Ableism in Medical Care Has Life or Death Consequences
Melissa Hickson’s husband, Michael, was a 46-year old quadriplegic suffering from COVID-19 who died after the hospital ended his treatment because of what they considered to be his low quality of life. Hickson’s experience, like mine, highlights the ableism that permeates our medical system and often results in a refusal to treat those whose lives are considered not worth living.
Navigating a system where the doctors and insurers hold all the power is overwhelming, but that is where I found myself in May 2014. When my late husband, J. J. Hanson, unexpectedly had a grand mal seizure at 33 years old. I quickly realized that J.J. would surely die if I did not advocate fiercely on his behalf.
After his bloodwork and CT scan came back normal, the ER nurse informed us J.J. would be discharged that evening. I asked if they had done an MRI and I was told that our insurance had a high deductible and an MRI was not necessary. I insisted that they do an MRI before J.J. was discharged.
The next morning, the neurologist planned to send J.J. home without medications because about half of the people who have seizures never have one again. When I inquired about the results of his MRI, I was shocked to learn that the neurologist did not know that J.J. had had one, let alone the results. After reviewing the results, the doctor informed us J.J. had two lesions on his brain and a biopsy was needed to determine if the lesions were cancerous.
I shudder to think of what would have happened if I had not insisted on the MRI.
The biopsy revealed J.J. had stage 4 glioblastoma multiforme, the most aggressive form of brain cancer. The news was devastating and terrifying. Worse still, the neurosurgeon told us the cancer was inoperable and that J.J. only had four months to live. We were given no hope and the neurosurgeon never suggested we get another opinion. He told us to go home and enjoy the little time we had left together with our one-year old son.
Thankfully, we did not listen to that surgeon or the two other doctors who told us there was nothing we could do. Once J.J. regained his speech and comprehension, we sought out other opinions until we found a skilled neurosurgeon willing to do surgery. J.J. responded well to treatment and outlived his prognosis by over three years. During that time, our son created priceless memories with J.J. and we welcomed a second son into the world. We would have missed out on so much if I had not been there to advocate on J.J.’s behalf.
We were lucky. If J.J.’s grand mal seizure had caused permanent brain damage or paralysis, I might have found myself in an even more difficult situation like the one Melissa Hickson encountered. Her husband’s doctor informed her that they were going to stop treating him because of his “low quality” of life. It is painful to see the look in the doctor’s eyes when they have given up hope, but even more painful when they deem care unnecessary because of an arbitrary quality of life judgment.
In his final days as he battled terminal cancer, J.J. chose to fight against this ableism in our medical system which has perhaps its most deadly expression in assisted suicide policy. Assisted suicide sets up a two-tiered system where some people get suicide prevention and the standard of care, and others, namely those with life-threatening disabilities, get suicide assistance and healthcare rationing. This insidious form of ableism results in death to the devalued group, and nothing could be more discriminatory.
Having a life-limiting disability himself, he realized that the disability community’s concerns with assisted suicide were warranted. Nearly every national disability organization opposes assisted suicide and, in states where it is legal, the most common reasons that patients end their lives by assisted suicide are all disability-related. This is one of the many reasons a recent federal study by the National Council on Disability found assisted suicide laws rife with dangers for people with disabilities.
Everyone has a right to equal quality of care. J.J. and I should have been given medical options and hope despite his life-limiting disability and grim prognosis. Michael Hickson’s medical team should have delivered wanted care despite the fact that he was a quadriplegic with cognitive and vision loss. And terminal patients seeking out suicide at the end of life deserve suicide prevention and the standard of care, just like the rest of us. We should reject ableism in all its forms, but especially in these life and death situations.
Kristen Hanson, Community Relations Advocate with the Patients Rights Action Fund.