My 57 year old Dad has been in Intensive Care with Cardiomyopathy and Pneumonia for 5 weeks! He’s still in an induced coma and still doesn’t have a tracheostomy, HELP! (PART 8)

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 from our readers and the question last week was

My 57 year old Dad has been in Intensive Care with Cardiomyopathy and Pneumonia for 5 weeks! He’s still in an induced coma and still doesn’t have a tracheostomy, HELP! (PART 7)

You can check out the answer to last week’s question by clicking on the link here.

In this week’s episode of “YOUR QUESTIONS ANSWERED“, I want to answer another question from one of our readers and the question this week is

My 57 year old Dad has been in Intensive Care with Cardiomyopathy and Pneumonia for 5 weeks! He’s still in an induced coma and still doesn’t have a tracheostomy, HELP! (PART 8)

This series of questions from Garry are excerpts from numerous 1:1 phone and email counselling and consulting sessions with me over a two month period.

Previous questions from Garry you can access here Part 1, Part 2, Part 3, Part 4, Part 5, Part 6 and PART 7.

Garry and his family went through many challenges while his Dad was in Intensive Care and I felt very privileged helping Garry through this difficult time in his and his Dad’s life!

Garry writes

Hi Patrik,

sorry for the short notice but are you free now today as soon as possible ?

I just got a phone call from the ICU and things took a really bad turn this morning.

His lungs are really bad again he’s heavily sedated once more, his heart is weak and his blood pressure is down needing high doses of inotropes again.

I spoke with the consultant just now and they said while they will not withdraw care they are no longer going to give new medication. I am going to go see him later today.

What should I do now? – please help 🙁

Garry

Here is my response, which is basically a summary of the phone call that took place after Garry’s email.

Hi Garry,

thanks for your time again today.

Here’s a quick summary of what we’ve discussed.

One of two things I believe might have happened

1) The Cardiomyopathy which seemed to have improved over the last few days with decreased inotropic support might have come back. It would also show that it’s probably a chronic condition that needed an appropriate long-term treatment approach, I.e. ECMO, VAD and/or heart transplant etc…

Because of the ICU consultants not taking appropriate steps to get a Cardiologist involved to refer your Dad to a more specialized ICU where ECMO, VAD and/or heart transplant would have been available, they have now little room left in order to treat your Dad appropriately.

If the Cardiomyopathy has come back, your Dad has probably gone back into Pulmonary oedema(Water in the lungs), they couldn’t ventilate him because of that and they had to re-sedate him back into an induced coma.

Related article/video:

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

It also depends on how badly the Pneumonia was your Dad presented with initially and if they were able to cure it completely or whether it has come back.

In any case, a combination of Pulmonary oedema and Pneumonia tends to be a recipe for having difficulties in ventilating critically ill Patients in Intensive Care, hence the need for sedation.

2) Your Dad might have become septic (Sepsis = infection) and that could be because he developed a ventilator associated Pneumonia or he has acquired an infection from his lines, I.e. Central line or Arterial line or from the Tracheostomy

Treatment options for 1) would be Inotropes, as previously discussed and if that doesn’t work and escalation to ECMO or LVAD or even heart transplant. Once again Garry, a 3-Bed ICU is too small and they just don’t simply have the volume, the experience, the “know-how”, the equipment and the staffing resources necessary to deal with such a complex situation appropriately and in your Dad’s best interest.

Unfortunately they have let you and your Dad down very early on and now it looks like it’s too late to get your Dad in a situation where he could benefit from advanced treatment options because his long stay in ICU without appropriate treatment options being available has taken its toll on him.

Treatment options for 2) would be Intravenous Antibiotics and regular line changes. Central line and Arterial line should be changed every 7 days. The same applies for his Catheter. His urinary catheter should be changed every 4 weeks and also is a risk for infection.

It’s good to hear that your Dad was in good spirits until yesterday, this is great to hear and something to build on. It’s also something you should use if the Consultants if they bring up withdrawal of treatment. Never forget that your Dad is only 57 and wants to live!

Here is a link to an article/video that you hopefully don’t need but it’s here anyway if you need it:

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!

On the other hand Garry, now that they had to re-sedate him once again, especially since he was conscious in the last few days and in what you describe as good spirits, it’s a shame to see him going back wards.

Sedation and induced coma should always be minimized as much as possible as you can imagine.

And again, given that your Dad didn’t have a tracheostomy for nearly 5 weeks and therefore was left in an induced coma for way too long speaks volumes about their duty of care!

Your Dad’s chances of survival would have been maximized if he had come out of the induced coma after a couple of weeks if they had done a timely tracheostomy.

Also Garry, the consultant is now saying that they are not going to withdraw care.

Now, from my perspective and from my experience nobody should ever withdraw care, ever!

They might “withdraw treatment” but only if you agree to that and only after they have been transparently disclosing all treatment options to you, which is something they still haven’t done after two months of your Dad being in Intensive Care!

Even if you decide that “withdrawing treatment” might eventually be in your Dad’s “best interest”, you still want him to be looked after and cared for.

There is a huge difference between “withdrawing treatment” and “withdrawing care”. Even when treatment is being withdrawn nobody should ever stop caring for people. If that’s what they suggest then they are failing you and your Dad once again on another level!

This whole situation turns out be an absolute nightmare and disaster for your Dad and for you. They don’t know what they are doing, they are not being open and transparent and by now I believe that your Dad may not survive this ordeal in ICU because too much time has passed with the ICU team making all the wrong decisions and not asking for outside help!

It’s absolutely shocking what’s happening there and I really hope that they may grasp the significance of this whole dilemma that’s turning into a debacle.

Even if they finally realize that your Dad would greatly benefit from a transfer/referral to another more specialized ICU, another ICU probably wouldn’t take him because I think it’s now almost too late given the severity of your Dad’s Cardiomyopathy and given the prolonged stay in Intensive Care without them being proactive.

It’s very sad and disappointing to see what is happening here Garry.

Get back to me with a couple of times to set up a phone meeting with the consultant and we can schedule it so that I can talk to him.

Any questions please let me know.

Stay strong and stay positive!

Wishing you and your Dad all the very best.

Speak soon,

Patrik

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