Category

end of life

Baby Ryan and his untimely death

By | end of life, Good Works | 3 Comments

When #NursesUnite, beautiful things happen.

In March I received a message from a #ShowMeYourStethoscope member about a very sick little boy. Ryan LaSource had been fighting cancer for most of his young life. At 3 years old he had leukemia with 3 relapses. (Four total)  He developed Graft vs Host. His skin was so painful that he could only wear bamboo cloth.

Naturally, the thought of this baby being in pain for the lack of a few (somewhat expensive) pieces of clothing made me ill. I wrote a blog and included a wish list. SMYS read this blog ( http://wp.me/p79tAf-Qk ) and jumped in to help. Ryan soon had the clothes he needed.

Ryan died todaybabyryan

However, Ryan died in his comfortable clothes, which were purchased with your love. Thank you for making this baby’s last months more comfortable. Thank you for being part of the SMYS community.

We will send flowers from you to Ryan’s parents, who have begun a long,dark journey without him. I am well-acquainted with this path, myself and hoped that they would never join me on it.

babyryan2

Love,

 

Janie

 

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Why I insist on peer-reviewed research and EBP instead of anecdotal evidence when we debate. A personal story.

By | Advocacy, end of life, Nursing | 6 Comments

Once upon a time, I was a brand new, wet behind the ears nurse working in SICU. I got an admission that was so far off of our 65–80 year old renal failure, or septic, or s/p some surgery normal patient that I was in complete shock.  I met a woman who was just my age, and assigned to me as a patient that night. She had breast cancer.

She had breast cancer that had actually eaten through her breast. There it was; this horrific grayish-black tumor sticking out of her breast. It smelled awful. It smelled like death, and I really mean that. The entire SICU was permeated by this smell of death, decay, and frankly…….. despair.
cancer-research-price-tag
You see, this woman decided not to have chemo or radiation because she wanted more children, and she didn’t want to put ‘poison’ in her body. After getting all of the recommended exams over the years, and her breast cancer having been detected early, she decided to dump conventional medicine for a natural approach. As a nurse,  I have to respect her choice….though even now it make my eyes fill with tears.  I remember her name, her husband’s name….and have a picture of her children.
She nearly bankrupted her family and stayed away from her children to go to a far away state for treatments with a naturopath. Though she could see and feel the tumors growing, this charlatan took tens of thousands of dollars of her money to administer completely useless herbal treatments. He convinced her that she needed to give it time, and let the treatments work. She needed to have faith in him, and in God. This guy even told her that GOD wanted her to forego chemo.
After the biggest tumor broke through the skin, her husband put his foot down and demanded she see a conventional physician. By the time we got to treat her, the stage 2 breast cancer was stage 4 and everywhere. The outcome was not good. She left her children, eventually.  She never had that next baby.
I talked to her that night and she cried, voicing what she considered her stupidity and blind faith in this guy, who promised a cure. I told her that he was completely unethical and a con man, and that she should concentrate on her family. She was not to blame. She knew she would die of this mistake. It was not my place to drive the point home, and I would never have done that anyway.
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I actually wrote this blog years ago and edited it a little bit to reflect my current writing style.  Since then, I had my father-in-law die of cancer he ignored for 7 months because he wanted to die.  He knew it had returned since his last bout.  His brother died of cancer that he ignored as well, just a few months ago,  It must run in the family.
Please remember that snake oil salesmen do not sell miracles. If it sounds too good to be true, it is. Also, get a second opinion from a licensed physician, not a guy who set up shop in a strip mall. If we could be cured of cancer by flowers and berries in their nearly unprocessed form, I can think of some people in my family who would still be alive today. In short, chemotherapy, radiation and mastectomy is not a pleasant experience, but it beats the hell out of dying and leaving four kids under 12 and a grieving husband.
This is why I am such a restrictive jerk about the ‘natural’ remedies for serious illnesses.  I know some of them work.  However, I absolutely have to have scientific evidence that physicians and researchers have done large studies about the alternative treatment for it to be posted in Show Me Your Stethoscope.  Because I do not ever, EVER wish to be responsible for that.  I can see her face, and the tears running down it when I think about her, years later. I can smell that smell.
That is all. Except this lovely picture of an ulcerating tumor.
Love,
Janie
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Patient Satisfaction Tirade – Part Deux

By | end of life, Nursing, VA Nursing | One Comment

Apparently, patient satisfaction is really bothering me this week…

As some of you know, I work for the VA Healthcare System.  I love my job, mostly because my patients are awesome.  I actually went to work for the VA because I wanted to take care of veterans.  I am a veteran.  It is just as rewarding as I thought it would be. I am happy to take care of these guys (and increasingly, gals) every single day.

