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If you want to know what you should do if an intensive care team or an ICU team is trying to send your critically ill loved one to hospice or palliative care from ICU, stay tuned. I’ve got news for you.

So, my name is Patrik Hutzel from intensivecarehotline.com and I have another quick tip for families in intensive care. 

So, one of the regular questions we get from families in intensive care is, what should they do if the ICU team is trying to send their critically ill off one to hospice or palliative care from ICU?

Now, first thing that you need to do is you need to clarify if your critically ill loved one is in a real or a perceived end of life situation. What’s the difference? Well, I’m glad you’ve asked.

A real end of life situation in intensive care means that no medication, no fancy surgery, no treatment, no therapy, no fancy equipment, no nothing will save your critically ill loved one’s life. They’re about to approach end of life. That’s a real end of life situation.

A perceived end of life situation that there’s a perception that your critically ill loved one may die. But it’s just that, it’s a perception, and that perception may or may not be a reality. We can help you to find out whether it’s real or perceived. 

Most end-of-life situations in intensive care are actually perceived. They’re not real because approximately 90% of critically ill patients in intensive care actually do survive. That is what the research is clearly showing.

So, coming back to the original question of what you should do if the ICU team is trying to send your critically ill loved one from ICU to hospice or palliative care. It’s a very emotional and complex situation, of course, if the ICU team is recommending hospice or palliative care, it often means that they believe your loved one’s condition is unlikely to improve with further medical intervention. Well, that’s a belief, which doesn’t necessarily mean it’s true.

So, here are some action steps how you can navigate the situation. First off, understand the recommendation, ask the questions. Request a clear explanation of why hospice is being recommended. What’s the prognosis? Are there any treatment options left that could improve your loved one’s condition?

Clarify the goals of care, discuss your loved one’s current condition and whether continued ICU level care aligns with your loved one’s wishes and values, which is also critically important. What does your loved one want? Do they have an advanced care plan?

Also, speak with other specialists, for example, speak with the cardiologist, the oncologist, the neurologist to get a second opinion about the medical situation because what you will also find often is that intensive care teams and specialists often don’t agree in their outlook of prognosis or diagnosis or treatment. You might find that the intensive care team wants to empty an ICU bed as quickly as possible by letting your loved one die. The specialist might say, “No, we can do X, Y, and Z.” Go and figure that out.

Also, discuss about alternatives, whether there are any other interventions, therapies or transfers to a different facility are possible and appropriate.

You may also talk to a palliative care team and how they would approach hospice. That can help you understand options as well and sometimes provide support as well. 

Once again, very important, revisit your loved one’s wishes. If your loved one has advanced care directives or a living will or has previously expressed preferences about end-of-life care, use this as a guide. If their wishes are unclear, consider what would align with their values, dignity, and quality of life.

That might also be an argument from the intensive care team. They might say it’s in your loved ones “best interest” to die because they won’t have any “quality of life”. Well, what is quality of life? Quality of life is just that it’s a perception, no more than that. It’s a perception, no more than that.

Next, seek support. Involve other family members in the decision-making process, if appropriate, and have a family discussion.

You may also seek an ethics consultation. Even though I’m not a huge friend of ethics committee in the ICUs or in hospitals because they’re often biased and they’re not independent, it may also help with, sometimes, an ethics consult to help and mediate and clarify the situation.

Of course, consider a second opinion, which is something we can help you with here at intensivecarehotline.com and advocate for more time. This is also something we help you here at intensivecarehotline.com. If you need time to process, and discuss, communicate this to the team. Let them know you want to make a thoughtful decision.

Also, understand what hospice care means. Hospice care really means end of life care. It focuses on comforting and quality of end of life rather than curation or curative treatment. But most of the time, it does mean giving up care and treatment, and patients are going to die.

But also, what is very, very important is trust your intuition. Balancing medical advice with your understanding of your loved one’s values and wishes is essential. Trust your instincts and don’t hesitate to speak up if something doesn’t feel right. So, I hope that helps you understand.

I’ve worked in critical care nursing for 25 years in 3 different countries where I worked as a nurse manager for over 5 years in intensive care, and 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 on our testimonial section at intensivecarehotline.com. You can verify it on our intensivecarehotline.com podcast section at intensivecarehotline.com, where you can listen to and watch some client interviews that we’ve done. They will share how we helped them to save their loved ones’ lives.

We have helped hundreds and hundreds of members and clients over the years to improve their lives instantly when they have a loved one critically ill in intensive care, including saving many, many lives for our clients as part of our advocacy, understanding intensive care inside out.

You can also become a member or a client by going to intensivecarehotline.com, of course, where I offer one-on-one consulting and advocacy over the phone, Zoom, Skype, WhatsApp, whichever medium works best for you, and I talk to you and your families directly. I talk to doctors and nurses directly. I handhold you through this once in a lifetime situation that you simply can’t afford to get wrong. When I talk to doctors and nurses directly, 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 go to 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 have personally written and recorded to help you to make informed decisions, have peace of mind, control, power, and influence, making sure your loved one gets the 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 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 from this video, and share the video with your friends and families.

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.

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