Listen to this interview with host Patrik Hutzel and the Founder of “Family Centered Intensive Care” Lorette Gijsbers on MP3 here
The interview highlights the importance of a more Family centered approach in Intensive Care and also highlights the international cooperation of Intensive Care health professionals together with Families to improve the lives of Families of critically ill Patients in Intensive Care!
Sincerely, your Friend
Please find the interview transcript below:
Patrik: Hello and welcome to INTENSIVECAREHOTLINE.COM, where we help Families of critically ill Patients in Intensive Care to instantly improve the lives of Families so that they have more control and more influence!
I’m your host Patrik Hutzel, founder and editor of INTENSIVECAREHOTLINE.COM and today I’ve got a special guest Lorette Gijsbers, an Intensive Care Nurse from the Netherlands. Hello Lorette and thank you for being a guest on the show, how are you today?
Lorette: Hello Patrik, I’m fine. It’s now here 9 O’clock in the morning and you are in the evening, so we both together are going into the night shift, for me I have to take the whole day for free and you’re going very fast I think!
Patrik: I’m sure your day will go very fast!
Lorette, we obviously have made contact via Linkedin and you have actually founded a group that is called “Family Intensive Care” or “Family Centered Intensive Care” and obviously you’ve come with a wealth of Intensive Care nursing experience, you’ve got about 15 years of Intensive Care nursing experience, is that correct?
Lorette: Yeah that’s correct, you saw that very good!
Patrik: And Lorette what inspired you to start the project “Family Centered Intensive Care”, what was your main motivation behind it?
Lorette: Yes, my main motivation was that I’ve experienced and also learned from research and also literature that Families are often overwhelmed by the experience of having a loved one critically ill in the ICU and therefore they’re often most paralysed by fear and they place themselves in the background, but it can very traumatic for them too. So they’re afraid to ask because all the attention goes to the Patient and that’s what I’ve learned and I saw in Intensive Care and I saw that it has to become better, so I’ve worked out a project for two years together with the high school in Nijmegen and three hospitals, to improve the Family satisfaction in the ICU and three Hospital in the Netherlands.
We worked together with Lisbette Ver Harden, she did a promotion research on the psychosocial impact and support for relatives of trauma Patients and we also met Elaine Lukma and she is an ex-Patient and a nurse and she let us look from the other side. So that was great to work with all those people together and in those two years we set up tools and we have spoken on symposiums to get other professionals involved in this matter and we went as a group to Peter Gibb, he is an ex- Patient in Milton Keynes and also has a website, just like you Patrik and we saw how he and Mo, who is an Intensive Care Nurse set up support groups and that is something I want to do in the future, after this project has ended! And together with this group we made a Quality index to measure Family satisfaction and it’s now at the stage where more hospitals use this and it will be a standard to do in the future, in the Dutch ICU’s !
And so now this project has ended and I thought there must be a way to get in touch with more professionals in the field and field experts to work this out together and there are many initiatives in the Netherlands, but there must be a better way to work together and to get stronger from this point and to know what’s happening in the field and my motivation is strong national and international partnerships on Family centred Intensive Care to exchange the information and get inspired together and mostly keep motivated and compassionate!
And also to get in touch with field experts, to what I think is very important in the future, Patients and Family members can tell their stories and we can learn a lot from them as professionals and we have to get them introduced to work together with us!
And that’s what I think is a lot for this, what inspired me and motivates me the most and I think Patrik that we are there on one line in what we think is necessary for the future!
Patrik: Absolutely Lorette and I think you’ve made a few very valuable points there, because you know you’ve highlighted that Patients are paralysed, ah not Patients, families are paralysed because the focus is obviously in Intensive Care to, you know, provide care to a Patient but, you know, and I’m not saying we overlook the Families but, you know, how do they cope with their situation, you know and there is as you’ve highlighted, there is a lot of room for improvement and we as clinicians we are often focused on, you know, giving the best clinical care to a Patient, which is very important, but I’m a big believer that once the clinical, the clinical things are under control, 50% of our work is managing the Families.
Lorette: Yeah, absolutely
And I think we manage the Families very very good in our hospitals, my colleagues very good, but what’s important is that there is continuity in our care and structure and
Lorette: And explaining that, because when I go in my shift and I ask a husband or so “how did you sleep and how do you cope with all those things that you’re now experiencing” and he said to me and I reported in my report and I go home and after three days the report is gone and my colleague asks him “so how do you sleep and how do you manage?” and therefore there has to be or to become a structured plan so that my colleagues know, oh you’ve asked that and you know the needs of this man and you can go as a team, you can do better care when you know what’s happening for him!
