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 was
My Dad is in Cardiac ICU After Three Open-Heart Surgeries. What are the Right Questions to Ask the ICU Team to Know About My Dad’s Quality of Life?
You can check out last week’s question by clicking on the link here.
In this episode of “YOUR QUESTIONS ANSWERED” I want to answer a question from one of my clients Jenny, as part of my 1:1 consulting and advocacy service! Jenny’s mom died in ICU and Jenny
is asking why has the ICU team denied her mom of care and life-sustaining treatment.
Podcast: My Mom Died in ICU. Why has the ICU Team Denied my Mom of Care and Life-Sustaining Treatment?
Patrik: Hello and welcome to the intensivecarehotline.com podcast. Intensivecarehotline.com helps families of critically ill patients in intensive care to instantly improve their lives so that they have peace of mind, more control, more power, and more influence and so that they can make informed decisions.
I’m your host, Patrik Hutzel, founder, and editor of intensivecarehotline.com and as part of our podcasts and interview series today, I’ve got a very special guest with me. Welcome, Jenny. Hi, Jenny. How are you?
Jenny: Hi, how are you?
Patrik: Very well, thank you.
Jenny, thank you so much for coming on to this podcast. Jenny, you and I have started working together mid last year. You’ve come to us when you had your mother in intensive care. When I found out about what was happening in intensive care, I was very shocked. Even though I’ve worked in the intensive care for over 20 years and I’ve consulted hundreds of people here in my consulting service, your mom’s situation was unprecedented and I was really shocked to see
what was happening at the time, but I don’t want to keep our listeners too long because I really want you to share this story. What happened with your mother at the time?
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Jenny: Yeah. My mother was 76, actually, she had just turned 76 and she was at one hospital that had put her on a tracheostomy and a ventilator. It turned out she didn’t need a ventilator. I was her power of attorney, the long-term rehab sent her to a hospital without my consent, and she was a dialysis patient, three times a week. She was not given any dialysis. She was not fed and I was basically, they forbid me from
seeing her and when I reached the hospital, she was also not really conscious. She was like a vegetable. I wasn’t given an explanation why she had come to the hospital or why she wasn’t responsive. She was also given fentanyl. She had taken painkillers before but never fentanyl. And when I finally could see my mother, I had discovered that for three
weeks they had not been feeding her. And also they said that she had a Cerebrovascular accident but the cause of death turned out to be different than what they said. And she died on September 6, 2019
Patrik: Yeah, and the circumstances at the time were very dramatic in terms of, from what I remember, you got locked out of the hospital. You couldn’t even spend time with your mom in her last few days.
Jenny: They actually locked her out of all visitors, they didn’t let her have any visitors.
Patrik: And how did you feel about that?
Jenny: Well, they claim that she said that she didn’t want visitors, but when I first saw her, she wasn’t even conscious, so I don’t even think that’s a decision she could have made and she would never make that type of decision.
Patrik: Yep. And can you share with our listeners what led to the “lockout”, and what led to this and potentially how other families can prevent that from happening?
Jenny: Well, what led to it I think is that I had shown up at the hospital and I was demanding care for my mother. She had left from the hospital, she did that, it was Monday, Wednesday, Friday, and I was told that the rehab would give her dialysis and they didn’t. And she went without dialysis for almost a week. And it was when I demanded that they give her dialysis, they didn’t even have her on the dialysis schedule, I obviously got upset. I
demanded a nephrologist and that’s what pretty much led to the lockout. They didn’t want me to see my mother. They said first a 24-hour ban and then they just kept making excuses to not let me see my mom. So at that point, I had no idea what was going on.
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Patrik: Yep. And from what I remember as well, Jenny, there was definitely some misdiagnosis because as you said, they were saying that your mother had a stroke, but that was never confirmed. The other thing that I remember is in the last days of your mommy turned out she had a gastrointestinal bleed. Do you remember that?
