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 uncle is in Multi-organ failure after three weeks in ICU! He's ventilated with a trachea, on Haemodialysis and he's not waking up! Everything seems to go wrong, what do we need to do?
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 84 year old Dad has been in ICU for three months! He's ventilated with a tracheostomy, the doctors want to let him die and turn off the ventilator! We want to take him home instead, what are our options? (PART 1)
This series of questions are excerpts from a 1:1 phone/Skype counselling session and a series of email counselling and consulting
Belinda describes her father’s
situation in Intensive Care as follows
Hi Patrik,
my 84 year old father has been in ICU for three months now.
My Dad's got a history of chronic kidney failure and he has been on Dialysis three times a week for the last five years.
He’s also been diagnosed with cancer of the Oesophagus and he’s had a stent implanted for that in the last couple of years and he’s had radiotherapy for the cancer.
Despite the cancer in the Oesophagus he has been able to eat prior to going to hospital and despite the ongoing Dialysis, he’s been able to live
independently prior to his ICU admission and he lived a fairly good quality of life given his ongoing and chronic health issues.
Initially my Dad presented with Pneumonia,
probably due to aspiration as he’s had some episodes of vomiting at home.
With the Pneumonia, he couldn’t breathe and he had to be intubated when he went to the emergency room.
He ended up being really septic and his white cell count and all the infection markers went up. He ended up being really sick with being on Vasopressors(=Inotropes), Haemodialysis and after about three weeks in ICU he ended up having a tracheostomy.
They managed to get him on a tracheostomy collar after about another two weeks and he was improving, but now he’s septic again and the whole downward spiral is repeating itself.
During his ICU stay, they had to stop some of the
medications that he was on for his cancer and now the Doctors are telling me that his cancer in his Oesophagus is coming back.
He’s got a PEG tube and he’s getting feeds through the PEG tube.
It appears that he’s getting weaker and weaker and with the new sepsis coming on, he’s back on the ventilator.
Overall after three months in ICU my Dad’s not improving and we’re not giving up. We’re quite comfortable that my Dad is comfortable and despite him being so sick, we’re certain he’s not in any pain.
Over the last couple of weeks we have been feeling the pressure by the Intensive Care team to agree to a "withdrawal of treatment".
We are very opposed to give up on our Dad and we have discussed with him in the past that should he ever need ICU and he's not suffering
that he would want everything done for him as he wants to live.
We have now reached this point and we don’t want to give up on him.
We strongly feel that the Intensive Care team "wants to get rid of us"” as we probably exceeded our length of stay.
The health insurance has indicated to us that my Dad only has another two weeks of treatment
left, therefore we have come under pressure from all sides.
The doctors have also mentioned that they think my Dad should not be resuscitated if his heart stops and we as a family disagree!
Overall, the situation looks pretty grim but we are determined to not give up and we are determined to get either treatment on our terms in the ICU or to take my Dad home.
We are desperately looking for options and how to stand our ground, what should we be doing and what are our
options?
Many thanks
Belinda
Hi Belinda,
I'm sorry to hear about the difficult situation that you and your Dad are dealing with in ICU.
Thank you for being a Client, I
appreciate your trust and commitment into my services.
It’s great to see that you are taking action though and it’s great to see that you are seeking expert help through my 1:1 phone/Skype
counselling and consulting service!
Just to summarize quickly what we have discussed today and also to determine your next steps.
1) Ask the ICU team for their hospital policy or ICU policy about DNR(Do not resuscitate) or about withholding life sustaining treatment. There is a very high chance that they are in breach of their own hospital policies by not getting your consent for a DNR
(Do not resuscitate)/ NFR (Not for resuscitation) order!
2) Ask to have a look at the medical records of your father. Have a close look what has been documented regarding the DNR (Do not resuscitate) status of your Dad in the medical notes. Get copies of all the notes and you have a right to get access under the "freedom of information" act.
