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“A dream you dream alone is only a dream; a dream you dream together is reality.” — Yoko Ono
Feb
9
Deaf Woman Was Not Told Her Cancer Was Terminal
Filed Under disability, discrimination, human rights, women’s health | Posted by Cara |
I’ve heard a lot of heartbreaking and enraging stories in my lifetime, but this still manages to rank pretty highly up there. Health care providers never gave a woman with cancer and her husband, both of whom were deaf, a repeatedly requested interpreter. And thus, they weren’t told for three months that she was dying.
For three months, the Nelsons met with doctors at North Memorial Medical Center, but they weren’t aware Mary Ann was dying of cancer. In fact, they thought she was doing well enough in her battle with the disease that she could go to her retirement party. So they were stunned in March 2006 when her oncologist abruptly put an end to their hopes — and their request — with a terse note saying, “We can’t cure the cancer!”
It was the first time the Nelsons, both deaf, understood the cancer was terminal, according to the Minnesota Department of Human Rights. Mary Ann Nelson died in May 2006.
The agency pointed to the incident as an example of the medical team’s failure to communicate effectively with the Nelsons. This week, state regulators announced that North Memorial agreed to pay $105,000 to settle charges that Nelson and another patient were not provided access to qualified sign language interpreters. Often, David Nelson had to read lips or write notes to communicate with doctors and nurses, despite his repeated requests for an interpreter.
“It was extremely difficult and painful for them,” said Rick Macpherson, Nelson’s attorney. “They couldn’t ask any questions. They couldn’t have any discussion. They couldn’t get any kind of comfort.”
I imagine that this news is among the worst that can ever be received, even with all of the empathy in the world. The very idea of receiving it like this, and three months after it should have been received — precious time that very well may have been used quite differently had the information actually been conveyed — both makes me want to sob into my pillow, and causes my blood to boil.
Every person involved, from the doctors to the administrators, behaved appallingly and unforgivably. Mary Ann Nelson had her very basic right to information about her own health and her own medical treatment denied and betrayed. And those responsible, in addition to flagrantly violating the Americans with Disabilities Act, acted both in breach of basic medical ethics and basic human decency. Outside of a few strict exceptions (i.e. a patient is unresponsive or unconscious and in need of immediate care), everyone deserves and needs the right to make informed decisions about their course of medical treatment, and to fully understand their condition. That’s basic bodily autonomy, something that doesn’t become any less of a right just because a person needs an accommodation to access it. And basic bodily autonomy is something that both women and people with disabilities have been regularly denied.
And sadly, we can’t just trust everyone to treat marginalized people with dignity and respect. When people are marginalized, objectified, and discriminated against, they start to appear to us as less than human. As I find it hard to believe that so many doctors would find it acceptable to treat people this way — after all, while abled folks do regularly get appalling medical treatment, you don’t hear stories like this everyday — I can only, logically conclude that they perceived the Nelsons, because of their disabilities, as not really being people. They were treated like objects, there to act upon, things with whom its too much of a burden to communicate, who don’t deserve access to information, who don’t have any rights.
Oppression is capable of inspiring and supporting all kinds of atrocities. But this idea, that some people are worth less, that some people are too much trouble, that some people, for whatever arbitrary reason, are less deserving of rights and necessities than we are, is always at the root. Very frequently, it costs lives. This time, it “only” cost Mary Ann Nelson information about the last few months of hers.
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“Men, their rights, and nothing more; women, their rights, and nothing less.” — Susan B. Anthony
That is appalling! No one could even be bothered to type a fucking note?
Some of the comments at the Star-Tribune are deeply disturbing. Over and over we’re told that the Nelsons “should have brought someone along” to interpret for them, that “younger family members … could have been with them when they went to the doctor”. Leaving aside the disgusting victim-blaming: the notion, after all these decades, is still “If you’re hearing, you have the right to decide what your family members learn about your condition. If you’re deaf, your family have the right to decide what you learn about your condition.”
Sometimes the world just breaks your fucking heart.
Yeah.
But it’s against everything I’ve ever learned in any of my classes to have a family member or friend be the translator!!! GAH SMITE
So tragic.
I think I agree with almost everything in this post, except for one point that might seem trivial to others, but really isn’t–at least not to many of us who have experience with incurable cancers. In this post Cara said,
“everyone deserves and needs the right to make informed decisions about their course of medical treatment, and to fully understand their condition”
I’m not sure if Cara is saying that everyone (outside of those she excepted) needs THE RIGHT to fully understand their condition or if she means that everyone needs to fully understand their condition.
The issues surrounding just how much information a patient should be given is one that we discuss in my incurable/terminal cancer support group on a regular basis. Some patients really don’t WANT to know when/if they become terminal. Some people find it counter-productive to be told this and prefer to simply live each day to the fullest, no matter what may happen in the future.
What patients with disabilities need is to be able to decide just how much information they will receive about their care and, in order for them to do that, they need to have access to the same level of communication that non-disabled people can have with their doctors.
I don’t want to derail the conversation here, so I explained this issue in a post on my own blog: http://bintalshamsa.blogspot.com/2010/02/case-with-deaf-cancer-patient-also.html
Hi Bint, thanks so much for your comment. I did specifically mean the right to understand their condition, but at the same time, your larger point — that while everyone has the right to that information, not all actually want the information itself — was one that I hadn’t previously fully considered. So, I thank you for making it. And your post is great.
[...] Curvature: Deaf Woman Was Not Told Her Cancer Was Terminal I’ve heard a lot of heartbreaking and enraging stories in my lifetime, but this still manages to [...]