Running Out of Time

IMG_3304It was them.

They were on the schedule again. 

I let out a groan. Every time I see them I feel guilty, ashamed.

Please don’t come.

50% of the time they no show and yet I cannot bring myself to fire them as patients like I would with anyone else.

He was almost as big as his mother. He screamed at all hours of the day and night. He ate spoiled garbage. He ate his feces when he soiled himself. He was becoming more violent. He had the vocabulary of a two year old in a ten year old body.

Someone somewhere had labelled him autistic. He had health insurance but with that label no one wanted to help him. 

There was something else going on here, though. My gut told me that it was not simply autism. 

The neurologists said, “Not my problem! Send him to psychiatry.”

The psychiatrists said, “Autism is not my problem. Send him to MHMR.”

MHMR said, “We cannot see him. Try a developmental specialist…”

The developmental specialists refused to take him because he already had a diagnosis.

Meanwhile, the family was on their third apartment in a year because he could not be controlled. The neighbors always complained. 

Who could blame them?

The parents took him to the emergency room at the children’s hospital whenever things got really bad. The ER would send him to the inpatient psych unit. Meds would get tweaked but then none of the psychiatrists would see him as an outpatient. He would be sent home in a few days with no outside support. I struggled to manage his psych meds myself. I was all there was.

The cycle would start again. 

At one point his mother was told he needed to be turned over to a state home, that there was no more hope for him, nothing that could be done. 

You have to save yourself…

She refused.

I called every specialist I knew. I begged, pleaded, cajoled, and tried to call in favors. I even yelled at one. The wall never crumbled. They all stood their ground.

And then I gave up.

I gave up trying to help.

You have to save yourself…

But they still kept coming to see me, driving 45 minutes each way to my office. 

Then, after a few years of this, he started having seizures. 

Finally, the neurologists could no longer turn him away.

I thought about all of this that day as I prepared for his possible visit by again reading through the consult notes from the pediatric neurologist (the one I yelled at), the psychiatrist, the cardiologist, the nephrologist, and finally the geneticist…

He has a chromosomal abnormality.

A duplication. A syndrome. Now, finally, he has help. But it was too late for that family. The father lost his job. His mother cannot work because she has to be taking care of him. The parents separated, then divorced. Now the kiddo and his mother and siblings are all on welfare, Medicaid. 

It should not be this hard to get these kids help. I am angry with every one of those doctors who told me no. I hate them for making me feel like I had to give up and I hate them for making this boy and his family suffer for so long.

Mostly, though, I hate myself.

They did end up not showing for the appointment. I can hide my shame a bit longer…

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98 thoughts on “Running Out of Time

  1. A very frustrating part of primary care medicine, for sure. The PCP is left to manage a complicated patient who needs specialized help but can’t get it. The resultant anxiety for the doc in these cases is high, and the pain and frustration for the patient and family is immeasurable.

    Liked by 2 people

  2. You know Victo, you write so well, and with such feeling on these behind-the-scenes issues that I think so many of us realize occur but simply don’t have to face because we are the lucky ones. I tend not to comment on posts like these, not because I am any less touched, or any less outraged, or any less in awe of our medical system and its failings…I tend not to comment because I often cannot imagine how you get up each day and go to work knowing that you will face another difficult, if not impossible, situation with a patient or insurance company or fellow provider. I can honestly say that I would have thrown in the towel ages ago. While I know that mitigating circumstances, such as time and money invested, play a role in your moving forward everyday, I am truly in awe of your commitment to your patients and I feel humbled to know you-even though only virtually.

    Liked by 3 people

  3. At least you haven’t fired the patient. Sounds like you’re willing to do what you can, whatever that is. My wife is a beautician, and has occasionally had clients bring their autistic children in for haircuts. No other beauticians or barbers would cut their hair. But my wife found a way to work with them, and get them to sit still long enough for a head trim. It just requires a little extra time and patience.

    Liked by 3 people

  4. So sad and so very frustrating for you and his parents. This is one story but I’m sure you have too many more, as do others in your profession. The system is obviously broke. I just don’t know if people are trying to fix it or if they don’t know how. Thank you for caring as you do.

