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Quick Tip for Families in Intensive Care: My Mother’s in ICU After CABG (Coronary Artery Bypass Graft) with Complications, ICU Wants Hospice, Can I Take Her Home?

Hi, it’s Patrik Hutzel from intensivecarehotline.com with another quick tip for families in intensive care.

So today, I have a question from Morgan who says,

“Hi Patrik,

My mom is in ICU after an emergent coronary artery bypass graft, also known as CABG about six weeks ago. They said she has been in ICU for too long and we can either take her home on a ventilator or take her to hospice and let her die. Before all of this, she had no prior health problems other than breast cancer, 15 years ago. She survived chemotherapy and radiotherapy.

She had complications during a cardiac catheter procedure which resulted in a coronary dissection and cardiogenic drug which is the reason for an emergent coronary artery bypass graft, also known as CABG. She had multiple complications postoperatively including bleeding, heart failure, and three days of CRRT (continuous renal replacement therapy), her kidney functions are close to normal now.

She was on sedation for 14 of 21 days in the cardiac ICU before going to a regular ICU. On admission to ICU to a regular ICU, we were told she had severe sepsis and two small strokes that were discovered once a CT scan was done at the ICU. She also had to get a tracheostomy during her stay in the cardiac ICU since she was unable to come off the ventilator before going to the regular ICU.

Since the open-heart surgery – CABG, her ejection fraction is 40%, but we are now being told she has metabolic encephalopathy since she is not consistently responsive to commands and has been back on sedation for 14 of her 29 days in ICU.

She has also been failing her ventilation weaning. I believe this has to do with the fact that she has been back on sedation due to anxiety and becoming tachypneic. Her settings are FiO2 of 30% and the PEEP of 5. We feel the ICU team are giving up on her because she’s costing them too much time, resources, and energy. They are also making me feel guilty as if I’m making her suffer, but if there is any hope, I want to give that to her. Any advice would be helpful.

Thank you so much.”

Thank you, Morgan, for sharing your mom’s journey here. I think, in the bigger scheme of things, you have to keep in mind six weeks in ICU after many complications, it’s not necessarily a long time. As long as you take responsibility for what’s happening, as long as you take responsibility for managing the situation, there is always hope. Most families that don’t take responsibility, which don’t get help, of course, they lose hope. If you think that the ICU team can do whatever they like, then there’s not much hope for you, but I don’t think that’s what you are thinking here at all.

First off, I presume you are the power of attorney. I also presume that you have looked at all of your options. For example, with going home, there is Intensive Care at Home. However, it also looks to me like she might be on minimal ventilation settings and therefore, maybe she can get off the ventilator because then going home will be so much easier if she’s off the ventilator. Now, with her ejection fraction at 40%, the question is, how are they treating it? Is she still on inotropes or vasopressors? Is she on milrinone, for example? Is she on dobutamine? Or is she getting any other tablets to manage the heart failure?

Also, I understand she had some strokes and now she’s dealing with metabolic encephalopathy. Can that be treated? Have you looked at that? Have they looked at that? Rather than them being negative, are they being proactive about dealing, treating the stroke, dealing with the metabolic encephalopathy? Have they found out the cause of the metabolic encephalopathy could be simply that it’s the kidney failure?

You are saying she’s consistently not responsive to commands and if she’s been back on sedation for 14 of her 29 days, why is that? If she’s having a tracheostomy, she shouldn’t be on sedation. Why is she on sedation? Is there something else that’s happened? Did you have any other cardiac issues that prompted them to put her back in a coma? Especially if she’s not responsive, she should absolutely not be on any sedation.

Now, here’s another question. Has she mobilized? Has she been getting out of bed? Is she too unwell for that? Is her cardiac condition potentially stopping her from getting out of bed? But I argue an ejection fraction of 40% will not stop her from being mobilized. A lot of ICUs are doom and gloom and they’re negative because they’re not doing the work that is required to rehabilitate a patient i.e. doing all the hard work, mobilizing a patient, physical therapy, giving them good nursing care.

She now might be perceived as a “long-term patient in ICU” rather than being a patient where the situation can be improved. I think what really needs to happen here is she needs to be completely off sedation. They need to treat the metabolic encephalopathy; obviously, they need to find out the underlying cause of it. But why does she end up with a metabolic encephalopathy in the first place? Has it been treated? What’s happening with the stroke? How severe is the stroke? Have you spoken to a neurologist?

If she’s failing her ventilation weaning, has she had physical therapy? Has she had breathing exercises? Has she been out of bed? So, imagine you’re lying in bed for weeks on end and your body muscles are weak, you’re deconditioning every day, you won’t be able to breathe by yourself, you need to be able to sit up, strengthen breathing muscles, and by sitting up, not only do I mean sitting up in the bed, but I also mean sitting up in the chair. You might think this is not possible, but it absolutely is possible.

I have worked in intensive care for nearly 25 years in three different countries where I also worked as a nurse manager for over 5 years. I’ve been consulting and advocating for families in intensive care all over the world since 2013. You can look up our testimonial section and you can look up our podcast section with client interviews. We have saved lives through our consulting and advocacy, and I can say that without any hint of exaggeration.

So therefore, as long as your mom hasn’t taken those steps, it’s way too early to see where this is going. If for whatever reason she can’t be weaned off the ventilator, what does your mom want? Does she want hospice? Is that something she would consider? Does she want to die, or does she want to give it another go and go home with Intensive Care at Home?

You can look up Intensive Care at Home at intensivecareathome.com for more information, where we provide a genuine alternative for a long-term stay for long-term ventilated adults and children with tracheostomies. But again, six weeks in ICU with complications and it’s actually not that long, and her ventilation settings might be low if she’s passed some spontaneous breathing trials.

Again, the biggest challenge for families in intensive care is 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. This is another classical example here that you don’t know what you don’t know, and you haven’t taken full responsibility either. It’s good that you’re reaching out now, better late than never. But this is another example when you are in a situation like that, you are in a once in a lifetime situation, and you can’t afford to get it wrong.

You cannot afford to get this wrong, Morgan. I encourage you to reach out and hire my consulting advocacy service so I can talk you through it one-by-one, look at medical records, and so forth. So, I hope that helps and explains to you what your next steps are.

Because families in intensive care need help, we have created the membership for families of critically patients in intensive care at intensivecarehotline.com when you click on the membership link, or when 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 access to 21 eBooks and videos that are specifically written and recorded for families in intensive care, all your questions are answered there. You know exactly how to manage intensive teams once you’ve gone through the material, but obviously, the shortcut is, you have access to me and my team, and in the membership as well. We talk to you directly and advise you directly.

I also offer one-on-one consulting and advocacy over the phone, Skype, Zoom, WhatsApp, whichever medium works best for you. I talk to you and your families directly. I talk to doctors and nurses directly. I’ll make sure they know that you have someone on your team who understands intensive care inside out just as much as they do. When I talk to doctors and nurses, the dynamics will change in your favor. I make sure you make informed decisions, have peace of mind, control, power, and influence. I ask all the questions the doctors and nurses that must be asked, but you haven’t even considered asking and that will make all the difference to you and your families.

We also offer medical record reviews in real time so that you can get a second opinion in real time. We also offer medical record reviews after intensive care if you have unanswered questions, if you need closure, or if you are simply suspecting medical negligence.

I also represent you in family meetings with intensive care teams. Once again, making sure you are not getting walked all over and making sure you make informed decisions, have peace of mind, control, power, and influence in those meetings because I’ve been in those meetings hundreds of times. I know what they say, what they’re not saying. I know how they will try and push their agenda in those meetings.

All of that you get at intensivecarehotline.com. Call us on one of the numbers on the top of our website or send us an email to [email protected].

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, comment below what you want to see next, what questions and insights you have, and share the video with your friends and families.

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.