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 Dad’s been in ICU for 2 months with Tracheostomy and now he’s got a stomach bleed and he’s on 100% Oxygen. Can he survive?

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 question from one of our readers and the question this week is

My father is in ICU with ARDS and the Intensive Care team is withholding information! Help!

This question from Umair formed part of an email counselling/consulting session with me.

Umair shares his and his father's situation in Intensive Care as follows

Hi Patrik,

thanks for all your updates and newsletters, they are really helpful! I have a quick question.

My father is in Brampton hospital (Ontario) in ICU because of ARDS(lung failure), I was with him at the bedside for two weeks and now because of my other professional and family commitments I had to leave him. My sister is still in Brampton (none of us live there, just visiting because of my dad) and my sister visits my Dad every day.

I have been calling daily and few nurses will give out the details on the phone regarding my father's condition but lately they are not giving me any updates and one nurse has annoyed and escalated the matter to the "team" so the social worker along with the doctor and manager decided that they are not going to update me on the phone anymore and they will only update my sister daily who is physically present there.

My sister doesn't have the same information as I do and therefore doesn't ask the same questions as I have. Plus she often misinterprets the meaning and big words before she can pass on the information/update to me.

Do I have any rights that I can challenge this? I should be able to speak to the nurse at least once a day for quick updates. What are my rights? Help!

Umair

Dear Umair,

thank you for your question and thank you for using my email counselling and consulting service!

And first of all, I am very sorry to hear that your father is in Intensive Care with ARDS!

Also, give yourself a "pad on your back" for standing your ground and for not putting up with the game the Intensive Care team is playing, well done!

You should definitely challenge that the "team" is not giving you any information about your father's condition!

Unless there are things happening that you are not sharing with me, you have absolutely every right to be updated about your father's condition!

Unless your father has specifically mentioned on admission to hospital or Intensive Care that he doesn't want the Hospital and/or ICU to give you updates you should move heaven and earth to exercise your rights!

It doesn't surprise me that the "team" is trying to minimise the flow of information to relatives. There is often a lot at stake for the "team".

If- for whatever reason- you are perceived as being "difficult" by the Intensive Care team, because you are asking too many question or god forbid, too many difficult questions, Intensive Care teams often try to exercise and impose their "perceived power" and their "perceived authority" on to families of critically ill Patients, by either wrongly and also illegally withholding information.

It could well be that you are falling into this category, but I don't know. The fact of the matter is that I have seen over and over again, that when families are being perceived as "difficult and demanding", that the Intensive Care team is trying to "shoot you down" by withholding information.

Again, for Intensive Care teams there's usually a lot at stake as well, whether it be the financial impact the treatment of your father has on their budget and/or the anticipated length of stay your father's admission has on their resource and bed management plans!

Especially with ARDS(lung failure) your father's condition might deteriorate rapidly and therefore depending on how skilled and experienced the Intensive Care team is in this ICU the may or may not make the right decisions!

When common treatment is proving to be ineffective in ARDS(lung failure), escalation of treatment would be the right thing to do, however many Intensive Care Units may not have the right equipment and/or experience to escalate treatment for ARDS(lung failure).

Therefore you getting regular and transparent updates is critical.

It's therefore that you've got to be prepared to stand up for yourself!

Related article/video:

How to play a “HIGH STAKES GAME” that only the Intensive Care team knows HOW TO WIN!

 To give you some examples of what can happen to critically ill Patients in Intensive Care with ARDS(lung failure) I have put in some links to counselling/ consulting that I have done with previous Clients who had their loved ones in Intensive Care for ARDS(lung failure).

• My Mum has been in ICU for three weeks now and she is on ECMO for ARDS! Will she SURVIVE?(PART1- 6)

• MY AUNTY IS IN INTENSIVE CARE ON ECMO FOR ARDS, WE’RE VERY WORRIED SHE MAY DIE! HELP! (PART1- 11)

Here are some action steps for you that should solve your problem

1. Ask for the unit policy about having access to information at any given time. The ICU must have a policy about this and they need to give you access to this policy so that you can find out whether they are following the right procedure

2. If you're having issues of getting this information from the unit directly because you are living in another state, you need to contact Hospital administration and tell them about your dilemma! Do not take "no" for an answer. This is where most families in Intensive Care fall short, because they nod off everything they are being told and they do take “no” for an answer. Big mistake!

3. It might also help to get a social worker involved  to clarify the situation and to help you. Social workers tend to be really good at supporting families as well!

4. Be "difficult and demanding" and demand your rights!

Related article/video:

THE 5 REASONS WHY YOU NEED TO BE DIFFICULT AND DEMANDING WHEN YOUR LOVED ONE IS CRITICALLY ILL IN INTENSIVE CARE!

Don't be like 99% of families of critically ill Patients in Intensive Care who don’t make informed decisions, have no PEACE OF MIND, no control, no power and no influence! Be different and demand the Intensive Care team to step up to do the right thing!

You should also be checking out the Patient advocacy groups in Canada to further look into what rights you have

http://patientscanada.ca/

Last but not least, keep informing yourself and keep doing your own research, which you have been doing anyway!

Again, it doesn't surprise me the way the Intensive Care team is behaving and it's often their arrogance and also ignorance to keep families of critically ill Patients at "arm's length"!

Be different, don't be intimidated by the Intensive Care team, (most families in ICU are) and make very clear that you won't put up with the way you are dealt with and ask them to follow the right policies and procedures, as well as maintain high ethical and moral standards!

Given that your Father has ARDS(lung failure), is critically ill and is most likely in a life threatening situation, the Intensive Care team can’t just withhold information. You have a right to know what’s happening and going on. ARDS/lung failure is often life threatening and requires sophisticated medical management and treatment! Therefore information and regular updates are crucial!

I hope that helps Umair, please let me know if you run into challenges or difficulties or if you have any other questions!

If you have anymore questions please let me know and we can get on the phone or you can send me another email. 

Your friend

Patrik