    Liked by 1 person

    • I don’t know that anyone knows how. Parents of developmentally delayed kids have to battle every day. Sometimes you get those parents who don’t feel empowered to do that, like these people, and you have to do it for them as much as you can.

      Liked by 1 person

  5. Wow! I was so moved by you sharing this story. Why is our medical community so broken? Is it all about money? I can only imagine your frustration and anger. I feel it too. This problem belongs to all of us. I wish I knew how to fix it. ❀

    Liked by 1 person

  6. I’m at a loss to say anything that the others haven’t said. Unfortunately too many doctors become so depressed by a multitude of factors that they take the final step out of the situation. Deb said it all. Your posts always make me stop and think. I believe that you do a lot of good in your blog as well as in your consulting room.

    Liked by 1 person

  7. “It should not be so hard to get these kiddos help.” Amen. My friend has a developmentally disabled son, now 30. I know she turned over Heaven and hell (with his dad’s help, though mom and dad are divorced) and he’s truly one of the most awe-inspiring human beings I ever expect to know but the prelude to that was years of fear and hell. So many times I’ve heard her say, “It shouldn’t have been so hard to get Mark help.” Good for you.

    Liked by 1 person

  8. My *like* of this post is only recognition of your writing skills, your empathy and sensitivity. There really is nothing to *like* about this situation.

    Would he have received help sooner and specialists more willing to accept the assignment if his symptoms had been less disruptive and he had been a *cute* little pixie of a child?

    Liked by 1 person

  9. You have absolutely no reason to hate yourself – you did the best you could and a little bit more. Who could have known it was such an unusual genetic problem – not even the best specialist. These sort of problems happen all the time even in countries with a universal health system. When I worked in mental health I would finish on Friday afternoon not knowing if the person I spoke to would commit suicide but I did my best.

    Liked by 2 people

  10. The sad revolving-door of the health-industry machine…and yes, the parents bear some blame. There are no easy answers, and it’s a shame that a family was destroyed. Genetic abnormalities are usually easy to see – physiology is a valid, valuable tool in biology and medicine.

    I certainly feel and relate to your frustration…and you shouldn’t beat yourself up. You did what you could, and far more than many others.
    πŸ™‚

    Liked by 1 person

  11. .This is a subject near and dear to me. The system that deals with developmentally disabled people is as screwed up as can be. It IS all about insurance/ money. Kids need to get a diagnosis in place before they become 21. After that, support is nearly impossible. I worked with and taught kids who were behaviorally challenged but were never diagnosed with anything except ADHD and ED. But what an eye opener it was when I worked for an agency that works solely with DD adults. Those parents who were able to acquire diagnosis for their children before 21 got placements in group homes, tons of services and support. We had 27 group homes, four day programs and a lot of outreach for parents and families including Social Work. Parents who had children who were out of school but not yet an adult came through our Transitions program. They were great programs. But then as I learned more, it became clear that there is a lot of jumping through hoops for these parents to get what they need. Now, our state has decided to cut back hugely on these programs. They are making families take care of their own and services are provided in the family home. Cheaper and β€œit keeps the family together.” I work there for five years and worked closely with some families. I saw how exhausting it is trying to advocate for their children to get them the most β€œnormal” life they could have. The families often splinter especially if there are non-DD children in the family. In my own family, my husband’s nephew finally got a diagnosis at the age of 20 and Β½. His father did not want his child to have a label growing up so they refused any services for him. After the father died, I worked to help get him services. We were all set to get him into our work program and one of our most independent homes. He is able to drive a car and can do fantasy football, but he is on the autism spectrum. However, my stupid sister-in-law, was too f***in lazy to complete the paperwork in time so he β€œaged out.” He now spends his days in his room, by himself and gets more socially disabled. Services for this population have been drastically cut back because the government money has dried up. And just like the mentally challenged folks who were released out into the public to try and assimilate, these folks are adding to the homeless population. Those parents who fight for their children are amazing and are heroes in my eyes. The systems has failed them. (sorry for the rant)

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  12. Aww, I’m so sad for you. Don’t be ashamed. I can tell you personally from having 2 autistic kids, one of who was a VERY hard child, you should NOT feel bad for wishing he would be a no show. It’s not easy to deal with all the things some autistic kids do. (And while in the end, he was not autistic, it sure sounded like it a lot of the way through as I read.)

