This is another episode of “YOUR QUESTIONS ANSWERED“ and in last week’s episode I answered another question from one of my clients and the question last week was

CASE STUDY: MY DAD’S BEEN IN ICU FOR SEVERAL WEEKS WITH ARDS, CARDIAC ARREST AND DIALYSIS! HE’S GOT A TRACHEOSTOMY, DOES HE HAVE A REALISTIC CHANCE OF SURVIVAL? (PART 4)

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 answer another 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 a heart attack! The ICU doctors want to stop treatment against our wishes and let her die, what should we do? (PART 1)

Hi Patrik,

my 56 year old sister had a bleed at the balloon pump (IABP) insertion site and has an infection at the site also.

She has had an Aortic Valve replacement for severe aortic stenosis about a week ago. They told us she has a very weak heart which is why she needed the balloon pump after surgery!

She is also in an induced coma on sedation, needing ventilation and a breathing tube.

My sister is also a diabetic and is now in acute kidney failure on the Dialysis machine!

Related articles/videos:

• WHAT IS AN INDUCED COMA AND WHY IS MY CRITICALLY ILL LOVED ONE IN AN INDUCED COMA?
  
  

• Why your critically ill loved one might need Dialysis(Kidney machine) or Haemofiltration for Kidney Failure(Renal Failure) and is having a Dialysis machine attached to them!

They have advised us that she will not survive long without the balloon pump/IABP.  The doctor whom had initially told us that he would do the surgery if my sister was able to walk with Physical Therapy during the family meeting stated that he never told us that and that he had no intention of doing her surgery and that my family could ask a doctor at any other hospital to perform the needed surgery.

Thy said that if we can’t find another doctor doing the surgery they said that they will stop life support and she will die!

Please help!

Thank you

Emma

Hi Emma,

Thank you for making contact and thank you for using my  1:1 phone and email counselling, consulting and advocacy service I very much appreciate it!

It sounds like your sister is in a difficult situation.

With a weak heart after an aortic valve replacement and needing the balloon pump/IABP it shows that the surgery has most likely only been partially successful or that the heart had already been so weak that the surgery hasn’t made an improvement yet.

Being diabetic and a weak heart that already needs support from the Balloon pump/IABP the chances were pretty high to begin with that she would go into kidney failure needing the dialysis to support her failing kidneys. The reasons for going into kidney failure were so high are simply the diabetes to begin with as well as a weakened heart not pumping enough blood to support the kidneys.

Especially acute kidney failure is often temporary and most Patients can successfully come off the Dialysis machine reinstating normal kidney function.

Furthermore, with the Balloon pump/IABP supporting the weak heart, your sister would also be on other mechanisms of life support besides the ventilation and the breathing tube such as inotropes or vasopressors, namely Epinephrine, Norepinephrine and/or Dobutamine. Sometimes they may also use Milrinone or Levosimendan as well as Vasopressin to support poor heart function.

The goal for your sister for now would have been be as follows in order to stabilize with a balloon pump/IABP.

• Wean down the balloon pump/IABP from 1:1 ratio to 1:3 and then take it off completely
  
  

• Once the balloon pump/IABP has been removed reduce the vasopressors/inotropes
  
  

• If that can be achieved it is a sign that the heart is recovering
  
  

• Given that they had to remove the balloon pump/IABP because of the bleeding, chances are that the vasopressor/inotrope requirement will be going up significantly in order to make up for the loss of the balloon pump/IABP

Inotropes/vasopressors as well as balloon pump and mechanical ventilation are all life support mechanisms. Therefore your sister is being kept alive by life support mechanisms for now.

It is not a good sign that they had to take out the balloon pump/IABP and it’s also not a good sign that your sister had to go on the balloon pump/IABP to begin with after surgery, it confirms that the heart is weakened.

One of your next steps is to look at whether ECMO is an option especially in view of the doctors commenting about your sister maybe not surviving this ordeal.

