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

I’m a critical care nurse with over 25 years of critical care nursing experience in three different countries where I worked as a nurse manager for over five years in the ICU, and where I’ve been consulting and advocating for families in intensive care here at intensivecarehotline.com since 2013. You can check out our testimonial section and our podcast section with our clients. We have saved many lives for our clients in intensive care.

So today I have an urgent question from Terry who says,

“Hi Patrik, 

My mom is in the ICU intubated, ventilated, awake but having intermittent apnea. She doesn’t follow commands and has intermittent jerking movements with stimulation. She has been off sedation. EEG findings show diffused brain slowing with generalized periodic discharges, but no seizures. Both the CT head and ammonia levels are normal. The ICU team is rushing us into an end-of-life decision for mom and consent to come off the breathing tube tomorrow. Mom is probably not ready yet and may die unless she gets a tracheostomy, and we as a family are certainly not ready yet to lose our mom. 

Please, Patrik, we need your expert advice urgently. Can my sister and I call you tonight? 

Thank you 

from Terry.”

This is obviously a question that I have already answered with Terry over the phone, but it is a very good question to answer here for all of our viewers.

I want to start, Terry, by saying, I hear you. I hear you loud and clearly. I know that I’ve spoken to you on a number of occasions with you and your sister, and I know you were frightened, and you love your mom, and you’re being asked to make a life-or-death decision in what feels like 24 hours. It’s very rushed. It’s very inappropriate because that is an enormous amount of pressure. And in my experience, with over 25 years of working in ICUs and in Intensive Care at Home, I can tell you that pressure doesn’t always serve your mom’s best interests.

In this blog post and video today, I’m going to walk you through everything that you need to understand about your mom’s situation, the medical findings, the treatment options, what a tracheostomy really means, why you must get access to all medical records, and how my team and myself at intensivecarehotline.com can help you advocate for your mom right now, so she’s not going to pass away prematurely and unnecessarily.

Let’s go through this step by step, Terry, shall we?

Number one, what does it mean that your mom is intubated, ventilated, awake, but having intermittent apnea?  Apnea means pauses in breathing.  This combination of findings is actually more encouraging than it might seem on the surface, and that is exactly why rushing to an end-of-life decision right now concerns me. It’s highly inappropriate that they are rushing towards an end-of-life decision.

Let me break this down. Intubated and ventilated, your mom has a breathing tube and a tracheal tube in place, and a ventilator is breathing for her, at least in parts. This is a temporary measure. It doesn’t mean she will be on a ventilator forever.

Awake. The fact that your mom is awake off sedation and off opiates is clinically significant. It tells us her brain is not in a deeply compromised state. Patients who are awake, even if confused or not following commands, are in a fundamentally different category from those who are deeply comatose.

And then there’s the intermittent apnea. Apnea means she’s not breathing consistently on her own. The ventilator is catching these episodes. This could be related to her neurological picture, which we’ll discuss next. Medications still clearing her system, metabolic factors, or respiratory muscle fatigue. The keyword is intermittent. It is not constant. That matters a great deal.

Not following commands. This is a neurological concern, but it is not the same as being brain dead or in a persistent vegetative state. There are many reasons why a patient may not follow commands in the ICU: sedation and opiates still wearing off, confusion, encephalopathy, delirium (209), fear, and pain. Many of these are reversible. Intermittent jerking with stimulation. These are likely myoclonic movements, brief involuntary muscle jerks triggered by stimulation. The EEG (Electroencephalography) has already confirmed there are no seizures, which is very reassuring. Myoclonus in the ICU setting can have multiple causes, many of which are treatable.

Here’s what’s important: the fact that your mom is awake and the EEG shows no seizures is a genuinely positive sign. An ICU team that is rushing to extubation and end of life decisions within this clinical picture warrants serious scrutiny. And you should be asking two very important questions here, Terry.

The first question is, what’s the rush to kill your mom? Where’s the urgency to kill your mom?  And the second question is, why is there no urgency and no rush to help your mom?

Think about that. Ask those questions to the ICU team and listen to what they have to say.

Next, number two, what do the EEG findings mean? Diffuse brain slowing and generalized periodic discharges.  The EEG, which also stands for an electroencephalogram, measures electrical activity in the brain.

Let’s look at what Terry’s mom’s EEG is actually showing.  Diffuse brain slowing. This means the brain’s electrical activity is slower than normal across both hemispheres. This is a very non-specific finding.  It tells us the brain is not functioning optimally, but it doesn’t tell us why, and it doesn’t tell us whether the cause is reversible or irreversible.

