Archives for posts with tag: medical accountability

Rowan’s mom recently put out a request across Facebook to all of the healthcare practitioners and medical researchers who have linked to us on social media, but have yet to comment on Rowan’s death. She asked them one direct question about the discussion of discrimination in Rowan’s death versus the recent discussions of death related to racial discrimination by police officers  –“Why does the world pay attention to one, and not the other? What is the difference?”

This question stimulated an active and public conversation, but of those participating, only ONE was a medical professional who chose to reply publicly. The silence from those in the medical and bio-medical community has been and continues to be deafening.

It is important, especially for those of us who work in medicine, to speak up publicly so that others can hear YOUR arguments, MY arguments, OTHERS arguments and come to their own informed conclusions. This is not about winning a debate or convincing the other party that you are right and they are wrong. Without an open conversation that clearly shows what everyone involved really thinks, it is impossible for change to occur. Nothing healthy grows in the dark, and as we have said previously, the consequences of silence are profound.

Recently we were fortunate to have a healthcare professional share his opposing views with us privately. He expressed a common viewpoint in medicine today, as well as a common societal viewpoint about what constitutes discrimination. Viewpoints I believe are critically important to talk openly about.

Coming away from our conversation, it was clear to me that there is a widespread misunderstanding of what really defines discrimination in healthcare.

At the core of his opposing argument was the belief and acknowledgement that the modern practice of medicine is very generalized, and has flaws, but that everyone is treated equally.  That everyone should receive the best care possible and doesn’t is a very real but completely separate problem and does not relate to the existence of discrimination, be it blatant or subtle, within a flawed system.

The explicit flaw of this argument is based on the false assumption that there was no conscious or subconscious intent to do harm based on Rowan’s diagnosis of Williams Syndrome. Instead he was treated equally, as a good provider should do for everyone.

But, the reality is that Rowan needed to be treated as an individual who was different, but equal. Rowan required simple accommodations to keep him safe and alive because of his unique needs. This is true for all children with special needs. Drugs, procedures and even environments that are safe for typically developing children have been proven to be harmful and potentially fatal to children who are physiologically different as a result of a different genetic make-up. Rowan was different.. and therefore could not safely be treated the same as other children.

Instead, the doctors refused to acknowledge that Rowan had different needs, and denied basic accommodations for Rowan, which led to his death.

The best example to illustrate why that lack of accommodation was clearly discriminatory comes from our school system.  In order for a child with special needs to have the same educational opportunities, certain accommodations must be made.  Most children can be treated basically the same in the classroom and end up with a comparable education.  However, if a child with special needs is treated the same way and those accommodations are NOT provided, due either to overt prejudice or systematic failures, their quality of education is significantly lower. That is discrimination. This is not just my opinion. This definition of discrimination in education against those with special needs has been consistently upheld by the US Supreme Court, in cases such as Mills Vs Board of Education.

This is exactly why acknowledging that Rowan had WS, but going ahead and treating him the same as other children anyway, despite a year long battle from his parents demanding those accommodations, is discriminatory.

Rowan should have been valued just as highly and as equally, but should never have been treated the same as all other children. He should have been given specialized care and consideration, because his needs were very different from a typical child. This is the very essence of “Different, but Equal”.

One established definition of institutionalized discrimination is:

Discrimination that disproportionately affects specific groups or individuals, which has been incorporated into the structures, processes and procedures of organizations, either because of prejudice or because of failure to take into account the particular needs of different social groups”.

Rowan’s doctors failed to take into account his “particular needs” at nearly every step in his care, and children like Rowan are “disproportionately affected” by the negative consequences of “equal” treatment, regardless of their age.

So, for Rowan, and for many others like him, the argument that the modern practice of medicine is very generalized but that everyone is treated equally can in fact make an effective case that Rowan’s death was a consequence of discriminatory practices.

(Everything discussed in this post also only addresses one part of the discrimination in Rowan’s story, in which we believe that Rowan was also not treated as equal: this can be found discussed further here)

I know that many will still have opposing views after reading this. I hope you will share your arguments just as publicly as we will.  I invite you to do so below.

3 doctors Don't see, don't speak and don't hear anything

Rowan’s life and death tells a story, but this conversation is about much more than Rowan.  It is about all of the other wonderful children that are still here, and the families who love them with all their hearts.  Just as we will always love Rowan.

We didn’t have a choice.  We didn’t.  We simply didn’t.

Yes, in hindsight, we could have taken Rowan to a different town, or Australia.. where proper precautions would have been taken.  If we had known what we know now, we certainly would have put our entire family on that plane.

But I read stories like this one.  I read lots of them.  And I realize that this story isn’t about whether you agree with Cassandra, or her mother, or the doctors.

It’s a story about who is in charge.  And it’s not the parents:

http://www.economist.com/blogs/democracyinamerica/2015/01/medical-consent?fsrc=scn/tw/te/bl/ed/cassandrascatch22

And it wasn’t me.

I pleaded, I begged.  I made phone call after phone call.  Talked to doctor after doctor.

Do it without anesthesia.. “No”

Make him an in-patient.. “No”

Do more tests beforehand.. “No”

Find a better way.. “No”

Listen to me..NO!

“We are one of the best hospitals in the world.  We know what we are doing.”

“There is no other option.”

When they didn’t listen.. they didn’t just take away my son.  They took away my voice.  They took away me.

When people turn away, or don’t take action.. They don’t just turn away from my son.  They don’t just turn away from my loss.  They turn away from me.

And I matter.

“I’m not asking much… just your voice!” the sea witch told Ariel.  Is that really what it takes to live in the human world?

There is absolutely no relief when a bereaved parent can say I told you so.  It only causes more pain.

An article on alternative, and better, methods for heart imaging:

http://www.utsandiego.com/news/2015/mar/14/ct-scan-stress-test/

Outraged?  Visit How to Take Action

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