The Oregon model embodies the “better off dead than disabled” ethos in thin disguise.
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| Lisa Blumberg |
In 2014, in connection with whether assisted suicide laws would ever be expanded to include people with cognitive decline, Barbara Coombs Lee, then director of Compassion & Choices, said, “It is an issue for another day but is no less compelling.” This was a momentary slip.
The political strategy of Compassion & Choices, the primary organizational proponent of legalized assisted suicide, has always been to sell the concept to state legislatures by asserting that it would only be an option for the dying. They advocate for the Oregon model where eligibility for a lethal prescription is limited to those who due to a terminal illness have less than six months to live. The argument goes that assisted suicide has nothing to do with disabled people except those who happen to be dying.
Scratch the surface and the picture is different. Legalized assisted suicide has a disproportionate impact on people with disabilities for several reasons.
First, virtually all people who are terminally ill have health related functional impairments. The leading reasons why individuals choose assisted suicide are disability related and psychosocial in nature such as perceptions of lessened autonomy. One study indicates that a fear of going into a nursing home – which is a quite reasonable fear for many people with disabilities – is much more likely to fuel a desire to hasten death than pain. In other words, people think about suicide not because death may be near but because they are unsure about how to deal with the practical problems and devaluation that come with needing help or accommodation in daily activities. As Vincenzo Piscopo, CEO of United Spinal Association has said,
The second reason is that for purposes of determining eligibility, doctors may take a very expansive view of what constitutes terminal illness. One example is anorexia. A Colorado doctor, who has provided lethal prescriptions to three young people with anorexia, has spearheaded an effort to recognize a new clinical disorder called “terminal anorexia”, which would apply to the small fraction of patients for whom “recovery remains elusive”. As recounted in the New York Times, the motivation for the label was that it would give people “a formal diagnostic acknowledgment that they were dying, making it easier for them to access hospice care — and even, should they want it, and should they live in a state where it is legal for terminally ill patients, and should their physicians be willing, a physician-assisted death.” This is circular reasoning. In my opinion, it is prognosis by semantics. Fortunately, there has been considerable pushback by both health professionals and advocates.
In Colorado in 2023 though, 9 people died by assisted suicide where the terminal condition was identified as “severe protein calorie malnutrition.” Before 2021, no such cases were reported. In California in 2023, 11 people reported to have endocrine, nutritional and metabolic disease died by assisted suicide. It is not known how many of these people in these states had eating disorders or restricted caloric intake for other reasons.
Third, the ethicist Thaddeus Pope promotes voluntarily stopping eating and drinking (VSED) as a “bridge” to assisted suicide under the Oregon model. He has described a case in Oregon where a woman with early dementia, who didn’t qualify for assisted suicide any other way, used VSED with the help and support of her medical team for four days whereupon she was diagnosed with the “terminal disease” of dehydration. She requested a lethal prescription and promptly received it, with the waiting period between the two requests being waived, because she now had a short life expectancy (without treatment). Pope is candid that she made herself terminally ill as determined by her doctors and is untroubled by it.
Every competent adult has the right to decide what to eat and drink and whether to eat or drink at all. The issue here is selectively promoting VSED as a back doorway to assisted suicide. This would mean that with a doctor’s cooperation, any significantly disabled person could meet eligibility criteria by manipulating circumstances to become terminally ill. Indeed, the idea of medical complicity in making someone eligible for assisted suicide is extremely chilling and has obvious implications for the whole disabled community.
The fourth reason is that in large part due to the health disparities we are subject to, people with disabilities face a greater incidence of physical and mental ailments, including obesity, diabetes, cardiovascular disease, addiction, and mental distress, as well as increased rates of morbidity and mortality. According to a piece in Stat, nearly half of people with disabilities say they are in bad health. Statistically, this means people with pre-existing disabilities become eligible for assisted suicide under the Oregon model before others do. Moreover, suicide prevention services are among the health care services that we struggle to access. It is a perfect storm.
None of this is surprising. The premise of assisted suicide laws is that a person’s health status may make it reasonable for them to kill themself. The Oregon model embodies the “better off dead than disabled” ethos in thin disguise.
