Recently, Diane Coleman wrote about new proposals to increase the pool of donor organs, and that have particularly disturbing ramifications in terms of the care and treatment of newly disabled individuals. We already know that organ transplant teams are more than willing to obtain organs from individuals with long-term disabilities, as highlighted by the case of Ruben Navarro. Even though a jury found no crime was committed in his death, the chaos and disregard for medical protocol associated with his final hours should embarrass any medical facility.
Navarro was a young man with cognitive disabilities. At the time the story broke, I had one observation I shared on this blog that’s very relevant in the immediate present:
Ruben Navarro would probably have been rejected out of hand as eligible for being a recipient if he had needed a transplant. It makes the circus of horrors accompanying the rush to make him a donor all the more appalling.
No one knows how many individuals with cognitive disabilities experience discrimination – even fatal discrimination – in the US medical system. But every once in awhile, a disturbing example comes to light. When we’re lucky, it even comes to light in time for us to do something about it.
Rachel Cohen-Rottenberg was the first of several people on Facebook to call this to my attention. Right now, the top article on wolfhirschhorn.org (a website devoted to families of individuals with Wolf-Hirschhorn syndrome) is titled Brick Walls.
The writer has a daughter, Amelia, with Wolf-Hirschhorn and the family has known for some time that Amilia’s kidneys are failing and she will need a transplant. They’ve had good medical support at Children’s Hospital of Philadelphia (CHOP) up to this point. But things take a very bad and ugly turn at the meeting with the transplant team. The story itself is long, and people should read it. The excerpt below appears near the end of the article:
He pauses as if he is choosing his words carefully. “I have been warned about you. About how involved you and your famliy are with Amelia.”
The devil himself could not have produced a more evil laugh. “Ha! Warned! That is funny! You have no idea…”
I am beginning to realize I want this over with so I can move onto the next person who will help me with the transplant. So I say the words and ask the questions I have been avoiding.
“So you mean to tell me that as a doctor, you are not recommending the transplant, and when her kidneys fail in six months to a year, you want me to let her die because she is mentally retarded? There is no other medical reason for her not to have this transplant other than she is MENTALLY RETARDED!”
“Yes. This is hard for me, you know.”
My eyes burn through his soul as if I could set him on fire right there. “Ok, so now what? This is not acceptable to me. Who do I talk to next?”
“I will take this back to the team. We meet once a month. I will tell them I do not recommend Amelia for a transplant because she is mentally retarded and we will vote.”
“And then who do I see?”
“Well, you can then take it the ethics committee but as a team we have the final say. Feel free to go somewhere else. But it won’t be done here.”
They both get up and leave the room.
A couple more pieces of information are in order here. First, the family plans on finding a living donor for Amelia. They plan to have themselves tested for a tissue match and a number of people in their large family have also indicated willingness to be tested for compatibility. Also, although I wish I could say the doctor was breaking some kind of law in this instance, physicians are apparently given a lot of latitude when it comes to exercising anti-disability bigotry in the transplant arena.
So what can we do?
First, go and check out “Who deserves a kidney? CHOP says no kidney for Amelia” on the site titled “Kidneys and Eyes.” The woman who writes the blog has two children with disabilities who have both received kidney transplants. She provides several useful pieces of information in terms of taking some kind of action:
There’s this link to a petition demanding that the transplant team at CHOP approve the kidney transplant that Amelia needs.
This same wonderful writer provided the following in regard to CHOP (link and excerpt from patient rights and contact info for CHOP):
CHOP PAtient’s Bill of Rights
#2 on CHOP Patient’s Bill of Rights
Receive care, treatment and services regardless of race, color, age, sex, national origin, religion, handicap, disability, sexual orientation, who pays for care or your ability to pay.
File a suggestion, complaint, or grievance by discussing with the clinic, unit, or department manager or other supervisory person, or by contacting The Children’s Hospital of Philadelphia’s Family Relations Office by phone at 267-426-6983 (within the Hospital dial ext. 6-6983), by e-mail at FamilyRelations@email.chop.edu, by fax at 267-426-6990, or by mail addressed to the Family Relations Office, The Children’s Hospital of Philadelphia, 34th Street and Civic Center Boulevard, Philadelphia, PA 19104.
PLEASE CIRCULATE WIDELY. AT THIS TIME, DISABILITY ADVOCATES IN PHILADELPHIA COULD BE VERY HELPFUL IN PRESSURING THE HOSPITAL TO REVERSE COURSE. –Stephen Drake
Oh, good, I was hoping you would cover this! As always you are on the ball. Good job. Let’s light it up people. This is unacceptable.
