My name is Patrik Hutzel from intensivecarehotline.com, and this is another quick tip for families in intensive care. At intensivecarehotline.com, we improve the lives for families of critically ill patients in intensive care instantly so that you can 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.

Now, in today’s video, I had a heartbreaking but very real and common email that landed in my inbox from a daughter called Cindy, whose 88-year-old dad is on a tracheostomy and ventilator in a long-term acute care facility in the USA after a bad reaction to immunotherapy for T cell lymphoma, he can’t be weaned off the ventilator. The family signed a DNR because they thought they were supposed to and now his heart rate has spiked to 160, and he has been sent back into ICU.

“Hi Patrik,

My dad is 88 years of age, on a tracheostomy and on a ventilator in an LTAC facility. He had a bad reaction to immunotherapy treatment for T cell lymphoma; they can’t seem to wean him from the ventilator and tracheostomy.

We signed the DNR because we thought we were supposed to. Now his heart rate went to 160 breaths beats per minute, and they put him in ICU.

What do we do now with the DNR in place and his heart rate at 160?

-Cindy”

Now first, Cindy, well done for reaching out and for staying so closely involved in your dad’s care. Families who ask sharp questions like yours are the families who get better outcomes for their loved ones in ICU. You are already doing exactly what you should be doing, which is advocating.

Let’s break down what’s really going on, what your options are and what a DNR does and doesn’t mean.

Now, I have been working in critical care and ICU nursing for over 25 years in 3 different countries where I have worked as a nurse manager in intensive care for over 5 years, and I’ve been consulting and advocating for families in intensive care here at intensivecarehotline.com since 2013. We’ve been consulting for families all over the world, but mainly in the US, Canada, Australia, UK, India, but really in all other countries around the world as well.

I can very confidently say that we have saved many lives for our clients in intensive care, and you can verify that checking our testimonial section at intensivecarehotline.com also by listening to or watching our podcast at intensivecarehotline.com, where we have done client interviews.

So, Let’s go back to Cindy’s dad because he’s got 3 things going on at once, and each one matters for what happens next.

A tracheostomy and mechanical ventilation that he hasn’t been able to be weaned off following a bad reaction to immunotherapy for T cell lymphoma.

A transfer from LTAC, which is long-term acute care, back into ICU because his heart rate has jumped to 160 beats per minute, a heart rate that high in an 88-year-old on a ventilator is a medical emergency that needs to be worked up properly, not just managed.

A DNR (do not resuscitate) order that was signed under pressure and without. It sounds like a clear explanation of what it actually covers and what the benefits and what the disadvantages are of signing a DNR, let alone whether it’s legal or not.

A heart rate of 160 beats per minute, this is called tachycardia in a ventilated tracheostomized 88-year-old with a recent immunotherapy reaction needs a proper workup before anyone assumes this is just the end.

In my over 25 years in intensive care and critical care, which also includes being the managing director and founder of intensive care at home, the most common causes of heart rate spikes like this are

1. Sepsis or infection. Tracheostomy patients are at high risk of chest infections and Lyme infections. Blood cultures, sputum cultures, and a chest X-ray should be done.
2. Cardiac arrhythmia such as A cardiac arrhythmia such as atrial fibrillation or Afib or SVT, this needs an ECG and often a cardiology review and it’s frequently treatable.
3. Pain, agitation, or ventilator asynchrony. If he’s fighting the ventilator or in discomfort, his heart rate will climb. This is fixable with proper sedation and ventilation settings, not a reason to give up.
4. Dehydration or an electrolyte imbalance such as potassium, magnesium, sodium. Very common in LTAC patients and easily corrected.
5. A delayed reaction related to immunotherapy itself, including cytokine release syndrome, CRS or immunotherapy related cardiac inflammation. The oncology team should be looped back in.

The point is this, a heart rate of 160 beats per minute has a cause, and that cause is very often reversible. It is not automatically a sign that there’s nothing more that can be done. That’s a conclusion, not a starting point. But the issue is that with all the clinical scenarios that I just mentioned that he needs to go back into ICU, LTAC couldn’t treat a low potassium or magnesium. It would be very difficult for LTACs to get the oncology back in, the cardiologist back in because they simply don’t have the resources for that.

