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

Here at intensivecarehotline.com, 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 always gets the best care and treatment, even if you’re not a doctor or a nurse in intensive care.

I have worked in critical care nursing for over 25 years in 3 different countries, where I worked as a nurse manager for over 5 years in ICU, and I’ve been consulting and advocating for families in intensive care since 2013 here at intensivecarehotline.com. I can confidently say that we have saved many lives for our clients in intensive care, and you can verify that on our testimonial and podcast section where we have collected testimonials, including interviews with our clients.

I have received a message from Simone who says:

“Hi Patrik, 

Please help. They want to pull the plug on my husband. I know my husband is responding. They gave him a great number of sedatives for the brain bleed from a fall. He had a seizure, and I know it takes time, but they don’t want to wait. They want him to go to hospice and end-of-life care. They have to give him time. Please help. 

Thank you.”

From, Simone

Simone, I hear you loud and clear. What you are experiencing right now is one of the most frightening situations any family can face, and the pressure you are under to agree to end-of-life care in the first week after a brain bleed is, in my professional experience, far too premature and entirely inappropriate. Let me explain exactly what is happening, what should be happening, and what you can do right now.

The first question you need to ask here is: where is the urgency to kill your husband instead of where is the urgency to help your husband get better? Where is the urgency to kill someone? And why is there no urgency to help your husband get better?

What Is a Brain Bleed and What Types Are There?

A brain bleed, medically known as an intracranial hemorrhage, occurs when blood leaks into or around the brain. This can happen as a result of a fall, particularly if the impact causes trauma to the head. There are several types, and the type matters enormously when it comes to prognosis and treatment.

Subdural hematoma — bleeding between the brain and its outer covering, often from a fall, can be slow or rapid in onset. Subarachnoid hemorrhage — bleeding into the space surrounding the brain, often associated with severe headache and sometimes seizures. Intracerebral hemorrhage — bleeding directly into the brain tissue itself. Epidural hematoma — bleeding between the skull and the outer brain covering, often associated with a skull fracture.  Each type carries a different prognosis, different treatment approach, and critically, a different recovery trajectory. If you don’t yet know which type your husband has, that is one of the first things you need to find out. This information will be in his medical records, and obtaining those records is absolutely essential. I will come back to that.

Sedation After a Brain Bleed — Why It Takes Time

One of the most misunderstood aspects of ICU care following a brain bleed is the role of sedation. Your husband was given heavy sedation. This is standard ICU practice. Sedation is used to protect the brain by reducing its oxygen demand, controlling seizure activity and preventing further seizures, reducing intracranial pressure, also known as ICP, keeping the patient still and safe on a ventilator if breathing support is required, and preventing agitation, which can worsen bleeding.

The critical point here — and what I want every family in Simone’s situation to understand — is that heavy sedation masks neurological function. A patient who is heavily sedated will not open their eyes, will not follow commands, and will not move purposefully. This does not mean there is no brain function. It means the brain is being suppressed deliberately by medication.

It is clinically inappropriate to make a definitive prognosis about neurological recovery while a patient is still under heavy sedation. The brain needs time, often several days to weeks, to declare itself once sedation is reduced. This is why Simone’s instinct that her husband needs more time is not only valid — it is clinically very sound.

Less than one week after a brain bleed and a seizure, with heavy sedation on board, is simply too early to make end-of-life decisions in most cases. Sedation could include morphine, midazolam, propofol, fentanyl, and could even include phenobarbitone to suppress any brain activity, which takes a lot longer to wake up from than other sedatives.

Seizures After a Brain Bleed — What You Need to Know.  Simone, you mentioned that your husband had a seizure. Seizures are a known complication of brain bleeds, particularly subarachnoid and intracerebral hemorrhages. They occur because blood in or around the brain tissue is irritating to brain cells and can trigger abnormal electrical activity.

After a seizure, patients often experience what is known as a postictal state — a period of reduced consciousness, confusion, and unresponsiveness that can last from minutes to days. This is a normal, expected neurological response to seizure activity. It does not indicate brain death or permanent damage.  In an ICU setting, a postictal state combined with heavy sedation and opiates can make a patient look far worse neurologically than they actually are. Anti-seizure medications are also heavily sedating. If your husband is on medications such as Keppra, phenytoin, or valproate — and he very likely is — these will further suppress his level of consciousness and make neurological assessment and neurological recovery extremely difficult and delayed.

Signs of Responsiveness — Why Families Often See What the ICU Team Misses.  Simone says she knows her husband is responding, and I believe her. In my 25 years of critical care nursing experience, I have seen this scenario play out many times. Families who are at the bedside continuously — holding hands, talking, watching — often notice subtle signs of responsiveness that are not captured during brief, scheduled neurological assessments by the medical team.