Related:
3) Speak to your case manager from the health insurance. Plead your case! They should absolutely
consider that not giving your Dad the best possible treatment would have big implications for your, your Dad’s and your family's quality of life!
4) Ask whether the Hospital can help you to transfer your Dad home. Maybe they have a "Hospital in the Home" service and they can help you. As you’re aware I also run a specialized in-home service INTENSIVE CARE AT HOME for long-term ventilated adults& children with tracheostomies. This service provides a genuine alternative for a long-term stay in Intensive Care and is a great alternative, however unfortunately the service is not available in your area.
You may also want to listen
to an interview that I’ve done last year with Charlie Atkinson a very nice and very determined 80 year old man who discharged himself home from LTAC on a ventilator with tracheostomy.
Charlie has many gold nuggets to
share in how to make the impossible possible. You can listen to the interview here
5) In any case, do not take "no" for an answer and stand up for what you believe in. So far you have been doing a great job of standing your ground and you haven't given in, so give yourself a pad on the back for being so strong and for being so determined to follow your Dad’s wishes!
6) Always remember, anything in life is negotiable and you have embarked on a challenging but also rewarding journey. You and your family want to have your Dad looked after on your terms and this is a good thing! Just by you standing your ground and asking the right questions you might as well get what you want!
7) If you need an attorney down the road, I am in close contact with specialised lawyers and I can help you
finding the right person
Overall, your Dad’s prognosis might be rather poor in light of the fact that he’s been in ICU for three months now with a tracheostomy.
Given
his chronic kidney failure and his cancer of the Oesophagus, he has ongoing health issues that may well be significant, especially if the oesophageal cancer has come back.
However you and your family have discussed this with your Dad in the past that if he’s not suffering you want everything done for him.
That’s only fair enough and many if not most families don’t have this discussion in the
first place.
It’s only fair that you are following your Dad’s wishes.
This is really all about the Intensive Care team trying to dictate to you and your family what may be "in the best interest" for your father.
This is all about perception and not reality. The Intensive Care team has the perception that it’s “in the best interest” for
your Dad to have treatment withdrawn and life support (I.e. ventilation) removed.
At the end of the day they are worried that your Dad keeps blocking a bed that they could use for somebody that won’t stay as long as your Dad, as a higher turnover of Patients generally is more “ICU friendly” compared to long-term Patients.
Intensive Care teams have to invest a lot of financial,
equipment and emotional resources to look after long-term ventilated Patients with tracheostomies that are not improving in ICU.
Again from my perspective and experience, home care like INTENSIVE CARE AT HOME is the best
option for your Dad if it was available in the area.
Given that INTENSIVE CARE AT HOME is not an option, you may have to seek strength if starting to manage the Intensive Care team so that they don’t manage you.
You have already started to implement and if you keep standing your ground you may be able to give your Dad the time he needs to get through this or you may be able to buy more time
for your Dad.
But even if he won’t get through this, you’d still be able to get a situation that is what your Dad has asked for as long as he’s not suffering.
From my perspective, I very much support any direction families in ICU want to go as long as their loved ones are not unduly suffering.
By now you have picked up on the Intensive
care team’s "hidden agenda" and by now you have realised that one of their fears might also be to still have your Dad in the ICU and the health insurance not wanting to pay.
Recommended:
"THE 10 THINGS YOU DIDN’T KNOW ARE HAPPENING BEHIND THE SCENES IN INTENSIVE CARE THAT HOLD YOU BACK FROM HAVING PEACE OF MIND, CONTROL, POWER AND INFLUENCE, WHILST YOUR LOVED ONE IS CRITICALLY ILL IN INTENSIVE CARE!"
That’s why it’s so important to speak to your case manager from the health insurance ASAP.
My experience with health insurances is
that they generally pay for long-term ICU stays as long as it’s medically necessary, but it depends of course on the terms and conditions of your Dad’s insurance policy.
I will also send you another email shortly with some links to a couple of EBooks that I want to give you as a gift for being a Client. Those Ebooks will help you to look at some of the issues in more detail and find solutions.
