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 a question from one of our clients, Mellie, who says:

“Hi Patrik, 

I have a question.  My grandma’s been in the ICU for 3 weeks now. She suffered a stroke when we found her on the ground 2 weeks ago. She was intubated for 2 weeks and currently has a tracheostomy. They’ve just done it yesterday. She’s on 6 liters of oxygen and has been tolerating it pretty well. We’re trying to buy more time, trying to keep her in the ICU. She is now in a step-down ICU. We have not agreed to a PEG tube, but the doctors and nurses are pushing it. We keep saying no. Social workers started calling me, asking what we wanted to do. Obviously, my goal is to keep my grandma in the ICU for now because I don’t want her to be sent out elsewhere. They just called me today again, saying that the social worker, case manager, their boss, and the doctors want to have a meeting with me and my parents. Do we have to attend the meeting? Or are we allowed to kindly decline? I know what they will tell us because they’ve been telling us that we have to send my grandma out to another facility. But if we’re not ready to have a meeting, can they force it upon us? 

We are grateful for your help.” 

From Mellie.

Mellie, thank you again for reaching out, for being a member, and for sending such a great question.

Let me start with another question, Mellie: if the hospital asked you to jump off a bridge, would you jump off a bridge? I think we all know the answer to that. So that leads me back to understanding your rights and the hospital’s pressure. You’re asking if you can decline a family meeting where the hospital is pushing for discharge, and the short answer is no, they cannot force you to attend a meeting. Who are they to force you to attend a meeting? But strategically, you may want to attend, only with proper preparation and support.

Let me repeat that: they can’t force you to attend a meeting, but you may want to consider attending with proper preparation and support. That means don’t go into a meeting with their narrative — go into the meeting with your narrative, with your agenda.

Mellie, here’s what’s really happening: the hospital’s case management team, social workers, and doctors are organizing this meeting because they want to push your grandmother out of the step-down ICU into a long-term acute care facility or a skilled nursing facility, which won’t work anyway. They will likely frame it as “what’s best for your grandma,” or “she no longer meets ICU criteria,” which is nonsense, and I’ll come to that. But what they’re really saying is they want to free up the ICU bed, reduce costs, and get your grandma out because it’s out of sight, out of mind. It’s a one-size-fits-all approach, and you don’t want your grandma to be the one-size-fits-all approach. Your grandma is an individual with her own unique needs.

So, you might want to consider attending with an advocate on the call or in the meeting, like myself. While you can decline the meeting, here’s how you might want to attend with an advocate on your side — but only with preparation:

1. Ask for a written agenda of the meeting. Think about it — any meeting that’s worth its salt in business or in life has an agenda, and usually a written one. This is a meeting about potentially life or death, and there’s no agenda in writing? I question that. So, number one: get a written agenda.

2. Once you’ve seen the written agenda, decide whether you want to go and put your own items on the agenda. You need to understand their exact clinical reasoning for discharge. You need documentation of what’s being said and proposed. You can advocate and question their decision in real time. You can demand more time if her condition isn’t stable.

But here’s the critical part: don’t go into this meeting alone or unprepared. This is exactly where a consulting call with myself or one of my team members becomes absolutely critical. We can prepare you with the right questions to ask the ICU team. I can ask the right questions myself and counter-question depending on what they say, because you need someone to advocate, question their discharge plan, and challenge their clinical reasoning — because your grandma is not medically stable as long as she’s ventilated with a tracheostomy. You can buy more time by pointing out legitimate medical concerns.

So, before any meeting and before making any decisions, you must also have access to all of your grandma’s medical records. This includes, but is not limited to daily progress notes from doctors and nurses, ventilation settings, weaning parameters, lab results, pathology results, arterial blood gases, imaging reports, fluid balance charts, and vital signs — and the list goes on.

We know whether medical records are complete or not. We look at them because we’re experts; we know straight away if they’re complete or not. Without these records, you’re flying blind, and the ICU team can tell you anything they want. With the records, we can analyze whether she’s truly ready for discharge or whether the hospital is pushing her out prematurely for financial reasons, or because they don’t have staff. We review these records together and determine if she’s medically stable enough for transfer. What are the actual weaning parameters showing? Is there even a weaning plan? Is she improving or declining? Are they doing all the right things? What are the realistic options?

The hospital is pushing the PEG (Percutaneous Endoscopic Gastrostomy) tube because it makes her easier to transfer to a long-term care facility. It removes the feeding issue as a reason to keep her in the ICU. Many facilities require it for admission, and that should tell you everything you need to know about these facilities. If they can’t look after a nasogastric tube, it should concern you greatly. You have every right to refuse the PEG tube if you’re not ready or if you’re concerned about the implications. Do not let them bully you into it. However, you need to understand the clinical reasoning: Can she swallow safely? Is she aspirating? What does the swallow study show? These are questions we can help you ask.

Let’s break down where your grandma is right now: 3 weeks in ICU, now step-down ICU, stroke, intubation for 2 weeks, now a tracheostomy, on 6 L of oxygen and tolerating it well. The hospital is pushing discharge to an LTAC (Long Term Acute Care)  or another facility, and those facilities are simply inappropriate. This is obviously for our U.S. audience — LTACs do not exist in other English-speaking countries.

The fact that she’s been intubated for 2 weeks and now has a tracheostomy tells me she had significant respiratory failure from the stroke. The tracheostomy was likely placed because they anticipated she would need prolonged ventilation or couldn’t protect her airway. If she’s on 6 L of oxygen via tracheostomy collar and tolerating it well, that’s actually a positive sign — but it doesn’t mean she’s ready for discharge to a facility that may not have the expertise to manage her.

What about long-term ventilation? Here’s something the hospital probably isn’t telling you: if your grandmother can’t be weaned off the ventilator completely, or needs long-term tracheostomy management, there’s another option besides ICU or another facility. This is where Intensive Care at Home becomes relevant as a long-term solution to keep your grandma out of ICU predictably and permanently. Most families don’t realize that patients with long-term ventilation, tracheostomies, or even those needing ventilation without a tracheostomy, or a tracheostomy without ventilation, can be cared for at home with proper 24/7 intensive-care-level nursing support, because Intensive Care at Home specializes in 24/7 home ventilation management, tracheostomy care at home, avoiding ICU readmissions, and keeping families together. In some cases, it might be palliative care at home if that becomes the appropriate and chosen paths for all parties.

Instead of sending your grandmother to a long-term acute care hospital or skilled nursing facility, where the quality of care is questionable and non-existent, and family access is limited, you could bring her home with professional support — again, 24-hour intensive care nurses. This is especially important if she requires long-term ventilation with or without a tracheostomy, if she can’t be weaned off the ventilator in the hospital’s timeline, and you want to avoid both a long-term stay in ICU and a transfer to another facility, because your goal is to keep her comfortable and with family.

So what should you do right now? Here’s your action plan, Mellie:

1. Request all medical records immediately, in writing. You have a legal right to these records under HIPAA (Health Insurance Portability and Accountability Act). Don’t wait — get them now.

2. Schedule a consulting call with myself or one of my team members at intensivecarehotline.com before the meeting — or even better, get me in the meeting — because we need to review all her medical records together, understand her clinical trajectory, prepare you with specific questions, and develop an advocacy strategy. We will join the meeting with you so that you have someone on your team who speaks the medical language and can challenge them on any level.

Never go alone into these meetings, because they will walk all over you if you don’t have someone who speaks their language. During the meeting, we ask the critical questions: What specific clinical criteria is she not meeting for continued ICU care? I can tell you straight away she is meeting ICU criteria, because she’s got a ventilator and a tracheostomy. What are her current ventilator settings and weaning parameters? What are her oxygen requirements, and what’s the trend over the past week? What complications or risks exist if she’s transferred? What’s the plan if she deteriorates at another facility? Why is the PEG tube being pushed, and what happens if we continue to refuse? I can tell you a nasogastric tube is perfectly fine. Also, if patients are pushed to LTACs or other facilities prematurely, they will bounce back into ICU, causing more harm and damage to your grandma, who’s already extremely vulnerable.

Next, don’t agree to anything on the spot. Tell them you need time to review their recommendations, time to review the medical records, and time to consult with your advisors — which is us. Explore Intensive Care at Home as a realistic alternative for your grandma, especially if she needs ongoing ventilation, with or without a tracheostomy, or a tracheostomy without ventilation.

You need to understand the hospital’s tactics, because let me be very clear about what’s happening here: the hospital is using a coordinated pressure campaign to push your grandma out. When the social worker, case manager, their boss, and all the doctors want to meet with you at once, this is not a collaborative discussion — it’s an orchestrated discharge push and potentially bullying. They’re banking on overwhelming you with authority figures and perceived power, pressuring you to make a quick decision, trying to make you feel guilty for using hospital resources, and framing discharge as what’s in your grandma’s best interest when it’s really what’s best for their bottom line.

Don’t fall for it. You have the right to question their clinical reasoning, demand more time if she’s not stable, refuse transfer if it’s not medically appropriate, and explore all options, including home care.

Can they force discharge legally? Hospitals can’t initiate discharge even if you disagree, but they must follow proper procedures. You have the right to appeal, and they must prove that she no longer needs intensive care — which is not the case — and that it’s safe, which it’s not. If they discharge her inappropriately and prematurely and she deteriorates or has to be readmitted, that creates liability for the hospital. That’s why having medical records and expert review is so powerful — it holds them accountable.

If you’re watching this on my YouTube channel and you’re in a similar situation, comment and subscribe to my YouTube channel, and subscribe to our email newsletter at intensivecarehotline.com, because these situations happen every single day to families in intensive care all around the world. Hospitals are increasingly aggressive about discharge, and families need to know their rights and how to protect their loved ones.

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.

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 e-books and 21 videos that I’ve personally written and recorded. And 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 the best care and treatment always.

And all of that you get at intensivecarehotline.com. Call us on one of the numbers at the top of our website or simply send us an email to support at intensivecarehotline.com with your questions.

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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.