You can read it and you can, in your shift, after that you can know, oh it’s going like that with him and you can go deeper on his case or you can help him better I think!
Patrik: Absolutely! I think you’re making a very valuable point there Lorette, because I have never thought about this actually, but just while you’re saying that, you know, obviously every Intensive Care Unit has clinical standards and, you know, you’re bringing up a very valuable point! Why not having standards, documents that, you know, that bring up the management, the best practice of managing a Family, a husband, a father, a mother, you know, whatever, a daughter, a son, you know, whatever, whoever the relationship maybe between Patient and next of kin. You know, I think you’re bringing up a very valuable point there, maybe standardising, you know, the approach, would be, would be fantastic!
Lorette: Yeah! That’s, Patrik what we, what we did in our ICU, we did that and the continuity and what we, what we’ve planned and what we schooled or we, how do we say?
Patrik: You’ve educated?
Lorette: My colleagues and the Intensivist, we did learning, we did teach them with an actor
Lorette: What coping factors are for people and we introduced, after three days, after hospitalisation of the Patient that we’d talk with the relatives, we talk as nurses with the relatives and we ask them what their needs are and how the hospitalisation was for them, how was that first night, how was that?
Lorette: When they came into the ICU what are the emotions that they get? And what’s very special on this talk is that my vision, it has to be, not near the Patient but in a room somewhere else that they can explain their emotions and it doesn’t take so long because my colleagues were very afraid and they said “oh I have to go to another room and why is it so big” and that and that and they can do it by the bed and I explained “no it’s better when you go to a quiet room”, and it’s not so difficult because you can say to the husband “no, I see it’s very lot what’s coming to you and I go with you to a special room just to sit for few minutes with you, so how it is with you and how can I help you?” And that’s the only question and people say a lot of things in those few minutes and they get a bond with you and that is so very special. But it’s also very very difficult to implement on my ICU, because people are a little bit afraid. My colleagues are a little bit afraid to take them away and it doesn’t take so long and it doesn’t have to sit there for an hour, you have to sit for 10 minutes and people, you get a bond, that is so special!
Patrik: Absolutely, absolutely! I think what you’re saying there Lorette that is fantastic, because it sounds to me like, you know, your hospital or your Intensive Care Unit is taking some measurable steps to really, you know, make a more family centred approach in Intensive Care, because, you often, ICU’s don’t have the resources to make that time, you know, to take a family member aside and say “let’s sit down and let’s talk, but let’s get outside of ICU, let’s get away from the busy bedside you know and I think that is absolutely fantastic what you’re doing there, because again, as I mentioned before, we as clinicians, we are often focused on what’s happening at the bedside. And I’m not saying we’re forgetting the relatives but…
Lorette: No, no, the first thing that’s most important of course is the Patient
Patrik: Yes, absolutely but once the clinical things are under control, you know, it’s so important to make sure that we talk to the relatives and make sure we don’t forget them, you know, and really dig down into their emotions and how we can help them to manage their emotions!
Patrik: And you know that sort of leads me to the next question, you know, I mean it sound like within your organisation, you’re already having a mission and a vision, but with “Family centered Intensive Care”, what exactly is the Mission and the Vision of the group that you set out to achieve in the future?
Lorette: Yeah, our mission is to improve “Family centered Intensive Care” at our ICU but also after that in the general ward as a recommendation and then support when people get home and therefore partnership between hospitals and revalidation centres, the Family doctor at home, Patients and the relatives is important to improve! Also the knowledge of the consequences of an ICU stay, it has to be better known among nursing and medical students, because it’s so very special! And “Family centred Intensive Care” is the responsibility, I think, for the hospital, family satisfaction has to become very important in the vision of Hospitals in the future and also in the society I think, it can be when you do it not like… people can get like post traumatic stress disorder and Patients can have that and also Family members can have that and when you have an ICU where professionals know about it, they can catch the people, so how do I say it, they can…
Patrik : Make a connection! Make a connection!
Lorette: Yeah, they make a connection and so it doesn’t have to get that big for the Patient and the relatives and you do it good!