You know what is different about the VA?

No real agency financial penalty for bad patient satisfaction scores.  

So, the government is able to steal reimbursement from hospitals based on patient satisfaction scores, but the executives involved in VA care get productivity bonuses that are not based on patient satisfaction? The VA conducts patient satisfaction surveys occasionally, and we get a sample size of like three hundred veterans.  Why aren’t we sending out surveys to everyone when they are discharged? Why aren’t we making calls to survey all inpatients, or for that matter, all outpatients?

Because we don’t have to. End of. This blog from VA brags about its high scores, but it is the same less-than-300 sample size I told you about.

This is an issue.  If the federal government is making YOUR hospital financially responsible for patient satisfaction scores, why aren’t the executives at VA penalized for poor performance with a reduction in performance bonuses? 

I make it a point to ask all of my patients how their hospital stay is going. I have had one patient complain in 2 years. They mostly love getting their health care at VA. Non-VA Care like Veteran’s Choice is not as popular as you would think. Many of my patients turn it down.  It isn’t home.

But still, the federal government is not equally surveying the patient population. In Fiscal Year 2011, there were 550,000 inpatient admissions VA wide. Five MILLION unique patients were treated.  And in 2012, 300 vets were surveyed.  If I were making the VA budget, I would consider bonuses based on satisfaction, and watch the few terrible, entrenched VA employees I see treating patients rudely every day finally get fired.

Now, a story.I-love-story-time

This DID NOT HAPPEN WHILE I WAS A VA EMPLOYEE.  I am the family member of a veteran who was treated in the VA Healthcare system. He is now deceased.  This is HIS story:

John was always complaining about the ‘damn VA’.   However, he did not utilize many of its services correctly, and whether this was because of poor education by the VA’s employees, or extreme bullheadedness by John himself, we will never know. (I am guessing the latter) After he was correctly enrolled and in the system, it went very smoothly. They treated him well, he loved his doctors, and more importantly, he was treated holistically.  Mind, Body, and Soul. Conventional medicine with modern completeness.  Seriously.  I was impressed.

John was a long-time VA patient.  When he was diagnosed with cancer for the second time, and it was inoperable, he was offered every treatment option available.  The oncologist was so upset that John didn’t come to see him when the symptoms started eight months before.  This was his second round of cancer with John.  After a few chemo treatments, John decided it was not for him.  He was offered a pleurodesis to manage his malignant pleural effusions, which were seriously interfering with his activity.  Hospice was consulted early.  He was made a DNR.

Naturally, poor John had the one in a million allergic reaction to the talc. After the procedure, someone forgot to put his telemetry monitor back on… or he took it off to go outside and smoke. (more likely) When he came back and went to bed, he had respiratory distress and A Fib RVR.  His nurse found him down, and he was transferred to the ICU. During the chaos in the unit, his chest tube Atrium container was kicked over. So, naturally there was blood in all of the chambers.  (this becomes important later)

The next night, I was sitting in the doorway of his ICU room reading a book when he suddenly LEAPT out of bed, over the side rail, mumbling that he had to pee.  To say that he was a fall risk at this point would be a gross understatement.  He was weaving and bobbing like a ship in a hurricane.  I jumped up and held on to him, and grabbed the urinal on the bedside table for him to use, and called for help.  He was grudgingly allowing me to hold the urinal when his nurse appeared and shouted at me that I shouldn’t have gotten him out of bed.

I stated calmly that the side rail was still up and that he had leapt over it to stand to urinate, and that I did not attempt to ambulate him.  She then told me that I had kicked over the chest tube and interfered with her calculation of his drainage.  And then she said, “He is not going to get better if you try to do things he isn’t supposed to do!” About a terminal patient.  badnurse

Of course, the chest tube had been kicked over the previous night and she had obviously never looked at his drainage.  She shouted at me and shook her finger in my face.  And I told her to get the hell out of his room. Because she had been playing on her phone in a chair, and didn’t notice when he jumped out of bed until I yelled for help. He was very upset, hypoxic, and confused, and didn’t understand why this woman was yelling and being mean.

Needless to say, there was a scene that I don’t care to hash through again here.  I told the VA Police officer and Nursing Supervisor that I would have him transferred to another facility immediately if that woman came anywhere near him again.  I didn’t want him to see anything ugly this close to the end.  They assured me that our wishes would be followed.

We took him home to die a few days later.  Hospice was provided.  A bath aide, social work, home oxygen, medications increased on demand, etc. It was amazing.  I wrote the VA a pretty great letter about his care after he died.  It was four years ago, yesterday.  

Wait….I forgot to complain about his care in the ICU!

No, I didn’t.  His care was great at the VA.  I am a healthcare professional, and I knew that nurse was not the rule.  She was the unfortunate exception.  I guarantee you that if I had been a layperson you would not have heard this story of great VA care.  I would simply have complained about that unit nurse.  pg2

Why are we allowing lay people to rate the value of their treatment based on their perception of their care instead of the reality?  Like I just rated John’s.

While a layperson may have seen nothing but the awful attitude of the ONE staff person we had an issue with, I can see the wonderful care given by the literally hundreds of staff members we interacted with at the VA.  Because I am a medical professional.  And I can rate these things with an eye toward truth rather than how I was made to feel.

Patient satisfaction based reimbursement has to go.  And so do performance bonuses at the VA in my not-humble-at-all-opinion.

Discuss.

Love,

Janie

 

 

 

 

 

 

 

 

 

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This is the 100th Blog Post on SMYS. Guest Blog by Cherie Ulmer-Mulvey

By | end of life, Nursing | No Comments

This stethoscope was last used at 5:50am on Friday, February 12, 2016. It was used to pronounce the mom of my best friend of 36 years.
It was never mine but it was used by her husband for a very long time…through a diagnosis of class IV cardiac failure, through a heart transplant and for the last 10 years, through her diagnosis of Alzheimer’s.
After it was used to pronounce her, her husband told me to keep it, that he has no use for it anymore. I tried to explain to him that I had my own stethoscope. He told me that I have to use this stethoscope one more time in my life and I immediately knew what he meant. He winked at me and walked away. steth
I have known this man for 36 years, he has yelled at me, punished me (not my dad) and always been who he is and we have been known to lock horns more than once. I sat and prayed with him that morning and cried with him too… These were things I never thought I would do with him.
We buried my best friend’s mom today and today…
I am Showing You My Stethoscope with pride and pain and tears but most of all with LOVE…

 

 

 

Thank you, Cherie for reminding us what that Stethoscope sees. Witnessing the life, the death, the joy, the pain and the everything.

That is who we are.

That is nursing.

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A Nursing Story – with ZdoggMD props (not a fangirl post, Dogg)

By | Advocacy, Education, end of life | 2 Comments

When I was a fairly new nurse, I had the patient who would change nursing for me forever.

Most of us can say that….but read on.

I was working in SICU, and I was caring for a very elderly lady (upper 90’s) after abdominal surgery. She was one of those super healthy 90+ folks.  She still drove.  Sharp as a tack, and a sweetheart!

Even as a new nurse, that last part chilled me.  The sweet ones always had the worst luck.

The surgery was routine, but she became hypotensive on the floor.  The transfer was initially appropriate.  She had a DNR in place, but we all know that does not mean ‘do not treat’.  She was septic, of course. We did all of the ‘ICU Magic’ and she soon had a central line, pressors, and our (rudimentary at that time) sepsis protocol in place.  She could still consent to these things, but cautioned us that she didn’t want to be on a ventilator for any reason.  

Her husband died without ever coming off the vent 15 years earlier.

Her children visited; all seven who were still alive.  She outlived two of them.  Her oldest daughter was her medical power of attorney.  During the family conference, she held her mother’s hand and agreed with her when she indicated she did not want to be put on a ventilator for any reason.  2011-02-18-047_DyingProhibited

She was placed on BiPap, her organs were shutting down, and was no longer able to consent when a well-meaning first-year doc suggested intubation as a temporary measure.  Alarm bells chimed in my cranium.  I gently suggested to both the physician and the daughter (separately) that intubation was rarely a short-term fix for a woman this ill and this old. I also reminded both of them that this lady was absolutely against this, and had stated it repeatedly.  

I had three days off.

When I returned, Granny was on a vent and pressors, had a rectal tube, NG, art line, and foley catheter.  We couldn’t really sedate her because she was so hypotensive, and she would fight the restraints, pull out the tubes, and roll around in her own feces. Granny, remember her? The lady who didn’t want all of this? She had ICU psychosis, multi-organ failure, and I wanted to stick a 14 gauge IV catheter into my own eyes to kill the pain I felt just looking at her. Her daughter decided she “Wasn’t giving up on her, because she is a fighter” She made her a full code. futile

Eventually, a doc decided enough was enough and told the family that simply nothing else could be done.  When they pulled that ETT, the family stood around absolutely bewildered, and angry that no one told them that granny wouldn’t get better before ‘All of this started’. 

She gasped like a fish until she died.

And nursing changed for me, forever.  

Granny, I am sorry I didn’t advocate harder for you with your daughter.  I will feel the pain I caused you by my inaction forever.

Thanks to ZDoggMD for helping us talk about futile care and why we should make AD’s ironclad with his song  Ain’t the Way to Die.  <—click

Love,

 

Janie

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