Tuesday, April 22, 2014

When doctors deny care because of costs

File this under "Because we don't have enough to worry about." Also: "Knowledge is power."

Doctors are now starting to weigh the cost of medical care as they make decisions about patients, reports Andrew Pollack in The New York Times. It cites a study that examined 30 sets of medical guidelines issued by physician specialty societies; seventeen of them took costs into account.

The article doesn't address special needs healthcare, but it's not hard to imagine how this could impact our kids. Sadly, there are already medical experts out there who think the lives of people with special needs are worth less than others, as we saw with little Amelia Rivera. She has Wolf-Hirschhorn syndrome and intellectual disabilities; a doctor at CHOP deemed her a bad candidate for a kidney transplant because, he noted, she was "mentally retarded." (Amelia got her transplant in July and is thriving, per this USA Today article.)

This is not to say that the wonderful neurologist, pediatrician, physiatrist or whatever specialist who cares for your child is necessarily going to start denying him tests, therapies, equipment or medicine. For that, we have insurance companies! (He, he.) But this is to say that we're living in a changing healthcare world and it's a good thing to have in the back of your head should you ever face a situation in which a medical expert is against giving your child a treatment.

As parents of kids with special needs, we know to ask—and ask and ask—questions about the care our kids receive. This is just yet one more to add to our arsenal.

Image: Flickr/Robert Huffstutter


  1. Your daughter Sabrina is thriving
    Amelia is existing, though her new kidney may be working well
    Mrs Rivera chose to donate her own kidney to her daughter and their medical insurance most likely covered all or most of the cost
    If Amelia survives, she will need another kidney in 10 to 12 years--whose kidney will Mrs Rivera give her then?
    Amelia will also need someone to provide all of her care forever--that is why she was considered a poor candidate for transplant
    Cadaver organs are in short supply--they should be intended for transplant situations where the most benefit can be realized, such as, the kidney transplant for the father of 4
    My brother had such a situation, after hemodialysis for 10 years, he got that transplant and is now practicing law full time again and coaching his twins' softball team
    You do see the difference, don't you--if he had not gotten that transplant, he would be either totally debilitated now or dead and either way his kids would not have had a father

    1. Kim Tan, I am glad your brother got a transplant, and is doing well. I realize I speak objectively—unlike you, I have never been in a situation in which a loved one needed a transplant. That said, I believe every life is worth saving and doctors do not have a right to play God. Perhaps a relative will step in when another kidney is required. Or perhaps Amelia will end up on a list. Either way, Amelia's time on earth is as valuable as that of other human beings.

    2. Ellen, that was my thought exactly. I don't believe that it's any person's (or panel's) place to determine the value of a person's life. We are all equal, because we are all human, regardless of what we do, or what abilities we have.

    3. I completely agree that every person's life is as valuable as anyone else's. Sadly, many people will disagree. I was once told that my son was 'not worth helping' because of his intellectual disability. And this was coming from a government worker in Canada who was supposed to be helping us get speech therapy for him!

    4. What you are asking for is discrimination in the decision system. So, if I needed an organ suddenly tomorrow, I shouldn't be allowed to get one because I'm single and don't have children? What about those whose children are over the age of 18? Should they also be banned from receiving organs because their kids are grown, and only those with small children at home deserve a transplant? Should very small children be banned because they are not productive members of society? What about the poor? Obviously, they aren't running the country or a Fortune 500 company, so should be ban them from getting organs, too?

      You are asking for people to think it's okay to discriminate, to only offer life saving therapies to what you personally consider an ideal candidate. What's next? No chemo for those with Stage 4 or Stage 5 cancer, because odds are too high that they won't survive and it uses up resources we could better spend on those with stage 1, 2, or 3 cancer? No insulin for the elderly, since they're old anyways and if we have more supply in comparison to the demand it would lower costs? Really, where would your insane and inane demands end?

