Anita Cameron: Physician Assisted Suicide Removes Choice

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Often, the first charge of proponents of physician assisted suicide (PAS) to those of us who are against it is “you are taking away my choice to die when I want to by fighting against assisted suicide legislation”.

Try as I may, I simply cannot understand that view. How am I taking away their choice? Aren’t there choices of when and how to die without physician assisted suicide? Does assisted suicide offer real choice to its proponents?

Currently, and contrary to popular misconception, suicide is not illegal in the United States. If someone is sick and in great pain, they can choose to end their life in a number of ways, including stopping treatment, stopping nutrition and water, or taking an overdose of pain pills that are already available. For a terminally ill person, hospice stands ready to make the first two approaches painless and peaceful.

The “choice”, loosely speaking, that proponents are talking about is to be able to ask their doctor for life-ending medications and if their own doctor says no, the ability to doctor shop until they find a doctor who will agree to their request.

Unfortunately, physician assisted suicide offers no actual choices. PAS removes choice by opening the way for insurance companies to deny payment for lifesaving or life-extending treatments and medications, but state that they are willing to pay for the suicide cocktail or drug instead. This has already happened in Oregon and California. Insurance companies are concerned about their bottom line; chemotherapy and other life-saving or extending drugs and treatments cost thousands, sometimes hundreds of thousands of dollars, while the cost of suicide drugs is much cheaper and co-pays are sometimes as low as $1.20. With Congress set on doing away with the Affordable Care Act (ACA) and replacing it with the American Health Care Act (AHCA), insurance companies will be even more emboldened to take away people’s choice in health care.

If proponents took the time to think beyond their personal experiences as typically more privileged members of society, they would also see that what they view as choice is actually giving a doctor permission to devalue the lives of people with disabilities and communities of color, two groups who get notoriously inferior health care from the medical profession.

As someone whose mother was erroneously determined to be terminally ill and whose father was denied essential treatments and surgeries because doctors determined that he had “no quality of life” due to his disability, I am sympathetic to people wanting to have the choice to take matters into their own hands when that time comes for them. The thing is, that choice is already available. Physician assisted suicide is not that choice. There is no good in such legislation, only harm.

Marilyn Golden’s Testimony Against Alaska Assisted Suicide Bill H 54

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[Editor’s note: As most of our readers know, NDY works closely with the Disability Rights Education & Defense Fund in opposing assisted suicide legislation. A Committee hearing was held last week – April 6 – in Alaska, which allows witnesses to testify by teleconference. Below is Marilyn Golden’s clearly articulated and compelling testimony. BTW, she has also developed one of the best organized, most thorough and accessible compilations of resources on the issue that I’m aware of.]

I am Marilyn Golden, Senior Policy Analyst with the Disability Rights Education & Defense Fund—speaking in opposition.

Introduction to social justice basis for opposition

The proponents of H 54 it under the banner of choice.

But choice is a myth in the context of our unjust health care reality. End-of-life treatment options are already limited for thousands of people—constrained by poverty, disability discrimination, or other obstacles. Adding this so-called “choice” into our dysfunctional healthcare system will push people into cheaper lethal options.

H 54 protects doctors and hospitals, not patients. It presumes that all families are happy, and that everyone is financially secure and has no one who wants to harm them.

The bill assumes a fantasy world where government will effectively address abuse, under a bill with no provision for doing so.

Elder and disability abuse

H 54 is a recipe for elder abuse (& disability abuse). An heir (someone who stands to inherit from the ill person) or an abusive caregiver can steer someone towards it, witness their request, pick up their lethal dose for them, and even, in the end, give the drug—because no objective witness is required at the death, so who would know?

The Oregon model is rife with problems

The Oregon model, on which this bill is based, is rife with problems. There is evidence that, in Oregon and in Washington State under virtually identical legislation to this bill:

  • Doctor-shopping has gotten around all safeguards
  • People with acute depression got access to lethal drugs
  • People have lost their lives due solely or partially to economic pressure and even criminal abuse.
  • Deaths have occurred by means other that the patient ingesting the deadly drugs themselves, with no legal consequences, notwithstanding what’s required.
  • Medical complications from the lethal drugs used, have added to any miseries already present for terminally ill patients.
  • Doctors have urged lethal drugs on sick patients who did not ask for them.

Hollow safeguards and neglectful oversight

And it’s not difficult to show that, under the Oregon model mimicked by this bill, that:

  • Misdiagnosis and incorrect prognosis, common in medicine, can end lives prematurely
  • People with limited means can use the law to die quicker, in order to save their families money—is that why its supporters would vote for it? Because nothing can prevent that outcome
  • Also that negligent medical personnel are explicitly free of any liability for their negligent actions
  • People with intellectual and communication disabilities, and with dementia, are at particular risk
  • Abuse is not investigated; there isn’t even a way to report it. Thus, it’s not what the Oregon data shows – it’s what it fails to show. The data shows no abuse because the system is set up not to find it.

Suicide contagion

An additional problem is suicide contagion, a very real phenomenon in society. In Oregon, government reports—not from the department providing weak oversight of assisted suicide, but a very pro-active agency that tries to prevent suicides in general—reports that Oregon’s suicide rate is 41% above the national average, and that all the growth happened since 2000, which is just after assisted suicide became legal.

Is this suspicious association a coincidence? What my organization hears from people with psychiatric disabilities says otherwise. Individuals who struggle with suicidal feelings tell us that legalizing assisted suicide is like society sending a green light that committing suicide is OK. It encourages it.

One such person sent an anonymous letter to legislators in another state, opposing a similar bill, saying “the life you save, could be my own.”

