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 frequently asked question our readers and the question in the last episode was
I Think The ICU Is Keeping My Father Sedated For Too Long, How Should I Help Him!?
You can check
out last week’s question by clicking on the link here.
In the last PODCAST, I interviewed Ileana who lost her 91 year old mother in LTAC, initially was in Intensive Care because of pneumonia, became ventilated, ended up having tracheostomy and PEG tube, shifted to the Long Term Care Facility (LTAC) and eventually died.
You can check out the last podcast with Ileana here
https://intensivecarehotline.com/blog/interview-with-ileana-whose-mother-passed-away-in-ltac-after-icu-stay/
In this week’s Podcast, I want to share an interview with Rachel who saved her father from going to LTAC by seeking professional consulting and advocacy, got him off the ventilator and the tracheostomy and he’s now on his way home.”
You can listen to the podcast here or read the transcript below.
ICU wanted to transfer my Dad in the LTAC facility but I was able to keep him in the ICU. Your professional consulting and advocacy did help me a lot!
Patrik: Hello, and welcome to the intensivecarehotline.com podcast. Intensivecarehotline.com helps families for critically ill patients in intensive care, to help them make informed decisions, get peace of mind, control, power, and influence. I’m your host, Patrik Hutzel from intensivecarehotline.com, founder and editor. And today in this podcast interview and interview series, I’ve got a special guest, Rachel. Hi, Rachel. How are
you?
Rachel: I’m good, thank you. How are you?
Patrik: I’m very good, thank you. Thank you so much, Rachel, for coming on to this call. I really appreciate it. Rachel, you’ve had your father in ICU over the last few weeks and you became a member of our membership, and it would be really great for our listeners if you can share your experience of having your
dad in intensive care. Then he was really threatened with the fact that he might go to a long-term acute care facility, but you managed to keep him in the right environment. So that’s the brief version of the story, but I really want you to elaborate on what happened and how you managed to get best care and treatment for your dad.
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Rachel: Sure.
My father ended up having to go into an emergency open heart surgery for having an aortic dissection type A. He went into the surgery and ended up with a lot of complications. He ended up needing to be placed into an induced coma for 48 hours and he was having trouble waking up. He finally did wake up and got the tube removed from his throat and ended up with pneumonia and the complication he was facing was he had his kidneys went into
failure as a result of the operation. He also had some loss of blood flow to his lower extremities from his fingers and his toes and we were told that he was going to end up probably having to get part of his foot amputated.
All of these things, I wasn’t sure what the outcome was gonna be because he was not waking up and he barely … I mean when he woke up after the induced coma, it was very brief. The ventilation tube was taken out for maybe two days and once he got the pneumonia they ended up having to trache him and he was back in like a semi coma form. I was very concerned that he wasn’t waking up. I started researching and going online and trying to figure out why he wasn’t waking up and then I came across your website and I started reading similar stories about my father not waking up and it gave me a lot of hope because there was similar stories and they weren’t so negative. I didn’t know if my father was gonna be in
a vegetative state or if he had brain damage. As soon as I became a member, I signed up a membership because I wanted to get more information and detail. I spoke to you and you gave me a lot of great advice and positive outlook on everything. I started taking your advice and talking through everything that was going on.
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Not long after I became a member, they said that they wanted to move my dad to an LTAC facility because he was still on the trache. It was about two weeks after he had the pneumonia. He still had the trache and he was undergoing dialysis
and I decided to get him in and go on a tour of one of the facilities. I wasn’t happy at all. Everybody looked like they were on their way out. People looked like they … There was not much hope. It was intensive care patients that were getting one nurse to six patients at a time of care and I didn’t think that that was a good idea. I spoke to you a lot. You gave me a lot of good advice on how the more you know and you know knowledge is power. The more questions you ask, the more they know that
you know and they kind of backed off of me. I was able to, because of all of the talking, I was able to get my dad to stay in intensive care the whole entire time until he had the trache taken out.
There was a lot of relief from everything and I did get a lot of beneficial information from talking with you and I just stuck to my guns and continued to fight for my father to stay in the hospital and he was able to overcome like all of the
challenges. He ended up waking up and progressing much better to where he wasn’t even a candidate to go to one of these facilities.