Diffuse brain slowing can be caused by metabolic disturbances, even mild ones not reflected in a single ammonia level. Medication effects, opiates, benzodiazepines, sedatives, and anti-epileptics such as phenytoin or Keppra. Infections or sepsis, sleep deprivation and ICU delirium or ICU psychosis, liver or kidney dysfunction, thyroid abnormalities, hypoxia, even a prior episode of low oxygen, nutritional deficiencies such as thiamine, vitamin B1, autoimmune encephalitis, an underdiagnosed but treatable condition.

Generalized periodic discharges, GPDs, are repetitive patterns on the EEG that occur across both hemispheres. They sit in what neurologists call a Gray zone between clear seizure activity and clearly benign patterns. They can be associated with serious neurological conditions, but they can also occur in the context of metabolic disturbances, and they do not automatically mean the brain is irreversibly damaged.

The EEG has confirmed no seizures. This is reassuring. This picture, without clinical seizures, is a reason to investigate further, not a reason to immediately end your mom’s life. It is highly inappropriate.  Key questions to ask the ICU team: Has your mom been fully evaluated for reversible causes of encephalopathy? Has autoimmune encephalitis been ruled out? Has thiamine deficiency been excluded? Has a formal neurology consult been completed?

Number three, CT (Computed Tomography) head normal and ammonia level normal. What does that tell us?  These are two more reasons why I’m concerned about the rushed timeline being presented to Terry and your sister about wanting to end your mom’s life.  She has a normal CT head scan, which means there is no evidence of major structural brain damage, no large stroke, no bleed, no tumour on CT. This is a very important finding. If the CT were showing massive irreversible structural damage, the clinical picture would be very different.  Normal ammonia level. Elevated ammonia is a marker of hepatic encephalopathy, a cause of altered consciousness related to liver dysfunction. The fact that ammonia is normal helps rule out this specific cause. However, it doesn’t rule out all metabolic causes of encephalopathy. There are many other metabolic and toxic causes that a single ammonia level cannot capture.  Taken together, normal CT and normal ammonia are findings that argue for a continued investigation, not for a premature withdrawal of treatment.

Let me repeat what I said earlier. You have to ask the ICU team: Why is there such a rush to end your mom’s life? Why is there such an urgency to end your mom’s life? Why are there no rush and no urgency to help your mom and improve her situation?

Number four, why is the ICU team rushing to an end-of-life decision?

This is the question I get asked most often by families who reach out to me. And it is one of the most important questions you can ever ask.

I want to be very clear. The question you should be asking the ICU team is: Why is there such a rush to end your mom’s life? Why is there such an urgency to end your mom’s life? Do they need an ICU bed for other patients? Do they want to save money? Are they potentially not having enough staff?

Whilst most ICU clinicians are hardworking and dedicated professionals, but the system they work within creates pressures that do not always align with what families and individual patients need. Some of the reasons ICU team may move quickly towards end-of-life decisions include, but are not limited to:

Bed pressures. ICUs are chronically under-resourced, understaffed, and there’s constant pressure to free up beds.

Prognostic uncertainty. When the trajectory is unclear, some teams default to withdrawal of treatment rather than continued treatment.

Communication breakdowns. The family’s wishes and goals may not have been fully explored or understood.  A belief that the patient’s quality of life going forward would not be acceptable for the ICU team, but this is no more than a value judgment, an inappropriate value judgment, not a medical fact.  Institutional culture. Some ICUs have a more aggressive approach to withdrawal of treatment than others.

None of these are reasons to remove your mom from life support and the ventilator before you want to make that decision, whilst your mom can’t make decisions, and before you have any opportunity to fully understand her situation, explore all treatment options and advocate for her wishes.

You have the right to say no. You have the right to ask for more time. You have the right to seek a second opinion. You have the right to understand every single piece of clinical evidence before consenting to any end-of-life decisions.

Number five, what are the real treatment options for your mom right now, Terry?  Let me be direct. Based on what you have shared, there are several legitimate clinical options that should be on the table before any conversation about withdrawal of treatment.

