Hi there!

Today’s article is about, “Quick Tip for Families in Intensive Care: My Mom's in ICU with Liver Failure & Tracheostomy. They Want to Stop Treatment Without Our Consent. Help!”

You may also watch the video here on our website https://intensivecarehotline.com/blog/quick-tip-for-families-in-intensive-care-my-moms-in-icu-with-liver-failure-tracheostomy-they-want-to-stop-treatment-without-our-consent-help/ or you can continue reading the article below.

Quick Tip for Families in Intensive Care: My Mom's in ICU with Liver Failure & Tracheostomy. They Want to Stop Treatment Without Our Consent. Help!

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

So today, I have an email from Maria. Maria is also one of our members. We have a membership for families of critically ill patients in intensive care. You can become a member if you go to intensivecarehotline.com and you click on the membership link.

Now, Maria writes,

“I was in the hospital last night and the nurse was speaking to me that my mom has to have more pain medications and let her go. She was to the point of being able to have a speaking tracheostomy fitted and she was communicating with us at the last family meeting with the ICU team on Thursday.

On that weekend, they put a fentanyl patch on her without our knowledge or consent. From there, she went into a basically non-communicative mode, looking into the sky without blinking and closing her eyes. For what it seems, there is no return from here. I love how they emphasize about me believing in miracles which I do but whatever.

The nurse says, my mom has been there for 55 days, and she’s done. To just let her go because she will never get better. I don’t know what to do.”

Well, I know, obviously, about the member that their mother is in ICU with liver failure, and that a liver transplant for now has not been considered.

Now, the bottom line is why would you give someone medication without their consent? That’s Number 1. Why would you keep focusing on end-of-life care instead of symptom management, instead of getting her better or at least maintaining her current status quo if that’s what the patient and the family wants?

Now, also by giving fentanyl, again, if the patient is not in pain and is communicating, doesn’t make a lot of sense. It could be the first step towards palliative care, which might be end of life care. It doesn’t have to be, but which might be end of life care. It’s shifting the focus away from improving this lady’s situation, which is what the family and the patient wants.

Interestingly enough, when we look at the medical records, which is something we do for our members and for our clients, she’s come off the ventilator. She’s still on some norepinephrine or noradrenaline to keep her blood pressure stable, but she has actually improved. So, why not wake her up? Let the fentanyl go and ask her what she wants? What happened to patient and family choice?

One of the questions that I always had after having worked in intensive care for nearly 25 years in three different countries where I worked as a nurse manager for over 5 years where I’ve been consulting and advocating for families in intensive care here at intensivecarehotline.com since 2013.

I can very confidently say we have saved many lives with our consulting and advocacy. You can verify that on our testimonial section at intensivecarehotline.com. You can also watch our podcast with our clients at intensivecarehotline.com and the clients will tell you what we’ve done for them.

So, coming back to our member here, their mom is actually improving while she’s still in liver failure, she’s coming off the ventilator. So, you got to watch for the signs, and you got to actually look for what is really happening. You can’t just say, “This lady is in liver failure; therefore, she must die because there’s nothing else we can do.” Well, she’s definitely improving.

So, one of the questions that I always had when I worked in ICU and even now with talking to families in intensive care and to intensive care teams all around the world every day, what’s the urgency to kill someone? Where’s the urgency in that? I’ve yet to find out.

Instead of talking to patients and families what they want, just because someone has been in ICU for 55 days doesn’t mean, I’m paraphrasing here from what our member writes, the nurse says she’s “done”. That’s a terrible term to use as far as I’m concerned, that’s not how you talk about people, I believe. That’s not how you talk about your patients in ICU. I actually think that’s very disrespectful, if anything.

So also says in the report, I’m not mentioning names here, but the patient has improved over the last 7 to 10 days and has been liberated from the ventilator at least for a significant period of time now. She still requires a norepinephrine infusion for her dialysis but not in between. She may benefit from a higher hemoglobin and ongoing transfusions as some might when difficult to wean from a ventilator or inotrope.

So, she should now advance to a speaking valve ideally if tolerated and then talk to the patient what she wants. She’s of sound mind. There’s nothing that can stop her from making her own decision and then maintain hemoglobin and try to wean further from vasoactive medications, monitor for paracentesis needs in the future.

So, you have to read between the lines, you have to interpret clinical data, which is what we’re doing here at intensivecarehotline.com. You have to get a second opinion when you have a loved one, critically ill in intensive care. It’s a once in a lifetime situation that you can’t really afford to get wrong.

End of life care doesn’t happen in a vacuum like many ICUs pretend it is. Many ICUs pretend well, we can do whatever we want, which includes withdrawing treatment, and they can’t. They can only until you challenge it, and then you will see that the dynamics will change in your favor, but they will often try because ICU beds are in short supply. ICU resources are in short supply. So therefore, ICU teams will always try and push to empty ICU beds as quickly as possible. That can happen by discharging patients because they’re getting better, or it can happen.

On the other end, if the ICU team perceives that patients aren’t getting better, then the talk is often started about withdrawing of treatment, and that might have his time in its place in a certain situation when there’s a real end of life situation. But in this situation, it’s just a perceived end of life situation and there’s a big difference there.

So, I hope that helps you to understand the intensive care world better if you have a loved one critically ill in intensive care.

If you have a loved one, critically ill in intensive care, we have built a membership for families of critically ill patients in intensive care. You can become a member if you go to intensivecarehotline.com if you click on the membership link or you go to intensivecaresupport.org directly. In the membership, you have access to me and my team, 24 hours a day, in the membership area and by email and we answer all questions intensive care related.

In the membership, you also have exclusive access to 21 e-books and 21 videos that I have personally written and recorded that will help you to make informed decisions, have peace of mind, control, power, and influence, making sure your loved one gets best care and treatment.

I also do one-on-one consulting and advocacy over the phone, Skype, Zoom, WhatsApp, whichever medium works best for you. I also talk to doctors and nurses directly and I ask all the questions that you haven’t even considered asking but must be asked when you have a loved one, critically ill in intensive care. I also represent you in family meetings with intensive care teams.

We also do medical record reviews in real time so that you can get a second opinion in real time. We also do medical record reviews after intensive care if you have unanswered questions if you need closure or if you are suspecting medical negligence. All designed for you to make informed decisions, have peace of mind, control, power, and influence, making sure your loved one gets best care and treatment.

All of that you get at intensivecarehotline.com. Call us on one of the numbers on the top of our website or send us an email to support@intensivecarehotline.com with your questions.

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

I also do a weekly YouTube live where I answer your questions live on the show. You will get notification for the YouTube live if you are a subscriber to my YouTube channel or if you are a subscriber to our email newsletter at intensivecarehotline.com.

If you want your email read out and answered quickly, leave a donation here in the super chat button on YouTube. I have so many emails sitting in my inbox. I’m barely keeping up making these videos. If you want to leave a donation anyway, to support our work, that is also appreciated, that helps us to make as many videos and blogs for families in intensive care as possible.

Thank you so much for watching.

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

Take care for now.

• Email counselling/consulting with Patrik
   
• One on One phone/ Skype counselling/consulting with Patrik