HOW TO STAY STRONG IF YOUR LOVED ONE'S IN ICU&YOUR QUESTIONS ANSWERED EPISODE

Published: Mon, 12/08/14

Please take my apologies for sending out my last weekly update a couple of hours ago with the wrong headline.

Same email, just with this week's headline and not with last week's headline.

Wishing you and your Families all the very best!

Patrik Hutzel

Hi, it's Patrik Hutzel from INTENSIVECAREHOTLINE.COM , where we INSTANTLY improve the lives of Families of critically ill Patients in Intensive Care, so that you can 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!

In last week’s BLOG you’ve discovered

“The 5 ways how resilient Families in Intensive Care stand back up when life knocks them down”

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

In this week’s BLOG I want to share with you

“HOW TO STAY STRONG WHILST YOUR

LOVED ONE IS CRITICALLY ILL IN

INTENSIVE CARE!”

Staying strong is one of those golden nuggets, it’s a skill, it’s a quality that Families of critically ill Patients in Intensive Care desperately need when one of their loved ones has been admitted to Intensive Care!

And staying strong is what many Families of critically ill Patients in Intensive Care are doggedly determined to be, to only find that if their critically ill loved one is either

very unstable and in a very critical condition
in a life threatening situation
in Intensive Care for long-term treatments and long-term stays
having a severe(traumatic) head or brain injury
threatened with an “NFR”(Not for resuscitation) or “DNR”(Do not resuscitate) order
In a situation where the Intensive Care team suggests a “withdrawal of treatment” or a “limitation of treatment” as being “in the best interest” of your critically ill loved one
approaching their end of life in Intensive Care

that STAYING STRONG during this “ONCE IN A LIFETIME” situation is easier said than done!

And the truth and the fact of the matter is that the 99% of Families of critically ill Patients in Intensive Care who have no PEACE OF MIND, who have no power, no control and no influence, consciously or unconsciously decide to give in to the “perceived power” and the “perceived authority” of the Intensive Care team and therefore also consciously or unconsciously decide to stay weak!

Therefore more often than not STAYING STRONG has given way to the agenda of the Intensive Care team and most Families of critically ill Patients in Intensive Care are only passive bystanders and they have things happen to them rather being a master of their own destiny!

STAYING STRONG when having a loved one critically ill in Intensive Care is not easy, because you and your family are facing your worst nightmares!

STAYING STRONG when your loved one is critically ill in Intensive Care is something you can achieve, however you need to start going against the grain, you probably need to do some counterintuitive moves and you need to do what the 99% of Families of critically ill Patients in Intensive Care who have no PEACE OF MIND, no power, no control and no influence are not doing!

The Intensive Care team knows what to say, when to say it and how to say it for their maximum gain!

STAYING STRONG when your loved one is critically ill in Intensive Care and when the Intensive Care team has laid down the train tracks and knows what to say, when to say and how to say it, even if or I shall say especially if your loved one is

very unstable and in a very critical condition
in a life threatening situation
in Intensive Care for long-term treatments and long-term stays
having a severe(traumatic) head or brain injury
THREATENED with an “NFR”(Not for resuscitation) or “DNR”(Do not resuscitate) order
In a situation where the Intensive Care team suggests a “withdrawal of treatment” or a “limitation of treatment” as being “IN THE BEST INTEREST” of your critically ill loved one
approaching their end of life in Intensive Care

can be a daunting challenge, however you can STAY STRONG if you are laying down your own train tracks, if you are not intimidated by the “perceived power” and by the “perceived authority” of the Intensive Care team!

STAYING STRONG in the face of adversity

STAYING STRONG in the face of adversity, STAYING STRONG when your body language screams of your insecurities, your fears, your frustrations, your pain and your vulnerability and STAYING STRONG when life has knocked you down is a skill that you can quickly develop!

STAYING STRONG when the tone of your voice is closer to crying and closer to a nervous breakdown than having composure and strength is a skill that is not optional and it’s a skill that you can develop and master!

Now, I can tell you that after more than 15 years Intensive Care nursing in three different countries and after I have worked with literally THOUSANDS of critically ill Patients and their Families, STAYING STRONG starts with having the awareness that 99% of families in Intensive Care have no PEACE OF MIND, no control, no power and no influence!

STAYING STRONG starts with you having the guts, the believe, the courage and the faith that you can be a master of your own destiny!

STAYING STRONG starts with you looking around you and look at what everybody else is doing and doing the complete opposite.(Remember 99% of Families of critically ill Patients in Intensive Care have no PEACE OF MIND, no control, no power and no influence and by no means do you want to copy or model what they are doing!)

STAYING STRONG starts with you having an awareness that your body language sucks and that the minute you enter the Intensive Care Unit everybody can see that your back is hunched, that your shoulders are pulled inwards rather than outwards, that you avoid strong eye contact, that your head is down and that your handshake is weak!

Your job is to be a master of your own destiny and therefore you need to take FULL RESPONSIBILITY for what is happening from now on!

STAYING STRONG starts with you taking full responsibility for what is happening from now on!