Why can’t he be weaned off the ventilator?

Weaning an 88-year-old off a ventilator after a tracheostomy, especially following a serious immunotherapy reaction, is genuinely hard, but hard and impossible are two very different things.

Common reasons weaning stalls in LTAC include, but are not limited to it, to the following.

1. Muscle deconditioning and general weakness after prolonged critical illness in ICU.
2. Ongoing sedation or medication effects that blunt his own drive to breathe.
3. Unresolved infection or inflammation, including any lingering effects of the immunotherapy reaction.
4. Secretions that aren’t being cleared aggressively enough. This needs physiotherapy, suctioning, and sometimes cough assist management.
5. In a weaning plan that isn’t structured, in my experience, a lot of LTACs simply do not run proper daily spontaneous breathing trials or tracheostomy collar trials the way a dedicated weaning-focused ICU or home ventilation team such as Intensive Care at Home would do.
6. They don’t have ICU-trained staff. Very few LTAC have ICU-trained staff, and they claim on their websites there that they are competent in ventilation weaning, and that is simply not the case. It’s often not true because they don’t have ICU-trained staff, right?

And my advice has always been for over a decade – do not let your loved one in the US go from ICU to LTAC, full stop. Have a look at the LTAC review pages, what families actually say about the LTAC. It’s pretty bad overall across the United States.

And these are the questions what Cindy needs to ask specifically in writing, what specific weaning protocols have been tried, how often, and what the results were. Let’s now look at treatment options for Cindy’s dad. Based on what Cindy has described, here’s what I’d be asking the ICU team to action and what I’d want confirmed before any conversation about limiting care goes any further.

1. Full septic workup, blood culture, sputum culture, urine culture, chest x-ray, inflammatory marker, CRP white cell count.
2. 12-lead ECG and cardiology review to identify or rule out an arrhythmia driving the heart rate of 160.
3. Electrolyte panel: potassium, magnesium, calcium, sodium and correction of any imbalance.
4. Review of sedation, pain relief and ventilation settings to rule out agitation or ventilation asynchrony as the driver.
5. A structured, documented weaning plan with daily spontaneous breathing trials or tracheostomy collar trials run by clinicians experienced in ventilator weaning, not just wait and see.
6. Oncology input on whether tachycardia could be linked to the immunotherapy reaction itself, including checking for immunotherapy-related cardiac inflammation.
7. A clear written explanation from the treating ICU consultant and ICU team of what the actual diagnosis, prognosis and treatment plan is in plain English, not vague reassurance.

Cindy, you’ve already done the hardest part, you noticed something was wrong and you escalated it. That’s advocacy and it’s exactly what saves lives in ICU. Keep asking, keep pushing for a diagnosis before anyone talks about limiting treatment.

Why do you need access to all your dad’s medical records, Cindy?

This is one of the most important things I say to every family I speak with, request full access to your dad’s medical records today, not a summary from a nurse at the nurse’s station, the actual complete medical records.

You are legally entitled to this, medical records will show you exactly what weaning attempts have been made, when and how he responded. What the working diagnosis is for the heart rate spikes and what tests have actually been done. Blood results, imaging, medication charts, and progress notes from the treating doctors. The exact circumstances and wording around when and how the DNR were discussed and signed.

Once you have the medical records, you and your family can ask specific informed questions instead of being told. There’s nothing more we can do. And having to take that at face value. This is where a consulting call with myself and my team alongside an ICU consulting physician makes a real difference. We go through the records with you and translate the medical jargon into plain English, so you know exactly what’s being done, what hasn’t been tried yet, and what to ask for next.

Let’s now look at the DNR, what it actually means and why it’s often used and overused as the easy way out.

You signed DNR, Cindy because you thought you were supposed to. This happens constantly and it’s one of the most damaging misunderstandings I see in ICU and LTAC settings. A DNR, a do not resuscitate order, strictly speaking, means one thing only. If your dad’s heart stops, the team will not perform CPR or attempt to shock his heart back into rhythm. That’s it.

