My name is Patrik Hutzel from intensivecarehotline.com, and this is another quick tip for families in intensive care. At intensivecarehotline.com, we improve the lives for families of critically ill patients in intensive care instantly so that you can make informed decisions, have peace of mind, control, power and influence, making sure your loved one always gets best care and treatment, even if you’re not a doctor or a nurse in intensive care.

So, because when it comes to life and death decisions in ICU, your family only deserves the best, and your family deserves to be heard. Today I have a question from Renee.

“Hi Patrik,

The doctors are suggesting that we take my father off of life support. It’s been a little over a week. My father is in a ventilator and was in dialysis. I feel that he can hear us when we talk to him, and he opened his eyes.

When doctors recommend withdrawing life support after just over a week, but we’re seeing signs like eye opening and possible responses to our voices, how do we know if these are meaningful signs of awareness and potential recovery or reflexive movements that don’t indicate consciousness, and what rights do we have to request more time or additional neurological assessments before making this irreversible decision?”

-Renee

Now before I go into explaining to you what’s happening and before I go into your rights, let me rephrase your question. What rights does the intensive care team have to kill your father? Think about that. Probably not many.

Thank you for reaching out, Renee. First and foremost, I want you to know that what you’re feeling right now is completely valid. You’re not imagining things, you’re not in denial. You are a daughter who’s paying close attention to her father, and that matters enormously.

Let me address your question directly, clinically, and honestly.

One week in ICU is not enough time in most cases. Let me say this clearly, one week in ICU on a ventilator is, in most cases, not enough time to make a definitive prognosis, especially if the underlying cause of your father’s critical illness has not been fully reversed or stabilized.

ICU is a very dynamic environment. Patients who are sedated, on opiates, on ventilators, and receiving dialysis are dealing with an enormous physiological burden. Sedation medications alone can take days, sometimes weeks, to fully clear from the body, especially in critically ill patients with impaired kidney or liver function.

If your father was on dialysis, that tells me his kidneys were under significant stress, which also affects how quickly these medications are metabolized and cleared. So, when you say he opened his eyes, and you feel he can hear you, I would not dismiss that these are potentially meaningful signs. Here’s the clinical reality – eye opening and apparent responses to voice can absolutely be signs of emerging consciousness, not just reflective movements, particularly when they happen in context in response to familiar voices at the bedside.

How do you tell the difference between meaningful signs and reflexes? It’s a critical question. Here’s what you need to understand.

Reflexive movements are automatic; they don’t respond to context or command. They happen whether or not someone is speaking to the patient.

Meaningful responses tend to be contextual. They happen when you speak, when you hold their hand, when you call their name. They may be inconsistent, but inconsistency in early emergence from sedation or critical illness is completely normal.

A proper neurological assessment ideally by a neurologist, not just the ICU team, should include:

1. Glasgow Coma Scale assessment at different times of the day, ideally hourly.
2. Four (full outline of unresponsiveness) score assessment evaluation for purposeful movement.
3. Does he follow commands even inconsistently?
4. Formal EEG (electroencephalograph) if there are any concerns about seizure activity or subclinical seizures.
5. CT scan or MRI of the brain, if not already done recently.

Assessment for ICU-acquired delirium, which is extremely common in ventilated patients, and can mimic both unresponsiveness and inappropriate responses. If these assessments have not been made or have not been repeated recently, you have every right to ask for them.

Now let’s talk about your rights as a family, because this is an absolutely critical point and very important, Renee.

Here’s what you need to know, you have the right to ask for a second opinion. You can request a neurology consultation, a palliative care consultation, or an independent ICU specialist review. This is not confrontational. This is standard practice, and any ethical ICU team should support this.

Next, you have the right to request more time. One week is not a long time in ICU terms. Many patients who are now living full lives were written off at one week, and I have countless of these examples, you’ll find countless of these examples on my blog here at intensivecarehotline.com. You’ll also find countless examples on our other website, intensivecareathome.com, and I can give you countless examples from my own practice when I worked in intensive care nursing for 20 years.

You can clearly say to the medical team, we are not ready to make this decision, we need more time and more information. This is completely legitimate and legal position and like I said in the beginning. You have rights to keep your dad alive. And what rights does the intensive care team have to kill your dad? Not many. Their legal obligations are to keep your dad alive, their moral obligations, their ethical obligations are to keep your dad alive.

The other question that you need to ask here is, where’s the urgency to kill your dad? Why is there no urgency to keep your dad alive and help him recover? So, flip that on its head and ask the right questions.

You also have the right to understand the full clinical picture.

1. What’s the primary diagnosis?
2. What’s the trajectory?
3. What does imaging show?
4. What does the neurologist say?
5. What are the reversible factors that haven’t yet been addressed?