Jenny: Yes.
Patrik: They claim. She hasn’t had any nutrition for two weeks as you said, and she was never offered TPN, total parenteral nutrition. So she was never-
Jenny: You were in the meeting where you asked them about TPN on the phone. They wouldn’t give her the TPN.
Patrik: That’s right. So you could claim that she really was starved to death. I mean that’s almost unheard of that somebody hasn’t had the nutrition.
Jenny: I don’t want to be too graphic but if I describe the remaining days of her life, the day before she died, when they finally let me see my mom under very tight restrictions and I had not been violent, I didn’t have a weapon. I was just advocating for my mom. She was, her neck was bleeding and her eyes were rolled back into her head. And before, in the rehab, she was saturating at like 100. Her ventilator was set to 44 and she was literally
gasping for air and they weren’t feeding her. And I don’t want to get too graphic, but she basically looked like a Holocaust victim. She had no nutrition at all. I have the image you saw.
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Patrik: Right, right. And the other thing that I have in my notes here from that time, Jenny, is she had a DNR that you or your mom never consented to.
Jenny: No, I never consented to the DNR.
Patrik: Which is again illegal. A hospital has to have consent either from a patient or from medical power of attorney before they-
Jenny: I was deemed her power of attorney, I was her proxy, her power of attorney and the doctor came in and she said, “I put a DNR for medical futility.” And when I argued with her, I was escorted again out of the hospital.
Patrik: You were never given the option to challenge anything that you could have challenged under normal circumstances if you had been part of a normal hospital interaction, which is you can visit your loved one. That’s a normal hospital interaction.
Jenny: Here’s the thing, I didn’t have any part between the rehab sending her to the hospital and her time in the hospital. I was not briefed about her condition. I was not allowed to make any decisions. I couldn’t see her. I did not know her diagnosis. I mean when I arrived at the hospital, she was lying on a metal table. Her eyes were staring out into space. She was brain dead.
Patrik: Right, right. And I remember also, you weren’t allowed to have access to the medical records, which again is illegal because, under the freedom of information act in any country and in any state around the world, you have the right to have access to the medical records.
Jenny: They finally gave me the access to the medical records where I found out that they were trying to get guardianship of her, but I only found it out, they wouldn’t initially give me the medical records. They gave me half of them and then they finally sent me the rest of them, which the remainder of the medical records had a lot of inaccuracy.
Patrik: But at that crucial time, I remember that at the crucial time of when you were wondering why is she in ICU and you were told she had a stroke, but that turned out not to be the case. As far as I remember, you didn’t have access to the medical records.
Jenny: No, I didn’t have access to the medical records at that time, no.
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Patrik: At that time-
Jenny: I had no idea why. Basically from the rehab to the hospital, that initial time, that crucial time, I had no idea what was going on with my mother. I had no idea. The hospital didn’t even call me that my mother was there.
Patrik: Yep, yep. Yeah, I remember that and when we started working together then it was an absolutely traumatic time for you. It was unprecedented for me also that the hospital can be so cruel and lock a daughter out of the ICU to see their mother who was dying at the time. That is almost unheard of, whilst in retrospect also trying to take your guardianship away from her whilst she was trying to advocate for her. That’s unheard of. What would
be your message today, number one to other families but also to the hospital maybe? What would be your message with this traumatic experience?
Jenny: Well, we had once discussed that the hospitals are there to treat and they’re not there to decide what quality of life is worth treating and saving. The minute that someone comes into the hospital, as you said, they have a duty of care for the patient and as you know, do they have a duty of care and they also have to keep in mind that these are people’s families or people’s loved ones. This is my mother. To them, they don’t know who she
is, but no matter what shape she was in, and she was very sick. She was very sick and she had a lot of co-morbidities, but she was still my mother. They’re still people. They’re someone’s family member, they’re someone’s loved one and the loved ones should be able to keep in contact and know what’s going on so they can make the right decisions for their loved one and the decisions that they want to make.
