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

Today, I want to talk about, again, one of the frustrations that readers share with us all the time and the frustrations that readers share with us all the time is, “Uncertainty about quality of life when their loved one is in intensive care.” I should say, uncertainty about any future quality of life and that is a real concern that needs to be addressed appropriately in ICU.

What I find missing in this debate about the quality of life is appropriateness of the discussion because what we hear over and over again when families in intensive care come to us and say, “Well, my mom, my dad, my brother, my sister, my spouse, whoever is in ICU and ICU is telling us that, (A) they’re not going to survive and, (B) if they do survive, they won’t have any quality of life and they need care for the rest of their life.” And the list of doom and gloom is very long that families are often given and it’s very important for you to do the fact checks here.

What is the fact checks? So, the fact checks are that approximately 90% of intensive care patients survive. So, that means the odds are in your loved one’s favor. That is Number 1.

Now, survival does not talk about quality of life. However, the reality is that most people who are alive, irrespective whether they’ve got a good or not so good quality of life, are happy to be alive.

Also, please keep in mind, quality of life is a perception. No more than that. Your perception about the quality of life is different than my perception of what’s a good quality of life. Your perception about what is unacceptable, or a good quality of life is different compared to the intensive care team’s perception of quality of life.

Well, your agenda and your goal are to get the best outcome for your critically ill loved one. The agenda often for intensive care teams is to empty their ICU bed as quickly as possible because the demand for ICU beds is just very high. The demand for ICU staff, doctors, nurses, respiratory therapist is very high because of the high demand for critical care.

So, you have to ask yourself, “What’s the agenda?” Well, your agenda is to get the best outcomes. Your agenda is to save your loved one’s life. Intensive care team’s agendas often once again, empty ICU bed, create a narrative that’s negative so they can keep the upper hand.

So, what that means is intensive care teams try to be negative or negative by default to create a narrative of doom and gloom so it’s easier for them to “sell you” on end of our situations, for example. Like it’s easier for them to “sell you” on a withdrawal of treatment.

So, I hope you’re following here that quality of life is nothing more, but the perception and quality of life is nothing more you deciding what is acceptable for you and for your family.

Now, also, intensive care teams often operate from a limited mindset. With services like Intensive Care at Home, a lot more is possible at home. With Intensive Care at Home, there’s people living at home with disabilities and they’re very happy to be alive because they’ve got the care and support that they need to live the quality of life that is possible for them and they’re very happy to be alive. The option was that they often would have died in ICU if a service like Intensive Care at Home hadn’t advocated for them to live a better quality of life instead of dying in ICU.

So, they’re going home on life support often with ventilation, tracheostomy, TPN (Total Parenteral Nutrition), for example, BIPAP (bilevel positive airway pressure), CPAP (continuous positive airway pressure), and live a good quality of life at home. So, have a look at intensivecareathome.com for more information there. So, I hope that helps.

That is my quick tip for today.

If you have a loved one in intensive care and you need help, go to intensivecarehotline.com with and 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.

Also, have a look at our membership for families in intensive care at intensivecaresupport.org. There, 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 and Intensive Care at Home related.

I also offer 1:1 consulting for families in intensive care. I talk to doctors and nurses directly, talk to you, talk to other family members. I can represent you and your family with intensive care teams so that you get better outcomes and make informed decisions. I have worked in intensive care for over 20 years in three different countries and I have worked as a nurse unit manager for over five years in intensive care as well.

Now, if you need a second opinion and the medical record review in real time while your loved one is in intensive care, please contact us as well. We give you a second opinion and look at medical records in real time. Again, we can combine that with talking to doctors and nurses directly. I also represent you in family meetings. If you need a medical record review after intensive care, if you have unanswered questions, if you need closure, or if you’re suspecting a medical negligence and you want to find out whether that’s happened or not, please contact us as well.

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 or what questions and insights that you have.

Thank you so much for watching.

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

Take care.