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

Before I get started, I want to quickly mention that if you’re new here and you’re dealing with a critically ill loved one in intensive care, make sure you hit that subscribe button, click the notification bell, click the like button and share this video with anyone who has a loved one critically ill in intensive care because I’m making those videos for families like you to help you make informed decisions, have peace of mind, control, power and influence, making sure your loved one always gets best care and treatment during this absolute nightmare that you’re going through now in intensive care.

So, today I have a question from Jennifer who’s asking:

“My dad is a 69-year-old, chronic alcoholic and smoker of 52 years. Besides that, he is otherwise healthy. He was admitted to the ER four months ago due to not being able to breathe. To make a long story short, he has been in the ICU on a ventilator for 4 weeks now, intubated, has pneumonia now, an infection, seizures, and now he’s not producing enough urine. They keep him sedated. He called me 2 weeks ago from ICU and he was alert. I think they’re trying to just let him die because they don’t know what’s wrong with him. What should I do when I feel like the medical team has given up on my father.”

– Jennifer

Oh, Jennifer, here’s my answer. I am very sorry you’re going through this, this is an absolute nightmare, and I can completely understand why you feel the way you do right now. The fact that your dad was alert and called you two weeks ago and now he’s heavily sedated with multiple complications, is incredibly confusing and frustrating.

Let me address this head on.

What should you do when you feel like the medical team has given up on your loved one?

Well, number 1, and I can’t stress that enough for anyone watching this who’s in a similar situation – get access to all medical records immediately. Jennifer, you need to get access to all of your dad’s medical records immediately. This is absolutely critical.

You need to know exactly what’s going on, what treatment he’s receiving, what the diagnoses are, what the test results show, what the ICU team’s plan actually is. Without access to the complete medical records, you’re flying blind, you can’t advocate effectively, you can’t ask the right questions, and you can’t challenge the ICU team’s decisions that might not be in your dad’s best interest, because letting him die is not in your dad’s best interest.

The medical records will show you lab results like pathology results including kidney function, infection markers, liver function, red blood cells, white cells, etc., imaging reports, chest x-rays, CT scans, ventilator settings and weaning attempts, list of medications, sedation levels, antibiotics, seizure medications, progress notes from doctors and nurses, physiotherapists, occupational therapists, and the list goes on, consultation notes from specialists. This documentation is your roadmap to understanding what’s really happening.

Number 2 – book a consulting call with myself or with someone from my intensivecarehotline.com team. Once you have the medical records, the next step is to book a consulting call with me  or one of my team members at intensivecarehotline.com, and here is why this is so important.

During a consulting call, we will review all of your dad’s medical records in detail, help you understand what’s actually going on medically, prepare you with the right questions to ask the ICU team, help you facilitate a meeting or conference call with the ICU team where we can be on the call with you, question the ICU team’s decisions and treatment plan, advocate for your dad and make sure all options are being explored and considered.

Challenge any defeatist attitudes or premature end of life decisions. The reality is, Jennifer, families often feel like the medical team has given up because there’s a communication breakdown. Sometimes the ICU team hasn’t given up, but they’re not explaining things clearly. Other times, unfortunately, they genuinely have lost hope or they’re uncomfortable with complex cases.

Having someone like me or my team with 20 plus years’ ICU experience reviews the case and actually get on the phone with the ICU team alongside you is a game changer. It levels the playing field, it ensures your dad gets advocacy or gets the advocacy he deserves. Also, understand what’s happening with your dad right now.

Let me break down what might be going on with your dad based on what you’ve told me: 4 months in hospital, 4 weeks on a ventilator. This is concerning because it suggests that he has difficulties weaning from the ventilator, there are ongoing complications, possible ventilator associated pneumonia, also known as VAP, which you’ve mentioned he has, multi-organ issues developing. Hospital acquired pneumonia, especially ventilator associated pneumonia, also known as VAP, is common but serious. The key question is what organism is causing it, is he on the right antibiotics, are they treating it aggressively enough?

Next, seizures, this is a red flag that needs investigation.

Seizures in ICU can be caused by medication withdrawal, especially alcohol withdrawal given his history, electrolyte imbalances such as potassium, magnesium, calcium, phosphate, etc., infection spreading to the brain, sedation, medication, sunken lower seizure threshold, hypoxic brain injury, lack of oxygen to the brain. Has he had a CT or an MRI scan of his brain, an EEG (Electroencephalograph) to monitor seizure activity? What anti-seizure medications is he on?

Next, not producing enough urine, that you mentioned he might have an acute kidney injury, which is serious and suggests his kidneys are struggling. This could be due to sepsis, which is a severe infection, dehydration, medications that are toxic to kidneys, low blood pressure, multi-organ failure developing. Are they considering dialysis or continuous renal replacement therapy, also known as CRRT or hemofiltration?