Patrik: Yep.
Jenny: And also follow the decisions of what their loved one told them if they made them the proxy.
Patrik: Yeah, yeah very much so. And in this situation, it was, as I said unheard of, somebody being locked out. It had to feel to me at the time you were locked out so that your mother was, that it was easier for the hospital to deny your mother treatment so that nobody could challenge them, basically killing your mother. It sounds horrible. For somebody listening to this, they might think we’re making this up. Well, I can assure you-
Jenny: That’s the very thing. And you know what else? I remember when I had spoken to you and at one point they would only allow me to call and they would only give me one update per shift and you had given me a list of clinical questions to ask them. And they have obviously been making all of that up, which is crazy because you gave me all those questions to ask and I would call and they said you’re only allowed to call once per shift to your
mother. And the reason I called a lot is that they wouldn’t let me see her.
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Patrik: Yep. Yep. And as I said, there was so many, what’s the word, what’s the right word? It was just an awful situation. And you were denied, literally, you were denied and your mom was denied basic human rights. In a free country, you were denied basic human rights. Your mother was denied basic human rights. She was denied healthcare to save her life. And if I hadn’t seen it with my own eyes, if I hadn’t heard it, I would say the hospital
really killed or even murdered your mother.
Jenny: Yes. But it’s hard for people to believe because we want to think of these hospitals as healing places and a lot of times they are. But I spent every day of three weeks, I mean I tried too also, I was denied my wishes that I wanted to transfer. I was trying to transfer my mother out and I was speaking to transfer centers and they would tell me that the transfer center denied my mother when they never did.
Patrik: Right, right. Yep, yep, yep. So it was really an unprecedented situation where you and your mother’s wishes had been ignored, starting from you being locked out, going all the way to denying dialysis. Basically, the DNR was imposed. It turned out in the end that there was no official
or the diagnosis wasn’t really communicated to you properly because, in the end, it turned out it was something entirely different.
Jenny: Yes. Because I had to have my own private autopsy.
Patrik: And it turned out that after you had the autopsy results, that what the hospital was telling you why your mother was in ICU was something completely different compared to the autopsy results.
Jenny: Yeah.
Patrik: So again, it made you wonder, made us wonder what did the hospital have to hide?
Jenny: Yeah. And what was their motivation? What was their motivation to do something like that?
Patrik: That’s right, and one thing that I always say is, and people, unless they work with us on a one to one level, they often don’t believe me. But the reality is ICUs are overcrowded. ICUs don’t have enough beds. They don’t have enough staff. One way to unfortunately manage beds is to deny some patients treatment and let them die. And I believe with the situation that we were encountering at the time, I do believe that is exactly what
happened. Your mother was denied treatment. You were denied access so that the hospital could basically run their agenda.
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Jenny: Yeah, I was in the way.
Patrik: Treated, but it turned out the hospital had to have their own way to manage their agenda and that cost a life.
Jenny: Yes. And also the other hospital, it turned out that my mother died of a septic embolism of encephalitis and there were bacteria that went to her brain and they were not giving her antibiotics. So I think it started in the other hospital because they weren’t giving her the
appropriate course of antibiotics that she needed.
Patrik: Right. And do you remember in the other hospital, was there a DNR in place as well?
Jenny: No, but they had, in the other hospital, they had tried to do an amputation and they had also said that “Oh, she probably wouldn’t make it.”
Patrik: Which is what hospitals say always. And now I have to put that in here for our listeners. You always hear the doom and gloom from hospitals.
Jenny: Because of her age and multiple conditions, things like that. And it’s just very, I think I want other families to know that you always have to question that you can’t just leave your loved one in a hospital and think that they’re being taken care of and everything is okay. You have to check on your loved one, you have to talk to the doctor. You can’t just take everything the doctor says to heart. You have a responsibility too to your
loved one.
