How long can my grandmother stay in the ICU after a stroke and tracheostomy, and the ICU is giving us pressure to consent to a PEG tube?

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.

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So today, I have an email from one of our clients, Mellie, and Mellie writes,

“Hi, Patrik,

My current situation at the moment is that everyone is pressuring us about the PEG (Percutaneous Endoscopic Gastrostomy) tube for my grandmother. The nurses keep telling us that the doctor wants to know if we have changed our minds. As you know, she’s ventilated with a tracheostomy after a stroke. The nurse today told me that if my grandmother doesn’t qualify to stay in the hospital, she needs to be taken to an LTAC (Long Term Acute Care), which stands for long-term acute care hospital, and it’s unique to the United States, so this is a video that’s really important for our viewers in the United States. And that the LTAC won’t accept my grandmother without a PEG tube. I keep telling them we simply aren’t ready to have it done, and we don’t want her in LTAC.

My questions are, how long can a patient stay in the ICU? Grandma has a nasogastric tube for feeding, and why are they pressuring us about the PEG tube?”

From Mellie.

So, Mellie, thank you so much for reaching out and for your question, because this question is so important for a lot of viewers here. And I’m glad to hear that you’re doing well, but I’m also glad to hear that your grandma is still doing well. And I can absolutely hear the stress and pressure you’re under right now with the ICU team pushing for decisions about the PEG tube and threatening transfer to an LTAC. Let me break this down for you because this is such a common situation and scenario that families face in intensive care, and you need to understand what’s really going on here and what your rights are.

So, first of all, how long can a patient stay in the ICU after a stroke and tracheostomy? It’s a great question, and here’s once again what you need to know. There are really no specific time limits for how long a patient can stay in the ICU. The length of stay depends entirely on your grandmother’s medical and nursing needs, her stability, and her progress. If she requires ICU-level care because she’s on a ventilator with a tracheostomy, close monitoring and complex medical management after her stroke, then she has every right to remain in ICU for however long it takes.

Now, but here’s what’s really happening in the ICU and what the ICU is not telling you. Hospitals and ICUs face bed pressures. They face financial pressures, and they face staffing pressures. So therefore, they want to move patients out of the ICU to make room for other critically ill patients, especially when someone has been there for an extended period of time, which is the case in your grandmother’s case. But that doesn’t mean your grandmother doesn’t need ICU care anymore. What they’re telling you is purely based on their needs, not on your grandmother’s needs. Your grandmother’s needs are ICU-level care needs.

So, the ICU team might be suggesting an LTAC because they believe she’s stable enough for a lower level of care, but stability doesn’t always mean she’s ready to leave the ICU, especially if she still requires ventilation, tracheostomy care, and ongoing monitoring.

So why are they pressuring you about the PEG tube? So again, here’s the reality, Mellie. The pressure about the PEG tube is often more about logistics and transfers than what’s actually best for your grandmother right now. So let me explain the nasogastric tube versus the PEG tube situation. Your grandmother currently has a nasogastric tube for feeding through her nose. A nasogastric tube, also known as an NG tube, is considered a short-term feeding solution because it can cause some complications if left in place for too long, things like nasal irritation, sinus infections, and aspiration risk. A PEG tube, also known as a percutaneous endoscopic gastrostomy, is placed directly into the stomach through the abdominal wall and is considered a long-term feeding solution.

The ICU team and the hospital are very likely pushing for the PEG tube because they believe your mother will need long-term feeding support since she has a tracheostomy and is still on the ventilator after her stroke. Now, what would be the much better option here is to work on short-term ventilation, i.e., try to wean your grandmother off the ventilator, and therefore eliminate the need for ventilation, for tracheostomy and eliminate the need for nasogastric tube or PEG tube altogether. But again, that’s not what they’re telling you.

LTAC facilities won’t accept patients without a PEG tube, and this is really the elephant in the room, because they don’t want to deal with a nasogastric tube, which requires more frequent replacement and management, and they simply don’t have the skills or the knowledge to manage that, which should be a big concern for you, right? If your grandma still needs ICU-level care, she won’t be safe in LTAC, and I can guarantee you that with her current condition, she needs ICU-level care.

