Last Thursday, January 16th, “Huffington Post Live” featured a 30 minute discussion of assisted suicide, euthanasia, and the right to die – specifically how these issues play out in the USA.

The program was hosted by Josh Zepps, an Australian with who has a  self-admitted libertarian bent (a great definition of libertarians someone shared with me was “holding the firm belief in the absolute right of both rich and poor alike to sleep under bridges).

Pat LaMarche appeared on the “pro” side – she wrote a blog last April about a man with ALS whose last wish was that he could legally get direct assistance – euthanasia – instead of having to self-administer a lethal dose on his own.

Fran Schindler – a “regional care coordinator” for the Final Exit Network (FEN) also appeared for the “pro” side.

Tim Rosales appeared as a spokesperson for the Californians Against Assisted Suicide.

John Kelly, Director of “Second Thoughts,” also appeared on the “anti” side, presenting the perspective of disability activists opposed to assisted suicide and euthanasia.

Points/claims made by Pat LaMarche:

• People with ALS die by “choking” to death  if they don’t find a way to die earlier in the process;
• Assisted suicide isn’t enough, people are “forced” to take their own lives earlier than they’d like and would live longer if someone could do it for them;
• Used the words “horrible” and “agony” to describe deaths that people are “forced” to have (some form of “agony” was used 5 times by her).
• Made the statement “I honor the disabled person and I honor that they may want to go on… (yeah – I’m pretty sure I heard that stress on the “may.”) Feel free to groan – I did.

Fran Schindler – seemed to be on a short leash.  Most of what she said came directly from a written document, obviously meant to make sure she didn’t use her own words.  When she did stray off script, I could appreciate the cause for concern on the part of FEN – she referred to John Kelly as “the gentleman in the wheelchair” and then went on a rant about Lawrence Egbert and exit bags in response to something John Kelly said – probably very hard for viewers to make sense of.

Tim Rosales – Tim listed the types of organizations and groups opposed to assisted suicide and also started to critique the “safeguards” in legislation.  He also gave a detailed account of the many pressures – financial, family, societal – that can come to bear in a health care system like ours, negating real “choice” – which seemed to reach the host in a way that John Kelly’s mention of the same points didn’t.  Tim also corrected the host in labeling minority opposition to social conservatism, saying they also distrust the government in the current atmosphere.  (Actually, like people with disabilities, many minority members distrust the medical profession itself due to mistreatment or discrimination in trying to get health care.)

John Kelly – Said that pain isn’t a common reason give for wanting to commit suicide – “being a burden” come much higher on the list.  Also, John made the case that legalization – contrary to “libertarian” assertions – increases state involvement by creating a state program to sanction suicide, which sounds OK in some “fairy tale world,” but not in the one he lives in which involves discrimination and pressures toward feeling a burden and a distrust of professionals shared by many people with disabilities.

Just for those who like to do some fact-checking, here are a couple of helpful links:

This link is to a pdf version of the 2012 Oregon “Death With Dignity” report, which includes a summary of data collected from 1998-2011 as well as data (such as they are) for the current year.  You’ll find that a low percentage giving “pain” as a reason for wanting lethal medication is low – almost certainly lower than the actual percentage since “fear of inadequate pain treatment” is lumped together with “inadequate pain treatment.”

The article “Reasons for Living with ALS” is from the ALS  Society.  Here is an excerpt dealing with LaMarche’s false claim that death in ALS comes by “choking to death.”:

Choking
I can remember how frightened my daughters and I were that Tom would die choking, like a drowning man, and we would have to stand by helplessly,” recounts Pat Snyder, R.N. who lost her husband to ALS in 1997. “Our doctor told me that this would not happen and Tom would die peacefully – and he did. His breathing became slower and shallower and he went to sleep. In several hours he died peacefully. He was able to spend his entire illness at home with his family and we were comforted that he did not suffer.”

Some people with ALS fear they will die choking and gasping for air. This fear can create panic for both patients and their families. The reality is that most people with ALS die very peacefully and for those who do have trouble breathing or experience choking, there are things that can be done to reduce or eliminate these problems. Having the patient and family prepared to create an atmosphere of comfort and dignity at the time of death can assure a death without pain or anxiety. By discussing concerns in advance with their physician and nurse, patients and caregivers can be prepared with medications, nasal ventilation, oxygen and suction in the unlikely event that these interventions are needed to assure the patient is comfortable as death draws closer.

While the re-use of “exit bags” by FEN’s ex-medical director Larry Egbert came up, it’s also important to know that the recent PBS documentary (linked on the Huffpo Live page) shows a previously unknown videotape of FEN’s Ted Goodwin explaining how he holds people’s hands down to keep them from “inadvertently” tearing the exit bag off – the person he explained it to was an undercover Georgia Bureau of Investigation agent.  Check out this NDY post for a discussion and a link to the specific segment with Goodwin’s videotape.

Finally, please check out the embedded video below to watch the archived discussion from Huffington Post Live: