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Hi, it’s Patrik Hutzel from INTENSIVECAREHOTLINE.COM , where we instantly improve the lives of Families of critically ill Patients in Intensive Care, so that you can have PEACE OF MIND, real power, real control and so that you can influence decision making FAST, even if you’re not a doctor or a nurse in Intensive Care!
This is another episode of “YOUR QUESTIONS ANSWERED” and in last week’s episode I answered another question from one of our readers and the question last week was PART 2 of Laura, one of our reader’s question “My Dad is in ICU after a subdural haematoma, he’s had multiple surgeries and he’s not waking up! Help!”(PART 2)!
You can check out the answer to Laura’s question last week’s here.
In this week’s episode of “YOUR QUESTIONS ANSWERED” I want to answer another question from one of our readers and in this week Sunne from California, USA asks:
“I have MS, I was in ICU with Pneumonia and the Intensive Care team COMPLETELY IGNORED MY WISHES TO NOT HAVE ANY LIFE SUPPORT!”
Hi Patrik,
I was in the intensive care unit this past January. I went into respiratory failure from double pneumonia. I woke up with a BIPAP mask on me. I pulled it off and yelled to the staff “your suffocating me and I have a DNR(DO NOT RESUSCITATE). STOP!”
No one paid any attention to me. I kept pulling the mask off over and over and demanding I have a DNR(Do not resuscitate). I am a disabled 58 year old with MS. They also treated me for MRSA without culture tests or making me aware of this. I found in my records that I never had MRSA.
I remember waking up again with this mask on my face too weak to pull the mask off and my family was there. They told the Intensive Care team about my DNR. They took the mask off and put me in a room!
I then got C-DIF for 29 horrifying days. I left the hospital so angry and so very weak on top of my disability. The antibiotic treatment destroyed my stomach and caused my hair to fall out. I had beautiful hair. My stomach is still sensitive and its May.
Why did they not listen to me about my DNR(Do not resuscitate)? I was very awake and coherent! In the state of California it is a state law to get informed consent or ask the Patient his or her wishes.
My primary doctor told me to seek legal advice. Now I have sought advice. This hospital cannot come up with an answer why they didn’t honour my wishes. I’m waiting for my answer, the Hospital has a year to come back with a good one.
Please write about your verbal rights.
regards
Sunne
Dear Sunne,
thank you for your email and for your question!
I am very sorry to hear the ordeal you have been through in Intensive Care, despite making your wishes very clear from the start with your DNR(Do not resuscitate)!
I am absolutely shocked and appalled by the way you are describing how the Intensive Care Unit has treated you. It’s very disturbing to find that no one was paying any attention to your wishes and respected them.
There are a few things that I can see in your situation and why the Intensive Care Unit may have ignored your DNR(Do not resuscitate). I also have to warn you that some of the things that I am about to reveal to you may sound quite harsh and a little unreal, however from my experience in more than 15 years Intensive Care nursing in three different countries this is what my observations have been.
1) Depending on how alert or conscious you were during your time in Intensive Care the discussions about your DNR should have taken place with you and should have been followed and respected by the Intensive Care team
2) Depending on what was happening at the time in the Intensive Care Unit, whether they were busy or not, they may have had an interest in continuing treating you as they wanted to have their beds occupied and earn money and/or attract some funding. I know this sounds harsh, but that’s the unfortunate reality how many Intensive Care Units operate. It could have been very differently if the Intensive Care Unit at the time had been very busy and would have needed the bed. They would then happily followed your DNR…
3) They may also have told your Family that a recovery is possible and therefore they may have suggested to your Family to ignore the DNR
4) Your Family may have not been assertive enough to make sure your wishes are followed- I will shed more light on this below
5) Intensive Care Doctors/ Physicians in particular always think they know “what’s best” and they always think they know “what’s in the best interest” of a critically ill Patient. Nothing could be further from the truth and their behaviour is often bordering on arrogance by assuming they know “what’s best” or “in the best interest” of someone. Unfortunately society has conditioned itself to put too much trust and faith in the doctors and they often get away with completely irrational and arrogant behaviour
6) Especially your statement about treating you for MRSA without doing the culture test is extremely worrisome. I can only imagine how you must have felt by getting all the strong antibiotics. It wouldn’t surprise me if your C-Dif has resulted from the treatment for your MRSA that was non- existent. I can see two possible reasons why they may have treated you for MRSA without testing you for cultures.
