Podcast: Play in new window | Download
Subscribe: Apple Podcasts | RSS
My Mom Went from LTAC (Long-Term Acute Care) to a Skilled Nursing Facility with Tracheostomy & Was Back in ICU Within Less Than 24 Hours
Patrik: Hello and welcome to another intensivecarehotline.com podcast. At Intensive Care Hotline, 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 intensivecarehotline.com podcast, and today I want to welcome Debra. Debra is one of our clients and we worked with Debra for quite some time now for a few months, and Debra really wants to share with the world and mainly our audience in the U.S. of what happened to her mom in hospitals and in long-term acute care facilities so that the world and, again, especially our audience in the U.S., knows what to pay attention to when they have a loved one in hospitals or in intensive care.
Welcome, Debra.
Debra: Thank you. Thank you, sir.
Patrik: Thank you. Debra, I know you’ve been through a lot in the last few months with your mom being in hospital and currently in intensive care. Do you want to share what happened to your mom, and the journey of your mom, and where your mom is right now?
Debra: Yes. Yes. So, my mother is 74 years old, extremely active. She’s lived independently. She handled all of her financials and she drove and she’s a very independent person. One day, she was at a yard sale. She tripped over something in the person’s yard. She developed a severe brain bleed and an aneurysm, which caused a stroke, and she was rushed to intensive care. She went to a large facility in St. Louis, Missouri, and she was given a 5% chance of survival.
Fortunately, she did pull through and at the time, I was alone making decisions for myself with limited experience with medical situations, especially something this dramatic, but the doctors told me she needed to have tracheostomy. She needed a G-tube in order to survive. Of course, I agreed to those things because my goal was for my mother to survive. But soon after, within days of performing those procedures, they began talking about the next step of care now that she has the G-tube, now that she’s been tracheostomized, she needs to be transferred to a long-term acute care facility.
Recommended:
The discharge nurse referred us to a facility close to our home because she was two hours away. There was discharge planning. I met with the representative from the long-term acute care facility, and what’s important to know is that the person that you will meet from the long-term acute care facility is not a clinician in most cases. They are bureaucrats. They are administrators, and their job is to get your business. The discharge plan, because my mother had two brain surgeries and she had a shunt, included a follow-up with a neurologist, and she’s a CAD patient. She had coronary artery disease (CAD), and so she needed her medications restarted, but the long-term acute care facility only had a primary care physician on staff. Their policy was not to restart medication until the patient was discharged home and they completely ignored the fact that she had a shunt and she needed to be followed neurologically.
The services I received from Intensive Care at Home, even after she left the facility, they continued to communicate with me. I got a copy of the medical records because the long-term acute care facility did not have electronic medical records, which is very important. They would advise me of what to look for – dehydration, tachycardia, high respiratory rate.
After about three weeks, the representatives from Intensive Care at Home advised me that this was just really not a conducive environment for my mother. So, against medical advice, and they’ll scare you with all sorts of things, but against medical advice, we signed my mother out and took her by ambulance to an emergency room. They discovered that she had pneumonia, and all of her blood panels were way out of whack. She was very ill.
Mr. Hutzel and his team continued to follow her medical records in that location, and they advised me what to watch for. I take pictures. So eventually, that facility determined that she was stable and that she should be moved to another facility. I did not consent. In the State of Missouri, next of kin does not automatically get guardianship. I had to seek legal conservatorship with my mother, and I did not consent. I filed a complaint with Medicare and Intensive Care at Home helped me prepare an argument for Medicare. I have an administrative hearing scheduled for later this month about what took place at that intensive care.
They took a test and said that she did not have C. diff (Clostridium difficile), but they transferred her against my consent to another facility. That facility determined that she did have C. diff, along with other infections and that she would need to be isolated. So, for the 8 weeks, she was in a separate long-term acute care hospital. This facility was much better. They had electronic medical records, which Intensive Care at Home monitored for me. They advised me what to look for. They kept me abreast of changes in her lab. What was really helpful is that they told me what to ask the doctor. That did two things. They knew someone else was watching and they wanted to document that things were being taken care of, so I’m very appreciative of that.
Again, at some point, they were able to wean her off the ventilator. She did begin to communicate with head nods, and they felt that she had graduated from the long-term acute care facility and that she should go to a skilled nursing facility.
The nurse that watches my mom’s records, Cheryl, was very much opposed to a long-term acute care facility. I did not consent. I appealed with Medicare. The long-term acute care facility transferred her anyway. Within 18 hours of them transferring her against my consent, she was septic. She had not received any medication. They had not taken her vitals. I got to the hospital, which is two hours away, as soon as I could, along the skilled nursing facility. She was tachycardic and her blood pressure was over 200, and she had a fever of 102. They immediately called the ambulance and transferred out of that skilled nursing facility.
On the way to the emergency room, Medicare calls, and they advised me that I won my appeal, that the long-term acute care facility did not provide enough documentation to support their decision to move my mother. I told them it was too late. They moved her without my consent. They moved her even though the appeal was pending, and they continued. So now, they’re in big trouble with Medicare because they violated their Medicare policy and transferred her, even though an appeal was pending.
At the emergency room, they discovered that the shunt was misplaced and that my mother was septic. That was July 4th. She has been in the hospital, intensive care, since that time. She’s undergone two additional brain surgeries. They’ve been unable to regulate the spinal and brain fluid in her brain, which has caused tremors and seizures and her prognosis at this point, it’s very grim. It’s very hard for me because on July 3rd, she was participating in physical therapy. She was doing the leg movements, she was doing the arm movements, she was communicating, and what they told to me is that the skilled nursing facility would be a graduation for her, and it turned out to be a death sentence.
Patrik: Obviously, knowing your mom’s situation closely, it’s been heartbreaking to watch what unfolded there because I know you put a lot of effort in to advocate for your mom, and then for the LTAC to literally go behind your back and send her off to a skilled nursing facility. Now, she’s back in ICU. Beggars’ belief. It really beggars’ belief in terms of how your mom and you as a family have been dealt with.
It is another reason why we are saying, we’ve been saying for the last 10 years, “Don’t let your loved ones go to LTAC. Don’t let your loved ones go to a skilled nursing facility.” I don’t even know how to describe it, how families are dealt with. Unfortunately, this is not unique to your situation. We see this all the time. Often, we can prevent it, but then a lot of families come to us when it’s too late. It’s really interesting to hear that you are saying you won your appeal with Medicare, and yet the hospital decided, or the LTAC decided to do whatever they want anyway and put your mom in a life-threatening, potentially deadly situation now. I have no words for this, Debra, and I’m not sure what your next steps are or whether you want to talk about it, but I guess the lesson there really is for any families, you can’t start doing your own research early enough.
Debra: You can’t, and what’s important that I would like to know is that I never consented to my mother being transferred to a lower level of care when she was in ICU, and they wanted to send her to an LTAC. I did not consent. They sent her without my consent. So, that puts me in a really good position with Medicare. Then of course, with the notes that you wrote after what your team put together to help me make that argument very beneficial. When the LTAC decided to transfer her to a skilled nursing facility, I did not consent. I filed an appeal and in the window for an hour or so, they transferred her within an hour of me filing an appeal. So, they found a loophole. Well, we didn’t know she filed an appeal, and they transferred her, and they lost that case.
My advice is to never consent. If they force your hand and they’re going to do it anyway, any adverse reactions are the responsibility of the facility. If you do consent and if you do sign papers, they will use your consent to say that you were informed and you agreed. So, I have not consented to any lower level of care for my mother ever.
Where we are today, she’s in intensive care and the doctors are telling me that they have reached the limit of medical possibilities for her. The spasms or seizures that she’s having could resolve over time, but they can’t say for sure. She was weaned off of the ventilator previously. Now, she can only go maybe 20 minutes on the ventilator.
I have not consented to end-of-life discussions for my mother. I want them to continue to do everything possible. If there are no other medical options for my mother, for which I’m not convinced that’s the case, I want to take my mother home. I don’t want her to remain in a hospital and spend her last days in a hospital environment.
So, I have looked for the United States, the options for Intensive Care at Home, what I can get for palliative care, what I could get for hospice care, even though hospice is not my consideration, because then all they do is keep her comfortable, and I haven’t given up on my mother.
So, I’m going through the bureaucracy with the facility. She’s at a teaching facility, so she has a new doctor every seven days who has a difference of opinion, but I want to pursue palliative care with Medicare and the facility to take my mother home. I’m not convinced that she cannot get back to where she was prior to this last episode before she became septic, before they put her in the skilled nursing facility. Her vitals are what you would expect, but I don’t think I’ll do any more brain surgeries for her. She’s had four brain surgeries and she’s miserable at this point, but if she can regain consciousness and she can have some sort of quality of life in her last days, I will pursue taking her home. I wish I was in Australia where Intensive Care at Home was more of a thing than it is in the United States. United States, it’s terrible to arrange it.
Patrik: Yeah, it’s not impossible to arrange it, but it’s more difficult, also dependent on your location. Debra, another question here. I remember when your mom went from LTAC to the skilled nursing facility, which obviously is a lower level of care, I remember reading through your mom’s notes, and from what I understood at the time and from what we advised, she was very close of having the tracheostomy removed.
Debra: Correct.
Patrik: We felt it was just a matter of days of staying where she is, and then the worst would be over for her, with the tracheostomy being removed, then she goes to a lower level of care. Correct me if I’m wrong here, Debra, the lower level of care she went to was also two hours away from you. Is that correct?
Debra: That is correct. It was two hours away. Their patient-to-doctor ratio was 20:1. They had a respiratory therapist who only worked Monday through Friday, 8:00 to 5:00. They transferred her on a Friday. Medicare says that the patient must see a physician within 24 hours of admission. We were at hour 16. She had not seen a physician. The people that you talk to are bureaucrats and they are administrators, and they’re trying to sell you something. So, they show all of the monitors that they have. “We have nurses who are trained. We have monitors.” Yes, you had a monitor, but you had a single nurse on the weekend with no respiratory therapist, who saw that my mother was tachycardic and did nothing. By one o’clock in the afternoon, they had not taken her vitals. She did not have her PM medicines, and she had not had her AM medicines, which resulted in her going to the emergency room.
I cannot express enough that the people who are advising you are bureaucrats. They are administrators. They are not clinical, and their job is to fill the beds. At the LTAC, which was one of the best in the country, they’re very highly recommended, she was doing the swallow test where they give them the blue ice chips to see if she dribbles or anything, and she was actually keeping the ice chips in her mouth and she was able to digest without drooling or losing any of the ice chips. So, she was very, very close, very, very close.
Patrik: Debra, how long did it take from your mom going into the skilled nursing facility and then ending up in ICU? Less than 48 hours from memory, is that correct?
Debra: It was 16 hours.
Patrik: 16 hours. My goodness.
Debra: She never saw a physician. She never saw a nurse. She never received any medication. That’s how long it took my sister and I, because of the weather, to drive up to the skilled nursing facility. It was obvious when we got there that she was sick, and within an hour of our arrival, they called an ambulance.
Patrik: Obviously now, she is in an ICU that’s probably also two hours away from you.
Debra: Correct. It is.
Patrik: It is sheer and pure madness, what’s happened here in terms of how patients are being dealt with. I think it’s no exaggeration to say that the system is completely broken.
Debra: It’s absolutely broken. So, I’ve been sleeping in her intensive care room, in her room for a week because I don’t want to leave her alone. I don’t want to say I don’t trust her medical team, but they have in her notes that I’m considering hospice, and I am not. I said palliative care, they documented hospice, and I will have them correct that medical record because I have not given up.