You have the right to access all medical records. This is something I cannot stress highly enough. Get your father’s medical records, the nursing notes, the doctor’s notes, the imaging reports, the lab results, the list of medications, the ventilation observations. The vital sign observations, fluid balance charts, everything, and leave no stone unturned.

Because the picture that families are given verbally at the bedside is most of the time incomplete. For example, if you and I were at the bedside and I would listen to what they have to say, I would interject with some questions, and you would very quickly see that what they’re telling you is very incomplete and often only half truth.

When you see the medical records in full, you often see things that change the entire conversation. Intensive care teams are often only telling half of the story from my experience, unless you know what to look for, unless you know what questions to ask, and unless you know your rights.

Because here at intensivecarehotline.com, we help families obtain and review the medical records so that you’re making decisions based on accuracy on the full picture and based on facts and not on speculation, not just what the team has chosen to share with you. Because what the team is choosing to share with you, creates their own narrative, and right now their narrative is to kill your dad. That’s not a good narrative. Let’s change it.

So, here at intensivecareholine.com, myself and my team offer consulting and advocacy calls where we speak directly with you, of course, and also directly with the ICU team on your behalf and with you on the phone, and you will very quickly see that the dynamics will change in your favor because we ask questions you haven’t even considered asking.

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.

And when you and I get on a call with the doctors, you understand exactly what the medical records are telling you, or when we look at medical records. We ask the right clinical questions that the ICU team needs to answer before any withdrawal decisions are being made. Advocate for proper neurological assessment if it hasn’t been done so. Request more time in a way that is clear, firm, and clinically grounded. Help you understand whether the signs you’re seeing, like your father opening his eyes, are being properly assessed and documented.

This is not about false hope. This is about making sure that an irreversible life or death decision is not made prematurely and that every irreversible factor has been properly explored. That is your right as a family, and it is our job to help you exercise that very right. You can reach us at intensivecarehotline.com. There you’ll find options to book a consulting call with me, speak with our team by phone or via email, and submit a case for medical record reviews. Don’t wait in the ICU. Time matters greatly.

So, I also want to address something about the long-term that many families in your position don’t yet know is possible, but what might also shift your thinking, and it might shift how you look at possibilities and opportunities.

If your father does continue to improve, even slowly, but cannot be weaned off the ventilator or requires ongoing tracheostomy care or needs long-term ventilation support, whether that is invasive mechanical ventilation with a tracheostomy or non-invasive ventilation such as BIPAP or CPAP, there is an option beyond the ICU and beyond institutional care. With intensivecareathome.com, we provide specialist home-based intensive care nursing for patients who are ventilator dependent, tracheostomy dependent, or medically complex.

We provide third party accredited specialist intensive care at home nursing of this kind, and we have been doing this since 2012. Currently we’re operating all around Australia and all major capital cities, but also in all regional and rural areas, but we can also help clients in the US or in the UK privately. So, reach out to us at intensivecareathome.com for more information.

But what that means for your family, Renee is this: if your father is alive, if he’s showing signs of awareness, and if the ICU team is saying he cannot survive without long-term ventilation support, that doesn’t mean his only options are the ICU or withdrawal of treatment. There is a third path, there’s a path home. We support patients on invasive ventilation with a tracheostomy, patients on non-invasive ventilation, such as BIPAP (bilevel positive airway pressure) or CPAP (continuous positive airway pressure) without a tracheostomy, patients at home with a tracheostomy but no ventilation need, patients with complex nursing needs. We also provide palliative care, if need be, for patients and families who want to spend more time together in a dignified, loving environment, not in an ICU bed or in a hospital corridor.

If that’s something you want to explore, go to intensivecareathome.com and reach out to us there.

And here’s my final message to Renee and to every family watching this. Please do not let this decision be rushed, Renee. One week is not enough time to give up on your father, especially when you’re seeing signs of responsiveness. And instead of asking what your rights are to keep your father alive, flip that on its head and ask, what are the intensive care team’s rights to kill alive, to kill your father, to take someone’s life away. By reframing that question, you probably find the answers because they probably don’t have a lot of right to take someone’s life away. Not after one week, probably not even after month and not even after year, right?

So, trust your instincts, demand a full neurological assessment, access his medical records, request more time, and reach out to us at intensivecarehotline.com so that we can help you navigate this with clarity, with clinical expertise, and with the advocacy your father deserves.

And if you’re finding this video helpful, please subscribe to my YouTube channel, like, comment and subscribe, share the video with your friends and families, leave a comment below and subscribe to our newsletter, email newsletter at intensivecarehotline.com.

Every question like Renee’s is a question that thousands of other families in intensive care are silently asking, and together we can make sure no family faces the ICU alone and no family no family in ICU loses their loved one without making their own decision.

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.