Far more proposals defeated than passed

All this is why seven U.S. states so far this year have rejected the same bill, including New Mexico, Maryland, and Indiana; and why, overall, about 29 states have similarly said no.

H 54 is bad medicine for Alaska. In the name of social justice, please defeat it. Thank you.

Australia: Liz Carr Singing and Talking Against Assisted Suicide

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Anyone who reads this blog or follows the international euthanasia/assisted debate should be familiar with Liz Carr – whose website describes her as an actor, comedian, presenter, and activist. The list is too short – she’s also a documentary film maker and a playwright. She’s in Australia right now, with her musical “Assisted Suicide – The Musical.”

While in Australia, she’s doing her best to promote the perspective of disabled people like herself who oppose legalized assisted suicide for nonreligious reasons. Below is a close-captioned video of Liz speaking to the Victoria Parliament on March 22nd, 2017. It is over 30 minutes long and worth listening to each and every minute. She doesn’t waste a word.

Liz is also hitting the media – talking about her musical and the underrepresented disability perspective on assisted suicide and euthanasia. The following is a clip from an Australian morning news show. The closed captioning on this video is of a lower quality than in the previous one, but should allow readers to follow – if you can read really fast.

 

Bipartisan Agreement on Killing Disabled People

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Although most people, policy makers and media, are not talking about people with disabilities, we’re acutely aware of the disparate ways that both the right and the left are fine with policies that will clearly lead to our premature deaths, along with the millions of seniors who depend on Medicaid to supplement Medicare.

On the national scene, the American Health Care Act (an oxymoron if ever there was one) threatens coverage of the care we need to survive, be as healthy as possible, and live in our own homes, not nursing homes. As Bruce Darling, CEO of the Center for Disability Rights, wrote in an op-ed entitled Disabled New Yorkers will lose their independence, suffer and die:

Medicaid pays for a wide range of services and supports for disabled individuals and seniors:

  • The community habilitation worker who takes developmentally disabled individuals to the grocery store;
  • The attendant that supports an elderly woman staying in her home;
  • The custom wheelchair and speech-board — like those used by Stephen Hawking — that makes college and employment possible for a young woman with muscular dystrophy;
  • The ventilator used by the young man who became a quadriplegic on the football field.

Scores of disability activists protested the bill and closed down the U.S. Capitol rotunda yesterday, with 54 arrested by police, including Not Dead Yet’s Anita Cameron. It took this loud and strong action to get at least some attention paid to the mass devastation inherent in AHCA. Here are some examples of press taking notice:

On the other side, we have physician assisted suicide bills moving forward in Hawaii, Maine and Nevada, with similar bills introduced in about a dozen other states. If any readers don’t think assisted suicide is relevant to disabled people, John Kelly sums it up nicely in his op-ed this week in the Santa Fe New Mexican concerning the NM assisted suicide bill SB 252:

Millions of people now face the prospect of losing health insurance if Congress repeals the Affordable Care Act. That will mean even less choice. SB 252 would have put depressed people with a serious health condition or disability at risk. . . .

We now have 25 years of reports from Oregon and Washington, which show that pain (which includes fear of pain) is the sixth-cited of seven “end-of-life concerns.” Oregon physicians report giving lethal drugs mainly due to psychosocial distress about disability, including dependence on other people (“losing autonomy,” 91 percent), grief over lost abilities (90 percent), loss of the respect of others (“loss of dignity,” 77 percent), needing help with incontinence (“losing control of bodily functions,” 47 percent) and believing that suicide would leave loved ones better off (“burden on family, friends/caregivers,” 42 percent).

What we disabled people see in legalizing assisted suicide is that some people receive suicide prevention, while others get suicide assistance, based on value judgments and prejudice. Instead, let’s make sure that people have the choice and support to live — and die — comfortably, at home, with pain controlled and dignity intact.

The New Mexico assisted suicide bill was defeated in a bipartisan vote that hopefully demonstrates a welcome insight on the issues.

Still, it feels like people with disabilities are stuck in a room between walls on the right and the left, closing in on us.

Disability Advocates In D.C. Area Needed To Help Protect Medicaid

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Not Dead Yet is among many disability organizations that work to protect and expand health care programs for all people. The disability community significantly depends on publicly funded health care. In general, the private insurance industry sees many of us as a drain on their bottom lines. It’s not complex economics, but simple revenue (premiums) minus expenses (health care provided) equals net profit. Public relations language about “consumer choice” and “access” to coverage cannot hide this simple equation.

Next Wednesday, disability advocates will have an opportunity to support federal legislators who are working to protect Medicaid by attending a press conference being led by Pennsylvania Senator Bob Casey. Here are the details from the Senator’s advisory:

U.S. Senator Bob Casey (D-PA) will lead the disability community in a opposing TrumpCare’s decimation of Medicaid, Wednesday, March 22nd at 11:00am. Joined by disability advocates from across the nation and members of the Senate, Casey will detail how TrumpCare ends Medicaid by turning it into a block-grant program, resulting in $880 billion in cuts over the next decade. TrumpCare’s draconian cuts to Medicaid will mean substantially less care for those with disabilities.

March 22nd Details

Event:                   #SaveMedicaid
Date:                       Wednesday, March 22nd
Time:                     11:00-11:45 a.m.
Place:                     East side of the Capitol across from the Senate
Speakers:              Senator Bob Casey and other Members

Not Dead Yet encourages disability advocates to lend their presence and voices to this and other critical efforts to save our healthcare and our lives.

After writing the above, I also saw an announcement that the National Council on Independent Living is calling for simultaneous press conferences across the U.S. You can read their Action Alert here, including a toolkit and other helpful information.