Patrik: Yes! So what you’re saying is, you know, basically if you’re making an early connection with Family members of critically ill Patients, would you say you’re taking some of the heat out of the situation? Is that what you’re suggesting?
Lorette: That is what I’m suggesting, exactly! Yeah!
Patrik: Absolutely and I agree with you that, you know, if you can, you know, obviously we keep repeating, or I keep repeating myself by saying we’ve got to make sure the clinical things are under control, but I totally agree with you that once we’ve got the clinical things under control, if we take a family member by the hand so to speak, you know and say “Ok, I know how you feel and is there anything I can do to improve your situation? Because most likely you won’t sleep for the next two days, because your emotions are running wild and you know, you’ve got lot of things to think about, you know, depending on the situation but I totally agree that if, you know, we can literally take somebody by the hand and say “hang on a sec, I think I know how you feel and what can we do to improve your situation?” You know and I think it’s great what you’re doing there in terms of doing surveys of Families, of how satisfied they are not only with the care their loved one is receiving, but also, well really the care they are receiving!
Lorette: Yes, exactly,yeah!
Patrik: You know and that is such a valuable point, you know and in this day and age you know in this day and age Lorette, you know the Internet has risen in the last 10 or 15 years and you know the Internet from my perspective has changed a lot of Industries, you know and health care or even Intensive Care is almost an Industry by itself and you know, with the rise of the Internet, where do you think that in this day and age Family support for critically ill Patients is actually going? You know there’s not only the rise of the Internet, but there’s social media now, you know, do you see any leverage points with the Internet and the rise of social media, to provide more Family centred Intensive Care?
Lorette: Yeah, I think it can be very improving that … I think that the Internet and the social media can help in working together. There are many initiatives, national and also international, we now know, to put this important subject on the map of healthcare and partnership can make it stronger, also for Patients and relatives. They learn that they are not standing alone and they get better informed by the Internet. And their voice gets stronger and professionals have to see and hear them and in the future the Patients and relatives making the difference I think! You can read about social media about the Disney concept and compassion for care!
And I think that Peter Gibb has a website, you have a website and there’s Dutch websites and it’s called ‘laying on Intensive Care’ and people, Patients and ex-Patients, relatives, we say that the website is there, they can look on that and see what they are going through is so very special, it’s traumatic or it can be traumatic! And it’s god for them that they can read it! And with social media we get in contact with each other and that is good!
Patrik: Absolutely, absolutely! We can get in contact with each other and you know, as a starting point, you know, whether it is social media or whether it is just a website, you know, I mean 10 or 15 years ago it was almost impossible for a Family member to look for, you know independent information, you know, whereas now with the rise of the Internet, you know, people can find independent information and you know…
Lorette: And they get more independent and they can get their voice heard!
Lorette: So what you’re doing with your website and I said it to you before, it’s so very special, because you get the relatives heard and you get them a powerful thing, to make them know how they can ask those questions and that it’s normal that they are feeling afraid and everything and you make them empowered and that’s very good as a basic thing, that we work together and not that we health professionals say “you have to do it like this or that” but that they can also say “this is what I need and this is what I want you to do to help me, you can help me like that!”
Patrik: Absolutely! And look, I’m a big believer, in any area of life really, to empower people, and you know, I think Intensive Care traditionally has been- and I’m almost bound to say, a sort of conservative environment, where doctors and nurses have a lot of perceived power and you know and people respect that, sometimes they are even afraid of it and I believe you know with the rise of the Internet now and social media in particular, there will be other sources accessible for Families and you know and that hopefully, you know, gives them more power and influence and gets them to ask the right questions, you know! And I’m not saying that Intensive Care Units, you know deliberately want to harm people or Families, but I do think there is a bit of a barrier or there has been a bit of a barrier, in terms of the perceived power, in terms of how powerful doctors and nurses are, compared to how powerful is a Family member if their loved one is critically ill, you know!
Lorette: And I think that now with the Internet, people in all places, not only in hospitals get more empowered. They are there to ask questions and I think it is going to be very, very different in the future! We as professionals have to hear them and to see what kind of Hospital we show to them and get to them! They get the voice of that!
Patrik: Absolutely! And look, you’ve or we’ve just mentioned the sort of the perceived power of doctors and nurses and because of that where do you think Intensive Care Units can improve when it comes to Family support in Intensive Care?