My mother, she has disorder of consciousness, but she recognizes us. She shakes her head, yes or no. One doctor calls them seizures. Another doctor says it’s not seizures because it doesn’t last 10 seconds. It’s very confusing, but I haven’t given up on my mom, and I need them to understand that. I’m afraid to leave because without her having me to advocate for her, I don’t have any confidence that they would do everything that they can for her.
Patrik: Yeah, yeah. No, it’s unbelievable what has happened here. Again, what I’ve been saying for many years, your mom now has been in four different places since April?
Debra: Correct. Correct.
Patrik: A critically ill patient needs consistency and not being moved from place to place to place. A critically ill patient needs a team around them that provides consistency, stability, that gets to know the patient and their family so that they can move a patient to a better place. If anything happened here while she was making progress in the LTAC, now it’s gone in the complete opposite direction.
Suggested articles:
Debra: Right. So, the physician, because they asked me, they said, “What would look like a success to you?” I said, “If she were to get back to where she was on July 3rd before she was dumped at the skilled nursing facility, that would appear to be a success for me.” They’re not very optimistic since the epileptic seizures that she can get back to July 3rd, and that breaks my heart, that breaks my heart.
Patrik: Debra, are you considering taking any steps with the LTAC that really went behind your back and put her in this predicament in the first place?
Debra: Yes. I’ve contacted an attorney and I’ve contacted Medicare to file a quality-of-care complaint against them. What I’d like to note is that your nurse that monitors my mother’s records specifically called out that one of the nurses documented a foul odor and a discharge from the site of her feeding tube. That nurse indicated that she advised and showed the physician. So, when I get the morning emails from your team, they called my attention to it. I copied it and I pasted it into a text directly to the doctor. He did not address it in any way. He completely ignored it. I said, “I need you to specifically address the foul odor and the discharge from the site of the feeding tube.” He completely ignored it and signed discharge papers for her. A week later, she was septic, and your team called it out, but I couldn’t get the doctor to respond. I don’t know what to do when they don’t answer.
Patrik: Yeah. Look, one way, correct me if I’m wrong there, Debra, I can’t remember, were you in a position to visit your mom daily while she was in the LTAC?
Debra: No, it was also two hours away.
Patrik: Oh, I didn’t realize that. That was also two hours.
Debra: Yes.
Patrik: I don’t understand it, and I see it across the United States. It’s not unique to Missouri. I see it in other states as well, that when patients or when hospitals want to send out patients to LTACs or skilled nursing facilities, I see it all the time, two hours away from home, four hours away from home, sometimes in a different state. It is just beggars’ belief to me that the system is not set up to have patients close to their families. I don’t understand.
Debra: It was very hard. I’ve cleaned out my savings because she’s been away from home so long. When I did come, it would be three or four days in a row that I was able to stay with her, but then I’d have to go home because I have my own family and I have a job, and I’ve depleted my savings. I ran up all of my credit cards trying to be close to her. So, at this point, all I want to do is get her home. The reason they said to send her to the skilled nursing facility was so that she could receive therapy, and I began to think, so she would get an hour of therapy a day, but then what would she do the rest of the time in the skilled nursing facility? She would be one of 54 patients who may or may not get turned, who may or may not receive her medication. If the only service that she’s there for is an hour of therapy, why couldn’t you do that in the home? You could do those exercises in the home.
Patrik: 100%. 100%. There’s not much that can’t be done at home in a situation like that, especially leading up to your mom’s last ICU admission. I guess at the moment, she’s in a critical condition, but once she comes out of that critical condition and they have the seizures under control, there’s no reason why your mom can’t go home as far as I can see, knowing what I know about your mom.
Debra: Yes, and I agree, and I’ve made that very clear. The recommendation now is to send her to another LTAC, which is in the same City of St. Louis, which is still two hours away, and I want her to come home. So, they’re weaning her. She’s on a trial now. It’s been two hours off of the ventilator, and if we can get her weaned off of the ventilator and conscious enough to start working on the tracheostomy, my goal is to bring my mother home.
