Systems Failures in Life and Death and Education

I went to my son’s High School 4 years ago when he was a freshman because he was struggling.  I sat down with his guidance counselor and his assigned Vice Principal to find help, where we had a wonderful conversation and it was determined, in their words, that “the system” was failing my son and that there is nothing we can do here.  A cop out.

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My Dad died this Sunday, September 29th at 8:15 am with my mother and myself at his side.  It was an amazing experience really, but one that brings so many emotions to process.  We all, my sister, brother and my mother sat vigil at his bedside for 5 days. It was long and more emotionally intense than I can even write about.

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Systems.  What tried to needle it’s way into ruining his peaceful death at home was systems.  Systems failure, how ironic I think as the government shuts down today. (But that is another whole blog!)  Let me explain.

It began when we had to actually fight to get my Dad OUT of the hospital because he had been there for 9 days and was only getting worse.  It was suspected he was in renal failure from fighting pneumonia and a staph infection leaving him septic on top of a failing heart, diabetes,  and COPD,  but the “system’s” directive is to cure.  Dialysis was their next thought.  4 hours a day hooked up to a machine when all other systems were failing.  And by that I mean his systems.  Failing heart, failing lungs, failing kidneys.  But we are all so afraid of failings…

He was dying.  We could see it.  And so we, his wife and kids, took him out of the hospital against their recommendation.  They were not happy with us and therefore did nothing to help us.  We got him into the car and my brother in law carried him into the house.  No help.

The “goal” when we left was that my Dad would continue on antibiotics at home to continue to fight the infection coursing through his veins.  He had a pic line inserted and the VNA was going to meet us at the house the next day to “teach” us how to care for this line and administer the antibiotics.  We agreed to this as it was the only way to get him out, playing within the system to get what he wanted.

And in that time my father stopped eating, drinking and ultimately peeing.  The hospital called the next morning  to let us know the test results were back and that he was, indeed,  in acute renal failure and that it was their recommendation that we bring him BACK to the hospital as this was a critical and urgent situation.

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I  had to fight hard against the system to continue down the path that my father wanted, which was to be at home.  This nurse was more interested in protecting the interest of the hospital that the interest of the patient.  I told her outright we were not going to sue, but that my Dad just wanted to be at home.  She persisted and finally asked if we would like to speak with the Doctor.  I said absolutely.

And he called and he listened.  It was shocking.  Instead of spewing hospital policy and protocol at me he listened to how my Dad was getting worse day after day in the hospital bed, how he had fallen in the bathroom there and nobody had ever known, how each day brought him diminishing care and a dirty room, about how we were all sick with sore throats and the likes from sitting hours and hours in that room with him, about how miserable he was, about how he was suffering, struggling for each breath day after day in that damned hospital bed.  And he heard me.

He asked if we would consider bringing my Dad up to his office and I told him we could not even move him in bed never mind getting him out of the house and so I almost jokingly said,   “But you could come here….?”   And he replied,  “I am thinking about it.  How does 2 o’clock sound?”  WOW!!

It was amazing.  I asked for his help and guidance in having a conversation with my Dad about his options because it was not a conversation that we could have with him as wife, son and daughters.  And he told my Dad that he was like a car driving on 1 tire because 3 of his major systems were failing.  My Dad looked him straight in the eye and said,  “Thank you for being honest.”  He chose hospice.

IF the hospital had anything to do with it he would still be there, probably hooked up to a dialysis machine and still suffering.  Systems…in place to protect who?

Systems…in our schools, all supposedly designed to create amazing intellects, college and career ready, but they are systems that are failing so many.  Ahhh…you see I was going somewhere with this.

And this is my cross to bear.  Every time a “system” is put into place it negates the experience of one human or another.  Why is it that we think others can design systems that will best fit every person?

