The disability community has been trying to have honest end-of-life conversations for years.
After all, we’re the real experts on the front lines of the health care system that serves (and, sadly, often underserves) dying people. But for the most part, the megaphone has remained firmly within the grasp of the assisted suicide lobby and its well-intended supporters, many of whom haven’t been exposed to complete information about the construction, operation and consequence of such laws.
Last week, California became the fourth state to legalize assisted suicide, providing the state’s imprimatur on the notion that some suicidal people warrant suicide prevention services and some warrant help getting the job done.
Tragically, the only difference between those two groups is their health status or disability. Those already at increased vulnerability for depression and abuse because of their failing health are the ones who get state-sanctioned assistance with their suicidal ideations.
Soon after Brittany Maynard became the long-awaited face of the right-to-die movement, the assisted suicide lobby (Compassion & Choices) enjoyed a fresh crop of proposed bills in sixteen states, with twelve defeats, California passing last week, and three others still pending.
Although this whole ugly business seems far more palatable when such noble aims as pain mitigation are headlined, 17 years of available data do not bear out this claim. Oregon’s annual report data demonstrate that it’s social factors that propel assisted suicide requests. According to one study, “loss of autonomy” (92 percent), “less able to engage in activities” (89 percent), “loss of dignity” (80 percent), “loss of control of bodily functions” (50 percent), and “feelings of being a burden” (40 percent) were the main reasons patients said they wanted to commit suicide. Pain did not even break the top five.
It is dangerous business for public policy to tether dignity to independence. Functional loss and disability nearly always accompany a terminal diagnosis. Linking dignity to independence brands scores of people, including those who age into or acquire disabilities and who depend on others for personal care, as living undignified lives.
Legalizing assisted suicide sends the message that feeling like a burden is not only an acceptable reason for suicide, but a justification for our health care system to provide someone the lethal means. Assisted suicide laws reinforce the very societal prejudice that disability rights laws were meant to dismantle and shifts the focus from respecting and accommodating people with disabilities and illnesses to assisting them to die.
Perhaps the greatest disappointment to disability rights advocates in Governor Brown’s signing the assisted suicide bill into law last week was his hook-line-and-sinker belief in the unsubstantiated safeguards these laws offer.
The truth is, the safeguards that have been put in place to prevent mistakes and abuse are tremendously ineffective.
Coupled with problematic monitoring and data management, assisted suicide can easily take place outside of the legal framework with neither meaningful oversight nor investigation.
Professional peddlers of the “dignity” and “compassion” myths tell policymakers and the public that there hasn’t been a single case of abuse in states where these laws have been on the books. This is dangerous fiction. Truth is, the system wasn’t set up to find any.
All reporting about doctor-assisted deaths is self-reported, which is like asking drivers to tell their states each year whether or not they ever rolled a stop sign or drove above the speed limit. Further, assisted suicide laws don’t grant the department of public health investigatory authority and resources, foreclosing investigations of abuse or coercion. It all but ensures the record of these laws will appear above reproach.
After assisted suicide became legal in Oregon and concerns about abuses were raised, Dr. Katrina Hedberg of the Oregon Department of Human Services stated: “We are not given the resources to investigate,” and “not only do we not have the resources to do it, but we do not have any legal authority to insert ourselves.”
That means that as the abuse of elders and people with disabilities is on the rise nationwide, under these laws, an abusive caregiver could easily steer someone towards assisted suicide, witness the request, pick up the lethal dose and even administer the drug. Without witnesses required at death, who would know? And without the ability to investigate any reports, it wouldn’t matter anyway.
The assisted suicide lobby also claims that assisted suicide is about choice and autonomy, which is far from reality.
Every health insurance coverage decision is based largely on financial considerations, with insurance providers often overriding physician recommendations due to cost.
When doctor-recommended treatments are denied, or even delayed, assisted suicide is no longer reflective of a patient’s true choice.
While asserting that insurance providers will choose their bottom line over patients may seem like hyperbole, that’s exactly what we have seen happen in Oregon.
Proponents of legalized assisted suicide don’t deny the financial influence of this legislation. Derek Humphrey, founder of the Hemlock Society (which has since become Compassion & Choices) acknowledged that the connection between assisted suicide and the “cost, value, and allocation of health care resources are part of the political debate, albeit frequently unspoken.”
One thing is clear:
Where assisted suicide is legal, there is no doubt that some people’s lives will be ended by mistakes and coercion. We’ve already seen this happen under the assisted suicide law in Oregon. It’s clear that the conversation is moving in the wrong direction.
Instead of assisted suicide, we should be talking about providing adequate, affordable supports and services for people living with disabilities and illnesses, and making sure palliative and hospice care options are readily available.
Doctor-prescribed suicide is never the best medical treatment for anyone.
People with disabilities and illnesses must be supported in living, not dying.
Lindsay Baran is a policy analyst with the National Council on Independent Living, a cross-disability, grassroots organization, and Anne Sommers is the chair of Not Dead Yet, a national, grassroots disability rights group.Their article appeared in the Washington Examiner on October 19, 2015. Reprinted with permission.
[By Lindsay Baran & Anne Sommers, http://www.patientsrightscouncil.org/site/update-078-volume-29-number-4-2015-4/ ]