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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 in this series of questions from our client Robert and the question last week was PART 8 of
You can check out last week’s episode by clicking on the link here.
You can find the previous questions answered from Robert here
PART 1, PART 2, PART 3, PART 4, PART 5, PART 6 and PART 7
In this week’s episode of “YOUR QUESTIONS ANSWERED“, I want to answer the next question from our client Robert, which are excerpts from email counselling and consulting sessions with me and the question this week is
My 68 year old mother is in ICU with gastric perforation and she’s not “waking up” after the surgery! Will she need a tracheostomy? (PART 9)
Robert continues with his mother’s situation below
Hi Patrik,
here are more questions because of all the things that have been happening in the last 24-48 hours with my Mom.
- Assuming that the kidneys continue to deteriorate, the next logical step does seem like dialysis. Doctors are sounding like that’s not something they advocate for or recommend. But, I don’t understand the downsides to this (other than cost).
- I know you are familiar with the U.S. healthcare system, but do you know if hospitals usually address patient treatment based on whether they’re on private insurance or government insurance?
- If they *are* influenced by that, is there an appropriate way to communicate to the hospital staff that we are willing to pay out-of-pocket for any costs (should that be required)?
- My sense (based on interacting with them) is that if we show conviction that we’d like dialysis done (should it be necessary) that they will follow our wishes. But, they may try to talk us out of it.
- We asked the question whether there’s any benefit to doing dialysis sooner rather than later (i.e. before irreparable damage happens to the kidneys). Their response was that studies generally show that there’s not that big of a difference doing it early vs. doing it a few days later in the process. What do you think?
- Compared to other procedures she’s had, where does dialysis fall in terms of severity of the procedure and what’s involved?
- Right now, the doctors have said we should give her a couple of days to see if she breaks through on one or more fronts (kidney starts picking up again, breathing improves, etc.) But, if things don’t get appreciably better, then we need to sit down and have a tough conversation.
- My instincts tell me that though the staff are well intentioned, at some point, they become reluctant to invest more resources into a patient that is showing a downward trajectory and may not recover. They’re solving for average outcomes — we are solving for OUR MOM. I’m not accusing them of being financially motivated, but I understand the practicalities of having finite resources and wanting to do the best for the most number of people. Any guidance on how to balance this mismatch in incentives? (As it turns out, we have the financial means to pay for the healthcare services required, should we need to pay directly ourselves).
All information appreciated. This is probably the most disheartened the family and I have been because all signs seem to be pointing downwards, and the staff are hinting that we may not want to proceed with a dialysis.
Thanks for your help.
Robert
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Hi Rob,
Please see my answers to your questions below in red.
- Assuming that the kidneys continue to deteriorate, the next logical step does seem like dialysis. Doctors are sounding like that’s not something they advocate for or recommend. But, I don’t understand the downsides to this (other than cost).
> I don’t understand why they wouldn’t advocate for Dialysis. Besides critically ill’s Patients lungs failing and needing ventilation, the kidneys are the next organ that’s failing in critically ill Patients. Haemodialysis is being used across the board in many critically ill Patients and is the next most commonly used major life support mechanism besides mechanical ventilation and inotropes/vasopressors for low blood pressure. I understand that the doctors are despondent and I will address their attitude at the end.
The reality is that many critically ill Patients in Intensive Care go into acute kidney failure, they go on Dialysis and in about 90% of all cases the kidneys do recover if Patients survive their critical illness
- I know you are familiar with the U.S. healthcare system, but do you know if hospitals usually address patient treatment based on whether they’re on private insurance or government insurance?
> I am familiar with some of the aspects of the US healthcare system, we are dealing with clients in the USA all the time. Hospitals will definitely base treatment on whether a Patient is having private health insurance or govt. insurance. From experience with other clients I would strongly argue that having private health insurance is of benefit in the US, UK and Australia
- If they are influenced by that, is there an appropriate way to communicate to the hospital staff that we are willing to pay out-of-pocket for any costs (should that be required)?
