like it’s OK.”

Statistics regarding the number of elderly murder-suicides committed each year are difficult to come by, as no agency specifically tracks that category of deaths, Salari said.

In a 2005 study, Salari analyzed 225 intimate partner murder-suicides involving couples where either the victim or perpetrator was at least age 60. She gathered the data from news reports, police reports and obituaries published from 1999 to 2005.

The research showed that in 55 percent of the cases, health issues – involving either the victim or perpetrator – were cited as a contributing factor. Approximately 7.5 percent of the victims had some sort of dementia.
Compassion or murder?

Salari said that, while she sympathizes with survivors who view the deaths as an act of compassion, society cannot lose sight of the fact that a person’s life was taken, often without their consent.

“Some people don’t consider it domestic violence, but we need to see it as that,” she said. “You have two deaths … Most of the time the victim is not in on the plan.”

Stephen Drake, a spokesman for Not Dead Yet, a nonprofit group that opposes assisted suicide laws, also expressed concern over how murder-suicides among the elderly are viewed.

“These are acts usually of desperation, not compassion,” he said. “These are people who are feeling depressed or overwhelmed. It’s often a consequence of an emotional crisis.”

Please read the rest of the article here.  –Stephen Drake

‘Second Thoughts’ Director John Kelly in Boston Globe Article on Assisted Suicide Referendum

advocacy, assisted suicide, boston globe, disability activists, john kelly, Massachusetts, media bias, media coverage, Our News & Commentary Blog, referendum, Second Thoughts

Yesterday’s (April 29) edition of the Boston Globe featured a long article about some of the issues and players central to November elections in Massachusetts when voters will decide whether or not to legalize assisted suicide in their state.

The good news is that John Kelly, director of Second Thoughts – people with disabilities opposed to legalization of assisted suicide – is one of the people featured in the article.  The bad news is that, in line with the general pro-assisted suicide slant of the article, he’s given little actual space in the article in which to articulate the disability rights community’s opposition to legalization of assisted suicide.  Below is a great picture the ran of John, followed by his comments in the article:

Opposition extends well beyond the church pews, though, with some self-described liberals, doctors, and specialists in end-of-life care mobilizing against it. A number of them object on moral grounds, believing suicide is wrong and doctors should never abet it; others fear that the sick will be misdiagnosed and end their lives prematurely. “Assisted suicide sounds good in a world where we have perfect knowledge,” says John Kelly, a longtime disability rights advocate in the state who’s helping organize opposition. “It’s impossible to forecast accurately how long someone has to live.”

The reporter – Scott Helman – didn’t even mention that John is the director of an organization that opposes legalization, which to most readers will translates as meaning John Kelly is only representing himself in this article and in this issue.

Similarly, the longest passages given over to individuals are to proponents of assisted suicides – and perhaps more importantly – their stories.  Stories tend to stick with readers longer than policy analysis – on either side of this debate.

Also, and most harmful to disability activists in this political fight, when Helman invokes Kevorkian’s name he omits mentioning that most of Kevorkian’s body count consisted of non-terminally ill women with chronic conditions and disabilities.  That piece of information makes the insistence of disability activists that we be part of this debate a lot more comprehensible to the general public.

I’m hoping John can write sometime this week with some reactions and reflections on this experience and how to better fight this uphill battle in the media – the same uphill battle we’ve all been fighting on a national level for over 15 years.  –Stephen Drake

To read the whole article, you can access either this link or this one.