    Liked by 1 person

      • Yes, but again, as the mom of a kid who was misdiagnosed several times before getting the proper “label”… better late than never. I was just so relieved when I learned my son was autistic and it “fit” with everything I’d observed, that I never once lamented over the years I was told he had other things. I’m sure they appreciate you a lot more than you realize.

        Liked by 1 person

  13. I just want to echo what many have said. You’ve done your best, probably more than most would do. You are not superwoman, but you are a super woman. We can’t save them all, no matter how hard we try. I know that sucks. But no reason to hate yourself. Know that you’ve done your best.

    Liked by 1 person

  14. Your post outlines my mother’s plight in the early 1960s, although not as severe. You can imagine how that the medical community was even more clueless then than it is now. My mother opted to save the family and place my brother in a large mental institution (Willowbrook, Staten Island, NY State) with more than 6,000 patients, after looking everywhere for help. [Look up Willowbrook on the internet… it turned out to be a terrible place.] It is a devilish situation: opting to ‘save’ the child or the family.
    Thank you for your post.
    j

    Liked by 1 person

    • I have been following your brother’s bits and pieces as you have been posting them. I cannot imagine how hard that would have been for her, for him, and for you and the rest of the family. There were no resources at all then. She made the best choice she could, your mom, and I respect her for it. Thanks for sharing him with the rest of us. πŸ™‚

      Liked by 1 person

      • Thank you. There is so many issues to the whole Willowbrook story that affected parents. For example there was one ward that experimented on patients by purposely infecting them with hepatitis; parents had to agree to this or be denied admission to Willowbrook, whose other wards had no beds. [by the way, if you search on Willowbrook and atrocities, you will see the story; it is equated to the Tuskegee experiments.]
        Thank you for your response and attention.
        best,
        Jack

        Liked by 1 person

  15. I hear this story all the time from teachers too. There are so many forms for the already overworked teacher to fill out, and they have to be exactly correct, and then no one wants to take responsibility to help. No one wants the child in their class, or their school, because they are difficult. The families are left adrift. And in the end we all lose. (K)

    Liked by 1 person

  16. I’ve known for a long time that a physician’s job is very difficult and stressful. But reading your blog has shown me that it it much more difficult than I’d imagined.

    I’ve seen this sort of human shuffling in social service and in law too. In those kind of environments the easiest way to avoid dealing with a difficult problem is to determine that it is someone else’s problem–not in my department/practice group/specialty, etc. It’s sad to think about the preventable damage that happens.

    Liked by 1 person

  17. My compliments for your storytelling ability that painted that connected to your readers. In a meaningful you shared the conflict and characters so that the point of your story delivered your message in a memorable gift to your readers. Well done

    Liked by 1 person

  18. Such a sad and frustrating story. I wish we were wizards with all the answers and energy and magic of the movies. There are thousands of stories out there, tens of thousands of people needing help, hopeless and without answers. We have to trust that each day we are making small differences, even when we can’t save them all. Be tender with yourself.

    Liked by 1 person

  19. It sounds like you did the best you could! How can you endlessly advocate for a patient when no one else will accept your efforts? If anyone should feel guilt and shame, it should be the people who refused to see him and now realize that they were wrong. You were right and you did the best you can!

    Liked by 1 person

  20. There are so many families that are just thrown away. People forget it could happen to anyone. It is just the luck of the draw. What can we do? So sorry to have been out of touch for a while. I’ve gotten so far behind on my reading.

    Liked by 1 person

  21. (Signing back in)
    Don’t hate yourself. you’re a good doctor. wanna know why?
    Two reasons:
    a) you care. Apparently.
    b) you don’t label. Most doctors have their white coat pockets full of labels. 10-15 mins for a diagnostic? Pull out a label. And stick to it. Doesn’t matter if the Doc is wrong. The label is always right.
    A shame but true.
    On her rural assignment my daughter thought an indigenous patient might have porphyrea (remember House tried to stick porhyrea in one out of three episodes). Nobody believed her. No fancy research facilities. She did the simplest test. and Bingo. That way she could send the patient to the capital and get proper care.
    So, don’t hate yourself. Just keep caring.
    (Proud to “know” you, Doc)
    Brian

    Liked by 1 person

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