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Patrik: Absolutely. That is such good news. Thank you for sharing to this point, Rachel. Just for our listeners who don’t know what an LTAC is, or long-term acute care, it’s basically a facility for either long term ventilated patients or tracheostomize patients who have a trache. The reality is patients go from intensive care with intensive care doctors, intensive
care nurses, going to facilities like you mentioned. There’s one nurse for six patients but patients are still needing the intensive care skills and they simply don’t get them in LTAC. I can’t tell you how many families come to us who have a loved one in LTAC when it’s often too late. Patients still need intensive care and they’re just not in the right environment and they often die. Your father will be … Is in the right environment and he will be eternally grateful for what you’ve done to get
him in the right environment. Can you share a bit more like when your dad, sort of when you were first confronted with the fact that he might … That they might want to send him to LTAC. Did you sort of feel a lot of pressure by the hospital? How did that sort of unfold for you?
Asking the right questions was helping Rachel to get the ICU team to back off!
Rachel: Yes I did. I felt that the person who performed his heart surgery was the one giving … They brought up insurance and mentioned that insurance wasn’t going to cover his stay much longer and I just kept … What I had to do was stay away from the social workers and the case managers and I had to basically dodge everyone. You helped me put together a list of questions that kind of made them back off because they knew that I was on top of things and they
realized like that I wasn’t budging as far as my decision on where. They said a lot of the nurses that were in the hospital encouraged me to be picky and everyone said that these facilities are not something that … They understood my concerns because they know that there’s a potential that my father could have regressed even more by leaving ICU and going to a place like this. I told them that I really want him to go forward and not backwards. I lost my mom and she was in ICU and taken out too
soon so I needed that, that also made them listen to me. I just fought for what I felt was right.
They decided, they tried to hold a meeting with me and I cancelled the meeting because I didn’t want the tyranny alternative for my dad leaving if there’s something good like a regular rehab facility. At the point that he was at, he really didn’t have many options other than the LTAC facility. There weren’t many places that would take
him.
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Patrik: Right. That’s a good point. You say your dad didn’t have any option. I wanna add on there, he didn’t have any perceived options. Now the option from my perspective at the time when you contacted me was clearly to keep him in the environment that is most conducive for his recovery. This is a big problem for families. They think they have no options but yes you do have options
if you’re doing your own research and if you’re not backing off and also if you understand that sending somebody to LTAC is often not a clinical decision. It’s a financial decision, which is ridiculous.
Rachel: Yes. It’s all about … Yes. I agree. I feel like it’s all about a business. It’s all about politics and there’s not much … There’s no compassion in a family member being ill. It’s more about time and not so much about
the person who is experiencing this. Unfortunately, a lot of time in these situations it’s mostly a waiting game and they don’t have the time to wait.
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Patrik: Correct.
Rachel: Wait for the improvements so that the person doesn’t have to regress and
go to one of these facilities and fall behind and jeopardize their life.
Patrik: Absolutely. But then there’s another aspect and we’ve talked about this, Rachel, which I think is a huge one in a situation like that. It’s also about continuity of care. You’ve got a patient. You’ve got your dad who’s in ICU very sick and now he’s meant to go to another facility. He’s probably still facing complications. What a patient like that
needs in a situation like that is continuity of care. It’s stressful being a patient in ICU, let alone going to another facility into the unknown. That is a very stressful event.
Rachel: Correct.
Patrik: It’s stressful enough being in intensive care in one hospital, let alone you’re going to be shipped around between different facilities. That is not
conducive to a meaningful recovery.
Rachel: That’s correct. I also argued because of my father’s loss of blood flow and the possibility that he had to get his foot amputated, had they moved him to the LTAC facility where would they have performed that amputation? They said go back at the hospital so I said why would you send him to the facility and then you’re gonna have to send him back to the hospital if he needs to undergo
surgery for that. He might as well just stay where he’s at and let him get better where he is with the care that he needs.
Patrik: Absolutely. That just makes so much sense, doesn’t it? It’s also often I don’t know I think we talked about this too. It’s also about then families. I understood that the long-term acute care facility would have been much longer to travel for you and for other family
members.
Rachel: Yeah that was another thing.
Patrik: It’s also about if your dad had gone there, you need to be there. How can you be there if it’s further away?
Rachel: Correct. There weren’t very many facilities. I live in South Florida. They only have about three that were in somewhat
30 mile proximity, but between my brother and myself being able to care for him it was very inconvenient for both of us. That was another argument that I stressed. Even all of the reviews that I kept looking at were just horrible on all of the facilities. That was a big issue for me that I stressed.