      Frankly, you should be happy you live in the society you do live in and be grateful that Hitler didn't manage to implement the kind of changes you seem to want so desperately. I'm sorry your brother had issues getting a new kidney, but he did get one and he's home, safe and sound.

      Oh, and random thought, but the place to argue that disabled kids should be denied life saving treatment and instead are best off left to die so "more worthy" people get faster medical care? This is not that place. This is a disability rights blog. Wrong audience.

  2. I'm glad Amelia got her transplant! I do not know why people with disabilities are denied these things. Is it that they are not seen as useful contributors to society? They are certainly more useful than that doctor.

  3. I work in healthcare (physical therapist), and believe this is something the media is misinterpreting and blowing out of proportion (shocker, I know). It's also one of those battles we can't win- either people complain about unnecessary medical procedures and ridiculous costs or it is this- trying to cut costs. Cost is much more than financial, and in general patients should support the less costly route. An overall cheaper surgery generally means a less invasive surgery with faster recovery, less hospital time, etc. That is a good thing for everyone. A more expensive drug definitely does not mean a more effective drug, and generally cheaper drugs have been around much longer and have a better track record. Things like unnecessary imaging are a huge burder to health care and often times harm patients. A large percentage of people with no back pain could have an MRI and find a herniated disk or something else "majorly" wrong. So then someone comes in with back pain, demands an MRI, and ends up having surgery or other procedures based on an MRI finding that may not be causing their pain/problem at all!

    I do not think you would find many people in healthcare who would make a decision that would harm a patient just to save money, however, if you are deciding between two things and one has the cheaper price tag, that makes sense to choose it. For that reason, we should be aware of money and unnecessary spending. The sad thing is that if we don't worry about money in healthcare, it is going to be more vulnerable populations that pay down the road when we run out of money, and that includes people with disabilities who may receive public assistance with medical costs.

    In terms of the transplant, which is really a whole different issue, I strongly disagree that it is valuing one life over another, or thinking people with disabilities don't deserve organs. Many factors go into decisions on transplants, including other medical conditions and things such as do you have the social support for all the follow up care. Also, this is one case. It is unfair to make it seem that this is going to flow into all health care for those with disabilities.

  4. Thank you Ellen for the kind words regarding my brother
    I do not, however, lack objectivity
    My family is well aware my brother was given a rare and wonderful gift. We are grateful to the donor's family for their generosity in a tragic time (all we know is he was a healthy college student with a traumatic head injury.) His organs saved multiple lives, my brother's among them.
    Someday, when there is a kidney tree or a treasure chest filled with spare organs everyone will be able to get whatever they need, whenever they need it.
    You and I both know that is never going to be a reality but reading some of the blog comments one would think it has already happened.
    My brother may also need another kidney in the future. He does not feel he could accept another cadaver kidney when others are waiting.
    I am doing my best to stay healthy to be his next donor. Being a widow with 3 children, I was not previously considered a suitable candidate.
    Hopefully his kidney will last a long time while my children grow up.
    Not wishing for any person, adult or child, special or not, to suffer but when dealing with a scarce commodity, common sense and reason must prevail.
    More organ donors are needed. Check the box on the driver's license, make your wishes known to your significant others unless you envision the future as it is depicted in Kazuo Ishiguro's novel, Never Let Me Go

  5. I was a transplant coordinator many years ago
    Now I stay at home with my 12 year old daughter who is on CAPD
    I am the right audience to comment on this
    Anyone who was on hemodialysis for 10 years had some major issues getting a kidney and was definitely disabled too
    Cognitive impairment is taken into consideration when allocating organs, which is why my daughter is not a transplant candidate
    The child referenced in Ellen's post received a kidney from a first degree relative
    If you are a match, are willing and meet the other requirements you can do directed donor transplant---it is not without risk though
    Kim Tan did not comment inappropriately--Ellen opened the door--Ms Tan just walked through it


Thanks for sharing!

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