STAYING STRONG starts with you questioning the Intensive Care team and to look “BEHIND THE SCENES” in Intensive Care

STAYING STRONG starts with you developing the awareness that the Intensive Care team’s agenda is mainly driven by their financial interests($$$), their budget targets($$$), their bed management pressures, the politics, the dynamics, the competing interests, the power play, the intrigue and the psychology at play in an Intensive Care Unit.

STAYING STRONG also includes developing the awareness that the Intensive Care team has medical research interests, and that medical research is performed on real critically ill Patients in Intensive Care, often without you and your critically ill loved one knowing about it, let alone you or your critically ill loved one having given written or verbal consent to it!

STAYING STRONG means that you need to know that the positioning of your critically ill loved one’s prognosis and diagnosis by the Intensive Care team often goes way beyond your critically ill loved one’s prognosis and diagnosis!

STAYING STRONG means that you and your family need to know and understand that Intensive Care is a multi- Billion Dollar $$$ per year industry in this day and age and the sheer amount of dollars(Pounds) that is exchanging hands opens the doors for all sorts of ethical and moral issues and dilemmas!

Throwing out all of your preconceived ideas about Intensive Care is critical!

STAYING STRONG when your loved one is critically ill in Intensive Care means that you need to throw away all of your preconceived ideas about Intensive Care!

STAYING STRONG when your loved one is critically ill in Intensive Care means that you and your family need to make up your own mind, irrespective of what the Intensive Care team is telling you!

STAYING STRONG means that you and your family should not buy into the “doom and gloom” picture that the Intensive Care team may have painted!

STAYING STRONG means that you need to have your own agenda, your own goals and outcomes that you want to achieve for your critically ill loved one, irrespective of what the Intensive Care team is telling you!

STAYING STRONG means that whenever you and your Family are asked to have a “formal” Family meeting with the Intensive Care team that you have strong positioning, mental clarity and that you pursue your own agenda, rather than buy into the “doom and gloom” of the Intensive Care team!

STAYING STRONG means that whatever the Intensive Care team is telling you when your critically ill loved one is either

very unstable and in a very critical condition
in a life threatening situation
in Intensive Care for long-term treatments and long-term stays
having a severe(traumatic) head or brain injury
threatened with an “NFR”(Not for resuscitation) or “DNR”(Do not resuscitate) order
In a situation where the Intensive Care team suggests a “withdrawal of treatment” or a “limitation of treatment” as being “in the best interest” of your critically ill loved one
approaching their end of life in Intensive Care

that you leave no stone unturned and that you have the strength, the determination, the power, the control and the influence that will ultimately lead you to have PEACE OF MIND!

Also, check out our "YOUR QUESTIONS ANSWERED" section

where I answer all of YOUR questions

http://intensivecarehotline.com/category/questions/

This is another episode of “YOUR QUESTIONS ANSWERED” and in last week’s episode I answered another question from one of our readers and the question last week was PART 4 of

“My Mother is in ICU after her heart stopped! We believe that the Intensive Care team is keeping her sedated & paralysed for longer than necessary, what should we do?”(PART 4)

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

Trudie who has asked this question has also been featured on our PODCAST, where she shares her story and her challenges with a difficult Intensive Care team, while her mother was in Intensive Care! You can check out the podcast here.

In this week’s episode of “YOUR QUESTIONS ANSWERED” I want to answer another question from our readers and in this week Peter from the United States asks

My friend is in ICU ventilated with Leukaemia!

The doctors have made her “DNR”(Do not resuscitate)!

I disagree, what are the best options?

Hello Patrik

thanks for your advocacy and your information!

My dear dear friend has fought acute lymphoblastic leukemia for 4 years now and was just lately in a clinical trial at a hospital Los Angeles.

About 10 days or so ago she developed infections(her WBC has been extremely low for a long time now) and after several days of antibiotics and not getting better she was transferred to ICU.

After a couple of days there I was called and told she was at risk of dying if she was not intubated, put on a ventilator and given a bronchoscopy to see what was going on in her lungs.

I of course consented to this. Now, it's 4 days on the ventilator and she is in chronic a-fib(she's had it for years but not chronically), in an induced coma, and the c-dif infection is not getting better, while other infections may be improving.

The drs met with my friend's brother( I live a few hrs away and will meet with drs tomorrow) and they decided to make her a DNR(Do bot resuscitate) if her heart should stop.

I am ambivalent about whether this is what she would want given that she has fought through so much with me at her side these years..I do know from her that she does not want to be kept alive indefinitely on a vent if there's little or no chance of a decent life.

One of my thoughts is if we could reduce the pain and other sedating meds somewhat might she become alert enough to tell us what she wants..? The past couple of days she has opened her eyes more but is not responsive to communication as far as we can tell.

Below is her brother Greg's synopsis of the meeting yesterday. I deeply appreciate your thoughts and clarity here because, as you know Patrick, time is of the essence.

