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Quick Tip for Families in Intensive Care: Should I Allow ICU Doctors Take My Baby Boy Off Life Support or Allow for a Tracheostomy & PEG (Percutaneous Endoscopic Gastrostomy) Tube?

Today, I have an email from Andromeda who says,

“Hi Patrik,

Should I allow ICU doctors take my baby boy off life support, or should I allow surgery for a tracheostomy and PEG (Percutaneous Endoscopic Gastrostomy) tube? He’s got global anoxic brain injury.

From, Andromeda.”

My name is Patrik Hutzel from intensivecarehotline.com, and this is another quick tip for families in intensive care.

So, let’s look at Andromeda’s email in detail.

Andromeda, I’m so sorry to hear what you are currently going through with your baby boy. I’m sorry you’re facing this because no parent should ever have to make such an unbearable decision or being in a situation like that. Deciding whether to continue life support, including surgery for a tracheostomy and PEG tube versus letting your baby boy go is deeply personal, and it’s very complex. It’s not a black or white answer.

So, let’s give you some very important considerations that will help you as you talk with doctors, loved ones, and obviously with ourselves here at intensivecarehotline.com.

Number 1, understand the medical prognosis clearly. Ask the doctors for specifics. What parts of the brain are affected? Are there any signs of brain stem function? Do they see any possibility of recovery, even partial? What is the expected quality of life? Will your baby be able to breathe, eat, or interact in any way?

Expected quality of life is just that. It’s an expectation, and quality of life is very subjective. It is not something that can be objectively measured, and for you, quality of life might be you can be with your baby and your baby can be with you. That might just be the quality of life that you might be satisfied with. It is not up to intensive care teams to make that call, it is up to you to make that call.

Next, has an MRI (Magnetic Resonance Imaging) been done? If so, request a second opinion from a pediatric neurologist outside of your current ICU.

Next, what does a tracheostomy and PEG tube mean? Generally speaking, these procedures are not a cure, but they prolong life. There are ways to keep the body alive while the brain heals, if the brain can heal. But even if it can’t heal, it still would maintain the status quo, and it will give your baby boy time to recover and heal.

If you choose the surgery, your baby boy could be transferred to a service like Intensive Care at Home, and you can check out more information at intensivecareathome.com, or he could go to a pediatric rehabilitation place before going home with Intensive Care at Home if he can’t be weaned off the ventilator and the PEG tube. It’s definitely a path that allows more time to see your baby if your baby improves, however small steps he might take.

Next, consider your values and faith. Do you believe in giving time for a miracle? Or do you feel this would prolong suffering without hope? Do you believe your baby boy is suffering? That is a very important consideration. Some parents might say, “As long as there’s a heartbeat, there’s hope.” Others say, “I don’t want my child to suffer, just to use a machine to keep him alive.” Either choice is a choice of love. You’re acting out of compassion, not out of neglect.

Next, request a family meeting with the intensive care team. They can help you guide decisions based on your values. Ask what happens if you wait another week before deciding, is it possible to reassess them? Reality is that if you do wait another week, chances are that your baby boy will need sedatives and opiates, which also have very negative side effects.

I do believe from my extensive experience that you, giving consent to a tracheostomy and a PEG tube, will eliminate suffering for your baby boy, and there’s still plenty of time to talk about end of life if a tracheostomy and a PEG tube are not helping to help your baby boy recover. Then, you could potentially start the talks to palliative care, if you want to go down the track of end of life. But again, there’s plenty of time to talk about end of life. You also should be asking yourself, where’s the rush or the urgency to kill your baby boy or to let him go?

Next, your right to a second opinion. You can transfer your baby to another hospital for re-evaluation, especially if you feel rushed or pressured. You also have the right to request an ethics consult if the medical team and the ICU team is pushing too hard towards end of life. I would not bank my money necessarily on an ethics consult because they are often employees of the hospital. They will often decide what’s in the best interest of the hospital, not necessarily what’s in the best interest of the patient, just keep that in mind.

If you want, I can help you create a list of questions to ask the doctors or draft a message for a second opinion request. I can do that in another video, just let me know.

Whatever you decide, we are here to help you through it. Because it is important that you think this through very carefully and that you don’t rush decisions today that you might regret in 12 months’ time. My advice is make decisions today that you don’t regret in 12 months’ time because that could be the worst out of all. Because if you make a decision today that you let your baby boy go, you might regret that, and there’s no return from that. Please keep in mind that life is sacred, and whatever decision you make will be the right one, but get informed first.

I would also ask them, what does it take to get your baby boy off the ventilator without the tracheostomy?

In any case, I hope that helps.

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 critical 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 for our clients in intensive care. You can verify that if you go to our intensivecarehotline.com testimonial section at intensivecarehotline.com or if you go to intensivecarehotline.com podcast section where we have done client interviews. Because our advice is absolutely life changing, that’s why we help you to improve your life instantly, make informed decisions, have peace of mind, control, power, and influence making sure that your loved one gets best care and treatment always.

That’s why you can join a growing number of members and clients for consulting and advocacy that I offer here one on one consulting and advocacy over the phone, Zoom, WhatsApp. Because once again, our advice here is absolutely life-changing. When I talk to you and your families directly, I hand hold you through this once in a lifetime situation that you simply cannot afford to get wrong. I also talk to doctors and nurses directly on your behalf, and when I do that, I ask 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 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. 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 videos and 21 e-books that only are exclusively accessible to our members. All of that will help you to 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 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. You will get notification for 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.

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