Patrik: Right. Right. Also a lot of LTACs, they claim that they have a quote unquote ICU on site when patients deteriorate, but
again I know from experience that those quote unquote ICUs are not ICUs like in a hospital. They don’t have really properly ICU-trained nurses. There’s often one doctor for the whole facility. It’s just not the same and quite frankly it costs lives. I really think with what you’ve done, you’ve given your dad the best chance of recovery and it looks like it’s paying off already. Can you share with where your dad is at now?
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Rachel: Yes. I had my father, my father remained in ICU for six and a half weeks and after about two weeks they wanted to send him to the LTAC facility. I was able to get him to remain where he was for an additional almost four weeks which is very good considering that they said they had no time or space for him and it still happens. He ended up getting transferred to a regular rehab facility like the more cardiac rehab facility that is gonna only like
does about three to four hours of physical and occupational and more aggressive rehab that’s gonna get him to steps ahead from where he is now, not in the place where he would have gone where he was just basically bed ridden and could barely … The most they mentioned right away that they did for any type of physical therapy. That was like a big concern for me. All they are able to do is bedside therapy and really when you’re in a bed for that long you need to get out. You need to do physical
therapy to get you to the next step. That’s where he is now. He’s supposed to stay there for about two weeks and I think he’s gonna be in a much better state this route than having to have gone to an LTAC facility.
Patrik: Absolutely, absolutely. One of the biggest challenges really is when somebody’s on a ventilator or has a trache and is faced with the threat of going to LTAC, the reality is the only place where somebody can be weaned off a ventilator and a trache is intensive care because simply you need the specialist skills of an intensive care nurse, of an intensive care nurse, of a respiratory physician, and you get that in intensive care whereas if
you go to LTAC there are no intensive care trained nurses. There might be one respiratory physician for 30 patients and there might be one doctor for 30 patients. You’re basically going from a well skilled, well staffed intensive care environment that’s appropriate for somebody on a ventilator to no skills and no support structure to facilitate getting somebody off the ventilator. I’m absolutely shocked when you’re saying that the LTAC told you they’re not doing any physical therapy there. That
to me is just like that’s a nightmare.
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Rachel: Yes. Yes. They said they pretty much do the same exact therapy that they would do if you’re remaining in ICU which is not much. It’s out of the bed, sitting up, dangling your feet, doing little minimal activity and initially they said my father would be there two to three months and just by being in a bed for six weeks he’s lost a lot of strength and a
lot of muscle mass and I can’t see where that would have benefited him.
Patrik: Absolutely. The only people it would have benefited for your dad to go to LTAC would have been the ICU because they would have emptied their bed. ICU beds are in demand. It would have probably benefited the health insurance but even that is arguable because that is … You know they might have paid for a few more days in ICU but now they’re paying
for rehab which is probably way more cost effective compared to LTAC. For the health insurance, it actually might even be a better financial deal where your dad is at now compared to many months in LTAC and potentially pass away.
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Rachel: Correct.
Patrik: Did you ever have to, in all of this, did you ever have to sort of negotiate with the health insurance as well? Was that part of what you were doing in the background as well?
Rachel: No because I just avoided them altogether. I took your advice and I didn’t really talk with them at all. I just stayed clear from those people. I did … One of the ICU intensivist doctors was more on my side and he said whoever’s on my side to stick … Have conversations and communicate with them and that’s pretty much what I did. I just stayed speaking to the nurses and the doctor who seemed to be … Who agreed with me and the ones that were not I
just stayed away or shut them out. I got a lot of pressure. Every time I walked in there, they said oh have you looked at any more places? Have you been to … Have you decided on any other locations for your dad? I think they were like put under pressure to like put pressure on me but every time they asked I would just no, no I haven’t found anything. That’s not an option. I just stuck to my word and wasn’t taking no for an answer. They listened but it was a challenge but it was worth
it.
Patrik: Absolutely. I’m so glad you’re saying that it’s worth the fight, that you stuck to your guns because I’m talking to a lot of people. They are intimidated and they find often don’t find the courage to do what you’ve done.
Rachel: Yes. A lot of them told me oh yeah we … You’re strong. You’re good. A lot of the nurses knew, I think there were some
nurses had mentioned like they had never had patients for that long so it was something out of the ordinary but it was something that was obviously it was … It was possible. It happened so it’s not impossible the way that they initially made it seem.
