Hi, it’s 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, real power, real control and so that you can influence decision making fast, even if you’re not a doctor or a nurse in Intensive Care!

This is another episode of “YOUR QUESTIONS ANSWERED“ and in last week’s episode I answered another frequently asked question from our readers and the question in the last episode was

My sister is in ICU on a balloon pump and ventilated after cardiac surgery! The ICU doctors want to stop treatment against our wishes and let her die, what should we do? (PART 18)

You can check out last week’s episode by clicking on the link here.

In this week’s episode of “YOUR QUESTIONS ANSWERED“, I want to continue answering the next question from one of my clients Emma, which are excerpts from 1:1 phone and email counselling and consulting sessions with me and the question this week is

My sister is in ICU on a balloon pump and ventilated after cardiac surgery! The ICU doctors want to stop treatment against our wishes and let her die, what should we do? (PART 19)

You can also access previous episodes in this series of questions here  PART1, PART2, PART 3, PART 4, PART 5,  PART 6, PART 7, PART 8, PART 9, PART 10, PART 11, PART 12, PART 13, PART 14, PART 15, PART 16, PART 17 and PART 18 by clicking on the relevant links.

In this series of 1:1 phone and email consulting and advocacy sessions with my client Emma you’ll get real in-depth knowledge about cardiac failure in Intensive Care, how it works, the treatment and therapy options, how to wean somebody off the ventilator and most importantly, you’ll discover how to not take “no” for an answer and get strong advocacy.

You’ll witness how I can lead Emma in going from the Intensive Care team trying to coerce her and her family to agree to a “withdrawal of treatment” as being “in the best interest” for her sister to challenge that and the Intensive Care team having to do everything within their power to safe her sister’s life and turning the dynamics upside down in Emma’s favour.

That’s what happens when you have the right advice from a professional who knows Intensive Care inside out and who knows how to manage the dynamics and who can take the fear away of being intimidated by the Intensive Care team!

Enjoy this consulting and advocacy session and use it to your advantage when you have a family member in Intensive Care!

Hi Patrik,

I am just hanging in here.

It’s been rough these past few days, grateful to God that my sister is still alive.

The doctors are still pushing us to terminate treatment they had to do surgery on my sister on this past Saturday something about the area where they removed the balloon pump (IABP) the artery is exposed and there is I think the doctor said gram positive infection where they had to go in and insert antibiotic beads and do some type of washing.

They were actually supposed to go in and do the second part of this surgery on today but cancelled it for tomorrow stating that her blood pressure had dropped and was now doing better.

My sister is swollen they said that she is in fluid volume overload and just on yesterday started pulling fluid with her CRRT dialysis.

The nurse said that they have her on a wound vac where they went in and placed the antibody beads in her groin area she is now intubated again.

They intubated her on Saturday to do her surgery and because they have to take her back to surgery they will not attempt to extubate her until after all the surgeries are completed.

The nurse said that they have taken her off the vasopressin and have her on dobutamine 5 norepinephrine 10 and epinephrine 7. The nurse said her blood pressure keeps dropping but they do not want to increase the blood pressure medications my sister is still responding when I asked her if she want to continue fighting she nodded her head yes and when I asked her was she in pain she shook her head no.

The doctors and nurses are pressing us to do hospice or palliative care we expressed my sisters wishes to the doctors and nurse manager on the unit and asked them not to call us again at this time to discuss end of life issues.

Recommended:

• THE 5 THINGS YOU NEED TO KNOW IF THE MEDICAL TEAM IN INTENSIVE CARE WANTS TO “LIMIT TREATMENT”, WANTS TO “WITHDRAW TREATMENT”, “WITHDRAW LIFE SUPPORT” OR WANTS TO ISSUE A “DNR” (DO NOT RESUSCITATE) OR “NFR” (NOT FOR RESUSCITATION) ORDER FOR YOUR CRITICALLY ILL LOVED ONE! 

We need a miracle from God, everything the doctors and nurse manager of the unit is telling us seems so bleak and hopeless.

We have asked them to treat and care for her like she is living and not as if she is dying. We still have hope.

I am just so overwhelmed with this right now, my sister wants to keep fighting she said until her last breath seems the doctors and nurse manager just want us out of there, do we have the right to continue to fight to save her life?

Emma

Recommended:

• 1:1 email counselling and consulting with Patrik
   

• 1:1 phone and email counselling and consulting with Patrik

Hi Emma,

I don’t like that they had to intubate her again with her weak heart.