I shook this doctors hand (whose name I shall not mention)  and thanked him profusely for coming out to the house.  He represents what used to be and what can still be right and fair and human in health care.  He was a young guy and even eluded to the fact that he was not sure if he might get into some kind of trouble for doing what he did, (thus not mentioning his name)  but in the end as he stood there washing his hands at my mother’s kitchen sink, I remarked that THIS is what health care should be.  He told me that this was his mission in life; to keep the patient and the needs of the patient at the forefront, systems be damned!

But look how hard we had to dig, claw and fight our way to find this.  I shudder to think what might have happened had he not been on call that day!

My son is now a senior and is doing really well this semester.  In asking him why he simply said, “I have great teachers.”  It is not the systems, it is the people IN the systems that make a difference.  Period.

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Thank you Dad for giving me words and while I will never be the writer you were…I will continue to write and always think of you and I will also continue to fight, as you did for what is just.   Be peaceful.  You are missed.

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21 thoughts on “Systems Failures in Life and Death and Education

  1. Your story was so beautifully written as always. I felt the power of your words as it brought tears to my eyes. I am so sorry for your loss and it had to have taken tremendous strength to buck the system. Good for you to standing up to THE SYSTEM.

  2. So, I am tearing up at my desk as my students take NECAPS and one of my students (now 2) are staring at me trying to figure out if they should be concerned…!

    I have REALLY been looking forward to this post because I know you, Tomasen- you would reflect and create meaning and connections in your world. So well written. I am pleased more than anything that you had this experience with this doctor and I love the parallel to the school system.

    Hoping to see you soon and give you a hug- Your story is moving and beautiful.

  3. Fantastic post. Sorry about the loss of your father. As for systems, they went a long time ago because of the people. As you stated, people experience through people not through systems. Unfortunately, many have lost values, morals and empathy. There is a lack of caring in today’s world. If only people could look back to history they would see how to make America great again, but all to often I hear,”Those people are old fashioned and out of date.”

    • Thank you. I hear you…and of course it is people who created the systems to begin with. I am not sure it is always a lack of caring as much as a lack of autonomy to be able to do what is right for kids and patients. Today, to do this, you often have to buck the system and caregivers are “typically” not rebel rousers. More and more I feel my job is to encourage social disobedience in order to just do what is right for kids. Your words, “old fashioned and out of date” are interesting ones as we used to value the knowledge of our elders.
      Thanks for your thoughtful response.
      Tomasen

  4. Tomasen,
    As always your words touch my heart and hearts of so many others! Thanks for sharing your story and your family’s story. I hope that the dr. continues to work for the patient first. My heart and prayers and friendship is with you always and I will miss your dad as he always had a wonderful smile and friendly nod for me whenever I saw him. Hugs. Tracy

    • Wow. Tears. Hospice is so wonderful and a way for a family to do it right. I can’t wait until you publish a children’s book?….. Plz? Hugs my friend and thinking of you!

      • Katie,
        Our hospice experience is yet another post. We, the family, were the hospice team with nurses showing up once a day to take his vital signs. I was disappointed with this aspect as well…no social worker, no advice or support for how to administer the morphine…but in the end he did have his wish to be at home.
        Thanks for reading and responding!
        T

  5. Tomasen,
    Such wisdom in your words. So sorry for all your dad and family endured. Please give my love to them all. I hope to see your sis in Wilmot soon.

    much love,
    Barbie

  6. This meant so much to me because I had a similar but perhaps worse experience with my mother in the hospital. I should never have allowed her to be taken there by the paramedics. Basically she ended up dying at least a year before her time because of lack of care in the hospital. I could have sued but only wished for better care. And although I am part of the fight to preserve public education, I too feel that it was the individual teachers that made a difference the few times that I felt positive about school.
    Thank you so much for your eloquence and openness. My deepest condolences.

    • Joan,
      So sorry to hear about your Mother. No matter what we have to stand up for what is just in both health care and education. They have become very similar on so many levels. Too big for their own britches.
      My best to you.
      Tomasen

  7. Tomasen, Your blog is beautifully written and so true! It’s important you shared your experience because many people will have to face the same situation in their own life. Big hugs. Katie

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