My friend is in ICU ventilated with Leukaemia! The doctors have made her “DNR”! I disagree, what are the best options?

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!

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 and recommended recources here regarding DNR/NFR orders and/or “WITHDRAWAL OF TREATMENT”, as well as about INDUCED COMA

Recommended Resources

CONTROL, POWER, INFLUENCE AND PEACE OF MIND EVEN IN THE MOST CHALLENGING OF CIRCUMSTANCES THAT YOU, YOUR FAMILY AND YOUR CRITICALLY ILL LOVED ONE COULD FACE IN INTENSIVE CARE

THE 5 THINGS YOU NEED TO KNOW IF THE MEDICAL TEAM IN INTENSIVE CARE WANTS TO “LIMIT TREATMENT”, WANTS TO “WITHDRAW TREATMENT” OR “WITHDRAW LIFE SUPPORT” OR WANTS TO ISSUE A “DNR” (DO NOT RESUSCITATE) OR AN “NFR” (NOT FOR RESUSCITATION) ORDER FOR YOUR CRITICALLY ILL LOVED ONE!

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

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This is Patrik Hutzel from INTENSIVECAREHOTLINE.COM and I’ll see you again next week with another update!