Lorette: Yeah, I think when we are listening to Family needs, we’ve learned a lot from the Quality index that we do for Family satisfaction in our Intensive Care and we did improve things like the introduction of the diary, I think that was very important for the Patients and also for the relatives and by introducing a book, it’s called “Intensive”, we get it sponsored from a company, for information about all things that happen in ICU and we’ve introduced after three days, what I’ve said to you, a conversation with a family member and a nurse about the needs and feelings about the acute hospitalization of their loved one and what we can do to make them feel satisfied and heard and our doctors talk twice a week with them and to explain how it’s going with the Patient!
And we have also set up a multidisciplinary meeting contact with a social worker and a psychologist and a spiritual caregiver!
Patrik: Right! I mean that’s fantastic, again you’ve mentioned that earlier, you know of having those one on one meetings or in a group with a family member! I mean, I think that is very special because form my experience most ICU’s either do it on an ad-hoc basis, meaning you know, they do it if they think it’s really necessary or they don’t do it at all and they give family members, you know, updates on the bedside, which isn’t necessarily the right environment. I mean by just taking that extra step that you are doing, by removing the family member from the bedside, getting them to a different room and then talking to them, I think that’s just such a massive improvement where I believe a lot of ICU’s can learn a lot from!
Lorette: Yeah, thank you and I think it’s so simple and so very, you get really a bond! I once read it on social media that in America, there were two doctors, who said the same thing as I’m saying, they tried to introduce, they called it “spiritual moment” and they called it like that, because you just sit there and hear! And you give them time a little bit, maybe sometimes 10 or 15 minutes, but it’s so special for them and yeah, I can’t explain it, but they can form a bond with you and that’s so simple and I think… I can’t understand why it’s so difficult to introduce it, but it’s difficult!
Patrik: It is difficult, but what you’ve just described, it’s simple and it sounds like it’s effective, would you agree with that, that it’s effective?
Lorette: Yeah, it’s effective and it’s also for the professionals, because I do it a lot, I think and with me there are the Family members! It’s also very nice to do it, you learn a lot from them and it’s in such a short time you learn as a professional so many things and it also makes your job very…yeah
Patrik: More satisfying? Would you say it makes your job more satisfying?
Lorette: Yeah, for me it is, yeah!
Patrik: That’s amazing! So, what you’re really doing there is you create a win-win situation! So you’re making the life better for a family member and you’re also making your life better, because you know, I mean, any Intensive Care Nurse who has been in difficult situations knows, you often can’t just go home and leave it all behind, you know, I mean, we are dealing with borderline situations, you know, which sort of leads me into, you know end of life care, which we obviously deal a fair amount with in Intensive Care. What’s your experience with end of life care in ICU and what do you think we as health professionals in Intensive Care can improve in those very difficult and sometimes heart breaking situations?
Lorette: Yeah, it is very difficult what you’re saying, but what we do is we take the time for the Patients and relatives and we have a lot of, the Intensivist talks, I said it to you, two times a week with the Family, but when it’s necessary we talk every day with them and when things don’t get better they are well informed! And we hear what they need and expect in these times and we give them the time to be with a terminal Patient and we give them and we try to give them privacy in a separate room and sometimes I also did, I got a beloved dog in… I don’t have to say that so very loud I think, but sometimes you can do more for the terminal Patients! You’ve heard the needs of the people and you’ve heard how the Family is and you’ve heard how the Patient was or is! You can do special things!
Lorette: Yeah, so that’s what we do and I once heard an Intensivist saying “it’s finally very strange that in care that there is so much so difficult from caring and curing” from, how do I say, because when we are curing the Patients, the professionals are in lead and when we are caring, so the palliative caring, the family members and the Patients are in the lead!
Lorette: So why can’t it be together, why can’t it be also like that when curing people?
Patrik: Wow! That is something I never thought about Lorette and I think that’s a fantastic point that you’re making there! So basically what you’re suggesting is, if we are curing, we as health professionals are leading and if we are caring, which often is the case you know, in end of life situations, palliative situations, you’re suggesting that the Patient and the Family are leading, but what you are really saying is that how can we combine the two together in every situation?
Lorette: Yeah, that’s true! That is my ideal!
Patrik: Yeah, look, I think that’s a fantastic point, I never, I never thought about it this way, you know, it’s always good to have distinctions and you know and break it down to you know “what are we actually really doing?”, you know
Lorette: Yeah, maybe it’s good in the future that we set up rules how Intensive Care has to look like when you’re really family centred, what does it mean? And maybe you can put national and international rules about what an Intensive Care has to look like! And really standing for that!