Patrik: Absolutely. Absolutely. It’s really great that you’re sharing that because you’re really encouraging our listeners to take action. I mean that’s what it often comes down
to. Do your own research. Take action and see what happens. I mean nobody can force you to make decisions for your dad while he’s in a coma that you don’t think are helping your family member. Nobody can force you. As I said it’s also often a case of you didn’t have to go back to the health insurance, but in retrospect if another person is in a situation like that you might go back to the health insurance and you might say hey maybe a few more days ICU and then go into a ward and then going onto
rehab is probably much more cost effective for the health fund as well.
Rachel: Correct. I agree.
Patrik: But the most important thing really is your dad is improving. That is the most important thing. What other challenges do you think you’re facing from this point onwards?
Rachel: I just
think … I thought that maybe he could stay in a step down a little longer which I mean I was thinking that we have kept him in the ICU so long and … Other than that I mean I’m glad that I became a member of your … I got your membership like within two weeks
that he was there. I’m glad that I did it quickly. I researched it right away and the reason I did this is because my mother passed away a year and a half ago. She was in ICU and she was moved out of ICU too soon. It was all a learning experience for me. Had I not gone through what I went through with my mother, I would have never been so on top of what was going on with my father. Because of that, I was very very in tune with everything that was going on and I kept looking up things online and
they said don’t look online but that’s not true. It gave me hope. I found similar scenarios to what my father was going through and now he’s out of his coma. He’s alert. He’s not brain damaged. Although he still has a long road to recovery on his physical state, he’s here and he’s alive and he’s well and he’s made a lot of progress from where he came. I really … I mean I’m happy with what’s happened so far.
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Patrik: No that’s great. What’s the
next step for your dad? Do you know already is he close to going home?
Rachel: He should be coming home within the next two to three weeks and he’ll be living with me and he will need like assistance. He won’t be 100% functional on his own but he’s undergoing the issues of his foot still possibly needing an amputation later on and that whole part is still something that’s gonna take time to for him to improve
on.
Patrik: Sure. Sure. But I mean it’s such a great story to hear, I mean going from really if he had gone to LTAC I think it would have been really disastrous and now he’s … Yes he’s probably got still a way to go to fully recover, but it looks like he’s on the best way to achieve that.
Rachel: Yes. I agree.
Patrik: That is really fantastic. The rehab facility where he’s at now is close to home for you? You don’t have to commute hours?
Rachel: Yeah. It’s a lot closer. It’s very close to where he was in the hospital in ICU.
Patrik: That’s really great. That’s really great. Rachel, I can’t thank you enough for coming onto
this call and sharing this with our listeners because I think you have encouraged other family members who are in a similar situation and I know there’s probably hundreds of them out there all over the world who face similar challenges. You can overcome those challenges by doing your own research, by doing the right sort of advocacy that’s needed and yeah I can’t thank you enough for sharing this with our listeners.
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Rachel: No absolutely. Thank you for helping me and guiding me through this whole … It was a stressful, very very stressful event, and I just learned from this that
knowledge is power. The more you know, the more … The less they can intimidate you in the hospital and to always have a positive mind frame through it all because the more people that you talk to that don’t have the knowledge will discourage our give you that negative thoughts towards everything but as long as you stay positive and ask the right questions and are on top of things, anything is possible.
Patrik: Yeah. Taking
actions I believe trumps everything.
Rachel: Yes.
Patrik: You know taking actions speaks louder than words and that positive mindset is really important. The positive mindset is invaluable. You know because no matter the outcome, staying positive will help you on any aspect. It’s just puts you in the right frame of mind. So Rachel thank you once again for
sharing all of this with our listeners. Was there anything else-
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Rachel: No thank you. You’re very welcome.
Patrik: You had to add, was there anything else you wanted to add or … I think that pretty much summed it up really well, the
situation.
Rachel: Yeah. I think I covered basically everything that was important throughout this whole challenging experience but it was all worth it.
Patrik: Absolutely. Absolutely. Thanks again Rachel for coming onto this call. I really appreciate it and I hope you had a good rest of the day. Thank you so
much.
Rachel: No problem. Thank you. You too.
Patrik: Thank you. Bye bye.
Rachel: Bye bye.
Patrik: Bye.
“Thank you very much for being a part of the previous
series of 1:1 consulting and advocacy sessions. We hope you will find these new upcoming episodes informative and empowering.
Kind Regards
Patrik