Patrik: Yeah. Look, Debra, I really appreciate you sharing in so much detail and so vividly what you and your family have been through, and your mom, of course has been through. We won’t be able to change the system overnight. We won’t be able to change the system just by recording one podcast. However, we can only get the word out there and hopefully highlight to our audience here, again, especially in the U.S., to not give consent to LTAC or skilled nursing facilities to make the appeals to Medicare or to any other insurance, depending on which insurance you’re dealing with. There is often a pathway to avoid it, but in this situation, the LTAC was absolutely unscrupulous, really, and it really beggars’ belief that people seem to have no morals, no ethics, no conscience, and just go behind people’s backs when families and patients are at their most vulnerable.
Debra: I agree, and I want to thank you and your services. What your team has done for me has been invaluable. I’ve shared your YouTube page with at least three families that I’ve gotten to know at this particular emergency room. If you have questions and you don’t know what to do, there was a 46-year-old male who they wanted to intubate with what they want to do, a tracheostomy and a PEG (Percutaneous Endoscopic Gastrostomy), and I said, “Watch this video before you agree to it.”
Patrik: Right.
Debra: She took your advice. She did not agree to it, and he’s still in ICU and he’s doing better, and that’s because of you. That’s because of you and your service, so thank you.
Patrik: Thank you. Thank you, Debra, for sharing this, once again, with our audience, with our listeners, with our viewers. Again, this is particularly important to our audience in the U.S. because LTACs are also unique to the U.S. They don’t really exist in other countries, in other English-speaking countries. So, I can’t stress enough, don’t go to LTAC, don’t go to a skilled nursing facility. Stay in ICU for as long as you can and wait for time to work in favor of your loved one. That is often what is needed, time and patience, and a nurturing environment. From my extensive experience, ICUs are better at that than any LTAC or skilled nursing facilities. Not that ICUs are perfect by any means, but it is a safer environment.
Debra, in the interest of time, I do want to wrap this up here.
Recommended:
Debra: Okay.
Patrik: Are there any final thoughts? Any final words?
Debra: No, no. I’ll be reaching out to your team to get more information about Intensive Care at Home and what options I have to take my mother home.
Patrik: We can have that discussion. Yeah, anytime. Anytime. Okay.
Debra: Thank you so much.
Patrik: Well, thank you. Thank you so much for watching. If you want to check out intensivecarehotline.com, where we provide consulting and advocacy for families in intensive care, we have a membership there and you can become a member and we can help you in the membership, if you go to intensivecarehotline.com, if you click on the membership link.
I also provide one-on-one consulting over the phone, Skype, Zoom, WhatsApp, whichever medium works best for you. I talk to doctors and nurses directly on your behalf, if you want me to do that. We also do medical record reviews in real time. We also do medical record reviews after intensive care.
If you like my video, subscribe to my YouTube channel, click the like button, click the notification bell, share the video with your friends and families, and comment below what questions and insights you have from this video.
Thank you so much for watching.
This is Patrik Hutzel from intensivecarehotline.com. You can contact us at intensivecarehotline.com on one of the numbers on the top of our website or send us an email to [email protected]. Also, check out intensivecareathome.com for Intensive Care at Home services.
Thanks again and take care to of all of you.
Bye-bye.
Related Articles:
Quick Tip for Families in Intensive Care: How to Avoid LTAC or Subacute!
Quick Tip for Families in Intensive Care: 3 signs that ICU is Preparing your Loved One for LTAC!
Quick Tip for Families in Intensive Care: Testimonial from a Client, Why Not Giving Consent to a PEG (Percutaneous Endoscopic Gastrostomy) Tube Saved Her 83-Year-Old Dad’s Life!
Quick Tip for Families in Intensive Care: Another Testimonial from a Very Happy Client! Thank You for Helping My Mom to Get Out of ICU Alive!
Quick Tip for Families in Intensive Care: Mom’s in ICU with Septic Shock & Poor Prognosis, Is There an Ulterior Motive to Push Her Out of ICU?