With deepest thanks,

Peter

San Diego,Ca

"Here's what the docs said in a nutshell. Chris’ condition is unchanged except for her a-fib, which is controlled, and her abdomen, which feels firmer. She still has a rapid and irregular heartbeat but people can live years with a-fib. Her firmer abdomen means she still has c diff and her colon is inflamed and filling with air, which could lead to a lethal condition called mega colon. The blood culture from Oct. 5 has no growth after 3 days, which may be a sign the antibiotics are working or at least holding the bacteria at bay. But the c diff is still there. What Chris needs is for her WBC to fight the infection and she has virtually none. Her bone marrow isn't producing it. The docs don't think she will survive if taken off the vent. We will discuss Chris’ condition again on Friday. Neither doctor liked the idea of taking Chris off the meds to ask her what she wanted. They said she would be in pain and her only choice would be to stay on the vent indefinitely, something she has already said she didn't want. I urge you to talk to Dr. Megashe in the ICU, either in person or by phone, to get your questions answered."

Hi Peter,

Thank you for your question and thank you for your kind words, regarding our website.

I am very sorry to hear what you and your friend are currently going through.

Leukaemia in Intensive Care is a big challenge for some of the reasons that you have outlined already and many Patients with Leukeamia don’t survive their stay in Intensive Care.

However being asked to issue or sign a DNR(Do not resuscitate) or NFR(Not for resuscitation) is an entirely different matter altogether.

Especially in light of the fact that you and your friend’s brother feel like she wouldn’t want the DNR- or at least it’s unclear to me whether the Doctors “made her DNR”, or your friend’s brother consented to it?- in any case it worries me that there seems to be a lack of transparency around the DNR from your perspective.

DNR’s(Do not resuscitate) or NFR’s(Not for resuscitation) orders have their time and their place after open disclosure, after transparency and only after mutual agreement between all parties has been achieved.

It sounds to me like that has not been the case and the DNR has been implied. You should question that approach and you mustn’t be intimidated by the “perceived power” and the “perceived authority” of the Intensive Care team.

If you think that the DNR has just been issued by the Intensive Care team without consent from you and/or from your friend’s brother you should object!

Intensive Care teams can be extremely adept and shrewd to “sell” a “withdrawal of treatment” or a “limitation of life support” as being in "THE BEST INTEREST” of a critically ill Patient. Often this approach reflects what’s happening “BEHIND THE SCENES” in Intensive Care and is often a result of the financial interests, the bed management pressures, the medical research interests and also often the general nature of the Intensive Care team that “we know what’s best” without an open and transparent discussion taking place.

End of life situations or even perceived end of life situations are very special in nature and all parties involved should not rush things.

A careful evaluation of the situation is necessary.

I can’t predict the outcome of your friend’s stay in Intensive Care, however you should definitely do the right thing by your friend and give her the chance to come out of the induced coma and let her assess her situation.

The issue and challenge could well be that your friend may not “wake up” from the induced coma and will never be able to make her own decisions.

But I think you’ve got to try anyway.

You also should ask about the clinical trial. Why was your friend on a trial? Could that trial be related to the Intensive Care team suggesting the DNR?

Never underestimate the medical research interests in an Intensive Care Unit.

It sounds to me like you are realistic and Patients in Intensive Care with Leukaemia often approach their end of life.

However, why do a bronchoscopy, start antibiotics, screen your friend in all corners and then suggest a DNR?

And once again, this is not about the Intensive Care team, this is about what you and your friend want and how you and your friend can have PEACE OF MIND, control, power and influence.

Low WBC is a big issue and is often not a good starting point and makes your friend extremely vulnerable. Single organ failure(in your friend’s case the lungs) can often be enough to tip them over the edge.

The A-fib is not too much of a concern, but again can be enough to add on to the dilemma your friend is in.

You should also check out some articles here regarding DNR/NFR orders and/or "WITHDRAWAL OF TREATMENT", as well as about INDUCED COMA

Related articles

My 80 year old father is in Intensive Care with Myeloma! The Intensive Care team HAS ASKED ME TO SIGN A “DNR” AND I REFUSED! What are MY OPTIONS?

The 5 questions you need to ask when the Intensive Care team is talking about “Futility of treatment”, “Withdrawal of life support” or about “Withdrawal of treatment”!

How LONG does it take to WAKE UP after an induced coma?

What is an induced coma and why is my critically ill loved one in an induced coma?

I hope that helps Peter.

Please let me know if you have any other question.

I can also be available for a 30 min FREE Skype consultation.

Thank you& Kind Regards

Patrik Hutzel

If you want your questions answered just hit reply to this email or email me at support@intensivecarehotline.com and I'll answer your questions!

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Or if you want to be featured on our podcast with your story, just email me at support@intensivecarehotline.com

FREE Video Mini- Course out now!

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long-term stays in Intensive Care
end- of- life situations
Family meetings with the Intensive Care team
withdrawal of treatment situations and/or perceived medical futility
what to do if your critically ill loved one is THREATENED with an "NFR"(Not for resuscitation) or "DNR"(Do not resuscitate) order
severe head and brain injuries

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Your Friend

Patrik Hutzel

Critical Care Nurse

Founder& Editor