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Hi, it’s Patrik Hutzel from intensivecarehotline.com with another quick tip for families in intensive care.

So, today’s tip is more about, “What goes through a surviving ICU patient’s mind when they come out of ICU?” This is actually about a client we worked with, would have been two years ago, maybe. The client was in ICU at the time with COVID like many of our other clients during the COVID period.

I remember working with a client who was in an induced coma in ICU at the time, and we were working with the family to try saving her life because the ICU was adamant that the client would not survive and if she was to survive, it was not in her “best interest.” That’s absolutely ridiculous.

Now, listen to these lady’s letter to the hospital that treated her at the time, and the question she’s asking.

“I’m writing the letter to inform you of my complaint regarding poor practice standards of care, neglect, misconduct, unconscious bias, and the inadequate way that information was given to my family before putting me in ICU when I was admitted to hospital.

After going through a massive ordeal, brain fog, receiving physiotherapy, medication, and lots of back-to-back appointments, it has only been now, I’m able to write a letter of complaint.” This is probably after about two years after ICU discharge.

“Over the next few weeks, I will be sending a detailed account of what had happened to myself during my stay in hospital. This will lay out a full account of my ordeal and practices that took place regarding my care.

The outcomes I will be looking for are full transparency, accountability, accurate diagnosis, what went wrong, acknowledgement of instances that could have been dealt with differently or better. As a result of not being satisfied with the care I was given at the time. I have detailed accounts of what took place and why I have made this complaint.” The client gives the date. I’m not going to share the data.

“I was admitted to the hospital, respiratory ward, shortness of breath, fever, and a cough. They did observations, took bloods, and could not diagnose my symptoms. I would like to know why I was not handled appropriately as doctors did not have a diagnosis to treat anything, but I was still given medications and when queried. Doctors could not answer any medication queries.

When I asked the doctor on the ward, I had pneumonia and sepsis. I was told no but my records state that I had chest sepsis. I was given 1 gram of IV Meropenem the start date was… I believe this contributed to my admittance into ICU.

Why was I given medications even though I never needed it in search of what it might have been, for example, Lupus, SLE (Systemic Lupus Erythematosus), ILD (Interstitial Lung Disease), or Vasculitis.

When I was in pain in the respiratory ward, I refused pain relief until the last moment and my pain was not taken seriously. Why was I handled like this by the nurses in charge? I believe one of their names was…” I am not going to mention names, and the other was another lady.

“I remember complaining to a nurse about her behavior towards me, not sure what the outcome was. Although I was struggling to breathe, I was told that they wanted to put me to sleep, and I might never wake up. This caused me a lot of stress and anxiety. Why was it not discussed that I might not wake up and any other options given to me? How come I wasn’t ever given a chance to discuss anything with my family of options and outcomes? Why was I denied support from my family at this stage?

Then, I was put in an induced coma. What was the reason I was put into an induced coma? Why was there no consultation with myself and my family? We were never asked questions if I wanted to and why they needed to do this.

Why was I in an induced coma for so long? What was done to me while I was in the coma and why? Why was I put on heavily sedated drugs where I felt paralyzed even though I wanted to be responsive? I felt like I was being put to death.

I was told by a respiratory nurse at my appointment that I had my nerves shut down. I was not consulted or any family members. I believe that’s why my foot has been affected by this procedure and being left in a coma. Was it necessary?

Why was the DNR (do not resuscitate) put on my records and never discussed with me if that’s what I wanted? Who put the DNR in place? Why was my daughter told that if she wasn’t so far pregnant that they would have switched off the machines without anyone’s consent? Is this legally allowed?

Also, my sister felt pressured into arranging a meeting for best of interest and then felt uncomfortable to visit me.

My son who was overseeing things when I was in ICU recounts a few times, he felt his opinion was disagreed or told he had “wishful thinking” by a doctor so and so. He also asked to review records, particularly ABG, arterial blood gasses, at times, he was told he was not allowed, and he had to raise his legal rights. Once he was challenged by the head nurse and the consultant from palliative care, this led him to feel increasingly uncomfortable to inquire about the status of my ABG.”

Now, I do remember why this lady was in a coma for so long. I tell you why because together with the family, we were advocating for a tracheostomy, and they refused. There was a prolongation for this lady to be in an induced coma because the ICU did not want to do a tracheostomy. We were obviously advocating for it because we were giving them all the facts why this lady should have a tracheostomy and not have life support withdrawn.

Well, in the end, we succeeded with the advocacy for a tracheostomy, but the reality is that she therefore had to be in an induced coma for much longer, which probably increased her brain fog and her ability to deal with what’s happening afterwards. The shorter the period in an induced coma, generally speaking, the quicker the recovery time.

Now the letter continues to the hospital,

“When the family was consulted, they were told that the hospital could go to court for permission to turn off the machines in ICU, is this legal?

After looking at my notes, it states that I had long term COVID when I was not told that, and I was also tested numerous times which came back negative. Did I have long term COVID and if so, why was I not informed of this?

I believe when I was on board such and such, I was given two separate medications, Rituximab and Cyclophosphamide. After giving those two medications, I deteriorated, and I believe that’s why I went into ICU. In my records, it states that I am tiny in my habitus, and I may not have needed the standard adult dose.

I believe that I have also been left with life-changing injuries/disabilities due to mismanagement of my symptoms, which has also left me with severe nerve damage and not being able to use my foot, causing foot drop. In turn, this has affected my quality of life long-term.

Before I was discharged, to my understanding, there was a care plan in place. I was unable to see this and was not given any input of my care, which I felt I should have been considered. My overall complaint is the hospital had not included me or my family in any key decisions being made concerning my care. This I believe is wrong and needs to be addressed.

Here is a list of some of the doctors and staff I believe were involved in my care wis in ICU and on board such and such.” I’m not going to read out any names, of course.

So, I think hospitals have a lot to answer for, especially when they advocate that it’s in the interest of a patient to die. Well, this client has some questions that the hospital needs to answer, and I can only wish her all the best that she gets some answers. I believe we can also get some answers by reviewing medical records but in this instance, it’s obviously very important to get it from the horse’s mouth, so to speak.

For anyone watching this, if you have a loved one in intensive care, you now have a better idea of what to look for and what your rights are. It’s never legal to just switch off life support, which is illegal, as a matter of fact.

So, putting someone on DNR is illegal, assuming it’s without consent, of course, and in this instance, it’s without consent. A lot of our clients are dealing with situations where ICU just override consent and it’s illegal.

We can turn these situations around for you because if you have a loved one in intensive care and you don’t want this to happen to you, go to intensivecarehotline.com. Call us on one of the numbers on the top of our website or simply send us an email to [email protected] with your questions.

Also, have a look at our membership for families in intensive care. There, you have access to me and my team, 24 hours a day, in a membership area and via email and we answer all questions, intensive care related.

If you need a medical record review in real time, please contact us as well. We review medical records in real time so you can get a second opinion straight away, like we did with this lady to help her survive her ICU ordeal so that she can have time with her family and live her life. I also consult with families directly. I talk to doctors and nurses directly in intensive care like I have done with this particular client and help her to turn around what seemed to be an impossible situation. If you need a medical record review after intensive care because you are having unanswered questions, you need closure, or you are suspicious of medical negligence, please contact us as well. We can help you with that.

Now, subscribe to my YouTube channel for regular updates for families in intensive care, click the like button, click the notification bell, share the video with your friends and families, and comment below what you want to see next or what questions and insights you have from this video.

Thank you so much for watching.

This is Patrik Hutzel from intensivecarehotline.com and I’ll talk to you in a few days.

Take care for now.