Patrik: Yeah, definitely. That’s what I always say, the biggest challenge for families in intensive care is that they don’t know what they don’t know. And they often don’t even know what questions to ask. And once you know what questions to ask and once you know what to look for, the dynamics change because then the ICU knows, “Oh, you’re actually talking to someone that understands intensive care and that is really important.”
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Jenny: In the first hospital, they didn’t amputate her leg. I mean I was asking questions, but when she reached the final hospital, they were locking me out. So at that point, they wanted to prevent me from knowing anything. And as you said, I couldn’t make the decision whether to decide what of her life. I was powerless because I didn’t know what was going on. I was left in the dark about her diagnosis, about why she was taken to the hospital,
her prognosis. I literally couldn’t make any decision.
Patrik: Yep. Yep. And even worse, and I think that’s where the human aspect is really coming in. You weren’t being at your mother’s bedside in her last few days, I mean that must’ve been absolutely devastating.
Jenny: Actually, they would give me certain times where I could come. And when I called them, they said, where are you? They said your mother had just passed. They didn’t even call me that my mother passed. I called them.
Patrik: Appalling. Absolutely appalling. Normally, ICUs have an inclination to know if somebody is approaching their end of life and most ICUs that I worked in at least, they would give a medical power of attorney or a relative a courtesy call and ask them to come in if they wanted to spend time with their loved one.
Jenny: The thing is I’m really her only daughter. So by default, even though I have the papers, I’m her only daughter so I had the right to know what was going on with my mother.
Patrik: For sure.
Jenny: So I would urge families, I would urge families to just when their loved one is in the ICU or in the hospital to really not just think that they’re just getting care and just leave. You really have to be proactive and you really have to be your own loved one’s advocate when they’re in the hospital because if you don’t do it, nobody is.
Patrik: Nobody is. Yeah, for sure. Hospitals always claim and ICUs always claim that they know what’s “in the best interest for a patient.” But that can’t be in the best interest of a patient as long as not everything has been tried. In your mother’s situation, not everything had been tried. She was denied dialysis, she was denied nutrition. If that had been given a shot if she had that treatment and it wouldn’t have succeeded a different story.
But you didn’t even have the opportunity to have that treatment in the first place.
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Jenny: Right, she was denied care.
Patrik: She was denied care and treatment, life-sustaining treatment.
Jenny: Yeah.
Patrik: And you were denied information and you were denied to be at your mother’s bedside.
Jenny: Yeah. I wasn’t at her bedside when she passed.
Patrik: Yeah. And why would an intensive care unit withhold medical information? They only usually do that if they have things to hide. It is a duty of them to be open and transparent, which wasn’t the case in your mother’s situation, which is a big, big red flag if ICUs aren’t transparent.
Jenny: And also they said that she had this big gastric bleed but the autopsy didn’t say that she had a perforation and they could have given her TPN. They just denied they didn’t give her anything.
Patrik: Yep. Yep. So you could almost argue your mother was, part of it was she was starved to death. That was part of it. I mean if somebody is critically ill, they have low energy. If they’re not getting nutrition, it’s only getting worse. And this is what’s happened in your mother’s situation.
Jenny: I’m glad that she was not conscious because she loved to eat. So I mean that at least, she wasn’t aware she was being starved to death. But I couldn’t even believe it because I knew that even if they were bad and I wasn’t there, I was expecting that they were giving her the basics. Do you know what I’m saying? You would think that they were feeding her at least like they were giving her nutrition because that would be like one of the basic
things that a hospital would give.
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Patrik: Look, I mean withholding food really is cruel. I mean that’s denying. Again, it comes back to denying people a basic human right. Jenny, we were briefly talking about this before this interview. At the time of this recording, it’s March 2020, the world is in a significant health crisis with the coronavirus. Jenny, what do you think might be happening with the coronavirus and patients in ICU and we have already seen some of it. I’m playing
devil’s advocate here, but we have already seen some of it in Italy now and in Spain, but what do you think might happen where you are and where I am if the coronavirus spreads even further?