Signs of responsiveness to watch for and document include: eye opening, even briefly or even partially; eye tracking, following your face or movement; squeezing your hand when asked; movement of fingers or toes, especially in response to your voice; changes in facial expression — grimacing, frowning, or relaxing when you speak; changes in heart rate or breathing pattern when you are present; any purposeful movement such as reaching toward a tube or pulling at lines.

Write down every sign of responsiveness you observe. Note the time, what you were doing — talking, touching, calling his name — and exactly what you saw and how your husband responded. This documentation is powerful advocacy evidence when you speak with the medical team. You may also want to take videos or pictures.

Why Are Families Being Pressured Toward Hospice and End-of-Life Too Early?  I want to be very direct with you here, Simone, because you deserve a direct approach. There are systemic pressures within hospital ICUs that can lead families to be presented with premature, unnecessary end-of-life pathways earlier than may be clinically warranted.  These include: ICU bed pressures. Critical care and ICU beds are in extremely high demand, and there is institutional pressure to transition patients who are perceived as having a poor prognosis to end-of-life care.

Prognostic uncertainty is being communicated as certainty. Doctors are human, and uncertainty about outcomes can sometimes be communicated as a more definitive prognosis than the evidence actually supports.

Resource limitations. Ventilator-dependent patients who may require weeks or months of ICU care are extremely resource-intensive.

Communication failures. Families are not always given the full clinical picture, the range of treatment options, or a realistic timeframe for neurological recovery.

None of this means the medical team is acting in bad faith. Most ICU clinicians are dedicated professionals. But it does mean that you, as Simone, have the right to ask hard questions, push back, request specialist opinions, and seek independent advocacy. That is exactly what I am here to help you with at intensivecarehotline.com.

Treatment Options — What Should Be Happening Right Now

Depending on the type and severity of your husband’s brain bleed, the following treatment options should be considered and discussed with you.

Immediate and acute treatment:

Surgical intervention — depending on the type and location of the bleed, surgery may be indicated to evacuate the hematoma and drain the blood. For subdural hematomas in particular, surgical drainage can be lifesaving and lead to remarkable recovery.  Intracranial pressure monitoring — if ICP is elevated, this needs active and immediate management, including positioning, sedation, osmotic therapy such as mannitol or hypertonic saline, and in some cases, surgical decompression.

Seizure management — anti-epileptic medications to prevent further seizures and protect the brain, such as Keppra, phenytoin, or valproate.

Blood pressure management — careful control of blood pressure to prevent rebleeding while maintaining adequate brain perfusion.

Reversal of anticoagulation — if your husband was on blood thinners such as warfarin, aspirin, or newer anticoagulants, these may need to be reversed urgently.

Ongoing rehabilitation-focused care:  Gradual reduction of sedation — a structured, medically supervised sedation wean to allow proper neurological assessment. This is non-negotiable and should be done with the explicit goal of assessing true neurological baselines.

Neurological reassessment — repeat CT (Computed Tomography) or MRI (Magnetic Resonance Imaging) scanning to assess the evolution of the bleed and any associated brain injury. If there is improvement in the imaging, this is critically important prognostic information.

Neurology and neurosurgery specialist review — if this has not happened, it must happen. You have the right to request specialist consultation.

Neuropsychology assessment — once sedation is reduced, formal neuropsychological testing can help establish a cognitive baseline and recovery trajectory.

Physiotherapy, occupational therapy, speech pathology — early rehabilitation input, even while in ICU, is associated with better long-term outcomes.

EEG — electroencephalogram to assess brain electrical activity and rule out ongoing subclinical seizure activity, which can further suppress consciousness.

Important Questions to Ask the ICU Team

What is the exact type and location of my husband’s brain bleed? Has surgical intervention been considered, and why has it been or not been recommended? What is your plan for sedation weaning, and when will you do a full neurological assessment off sedation? Has he been seen by a neurologist or neurosurgeon — if not, why not? Has an EEG been done to assess for ongoing seizure activity? What does the most recent CT or MRI scan show — is the bleed stable, improving, or worsening? On what clinical basis are you recommending transition to hospice care or end-of-life care at this stage, and why? And why is there such an urgency to kill my husband? Why is there no urgency to help my husband?

Your Rights as a Family — How to Push Back and Advocate

You have rights. In almost every jurisdiction and in most Western healthcare systems, the family or next of kin has the right to:

Request formal family meetings with the treating team and have adequate time to ask questions. Request second opinions from another specialist, including from outside the treating hospital. Decline a proposed care pathway, including transition to end-of-life care, palliative care, or hospice care, if you do not believe it is in your loved one’s best interests. Request that active treatment continue while further assessments are being undertaken. Have an independent patient advocate or consultant present in meetings with the medical team — and that could include myself. I have been in many family meetings advocating for our clients very successfully.  You do not have to accept what you are being told at face value. You are not obligated to sign anything you are not comfortable with. You have every right to say: I want more time and more information before any decisions are made.

