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

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

Today, I have a question from Kelly, who says, ” My brother is 69, he’s critically ill with severe pancreatitis, sepsis, acute coronary syndrome, kidney failure, ARDS (acute respiratory distress syndrome)), and multi-organ failure.  His healthcare proxy, his son who’s 35, is holding on hoping for recovery.  The family is heartbroken and confused.  I’m a holistic healer with medical knowledge, but I need an objective opinion and guidance on how to help the family navigate this difficult decision, from Kelly.  And in case you’re wondering what makes me qualified to answer questions like this for Kelly.

I have worked in critical care nursing for over 25 years in three different countries, where I worked as a nurse manager for over five years in intensive care, and I’ve been consulting and advocating for families in intensive care here at intensivecarehotline.com since 2013, and I can very confidently say that we have helped many families in intensive care to save their loved one’s life. You can verify that on our testimonial section section on our website at intensivecarehotline.com, and you can verify it on our podcast section where we have done client interviews on our website intensivecarehotline.com.

If Kelly’s situation sounds like what your family is going through, stay with me, because in the next 20 minutes or so, I’m going to break down every single one of those conditions, explain what the treatment options are, tell you the questions you must ask the ICU team, and show you how to get the clarity and advocacy your family needs right now.

So let me walk you through each of Kelly’s brother’s conditions so you understand what the ICU team is actually dealing with.

First, severe pancreatitis with sepsis.

The pancreas is destroying itself, releasing toxins into the bloodstream.  The body’s immune response has gone into overdrive and is now attacking its own organs.  Sepsis from pancreatitis has a very high mortality rate, and when it causes multi-organ failure, as it has here, that mortality rate is extremely high.

Number two, acute coronary syndrome.  The heart is under severe stress.  Blood supply to the heart muscle is critically compromised.  In the middle of sepsis and multi-organ failure, the heart is already working harder than it should be, and acute coronary syndrome on top of that is incredibly dangerous.

Number three, kidney failure.  The kidneys have shut down.  He is likely on continuous renal replacement therapy, which is a form of slow dialysis that runs 24 hours a day.  Kidney failure in multi-organ failure is a major prognostic indicator.

Number four, ARDS stands for acute respiratory distress syndrome, which means the lungs are severely damaged.  It basically means the lungs are failing.

That is why he’s on a mechanical ventilator.

ARDS from sepsis can take weeks or months to recover from, and some patients never recover enough to come off the ventilator.

Number five, multi-organ failure.  Three to four organ systems are in failure simultaneously: heart, kidneys, lungs, and likely liver.  The data is very clear. The more organs that fail, the lower the survival rate and the worse the quality of life for survivors.

Number six, over one week of unconsciousness. He has been transitioned off medically induced sedation and is now on ketamine, Dilaudid, also known as hydromorphone, and methadone, powerful medications, and he has not regained consciousness.  That is a red flag that must be formally investigated with a neurological assessment if it hasn’t been done already.

Now pause here if you’re watching this and your loved one is in a similar situation.  Write down every one of these conditions. You need to be discussing each one specifically with the ICU team.

Now, let’s talk about the healthcare proxy situation because this is critical.  Kelly’s brother’s son is the appointed proxy, but the directive is ambiguous and is not being applied consistently.  That means different members of the ICU team may be interpreting the proxy’s authority differently, and that creates inconsistent decision-making.  If your loved one lacks decision-making capacity, and being unconscious for over a week clearly meets that threshold, the proxy is the primary decision-maker, full stop.

The ICU team must communicate with the proxy, document the proxy’s decisions, and apply them consistently.  If they are not doing this, you need to escalate.  Request a formal family meeting with the ICU consultant, the social worker, and the palliative care team.

Request that the proxy directive be reviewed, clarified, and documented in the medical records so every clinician caring for your brother knows what it says.  And if there’s genuine ambiguity about what the document means legally or medically, ask for a hospital ethics committee consultation.  That is exactly what ethics committees exist for, but I would double-check that all committee members are not hospital employees because if they’re hospital employees, they will decide whatever is best for the hospital.  They must be independent and not be hospital employees.

Next, let’s look at treatment options.  So what are the actual treatment options for Kelly’s brother right now?

Let me give you four of them.

Number one, full active treatment: continue everything, the ventilator, the medications, the dialysis, the cardiac support. This is what is happening now.  The question the family must ask is this: does the ICU team believe full active treatment is likely to lead to a meaningful recovery, and what does that recovery actually look like? But I also will say what is a meaningful recovery for you might not be a meaningful recovery for the ICU team, and vice versa. That should not stop you from advocating for full care and best care and treatment.

Number two, goals of care. Transition to comfort.  If the honest clinical assessment is that there is little to no realistic chance of meaningful recovery and survival, the focus might shift to comfort, palliative care, and dignity.

This is not giving up.  This is making a values-based decision that many, many families eventually come to in ICU.  I’ll also talk about a home care option here later.

Option three, time-limited trial.  Agree to continue treatment for 48 to 72 hours and then reassess. If there is no meaningful improvement, transition to comfort-focused care.  This gives the family, especially the son who is holding on for hope, a defined time frame without committing to indefinite aggressive treatment.