A DNR is not and was never meant to be a blanket instruction to withhold treatment. Stop investigating a heart rate of 160, stop antibiotics, stop weaning attempts or scale back care and treatment. In practice though, ICU hospitals and ICU treat assigned DNR as a green light to quietly stop trying, to deprioritize a patient, to stop chasing a diagnosis and to shift the conversation towards comfort care.

Far sooner than is warranted, it becomes the easy way out, a document that lets a busy ICU team justify giving up on active treatment, rather than doing the harder work of finding and fixing what’s reversible. If the DNR is still in place for your dad, that is your family’s right, but it should only ever cover CPR in the event of a cardiac arrest. It should not be used as a reason to stop investigating why his heart rate is 160 or to stop trying to wean him off the ventilator.

You are entitled to ask in writing for the team. You are entitled to ask in writing for the DNR scope to be clarified with the treating team and to insist that active treatment for reversible problems continues regardless of that DNR being on file. But Cindy, this is exactly the kind of situation where an independent consulting call makes a difference between feeling powerless and feeling in control and getting better outcomes.

When you speak with me directly or a member of my intensivecarehotline.com team, alongside our ICU consulting physicians, we help you:

1. Understand precisely what’s happening medically with your dad in plain English.
2. Go through his medical records line by line so nothing is glossed over.
3. Prepare the exact questions to put to the ICU team about the heart rate, the weaning plant, and the DNR.
4. Push back respectfully but firmly if you feel the team is moving towards withdrawing treatment too quickly.
5. Educate you and the ICU team about your rights.

And the best next step for you is to reach out to me directly by calling me on one of the numbers on the top of our website at intensivecarehotline.com. Or book an appointment with me, there’s a scheduled appointment button on the website, send me an email to [email protected]. Let’s now also look at the long-term option, keeping loved ones out of ICU for good with Intensive Care at Home.

If your dad ultimately can’t be fully weaned off the ventilator or needs to keep his tracheostomy long-term, being stuck cycling between LTAC and ICU is not the only option. Through intensivecareathome.com, my team provides tailor-made long-term home ICU level nursing care for adults and children at home who need, either invasive ventilation with tracheostomy at home or non-invasive ventilation such as BiPAP or CPAP at home without tracheostomy. Tracheostomy and management without a ventilator at home. Ventilator weaning at home, all run by 24-hour critical care registered nurses or palliative care at home, if that becomes the right path for your family, delivered with dignity, privacy, and holistically at home, surrounded by family, not in a facility.

With Intensive Care at Home, we are currently operating all around Australia and all major capital cities, all regional and rural areas, basically in all states and territories. We are ISO 9001, 2015 accredited as well as NDIS registered. And we employ hundreds of years of critical care nursing experience combined in the community.

It means that a patient like Cindy’s dad can be kept out of ICU and LTAC predictably and permanently, whether he’s on a ventilator long-term, has a tracheostomy, or needs palliative care support at home, where families want their loved ones to be. You can find out more, including our accreditation and home ventilation guidelines at www.intensivecarehome.com, and if you’re watching this, if you’re in the US, in the UK, in Canada, in India, anywhere around the world, and you’re interested in Intensive Care at Home, for your loved one, please reach out to us as well. We can help you there too.

The bottom line is this, Cindy, your dad’s heart rate of 160 needs a proper diagnosis and involvement from a cardiologist before anyone talks about what it actually means. The DNR you signed only covers CPR in cardiac arrest. It’s not and should never be treated as permission to stop investigating or stop treating, get the full medical records, ask the direct questions about the workup and the weaning plan, and get an independent second opinion through a consulting call with myself before you accept that there’s nothing more that can be done.

And if long-term ventilation or tracheostomy care at home ends up being the right path for your dad, that option exists and it works. And it has been working since 2012. And if you’re a family member sitting in an ICU or LTAC right now with a loved one on a ventilator facing pressures over a DNR or being told weaning isn’t possible, reach out to us at intensivecarehotline.com, call me on one of the numbers on the top of our website, or book a consulting call with me through the scheduled appointment button or simply send us an email to [email protected]. You don’t have to work this out alone.

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.

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Your FREE Download: FAQ_Dad On Trach – Vent- Can-t Wean- DNR Signed- Heart Rate 160 What To Do Now

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.