My name is Patrik Hutzel from intensivecarehotline.com, and this is another quick tip for families in intensive care. At intensivecarehotline.com, we improve the lives for families of critically ill patients in intensive care instantly so that you can make informed decisions, have peace of mind, control, power and influence, making sure your loved one always gets best care and treatment, even if you’re not a doctor or a nurse in intensive care.
| Marissa’s Question:
“My father was put in ICU a week ago after he spiked a fever following a cancer treatment. He was intubated after becoming confused and combative with shallow breathing. The team treats drug reactions, sepsis, meningitis, and other infections — but cultures are not pointing to infection. He’s been on paralytics, recently woke up during a dangle session with PT, but is now awake, agitated, overstimulated, and not following commands. He’s on Precedex and Propofol. We’re eager to get him off the vent. What should we be pushing for?” |
First Things First: You Need All the Medical Records
Before anything else, Marissa — and every family in a similar situation — you need to be asking for ALL your father’s medical records right now. That means:
- ICU nursing notes (every shift)
- Physician progress notes
- All lab results, cultures, and microbiology reports
- CT scan and MRI radiology reports
- Ventilator settings and respiratory therapy documentation
- Medication administration records (MAR)
- Physical therapy notes including the dangle session documentation
You have a right to these records. Don’t wait until your father is discharged. Get them now, while things are unfolding, so you can understand what is happening in real time and ask the right questions.
| TIP: Request records in writing every few days. Having records in hand means you can have an independent clinical expert review them and give you a second opinion — something that could change everything. |
What Is Actually Happening to Marissa’s Father?
Let’s break this down clinically so you understand exactly what you’re dealing with.
1. He Was Intubated Due to Acute Encephalopathy After Cancer Treatment
Your father became confused, combative, and developed shallow breathing after cancer treatment. This is a classic presentation of acute encephalopathy — a sudden deterioration in brain function — which has many possible causes in a cancer patient:
- Reaction to chemotherapy or immunotherapy (e.g., CAR-T cell therapy, immune checkpoint inhibitors, intrathecal chemo)
- Paraneoplastic encephalopathy (the cancer itself triggering an immune response against the brain)
- Septic encephalopathy (even without confirmed infection, the body’s inflammatory response can affect the brain)
- Metabolic encephalopathy (electrolyte imbalances, liver or kidney impairment, medication toxicity)
- Viral or bacterial meningitis/encephalitis (even if cultures are negative so far)
- Posterior Reversible Encephalopathy Syndrome (PRES) — associated with some cancer medications and hypertension
2. He Was Paralyzed for 2 Days — That Has Real Consequences
Neuromuscular blocking agents (paralytics) like cisatracurium or vecuronium are sometimes necessary in the ICU to synchronize a patient with the ventilator. But even 48 hours of paralysis can cause:
- ICU-acquired weakness — muscle wasting and weakness that affects the ability to breathe independently and follow commands
- Prolonged sedation effects — when you stop paralytics, sedatives may still be on board and can take time to clear
- Post-paralytic cognitive haze — patients can be awake but not cognitively functional for days after
3. He Is Awake but Not Following Commands — This Is a Red Flag the Team Should Be Investigating
The fact that your father can open his eyes during a dangle but cannot follow simple commands like ‘squeeze my hand’ tells us his brain is working at a very basic level but not at a higher cortical level. This gap between wakefulness and responsiveness — sometimes called a disorder of consciousness — needs urgent neurological evaluation.
| IMPORTANT: The fact that 2 CTs and an MRI have shown no structural abnormality is actually good news in one sense — it means no stroke, no bleed, no obvious tumor involvement in the brain. But it does NOT rule out functional brain disorders like encephalopathy, seizures, or autoimmune encephalitis. |
What Should Marissa Be Pushing for Right Now?
- Urgent Neurology Consultation
You mentioned the hospital has no on-staff neurologist. This is a problem. Your father needs an urgent neurology review — either via:
- Transfer to a facility with neurology on-site (a major tertiary hospital or academic medical center)
- Teleneurology — many hospital systems now offer remote neurologist consultation via video
- Formal referral to a neurologist at a larger hospital
Push for this today. The longer encephalopathy goes undiagnosed, the greater the risk of permanent cognitive impairment.
- EEG — Non-Convulsive Status Epilepticus Must Be Ruled Out
You mentioned the team is planning an Electroencephalograph (EEG). This is critical. Non-convulsive status epilepticus (NCSE) is a condition where a patient is having continuous seizure activity in the brain without visible convulsions. It can look exactly like what your father is experiencing — awake, agitated, not following commands, BP and HR fluctuating. NCSE is treatable, but only if diagnosed. Push for the EEG to happen today, not tomorrow.
| KEY QUESTION FOR THE TEAM: “Has non-convulsive status epilepticus been formally ruled out? When is the EEG happening and who is interpreting it?” |
- Comprehensive Metabolic and Toxicology Workup
Push the team to review:
- Ammonia levels (elevated ammonia causes severe encephalopathy)
- Thiamine (B1) levels — deficiency causes Wernicke’s encephalopathy
- Sodium, glucose, calcium, magnesium, phosphate — all can cause altered consciousness
- Liver function tests and kidney function
- Thyroid function (myxedema coma can mimic this)
- Drug levels — what specific cancer drug was he on? Some chemotherapy agents are directly neurotoxic
- Autoimmune encephalitis panel — anti-NMDA receptor, LGI1, CASPR2 antibodies (this can be missed but is treatable)
- Lumbar Puncture (Spinal Tap) — Has It Been Done?
