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Hi, it’s Patrik Hutzel from intensivecarehotline.com with another quick tip for families in intensive care.

So today, I want to talk about one of our members that we’re currently working with, who has their mother in ICU with liver failure. Klein is currently in ICU on inotropes, dialysis, with sepsis and the ICU wants to withdraw treatment whereas the family wants an option of a liver transplant.

Here is what the medical notes say. Part of what we do is we review medical records for our clients so that they can get a second opinion and that they can get a different take on the situation.

So, here’s what the doctor says in the notes, “Regarding the patient’s liver transplant, she would only be reconsidered for a liver transplant if she was well enough to be discharged from the hospital. The patient is currently not a candidate for transplantation due to sepsis, severe functional inability as well as ongoing needs for inotropic support and mechanical ventilation.” Now, chances are this will only improve if she does get a liver transplant.

Now, the notes also say, “The ICU doctor stated that they have exhausted end-stage liver disease treatment and that no further escalation can be offered from their end. After the discussion with the family, two family members agreed that no further escalation of ventilation settings and inotropic support that the code status was changed to limited CPR (cardiopulmonary resuscitation) or DNR (do not resuscitate).” This is a challenge when families don’t agree on what should be the goals of care in situations like that because sometimes families don’t agree.

Let’s continue with the family meeting that took place, “The doctor explained current clinical studies explicitly including end-stage liver disease, and due to sepsis as well as severe functional inability, is not a candidate for liver transplant. Given the fact that although the patient had septic episodes, her main setback is untreatable end-stage liver disease with ongoing hepatorenal syndrome and that there is no reasonable medical expectation that the patient will ever recover for hospital discharge. Given that the patient will also by extension, never be a candidate for a liver transplant.

I explained that the patient has ongoing severe pain needs of which are currently being inappropriately managed due to concerns raised by the patient’s daughter that the patient was excessively sedated with increasing doses.

I explained that if we are continuing with ongoing life support, that it is medically inhumane and medically inappropriate to not appropriately treat the patient’s ongoing pain needs.

I further stated that in the setting of no quality of life and in a status that the patient would not want, with no meaningful chance of recovery, that it is also inappropriate to continue prolonged invasive life support, including inotropic support and renal replacement therapy.”

Again, I’ve just stopped the report here where the doctor says in the setting of no quality of life and where there’s no meaningful chance of recovery. So let me dive in on that.

What is quality of life? What is it? I don’t have the answer to it. It’s different for me than it is for you. It’s different for every single individual. What is meaningful recovery? What does that mean? What is meaningful for you might not be meaningful for me and vice versa. So, who are doctors to say what is meaningful and what is quality of life? Think about that.

Then the report continues, “Given we are already in a situation in which the overarching underlying process of end stage liver disease is untreatable I explained that no further escalation will be offered as it is medically inappropriate with no meaningful expectation of recovery.

Furthermore, I proposed removal and discontinuation of renal replacement therapy, also known as dialysis, as well as potentially removal of ongoing life sustaining therapies. We do not want artificially and inappropriately prolonged the patient’s life that the patient’s daughter would cause severe stress and harm to them if they were adamant to continue.

I think it is best characterized by what the patient’s other family members said. “As my mom’s current level of suffering would be far less than what other family members will do to us if we ever stop life sustaining therapies.”

As the substitute decision maker, I explained the responsibility is to act in the best wishes of the patient and to act based on her previously expressed wishes. It is not to succumb to external influences and pressure and potential, albeit not confirmed in person by myself, coercive effects of other family members that are not in the “patient’s best interest”.

Once again, what is in the patient’s best interest? Is it in the best interest for them to die? Ask that question. There’s often no right or wrong answer to this, in some situation, it might be best for a patient to die. But before you make that decision, it needs to be very carefully thought through. You always need to make decisions today that you don’t regret in 12 months’ time, in 24 months’ time. That’s how you need to make decisions. Would you regret letting your family member die today? Would you regret that in 12 months?

“As a result of the discussions that took place, no further escalation of ventilation settings, no further escalation of inotropic support goals of care updated to reflect this change.”

