“How to stop your loved one from being discharged from ICU to LTAC (Long-Term Acute Care) or nursing home with a tracheostomy?”

My name is Patrik Hutzel from intensivecarehotline.com, where we instantly improve the lives for 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 gets best care and treatment always, even if you’re not a doctor or a nurse in intensive care.

So, today’s topic is, “How to stop your loved one from being discharged from ICU to LTAC or nursing home with a tracheostomy?” This topic comes from a real question I received from one of our members, Bridget, who says:

“Hi Patrik,

My dad has been off antibiotics since Sunday, and they’ve done another blood culture. His white blood cell count looks good, and he still has slight fluids in his lungs.

He’s been responding more and more with the Passy-Muir speaking valve, maintaining good oxygen levels but still seems sleepy and confused.

The ICU is planning to transfer him around next week to a LTAC or nursing home, but I found an inpatient rehab that takes tracheostomy patients. Would he qualify and what can we do to avoid an LTAC?

– Bridget”

Obviously, this is a question that’s highly relevant for our U.S. audience because LTACs are exclusive to the U.S. LTAC don’t really exist in any other country. LTAC stands for long-term acute care hospital.

So, let’s look at the motivation from the ICU team versus family’s best interests.

Now, this is a very common situation. Once a patient in ICU comes off the ventilator or appears “stable,” hospitals are under huge pressure to free up ICU beds, so they often push for a transfer, not because it’s best for your loved one, but because they need the bed for the next patient.

However, your loved one’s recovery should never be rushed or jeopardized just to manage hospital bed flow, and hospital bed flow should not be your concern. Your loved one’s best interests should be your concern. Unlike the ICU team wants to make you believe, you have rights as a family to question and even refuse a transfer that isn’t medically appropriate or even safe.

So, let’s look at recovery after tracheostomy and brain injury. Now let’s talk about Bridget’s dad specifically.

It’s very common for patients who’ve had a tracheostomy, infection, sedation, opiates, or a brain injury to appear sleepy, confused or weak, especially if they’ve been in ICU for weeks on end, which has been the case in Bridget’s dad’s situation. That doesn’t mean he’s not improving. It means he’s in a slow recovery phase. The brain and body take time to heal after critical illness and prolonged ICU stays.

He may also still be regaining consciousness gradually and remember, after a tracheostomy, speaking with a Passy-Muir valve takes practice and therapy. It’s normal that he can’t talk well yet, that’s why speech therapy and consistent valve views are so important.

Next, why LTACs and nursing homes in the U.S. are the wrong move from ICU right now?

Here’s the problem: Once your loved one goes to an LTAC or a nursing home, it’s very hard to get them back to ICU or into a proper rehab setting. If they do go back into ICU, it’s usually within 24 to 48 hours, because patients have been discharged prematurely and they’re bouncing back to ICU very quickly. I’ve seen it over and over and over again.

The dilemma here is that patients then bounce back into another ICU because the ICU that the patient got discharged from no longer has any beds available. It’s a tragedy that you can avoid by asking all the right questions, by being proactive and by simply putting your foot down and knowing your rights.

LTAC and nursing homes often don’t have the staffing, respiratory therapist, medical cover, or rehabilitation intensity needed for recovery for patients with a tracheostomy. In fact, many patients deteriorate quickly in those facilities due to a lack of close monitoring, due to a lack of therapy, due to a lack of staff, and specialist skills. That’s why I always say, if your loved one is still on a tracheostomy, oxygen, or still regaining consciousness, they belong in ICU or a step-down ICU, not a nursing home or an LTAC.

Let’s now look at family rights.

You can refuse the transfer; it is well within your rights. Most families in intensive care don’t know this. You have the right to refuse a transfer to LTAC or a nursing home. You can say, “We do not consent to a transfer until our loved one is medically stable and ready for the right level of rehabilitation care.” That simply includes them having a tracheostomy and/or ventilator. It is not safe for a ventilated patient or a tracheostomy patient to leave ICU and go to an LTAC or a nursing home.

The only safe discharge that can be made here is to a service like Intensive Care at Home. That is the only safe exit out of ICU for Bridget’s dad, but that’s not what we’re doing right here. We’re discussing right now how to avoid LTAC or nursing home. So, hospitals and ICUs cannot legally transfer a patient without family consent, unless there’s stable and a suitable, safe facility is available, which there rarely is, and this is also contrary to popular belief.

Most families in intensive care think that ICU teams can just do whatever they want, and they’re very good at pretending that they can do whatever they want. Well, nothing could be further from the truth, and the minute you challenge their perceived authority, you will see that actually things will change.

If the suggested facility is a nursing home or an LTAC and your loved one still needs close medical attention, that is not an appropriate or safe transfer. So, insist on keeping your loved one in ICU or transferring only to an acute inpatient rehabilitation center that has respiratory therapy and tracheostomy expertise.

Next, inpatient rehabilitation, the right next step. Bridget mentioned an inpatient rehabilitation center that accepts tracheostomy patients. That’s exactly the kind of place that can make a difference. Inpatient rehab centers provide three hours of therapy per day, physical, occupational, and speech therapy, respiratory care for tracheostomy patients, multidisciplinary support with doctors, nurses and therapists working together.

For your dad to qualify, he will likely need to participate in therapy for a few hours a day, be medically stable but still require close monitoring and show potential for improvement, which it sounds like he does. So rather than letting the hospital discharge him to an LTAC or nursing home, you should be pushing for a transfer to an acute rehabilitation instead.

So, what are your next steps? Here is what I recommend you do right now.

1. Refuse the LTAC or nursing home transfer in writing.

Say you do not consent.

2. Get the hospital discharge policy.

You will find that the hospital discharge policy will say something along the lines of… that a discharge to another hospital cannot be done without patient or family consent. If they refuse to show you the hospital discharge policy, you know what’s in there already.

3. Request access to all medical records.

So that, you can get a second opinion and that you can really find out what’s actually documented in the notes. Very important.

4. Request a family meeting with the ICU doctor, rehab specialist, and discharge planner.
5. Get documentation.

Your dad is still improving and needs a higher level of care.

6. Ask for an assessment for acute inpatient rehab.
7. If the hospital resists, contact us at intensivecarehotline.com.

We will help you get the outcomes that you want because we advocate for you, join your family meetings, talk to doctors and nurses directly, and make sure your loved one isn’t being pushed out too early.

So, in summary, don’t let the ICU push your loved one to LTAC or a nursing home too early or ever at all. They’ve come this far, don’t let poor discharge planning set them back. Keep your loved one in ICU or transfer only to an acute rehabilitation facility that can continue their recovery safely.

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.

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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.