If your father has not had a lumbar puncture yet, ask why. A CSF (cerebrospinal fluid) analysis can detect:
- Meningitis and encephalitis (viral, bacterial, fungal, tuberculous)
- Leptomeningeal carcinomatosis (cancer spreading to the membranes around the brain — can cause profound encephalopathy)
- Paraneoplastic and autoimmune encephalitis markers
A normal MRI does NOT mean a lumbar puncture is unnecessary.
- Sedation Strategy — Less Is More
Your father is on Precedex (dexmedetomidine) and Propofol, both short-acting sedatives. This is appropriate — but ask the team:
- Are they doing daily sedation holds (also called spontaneous awakening trials)?
- Is there a clear sedation target being documented (e.g., RASS score of -1 to 0)?
- Is he getting adequate pain management? Agitation and overstimulation can be driven by pain.
- Is there a delirium protocol in place (orientation, lighting, sleep-wake cycle, family involvement)?
| TIP: Agitation driving up BP and HR is often a sign of pain, disorientation, or delirium — not just “being awake.” Ask the team to distinguish between these and treat accordingly. |
- Spontaneous Breathing Trials (SBT) — How Are They Assessing Readiness?
Getting off the ventilator requires two things working in parallel: the lungs being ready AND the brain being ready. Right now, your father’s barrier to extubation is cognitive — he cannot follow commands. However, that doesn’t mean the lungs should be neglected. Ask the team:
- Is he passing daily spontaneous breathing trials (being placed on minimal ventilator support for 30–120 minutes)?
- What are his respiratory mechanics — tidal volumes, respiratory rate, negative inspiratory force?
- Is the weaning plan documented and is there a target date?
- Consider Transfer to a Major Tertiary Hospital
I want to be direct with you, Marissa. A small community hospital without on-staff neurology is not the right place
for your father right now. He needs:
- 24/7 neurology coverage
- Neurointensive care capability
- Access to autoimmune encephalitis workup
- Continuous EEG monitoring (not just a one-off EEG)
You can request a transfer. You can advocate for it. And if the team is resistant, that is exactly the kind of situation where an independent clinical advocate can make a real difference.
How Can a Consulting Call with Intensive Care Hotline Help?
I know how overwhelming this is. You’re watching your father fight for his life, and you don’t know what questions to ask, who to push, or whether the team is doing everything possible.
This is exactly what I do. When you book a consulting call with me and my team at Intensive Care Hotline, we work with you to understand exactly what is happening and what needs to change.
| CONSULTING OPTIONS: call me on one of the numbers on the website or book a consulting call with me here or email [email protected] |
On a consulting call, we can:
- Review your father’s medical records with you
- Help you formulate specific questions to put to the ICU team
- Advocate directly with the ICU team on your behalf
- Give you an independent clinical opinion on his treatment plan
- Help you navigate a potential transfer to a tertiary hospital
What Happens If He Can’t Be Weaned Off the Ventilator?
I want to raise this now — not to alarm you, but because it is a question families need to think about before it becomes urgent.
If your father’s encephalopathy is prolonged, if weaning proves difficult, or if he develops chronic respiratory failure, he may need a tracheostomy and long-term ventilator support. This does NOT have to mean permanent ICU admission.
| Intensive Care at Home is Australia’s only third-party accredited intensive care at home nursing service. We provide specialist Critical Care Registered Nurse-led home nursing for patients who are ventilator-dependent — whether on invasive ventilation via tracheostomy or non-invasive ventilation (NIV/CPAP/BiPAP).
We have helped families just like yours transition their loved ones out of ICU and into a high-quality home care environment — predictably and permanently. We operate all across Australia in all states and territories, in all metropolitan areas as well as all regional and remote areas. For patients who need palliative care at home with ventilator support, we provide that too — with the same clinical excellence and compassion. If you are in the USA, Canada, UK, India or anywhere else in the world, please reach out to us as well, we can help you! |
Summary: What to Do Right Now
- Request ALL medical records — every shift, every note, every resul
- Push for urgent neurology consultation — transfer if necessary
- Demand the EEG happens today, not tomorrow
- Ask about non-convulsive status epilepticus
- Request a full metabolic and toxicology panel including ammonia, thiamine, autoimmune encephalitis antibodies
- Ask whether a lumbar puncture has been done or is planned
- Review sedation strategy with the team — ensure daily sedation holds are happening
- Ask about spontaneous breathing trial results
- Book a consulting call with Intensive Care Hotline for independent expert advocacy
| www.intensivecarehotline.com | www.intensivecareathome.com |
Marissa, I hope this gives you a clear roadmap. Your father is lucky to have someone fighting for him. Keep pushing. Keep asking questions. And don’t hesitate to reach out.
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.
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ICU_FAQ_Father_on_Ventilator_After_Cancer_Treatment |
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.