Jenny: Well, the hospitals are working on limited resources and they have to kind of pick and choose who they give those resources to and unfortunately even in Italy, I think they stopped giving ventilators to people over 60 and I think that’s going to hit the U.S.
Eventually. I think the ICUs are very overwhelmed with patients because of how fast this coronavirus is spreading. And I’m very concerned about the elderly population because the hospital simply, they do not have the resources. They were not prepared and maybe they don’t have enough ventilators and they have to kind of choose. So I fear that the U.S. could be like Italy in that way.
Patrik: Yep. Yep. Look, and again, I’ve been saying this for many years that ICUs are already choosing, not as overtly as they do in Italy now. I mean it has gone public that the doctors are choosing in Italy. I believe from my experience it’s been happening for many, many years. ICUs have to manage limited resources. They just don’t do it as overtly as they do now in Italy. But ICUs are constantly making decisions about who’s going to live and
who’s going to die. Now this would be-
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Jenny: We’re seeing it more since this virus.
Patrik: Exactly. That’s exactly right. And if this pandemic situation gets out of hand as it did in Italy or in Spain or in China, we will see the same where you are. And we will see the same here where I am that when ICUs get overflowing, that does have to make very tough decisions and they’re not good decisions to be made. But that’s potentially the way it’s heading. And if you as a family member don’t ask the right questions, you can’t
advocate for your loved one. You really need to understand intensive care inside out to understand what the decisions are based on.
Jenny: So about the resources, you have scarcity, there’s only so much that have, there’s only so much the hospital gives them too, so I mean it’s a very scary situation, especially for the elderly population and the immunocompromised and the sick because they have to make very tough decisions.
Patrik: Very tough decisions, yeah. As I said, and I’ve said it for many years, this is already happening. And now with a health crisis, already happening. This is only going to be exacerbated. My other concern is everybody’s talking about buying more ventilators and that could be one solution to the problem, but the reality is somebody needs to operate those ventilators and that takes often many years of theoretical and practical training. You
don’t become an intensive care doctor or an intensive care nurse overnight. So yes, it’s good to buy ventilators, but if you don’t have the skilled staff that can operate those ventilators, it’s almost like a futile exercise. You can’t just train somebody to operate a ventilator overnight. It’s not a two hour course. It takes years of training. So that is another one of my concerns, who’s going to operate and look after all these ventilated patients potentially.
Jenny: It’s a very scary situation.
Patrik: Very scary situation. And as we can already see in Italy, patients are dying by the minute already and we can only hope that-
Jenny: The U.S. is going to be next. The U.S. is hurtling towards that example.
Patrik: Yeah, where people are almost dying by the minute. It’s a very bleak outlook. It’s a very bleak outlook.
Jenny: These hospitals forget, I feel like the hospitals see people as numbers and also like with my mother, I was very, very close to her. I mean we were all each other had and the hospitals are not really seeing these people as humans. They’re just seeing their numbers, their money, their dollar signs and it’s a really sad and scary situation where they’re essentially deeming whose life is worth it and whose is not. You know what I’m
saying?
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Patrik: Yep. Yep. It’s scary times. And if families are not prepared for, and here is another thing that’s happening, Jenny at the moment. Because of the coronavirus, I have been talking to clients in the last few days. They have loved ones in ICU. Now they don’t have the coronavirus. However, they are locked out of the ICU because of the coronavirus. Hospitals are locking families out because they’re scared that families bring in the
coronavirus. So they’re using it almost as an excuse to lock people out, which is what’s happened to you, which is another scary part of this situation.
Jenny: As someone posted, I saw that there was someone older and they were in the hospital here and they didn’t know where they were and they hadn’t heard anything about where their family member was.