Option one, continue mechanical ventilation and investigate further. Your mom’s clinical picture—awake, no seizures on EEG, normal CT, normal ammonia—suggests that the underlying cause of her neurological state has not yet been fully identified or treated.  Before withdrawing life support, the ICU team should be actively investigating:

Full autoimmune encephalitis panel, Comprehensive metabolic screening including thyroid function, cortisol, B12, folate, and thiamine, Infectious screen, CSF (cerebrospinal fluid) from a lumbar puncture, if not already done, to rule out viral or bacterial encephalitis. Review all medications and their clearance times, Formal neurology and neurophysiology review

Serial EEG monitoring over 24 to 48 hours to track trends

Next option, a tracheostomy, a bridge, not an endpoint.

Terry, you have already identified this, and you’re right to consider it. A tracheostomy is a surgical procedure where a small opening is made in the front of the neck and a tube is inserted directly into the trachea, also known as windpipe. It replaces the endotracheal tube and has several important advantages in this situation.

It is more comfortable for the patient than an endotracheal tube. It allows for reduced sedation and greater patient wakefulness. It makes weaning from the ventilator easier over time. It reduces the risk of long-term voice and airway damage. It allows your mom to communicate and participate in rehabilitation. It buys time, time that may be critical for the neurological picture to declare itself.

A tracheostomy is not a death sentence. Many patients with tracheostomies are successfully weaned from the ventilator over weeks or months, and for those who cannot be weaned, it opens the door to long-term home ventilation with Intensive Care at Home, which I will discuss shortly.

Next option, formal neurological reassessment. Given the EEG findings and the CT scan, a formal inpatient neurology review should be considered mandatory before any withdrawal of treatment decision. If the current ICU team does not have strong neurological support, transfer to a center with dedicated neuro ICU capability may be appropriate.

Next option, goals of care conference with full family participation. Any end-of-life decision should be made in the context of a properly facilitated goals of care conversation, not a rushed bedside conversation under time pressures.

The only time pressure, like I said, over and over again now, is to help your mom to get better and improve.

This means:

All decision makers are present, the clinical team clearly explains the diagnosis, prognosis, and uncertainty.  The family’s values and the patient’s known wishes are central.  There is no pressure to decide within a specific time frame.  The option of ongoing treatment is presented equally alongside withdrawal

Let me come to my next point, Terry. Why you must have access to all medical records.  I want to be very direct with you here, Terry. One of the most powerful things you must do for your mom right now is to request access to all of her medical records.

This includes:

All nursing and medical progress notes, all investigative results, blood tests, imaging reports, EEG results, Ventilator settings, respiratory therapy notes, ICU nursing notes, and medication administration records

all specialists consult notes, any goals of care documentation, or advanced care planning documents, all ventilation parameters, all vital signs, and fluid balance charts.

Why does this matter? Because you cannot effectively advocate for your mom if you do not know what the clinical team knows. Medical records are not just for doctors. They belong to your mom and her family, and in most jurisdictions, you have a legal right to access them.  When me and my team at intensivecarehotline.com review medical records for families and with families, we are very often able to identify:  Investigations that have not been completed or followed up on, discrepancies between what the family has been told and what the records show. Critical clinical findings that support a more optimistic prognosis than the team has communicated to you. Opportunities to escalate care or request second opinions

Action: Ask the ICU charge nurse or nurse manager to get access to your mom’s complete medical records today. Do not wait. Do not hesitate. The more information in your hands, the better positioned you are to advocate.

As a bonus tip: Getting access to the medical records should be no more complicated than getting access through a username and a password, through a website browser, or through an app.  Any delays, you should be very worried about what they have to hide.

Now, how a consulting call with myself and the intensivecarehotline.com team can help you.  You asked, Terry, if you and your sister can call me tonight. The answer is absolutely yes, and I know we’ve already spoken.

At intensivecarehotline.com, my team of critical care nurses and I provide expert ICU family consulting and advocacy services. We work with families all over the world, including families in exactly your situation, where an ICU team is moving towards withdrawal of treatment and the family believes their loved ones deserve more time, more options, more optimism, and more positivity.

I can confidently, very confidently say here that we have saved many lives with our consulting and advocacy. You can verify that on our testimonial section or on our podcast section, where we have done client interviews.

Here’s how we can help:

We review medical situations with you in detail, explain what the findings really mean without any bias, and we prepare you with the right questions to ask the ICU team, or we ask them on your behalf—questions that demand clinical accountability.

We remind intensive care teams of your rights as a family and your mom’s rights. We help you understand your rights. We break them down, including the right to refuse consent for withdrawal of treatment. You have a right not to consent to killing your mom. Let me repeat that: You have a right not to give consent to let them kill your mom. Keep that in mind at all times.

We review your mom’s medical records with you and identify anything that may have been overlooked, and we hold the ICU team accountable.

