‘Uncontrollable freight train’ | Persons with disabilities speak out against DE assisted suicide bill

[WDEL coverage of press conference by disability advocates held Jan. 18 in Delaware:]

‘This uncontrollable freight train’ | Persons with disabilities speak out against Delaware assisted suicide bill

DJ McAneny Published Jan 18, 2022

While HB140, a bill looking to legalize assisted suicide for certain individuals in Delaware, is set to be discussed in the House Health and Human Development Committee Wednesday, local and national groups representing individuals with disabilities held a virtual press conference Tuesday to discuss why they’re not interested in the “help” they see as inequitable legislation.

“You’ve got groups of people who are sectioned off,” said Matt Valliere, Executive Director for the Patients Rights Action Fund. “Physicians can help these people die, but not those people, and that group becomes larger and larger, but the fact of the matter is, for public policy that makes suicide a medical treatment for a subset of people, always, it’s a subset of people with disabilities. That’s where the the public policy becomes the defining moment in that group.”

Many speaking out against the bill ahead of the committee hearing said the creation of a pathway to inexpensive assisted suicide for persons facing terminal diagnoses or life-altering disabilities doesn’t take into account that the cost of such services versus the cost of healthcare can create an unnecessary and unfair viewpoint that, in order to “ease the burden” one might hypothetically create in such a situation, it might be reinforcing the idea that suicide would be the correct or right choice.

“We need to support people where they are, not give them the option of dying, but give them the option of living. Give them the option of support. Help them to live their best lives,” said Terri Hancharick, chairperson for the State Council for Persons with Disabilities. “I’m just very surprised at the timing of this. Instead of institutionalizing death for the disability community, Delaware legislators should focus on ensuring that everyone has the care and resources that they need. We have to continue to advocate for reliable, competent care in the community. We have to include to advocate for full inclusion of people with disabilities.”

There’s a concern that creating cheap alternatives to life-extending care can feed into a growing culture of suicide acceptance, where suicide ideation can overtake the desire to live a full, worthwhile life, even when the latter is possible. Several speakers referred to it as a “contagion.”

“It just doesn’t make any sense to have that law in place, because it’s too easy. It leads to suicide contagion when such laws take the stigma off of having assistance, or even doing it yourself,” said Daniese McMullin Powell, an ADAPT Delaware organizer. “It makes it more common. And it makes other people that aren’t even terminal have the idea that it’s okay to go ahead with that, and that it’s just a societal thing, and there’s ‘nothing wrong with it.'”

Stephanie Packer, a mother of four from California, said her terminal diagnosis led to her insurance recommending to her lethal drugs to perform assisted suicide would be much cheaper than life-saving treatments. While they eventually agreed to cover her treatment, she echoed McMullin Powell’s concerns that governments shouldn’t be setting such black-and-white legislation when that’s not how businesses like health insurance work, and are instead focused on financial savings.

“It’s this uncontrollable freight train that’s about to slam into a wall…There’s no way to stop this once it starts, unless we do it now. And that’s part of the urgency,” Packer said. “That suicide contagion just grows and grows and grows…Right now, we are at such a high risk of being completely transformed into a culture of death, a culture that accepts death as just something that we can be flippant about. And it devalues all of us. Of course, I’m speaking specifically about patients who are chronically or terminally ill, but realistically, it devalues every single life and we are worth so much more than what these bills give us and show us.”

The public can attend the House Health and Human Development Committee meeting on Wednesday, January 19, 2022, to listen in on discussion or provide their own comment on the issue by registering at this link.

[Written testimony may be submitted through Jan. 20.]

And more coverage, quoting Daniese McMullin-Powell:

Opponents of Delaware HB 140: ‘Relieving symptoms doesn’t mean you have to die to relieve them’

“HB 140 has a lot of ‘whereases’ such as ‘Whereas the integration of medical aid in dying into the standard of end-of-life care has improved the quality of services by providing an additional palliative care option to terminally ill individuals,’” said Daniese McMullin Powell, Delaware disability rights activist.

“Really? There is nothing to prevent insurance denials for life-saving or improving health care,” she said. “There is no improvement. Palliative care is to relieve symptoms. Relieving symptoms doesn’t mean you have to die to relieve them. There are plenty of other options to take care of pain.”

McMullin Powell joined other people who have lined up to block the aid-in-dying bill being presented for at least the fourth time in the last five years in the Delaware legislature.

… “There’s no oversight. No investigation if anything seems questionable,” McMullin Powell said. “There is a greater risk to elderly and disability. Too often, the right to die becomes the duty to die.”

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