Patrik: Right. It’s scary times. And I believe it’s the same in Italy from what I hear, that family is locked out of ICUs because of the virus and that loved ones are dying without families being present.
Jenny: Yeah. With my mother, I wasn’t able to be present. I wasn’t able to be there with her. And the whole time it was going on, I mean, I’m still very traumatized by it, but of course, I wasn’t even ready to discuss it for so long. You remember, it was very, very hard for me.
Patrik: Yeah. But I’m glad, I’m really grateful that you are taking the time to talk to us about it because I think people need to know that it’s happening. It is, up until last year, I have not come across that people are locked out. Hopefully up to this point, it was an isolated case. It’s still a very poor example from a hospital point of view. Now, especially now again with the coronavirus, it seems to be more commonplace than people get
locked out and given that people die in droves literally with the coronavirus, if families are not around, it’s even easier for hospitals to-
Jenny: Exactly. And that’s why I want to tell families that or even in a nursing home, a hospital, doesn’t matter, if you think that you’re just having your loved one there and they’re going to get this great care and you don’t have to worry, that’s not true. I mean you have to be as integral in their care as the hospital or the place is. You have to be involved.
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Patrik: Yeah, we just, what I always think-
Jenny: You have to actually be an advocate.
Patrik: Definitely you have to be involved. You have to advocate because again, ICUs don’t always do what’s in the best interest of a patient or a family for a number of reasons. And I have written about this extensively what those reasons are. They include financial, they include staff resources, they include break management and they also include things like some doctors and nurses as well. They do believe that they are the only ones who know
what’s best for a patient and that’s simply not wrong. And that’s the issue with them seeing patients as numbers and not as human beings with life, with interests, with families.
Jenny: And when the family member is not around.
Patrik: Jenny, you’re dropping out. You’re dropping out, Jenny.
Jenny: Sorry. When the family member’s not around, they didn’t even have any doubts. So they don’t have any worries about doing it.
Patrik: Yeah. Yeah. Jenny, we’re coming to sort of the 30-minute mark here and I know, sort of being conscious of the time, hopefully, we can continue this conversation in another interview. But thank you for sharing what’s been a very traumatic and difficult time for you. I really appreciate that you are willing to share with our listeners what you’ve been through and so that other families don’t have to go through the same. It’s been a very
traumatic experience. So again, I can’t thank you enough to come on and share this.
Jenny: But I think it’s also, I think it’s also important, my story is also important because it’s relevant, so to go through something traumatic and hopefully other families can avoid this or they can know what’s going on in these ICUs. They can know that they have to keep track of their loved one, they have to keep on top of it, especially through such a crisis. The hospitals are overwhelmed. If you don’t keep track of your loved one, the
hospital is not going to do it for you. So it’s important to know that.
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Patrik: Yeah. And your experience with being locked out might now again, unfortunately, become commonplace because hospitals would be worried that people bring in the coronavirus from the street or on the other end, if they do have patients in ICU that have the coronavirus, they might say, “Well we got to keep you out of ICU.”
Jenny: Well it makes sense that we have to keep you out because you might have it and you might spread it more. So that’s even more of a reason for them to keep families out and they’re in the dark about what’s going on.
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Patrik: Yep. Very, very challenging times. If you need help with any of these as our listeners, you can always contact us at intensivecarehotline.com. Jenny, I really want to thank you once again and hopefully, we can continue the conversation in another interview because I know you’ve got lots of wisdom to share here, unfortunately, that our listeners will benefit from. So thanks again for coming on to this
interview.
Jenny: You’re welcome.
Patrik: Okay. Thank you. Thank you. We’ll talk soon. Now, if you have a loved one in intensive care, check out intensivecarehotline.com. Give us a call on one of the numbers on the top of the website if you need help or send us an email to support@intensivecarehotline.com. Thanks again for listening to this podcast and I’ll talk to you soon. Thank you.
Kind Regards