We connect you with specialist second opinions where appropriate.

To book a call with me or speak to us urgently, visit intensivecarehotline.com or call us on one of the numbers on the top of our website at intensivecarehotline.com or simply send us an email to [email protected].

Let’s now look at Intensive Care at Home.  Intensive Care at Home is a long-term pathway for ventilator-dependent patients. If your mom cannot be weaned from the ventilator, whether that is for weeks, months or indefinitely, that doesn’t mean she has to stay in ICU forever.   With Intensive Care at Home, and you can find more information at www.intensivecareathome.com, we are fully accredited for Intensive Care at Home nursing, and we support patients who require: Long-term invasive mechanical ventilation with a tracheostomy, Non-invasive ventilation such as BiPAP or CPAP, Tracheostomy care with no ventilation management in the home 24 hours a day, for adults and for children

Palliative care with or without ventilation support for comfort

Complex nursing care that cannot safely be provided at home without specialist expertise

With Intensive Care at Home, we’re sending critical care trained nurses into patients’ homes 24 hours a day whenever needed and we’re providing a genuine alternative to a long-term stay in intensive care.  With Intensive Care at Home, we’re currently operating all around Australia in all major capital cities and in all regional and rural areas, in all states and territories. But even if you’re watching this in the US, in the UK, in Canada, reach out to us because we can help you there privately.

There’s a common misconception that adults and children in ICU who are ventilator or tracheostomy dependent must remain in hospital forever. This is certainly not true.  Germany has been pioneering this model since the late 1990s, and we continued it in Australia since 2012 very successfully. Germany and Australia have well established home ventilation models for Intensive Care at Home for decades now, with tens of thousands of patients living at home on ventilators, with tracheostomies, with 24-hour Intensive Care at Home nursing.

And in Australia, with Intensive Care at Home, we’re leading that change.

For families like Terry’s, this matters enormously. If your mom ultimately requires a tracheostomy and long-term ventilation, that doesn’t mean she loses her life as she knows it. With the right support, she may be able to come home, be surrounded by family, and live a meaningful life outside of an ICU.

If you’re thinking about long-term care options for your mom, visit www.intensivecareathome.com and call us today on one of the numbers on the top of our website.  So, what should Terry and her sister do right now?  I want to leave you with a clear action plan because when you are in crisis, clarity is key.   Do not consent to withdrawal of treatment or extubation until you have had time to fully understand the clinical picture and your options.  Request an urgent formal meeting with ICU consultants and the neurology team together, if possible.  Request access to all of your mom’s medical records today. Ask the nurse in charge how to do this.

Ask specifically: Why is there a rush to end my mom’s life? Why is there no rush to help my mom to get better?

Ask that very question and watch for the response.  Ask also: Has autoimmune encephalitis been ruled out? Has a full metabolic and toxicological screen been completed? What is the trend in the EEG over time?  Ask the ICU team to document in writing the clinical basis for their recommendation to withdraw treatment.

And remind them that you have rights and that you do not give consent to let your mom die, and that you request every treatment for your mom, best care and treatment for your mom, not to end her life. And ask them: Where’s the rush? Where’s the urgency to kill my mom? And ask them: Why is there no rush and urgency to help my mom to stay alive?

Call intensivecarehotline.com now. Let us review the situation with you, prepare you for these conversations, and advocate with you on your behalf.

You are not being unreasonable by asking these questions. You are not being unreasonable by asking to keep your mom alive and give her best care and treatment. You are being a responsible daughter and advocate for your mom. This is exactly what she needs right now.

Terry’s mom is in a genuinely uncertain clinical situation, not a definitely hopeless one. She is awake. Her CT is normal. Her ammonia levels are normal. The EEG shows no seizures. These are not the findings of a patient for whom all hope is lost.

The ICU team’s urgency around end of life decisions deserves scrutiny. There are legitimate treatment options that should be explored, including continued investigations for reversible causes of encephalopathy, a tracheostomy to buy time and improved comfort, and a formal neurology review.

Most importantly, Terry and your sister have the right to be fully informed, to access all medical records immediately, to seek second opinions, to say no to withdrawal of treatment, and to say yes to prolonging life. You’re not ready to give consent to let your mom die, but you are ready to let your mom live.

At intensivecarehotline.com, this is exactly what we do all day every day. We help families in intensive care like yours navigate the most critical moments in their loved ones’ lives with expertise, compassion, and a deep commitment to patient advocacy.

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.

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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.