One of my friends is quite deft when it comes to juggling his life. In addition to working and doing all the other things he has to do every day, he lives with and takes care of his ninety-year-old mother, who is deep in the throes of dementia.
He talks often about his mother. But it’s not what you might think. It’s never in a mournful tone. He never comes off as someone who’s tormented by watching a loved one suffer; he just shrugs and moves on. He never appears to be too stressed out about it. He seems like someone who is just doing what he has to do.
So one day I finally said something about his mother’s situation that I’d been thinking about for a long time. I said I wondered how much someone who is as far down the dementia road as her is really suffering. Sure, it’s mighty painful for us who are watching from the outside to see someone spinning further and further away from being the person we had known them to be. But what about her? By this point, she doesn’t realize who she once was or how different that is from who she is now. She just knows what’s here and now. Sometimes my friend says she’ll enjoy a pleasant visit from a dead relative. Is being reunited with someone she doesn’t realize is long dead such a bad way for her to spend the day? It may be painful for us to watch, but is it necessarily painful for her?
I’d hesitated to bring this up because I didn’t want to risk offending him. He might think it was in bad taste for me to question how much his mother might be suffering. He might think I was diminishing what she was going through.
Indeed, my intention was to do just the opposite. I was trying to give her the benefit of the doubt. I was trying not to dehumanize her by passing judgment on the quality of her life based on my own observations. Because I think that if I ever need an organ transplant to save my life, I’m a goner, especially if I’m relying on Medicare or Medicaid to pay for it. And it would be because I was being dehumanized in much the same manner.
Human organs are in short supply. So when you need an organ, there’s a triage process involved. You get on a waiting list, and when your name comes up, someone decides whether or not, based on their own assumptions of your quality of life, you deserve to receive this precious organ.
I’m a senior citizen who has used a wheelchair all of my life. Because of that, I fear that I would surely be deemed unworthy of even being placed on a waiting list. If somehow I did make it (computer glitch?) and my name actually came up, I think it’s a good bet that I would be skipped right over and the organ would be awarded to the next person in line. Somebody who doesn’t know me would determine that it’s a waste of an organ to give it to a disabled old man. But even if I somehow manage to clear both of those hurdles, Medicare or Medicaid might decide that transplanting an organ into a disabled old man is a waste of money. Hell, a private insurer would most certainly think the same.
Organs are a metaphor, as being denied essential medical treatment in general is a well-founded fear for disabled folks. And dehumanization provides this ugly discrimination with the twisted rationalization it needs to flourish.
There are these things called QALYs, which stand for quality-adjusted life years. In 2019, the National Council on Disability (NCD) issued a report entitled “Quality-Adjusted Life Years and the Devaluation of Life with Disability.” The NCD is an independent federal agency with the mission of “making recommendations to the President and Congress to enhance the quality of life for all Americans with disabilities and their families.” As the title indicates, the report is scathingly critical of the very existence of QALYs, which it defines as a “metric often used to help calculate cost-effectiveness.” The report says that QALYs “aggregate quality and quantity of life simply by lowering the value of a year of treatment by the degree to which an illness, disability, or other health condition is perceived to harm the person’s quality of life during that year.”
This is a big problem, the report says, because “the QALY calculation reduces the value of treatments that do not bring a person back to ‘perfect health,’ in the sense of not having a disability and meeting society’s definitions of ‘healthy’ and ‘functioning.’ ”
In other words, transplanting an organ inside a disabled old man is a waste of money and organs.
Although QALYs have not historically been used to make treatment and benefits decisions in the United States, the federal government does not have a comprehensive policy on their use, according to the NCD. The report says, “Some agencies are banned from using QALYs to make benefits and coverage decisions, while others use them frequently.”
Being denied essential medical treatment in general is a well-founded fear for disabled folks. And dehumanization provides this ugly discrimination with the twisted rationalization it needs to flourish.
The NCD has also expressed deep concern that as the federal government looks for ways to make Medicare and Medicaid more cost-effective, it may be tempted to model at least parts of these programs after the public health insurance programs of other countries, such as the United Kingdom.
That’s a scary thought when you consider the case of Alta Fixsler. This was a big news story in the United Kingdom in 2021. Alta had sustained a brain injury at birth and required a ventilator to breathe and a feeding tube to take in nutrition.
In 2021, officials at the National Health Service foundation trust that was providing and paying for Alta’s care decided her life support should be removed, despite the vehement objections of her parents, who said taking her life in that fashion was strictly against her Jewish faith. They said they would take her to Israel, where arrangements had been made for her care. But a court would not allow that to happen.
Alta’s parents fought in the courts to keep Alta’s life support from being removed. But they lost. In October 2021, Alta’s life support was indeed removed. She died ninety minutes later. She was only two years old.
Matt Vallière, executive director of the Patients’ Rights Action Fund, wrote an op-ed in Newsweek about the cruel odyssey Alta and her family endured.
Vallière wrote: “Alta Fixsler’s death was a brutal tragedy caused by ableist, utilitarian assumptions about a young girl’s ‘quality of life’ by nondisabled people. The removal of life-sustaining care from a child with disabilities, based on prejudices about her disability, is unconscionable. Hospitals in the United Kingdom deny care to some children in the name of ‘saving’ them from a fate worse than death. No matter how hard parents may fight to protect their children, U.K. courts consistently side with hospitals’ unethical determinations, which disguise a form of eugenics under another name: ‘compassion.’ ”
He continued: “In these cases, the government not only blocks care for children with disabilities, but also devalues their human dignity through QALYs. Even if effective treatment options are available elsewhere, the QALY-based mindset—like the assumptions behind assisted suicide and euthanasia laws—presumes that living with disabling conditions is a fate worse than death.”
One of the NCD report’s recommendations is that Congress pass legislation prohibiting the use of QALYs by Medicaid and Medicare.
When I finally told my friend what I had been wondering, he kind of chuckled with a bit of relief and said he had been wondering much the same thing. Maybe that’s why he approaches his mother’s situation so calmly and with such humane resignation. Maybe he knows that it’s neither fair nor accurate to assume that disability necessarily equates to suffering. I don’t know. He didn’t say, and I didn’t ask.
My friend said that trying to understand what his mother is experiencing is kind of like trying to understand what death is all about. No one has ever returned from the inside to tell us what it’s really like. So all we can do from the outside is speculate.
But when it comes to living with a disability, I can definitely give an inside account—as many others have before me. I have been embedded in this body for well over sixty years. And I think I speak for a whole lot of us when I say that if I’m ever in desperate need of an organ and one becomes available, give it to me, damnit! Don’t pass me by! I deserve it as much as the next guy. If you end up as one of the coldly detached triage experts who decides who gets what, don’t assume that prolonging my life means prolonging my suffering.