My name is Patrik Hutzel from intensivecarehotline.com, where we instantly improve the lives of 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.
Today I have an email from Rachel who asks the following question:
“Hi Patrik,
I spoke to the doctors in the ICU yesterday, saying that my mother is going to be passing away soon due to not being able to get her oxygen levels stable. She has inflammation, also pleural effusion, pleural edema, and infection due to a lack of response time and not listening to family when it was brought to their attention months ago. Also, with her cancer of the liver, the family requested a certain kind of MRI (Magnetic Resonance Imaging) and CT (Computed Tomography) of her liver to see and monitor if the cancer hasn’t come back. We even had her personal GI (Gastrointestinal) doctor contact the hospital because of the lack of response on the hospital side, and they even told him there was no growth that they already checked, which was a lie.
Four months later, they finally did the check we asked, and they found the cancer came back. But yet they halt her lactulose medication and her water pills. She was very swollen yesterday. They put her on sedation now, so she’s not responding. I had them do a thoracentesis which took out 1.5 liters, which improved her oxygenation almost immediately, but they do need to give her some medication to help with the inflammation, also treat her infection. The doctor said they need more time, but I believe administration is wanting to kill my mom and how long they should be treating her because they would be only torturing her, so they say. But yesterday after the procedure, they dropped her FIO2 (Fraction of Inspired Oxygen) from 100% to 60%. Peep (Positive End Expiratory Pressure) is down to 12, and she was reading at 97% on the ventilator with a breathing tube. However, I told them if they keep holding her water pill and lactulose that she has to take to maintain her life due to her health conditions, we are going to keep going in circles because the fluids will just fill up again and not giving her the lactulose when needed is causing a lot of problems for her as well. I’m still fighting for her life, but would like to talk to you, Patrik, to see what you think should be done next.”
Rachel, thank you for writing in and where do I even start with this? Your mother’s situation is incredibly complex and what you’re describing is unfortunately all too common in intensive care units across the world. Your mom’s got liver cancer that’s come back, pleural effusion requiring thoracentesis, inflammation, infection, and hospitalists are talking about her passing away soon because they can’t stabilize her oxygen levels. But here’s what’s really concerning: you’re describing a pattern of delayed responses, not listening to family concerns, withholding essential medications like lactulose and diuretics, which you are referring to as water pills, which are medications such as furosemide, Lasix, spironolactone, and now suddenly they’re rushing to talk about end of life when actually the thoracentesis improved her oxygen levels immediately.
Let me break this down for you.
The Medical Picture
Your mother has multiple things going on. Number one, liver cancer recurrence, which the hospital delayed investigating for four months despite the family and her GI doctor requesting it. Next, pleural effusion, fluids around the lungs that needed thoracentesis, 1.5 liters removed, which also means with the liver cancer recurrence and the pleural effusions, her albumin would probably be low, and she probably needs albumin supplement. Next, inflammation and infection are both treatable conditions. Fluid overload because they’re holding her diuretics, and probably also because she’s got a low albumin, which retains fluids as well. Next, hepatic and liver issues are worsening because they’re withholding lactulose.
Here is what’s absolutely critical, Rachel. After the thoracentesis, her FIO2 dropped to 60%, PEEP to 12%, and she’s saturating at 97%. That’s actually a significant improvement, Rachel.
Why Does This All Matter?
The ICU is saying she’s dying and can’t be stabilized, but you just described stabilization happening right in front of your very eyes after appropriate treatment. This is where you need to push back hard. The thoracentesis worked. The question isn’t, is she dying? The question is, are they treating everything that’s treatable?
What Should Happen Next?
Treat the infection aggressively with appropriate antibiotics based on cultures. Address the inflammation, whether steroids or other anti-inflammatory treatment. Resume essential medications. The lactulose for hepatic encephalopathy and diuretics for fluid management are non-negotiable for someone with liver disease. Manage the pleural effusion. If it keeps coming back, they need to investigate why and potentially place a pleural drain or a chest drain catheter for ongoing drainage. Next, nutrition and metabolic support. With liver cancer and infection, her nutritional needs are critical and I can almost put money on that her albumin levels are low and that her coagulation markers could be out of whack as well, such as APTT (Activated Partial Thromboplastin Time), INR (International Normalised Ratio), and she might be at risk of bleeding. Her platelets might be low. Again, she might be at risk of bleeding.
The Administration Pressure Problem
You mentioned hospital administration is intervening on how long they should be treating her. This is massive red flag territory, Rachel. Hospitals should not be making treatment decisions based on length of stay or resource utilization. Medical decisions must be based on medical appropriateness and what patients and families want. When you hear “we need more time” from doctors, but the administration is pushing back, that tells me the medical team knows she’s treatable, but they’re getting pressure from above.
