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
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 our readers and the question this week is
Thank you for keeping me going! My 64 year old sister has Legionella’s disease and has been in an induced coma for 6 weeks! The doctors wanted to withdraw treatment but we stood firm and now my sister can live! What should we do next?
This success story from Helen has also been part of an email counselling and consulting session with me.
my name is Helen and I’m contacting you from the UK about my sister.
Your website and your updates have really been helping me with the situation we have found ourselves in.
My sister is 64 years old and had been diagnosed fairly recently with COPD.
She had been on holiday to Florida and on her return was ill and was admitted to the ICU. They thought she had Pneumonia.
As her condition got worse she was put into an induced coma – she has now been in an induced coma for over 6 weeks.
After she had been in the induced coma for about 4 days her condition was deteriorating, despite being given a cocktail of antibiotics.
A Doctor friend suggested she should be tested for Legionnaire’s disease. When we asked about this we were told they don’t test for Legionnaires. The family insisted she’d be tested for this disease, which they did and it was found she did indeed have Legionnaire’s disease. They could then start treating her with the correct antibiotics.
However, the disease had really gotten hold of her and after being in an induced coma for only 2 weeks the ICU consultant had a meeting with the family and told us there was no hope for her, she was not going to get better that she had multiple organ failure and even if they continued treatment she only had 24-48 hours left to live and they wanted to stop the treatment and just give her palliative care. To let her die with dignity!
Now, my sister and me and other members of the family had had discussions in the past about ‘giving up’ on us if we were ever in this position (NEVER thinking that we would be, of course) and we both said never give up on us, no matter what. So we knew my sister would not want us to agree to stopping treatment – especially as she had only been treated for the Legionnaire’s disease for just over a week. We felt it was far too soon to stop treatment (we now firmly believe it was a ‘money’ saving suggestion. We were constantly being told she was the sickest patient in the hospital – and so probably the most expensive!!!)
They agreed to continue treating her but told us it might be a clinical decision to stop in the future.
We’ve have highs and low’s (more low’s) over the last 6 weeks, with my sister’s oxygen being at 100% and Nitric Oxide at 19 PPM(I think I’ve got that right?). They couldn’t get fluid off her and at one stage she had 40 litres in her body – she was swollen and bloated. Every time they tried to remove fluids on the haemodialysis machine her blood pressure dropped and her heart rate went up so they would have to give her more fluids – it was a vicious circle.
2 weeks ago I received a phone call at work from the hospital telling me to get to the hospital immediately as she could ‘pass away’ any minute. The whole family got the hospital, my sister’s heart rate had spiked at 218 and they were convinced she wouldn’t survive.
But they don’t know my sister and her will to live – she literally loved life and had so much to look forward to – her son’s wedding and her daughters first baby to name a few.
Again, the consultant had the “talk” – they wanted to stop treatment and let her go.
The family, again, said ‘No, carry on with treatment’.
A week ago it was confirmed that the Legionnaire’s infection was cleared and they could stop the antibiotics and since then they have managed to get most of the excess fluids from her body. She is starting to look more like herself. They say there are bowel sounds and she has passed a small amount of urine.
Today they have performed a tracheostomy (she previously had the tube in her mouth), she is on a broad spectrum of antibiotics and they have taken samples from her lungs to culture. They are going to stop the sedation.
Now, I know there’s still a long way to go – especially after being in the induced coma for over 6 weeks- but if the doctors had had their way she would have been dead either 4 weeks ago or 2 weeks ago!!!!
All your blogs have helped me through this awful time and I continue to read them and look for info in them at each stage.
Can you tell me what I can expect at this stage, please?
Thank you SO much,
thank you very much for your detailed email and for your kind words.
This is really a success story because it just confirms what I always say that even if you just use the free advice readily available on the INTENSIVECAREHOTLINE.COM website and you apply it you get the results that you’re after!
Congratulations for standing your ground and for getting the results that you wanted for your sister!
