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 4 of

My Dad has end-stage HIV and is on ECMO in Intensive Care! Can he have a lung transplant? (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 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 5)

You can also look at previous episodes of this series of questions from Sue by clicking on the links here PART 1, PART 2, PART 3  and PART 4

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

Hi Patrik,

just to let you know my dad passed away at 12.20pm UK time. I asked the ICU consultant to decide on timing and he said he would reduce the oxygen in 30mins time and call me to let me know when he had passed. That was at 11.30am. By 12.20pm I got a call from the nurse, not the ICU consultant stating they reduced the oxygen as soon as I had my call with the ICU consultant and 40mins later my Dad had passed.

I’m glad it didn’t take long but I’m disappointed that the ICU consultant didn’t keep to his word on timing and that he would personally call me back. That being said we have peace now. As expected my brother is finding it the most challenging but he has us to support him.

Big thank you for your care and support. Much appreciated.

I will pursue the clinical negligence claim as I think that is important. Will keep you posted on that.

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’m very sorry that your Dad has passed way.

I’m glad to hear that you are having peace despite this very very difficult situation that unfolded in recent weeks.

In a sense I’m glad that your Dad didn’t have to go through a lengthy process when they started to reduce ECMO support and when they started to remove oxygen.

As I predicted in our last phone conversation, your Dad was so sick and on such high levels of life support that he couldn’t survive without it.

It’s disappointing to hear that the ICU consultant didn’t keep his word and that he didn’t inform you personally when your Dad had passed.

I’m very happy to set up another phone call to debrief if you feel like it helps you and your family.

I could also be looking at some of the medical notes if you feel like it may help.

I wish you and your family strength, faith and determination to deal with the loss of your father.

Furthermore, to add on to the bigger picture, now I have had chance to look through all the documents you sent through over the last couple of days.

Especially with all the documents you sent through in relation to visits your Dad had to the Neurology department, you probably have good evidence that they may have not only mis-diagnosed your Dad especially in light of the late diagnosis of HIV.

I’ve also had a closer look at the lung transplant policy again, especially the selection/non-selection criteria.

Again, there is nothing in there that suggests HIV would have been a contra-indication for a lung transplant.

It is even suggested that Patients on ECMO and mechanical ventilation can be listed for lung transplantation, which is something that I have certainly witnessed on a few occasions in ICU.

Patients in Intensive Care being listed for a lung transplant are almost always on ventilation and/or ECMO.

Two relative contraindications for your Dad to be listed for a lung transplant would have been

• Age>60 years
  
  

• Weight- Malnutrition with BMI less than 17 kg/m2

What’s also important to notice is that at least the ICU consultant was correct in his clinical judgement that as soon as the ECMO support would be reduced your Dad was not able to sustain life. I am and I have been dealing with many situations where the clinical judgement of so called “experts” has been flawed and families are being “sold” on a “perceived” and not “real” end of life situation.

What do I mean by that?

I wrote an article about this here and highlighted the difference between a “real” and “perceived” end of life situation

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

This has not been the case in your Dad’s circumstances and I think you and your family should feel relieved that every possibility to maximise the survival chances for your Dad has been looked into in ICU.

The only point of criticism that I would have is that they haven’t done the tracheostomy, because your Dad could have come off most of the sedation and that would have eased some of the burden on his body. It wouldn’t have been a guarantee for a cure but I believe it would have increased his chances.

I really do believe that your Dad in the end was in a “real” and not “perceived” end of life situation. That doesn’t mean that they have done all the right things from the start, maybe they could have referred/transferred him on to ECMO earlier during his hospital/ICU stay, however whichever circumstances/events have put your Dad in this unfortunate situation, in the end they were unable to save his life.

I am working with and have worked with many clients where their family members are in “perceived” end of life situations and that is usually a much better starting point to get to the outcomes that families want.

Related article/video:

• Is A Meaningful Recovery Possible When Your Critically Ill Loved One Is On The Brink Of Dying In Intensive Care?

It’s very unfortunate that the Intensive Care team hasn’t really prepared you mentally for this situation and it’s again a shame that they haven’t looked at the option of a tracheostomy earlier in the process and it’s a shame that they haven’t put the option of a lung transplant on the table, therefore they haven’t been open and transparent with you.

I hope this all makes sense and again I would be very happy to debrief with you and your family if you feel like there is benefit in it.

Given that I have been dealing with many- probably hundreds- of end of life situations in Intensive Care as well as in my counselling and consulting service here at INTENSIVECAREHOTLIONE.COM I might be able to help you or your siblings to come to terms with the loss of your Dad.

I could also review medical records in ICU to get more clarity about what they have and what they haven’t done. As you’re aware you have the right to access the medical records for your Dad if you want to.