Hi, it’s Patrik Hutzel from intensivecarehotline.com with another quick tip and case study for families in intensive care.
So today’s tip is about a client that we’re currently working with. Here is the scenario.
The client’s dad has been in ICU for about three weeks now. Initially he had a fracture leg that he got operated on. Initially it was doing well, but then ended up in respiratory distress, ended up in ICU and ended up intubated. He was intubated for about a week, then got extubated, off the ventilator for a few days, got re-intubated again, extubated again, after a few more days. And then he got re-intubated again because he just couldn’t breathe yet. So the family is now facing the following situation. The family has been asked by the intensive care team to agree to a withdrawal of treatment and to hospice, which basically means end-of-life care.
Now, here’s what the family has been telling us. The family has been telling us that he’s on sedation, a mixture of fentanyl and Precedex and is semi awake, obeying commands, which means the brain is working and the brain is intact. Even though he can’t talk because of the breathing tube , he can follow commands and the brain is working.
The other option that the intensive care team has given the family is, maybe looking with a tracheostomy and then move the patient to LTAC or long-term acute care as quickly as possible. And that’s often the default positions for intensive care units to empty their beds as quickly as possible, a) withdrawing life support and sending patients to hospice or b) do a tracheostomy, send patients to LTAC or long-term acute care. And then often patients deteriorate from there because LTACs are not equipped to look after a tracheostomy and mechanical ventilation.
Here’s the interesting part. If a patient is awake and can obey commands, they can also be asked, what would they want? Give them the option? Ask the family, ask the client, ask the patient, do you want to die? Do you want to go into hospice? I’m pretty sure from what the family told me, he’s got the living will that he wants everything done.
So, that’s how cruel intensive care units often are. They have a “one size fits all” approach without looking at, have they done everything to get this patient off the ventilator in the first place and prevent a tracheostomy and not look at end-of-life care. The devil is in the detail in those situations. If you don’t ask the right questions, you certainly won’t get the outcomes that you want.
As I said over and over again, the biggest challenge for families in intensive care is simply that they don’t know what they don’t know. They don’t know what questions to ask. They don’t know what to look for. They don’t know their rights. They don’t know how to manage doctors and nurses in intensive care. And that’s the case in this situation as well. If you don’t know what to look for, if you don’t know your rights and if you don’t know that when someone is coming off a ventilator, is at risk of having a tracheostomy or the risk of going to hospice. You will need to look at the situation from all angles.
When someone is in a situation like that, dozens of things are happening simultaneously. And you need to look at all parameters, all blood results, all chest x-rays, all arterial blood gases, ventilator settings and medications patient is on. The list is endless and goes on. And only then after you’ve digested and understood all of this information, only then should you be engaging in negotiations with the intensive care team.
You will need to negotiate, and we can help you with that here at intensivecarehotline.com, because we had the experts at family and patient advocacy and consulting in intensive care.
If you have a loved one in intensive care, you need help go to intensivecarehotline.com. Call us at one of the numbers on the top of the website, or send us an email to [email protected].
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This is Patrik Hutzel from intensivecarehotline.com and I’ll talk to you in a few days.