My name is 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, making sure your loved one always gets the best care and treatment, even if you’re not a doctor or a nurse in intensive care.

Today, I want to talk about one of the most emotionally charged and difficult decisions that families face when their loved one is critically ill in intensive care. When should you stop treatment in the ICU? 

The reason I want to answer this question today is that it is a question we get asked all the time at intensivecarehotline.com. And I want you to know right from the start — you may be getting told it’s time to stop treatment far sooner than it actually is. That’s exactly why you need to keep watching, reading, or listening to this right now. 

Is it a real end-of-life situation or a perceived end-of-life situation?

This is the most important distinction I want you to understand today, and it’s one that most families never get told. There is a massive difference between a real end-of-life situation and a perceived end-of-life situation in the ICU. 

A real end-of-life situation is when your critically ill loved one has genuinely exhausted all treatment options. All reversible causes have been investigated and ruled out and continued life support is no longer available. In this instance, I might even say myself that it might no longer be in their best interest, medically or ethically. These situations do exist and they are real, but they are also rare.  The reality is that 70 to 90% of intensive care patients survive, so the odds are in your loved one’s favor, and that’s why real end-of-life situations are actually not as frequent as you might think. 

A perceived end-of-life situation is something very different. This is when the ICU team — sometimes because of resource pressures, sometimes because of their own culture and biases, and sometimes genuinely out of care — comes to the family and says, “There’s nothing more we can do,” or “It’s time to think about withdrawing treatment,” when in reality, there are still options that haven’t been explored, questions that haven’t been asked, and treatments that haven’t been tried or optimized. 

I have seen this happen to hundreds if not thousands of patients and families over my career as a critical care nurse in the last 25 years, and as the founder of intensivecarehotline.com and intensivecareathome.com, and I want you to know it happens far more often than you would ever believe. 

Research consistently shows that the overwhelming majority of ICU patients survive and that ICU culture is one of the biggest drivers of treatment decisions, often coming before patient and family preferences. That means the hospital you happen to be in and the team that happens to be on can dramatically influence whether your loved one lives or dies. That is the reality of intensive care, and I will not sugarcoat it. 

So before you agree to stop treatment, before you sign any paperwork, before you let anyone withdraw life support, you need to ask the hard questions, and you need to make sure you have all the information. 

One of the first things I tell every family I work with is this — you must have access to all of your loved one’s medical records. Not a summary, not a verbal update, not what a doctor tells you in a five-minute family meeting. You must have access to the full medical records Why?  Because the medical records tell the real story. They show you what treatments have been tried and what treatments haven’t. They show you the trajectory of your loved one’s condition — whether things are improving, stabilizing, or deteriorating. They show you what the nursing notes say, what the doctor’s notes say, and whether the story you’re being told verbally matches what is actually being documented.  In many situations where families are being told it’s time to stop treatment, a thorough review of the medical records tells a very different story.

We have helped hundreds if not thousands of families at intensivecarehotline.com who have been told there was no hope. After simply one phone call to the ICU team, or after reviewing the records and consulting with the ICU team, we found that there were still viable options that hadn’t even been discussed with the family. We were able to turn situations around very quickly and as part of that, we have saved many, many lives for our clients in intensive care. 

You have the right to those medical records. Get them, read them, have them reviewed by us here at intensivecarehotline.com, because this is where we come in.

At intensivecarehotline.com, I offer one-on-one consulting and advocacy for families of critically ill patients in intensive care. I talk to you and your family directly, I review your loved one’s situation, and then — this is the part that makes all the difference — I talk to the ICU team directly with you.  I ask all the questions you haven’t even considered asking but absolutely must ask. I question the treatment plans. I challenge assumptions. I advocate for your loved one as an individual, not as a statistic or a bed number. I represent you in family meetings with the ICU team, and I can tell you right now — I would not go into a family meeting with an ICU team without clinical representation and without a written agenda, and neither should you. 

When families in intensive care come to us and say the ICU wants to stop treatment, one of the most powerful things we can do is to get on a call with the ICU team and simply start asking the right clinical questions  — or simply remind them that they cannot stop treatment or remove life support without your or your loved one’s consent. Doing so would be breaking the law, could be perceived as euthanasia, or could be perceived as murder.

In most cases, our input changes the entire conversation. Doctors respond differently when they know they are being questioned by someone with clinical knowledge who understands intensive care inside out. Suddenly, options that were not possibly become possible. Treatments that were not indicated get a second look. 