a) If you came through another facility(different hospital or other health care facility) they may have a policy that they “have to treat” every Patient not coming from home for MRSA as the risk of being MRSA positive is increased when coming from another Hospital or health care facility
b) They were doing some medical research. The unfortunate reality is that many Patients and vulnerable Patients in particular are being secretly and silently enrolled in research studies. The Intensive Care team always has medical research going on and in the vast majority of Patients from my experience they are doing the research without seeking verbal or written consent. This could also apply to your DNR order. The Intensive Care team may have recognised from the start that your case may fit a research criteria- maybe about MRSA???- and they therefore wouldn’t let you go.
7) You may also want to find out whether the Intensive Care Unit or the Hospital has a Policy around DNR. It would be worthwhile you getting hold of that document, because it might clarify their behaviour and it may also specify your rights
Recommended resources:
Coming back to why the Intensive care team may have ignored your DNR. There are a number of things you need to keep in mind. I assume you had a documented and valid DNR with you at the time you got admitted to ICU. I would also assume that your Family had knowledge of this and had a copy of the DNR or even the original.
In any case, I would have thought that your Family would have been your strongest advocate in this situation. The reality also is that most Intensive Care teams are very adept and shrewd when it comes to “selling” what’s “best” or what’s “in the best interest” of a critically ill Patient, without revealing their hidden agenda such as bed status or research interests. The unfortunate reality is also that Families of critically ill Patients also don’t question and they are oblivious to what’s happening “behind the scenes” in Intensive Care!
Here are some links to a couple of articles about how Families should manage meetings with the Intensive Care team
How can I be prepared, be mentally strong and be well positioned for a Family meeting with the Intensive Care team? PART 1 & PART 2
Please also check out this interview(click on the link below) that I did earlier this year with Professor Thaddeus Pope a medical futility expert and lawyer. We discuss end of life care issues in Intensive Care and we also discuss issues around when wishes by Families or Patients are being ignored
Podcast interview with Medical Futility expert and lawyer Professor Thaddeus Pope
https://intensivecarehotline.com/podcast-interview-professor-thaddeus-pope/
You can also check out Professor Pope’s blog, because he has information about NFR or DNR issues on his website and he also points out the differences in different states in the US when it comes the legislation.
http://medicalfutility.blogspot.com.au/
I really hope this helps and please let me know if you have any more questions.
Also, the advice that I’ve given you is advice that is based on my experience as a Critical care nurse, it’s not legal advice by any means, as I am not qualified to give legal advice.
Your friend
Patrik Hutzel
How can you have PEACE OF MIND, control, power and influence whilst your loved one is critically ill in Intensive Care?
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- How to ask the doctors and the nurses the right questions
- Discover the many competing interests in Intensive Care and how your critically ill loved one’s treatment may depend on those competing interests
- How to eliminate fear, frustration, stress, struggle and vulnerability even if your loved one is dying
- 5 “killer” tips& strategies helping you to get on the right path to PEACE OF MIND, control, power and influence in your situation
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- How to stop being intimidated by the Intensive Care team and how you will be seen as equals
- You’ll get crucial ‘behind the scenes’ insight so that you know and understand what is really happening in Intensive Care
- How you need to manage doctors and nurses in Intensive Care(it’s not what you think)
Thank you for tuning into this week’s episode of “YOUR QUESTIONS ANSWERED” and I’ll see you again in another update next week! Make sure you also check out our BLOG section with more tips and strategies or send me an email to [email protected] with your questions!
Also check out our Products section where you get more Ebooks, Videos and Audio recordings and where you can also get 1:1 consulting!
This is Patrik Hutzel from INTENSIVECAREHOTLINE.COM and I’ll see you again next week with another update!
Sincerely, your Friend Patrik Hutzel