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Quick Tip for Families in Intensive Care: ICU Wants to Withdraw Treatment & Ventilation for Low Conscious State—Family Pushes for Tracheostomy

“ICU wants to withdraw treatment for a low conscious state patient, family pushes for tracheostomy.”

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 make informed decisions, have peace of mind, control, power, and influence, even if you’re not a doctor or a nurse in intensive care. So that your loved one gets best care and treatment always.

So today, I have an email from one of our clients and members who says,

“Hi Patrik,

So, the meeting with ICU went as predicted, the second opinion came back concurring with the current ICU team. The doctors are still recommending we extubate the breathing tube and let my sister manage by herself and let her die.

We, the family, have pushed back and said we need more time, at least 6 months to see how we go and reassess further down the line. They are 100% sure she will never recover from this “low conscious state“ and that we should consider the “best interest of the patient” and remove the breathing tube and letting her die.

I’ll stop the email now for one moment and say, since when is it in the best interest of someone to die unless they want to. Our client’s sister has not suggested she wants to die.

So, the email continues.

We have asked for the tracheostomy and said we need a long-term solution to keeping the airway open. The doctor said, he will not be treating infections with antibiotics going forward, as that is, once again, “not in the best interest of the patient”, as we are just prolonging my sister’s suffering.

And who’s to make that judgment, whether someone is suffering or not, and who’s to make the judgment that their suffering is worth it or not. Certainly not the doctors in ICU.

So, the email continues.

We discussed the DNR process. DNR stands for do not resuscitate. They said they will not resuscitate if needed. They are effectively withdrawing care and treatment other than feeding, nursing and monitoring. They will not stabilize blood pressure if it were to fail. We strongly oppose these measures, but the doctors are allowed to do what they think is, “in the best interest of the patient”. Families’ opinions are considered but not followed necessarily.

The opinion of all of the ICU team and second opinion is she will never recover to any degree of, ”meaningful life.” She will remain in a “low conscious state for the remainder of her life.”

Now, once again, what’s meaningful is not up to the ICU team. It’s up to you as a family

We have said we are opposed to these measures, and we wish for her to continue with the ventilator and would like the ETT (Endotracheal Tube) to be removed and replaced with the tracheostomy.

We had 2 long meetings today and close out the meetings with the doctor to take our wishes back to the hospital team to discuss next actions. I have asked the doctor to put any major changes, for example, the DNR directive, ceiling of care and treatment, withdrawal of treatment on an email so we are clear what is happening when.

Conversations in a meeting room can be here, say, misinterpreted, misinformation, and easily retracted. We also said we will be seeking a 3rd independent opinion when the medical records are released.

Many other things were discussed, but that is a very short summary. I have attached today’s screens; can you please check if there’s anything we should be concerned about?”

So, let’s break this down.

This is obviously from one of our clients and members, and I can assure you. The patient is still alive because, we know how to advocate for patients and clients in a situation like that. It is a pattern we, unfortunately see very far too often.

The ICU team, backed by a second opinion, was probably, someone they know, like and trust, it’s not really a second opinion, because the industry is very small, and they probably ask a friend or someone they’ve worked with in the past. It’s not really a second opinion. It’s not an independent second opinion anyway.

As recommended, removing the breathing tube, also known as endotracheal tube or ETT from our client’s sister who has been diagnosed with a “low conscious state”, they believe she will never regain what they call a “meaningful quality of life” based on that assumption, not fact.

They want to withdraw life sustaining treatments, including the ventilator, blood pressure support, and antibiotics. They’re now saying they won’t resuscitate the patient if she arrests. They won’t treat infections, and they won’t stabilize her if her blood pressure drops.

In other words, they’re wanting to move to a palliative care approach and withdrawing active treatment, even though the family has made it very clear they wanted tracheostomy as a long-term airway option and want to keep her alive to give her the chance to improve.

This is medical paternalism at its worst, where ICU teams believe their opinion is superior to the family’s wishes, and they’re using, “best interest language” to justify denying basic life-saving treatment.

But let me be clear, if someone is alive, breathing, even with support, has vital signs, and you, as the family want full treatment, you have every right to demand it. And if the ICU team says they want to treat infections or give antibiotics, they are effectively trying to hasten death.

And hastening death. Is the definition of euthanasia. And euthanasia is illegal. And if you’re not calling ICU teams out on that, you’re basically fighting it up the battle, you need to fight, you need to call them out on their illegal behavior.

We always, always advise families in this situation to get everything in writing, including any DNR orders, treatment limitations, and the so-called, “ceiling of care.” Verbal meetings can be easily misinterpreted and manipulated even later. Document everything.

Also, we 100% support the idea of getting a third independent medical opinion, ideally from a neurologist not affiliated with the current hospital or ICU team. We want someone who will assess based on current function and potential, not assumptions or biases.

Now, let’s talk about options moving forward. If the tracheostomy is done and the patient stabilizes, you should immediately start exploring options for long-term ventilation at home, especially if the hospital is wanting to withdraw treatment and care.

That’s where we come in with Intensive Care at Home, and you can find more information at intensivecarehome.com. We offer 24/7 ICU nurses at home for long-term ventilati0n, care in line with evidence-based Mechanical Home Ventilation Guidelines. The ability for you to take your loved one out of ICU safely and on your terms. The ability to keep your loved one alive and give them time.

ICU is not the only place for someone on a ventilator with a tracheostomy. We have helped many families take their loved one’s home, even when doctors said it wasn’t possible or “not in the best interest of the patient.” That sort of language needs to stop. You are the only ones who know what’s best for your family member.

If you’re in a situation like this where ICU is pushing to withdraw treatment or not offering a tracheostomy, reach out to us at intensivecarehotline.com for a 1 to 1 consultation. Or go to intensivecareathome.com if your loved one already has a tracheostomy or needs non-invasive ventilation at home.

I have worked in critical care nursing for 25 years in three different countries where I worked as a nurse manager for over 5 years in intensive care. I’ve been consulting and advocating for families in intensive care since 2013 here at intensivecarehotline.com. I can very confidently say that we have saved many lives with our consulting and advocacy because of our insights. You can verify that on our testimonial section at intensivecarehotline.com. You can verify it on our intensivecarehotline.com podcast section where we have done client interviews because our advice is absolutely life changing.

The biggest challenge for families in intensive care is simply that they don’t know what they don’t know. They don’t know what to look for. They don’t know what questions to ask. They don’t know their rights, and they don’t know how to manage doctors and nurses in intensive care.

That’s why we help you to improve your life instantly, making sure you make informed decisions, have peace of mind, control, power, and influence, making sure your loved one gets best care and treatment always. That’s why you can join a growing number of members and clients that we have helped over the years, saving their loved ones’ lives.

That’s why I do one on one consulting and advocacy over the phone, Zoom, WhatsApp, whichever medium works best for you. I talk to you and your families directly. I handhold you through this once in a lifetime situation that you simply cannot afford to get wrong. When I talk to families directly, I also talk to doctors and nurses directly, asking 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 in case you have unanswered questions, if you need closure, or if you are suspecting medical negligence.

We also have a membership for families of critically ill patients in intensive care, and you can become a member if you go to intensivecarehotline.com, if you click on the membership link, or if 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 via email, and we answer all questions intensive care related. In the membership, you also have exclusive access to 21 eBooks and 21 videos that I have personally written and recorded. All of that will help you to improve your life instantly, make informed decisions, have peace of mind, control, power and influence, making sure your loved one gets best care and treatment always.

All of that you get at 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.

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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.