This is just horrifying. I just can’t believe the hospital that treats my disabled son would be so… callous.
Heartless.
Thank you for your wonderful post.
I just now discovered this was happening via Dave Hingsburger’s blog, which linked to the post “Brick Wall” in which the mother shares their story.
I went to CHOP’s website and submitted the following email to them:
Please provide Amelia (http://www.wolfhirschhorn.org/2012/01/amelia/brick-walls/) with a transplant. Speaking as a person with disabilities, I can tell you that you are NOT QUALIFIED to judge her quality of life. Doctors should not make insulting assumptions about how you THINK those of us with disabilities experience our quality of life. You only ever see people with disabilities when they are sick and need your care. You don’t watch us live and, YES, enjoy our lives on a day to day basis when we are not in your or any other hospital. You simply are not around when we are experiencing our ACTUAL “quality of life,” which happens to be as excellent as ANY OTHER person’s quality of life, thank you very much. A person does not have lower quality of life just because YOU think our bodies or our brains are in some way deficient. I have disabilities in both various parts of my body and also in my brain so I know what I’m talking about. YOU DON’T. So please stop judging what you don’t actually know anything about.
Amelia is a little girl who deserves a transplant and should not be discriminated against just because she happens to have intellectual disabilities.
I join her parents in solidarity in demanding that CHOP reverse it’s decision and give Amelia a transplant. I also join all people with disabilities everywhere, and our loved ones, in demanding that CHOP 1. Educate itself about the REAL LIVES of REAL PEOPLE with disabilities and our REAL QUALITY OF LIFE, and, 2. Conduct a very serious overhaul of all your discriminatory policies against people with disabilities.
Thank you for your time and consideration of this important issue.
Andrea Shettle, MSW, MA
If you visit the CHOP website at http://www.chop.edu/contact-us/index.html you will see a list of links for different departments that you can contact via email. I sent my email via the link for “General Comments and Requests.”
Again and again we see the perogative of elites– medical personel/administrators using aggression to control people who are evaluated on a perceived cost basis. Beware of the myth of the sancrosanct doctor -patient relationship. All we need now is a fireplace, arm chairs and the imaged of a bow tied savior to lull us to sleep when it realy matters. The docor patient “relationship” has been used expertly to create a privacy shield to convince women to abort their children and now all of us a left to navigate the new medicine with its new math where we are always forced to present benefit rather than symptoms. To whom? Likely to a doctor who is trained to use affirmation techniques, who is seeking to infantalize us so as to make us co-operative when we would rather not. The individual is always the last to know that the strong have been coercing him more than he knew. -Erin Myers
The hospital can probably be sued for deceptive advertising if it claims not to discriminate and then does discriminate. This also looks like a violation of the Americans with Disabilities Act.
the discrimination against the developmently disabled is rampant.
However, some of these people have multiple problems, and these alone might make them high risk. e.g. swallowing problems that make them high risk for pneumonia on rejection medicines, behavior problems that make dialysis impossible, chronic poor nutrition, or medical problems associated with the syndrome (e.g. chronic hepatitis or heart disease in Down’s syndrome, taking multiple seizure medicines).
Also, like the very elderly, sometimes their bodies are oversensitive to medicine, whether it be for pain or chemotherapy, where the dosage must be decreased.
I would think a kidney transplant would be better than dialysis in this case, but I don’t know if medical comorbidity or prejudice were behind the rejection.
It is horrible, and no doubt the hospital will speedily correct it, since this Dr violated the hospital’s policy…if what actually happened is what the mother reported. The mother admits she didn’t hear part of what the Dr said. She may not have heard anything he actually said. (She also felt called upon to make a veiled racial slur, but distraught people sometimes say things they would never ‘really’ say.)
*Furthermore, CHOP does perform transplants on MR children. Repeat: CHOP has, in the very recent past, performed transplants on MR children. End of sentence full stop.*
Anyone who’s ever worked in healthcare, counseling, or social work for any length of time has a horror story about the patient/client to whom they carefully, slowly, patiently explained a situation, only to be called to account for saying the exact OPPOSITE of what they actually said.
I don’t always agree w/ NDY, but since I began reading it I have learned the WA DwD law lacks safeguards I had assumed it possessed. Anyhow, people who only read blogs they agree with seldom learn anything; they just get their existing prejudices reinforced. I do wonder what NDY, a blog I respect, will do if it eventually turns out the Dr explained to the parents that this child’s previous open-heart surgeries and current seizures mean she’ll never survive a transplant.
No, I’m not giving my name; too many unstable people are screaming about this situation.