If your loved one is in the ICU right now and you are being told it’s time to stop treatment, please call us or email us at intensivecarehotline.com today. Do not wait. Don’t sign anything. Don’t agree to anything. Call us first. 

What if Your Loved One Can’t Be Weaned Off the Ventilator? There Is a Viable Long-Term Option.  Here is something else that most families — and honestly, many ICU teams — don’t know about or don’t explore, which is long-term ventilation at home with Intensive Care at Home. 

If your loved one is on a ventilator, whether that’s invasive ventilation with a breathing tube, or they need a tracheostomy because they can’t be weaned off the ventilator, or they need non-invasive ventilation such as BiPAP or CPAP, this doesn’t automatically mean they have to stay in ICU forever, and it certainly doesn’t mean the only option is to withdraw treatment and let them die.

Our sister service at Intensive Care at Home.com provides specialized home care nursing for ventilated adults and children with tracheostomies and their families as a genuine alternative to a long-term stay in intensive care. We look after patients who need long-term invasive or non-invasive ventilation in the community, or who need tracheostomy care in the community without ventilation, because all of those conditions need 24-hour intensive care nursing. We keep our clients out of ICU and at home, predictably and permanently, with 24-hour intensive care nursing at home. And we give our clients real quality of life, including their families.  This includes patients who cannot be weaned off the ventilator, have a tracheostomy and require ventilator support, have a tracheostomy without ventilation, or might need palliative care but patients and families want palliative care done at home with their loved ones around rather than in ICU. It also includes those with long-term conditions like neuromuscular disease, spinal cord injuries, or chronic respiratory failure. 

If the ICU is talking about futility of treatment or withdrawal of life support and your loved one is on a ventilator, please ask about long-term ventilation with Intensive Care at Home before you make any decisions. This option exists, it works, and it gives your loved one and your family quality of life that nobody ever told you was possible — instead of dying in ICU. 

Don’t Make This Decision Alone and Don’t Make It Under Pressure.
I know how overwhelming this is. I know how much pressure families feel in ICU family meetings. I know how difficult it is to push back against a team of doctors and nurses who are telling you there is no hope. 

But here’s what I also know after decades of working in critical care nursing — families who ask questions, who get advocacy, who won’t take no for an answer, who get the medical records reviewed by professionals here at intensivecarehotline.com, and get a second opinion — these families in intensive care get much better outcomes. Not always, but far, far more often than the families who simply accept what they’re told.

You are not a doctor, you are not a nurse, but you are the most important person in your loved one’s world right now, and you have every right — legally, morally, and ethically — to ask questions, to challenge decisions, and to demand that every option is explored before a life is ended.

This is what we are here for at intensivecarehotline.com.
You should also always ask yourself the question — where’s the rush to end your loved one’s life? Where’s the urgency? Why is there no urgency to save your loved one’s life? 

You should not make decisions today that you may regret in 12 months’ time. Ending your loved one’s life today, you may regret in 12 months’ time, but giving your loved one a chance — even if it fails — you may not regret, because you know you have left no stone unturned. Think about this very carefully.  You also need to understand that a few days in ICU, and sometimes even a few weeks in ICU, is not a long time. Sometimes it takes weeks, if not months, for someone to recover.

Here Is What You Should Do Right Now.  If your loved one is in ICU and you’re being told it’s time to stop treatment, here is what I want you to do: Don’t sign anything. You have time to get more information — take it.  Request access to all medical records immediately — nursing notes, doctor’s notes, lab results, medication list, ventilation charts, imaging, fluid balance charts, simply everything.

Call or email us at intensivecarehotline.com so we can review your situation and, if needed, get on a call with the ICU team as soon as possible, directly with you and on your behalf.

Ask for long-term options such as Intensive Care at Home.com when it comes to ventilation and tracheostomy care at home, before any decisions are made. 

Make sure you have a written agenda before you go into any family meeting with the ICU team and have clinical representation with you at all times. Call us on one of the numbers at the top of our website at intensivecarehotline.com, or send us an email to [email protected] with your questions.

We also have a membership for families in intensive care that you can become a member of.

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

And because our advice is absolutely life-changing, right? 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 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 the best care and treatment always. And 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.

And that’s why I do one on one consulting and advocacy over the phone, Zoom, WhatsApp, whichever medium works best for you. And 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. And 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, so, 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 e-books and 21 videos that I’ve personally written and recorded. And 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 the best care and treatment always.

And all of that you get at intensivecarehotline.com. Call us on one of the numbers at the top of our website or simply send us an email to support at 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, share the video with your friends and families, and comment below what you want to see next, what questions and insights you have from this video.

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

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.