The Institute of Medicine recently solicited organizational statements of commitment in connection with its report on Dying in America. The IOM is holding a meeting on Friday, March 20 that’s open to the public and accessible online.
Not Dead Yet committed to work on advance care planning and professional education. To be honest, we aren’t necessarily doing what the IOM has in mind. We are very concerned that health care providers don’t always discern the difference between providing “end-of-life” care and ending lives prematurely due to negative quality of life judgments about disability. We are also concerned that advance care planning programs have incorporated negative societal stereotypes about living with disability into materials that encourage people to forego life saving treatment rather than survive with a disability. There’s a right to refuse treatment, but it’s supposed to be based on informed consent.
Established programs for advance care planning (ACP) were developed without input from people with disabilities who have first hand knowledge of how to live happily and productively with significant disabilities or chronic illnesses. As renowned palliative care physician Ira Byock said regarding the exclusion of the disability perspective from the “end of life” initiatives of the 1990’s, “It was a deliberate decision — and it was irresponsible.” (A deliberate decision? Does end-of-life group shut out disability perspective? Ragged Edge Online, July 21, 2003.)
The result of that exclusion is that ACP was infused with common societal prejudices about disability, with materials often suggesting that disability is a fate worse than death and encouraging people to give up their lives by refusing life sustaining care rather than adapt to disability. Whatever the good intentions of those involved, ACP materials are permeated with the “better dead than disabled” message.
To read the full NDY Statement, go here.
The Autistic Self Advocacy Network (ASAN) submitted comments which highlighted concerns about disability bias in connection with health care decisions by surrogates.
Many people with disabilities live long lives, punctuated by acute health crises that may be life- threatening. Often, whether or not a health crisis is seen as “the end of life” depends on whether a person – or the person’s surrogate decision-makers – decide to pursue life-extending treatment.
Recently, the Autistic Self Advocacy Network submitted an amicus brief in Disability Rights Wisconsin v. University of Wisconsin Hospital Centers, et al. One of the incidents giving rise to that lawsuit was the death of a thirteen-year-old boy with developmental disabilities, which serves as a stark example of how decisions about survivable illnesses can become “end-of-life” decisions as a result of doctors’ and substitute decision-makers’ negative attitudes about disability.
For the full ASAN Statement, go here.
The National Council on Independent Living expressed concerns about the risks that financial cost cutting pressures in the health care system pose risks to people with disabilities.
It is important to note that disability is a large component of many end-of-life discussions. Whether individuals are having end-of-life conversations due to aging, chronic conditions, or terminal illness, disability often accompanies these processes, resulting in functional losses that become pivotal in the decision-making process.
. . . Of particular concern is the recommendation that “frequent clinician-patient conversations about end-of-life care values, goals, and preferences are necessary to avoid unwanted treatment”, and equally concerning is the recommendation that these conversations be incentivized. A significant fear on behalf of the disability community is that incentivizing these conversations could in turn incentivize doctors to base conversations and recommendations on cost-cutting measures.
For the full NCIL Statement, go here.
The webinar is of the March 20 IOM meeting is free and does not require prior registration.
I’m back- been away due to severe escalation of both CFS/ME (Chronic fatigue syndrome) and allergic asthma since the mold in my bathroom was worked on by my landlord. After losing a great deal of weight quickly due to so many foods relate to mold (e.g. a baked potato came from the earth and triggered asthma, etc.) that didn’t ordinarily, I asked to be taken to my local hospital. I have not seen a doctor in many years: it’s safer that way if you’re very allergic.
Right now, out of hospital (less than 2 week stay where they never heard of CFS so the treatment was “off”), I’m in CFS fog (cognitive) as the medication mistakenly prescribed to me
for depression is wearing off. (I don’t have depression.)
During the height of tough times in the hospital stay, when I was in despair at the staff who treated me as if I was slightly more than a baby, I had thoughts about assisted suicide and suicide in general. I had moments when I would have given anything to “disappear”. I even asked for meds to put me out and let me be unconscious. Yet, if faced with something that could kill me, I never could use it.
With that in mind, I can see, really understand, how some people want to die rather than live.
Put all that in the context of the cut and dried statements about “assisted suicide” and one wonders, who represents us, the severely ill and disabled and elderly (overlaps included)? The answer, of course, is us: we the disabled represent us. Good luck to us all.
@Sandra: I’m so sorry you had to suffer through a terrible experience but am happy you are back on the other side and continue to be opposed to PAS as ugly public policy that targets the disabled, the elderly disabled, the poor, etc.. for hastened and premature death to save money for Medicaid and now, Medicare, and their private partners, BIG INSURANCE.
Hope you are back doing your art work and have some joy in your days!