It’s nothing new to me what you and your family have experienced and it doesn’t surprise me at all that the Intensive Care Consultants had the “talk” with you and your family to let your sister “pass away with dignity…”
Instead you should give yourself a pad on the back for trying to let your sister live with dignity!
When the ICU consultant said that your sister should “pass away with dignity” you interpreted the information correctly, by seeing it as a money and resources saving exercise for the hospital and the ICU.
That’s exactly what often happens across the board in Intensive Care, doctors trying to play God and making decisions who they want to live and who they don’t want to live!
You and your family have chosen wisely by doing what 99% of the families in Intensive Care are afraid of doing when they have a loved one critically ill in Intensive Care and are in a similar situation! You have become “difficult and demanding” and you have recognised that there is a huge difference between a “real” and a “perceived” end of life situation!
- THE 5 REASONS WHY YOU NEED TO BE DIFFICULT AND DEMANDING WHEN YOUR LOVED ONE IS CRITICALLY ILL IN INTENSIVE CARE!
- The difference between “real” and “perceived” end of life situations when your loved one is critically ill in Intensive Care!
The Intensive Care team had the perception that your sister would die and that they therefore suggested to “withdraw” or ”limit” treatment.
You have done what I always recommend and what I tell all of my clients that they better listen to their gut and their intuition because they know their family member best and they know how they can handle adversity!
And you did just exactly that! You were not afraid of listening to your gut and your intuition and you used this to your and your sister’s advantage and you saved her life by doing it!
You also interpreted the Doctors saying that your sister is “the most expensive Patient in the hospital” correctly, that they simply wanted to save money by withdrawing, limiting or stopping treatment.
- 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!
But be careful, sometimes Intensive Care teams want to continue treating the most expensive Patients in Intensive Care as well due to prestige, hierarchy, competition for promotions etc…
even though sometimes they shouldn’t continue treating those Patients…
You always have to read between the lines in Intensive Care…
Now, here is what to do next!
First of all, I’m shocked to hear that your sister only got a tracheostomy after 6 weeks in Intensive Care!
That’s shocking to hear, especially with Legionnaires Pneumonia, on 100% of Oxygen and on Nitric Oxide a tracheostomy should have been performed a couple of weeks after admission to Intensive Care!
What’s also important to know is that with her being so swollen and being in kidney failure, a tracheostomy is not only enabling a safer airway(especially by being on 100% oxygen and also on Nitric Oxide) it also would have enabled your sister to come off sedation much faster.
Staying in an induced coma for six weeks is highly risky and by doing a tracheostomy early on, sedation can often be reduced, minimised or even weaned off completely and immediately and therefore your sister might have had a better chance of recovering earlier.
Maybe by not offering a tracheostomy when it would have been clinically indicated early on was part of the “cost savings” because the Intensive Care team expected your sister to die early on. What Intensive Care teams often do is to not even mention best practice treatment options to families in Intensive Care in the first place(I.e. Tracheostomy)- which is what seemed to have happened in your sister’s case- and therefore families are kept in the dark and therefore can be easier “sold” on a “withdrawal of treatment” or on a “withdrawal of life support”.
I’d say that it’s not only negligent to advise you that a “withdrawal of treatment” or a “limitation of treatment” was the only advice they had, it’s also negligent that your sister didn’t have a tracheostomy early on(after 2 weeks) and reduce sedation and opiates(pain killers) in the process.
This would have minimised your sister’s chances to go into multi-organ failure. The longer an induced coma takes, the higher the risk for issues like other organs failing.
Unless there were any other issue that you haven’t shared, a tracheostomy should have been done early on and then sedation could have been minimised, which is usually having a positive follow on effect.
Now your sister has six weeks worth of heavy sedation and opioids(pain medications) in her body system and it’ll take time for your sister to wake up.
That’s why I always say, Intensive Care teams know what to say, they know how to say it, they know when to say it and they know what not to say…
Thankfully you are not like 99% of the families of critically ill Patients in Intensive Care who don’t make informed decisions, who don’t get peace of mind, don’t get control, don’t get power and don’t get influence!
