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, even if you’re not a doctor or a nurse in intensive care, making sure your loved one always gets best care and treatment in intensive care.

So, today I have an email from one of our clients Cassandra, who writes:

“Hi Patrik,

My mom just went into ICU and was intubated because her carbon dioxide levels were extremely high. She’s had COPD (Chronic Obstructive Pulmonary Disease) for a while now and has been back and forth to the hospital for it. She was intubated  four days ago and she was doing well. They decided to put her in hospice and she’s still doing OK. I’m worried that there’s something else I can do to help her, but I have no idea what that is. She has one lung and had the other one removed fifteen years ago because she had lung cancer. She struggles to breathe now, and she’s in hospice. She’s just sitting around. I want to know what to do, if there’s anything I can do for her besides let her sit and wait to get worse. Is this going to take her life eventually or is there something I can do for her? I’m thinking about moving her into my house or into hospice, into home hospice just so she can be with me and my kids. I need advice on what to do. Please help.

From Cassandra.”

Cassandra, thank you so much for your question. I can hear the concern in your voice and I want you to know that you’re not alone in feeling this way. When your mom goes into hospital with COPD, gets intubated because of high carbon dioxide levels, which is also known as CO2, and then gets put into hospice, most likely without your consultation or even consent, it’s natural to wonder if there’s more you can do. So let me break this down for you.

Understanding Your Mom’s Situation

Your mom has COPD with only one lung, after having the other lung removed fifteen years ago due to lung cancer. Now she’s been intubated for four days because of extremely high CO2 levels, and the hospital has transitioned her to hospice. You’re watching her sit around, struggling to breathe, and you’re wondering, is this it? Is there anything else I can do? And once again, has the hospital consulted with you? I don’t think you are clear that hospice means end-of-life care and that there’s usually no return alive from hospice. Are you aware of that? Has the hospital consulted with you and your mom? Have you and your mom given consent to that?

And here’s what you need to understand: COPD with one lung is a serious condition. When carbon dioxide levels get extremely high, it means your mom s remaining lung is struggling to get rid of the CO2 her body produces. The intubation, i.e., the breathing tube, and your mom being attached to the ventilator, helped temporarily, but now the hospital is telling you it’s time for you to let your mom go and go to hospice.

But Is Hospice Really the Only Option?

This is where you need to be very careful, Cassandra. The hospital may be presenting hospice as the only option, but is it really? It’s only been four days since your mom has been in ICU. Are there therefore other possibilities that haven’t been fully explored?

So, here’s what you need to do right now:

1.  Get Access to All Medical Records

You need complete access to all of your mom’s medical records. This is critical. You need to see her latest arterial blood gases showing CO2 levels, other pathology and lab results, chest x-rays and CT scans, pulmonary function tests, the ICU notes from the ICU teams, doctors, nurses, physiotherapists, specialists, and the list goes on about why they decided on hospice, because you haven’t mentioned why. Any discussions about a tracheostomy or long-term ventilation, you haven’t mentioned that as an option, because a tracheostomy and long-term ventilation might be an option. Without seeing the full picture in the medical records, or by you and me talking to the doctors and nurses, you’re making decisions in the dark, and that is not acceptable when it’s your mom ‘s life we’re talking about.

2.  Book a Consulting Call

Book a consulting call with myself or with one of my team members at intensivecarehotline.com, because here’s what families in intensive care don’t realize: just because the ICU team says hospice, and your mom ‘s going to die and that’s in her best interest, doesn’t mean it’s the only path forward. Sometimes there are other options that haven’t been fully discussed or explored.

By moving your mom into hospice after only four days in ICU, it’s telling me they need the bed, they need the ICU bed, they want to save money, they don’t want to deal with a long-term patient. The worst-case scenario for an intensive care unit is to look after a patient indefinitely with an uncertain outcome, and your mom fits that criteria. So, by moving her into hospice, they will try and get rid of that problem.  Out of sight, out of mind. It’s a harsh reality, but it’s also a reality that all families in intensive care need to open their eyes to.

Next, we can review all medical records with you, have a consulting call with you and the ICU team to clarify their reasoning, ask all the questions that must be asked in a situation like that, because you don’t know what to ask, and that’s OK. Explore whether there are other options besides hospice, and exercise your right to informed consent, because it doesn’t sound like you’ve given consent to move your mom into hospice and let her die.

Sometimes ICU teams make decisions based on what they think is standard practice for COPD patients with one lung and high CO2. They also choose the one-size-fits-all approach, but every patient is different, and your mom deserves and needs an individualized approach.