> It may be a strategy that you want to pursue. Sometimes it can also help if I can help you position your mother’s diagnosis, her prognosis as well as her care and treatment. I.e. for other clients we are talking to doctors, nurses and we also dial into family meetings if they want us to. This would be based on experience but also knowing what goes on “behind the scenes” and “behind the curtains” in Intensive Care. I can give you much more information on this strategy if you want to either let them know that you are happy to pay for treatment or if you want me to talk to them
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- My sense (based on interacting with them) is that if we show conviction that we’d like dialysis done (should it be necessary) that they will follow our wishes. But, they may try to talk us out of it.
> If your mother goes into acute kidney failure, she will need dialysis. Given that there are no treatment limitation orders as far as I’m aware from your communications, it would be negligent of them not to offer dialysis in case of acute kidney failure
- We asked the question whether there’s any benefit to doing dialysis sooner rather than later (i.e. before irreparable damage happens to the kidneys). Their response was that studies generally show that there’s not that big of a difference doing it early vs. doing it a few days later in the process. What do you think?
> Generally agree with this, from my experience the kidneys are the “most forgiving major organ” and unlike in respiratory or heart failure the kidneys can “wait” a couple of days. Given that the medications (Diuretics like Frusemide or Lasix) don’t seem to work, the next logical step is to get the Dialysis going. Trying Diuretics first is the right thing to do and if it doesn’t work then get the Dialysis in. They seem to be following a normal pathway there unless they have been trying Diuretics for many days (>3) with no success?
- Compared to other procedures she’s had, where does dialysis fall in terms of severity of the procedure and what’s involved?
> In Intensive Care terms it’s a “normal” procedure. Your mother will need a vascular catheter which is similar to a Central venous catheter that she will already have. Therefore the biggest risk is probably in inserting another venous catheter and then get the Dialysis going. It’s certainly adding in another layer of complexity, however it’s a layer of complexity that ICU doctors and nurses should be well trained and well experienced in. They will need to closely monitor your mother’s Electrolyte’s once she’s on Dialysis, her Potassium levels in particular.
- Right now, the doctors have said we should give her a couple of days to see if she breaks through on one or more fronts (kidney starts picking up again, breathing improves, etc.) But, if things don’t get appreciably better, then we need to sit down and have a tough conversation.
> Have they used those words “tough conversation”? Let’s wait and see. From everything you are describing thus far, your mother is currently requiring two major forms of life support
a) mechanical ventilation via tracheostomy
b) low doses of inotropes/vasopressors for low blood pressure, with a view of being off inotropes/vasopressors if I interpret your comments correctly
There is potential for a third form of major life support to be added in soon in form of Dialysis. If inotropes/vasopressors were high and Oxygen on the ventilator remained at 100% for > 72 hours I would be extremely concerned.
Intensive Care teams tend to be negative by nature and by default. It helps them to stay in control of the outcome and also the meaning they want to attribute to a particular situation and/or critical illness. I have written about this extensively on my blog, please find related articles/videos here
- My instincts tell me that though the staff is well intentioned, at some point, they become reluctant to invest more resources into a patient that is showing a downward trajectory and may not recover.
> very good observation Rob, you’re right on the money there
They’re solving for average outcomes — we are solving for OUR MOM. I’m not accusing them of being financially motivated, but I understand the practicalities of having finite resources and wanting to do the best for the most number of people. Any guidance on how to balance this mismatch in incentives? (As it turns out, we have the financial means to pay for the healthcare services required, should we need to pay directly ourselves).
> You’re a very good observer. From everything you are describing and telling me, I’m certainly very concerned about your mother’s situation, however I still don’t think there is any need to panic. I have seen those situations over and over again. Of course being critically ill in Intensive Care is as close to death as anyone can probably come, however please also keep in mind that “only” around 6-10% of Patients in Intensive Care don’t leave ICU alive.