Option number four: limitation of treatment without stopping current care.  Continue the ventilator and medications, but agree that if his heart stops, you will not attempt cardiopulmonary resuscitation (CPR).  This is often called do not resuscitate (DNR), or in other countries it’s called not for resuscitation (NFR).  DNR means no CPR. With continuation of current treatment, it is a middle ground that many families choose, even though I advocate against it because as soon as there’s a DNR or an NFR, the hospital will wind down treatment.

I’ve seen it many times in over 25 years of critical care and intensive care nursing.  It requires further consultation, and that’s when you can come to us and explain things in detail so we can explain what it all means.  Whichever option the family chooses, it must be made with full information.  Read all medical records, attend the family meetings, ask the hard questions, and if you need help doing any of it, that is exactly what I do here at intensivecarehotline.com.  We look at medical records. I talk to you and your family and to the ICU team on your behalf and with you.  That is exactly what my team and I are doing.

Let’s now look at medical records, because Kelly mentioned she has read them all, and I think that is fantastic, but most families don’t know they can even access them.  You have the legal right to access the full medical records for your loved one, not just the summary the team gives you at the bedside. That means nursing notes, lab results, imaging reports, ventilator parameters, medication records, and every documented conversation between the ICU team and the proxy.  Request them in writing if you need to.

The records will tell you the trajectory, whether things are improving or deteriorating, and they’re essential for making an informed decision and for understanding whether the proxy directive is being followed.

Here at intensivecarehotline.com, we review medical records every day as part of our consulting process.

We know what to look for, and we can help you interpret what you are reading.  Before I finish, I want to mention something that most ICU families are never told.

If Kelly’s brother survives his acute illness but cannot be weaned off the ventilator, which is a possibility, especially with ARDS, sepsis, and everything else that’s going on, he may need invasive ventilation through a tracheostomy or non-invasive ventilation through a BiPAP or a CPAP mask, or he might need a tracheostomy without ventilation.  He doesn’t have to stay in ICU or go to a nursing home or any other substandard facility.  I also run a service, Intensive Care at Home, and you can find more information at intensivecareathome.com.

With Intensive Care at Home, we provide a third-party-accredited specialist home intensive care nursing service for ventilator-dependent patients with or without a tracheostomy.  We provide 24-hour intensive care registered nurses at home.  We have hundreds of years of intensive care nursing experience combined in the community working with our clients.  We currently work all around Australia in all states and territories, but even if you’re in the US, Canada, the UK, India, wherever you are, reach out to us if you need intensive care at home; we can help you there as well.  That means with Intensive Care at Home, your loved one can come home even if they’re stuck in ICU, with professional, round-the-clock, 24-hour intensive care nursing at home, with their family and loved ones around them, with dignity, comfort, and privacy, rather than in an ICU room for the rest of their life.

We also provide this care for patients choosing palliative care at home so they can spend the end of their life where they choose, supported by a full clinical team.

Go to intensivecareathome.com to find out more. This option exists.  We have been operating Intensive Care at Home very successfully since 2012.  Most ICU teams will not proactively tell you about it, but it changes everything for the families who find out.  Kelly and everyone watching who is going through something like this, I want you to know that you are not alone.  The ICU is one of the most complex, overwhelming environments a family can be thrust into.  And you deserve honest, objective, independent clinical guidance, not just what you can extract from a busy ICU team in a five-minute corridor conversation.

My team and I at intensivecarehotline.com are here for you.  You can call us today on one of the numbers at the top of our website at intensivecarehotline.com.   You can also book a consulting call with me there using the “Schedule Appointment”  button or send us an email at [email protected]. 

We will review your medical records, join your family meeting, ask the questions you don’t know how to ask, and advocate for your loved ones’ rights and dignity every step of the way.

If this video has helped you, like, comment, subscribe to this channel, click the notification bell, and leave a comment below with your questions so that I know what videos you want me to make.  Share this video with anyone who has a loved one in the ICU right now because knowledge is power, and it’s the most powerful tool that a family can have in the ICU in this situation.

I have worked in critical care nursing for 25 years in three different countries where I worked as a nurse manager for over five years in intensive care. And I’ve been consulting and advocating for families in intensive care since 2013 here at intensivecarehotline.com. And I can very confidently say that we have saved many lives  with our consulting and advocacy, because of our insights, and you can verify that on our testimonial section  at intensivecarehotline.com and you can verify it on our intensivecarehotline.com podcast section, where we have done client interviews.  And because our advice is absolutely life-changing, right?

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. And 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 the best care and treatment always. And 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.

And that’s why I do one on one consulting and advocacy over the phone, Zoom, WhatsApp, whichever medium works best for you. And 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. And 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, so, 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 e-books and 21 videos that I’ve personally written and recorded. And 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 the best care and treatment always.

And all of that you get at intensivecarehotline.com. Call us on one of the numbers at the top of our website or simply send us an email to support at intensivecarehotline.com 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 a show and you will get notification from 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.

Your FREE Download: ICU Family FAQ: Brother, 69: Pancreatitis, Sepsis, ARDS, Organ Failure

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.