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 question in this series of questions from my client Sue and the question last week was PART 3 of

My Dad has end-stage HIV and is on ECMO in Intensive Care! Can he have a lung transplant? (PART 3)

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, Sue, which are excerpts from phone and email counselling and consulting sessions with me and the question this week is

My Dad has end-stage HIV and is on ECMO in Intensive Care! Can he have a lung transplant? (PART 4)

You can also look at previous episodes of this series of questions from Sue by clicking on the links here PART 1, PART 2 and PART 3

Sue continues to describe her and her Dad’s situation as follows

Hi Patrik,

my sister has accepted no more can be done and so has my brother. They will however not be going back to the hospital. I have informed the ICU consultant and he said he will call me tomorrow to discuss when they withdraw treatment.

I don’t want my mum and I to be the ones to agree to a date and time and will rather insist that they should decide on timing.

I don’t want to wake the Family up so early with a call but if you could maybe reply here with some advice that would be great.

Having read the policies I know the hospital needs a senior clinician to agree to a care plan with our family. E.g discuss what treatments to withdraw they he will no longer benefit from or that may be detrimental to my Dad and the time frames around it.

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!

Also, complete DNRCPR noting our comments. The policy on DNRCPR states patients or families can oppose resuscitation but not to stop a DNRCPR if the hospital deems this is “in the best interest” of my dad.

I don’t want it made look like that my mum and I was in agreement for withdrawal and DNRCPR as my dad is a fighter and it could make it seem like we didn’t have enough fight in us. I would rather the hospital make their decisions and note that were not happy with everything as on the face of it, because my dad’s overall experience of the NHS has been neglectful which as you know we are taking up legally.

What do you think?

Many thanks

Sue

Recommended:

• 1:1 email counselling and consulting with Patrik
  
  

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

Hi Sue,

I feel that now might be the time to meet with the ICU consultant face to face if and when you and your Mum are ready.

If you are not ready then simply don’t go, there is no rush as long as they can support your Dad on ECMO and keep him alive.

There is no doubt in my mind that your Dad will pass away very quickly once ECMO and ventilation has been removed.

Getting them to make the decision when and how to withdraw treatment might actually work for you and it is something that he mentioned to me yesterday that he wants to take away the burden from you and your family.

Normally I wouldn’t agree with this, however in your situation I believe your Dad is in a “real” and not “perceived” end of life situation.

Related article/video:

• The Difference Between “Real” And “Perceived” End Of Life Situations When Your Loved One Is Critically Ill In Intensive Care!

When critically ill Patients and their families are in “perceived” end of life situations, the suggestion of the Intensive Care team to let them make the decision when and how to withdraw treatment to take the burden away from the family can be highly manipulative from my perspective and experience and normally wouldn’t recommend to agree to this. But your Dad’s situation is different, therefore I believe it’s OK to let them make the decision and it will in fact take away the burden from you and your family.

Let them be “the bad guys” if you will.

Especially with your Dad’s overall NHS experience I understand how he would feel and I understand how you feel. Again, maybe share this with the ICU consultant if you are comfortable and see what he says.

I hope this makes sense.

As it relates to the DNRCPR I suggest the following.

Given your Dad is on such high amounts of life support, such as the ECMO, ventilation as well as significant doses of inotropes/vasopressors a DNRCPR is almost inconsequential and in your Dad’s situation of little to no use anyway.

The reason for this is simply that the high amounts of life support are constant CPR if you will, without the ECMO, the ventilation and the inotropes/vasopressors your Dad will not be able to sustain life.

To illustrate this even further, ECMO, ventilation and inotropes/vasopressors such as Noradrenaline (Norepinephrine) and/or Adrenaline (Epinephrine) your Dad could not live.

In the event of your Dad’s heart stopping or in the event of a cardiac arrest, any attempts to resuscitate your Dad’s heart would probably not be successful because of the huge amounts of life support is already having.

I do have numerous questions answered for my clients and readers from my 1:1 phone/Skype and email counselling and consulting where we discuss those issues at length and as I mentioned to you in our last phone call, almost 9 times out of 10, I highly dispute the hospitals or the Intensive Care team’s push towards a withdrawal of treatment or a limitation of treatment without family consent.

I have lots of experience in successfully helping families in Intensive Care to get the best care and treatment for their critically ill loved one, including reversing a DNR (Do not resuscitate) or NFR (Not for resuscitation) order!

In fact I have even created a manual in how to successfully reverse DNR’s and/or NFR’s as well as “withdrawal of treatment” decisions.

You can have a look at it here

• 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!

In your Dad’s situation, the goals of care have changed.

The goals of care have changed from “saving his life” and getting the best treatment possible to end of life care goals.

What are the end of life care goals in your Dad’s situation?

They are to minimize suffering and pain.

It sounds by what you are describing that your Dad is not in any pain and that he seems quite comfortable and it’s important that he’ll be comfortable and in no discomfort by the time they remove life support.

The frustrating part Sue is that your Dad’s situation could have turned out differently altogether if you had know about the options of lung transplant as well as tracheostomy early on as we discussed here.

Furthermore, his potential misdiagnosis earlier last year as MS (=Multiple sclerosis) instead of HIV is not enhancing your trust in the NHS, which is understandable.

This is why I keep saying that it’s so important to look for help and advice early on when you have a family member is in Intensive Care.

You can’t be seeking advice early enough, because as you have seen by now, you don’t know what you don’t know and chances are Intensive Care teams are not being open and transparent with you, they simply don’t take the time to explain things to you in detail.

Related article/video:

• YOU DON’T KNOW WHAT YOU DON’T KNOW WHEN YOUR LOVED ONE IS CRITICALLY ILL IN INTENSIVE CARE!

For now Sue, prepare yourself mentally for the passing of your Dad very soon, basically as soon as they remove life support.

I know this is very hard and difficult to face and once again your Dad is in a “real” and not “perceived” end of life situation.

It might also be worthwhile to have another discussion with yourself, your Mom and the ICU consultant if you feel like there are any remaining questions or if you are worried about your Dad suffering and how to avoid it.

Related article/video:

• 5 SIGNS TO LOOK OUT FOR WHEN IT’S TIME TO LET GO IF YOUR LOVED ONE IS CRITICALLY ILL AND DYING IN INTENSIVE CARE

Generally speaking, in end of life and “withdrawal of treatment” situations, in order to minimize suffering, Patients are usually receiving strong doses of sedatives such as Midazolam (Versed) and/or Fentanyl or Morphine.

Given that your Dad is already on Midazolam (Versed) and Morphine, they will increase the dose significantly by the time they are removing life support so that he will be comfortable.

I hope that helps Sue.

Let me know what other questions you have we can get on the phone anytime.

​​​​​​​

Your friend

Patrik

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