My Dad is in ICU on a Ventilator with Tracheostomy. Is it True that My Dad Can Go Home with Services like Intensive Care at Home?

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 was

How Can We Get our Dad Off the Ventilator and Out of ICU to Prevent Another Infection?

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

In this episode of “YOUR QUESTIONS ANSWERED” I want to answer a question from one of my clients Anna as part of my 1:1 consulting and advocacy service! Anna’s dad is in ICU on a ventilator with tracheostomy and she is asking if her dad can really go home with services like the intensive care at home.

My Dad is in ICU on a Ventilator with Tracheostomy. Is it True that My Dad Can Go Home with Services like Intensive Care at Home?

Hi Anna,

Very nice to hear from you!

Even though your Dad’s by no way out of the woods, his neurology has definitely improved!

Keep him engaged and get him watching TV etc.

Because there clearly is this pattern with risk of infection and antibiotics ongoing, the only way to break out of the vicious cycle is to get him off the ventilator and out of ICU!

Kind regards,

Patrik

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Hi Patrik,

Many thanks for your email. A big help as always.

I have just done a purchase again on PayPal.

The consultant on yesterday called my stepmom in for a meeting. She said dad has a staphylococcal infection, which they are treating with antibiotics. (I will find out what antibiotic when I go in tomorrow; I’m driving down there tonight)

The consultant feels he is very weak. They did a CT scan which showed his lungs are no worse, no better. He is coughing up a lot of yucky stuff which they are suctioning off. Apparently they tried him off the ventilator yesterday but he struggled.

Patrik: It’s probably best if you send me another picture of the ventilator and I can comment on it.

The consultant says there are a few warning signs on renal function again. I will ask for specifics.

Patrik: Yes please, get the specifics.

The consultant said her view remains unchanged from the beginning – that he is unlikely to survive.

Patrik: On what grounds? Is this the consultant’s perception or is based on clinical evidence? Just because your Dad is weak doesn’t make him unlikely to survive. The odds might still be against him, however surviving 7 cardiac arrests speak loudly. Yes, a prolonged critical illness comes with immense rehabilitation challenges, no doubt, but your Dad is now GCS 15 intermittently, he can have some time off the ventilator from what I understand. Even if he was to survive with being ventilator dependent, he may still survive. The question then boils down to is this acceptable for him and for you as a family? If the answer is yes, then the ICU doctors ought to do everything within their power to honor those wishes. In the meantime the goal should definitely be to get your Dad off the ventilator and also to get him mobile again! Maybe you need to send the interview with Charlie Atkinson to the doctors to listen to it?

INTERVIEW WITH CHARLIE ATKINSON WHO WAS A PATIENT IN ICU & LTAC FOR MORE THAN 12 MONTHS AND SURVIVED AGAINST THE ODDS! LISTEN TO CHARLIE’S INSPIRATIONAL STORY!

Also, whilst not available in the UK- at least not as far as I’m aware- going home on a ventilator with tracheostomy is possible with services like INTENSIVE CARE AT HOME. The ICU team is trying to “sell” you a “one size fits all option” which is basically end of life in ICU, without thinking outside of the box and without honoring your and your Dad’s wishes.

A negative outlook isn’t going to help your Dad! He needs to be surrounded by positive people with a “can-do” attitude!

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She also said she is concerned about his neurology. Said she asked him to poke his tongue out – which he did- (I’ve never seen dad do that before so one could argue that is progress!) but then asked him again a few minutes later and he didn’t.

Patrik: As per comments before GCS 15 at times and GCS 11 when on ventilator! Both are maximum scores without and with ventilation.

I asked my stepmom did you refer to as a point of reference our meeting a week ago with the consultant neurologist and ICU consultant, in which the tone was very different? She said no she didn’t think to. My stepmom said she worries that Dad can’t focus his eyes and asked the consultant about that; the doctor said she notices the same and that to her it infers brain damage. I said to my stepmom aren’t they going to investigate it? Or refer to the neurologist? What if Dad has damage to his eyes? She said nothing was suggested.

