In the debate over the public policy of legalizing assisted suicide, proponents of so-called “Death With Dignity” acts often tell personal stories of a loved one’s difficult experiences while dying.
When I hear that someone was screaming in pain, my first thought is “malpractice.” My father died of bone cancer, a very painful type of cancer, and he had pain medications prescribed by his oncologist, but was still in a lot of pain and could barely stand to move. Then he agreed to forego aggressive treatment and go into hospice. The hospice nurse adjusted his medications, and his pain virtually disappeared – he got up, went to see his neighbor and played putt-putt golf in the living room.
He lived about three more months, and stayed under the care of that nurse until the end. Sadly, she told me that she was being forced to spend increasing amounts of time documenting care due to managed care, rather than providing care to her patients, and as she tried to do both, her work was eating into her time with her family, so she decided to quit. That was 15 years ago.
So when I hear stories of painful deaths, I think about my dad’s well-meaning but ignorant oncologist, the wonderful hospice nurse, and the ensuing progress in palliative care. When a nationally respected palliative care physician like Dr. Ira Byock says that assisted suicide is not progressive, people should listen. But personal stories carry so much more weight.
So we need to tell our stories. People with disabilities have a lot of experience with doctors, hospitals and health insurance. That’s just reality. And our experiences profoundly affect how we see the assisted suicide issue. All of the major national disability organizations that have taken a position on assisted suicide oppose legalization. I think that is a direct reflection of the shared experiences of our community.
One common experience is having a need for health care treatment that is not covered because it costs too much. Do you know why Medicare doesn’t cover hearing aids? I used to work for a federally funded assistive technology center, so I asked this question of a federal official during a conference call training. The answer was that so many seniors need hearing aids that it would cost too much, so hearing aids are not covered by Medicare.
In the assisted suicide context, denial of needed health care is very relevant. The Disability Rights Education and Defense Fund coined the phrase “Deadly Mix” to refer to this concern: Assisted suicide is a deadly mix with our profit-driven healthcare system. At $100-$300, assisted suicide will be the cheapest treatment. Assisted suicide saves insurance companies money.
The infamous cases of “Deadly Mix” from Oregon are those of Barbara Wagner and Randy Stroup, who received letters from Oregon Medicaid denying coverage for prescribed chemotherapy but mentioning that the state would cover the $100 cost of assisted suicide. In response to media coverage of the letters, the Oregon Medicaid agency stopped sending this type of letter, but that doesn’t change the economic realities.
There have been some powerful personal stories in Connecticut on the Deadly Mix issue. One came from Elaine Kolb, a lesbian disability rights activist and songwriter who wrote and sings a song entitled “Not Dead Yet”, recorded during a March 14 press conference and posted on You Tube. At the March 17 assisted suicide hearing in Hartford, Elaine testified powerfully about the pressures health care providers put on her partner to forego life-sustaining treatment. To see Elaine’s testimony, readers can go to the Connecticut legislative website recording, beginning at 2 hours and 30 minutes. CT News Junkie also reported a central concept of the disability witnesses and quoted Elaine.
People with disabilities have been among the bill’s most outspoken opponents. While supporters often refer to the legislation as “death with dignity,” some with disabilities see the term as a disparaging statement that likens a loss of faculties with a loss of dignity.
“They are saying that ‘I’d rather be dead than be you,’” Elaine Kolb, a disabilities activist, said. “. . . This is something that people are saying to people with disabilities and there is contempt in it and there is contempt in this bill.”
Cost cutting pressures also impact our nation’s elders. Elaine called my attention to the personal story of a friend of hers, Joan Cavanagh, identified as “a life-long human rights and anti-war activist.” The New Haven Register published her op-ed describing her experience fighting for her mother’s life:
I had a painful and frightening time for many years trying to get my Mom life-sustaining treatment. The health care system had no use for her because she was old, suffering from dementia, and poor. . . .
I had been her primary caregiver for 16 years while she lived at home and her health care agent while she was in a nursing home for four years. In the later years, I was continually pushed by medical providers to limit her treatment, change her code status to DNR/ DNI [Do Not Resuscitate/ Do Not Intubate], and/or put her under hospice care, against both her wishes and mine. During one emergency room visit, a doctor actually said that “society should not be expected to bear the cost” of trying to find out whatever was causing her current problem at age 86. (At that time, it turned out to be an easily treatable urinary tract infection.)