You don’t need to accuse them of being financially motivated, every ICU has a financial budget and the medical director and the Nurse Unit manager tend to be in charge of a budget that they are accountable for. Every communication in Intensive Care including communication with families in Intensive Care is implicitly or explicitly around “the elephant in the room” ($$$)
I believe that trying to help you to
a) get perspective around critical illness and Intensive Care and
b) trying to help you position your mother’s diagnosis, prognosis as well as her care and treatment are the right “positioning tools” to begin with. This is probably your biggest leverage tool in all of this. I hate to say it but unless a family is really prepared to do what you and all of our other clients are doing and get support, Intensive Care teams will get what they want because they simply know what to say, when to say it, how to say it and what not to say… I’ve seen it over and over again.
My best advice to balance this “mismatch of incentives” is really to call them out on it if you need to, but it’s too early to do that I believe.
To give you a quick example, the client that we’ve been working with since the end of November last year and just left ICU alive last week was on public insurance (govt. insurance) and the family didn’t have the means to pay for private treatment. Our fees came in at a much lower rate for the family compared to sending him to a private facility where they would have loved to treat him.
We were able to help the family by bringing in our clinical experience but also our advocacy service, as well as knowing what’s happening “Behind the scenes” in Intensive Care. We leverage that knowledge for the benefits of our clients and help them get the outcomes that they want and deserve.
All information appreciated. This is probably the most disheartened the family and I have been because all signs seem to be pointing downwards, and the staff are hinting that we may not want to proceed with a dialysis.
> Critical illness and Intensive Care has many ups and downs for families and especially since you’ve been dealing with this situation since December I believe, you and your family’s sanity is as important as your mother’s well-being!
Yes, your mother has gone backwards and she’s facing many challenges. But she’s not facing any challenges that any Intensive Care doctor or nurse hasn’t seen before! Nobody can be sure of any outcome, but I can see that if the Antibiotics are working and she’s coming off the inotropes/vasopressors and oxygen on the ventilator is coming down, she is making slow progress.
Intensive Care is often two steps forward and one step back and even though I might sound like a broken record, patience, persistence and positivity…
Take one day at the time and make sure that you and your family keep looking after yourself, it’s very important, if not the most important ingredient!
Last but not least, you mentioned
“In talking to the doctors, they were very despondent today. They reiterated that she’s having issues with multiple organs, and the kidneys are the most concerning. They seem really, really worried and the prognosis that we’ve heard is that she has about 20-30% chance of making it through.”
Yes, your mother is having issues with multiple organs, namely two, the lungs and the kidneys. Many critically ill Patients in Intensive Care are facing heart, lung, kidney and liver failure… Now, again your mother’s situation is critical and she’s very sick, but again whenever there’s life there’s hope.
My advice would be to get the Dialysis going, hopefully they can continue reducing the oxygen on the ventilator and they can cease the inotropes/vasopressors, if they can achieve that in the next 48-72 hours it would be a great achievement.
If they can achieve that it probably won’t make them more positive in their outlook and I believe I can give you perspective around that.
Also, you can’t control their outlook and their negativity, but you can control your outlook and you can control your response to their negativity. You’re doing that already by trying to get perspective.
I really hope this helps Rob, I know this is a massive challenge for you and your family! You’re doing well and you keep “hanging in there”. They are not the words I want to use for any situation really, but I also know that’s how families in Intensive Care often feel.
Also, try and make meaning out of the situation, I believe it helps. What do I mean by that? I’m a strong believer that things in life happen for a reason. What’s the reason that you and your family are faced with this massive challenge? I don’t know the answer, but I’m certain you’ll find it if you keep looking… Most families in Intensive Care who don’t give up have found their meaning…
Wishing you and your family all the very best!
Warm Regards
Patrik
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
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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!