You have invested the time and the resources and you have done your own research and now you are reaping the rewards and you might have just saved your sister’s life by doing what you have done!
Most families in Intensive Care would have never had the guts to do what you did. Not only did you get the correct diagnosis by getting your sister tested for Legionnaire’s disease, you also got the treatment that you have asked for.
You went out and you were strong, courageous and determined enough to start managing the Intensive Care team so that they don’t manage you! Well done!
Here’s what to expect next.
Coming out from an induced coma after more than 6 weeks certainly will be a challenge, however it looks like your sister has come out of the most critical phase. The next phase of moving forward will be challenging too, however given the resilience you, your family and your sister have shown you should continue to be optimistic!
Only performing a Tracheostomy after 6 weeks in an induced coma sounds like a very long time to me and they should have performed a tracheostomy very early on after around two weeks. It probably shows the hesitancy of the Intensive Care team to give your sister best quality and also standard treatment in the first place…
Nevertheless, now that she’s got the tracheostomy and now that she’s cleared all the infections, she can move forward get off the sedation, which may be a longer process.
“Waking up” after six weeks in an induced coma can be a slow and often challenging process. Therefore give your sister the time she will probably need.
“Waking up” after such a long induced coma is a process and not an event.
She will most likely “wake up” in her own time no matter how much you want to speed up the process.
She may also go through phases of ICU psychosis or ICU delirium due to her having so many sedative and opioid drugs during the induced coma.
Once she is slowly “waking up”, she then can focus on getting weaned off the ventilator and the tracheostomy.
This may take time and may test your patience as well.
Make sure your sister continues to get the best possible care and treatment!
Make sure she will get out of bed in a chair once she has the tracheostomy and she should also get good nursing care by having regular showers, washes, mouthcare, pressure area care etc…
Good nursing care can’t be underestimated!
You also mentioned that she’s on kidney dialysis and hopefully that can come off as well soon. Again being in an induced coma for so long comes with undesired side effects such as low blood pressure and therefore the kidneys might not get enough perfusion and fail.
There is probably a chance that your sister’s kidneys will recover with time, especially since you’ve mentioned she passed urine now.
But it sounds to me like you are doing all the right things anyway, well done!
Don’t give up, I know you and your sister have a long road ahead, but you are doing well and once again give yourself a pad on the back for doing what you are doing!
- “FOLLOW THIS PROVEN 6 STEP PROCESS, ON HOW TO BE POWERFUL, IN CONTROL, INFLUENTIAL AND HAVE PEACE OF MIND, IF YOUR LOVED ONE IS A LONG-TERM PATIENT IN INTENSIVE CARE OR IS FACING TREATMENT LIMITATIONS IN INTENSIVE CARE!”
- FOLLOW THIS ULTIMATE 6 STEP GUIDE FOR FAMILY MEETINGS WITH THE INTENSIVE CARE TEAM, THAT GETS YOU TO HAVE PEACE OF MIND, CONTROL, POWER AND INFLUENCE FAST, IF YOUR LOVED ONE IS CRITICALLY ILL IN INTENSIVE CARE!
How can you become the best advocate for your critically ill loved one, make informed decisions, get peace of mind, control, power and influence quickly, whilst your loved one is critically ill in Intensive Care?
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- How to ask the doctors and the nurses the right questions
- Discover the many competing interests in Intensive Care and how your critically ill loved one’s treatment may depend on those competing interests
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- 5 mind blowing tips& strategies helping you to get on the right path to making informed decisions, get PEACE OF MIND, control, power and influence in your situation
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- How you need to manage doctors and nurses in Intensive Care(it’s not what you think)
Thank you for tuning into this week’s YOUR QUESTIONS ANSWERED episode and I’ll see you again in another update next week!
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This is Patrik Hutzel from INTENSIVECAREHOTLINE.COM and I’ll see you again next week with another update!