Why Getting All Medical Records Is Non-Negotiable.  Getting access to all of your husband’s medical records is absolutely non-negotiable, Simone. Without the full picture, you cannot advocate effectively — and neither can I.  The medical records you need include: all CT and MRI scan reports from admission to the most recent; the neurology and neurosurgery consultation notes; the ICU nursing and medical progress notes; the sedation and all medication charts — what he was given, when, and at what doses; EEG results if performed; blood test results — coagulation, electrolytes, organ function; ventilation charts; fluid balance charts — leave no stone unturned; any family meeting minutes or goals of care documentation; the treating team’s formal prognosis documentation.

In all Western healthcare systems, you have the right to request copies of medical records under the Privacy Act and relevant state health legislations. Request them in writing. If the hospital is slow to comply, escalate to the hospital’s patient liaison office or an independent patient rights advocate.

When you have the records, bring them to a consulting call with me and the intensivecarehotline.com team, or you can email them to us and we can start the review, once you have agreed to a consulting plan. We will go through them with a fine-tooth comb, give you everything that we find in detail, identify what questions need to be asked, and help you challenge any clinical decisions that do not appear to be in your husband’s best interest.

How We Help You at intensivecarehotline.com.  Here at intensivecarehotline.com, we specialize in exactly this situation. We are ICU experts who work for families — not for the hospital.  We can: review your husband’s medical records in detail and help you understand what they mean; facilitate a consulting call with me directly and then with the ICU team, with you, on your behalf, asking the right clinical questions that matter and advocating on your behalf; challenge clinical decisions and prognoses that are not supported by evidence in the records; help you understand what treatment options exist and whether they are being offered to you; prepare you for family meetings so you walk in informed and confident; identify whether a second opinion from a neurologist or neurosurgeon is warranted and how to request it; and support you through every step of the process with phone consulting, email consulting, and medical record reviews.

If Your Husband Needs Long-Term Ventilation — Intensive Care at Home.  I want to look ahead with you as well, just in case. If your husband’s recovery leads to a situation where he requires long-term ventilation support — whether invasive ventilation with a tracheostomy, non-invasive ventilation with a tracheostomy, or a tracheostomy without ventilation — that does not automatically mean he has to remain in an ICU indefinitely. There is another way.

With Intensive Care at Home — and you can find us at intensivecareathome.com — we are a third-party accredited specialist home care nursing provider for ventilator-dependent patients with or without tracheostomies, and we are ISO 9001:2015 third-party accredited.  We provide 24/7 specialist home intensive care nursing with critical care registered nurses — not general RNs, not personal care workers, but ICU-trained intensive care nurses. You get specialist care for patients on invasive or non-invasive mechanical ventilation with or without tracheostomy, tracheostomy management at home, and palliative care at home for ventilator-dependent patients who wish to spend their final time in a familiar, loving environment rather than in an ICU.

We are currently working throughout Australia and can also help in the US, Canada, and the UK.  This Australian and German model of home intensive care, which I have direct experience with, demonstrates conclusively that ventilator-dependent patients can live at home safely, with dignity, and with a quality of life that is simply not possible in a hospital ICU. It also puts a different perspective on how you can challenge the ICU team straight away, because you may have another option here instead of end-of-life care.

Your Action Plan, Simone — What to Do Right Now.   If you or anybody watching this is in this situation or a similar situation, here is what I want you to do right now:

Request all medical records in writing immediately — today, not tomorrow. Start documenting every sign of responsiveness you observe — the time, what triggered it, exactly what you saw.  Request a formal family meeting with the full treating team — neurologist, neurosurgeon, and ICU consultant present. Ask all the questions listed above in that meeting.  Do not sign any hospice or goals of care documentation until you have independent expert advice.

Final Words, Simone, your instinct is right, Simone. One week is not long enough to make a definitive decision about your husband’s life when he has had a traumatic brain bleed, heavy sedation, and a seizure. The brain is extraordinarily resilient. I have seen patients who were written off in the first week go on to meaningful recovery. I am not promising that for your husband — I do not have his records, and I have not spoken with his team. But I am telling you that you deserve, and your husband deserves, more time, more assessments, more patience, more courage from the ICU team, and more answers before any irreversible decisions are being made.

Ask: Why is there no urgency to help my husband? Why is there only an urgency to kill my husband? That is going to be one of the most important questions you can ask them. Look them in the eye when you ask that question.

Please reach out, Simone. We are here for you.

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.

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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.