Next, Consider Long-Term Ventilation Options. If you want that.

Now here’s something the hospital may not have told you about: if your mom can’t be weaned off the ventilator, there are long-term options that could keep her out of ICU predictably and permanently. This is where intensivecareathome.com comes in.

If your mom needs long-term ventilation, a tracheostomy because she can’t be weaned off the ventilator, ongoing respiratory support, even palliative care with a tracheostomy is a much better quality of end of life, because then intensivecareathome.com provides a long-term solution that allows your mom to live at home with you and your kids, rather than sitting in a hospice facility or going back and forth to ICU.

So, What Are Your Mom’s Real Options? Well, let’s talk about what might actually be possible here.

1.  Long-Term Ventilation at Home.

If your mom needs ongoing ventilation support but isn’t necessarily dying right now, she could potentially have a tracheostomy and long-term ventilation at home with Intensive Care at Home. This means you could be with your family, see your kids every day, and have quality of life beyond sitting around in a hospice or in ICU and waiting to die.

2.  She might have non-invasive ventilation such as BIPAP or CPAP.

Depending on her CO2 levels and lung function, your mom might benefit from BIPAP (Bilevel Positive Airway Pressure), Home CPAP (Continuous Positive Airway Pressure) at home. This could help manage her CO2 levels without intubation and keeping her out of hospital.

3.  She might just simply need aggressive medical management.

Maybe there are medication treatments or interventions that haven’t been tried. Without seeing the medical records or without talking with the ICU team, we don’t know what’s been explored and what hasn’t. And I can tell you from experience, most ICU teams are not even telling families half of what’s going on. We see that pretty much on every single consulting call or when we review medical records. You only get presented half of the story, and then when we dig deeper, we find out pretty quickly that they haven’t explored all options.

And the last option is palliative care at home.

If your mom truly is at end of life and hospice is appropriate, you can still have her at home with you and your kids. But you need the right support and equipment.

Again, intensivecareathome.com can help you set up the right support at home with twenty-four-hour critical care nurses, so she’s comfortable and you have professional support, which, by the way, cuts the cost of an ICU bed by fifty percent.

And because the ICU bed is needed, the intensive care team also, it’s a win-win. Saving money, freeing up the bed. That means freeing up the bed can be achieved without killing someone. Because that’s what they want to do.

Why Do Hospitals Push for Hospice for COPD Patients?

Again, here’s the uncomfortable truth. Hospitals often move COPD patients with one lung and high CO2 to hospice because they assume quality of life will be poor. Well, you better ask your mom and yourself, what do you except for quality of life? They don’t want prolonged suffering. Well, do you think your mom is suffering? Is she prepared to suffer to live? They believe long-term ventilation isn’t appropriate. They’re not aware or don’t offer home ventilation options such as Intensive Care at Home.

But these assumptions may not apply to your mom. Every patient is different and your mom deserves to have all options explained to her and to you.

So, Here’s What to Do Next:

Get copies of all medical records immediately. You have the right to these.

Book a consulting call with me. We’ll review the records with my team, talk through your mom ‘s situation and determine what options actually exist. We can also facilitate a consulting call with the ICU team to question their recommendations and advocate for your mom.

Ask These Specific Questions to the ICU Team.

Why exactly is hospice being recommended? Has a tracheostomy been considered for long-term ventilation? What would happen if we tried non-invasive ventilation at home? Are there any other medical interventions that could help manage her CO2 levels? What’s the expected prognosis with and without aggressive treatment?

Explore Intensive Care at Home for long-term care options. If your mom needs ongoing ventilation support or even palliative care with or without a tracheostomy, this could allow her to be at home with you and your kids, with professional medical support, twenty-four-hour intensive care nurses similar to ICU.

The bottom line is, Cassandra, I hear you saying loud and clearly that you want to do more for your mom than just watch her sit and wait to get worse and die. That tells me you’re not ready to give up, and you shouldn’t have to, and you know if your mom is ready to give up or not. And you would be saying it if your mom was ready to give up.

But you need information, you need access to medical records, and you need expert guidance to understand what’s really possible for your mom, given her specific situation: COPD, one lung, high CO2, and all the rest of it.

The hospital may be presenting hospice as the only option because it’s the easy way out for them. But until we review medical records and have a consulting call with the ICU team, we don’t know if that’s true. And if your mom does need long-term ventilation, tracheostomy, or ongoing respiratory support, check out intensivecareathome.com as a viable solution to keep your mom out of ICU predictably and permanently, while giving her the chance to be with family.

So go and contact me now at intensivecarehotline.com and set up a consulting call.

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 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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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.