Also, keep in mind, why do surgery and then stop treatment again? They are contradicting themselves.

You are doing all the right things by advocating for your sister.

With the inotropes/vasopressors Dobutamine, Norepinephrine and the Epinephrine still going it just shows that the heart continues to be weak, which is obviously a concern.

The infection certainly is not helping, all you can do for now is to keep advocating for her and refer back to what she wants.

The infection also makes it more likely to keep dropping blood pressure.

Recommended:

• PEACE OF MIND, CONTROL, POWER AND INFLUENCE EVEN IN THE MOST CHALLENGING OF CIRCUMSTANCES THAT YOU, YOUR FAMILY AND YOUR CRITICALLY ILL LOVED ONE COULD POSSIBLY FACE IN INTENSIVE CARE!” 

Remember, the law in your state doesn’t allow to withdraw, stop or even limit treatment without your or your sister’s consent.

Most families in Intensive Care are completely oblivious to their rights and the doctors and the nurse unit manager know that!

That’s why I keep saying that 99% of the families of critically ill Patients in Intensive Care make no informed decisions, have no peace of mind, no power, no control and no influence!

They just get intimidated rather than seeking professional guidance, consulting and advocacy like you do!

The law is on your side and there is nothing the ICU can do to stop treatment against your sister’s or your family’s wishes.

If they did that it is murder.

Here are the resources again to that you have proof of your rights.

http://medicalfutility.blogspot.com.au/2015/03/texas-advance-directives-act-2015.html

http://medicalfutility.blogspot.com.au/2017/02/simons-law-legislation-introduced-in.html

The biggest challenges at present clinically that is causing her to go backwards are

• An infection they needed to perform surgery on to insert antibiotic beads
  
  

• Because of the surgery, she needed intubation while she was anaesthetized
   

• The heart continues to be weakened because of the ongoing inotrope/vasopressor requirement such as Dobutamine, Norepinephrine, Epinephrine
   

• The requirement of the life- saving surgery which has been postponed until further notice because of the ongoing weakness of the heart

The bottom line Emma is that your sister’s heart would still need to recover to go back to open heart surgery and have her aortic valve repaired or replaced.

Given that her heart was severely weakened early in her ICU admission and she needed the intra-aortic balloon pump (IABP) to keep her alive, after the IABP was removed she required copious amounts of inotropes/vasopressors in form of Dobutamine, Norepinephrine, Epinephrine and Vasopressin to stabilize the heart without the intra-aortic balloon pump (IABP).

With that being said, at that crucial moment in time when she went from having the IABP removed, (because the IABP can only stay in for a couple of weeks at the most) to copious amounts of inotpropes/vasopressors she should have been considered for ECMO and or VAD.

Related article/video:

HOW LONG CAN MY CRITICALLY ILL LOVED ONE STAY ON AN INTRA-AORTIC BALLOON PUMP (IABP) IN INTENSIVE CARE?

After the consideration for ECMO and/or VAD the following things could have happened.

• By having ECMO therapy it would have given your sister time to let her heart recover whilst the ECMO would take over the function of the heart
   

• After the heart had recovered it would have increased chances for your sister to go back to surgery because of the potential recovery
   

• If the heart had not recovered on ECMO, the next steps could have been to go on to VAD as a bridge to a heart transplant

Neither of those options had been explained to you and it would have been critical to

1. Explain those options to you at the time of IABP removal because the risk for the heart to decompensate was real and in fact it happened
    

2. Move swiftly on ECMO therapy to avoid the worst case scenario which seems to happen now

Recommended:

• INTENSIVECARESUPPORT.ORG membership for families in Intensive Care

As I mentioned all the way along, keeping your sister off the ventilator would have been critical but the surgery and the ongoing weakness of the heart set her back now.

I would assume your sister is now too weak to go on ECMO.

That’s why it’s so important to ask the right questions from the start!

Families in Intensive Care don’t know what they don’t know!

Keep advocating for now and keep asking questions!

Getting her off the ventilator and getting the heart to recover would be critical for her survival.

Knowing that she’s still on the inotropes/vasopressors means she continues to be weak and it will be difficult for her to come off the ventilator.

If she can’t come off the ventilator, then end of life care discussions might be appropriate but it’s still too early.

Patrik

I only have one consulting spot left for the rest of the week, if you want it, hit reply to this email and say "I'm in" and I'll send you all the details.