Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.

He has since died, and I took on the cause of making cancer care more transparent for everybody.

Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."

I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.

I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."

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Thursday, March 19, 2009

Patient Shifting

Recently, in my political endeavors, I've been hearing a lot about, and I've spoken a lot about, cost shifting.
Cost shifting is what is happening with uncompensated care in NH.
Medicaid will not reimburse complete care costs. Those costs still exists. The money does not magically go away. Nonreimbursed costs go towards the hospital or on patient bills.
A scary consequence of this cost shifting is that hospitals can not afford to provide care, resulting in what I call "patient shifting."
Children's Hospital in Boston has done this by refusing to accept NH Medicaid. Patients with this insurance are not accepted. The patients must still be treated, and are often treated at Children's Hospital at Dartmouth (ChaD).
The cost shift due to medicaid reimbursement budget cuts are projected to cost Chad $10 million in the next two years. While reimbursement is going down, the number of patients are going up.
Eventually, this could bankrupt ChaD. They may begin to refuse NH Medicaid as well.
They also may begin to refer cases they once treated to emergency department or outside satellite clinics due to patient overload.
Even being the best patients and patient advocates could die due to inability to access care if we continue down the path we're going.
I've seen it all ready.
Even if you follow the steps I've written below to gain access to your provider quickly and efficiently, You still may encounter problems.
Everybody is human in these encounters. It is nice to think providers are impervious to sleep deprivation or distractions like screaming children. Patients need to think this to feel safe.
I know their human. I don’t like it. Ignorance is bliss.
If you’re a patient, listen to me carefully, your doctor, nurse practitioner, nurses, techs, aids, secretary and anyone you encounter in your attempt to access treatment is a demi-God. They are superheroes. They possess powers to make you feel better. You can trust them with your lives.
Good, now that you’ve taken that all to heart, sleep easier at night.
If they do accidently show their humanity, we as patients, ned to continue to fight like hell.
If you do feel unsafe, If you do feel like you are in imminent danger of losing your eyesight, perforating your bowel, going into septic shock, fight like your life depends on it.
I want the people caring for me to like me.
I want to live more.
As a nurse, I thought because I had experience, because I had seen travesties, because I had immersed myself in different cultures, because I had cared for people of all different ages and in all different stages of dying, I understood what they were experiencing.
Since I thought I understood, since I was working so hard to help them, I felt entitled to comment and judge their reactions.
I didn’t know anything.
When I talked about dying being unable to access care, I thought about the single mothers, the high school drop outs, the blue collar workers, all who just didn’t understand the system.
I did not know that dying trying to access care could happen by calling providers and being told there were no appointments available.
I did not know that such a thing as “patient shifting” could exist.
I heard about it on documentaries.
It was an urban legend.
It was a terrible story perpetrated by someone who knows someone who has a cousin.
It is very real.
People who are not forceful and adamant, people who are sick and too weak to fight, people who are scared to death and are desperately seeking care like a person drowning would struggle for air, die.
I’ve called one person to be referred to another then to be referred to another only to be told I was not calling the right clinic.
While I’m frantically trying to get treated, I’m simultaneously getting sicker. I start to feel weaker. I start to wonder if the fight is worth it.
I start to think I should listen to my body. Maybe I should go home and go to sleep. My body wants to rest.
I know my symptoms could represent imminent danger. I know I could die if I go untreated, but if nobody wants to treat me, if I’m in the least bit ambivalent about carrying on fighting my illness, I may just listen to my body.
I may just agree with what I’m hearing: that the problem is not imminent, that it is not a symptom of my treatment, that the hospitals are too busy and overburdened to treat me.
Maybe I should go home and wait out the disease.
Maybe I should just go home lay down and sleep.
Maybe it is time I die since I am so tired, so weak, and having trouble thinking. The whole equation is adding up to equal that I should just die quietly.
I am clearly a burden. I am a burden on my family. I am a burden on my friends. I am definitely a burden on the system.
This feeling becomes stronger every time I experience a symptom that makes me fear for my life and encounter obstacle after obstacle seeking care.
People like me die trying to access care. Critical care nurses, Bronx boot camp trained to be tough and advocate for other patients die advocating for their own care if they are ineffective.
I know they do. I’ve come too close too many times.


Dani said...

I know how you feel, and I just want you to know that you are NEVER EVER a burden on your friends..... I hope you are feeling better, I'll talk to you later

Brynn said...

I can't begin to imagine that feeling. You do need to know that for this friend you are never a burden! You know that I will do anything in my power to help you in any way you need! :)
Feel better!