"Suffering the Slings and Arrows of Outrageous Fortune"

Justina and her mom, Linda, at a recent visit.

It is no secret that Justina Pelletier’s sad story is being taken as a very real threat by the chronically ill – particularly those chronically ill with rare and misunderstood diseases. Mito is one; EDS is another among so many more conditions that medicine just does not understand. It is ridiculous and appalling that a doctor in an ER can say, ‘I just don’t believe (Fill in the blank) is real and even if it was, you don’t have it.’, overturning or at least questioning the diagnosis of a genuine expert on (Fill in the blank).

Yet it happens ALL THE TIME.

Justina’s plight simply reinforces what we already know of medicine. And what we already know is not good.

Physicians are supposed to ‘First, do no harm‘. Setting aside Justina’s specific situation (we KNOW they have done enormous harm to her and I don’t need to make that case in this post), I would argue that great harm has been done beyond Justina and her family: enormous and, perhaps irreparable, harm has been done to the precious and essential  trust and faith patients have in their doctors.

Sadly, the people who are the most vulnerable, the most medically needy and most need to trust the medical community are the very people who will be hit the hardest by the betrayal of Justina’s Boston Children’s doctors. How can any parent of an ill child walk into a hospital and trust the professionals they encounter? How can the fear of losing their child to a doctor’s ego or financial agenda not be a poison in the minds of every parent when they walk into a ER?

Even in the year 2014, in an era of amazing medical  discoveries, people are still suspicious of doctors and medicine in general. And now, they have been given a very good reason to be suspicious. There will be people who hear about Justina and refuse to take their child or themselves or their spouse or their mom to a physician even when it is absolutely needed.

I predict that someone, probably more than one someone, will die – directly or indirectly – because of the fear engendered by this case. The good doctors are going to have to work twice as hard to earn trust and parents are going to be rightfully suspicious for a long time to come. That is directly on the heads of the people who are incarcerated Justina.

Beyond that, the harm done to the mental health field is dangerous – as if the stigma of mental illness isn’t already enough to dissuade people from seeking treatment. I have had my eyes opened WIDE to the abuses and corruption in the field, yet, I still see that it is needed. There are people who actually have treatable illnesses – who need the treatments and medications that are given by knowledgeable professionals.

Remember Sidney Freedman, from M*A*S*H? My favorite psychiatrist, he was always good from some down-to-earth advice and he never acted like he was God.

And there are some good ones who are not succumbing to the lure of payoffs and what are essentially bribes, who are intellectually honest about the foibles of their profession.

But, the public, who is even more suspicious of psychiatrists than they are of physicians, won’t notice the good ones, will rightly see the bad ones as witch doctors who are lining their pockets through the torture of the innocent, and will eschew any and all forms of mental health treatment.

In my opinion, this is a critical crossroads for the chronically ill. Not only are they going to be far more suspicious of their doctors – from the lowly GP to the exalted specialist, but any suggestion of seeing a mental health professional will be seen as a threat.

Let’s be honest, most people living with chronic illness could use a good therapist. It is hard and stressful and unpleasant to live with chronic illness; depression and anxiety are part of the package. If you are are living with a chronic condition, you are not sick because you are depressed, you are depressed BECAUSE you are sick! If ever there were people who could benefit from appropriate mental health treatment, it is the chronically ill.  A good therapist and perhaps anti-depressants and cognitive behavior training could come in pretty handy…

Yet, I am less inclined to trust a therapist or psychologist now than I was before, and that, frankly, wasn’t much. Without a doubt, I am not the only with that opinion. This poses a real risk for the chronically ill and, again, they are the ones who will pay the price of the Pelletier case for a long time to come.

We know the doctors and institutions involved in Justina’s case and others like it are benefiting in almost every way – financially, professionally and personally. We know the flow of money is absolutely obscene and that ‘wards of the state’ are used as commodities at Boston Children’s Hospital: resources to use up and send home when there is no more benefit to be gained from them – either in a coffin or emotionally broken.

We know who is being harmed by this: the vulnerable, the medically needy, the hurting and the weak. The ones who need the best medical care will be less likely to seek it and will suffer for the fear engendered by Justina’s case.

So, the weak and the ill are damaged, scarred and victimized while the dishonest medical professionals rake in the money.

What ever happened to ‘do no harm’?

Is the harm done to the chronically ill worth the financial gain they accrue? Is the damage to the medical profession in general worth the money lining their pockets? Is the destruction of the precious doctor-patient relationship worth the so called good they think they do?

Sadly, the evidence indicates they absolutely think it is worth it. I just don’t know how they live with themselves.

image courtesy of justinatkins.com


Comments on: "The Impact of #FreeJustina on the Chronically Ill" (2)

  1. Great write up . I did one myself . 30 years ago I was Justina Pelletier , childrens hospital tried to do that with my family and it nearly cost me my life . I sent a copy of my write up to every newspaper in massachusetts along with a select few bigger papers on the east coast including The New York Times . Only the cape cod times picked it up , and by ‘picked it up’ I mean completely butchered my writing complete with grammar and punctuation errors. SMH. So I decided to post it on my blog . It amazes me that it has been allowed to go this far for this long .

    • My sincere apologies for not replying sooner! Sometimes the comments pile up and I just don’t get to them in a timely fashion!

      Thanks so much for commenting – it is crazy that this is such a common story, it is happening everywhere, families are being torn apart, people are hurting and no one seems to care. I am so sorry that your write up that actually got to print was butchered – typical, isn’t it? I am glad you blog about it. Definitely a great way to get the story out there!

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