Quick Tip for Families in Intensive Care: 5 Questions to Ask in ICU When Doctors Talk About Futility of Treatment or Withdrawal

“5 questions to ask in ICU when doctors talk about futility of treatment or withdrawal of life support.”

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 so that your loved one gets best care and treatment always, and so that you can influence decision making fast, even if you’re not a doctor or a nurse in intensive care.

Today, I want to talk about a situation that comes up far too often for families in intensive care, and it’s also one of those situations that really drove me to start this blog here in the first place. Because when ICU teams talk about futility of treatment, withdrawal of life support or withdrawal of treatment, you need to know how to manage these situations so the ICU teams do not manage you.

Now, when you hear this, you might feel powerless, overwhelmed and pressured to “agree” with the doctors and nurses, but remember this, you are not powerless and you have many options.

Here are the 5 questions you must ask when confronted with futility of treatment or withdrawal of treatment discussions in ICU.

1. What are the treatment options instead of withdrawal of treatment?

Doctors may tell you nothing more can be done, but this is very rarely true. There are almost always alternatives such as ongoing ICU care, transfer to another ICU or step down ICU or also home care like Intensive Care at Home, you can find more information at intensivecareathome.com, where long-term ventilation and tracheostomy adults and children can be cared for at home safely and with a much better quality of life.

Another option for you here is, when talking about treatment options, you got to remind ICUs that 70 to 90% of intensive care patients actually survive, so that means the odds are actually in your loved ones favour and you have to remind them. They’re not telling you the statistics and the research, they’re only telling you the statistics and the research that helps them to stay in control of the narrative. So, do your research, know the numbers so that you can change the narrative and they don’t stay in control of the narrative.

2. What is the clinical evidence for futility?

Ask the ICU team to explain exactly why they’re calling treatment futile. Is it based on medical evidence, prognosis, or resource-driven thinking? Families often find that futility can mean expensive or taking up an ICU bed rather than strictly medical. Demand clarity. Ask about the ICU’s bed status. Ask about the ICU’s staffing levels.

Just because you might see empty beds doesn’t mean those beds are really empty. It could simply mean they don’t have the staff, meaning your loved one taking up a bed in ICU for longer than the ICU wants them to take up a bed for could also prompt them to talk about futility.

Also, keep in mind. Futility of treatment is a perception, it’s not reality. So, change the perception. Talk about your perception. Talk about what you think and what you want.

3. Is my loved one stable enough for a transfer to another ICU?

If the ICU is not willing to continue care, asking if your loved one can be transferred to another hospital, or even to a service like Intensive Care at Home for long-term care and quality of life outside of the ICU. Transfer is often possible and keeps you in control, especially depending on the country you’re in.

If you’re in a public hospital, that’s the NHS (National Health Service) in the U.K. or whether it’s a public hospital in Australia, for example, especially if you go to a private hospital, they are often willingly taking on a patient because they seem to have a different approach.

4. What is the role of sedation and pain management in my loved one’s condition?

Many patients in intensive care look worse than they actually are because they’re heavily sedated and on and on opiates. If the ICU says your loved one won’t wake up, ask whether the sedation and opiates is masking their progress, or if it hinders progress at all.

Coming off sedation and opiates often revealed signs of improvements. I can’t tell you with how many families who worked over the years where we found that patients are heavily sedated and on opiates, and they’re not waking up. They’re not given the chance to wake up.

In that case, it is much easier for Intensive care teams to talk about futility of treatment and withdrawal treatment, because 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.

5. What are the risks and benefits of continuing treatment for the next few days or weeks?

Sometimes giving a patient more time can make all the difference. Ask directly, what harm does it do to continue treatment and wait? Families often regret rushing into withdrawal of treatment, but rarely regret giving their loved one more time. Always make decisions that you do not regret in 12 months’ time. This withdrawing treatment today, letting your loved one die, you might regret in 12 months’ time. Always make rational decisions.

Also, as a bonus question. Ask the intensive care team, where’s the rush to kill your loved one? Where’s the urgency? Where’s the rush to kill a human being? It’s a very relevant question you had to ask.

Also, just for your own sanity, they can’t just stop treatment without your consent, unless your loved one has an advanced care plan that says, if they are in such a situation, they do not want to continue treatment. But if there’s no such advanced care plan, they can’t just make the decision to end your loved one’s life.

Lastly, think about, is it a real or perceived end of life situation? A real end of life situation is no treatment, no surgery, no medication, no equipment, no nothing will save your loved one’s life, and they’re going to die, and death is imminent. That’s a real end of life situation.

Most ICU patients are in perceived end of life situations, which means death is not imminent. People can be kept alive, and time will often tell you everything you need, whether your loved one can wake up, like I said, stop sedation, stop opiates, maybe try a different approach. Transfer them to another ICU and things might improve. Change the narrative is what I’m saying here. It’s very important, but to change the narrative and you can change the narrative.

So, what’s the conclusion here? When you’re being pressured into end of life decisions in ICU. It’s not about what the doctors want. It’s about what you want for your loved one, and what your loved one would want. You need to slow things down, ask the right questions, and consider all options, including home care with Intensive Care at Home, wherever possible.

At intensivecarehotline.com, we guide families just like yours every day through these difficult situations. Don’t let the ICU team make unilateral decisions that are potentially inappropriate and that you may regret down the line. Take back control now and ask these five questions so you can make the best decisions for your critically ill loved one and your family.

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.

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 in case 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, and 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 eBooks and 21 videos that I have personally written and recorded. All of that will help you to improve your life instantly, 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 my 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 from this video.

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