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Quick Tip for Families in Intensive Care: How Can Your Quick Tips for Families in ICU Turn Into Laws, Preventing ICU Patients Going from ICU to LTAC (Long-Term Acute Care)

One of our clients, Susan, that we worked with wants to know how we can turn tips here into changing laws, and that’s what we’re going to talk about today.

My name is Patrik Hutzel from intensivecarehotline.com. This is another quick tip for families in intensive care.

So, Susan says,

“Hi Patrik,

How can you turn your quick tips for families in intensive care into changing laws? I spoke with you and your team a few months ago about my brother who they were trying to discharge from an ICU in a coma to LTAC or anywhere we would allow them to. Fortunately, I was able to get hospital administrators involved, and he was moved to another unit in the hospital. However, in retrospect, he should have stayed in ICU until he woke up from the induced coma he was put in.

From Susan.”

Absolutely, and that’s what we always say that clients or patients need to stay in ICU until they are weaned off ventilation, tracheostomy, and then go home. The only alternative there is with Intensive Care at Home, assuming a client or patient is medically stable on a ventilator with a tracheostomy.

In any case, thank you for the update on your brother, Susan. I am really glad to hear that you were able to advocate for him, get him transferred to a safer part of the hospital instead of LTAC (Long-Term Acute Care).

You’re absolutely right, patients in medically induced comas often require the highest level of monitoring, maintenance, and nursing care. Just day by day management of ADLs (activities of daily living), that they can’t be discharged to an LTAC. Therefore, discharging them to an LTAC, for those of you who wonder what’s an LTAC, it’s a long-term acute care facility which are, by the way, only available in the United States, not in any other countries as far as I’m aware.

So, if you discharge them to an LTAC facility too early, it can be dangerous and inappropriate. I argue it’s always dangerous and inappropriate. There is no right time to send a patient on a ventilator with a tracheostomy from ICU to LTAC because it is always dangerous and not appropriate.

Turning your experience and other families’ experience and the hard earned lessons from it into meaningful change including potential changes to laws or policies are both possible and also powerful.

Here’s a step by step guide on how to start. Number 1, document the problem clearly. I’m doing that here, I’m documenting here very clearly in my blog, in my YouTube videos what problem is, because all the content that I’m making here and recording here, it’s all user-driven. As you can see, I’m reading out emails from clients, reading out emails from members, and discussing cases from members.

So, it’s really important that you keep doing that. Document the problem clearly, write down what happened, what almost happened, the risk of early discharge in a coma, what you did to intervene, what should have happened, the standard of care you believe should be in place, and the outcome. This becomes the foundation for a personal case study or a public story to raise awareness.

Once again, that is what we are doing right here. But I also need your support to help me with that. You got to keep your case studies coming, and you got to keep asking for help when you have a loved one critically ill in intensive care because if you’re not doing that, you’ll be doomed.

Number 2, identify the policy or legal gap. Ask what allowed this to happen. Was it a lack of regulation? Is it a loophole in the hospital discharge procedures? Is it inadequate standards for ICU transfers? Also, is it you as a family that is not informed about your rights?

The biggest challenge for families in intensive care is that you don’t know what you don’t know. You don’t know what to look for. You don’t know what questions to ask. You don’t know your rights, and you don’t know how to manage doctors and nurses in intensive care. We see that all the time.

Next, is it in adequate standards for ICU transfers? For example, there’s currently no law requiring ICU patients to remain in that unit while in a medically induced coma. If insurance stops covering it, big problem. However, I also say that we have successfully advocated for families to keep their loved ones in ICUs as long as it’s medically and clinically appropriate.

Also, while we’re talking about hospital discharge policies. I argue every hospital or ICU discharge policy will say that a critically ill patient cannot leave ICU and go to an LTAC without patient or family consent, and we have proven that over and over again.

So, a lot of it comes down to your level of education. How much do you know? How far are you prepared to go? Are you prepared to go to hospital executive? Are you prepared to go to the media? And the list goes on.

Number 3, connect with advocacy groups such as intensivecarehotline.com. You certainly don’t have to do this alone. Many national and state organizations work on improving patient safety, hospital accountability, and long-term care standards. Some examples are intensivecarehotline.com, but also National Patient Advocate Foundation, Center for Medicare Advocacy, and Public Citizen’s Health Research Groups. We and those organizations can help you package your story, develop policy proposals, get legal insight, and mobilize others. Also, I would include the media here as well.

Number 4, engage legislators. Start with your state representative or senator. Bring them your documented story and a simple ask, i.e., introduce or support a bill requiring medically induced coma patients to remain in ICU or step down ICU until they regain consciousness unless there’s a medical justification. Legislators often respond to real stories with a clear injustice. We always advocate for that here that you should go to your local state representative or government representative or senator.

Next, I already mentioned it, but I want to mention it as a stand-alone item. Use public pressure in media. Write an op-ed or personal essay for a local paper or a national platform. Share your story on social media with a call to action. Consider doing interviews, especially if others have faced similar treatment.

I offer you here to get on my podcast here at intensivecarehotline.com. I have done podcast interviews at intensivecarehotline.com, and you can watch those podcast interviews with families of critically ill patients in intensive care at our podcast section.

Number 6, propose a concrete rule or policy. Even if you can’t change a state law right now, you can push for hospital policy changes at a local level, 100%, that is the low hanging fruit here. State health department guidelines, Medicare, Medicaid, and other health insurances administrative rule update.

There’s a lot you can do. But we can’t do it without you, you need to keep talking to us and you need to seek help for your loved one in intensive care on Day 1. If you’re not doing that, you’ll be fighting an upbeat battle, and you’re almost losing ground by the minute.

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 critical 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 for our clients in intensive care.

You can verify that if you go to our intensivecarehotline.com testimonial section at intensivecarehotline.com or if you go to intensivecarehotline.com podcast section where we have done client interviews. They are sharing their experience. Because our advice is absolutely life changing, we have helped so many families in intensive care too save their loved ones’ lives, that’s why it’s life changing.

You can join a growing number of members and clients that we have helped over the years As a matter of fact, we have helped hundreds if not thousands of families in intensive care here at intensivecarehotline.com.

That’s why I do one on one consulting and advocacy over the phone, Zoom, Skype, 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 can’t afford to get wrong. I make sure you ask the right questions. I make sure you understand everything that’s happening with your critically ill loved one so that you can ask the right questions and get the right outcomes. I also talk to doctors and nurses directly if you want that with you on your behalf or on a three-way call, or I set you up with the right questions to ask because I ask 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 if 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. 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 videos and 21 e-books that only are exclusively accessible to our members. All of that will help you to make Informed decisions, have peace of mind, control, power and influence, making sure your loved one gets best care and treatment always.

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

If you like my videos, subscribe to YouTube channel for regular updates for families in intensive care. Click the like button, click the notification bell, share the video with your friends and families and comment below what you want to see next, what questions and insights you have.

I also do a weekly YouTube live where I answer your questions live on a show. You will get notification for the YouTube live if you are a subscriber to my YouTube channel, or if you are a subscriber to my intensivecarehotline.com email newsletter at intensivecarehotline.com.

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.