For Cavanagh’s whole story, which she noted is not uncommon among other caregivers she knows, go here. In my view, her conclusion is inescapable:
Given the current health care system, its increasing focus on “cutting medical costs” and the fact that some lives are clearly deemed expendable, it is neither compassionate nor wise to support any measure that would, intended or not, legalize further pressure and abuse. When I think of the incessant harassment to which I was subjected to make a decision that I could not in conscience make, I have no doubt about the even greater coercion to which a seriously ill person (and their caregivers) would be subjected to end their too expensive life if assisted suicide is made legal.
I served on the boards of statewide Medicaid consumer advocacy organizations for many years, often as the only person with a disability in a group of progressive healthcare policy advocates. The logic of the Deadly Mix argument is grounded in health care system failings that we fought at every turn. The only reason I can think of that more progressives have not taken a stand against legalization of assisted suicide is that our opponents got the jump on us in the media years ago by framing the debate as “compassionate progressives” versus the “religious right.” It’s time for everyone to catch up. Health care cost cutting pressures and legalized assisted suicide are a bad combination. It’s not rocket science, just simple economics. – Diane Coleman
First–as of today, I don’t have a disability. I have, however, spent most of my life working with children who have developmental disabilities. Over the years, people have said very shocking things to me–for brevity’s sake I summarize as : “Will ‘these people’ ever be contributing members of society?”–usually meaning, “Won’t they cost the rest of us a lot of money?”
I absolutely reject this line of thinking. But I have also seen a great deal of medical intervention that seems to prolong suffering–and which, for all the expense, people feel pressured to accept for themselves, or their loved ones. Recently I went to a workshop
about people with Alzheimer’s– sometimes when they can no
longer chew or swallow–their family members want gastrostomy tube feeding. Isn’t the terror of these realities part of what draws
people toward assisted suicide?
Alas, political “Progressives” (and I consider myself to be one) have the same characteristics
of other humans. Progressives who are not disabled are often afraid of disability, afraid
of people who are disabled (“disabilophobia” I’ve named it ). I have noticed all kinds of
“distancing” by older/old progressives who see disabled people as “them”, as in “I’m
not one of them.” as they continue in some form of their professional lives.
PS One more senior moment: I just noticed a typo in my filling in of website and have corrected it. I suspect due to my lack of tech, I’ll have to do it each time I comment……
Amen, Diane! Contempt is all too often disguised as compassion amongst those DGLs (darn good liberals).
You are so right! Any kind of physician- assisted suicide that implies state/federal sanction of hastening death or shortening life does endanger the elderly and the disabled on Medicare and Medicaid because of the for-profit structure of our health care system.
The for-profit partners of Medicare and Medicaid, Big Insurance,have already influenced “original Medicare” to reduce benefits under the people’s social programs of Medicare and Medicaid that are supported by taxes paid by Americans all of their working lives. When Big Insurance invaded the People’s Medicare Purse to earn record profits for themselves, (like $2.1 Billion by United Health in 2013) does this endanger “original Medicare” as envisioned by its founders? Do we now have to euthanize the elderly/disabled on Medicare/Medicaid, when they become the victims of unreimbursed adverse events, in order to ensure the viability and profitability of Big Insurance Companies?
Unfortunately, the reimbursement protocols developed by CMS and their private partners, the GAP and Advantage Insurers, these last eight years or more have produced a very hostile environment for the elderly/disabled patients on Medicare/Medicaid when their hospital treatment is NOT reimbursed and they become charity patients for the hospitals.
Unfortunately, there appears to be no law under Medicare or Medicaid wherein patients have to be informed that they are the victims of adverse events in hospitals and that their treatment within the hospital will not be reimbursed under their Medicare/Medicaid insurance. I find this alarming and suspect, especially when the OIG of HHS indicates that hospital mistakes and errors are an ongoing problem that is not been solved because of the Balkanization of state laws regarding “inspections” and weak federal policy regarding inspections and disclosure of adverse events and the results of inspections in hospitals.to the patients subjected to these adverse events and to the general public.
We do have The Association of Heath Care Journalists who indicate that they work to provide the American public with all of the information that “they have a right to know” but for some reason this organization has done no reporting on the epidemic of unilateral covert and DNR Code Status that is hastening the death of the elderly/disabled for fiscal expediency? Perhaps, this is because both political parties are complicit in providing the unilateral DNRs for fiscal expediency and in “corporate journalism” reporters have to straddle both political parties to remain neutral and to serve the “public good” as determined by The Congress and the special interests who educate them.
Who will protect the elderly/disabled from involuntary euthanasia that is hidden from view? I am for “single pay” as originally envisioned in Obama care and advanced by Public Citizen where Medicare for everybody would not be infected by for-profit insurance goals. . .
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