So, the hospital wants to move your grandmother out of the ICU to free up the bed, and they see an LTAC as the next step. But here’s what’s important, just because they’re pressuring you, doesn’t mean you have to make this decision right now if you’re not ready. I always ask the question to families in intensive care that come to us with similar scenarios where they say, “Oh, the ICU team says we need to make a decision by tomorrow,” and I go, “What if the ICU team asked you to jump off a bridge? Would you jump off a bridge?” Well, the answer is a clear no, so why don’t you respond to perceived pressure? Because that’s all it is, it’s perceived pressure. You don’t need to respond to that; it’s as simple as that.

So, let’s look at solutions. So, here are your rights and what you can do. You and your family, Mellie, have every right to take your time with major decisions like that. Here’s what you need to know.

Number one, you can say no to the PEG tube for now and forever. If you’re not ready to make this decision, you can absolutely say no. The nasogastric tube can continue to be used while you gather more information and make an informed decision about what’s best for your grandmother. I’ve seen patients living with a nasogastric tube for up to 12 months. Nothing wrong with that. It just needs attention and management, but a PEG tube needs attention and management too.

Number two, question the need for LTAC transfer. Why are they saying she needs to go to LTAC? What specifically has changed in her condition that makes ICU-level care no longer necessary? If she still requires mechanical ventilation, tracheostomy care, and close monitoring, she may still need to be in the ICU. As a matter of fact, she still does need to be in the ICU if she’s ventilated with a tracheostomy. But I’ll come to a long-term solution so that she doesn’t have to stay in the ICU in a minute.

You absolutely need to push back, Mellie, and ask specific questions. What ICU-level interventions is she still receiving? What are the specific medical criteria that make her ready for LTAC? What happens if her condition worsens in LTAC? Will she need to come back to the ICU? And I can tell you that over and over again have I seen that when patients go to LTAC, they bounce back into the ICU in no time because LTACs are not equipped to look after ventilated and tracheostomy patients, right?

I’ve made a video a couple of years ago, “10 Reasons Why LTACs in the US Are a Scam,” and I can only encourage you to watch that video, and I stand by every word that I’ve said in this video. And I can tell you when patients go to LTAC, they bounce back into ICU in no time, often within 24, 48, 72 hours, they bounce back into ICU, and then often the discharging ICU no longer has a bed available, and she ends up in a different ICU. It is pure and utter madness to send patients from the ICU to LTAC, then go back to another ICU within 24, 48, or 72 hours. Then your loved one, who’s critically ill, has seen three facilities in no time and is extremely vulnerable. It’s crazy. You don’t do it. Simple.

Next, get access to all medical records. It’s absolutely critical, Mellie, you need to have complete access to your grandmother’s medical records, including all doctors’ notes, nursing notes, progress notes, imaging results, lab results, consultation notes, fluid balance charts, ventilation charts, observations, and the list goes on. Leave no stone unturned. If they’re trying to withhold any information, you need to ask what do they have to hide, what is it that you can’t see?

When you have access to all medical records, you can understand exactly what the doctors are documenting about her condition, see if what they’re telling you verbally matches what they’re writing in the chart, make informed decisions based on complete information, and have leverage when advocating for your grandmother. Without access to the medical records, you’re making decisions in the dark.

So, this is exactly the kind of situation where a consulting call with myself or with one of my team members can make a massive difference for you and your family. Here is what we can do for you. Once you have access to the medical records, we review all the medical records in detail. We’ll go through your grandmother’s entire medical record with a fine-tooth comb so that you understand exactly what’s happening, what treatments she’s receiving, what treatments she’s not receiving, what the prognosis really is, whether the push for PEG and LTAC transfer is medically justified or just about logistics. Are they looking at weaning your grandmother off the ventilator and so forth?

You can also join on a call. We can also join on a call with the ICU team. We participate in family meetings and three-way calls with you, your family, and the ICU team on a consulting call. And during this call, we ask the tough questions you might not know to ask, challenge assumptions, and push back on premature decisions, advocate for your grandmother’s best interest, help clarify the medical situation and what the real options are, and make sure you’re not being pushed into decisions that aren’t right for your family.