Why You Need Access to All Medical Records Right Now
Rachel, this is absolutely critical. You need to request access to all medical records immediately. Every doctor’s note, every nursing note, all pathology results, imaging reports, everything, the whole works. Leave no stone unturned. Why? Because you’re describing four months of delayed cancer surveillance despite family and physician requests, withholding essential medications, claims they already checked for cancer when they hadn’t, now suddenly talking about comfort care when treatment is showing improvement. You’ll need documentation of everything that’s happened because this sounds like it could be heading towards a quality of care issue or even potential negligence. The medical records will show the timeline of when you requested things, when they were done or not done, and what the results were. This is your ammunition for advocacy and potentially for accountability.
What a Consulting Call Will Do for Your Mother
Here’s where working with myself and my team at intensivecarehotline.com will be an absolute game-changer for your mother. We arrange a consulting call with you and the ICU team, and this changes everything because we speak the ICU language. Doctors respond differently when another medical professional is asking all the right questions and is asking all the questions that you haven’t even considered asking but must be asked.
We challenge their assumptions. We will clarify the actual plan, not the vague “she’s not stable” talk but specifics about treatment goals, timelines and expected outcomes. We will challenge the prognosis. If they’re saying she’s dying but treatment is working, we need to actually understand what the actual basis is for that prognosis. We question and advocate from a clinical perspective, asking about things like: Why are you withholding diuretics when she’s fluid overloaded? Why are you withholding lactulose and not avoiding encephalopathy? What’s the treatment plan for the infection? What cultures have been sent? What inflammatory markers are you following? Why aren’t you treating the inflammation aggressively?
We will identify what’s being missed. In complex cases like your mother’s case, there’s often something that’s not being addressed that could make all the difference. ICU teams are not even telling you half of what’s going on because they assume you don’t understand, and we will bring light into the darkness, and we will turn it all upside down for you and make sure your mom gets the best care and treatment.
The reality is that when hospitals know a family has professional medical advocates involved, the quality of communication and the quality of care usually immediately improves dramatically because they know they’re being held accountable.
The Ventilator and the Potential for a Tracheostomy Question
Here’s something else, Rachel, you need to think about. If your mother continues to need the ventilator and they start talking about a tracheostomy, that’s actually not a death sentence. It can be a bridge to recovery or a long-term management strategy. But here’s what most families don’t know: you don’t have to keep your mother in ICU forever if she needs long-term ventilation and tracheostomy support.
This is where intensivecareathome.com becomes incredibly relevant. If your mom ends up needing a tracheostomy and long-term ventilation support, we can help you get her out of ICU predictably and permanently with Intensive Care at Home. That means professional ICU level care in a home environment, better quality of life or a better quality of end of life for your mother, better quality of life for you and your family. You don’t have to spend day and night in ICU. You can actually be in your mother’s home or in your home with your mother. No more hospital infections. Family can be involved in care. Often better outcomes because of reduced stress and better sleep. Cost effective compared to long-term ICU stays. We cut the cost of an ICU bed by around 50%.
Many patients whose families are told need ICU forever actually do incredibly well at home with proper support. And with liver cancer, if she can be managed outside the acute hospital setting, she could potentially be well enough for cancer treatments or clinical trials that aren’t options while she’s in the ICU.
What You Need to Do Right Now
Stop accepting vague answers. “She’s unstable, she’s dying” is simply not good enough. Every day your mother is living, you must question their clinical judgment, because if your mom is surviving, their clinical judgment is wrong. You need specifics. What exactly is unstable? What exactly means my mom is dying? What are you doing about it? What’s the timeline?
Demand they restart essential medications. Lactulose and diuretics are not optional for someone with liver disease and fluid overload. Push for aggressive infection treatment. What cultures were sent? What antibiotics? What’s the plan if current antibiotics aren’t working? Question the inflammation management. What are they doing about it? Are they using steroids? Why or why not?
Request a family meeting with all specialists: GI, pulmonology, critical care, and oncology. Get access to all medical records. Request them today. Consider getting us involved at intensivecarehotline.com. A consulting call with myself and the ICU team will change everything for you and will clarify everything and change your mom’s trajectory.
The Bottom Line
Rachel, your instincts are right. Something’s very wrong with how your mother’s care is being managed in ICU. The delays, the withholding of medications, the sudden dire prognosis when treatment actually shows improvement, none of this adds up. You did the right thing, pushing for the thoracentesis. You’re doing the right thing, fighting for her medications. You need to keep fighting because it sounds like your mother still has fight left in her, but you shouldn’t have to fight alone, and you shouldn’t have to fight without the medical expertise to back up your advocacy. And this is exactly what we do at intensivecarehotline.com.
We help families like yours to question, challenge, advocate, and make sure your mom gets best care and treatment always. When things don’t make sense in ICU, do not let the ICU team rush you into comfort care when treatment is working. Don’t let hospital administration pressure override medical appropriateness, and don’t let them tell you there’s nothing more to be done when medications are being withheld and treatable conditions are being treated. Your mom deserves aggressive, appropriate treatment as long as there’s a reasonable chance of improvement and as long as there’s hope, and from what you’re describing, she’s showing she can improve when treated properly.
Get those medical records now, get us involved, and let’s fight for your mother together and turn this situation around.
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.
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. 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.
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 if 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.