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Quick Tip for Families in Intensive Care: ICU Tells Me to Stop Life Support After Anoxic Brain Injury – What Should I Do?

“ICU tells me to stop life support after anoxic brain injury – what should I do?”

My name is Patrik Hutzel from intensivecarehotline.com, where we instantly improve the lives for 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 gets best care and treatment always, even if you’re not a doctor or a nurse in intensive care.

So, today’s question comes from Bonnie who says:

“Hi Patrik,

It is my concern that they have pumped my dad full of so many fluids and have not given him the medical care he needed in the beginning to survive this. I feel like they have taken away the chance he had to survive this episode because from the beginning they recommended pulling him from life support stating he had no chance, zero chance of recovering from this anoxic brain injury.

I’ve only asked for time to see if he could wake up, they do not want him there. They have not made me feel his life is not worth fighting for from the beginning. Yes, I know that they have done a lot here medically, but my fear has been that underlying decisions have been made to speed up the process of his decline and death.

One of those things being pumping him so full of so many fluids, not replacing a bad port on his right side that was clotting, then switching to 3-hour dialysis that was not good for him, waiting too long and allowing him to fill up with too much fluid.

After two cardiac arrests, they finally pull out the port on the left side that has worked just fine. They refused TPN (Total Parenteral Nutrition) for him. I’ve had comments from nurses right after he came out of sedation saying, ‘He would have done waking up already,’ which I feel he was trying to do at that time.

Other nurses have said they don’t like people in his condition hanging out here. The doctors stated we were not being pressured to remove life support, and that is not true. We are, they have told us that we should remove life support and give medications to keep him comfortable. They leave us for a few minutes and come back for our decision.

What should I do?

From, Bonnie.”

Bonnie, thank you for sharing this and unfortunately, what you’re describing is unfortunately very common in intensive care.

Families in intensive care are often told very early on after an anoxic brain injury that there is “zero chance” of recovery. But the reality is, nobody knows for sure what your loved one’s trajectory will look like in the days, weeks and months after cardiac arrest.

The intensive care team is looking at bed management, financial pressures, staffing, equipment resources, and pretty much all other resources in an intensive care unit. Patients with brain injury are often labelled as “not viable” early on, and then families are pressured into withdrawing life support under the guise of “comfort care.” Bear in mind, comfort care is no more than a euphemism for killing your family member, it’s no more than a euphemism for euthanasia, and euthanasia is still illegal.

You are absolutely right to be concerned about that fluid overload, which can worsen heart, lung, and kidney function, dialysis mismanagement, switching to short 3-hour dialysis instead of continuous dialysis, delays in inserting a proper port causing unnecessary setbacks, and refusal to start TPN, which is total parental nutrition, also known as IV (intravenous nutrition), which is critical if he can’t be fed via the gut. These are clinical decisions that directly impact your loved one’s chances of recovery.

So, let’s just say, dialysis management. Instead of doing a 3-hour dialysis, he could have been put on hemofiltration, which would have been a much smoother approach, a much gentler approach.

Now, fluid overload, again, daily fluid balances need to be done in intensive care over a 24-hour window. If his fluid balance is multiple liters positive and he has a heart condition, then that could weaken the heart and could worsen his condition, but it has to be measured and maybe there is a reason why they were giving him fluids.

Now, with the port, a port or a central line or a PICC line (peripherally inserted central catheter) is vital in ICU especially for critically ill patients, especially when TPN is needed as well. No TPN can be given without a port, a PICC line, a central line, a Hickman’s line. So, these are clinical decisions that directly impact your loved one’s chances of recovery and survival.

When nurses and doctors make comments such as, “He would have woken up already,” or “We don’t like people in his condition hanging out here,” it’s not only terrible language to use, it also shows the bias that it is not in your loved one’s best interest, that they’re not doing what’s in your loved one’s best interest, and that is extremely concerning.

So, the other thing that you have to keep in mind is if they’re telling you your dad won’t survive, but every day he is alive, you have to question their clinical judgment quite clearly. If you feel like they want to make you feel like his life is not worth fighting for, well, you’ve got to turn this around and say that you will fight tooth and nail for your dad. That’s how you should start this whole conversation.

Another thing you need to look at is, ask them verbatim. Where’s the urgency to kill your dad? Where’s the urgency to end someone’s life? Where’s the rush in that? It’s a question that families in intensive care need to ask in a situation like that.

You also need to ask, is your dad in a real or in a perceived end of life situation? What’s the difference? I’m glad you’ve asked. A real end of life situation is that no treatment, no surgery, no equipment, no medication, no nothing will save your dad’s life. He will die in the next few hours, and that’s a real end of life situation.

A perceived end of life situation is no more than there’s a perception that your loved one might die. But in the meantime, let’s go full steam ahead and try to save your loved one’s life and see what happens. There’s plenty of time to talk about end of life, keep that in mind. There’s plenty of time to talk about end of life. What’s the rush?

So, what should you do?

1. Do not give in to the pressure.

The ICU is trying to fast track a withdrawal of life support narrative. You are right to ask for more time, and they have no right to withdraw life support without your consent.

2. Insist on continued treatment.

Demand appropriate dialysis, fluid management, TPN or any other nutrition that he can tolerate in the best possible medical and nursing care.

3. Challenge the prognosis.

Nobody can predict neurological recovery at this early stage. Recovery from anoxic brain injury can take weeks or months. Also, you haven’t said that he had a CT (Computed Tomography) scan or an MRI (Magnetic Resonance Imaging) scan of the brain, or an EEG (electroencephalogram). Has that even been done?

4. Document everything.

Every comment from nurses, doctors that pressures you to withdraw life support prematurely and unnecessarily. Write it down, get their names, get their positions, and this creates accountability.

5. Get professional advocacy here from intensivecarehotline.com.

Because that’s exactly what we do here, we talk to doctors and nurses directly on your behalf, hold them accountable, make sure you are not pressured into making a decision you don’t agree with.

6. Get access to all medical records as quickly as possible.

I can tell you from my 25 years of experience as a critical care nurse in three different countries where I worked as a nurse manager for over 5 years in intensive care, that intensive care teams are often only telling you half of the story and you will see that very quickly when you look at the medical records. You will see it very, very quickly.

Also, get access to the hospital policies about withdrawal of treatment, get access to the state or national laws about withdrawal of treatment. You will find that they can’t withdraw treatment without your consent. They would be breaching their own policies, procedures, and the law, and you could start a criminal lawsuit potentially.

What’s the bottom line? You’re absolutely right, Bonnie. The ICU team is pressuring you to stop life support inappropriately when your loved one may still have a chance to survive. The system is set up to save resources, not necessarily to save lives when things get difficult and potentially time-consuming.

What you should do is hold your ground, put a line in the sand, get the right advice, get the right advocacy that we provide here at intensivecarehotline.com, and do not make a rushed decision. Time is your ally in intensive care, not your enemy.

If you’re watching this and you have a loved one in intensive care and you are under pressure to “withdraw life support,” go to intensivecarehotline.com and contact us on one of the numbers on the top of our website or send us an email to [email protected]. We can help you get control, power, and influence, make informed decisions, and fight for your loved one’s best chance for survival 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.

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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.