Here is more information about ECMO (click on the link)

http://intensivecarehotline.com/ecmoextracorporeal-membrane-oxygenation/

Also, here is a list of ECMO centres, look for the ones in Texas (click on the link)

https://www.elso.org/Registry/SupportDocuments/CenterIDList.aspx

The next steps for you are

1. ASK THE ICU DOCTORS NOT TO REMOVE LIFE SUPPORT(VENTILATION AND INOTROPES/VASOPRESSORS AGAINST YOUR WISHES
   
   

2. ASK FOR ECMO AND THE OPTIONS AROUND IT, I.E. TRANSFER TO ANOTHER HOSPITAL/ICU WITHIN HOUSTON WHERE ECMO IS AVAILABLE
   
   

3. IF THEY ARE ADAMANT IN WANTING TO REMOVE LIFE SUPPORT, ASK FOR THEIR POLICY ABOUT “WITHDRAWAL OF LIFE SUPPORT”, BECAUSE THERE IS A VERY HIGH CHANCE THAT THE POLICY WILL NOT ALLOW THEM TO WITHDRAW LIFE SUPPORT WITHOUT YOUR CONSENT
   
   

4. ASK WHAT YOUR SISTER’S EJECTION FRACTION(EF) IS. THAT WILL GIVE US AN INDICATION HOW WEAK THE HEART REALLY IS

If the heart is really weak I can see why no other surgeon will do the surgery because of the risk attached to it.

If that’s the case then ECMO, LVAD and potentially a heart transplant are your next options and I will guide you with what to do in our next phone call.

For now, make sure that the Intensive Care team knows that you will not give up lightly and that you will stand up and advocate for your sister.

Warm Regards

Patrik

Hi Patrik,

I met with the head of the ICU on yesterday as it turns out this hospital do have ECMO.

The doctor said due to it being an emergency they placed the balloon pump/IABP.

I followed your advice and asked about the ECMO the doctor is unwilling to place my sister on ECMO.

The doctor said because they are refusing due to her surgery because of the aortic stenosis and the quality of life she will have if the surgery was done.

This doctor said that I could call around myself and find a doctor who is willing to perform her needed surgery and he doubt that any doctor would agree to perform her surgery.

I asked him not to remove her from life support and he got very upset with me and advised me to read an article pertaining to life support.

I in turn responded to him stating that I was not interested in any article but I would like a copy of the hospital withdrawal of treatment policies, as you advised. The doctor got very upset with me and I took your advise and used the term MURDER.

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!

My sister is still on the life support her nurse said that she has been weaned off two of the 4 or 5 blood pressure medications her blood pressure has been 100/40 and that they will try to wake her up on tomorrow from the sedation.  Not sure what all of this means.

Thanks

Emma

Recommended:

• 1:1 email counselling and consulting with Patrik
  
  

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

Hi Emma,

I have just tried to call you but was unable to get through so I left a message for you.

First of all, well done for standing up for what you want and for fighting for your sister!

Take it as a compliment that the doctor was upset, because 99% of the families in Intensive Care don’t question and they don’t challenge the Intensive Care team, so give yourself a pat on your back for being so strong, well done!

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!

So what does it all mean?

It means that if they have ECMO available they haven’t been transparent with you from the start, because ECMO can be used as a bridge to heart transplant especially if they are unwilling to do the Aortic valve replacement.

ECMO could also be used to let the heart recover from the weakness and recover some strength.

Sometimes, ECMO can be used to go to an LVAD and then a heart transplant.

In your sister’s situation, it sounds like she’s been placed on the balloon pump/IABP to buy time and as I said in our phone call, ECMO is nowadays being used more and more often instead of the balloon pump.

Also, good for you that you’ve asked for the policy about withdrawal of treatment, he surely wasn’t expecting that. Have you received the policy? If you haven’t received it, please ask with a deadline, I.e. you want to have the policy by 3pm tomorrow, or whatever deadline you choose.

Also, when they are referring to “quality of life”, remember that this is a perception that is up to the individual Patient and family and is not up to the Intensive Care team to judge. It’s a decision you and your family need to make what quality of life is acceptable to you and your sister and don’t let anybody else tell you otherwise.

Intensive Care teams have no understanding what the quality of a Patient might look like after they survived ICU, keep that in mind.

It’s good to hear that they have managed to wean her off some of the inotropes/vasopressors that’s a good sign especially if she can hold a blood pressure of 100/40. Please also ask if her kidneys are working, as this may sometimes happen that the kidneys are failing temporarily.

Overall, I think for now you have achieved your goal to get your sister through the next 24 hours and that should be your next goal, to get your sister through the next 24 hours again. Give me a call anytime and we can look into the situation further!

Warm Regards

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.