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Quick Tip for Families in Intensive Care: Patient & Family Advocacy Saved a Life in ICU After Hospital Wanted to Withdraw Treatment After Stroke

“Patient and family advocacy saved a life in ICU after hospital wanted to withdraw treatment.”

My name is Patrik Hutzel from intensivecarehotline.com with another real success story that shows just how critical family and patient advocacy is in intensive care units and how quickly hospitals can jump to decisions and conclusions that may actually not be in the best interest of a patient or a family.

Today, I want to share the story of John. I’ve changed all names in this blog post to obviously make sure we are not identifying any identities here.

So, I want to share the story of John and his incredible family who refused to give up, despite being told by the ICU team at an ICU that he wouldn’t survive, would never speak, and that he would most likely die in ICU just in a few days. Only days after John was admitted to ICU with a severe brain injury and hemorrhagic stroke, the family was already being pressured to withdraw treatment. Doctors were bluntly asking if John would want to live like this while painting a bleak and hopeless picture, no speech, paralysis, immobility, and no quality of life.

This was not only premature, which is what I told the family right from the start when they contacted me, it was also emotionally damaging and draining to the family who was still processing the shock of his condition. But instead of caving to the pressure, John’s sister and John’s wife took action. John’s sister wrote a powerful letter of complaint to the hospital, clearly outlining the lack of empathy, the poor communication and the lack of structured updates from the ICU team. She also pushed back on the hospital’s refusal to allow light therapy, something the family had researched and believed could help support John’s neurological recovery.

So, I actually want to read out this letter because I think, any family in ICU can almost take that letter and email and copy and paste and apply to their situation, and also get a good outcome.

So, John Cicero,

“To whom it may concern,

My name is Kristen and I write this letter on behalf of my sister-in-law, Natasha, and our family regarding the treatment and communication we have received in relation to my brother, John, who’s currently in the intensive care unit, and I’m not going to name the hospital here.

We are deeply concerned about the overall approach and lack of empathy shown by some of the ICU staff and doctors.

Within just the second or third day of John’s admission, discussions were already being held about the possibility of ending his life. These conversations were presented with an overwhelming focus on the negative, painting a picture of paralysis, no speech, no mobility, without even an ounce of hope or balance.

We were confronted with the question, ‘Do you think John would want to live like this?’ This line of questioning was distressing and frankly, premature, especially considering the emotional state of our family at that time.

This experience left us feeling uncertain, insecure and unsupported. As a result, I felt compelled to engage a private ICU nursing consultant and advocate, which is myself, to help interpret the medical situation and provide clear, independent medical and nursing advice, something we believed should have been delivered with more transparency and structure by the hospital team.

To date, medical updates have only been provided during ad hoc meetings, without any agenda or adequate preparation, which places significant strain on the family.

This lack of structure and consistency has made it difficult for us to stay fully informed and involved in John’s care.

As a result, I will be seeking direct access to John’s medical information through the appropriate channels, including a Freedom of Information (FOI) request, to ensure we have a comprehensive understanding of his condition and care.

We understand and accept the severity of John’s brain injury, and we do not take lightly the reality of what his future life might entail. However, the decision regarding John’s care, especially around life sustaining measures, is one that rests with his wife and immediate family.

We ask that this be respected at all times, and that John’s time in the ICU be guided by a commitment to preserving life and ensuring his comfort, rather than overshadowed by defeat and negativity.

Furthermore, I wish to raise a formal request regarding the use of light therapy in John’s room. I have conducted thorough research and provided evidence including websites and studies, which outlined the benefit of red light therapy in supporting neurological recovery, calming inflammation and improving overall well-being. It is a non-invasive therapy and could offer some comfort and healing, however, minimal.

We have been advised that this may not be permitted in John’s room, but no clear reason has been provided. We respectfully ask that this decision be reconsidered with an open mind, particularly as we explore every possible avenue, both medical and holistic, to support John’s healing journey.

We know that to many, John may be one of many patients, but to us, he’s a father, son, brother, and husband. We’ve been told bluntly that he will likely die in ICU and never return home. While we understand the reality of the situation, we are also seeking compassion, understanding, and the glimmer of hope, something that we feel has been missing from the hospital’s approach.

We are not asking for miracles. We are asking for empathy, for space to hope, and for the hospital to walk this difficult path with us, not ahead of us.

We look forward to your response.”

So, obviously this powerful letter of complaint to the hospital clearly outlining the lack of empathy, the poor communication, and the lack of structured updates from the ICU team, push back on the hospital’s refusal or to allow light therapy, something the family had research and believed could help support John’s neurological recovery.

At the same time, the family engaged me at intensivecarehotline.com for independent advocacy and consulting. I attended family meetings in the ICU, provided expert advice, and ensured the family had the clinical understanding they needed to push for what was right: time, continued treatment, and a tracheostomy.

Because by the time the family started talking to me, the ICU never mentioned the tracheostomy as an option, the only option they presented to the family was end of life. So by the time they started talking to me, I said to them, “Well, has the hospital told you about a tracheostomy?” A tracheostomy had never mentioned, and that really was the lifesaver.

Initially, the ICU refused to do a tracheostomy, but with ongoing pressure and also with ongoing enlightenment and education, and also with every day that John continued to live, their argument weakened that he would just die.

So, what was the outcome? John received a tracheostomy, which the ICU initially resisted. Not only that, but he began to show incredible signs of recovery. He’s now more alert, has opened his eyes, started trying to mouth words and even had some ice cream, a moment that seemed impossible just a few weeks ago. The other thing that he did is he pulled out his nasogastric tube.

Well, again, that is after ICU team saying, “He will never move his arms or his legs.” He’s now also started to get mobilized every day in a chair, which is also good, a very good sign. So with him pulling out his nasogastric tube, of course, that’s not so good but it’s also a sign that he’s aware of what’s going on and he’s aware of his surroundings. He still needs the nasogastric tube for nutrition, but it’s still a very good sign.

This is yet another case that proves ICU teams can and do get it wrong when they make premature predictions about life and death, and also about premature predictions and judgments about quality of life, because it’s just a perception.

It shows, once again, the power of strong advocacy from family and from professionals like us when hospitals are ready to give up too soon. We continue to see this pattern every day. ICU teams often push for end-of-life decisions within the first few days of a brain injury or ventilator dependency, but recovery takes time. Brain injuries especially are notoriously unpredictable. Many patients have made recoveries weeks or even months after being written off by their treating teams.

At intensivecarehotline.com, we take our mission very seriously because we help families, just like yours, push back, ask the right questions, understand your rights, and keep fighting and advocating when hospitals and ICUs in particular, stop caring.

So, if you’re in a similar situation, if you feel like the hospital is pressuring you prematurely into making life or death decisions too early that you’re simply not ready to make, reach out to us. You don’t have to go through this alone, and your loved one deserves every chance at life and recovery.

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.

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.

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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.