Next, he’s on heavy sedation. The fact that he was alert two weeks ago but is now heavily sedated raises questions. Why? Is it because the seizures need to be controlled? Is he fighting the ventilator?  They’re trying to reduce his oxygen demand. They’ve given up and are just keeping him comfortable. You need answers to these questions, Jennifer.

Next, the alcoholism and smoking history. Important context: your dad’s 52-year history of smoking and chronic alcoholism is medically significant, but it doesn’t mean he’s unsalvageable. Yes, it puts him at a higher risk for chronic lung disease such as COPD (Chronic Obstructive Pulmonary Disease), asthma, emphysema, liver disease, difficult ventilation weaning, alcohol withdrawal complications, but here’s the thing, none of this automatically means he can’t recover.

I’ve seen patients over and over again with similar or worse histories recover and get off the ventilator. The key is aggressive, appropriate treatment and not giving up prematurely and staying positive.

Next, challenge the ICU team because they actually work for you. Jennifer, you have every right to question the ICU team and demand answers. You are your dad’s advocate. Don’t let anyone intimidate you or brush you off.

Here are questions you must ask at the next family meeting.

1. What is the current working diagnosis?
2. What exactly is wrong with my dad?
3. What infections does he have and what antibiotics is he on? Are the antibiotics working?
4. What are the culture results?
5. Why is he having seizures?
6. What work up has been done?
7. What medications is he on for this?
8. Why are his kidneys failing? What’s being done about it?
9. Is dialysis being considered?
10. What’s the plan to wean him off the ventilator? Has this been attempted? Why doesn’t it work?
11. Why hasn’t he got a tracheostomy?
12. Why is he so heavily sedated now when he was alert two weeks ago? What changed? Once again, he shouldn’t be on the ventilator for 4 weeks without having got a tracheostomy.
13. What’s his overall prognosis and what are you basing that on?
14. Are they giving up on him?
15. What other specialists are involved? Pulmonologist, respiratory physician, nephrologist, neurologist, infectious disease?
16. What are all his treatment options available, including tracheostomy, you know, transfer to another hospital, and intensive care at home? And I’ll come to that.

If the ICU team can’t give you clear, satisfactory answers, or if they’re pushing for palliative care, or premature withdrawal of treatment without a clear irreversible diagnosis, you need to push back hard and consider getting a second opinion.

This is where I or one of my team members at intensivecarehotline.com, on a call with the ICU doctors becomes invaluable. We can ask hard questions, we can challenge them, we can advocate. Because by now if he can’t be weaned off the ventilator, he should have a tracheostomy.

Now Jennifer, I also want to make you aware of something important. If your dad needs long-term ventilation, and with everything that you’ve shared, I do believe he needs for now, whether it’s with invasive ventilation, i.e. he needs a tracheostomy, or with non-invasive ventilation such as BiPAP or CPAP, and if he can’t be weaned off the ventilator in the traditional ICU timeline and setting, there is another option which is intensive care at home, and you can get more information at intensivecareathome.com. Because it’s a long-term option that will keep your dad out of ICU predictably and permanently if he requires ongoing ventilation plus minus tracheostomy support.

Intensivecareathome.com provides 24-hour intensive care level care at home with critical care trained nurses, 24 hours a day, ventilation management, tracheostomy care, all medical equipment and skilled nursing needed, a dignified, comfortable environment for long-term recovery or treatment, an alternative to a long-term stay in ICU or if you’re in the US to an LTAC or a nursing home even.

This is also an option for palliative care if that becomes necessary, but let me be clear, we’re not at that point yet based on what you’ve told me. The point is, even if your dad needs prolonged ventilation support or can’t be weaned in the typical time frame, it doesn’t mean he’s dying. It means he needs a different care pathway and intensivecareathome.com can provide that.

The brutal truth, Jennifer, is that sometimes ICU teams do give up way too early, because they’re uncomfortable with uncertainty, they have bed and financial pressures to free up ICU beds, they’ve made unfounded assumptions based on age, medical history, or perceived quality of life judgements. They’re not being creative or aggressive enough with treatment options, they lack experience with complex prolonged ICU cases. Your gut feeling that they’re trying to just let him die because they don’t know what’s wrong with him is probably accurate, and that is completely unacceptable. If they don’t know what’s wrong, the answer is more investigation, more specialists, more aggressive workup, and not giving up.

Like I said, what you need to do right now is request access to all medical records immediately. You have a legal right to these. Go to intensivecarehotline.com and book a consulting call with me or call me on one of the numbers on the top of our website.

Get access to all medical records. We’ll prepare you or participate in a family meeting with the intensive care team with you and you will see the dynamics change very quickly. Don’t accept vague answers or defeatist attitudes.

If long-term ventilation becomes necessary, look at intensivecareathome.com as a viable alternative to keep your dad out of ICU and institutionalized care because he probably does need a tracheostomy at this particular point in time.

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.

If you like my videos, subscribe to my 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.

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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.