Thanks so much for sharing my post about Amelia and for your kind words.
I have yet to see a situation generate more blogs and comments since I’ve been blogging. The CHOP facebook page has been inundated with comments from advocates. Maybe Amelia will be a modern day Rosa Parks?
To the second Anonymous:
I also caught the reference to the nationality of the doctor. Interestingly, one journal article I located on this topic was a study done in *Brazil*, where individuals with intellectual disabilities have been getting transplants. The article concludes that the outcomes are comparable to those of otherwise nondisabled (aside from the need of a new organ) people.
As to your other question regarding what NDY will do if the story reveals something more complicated or different – we’ll report it. Before this blog started, there was a case involving a very young child with disabilities who had *apparently* been turned down for a heart transplant. As the situation evolved, the story was somewhat different – the transplant team felt that the boy could stay on medication for at least the next year or two. And that the older he got, the better chance of finding a suitable donor heart.
And in the case of the death of Ruben Navarro, we reported the physician’s acquittal. We had questions about things not mentioned at trial and some other issues, but didn’t challenge the jury’s judgment.
We’ll follow the story where it goes.
As someone who has worked in the kidney community for some time, I would like to point out something no one else has thus far on this subject: people in need of a kidney transplant have the option of dialysis. Dialysis does not equal death.
I don’t know all the details of this situation; however, there is no reason this child could not receive some form of dialysis until such time as she would be approved for transplant elsewhere.
People live long and full lives on dialysis; I personally know of people who have been doing so for 30+ years. I would love to see people get away from saying “no kidney transplant = death”…it simply isn’t true.
For me, the name Ruben Navarro still evokes pain, as both a person who is disabled and as a mother. About this article, I suspect that I am not the only one who had trouble signing the petition. My cognitive difficulties of ME/CFS give me no-longer-new and ongoing empathy with people with mental disabilities of all kinds.
That is just sickening!!! Talk about Eugenics in the medical field, they are all a bunch of assholes!!!
My mom had contracted a very treatable skin infection.It went into sepsis shock 5 months later. the medical staff felt that she had no quality of life because of her age. They also made up a diagnosis of end stages of dementia. So as far as the doctors were concerned she was no good because of this made up disability and her age. She was then denied proper treatment and all her rights were taken from her as the druggings and no treatment continued. The reason for this false dementia diagnosis is when she was recovering from a surgery that was to help her memory and doing well and getting her memory back to normal, she was given some very bad sedatives in a recovering facility that put her into comas. This was even after her telling the staff that she did not want to be drugged and me also telling the staff that these were bad for her health and should not take them. Since the first druggings it snowballed into continue druggings and comas. Sometimes back to back. Ever since this surgery and the continued druggings she had been in and out of the hospital because of all the overdose complications and the hospital skin infection that was never treated. She was even given a medicine that I found out later will make the skin infection worse. In spite of this we did run in to one good doctor and staff who did decide to treat her infection 5 months later after it went sepsis shock.The treatment was only for 2 days which got her out of the sepsis shock and cleared her skin up for the first time in 5 months. the treatment should have continued for 14 days to 1 year. Since the coma she was in the last time was the worst one yet she was again labeled as not only with dementia and no quality of life, but terminal from the dementia. these labels of terminal and no quality of life seems to be the code word for some kind of euthanasia or murder if at all possible for the staff.So they not only did not use the meds that she needed they treated her with one drug only.This drug was not only not going to treat her it was going to kill her because this drug and the skin infection that she had were a very deadly poison for her.It was about as powerful as using a knife or a bullet to her head. Either method would work to kill her on someone with this kind of infection and the medicine that was poisonous to her. So my moms life was literally taken away from her and us because of age description and a made up dementia/disability discrimination as well. It did not matter that she survived all the drug overdosings or how healthy she was and how well she took care of health. The only thing that was important here was discrimination Apparently in the medical field it is very acceptable to discriminate for age or disability or even a made up disability as in my mom’s case.The medical staff can kill people on purpose if they feel like they should. It is really sad how some americans believe in euthanasia. My mom’s case and so many like it is a good reason for strict laws against euthanasia or murder as what happened to my mom.This law should be practiced and in forced instead of trying to make euthanasia legal. If this were legal even more disaster will happen by making it easier for doctors to euthanize for whatever reason. I do not understand how not only do these psychopath medical staff lack morals, a heart and conscience but it is so scary that they are also allowed to get away with this legally and continue to walk the streets as if everything is fine.It is time to fight back and not allow this to happen anymore.
Please read update on Amelia on http://www.wolfhirschhorn.org under kidney chronicles part three.