The political strategy of Compassion & Choices, the primary organizational proponent of legalized assisted suicide, has always been to sell the concept to state legislatures by asserting that it would only be an option for the dying. They advocate for the Oregon model where eligibility for a lethal prescription is limited to those who due to a terminal illness have less than six months to live. The argument goes that assisted suicide has nothing to do with disabled people except those who happen to be dying.
Scratch the surface and the picture is different. Legalized assisted suicide has a disproportionate impact on people with disabilities for several reasons.
First, virtually all people who are terminally ill have health related functional impairments. The leading reasons why individuals choose assisted suicide are disability related and psychosocial in nature such as perceptions of lessened autonomy. One study indicates that a fear of going into a nursing home – which is a quite reasonable fear for many people with disabilities – is much more likely to fuel a desire to hasten death than pain. In other words, people think about suicide not because death may be near but because they are unsure about how to deal with the practical problems and devaluation that come with needing help or accommodation in daily activities. As Vincenzo Piscopo, CEO of United Spinal Association has said,
“inadequate resources to provide home care and fear of being a financial or care burden is the motivation for overwhelmed severely disabled people to kill themselves.”
Of the 884 people who died by ingesting lethal drugs obtained under California’s assisted suicide law in 2023, 45 people were reported to have ALS, 24 had Parkinson’s disease and 8 multiple sclerosis. The hallmark of these conditions, although they may have end stages, is physical disability.
The second reason is that for purposes of determining eligibility, doctors may take a very expansive view of what constitutes terminal illness. One example is anorexia. A Colorado doctor, who has provided lethal prescriptions to three young people with anorexia, has spearheaded an effort to recognize a new clinical disorder called “terminal anorexia”, which would apply to the small fraction of patients for whom “recovery remains elusive”. As recounted in the New York Times, the motivation for the label was that it would give people “a formal diagnostic acknowledgment that they were dying, making it easier for them to access hospice care — and even, should they want it, and should they live in a state where it is legal for terminally ill patients, and should their physicians be willing, a physician-assisted death.” This is circular reasoning. In my opinion, it is prognosis by semantics. Fortunately, there has been considerable pushback by both health professionals and advocates.
In Colorado in 2023 though, 9 people died by assisted suicide where the terminal condition was identified as “severe protein calorie malnutrition.” Before 2021, no such cases were reported. In California in 2023, 11 people reported to have endocrine, nutritional and metabolic disease died by assisted suicide. It is not known how many of these people in these states had eating disorders or restricted caloric intake for other reasons.
Third, the ethicist Thaddeus Pope promotes voluntarily stopping eating and drinking (VSED) as a “bridge” to assisted suicide under the Oregon model. He has described a case in Oregon where a woman with early dementia, who didn’t qualify for assisted suicide any other way, used VSED with the help and support of her medical team for four days whereupon she was diagnosed with the “terminal disease” of dehydration. She requested a lethal prescription and promptly received it, with the waiting period between the two requests being waived, because she now had a short life expectancy (without treatment). Pope is candid that she made herself terminally ill as determined by her doctors and is untroubled by it.
Every competent adult has the right to decide what to eat and drink and whether to eat or drink at all. The issue here is selectively promoting VSED as a back doorway to assisted suicide. This would mean that with a doctor’s cooperation, any significantly disabled person could meet eligibility criteria by manipulating circumstances to become terminally ill. Indeed, the idea of medical complicity in making someone eligible for assisted suicide is extremely chilling and has obvious implications for the whole disabled community.
The fourth reason is that in large part due to the health disparities we are subject to, people with disabilities face a greater incidence of physical and mental ailments, including obesity, diabetes, cardiovascular disease, addiction, and mental distress, as well as increased rates of morbidity and mortality. According to a piece in Stat, nearly half of people with disabilities say they are in bad health. Statistically, this means people with pre-existing disabilities become eligible for assisted suicide under the Oregon model before others do. Moreover, suicide prevention services are among the health care services that we struggle to access. It is a perfect storm.
None of this is surprising. The premise of assisted suicide laws is that a person’s health status may make it reasonable for them to kill themself. The Oregon model embodies the “better off dead than disabled” ethos in thin disguise.
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