Patrik: Where is the neurologist? I thought he or she was making an assessment of your Dad? They need to be getting back into the picture to look at rehabilitation as well as getting that critical neurologist point of view! From what I understood in our last phone call, the neurologist was way more positive compared to the ICU. Get people on to the treating team to support your Dad!

I think my stepmom finds it very difficult to question the consultants – many of whom she likes very much – and trusts them. She openly admits she doesn’t think to ask the questions my sister and I would, and unfortunately it would appear it shapes Dad’s care when my sister and I are not there constantly asking questions of them!

Patrik: One of the psychological traps in Intensive Care is people feeling gratitude for the care that has been provided up to this point. It’s good to feel grateful for that. It’s not good to misunderstand the gratitude you are feeling for guilt, that makes you agree with decisions the doctors want to make to end the life for your Dad. I have been in so many family meetings in Intensive Care over the years where families are being told that it’s “in the best interest” for their loved one to have treatment withdrawn and die. ICU teams use the gratitude that families often feel towards the care being provided to this point, to get families to agree to the death sentence for their loved ones. I have literally seen families breaking down in those situation without understanding the psychology at play. Understanding yourself and the emotions you are feeling in those situations is going to be critical to get the desired outcomes! Don’t let your emotions-including gratitude and guilt you may be feeling- let you agree with anything you may regret later!

I worry we have taken a big step back in terms of overall clinical outlook on his neurology and prognosis. A week ago the tone was cautiously optimistic and positive.

Patrik: Was that because neurology was more optimistic??? It doesn’t sound to me like your Dad has gone backwards from what I understand. He might be stagnating currently but ICU is two steps forward and one step back and the ICU is not prepared to give your dad the time he needs to get off the ventilator and leave ICU alive!

There is such disparity across the consultants Re: his neurology and prognosis and that really concerns me. Does this happen often Patrik? How do we navigate this?

Patrik: Yes, this disparity happens very often! I think one way to navigate this is to change the designated consultant. If he wanted to withdraw treatment for your Dad, chances are he will do so again.
Many doctors will have different views on this situation, but there is also a chance that some doctors have not faced their own mortality! I always believe that people need to have faced their own mortality before they can operate with compassion, dignity and empathy in ICU! I believe there are too many doctors and nurses in ICU who still haven’t faced their own mortality and therefore they can’t handle these challenging situations with compassion and empathy!

They also asked my Stepmom to choose a dedicated consultant for Dad – I’m not really sure why? And I don’t really know what that means for Dad’s care.

Patrik: Is this somebody who is driving to “withdraw treatment” for your Dad??? It sounds like it!

She chose Jonathan, who is very nice, kind and caring, and who we saw a lot of in the beginning. He is a consultant anesthetist in ICU and he ventilated Dad at the start.

The downside is that he was the consultant who wanted to withdraw treatment after Dad didn’t wake up properly! He was of the view that Dad could not recover. My stepmom thought she was doing the right thing, of course because he has been kind to us. Unfortunately, she didn’t think to say she would consult with us, so a decision was made.

Patrik: He might have been kind and you and your stepmom might have felt the gratitude that I was referring to earlier. This gratitude is dangerous if you channel it incorrectly as I explained before. Don’t let that gratitude make you feel guilty. There is a real danger in that and the ICU team knows that. You should be thankful, no doubt, but the ICU doctors and nurses have a duty of care for your Dad and for you as a family! Keep reminding them of that!

I’m really concerned we now have the wrong consultant acting on Dad’s behalf.

Patrik: Then get a different one. Keep asking for what you want and never give up!

My preference would be Ruvel – the ICU consultant who attended the meeting with the consultant neurologist Jonah last week. He has seen Dad from the beginning too. He agreed with Jonah’s neurological assessment but also said the right things in terms of Dad’s care. In other words, he hadn’t written Dad off! It’s patently clear many of the others have.

Patrik: Surround yourself with people who are aligned with your and your Dad’s wishes. Get the negative people off the bus! Keep asking for what you want and be persistent! Stay positive no matter what! Even if the outcome is going to be negative, staying positive will still help you!

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Now my concern is that we are potentially in an impasse and I’d really welcome your advice!

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Best wishes,

Anna

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