THE National Council on Disability (NCD)--an independent Federal agency that advises the president and Congress--has released a study examining decisions by health-care providers to withhold or withdraw lifesaving or life-sustaining medical care for people with disabilities.
The study, "Medical Futility and Disability Bias," found many health-care providers critically undervalue the life of those with a disability, where they deem treatment "futile" or "nonbeneficial"--oftentimes despite the wishes of the patient to the contrary. They at times may rush medical determinations without properly following well-established guidelines, such as in the case of persistent vegetative state.
In its review, NCD highlighted well-documented examples of doctors misperceiving people with disabilities to have a low quality of life when, in reality, most report a high quality of life and level of happiness, especially when they have access to sufficient health-care services and supports. These misperceptions of health-care providers can be the result of failing to separate acute symptoms from one's underlying disability when making medical judgments and can lead to the withdrawal of necessary medical care from people with disabilities.
Moreover, hospital ethics committees charged with mediating and rendering medical futility decisions are subject to financial, professional, and personal conflicts of interest, and legal patient protections against this form of discrimination are sporadic across states. All states have at least one statute that relates to medical futility--whether it be by shielding a health-care provider's decision to deny life-sustaining care, protecting the patient's right to life-sustaining care, or something in between.
Very rarely do medical futility disputes make it to a court of law due to financial and time constraints.
"It is very disturbing that 19 states, plus Guam and the U.S. Virgin Islands, have laws that allow health-care providers to deny life-saving or life-sustaining treatment and provide no protection of a patient's wishes to the contrary," says NCD Chairman Neil Romano. "We know too many people with disabilities who were told or whose parents were told that they'd never live to see a particular birthday and, decades later, their lives and contributions challenge the maxim that doctors always know best--and in these instances, we're talking about implications of life and death."
Key findings from the study include: