Quick Tip for Families in ICU: Can My Husband with Tracheostomy on a Ventilator Stay in ICU Without Hospice?

“Can my husband with tracheostomy on a ventilator stay in ICU without needing hospice?”

My name is Patrik Hutzel from intensivecarehotline.com, where we help families of critically ill patients in intensive care to 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.

So, today’s question comes from Jen, who’s also one of our members because we have a membership for families of critically ill patients in intensive care, and Jen asks,

“Hi Patrik,

Can my husband on a ventilator with a tracheostomy still stay in ICU?

Tyler and Erica from hospice and I were on a three-way call, and I determined hospice is not an option because my husband, Jim, doesn’t want hospice. They can’t just discharge him into hospice, right? Okay, I guess we are right back at that same place. Just keeping him in the ICU and they can’t do anything about it. They have to keep him there. The hospice nurse was lying, trying to convince me they are going to discharge him anyway, and I will have no choice in it then. It sent me into panic mode.

I remember now your Cornell article, please advise. Thank you.

From, Jen.”

Well, thank you, Jen, for sharing this very important question.

Here’s the reality, if your husband is on a ventilator with the tracheostomy in ICU, the hospital and the ICU can’t just discharge him to hospice against his wishes. Hospice is for patients who want end of life care, with no ongoing life sustaining treatment, and patients in hospice care will inevitably die, some sooner, some later.

Since Jim doesn’t want hospice, they cannot force this on him or on you. Full stop. This is where the Cornell article is coming in that I sent to you, and I will link to the Cornell article in the written version of this blog.

Now, can your husband stay in ICU? Yes, as long as he needs ICU level care. If the ICU doctors feel he no longer needs ICU level care, still requires ventilation and tracheostomy management, then they must find an appropriate alternative, which doesn’t really exist, besides using Intensive Care at Home for home care, or potentially a step-down ICU or a high dependency ICU. But not all step-down ICU, HDU, high dependency units are actually having the skills and staff to look after ventilation and tracheostomy. So, you have to do your research.

Now, most importantly, in countries like Australia and many parts of Europe, the option of going home with specialized services like Intensive Care at Home, where patients on ventilators with tracheostomy can be safely looked after 24/7 by critical care nurses in the comfort of their own homes, is the best option here, assuming you and your husband want home care.

In the U.S., long-term acute care hospital might also be an option, but we strictly advise against it, because from our extensive experience with LTAC (Long Term Acute Care) in the U.S., they’re not equipped or safe to look after ventilation and tracheostomy. However, a lot of hospitals in the U.S. are trying to sell you on an LTAC and we strictly advise against it. I strongly advise to check out Intensive Care at Home at intensivecareathome.com as an option.

It’s a critical point also because hospitals often push or try to push families into hospice or LTAC (Long Term Acute Care)

in the U.S. because of bed management and money practices, not because it’s best for Jim in this situation. That’s why the hospice nurse was trying to convince you otherwise. But you are right, you do have a choice.

So, what should you do next? Put in writing that you and your husband do not consent to hospice. Ask the ICU what their plan is, do they intend to keep him in ICU, transfer him to a ward with a ventilation and tracheostomy, which would also not be safe, or look at other options?

Next, are they actually trying to wean him? Is he stable enough to be weaned? Can he get out of bed? Can he do some breathing exercises? Can he start some physical therapy? And of course, explore alternative options like Intensive Care at Home, so you’re not at the mercy of the hospital’s agenda.

In summary, Jen, if Jim still needs ICU care, they must keep him in ICU. They can cannot send him to hospice against his wishes. You can and should look at alternatives such as Intensive Care at Home, of course. But if you’re in the U.S., have a look at LTAC, but you’ll probably be pretty repelled pretty quickly.

The better option here is a step down ICU, if they have the skills and the right attitude to look after Jim, and actually try to help him improve, get him out of bed, get him mobilized, get him physiotherapy, physical therapy, give him good nursing care, give him some daylight ideally. But more importantly, mobilize him and try and implement a weaning plan so he can be weaned off the ventilator, go on a tracheostomy collar, but wean him off the ventilator step by step.

You’re absolutely right not to let the ICU pressure you. You and Jim are the decision makers here, not the hospital or the hospice team.

If you want to find out how to get your loved one out of ICU, and then home with Intensive Care at Home, go to intensivecareathome.com.

If you want peace of mind, control, power and influence, making informed decisions in a situation like this, so that your loved one always gets best care treatment, go to intensivecarehotline.com and call us on one of the numbers on the top of our website or send us an email to [email protected].

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.

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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.