So obviously, I want to focus on what the family has to say to that. One of our members there then wrote back, “So that basically means my mom has no chance. The doctor or the ICU doctor told me I was not allowed to say no about the painkiller that it was illegal for me to say anything. Just yesterday, she was talking to my dad on the seventh right after the meeting. How long do you think she will have?”

So, it’s hard to say how long your mom will have but as long as they keep going with life support, she might have some time left. The reality is whist end stage liver failure without the outlook of a liver transplant maybe end-of-life. There’s still a small change.

Also, it comes down to do you want to prolong life because you want your mom to live at least for a few more days, weeks? That is entirely up to you and to your mom, if she can make a decision herself, ask your mom what she wants, it comes down to that as well and it is your right to hope, to wish, and to keep strong in your faith, and to believe in positive effects or even miracles.

No one knows exactly how long your mom will need to recover or to live or if she can recover at all. But one thing is for sure if you don’t try, you definitely won’t know the outcome. You got to stay strong here and you’ve got to go for what you believe in.

It is accurate that for some patients, mild doses of sedation and pain medications can be prescribed to relieve your mom from pain and suffering, if that’s what it is. You don’t want your mom to suffer unnecessarily.

Most ventilated patients who have poor level of consciousness, who are not awake yet alert and responsive, and are not fit for ventilator weaning yet, the sedation will help to prevent complications like pneumothorax, barotrauma or other injuries in the lungs due to the agitation, restlessness, fatigue, fighting the ventilator and so forth. That’s where mild or moderate sedation comes in.

Then our member continues and says, “After reading this from the doctor, I don’t want to talk to them anymore. I can’t believe they are saying those things that it’s in the best interest for my mom to just die.”

 I still believe that for now, you should keep talking to them and keep expressing your wishes. I think that is very important that you keep expressing your wishes.

“I do believe that by taking medical care away from my mom, it would harm my mom because she might die and I’m just not ready for it. I’m very sad and disappointed that the ICU team is not listening to me and that they say things about me that I’m not acting in the best interest of my mom. I do believe that I’m acting in the best interest of my mom because I want her to live, and I know she wants to live.”

So, I would also appreciate if you could do a video session with the doctors and advocate from your end, which I am very happy to do, you know where I am. If you want that for your family, if you’re watching this, that’s what we’re doing. We’re professional advocates for families in intensive care.

Then our member continues who says, “I believe the medical system here is broken and needs a lot of work and my mom should have never gotten to this point. The ball was dropped so many times, and I can see why we have made the medical system untouchable, but they can do whatever they want and have no fear of being sued or anything, which makes things worse, such a messed-up system to know they basically just want the room to put the next person in. Thank you for all your help. I really, really appreciate your help.”

Well, we are very sorry to hear what you’re going through. It’s really up to you whether you want to give up here or not, but I know from conversations that your mom wants to live and you’re just advocating for what she told you, and if that’s the best course of action, then you should keep pursuing that.

There’s plenty of time to talk about end of life, plenty of time. One thing that I’m always asking is what’s the urgency and the rush to let someone die? Where’s the urgency there?

So, I’ve worked in critical care and nursing for nearly 25 years in three different countries where I worked as a nurse manager for over 5 years and where I’ve been consulting and advocating for families in intensive care since 2013 here at intensivecarehotline.com.

We’ve been saving many lives with our consulting and advocacy, and you can verify that on our testimonial section at intensivecarehotline.com or on our podcast section at intensivecarehotline.com where we’ve done client interviews, and you can listen to what our clients are saying there.

That’s also why we created a membership for families of critically ill patients in intensive care. 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 me and my team, 24 hours a day, in the membership area and via email.

You have exclusive access to 21 e-books and 21 videos that I have personally written and recorded and those videos, e-books, as well as access to me and my team will help you to make informed decisions, have peace of mind, control, power, and influence so that you can influence decision making fast, making sure your loved one gets best care and treatment.

I also do one-on-one consulting and advocacy over the phone, Zoom, WhatsApp, Skype, whichever medium works best for you. 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, if that’s what you want me to do, then 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.

All of that, you get at intensivecarehotline.com. Call us on one of the numbers on the top of our website or 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.