Having an expert ICU nurse consultant like me or our team on your side completely changes the dynamics because the ICU team knows they’re dealing with someone who understands intensive care inside out. We’ll help you develop a clear plan for whether to proceed with the PEG tube or not and when, and how to keep your grandmother in ICU if she still needs that level of care, what questions to ask about ventilation, weaning and tracheostomy management, and alternative options to LTAC, which is really a dead end for your grandmother if that’s not what your family wants.

You absolutely do not have to figure this out alone, Mellie.

So, what about if your grandmother needs long-term ventilation and the tracheostomy? So let’s look at the Intensive Care at Home option. Here’s something really important that you need to know about, Mellie. If your grandmother cannot be weaned off the ventilator and the tracheostomy and needs long-term ventilation with a tracheostomy, you have options beyond LTAC. This is where Intensive Care at Home comes in.

What is Intensive Care at Home? Intensive Care at Home is a revolutionary option that allows patients who need long-term ventilation and tracheostomy care to receive that care in the comfort of their own home instead of being stuck in an ICU or going to LTAC facilities. Here’s why these matters for your grandma. Keep her out of institutions. Instead of being in the ICU or in an LTAC long-term, your grandmother can be cared for at home with your family. Professional 24-hour nursing care. Our critical care nurses, ICU-trained nurses who are also trained in ventilator and tracheostomy management, provide 24-hour care in your own home. Your grandma will have a much better quality of life, your family will have a much better quality of life. Being at home with family in familiar surroundings, with personalized care, is infinitely better than being in an institutionalized setting. It’s a predictable and permanent solution if needed. If weaning from the ventilator is unsuccessful, Intensive Care at Home provides a long-term solution that keeps your grandma out of the ICU predictably and permanently.

So when should you consider Intensive Care at Home? If your grandma cannot be weaned from the ventilator, if she continues to need tracheostomy and ventilation long-term. If your family wants to avoid institutional care in ICU or in LTAC, and if you want to provide the best possible quality of life for your grandma while ensuring she gets the medical and nursing care she needs. And also, if your insurance wants to cut the cost of an ICU bed by 50%, that’s 50 percent. So go to intensivecareathome.com to learn more about how this option will work for you and your family.

So, let’s just go back quickly to the about the perspective on the PEG tube decision again, because this is really important. When a PEG tube might make sense, if your grandma’s swallowing function hasn’t recovered after her stroke and she can’t safely eat by mouth, probably for the rest of her life, that’s when a PEG tube might make sense. If she’s going to need long-term nutrition support, weeks to months, if the nasogastric tube is causing complications or discomfort. If she’s going to be on long-term ventilation and or a tracheostomy and needs reliable nutrition, that’s when a PEG tube might make sense, but for now, I think your focus should be on trying to get your grandma off the ventilator and the tracheostomy, and if that can’t be achieved, then there’s plenty of time to talk about a PEG tube.

So, why you might want to wait on the PEG, if there’s still a chance her swallowing function will improve with therapy, if you’re not sure yet about long-term plans and prognosis, if you want to see if she can be weaned off the ventilator first, if your family isn’t ready to make that decision and simply needs more information. The bottom line is, Mellie, this is your and your family’s decision to make, not the hospital’s decision, and you can take any time you want, and you need to make this decision.

Once again, request access to all medical records, get on a call with myself, ask for a family meeting with the ICU team. Don’t be pressured into quick decisions, have a look at intensivecareathome.com. And your family will need expert support in these situations, and that’s exactly what we do with intensivecarehotline.com and with intensivecareathome.com.

Families get pressured by ICU teams all the time to make major decisions quickly. Decisions about feeding tubes, tracheostomy, withdrawing life support, moving to different places. They’re often making these decisions without complete information and without understanding all their options. Don’t do that, and that’s exactly once again where we come in at intensivecarehotline.com.

You get expert ICU nurse consultant and advocacy in your corner. You get access to someone who speaks the medical language and understands ICU culture. You get advocacy and support to push back on inappropriate pressure. Help making informed decisions so that you have peace of mind, control, power and influence, making sure your loved one always gets the best care and treatment based on complete medical records and accurate information. Don’t try to navigate this alone.

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. 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.

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Thank you so much for watching.

This is Patrick Hutzel from intensivecarehotline.com, and I will talk to you in a few days.

Take care for now.