Patrik: Absolutely! Look and I think that is a fantastic goal and a fantastic vision you know, I guess your experience from the real world, just as much as my experience from the real world shows that you know, I believe it’s still a sort of fragmented or individual approach of the ICU, you know. I mean, I worked, you know, I worked in three countries, in Germany, in the UK and in Australia and I have seen very different approaches you know in terms of how gets a family approached, how do end of life situations get approached, you know. I could tell there’s huge differences in how units approach those topics and you know, I think it would be fantastic to have, you know, really international standards, to you know, even end of life care, you know. I think it would improve, you know, not only the situation for a Patient, for a family, it would also improve the situation for us health professionals!
Lorette: Yeah, I think so too! Yeah, yeah! And it mustn’t be difficult to do I think when we do that. It’s probably a good thing from the Internet of what we can do together!
Patrik: Absolutely! The Internet brings the world together and the Internet, you know, makes information accessible 24 hours a day, you know, for anyone who has access to a computer and to Internet, you know and that leads me Lorette, to our last question there and one of the challenges that I have experienced while working in Intensive Care is that Families are often overwhelmed by the experience of having a loved one critically ill in Intensive Care and therefore they’re very often almost paralysed with fear and frustration. I also find that Family members of critically ill Patients are unable to articulate their wishes for their loved one or their wishes for themselves even, you know! How do you think a more family centred approach of critical care can help those Families?
Lorette: I think, just like I said the simple thing, to take the time for them and I think what helps is to give them a voice and to hear and see them and to give them time to explain their needs and show their emotions so that they feel empathy and they get informed and we get them involved in medical decisions, sometimes!
Lorette: And we let them help when they want to care for their loved one and we keep them involved in what we are doing and very important, we give them this care continuity and structure, so that it has a place in the dossier, the computer programs, so every professional knows what this family is going through and what we can do to help and what we did say to each other and we write it down in the computer, the things that helped them!
Lorette: So every professional knows what they can do!
Patrik: So what you’re suggesting there Lorette, you would have a separate document in your documentation system, just for Family members, is that correct?
Lorette: Yes, that’s correct!
Patrik: That’s fantastic I mean, you’re a million miles ahead, of you know, of a lot of other units I would think there?
Lorette: Yeah, we set our tools in Holland, we had a symposium, we published our tools on the Internet, the Lectorate in Nijmegen they had their own blog and there are more and more ICU’s who are having those documents for the Families and there are also ICU’s who have the documents on the Internet, where Families can access the documents on a special and private site, where they can write their diary on that special site. There are also a lot of things that are improving in Holland about that special thing!
Patrik: So what you’re saying is, you know, your hospital or your Intensive Care Unit isn’t an isolated place and what you’re saying is, there is sort of almost a consensus in the Netherlands that, you know, from other Hospitals or from other Intensive Care Units that “we have to simply take better care of our Families in Intensive Care”.
Lorette: It’s getting stronger, it’s getting stronger yeah!
Patrik: Right! And you’ve mentioned that you get some of your Families involved in medical decision making. What does that look like in practice?
Lorette: That’s why our Intensivist or the Doctor talks to the Family two times a week and they get involved in how things are going and of course the Doctor is the final decision maker about what’s happening, for sure! But Family members are heard about what the Patient could do and how a Patient’s life was and what a Patient expected from life and we hear that of course and we reflect that on the Family, so that they feel involved with us! But the final decision about, what can I say…
Patrik: About treatment?
Lorette: Or do we have to do this or that, that’s what the Intensivist will discuss with the Family but the final decision is on the medical grounds.
Patrik: Absolutely! But you know, still, I mean, you know, something that I think, there is a lot of improvement here in Australia, you know in Intensive Care at times is, you know, often I see that you know, medical decisions are made as a matter of fact, rather than in a consultative environment, where, you know, what you’re just describing there, where you know, you would sit down with a Family, you know and you know, talk about the Patient’s life, you know, what would the Patient want, if he could speak for him or herself, you know and I have sometimes seen that those decisions are sometimes made almost in a vacuum, you know, just purely based on a, you know on a medical, from a medical point of view, without actually taking the bigger picture, the holistic picture into consideration, you know!
Lorette: That I think in the Netherlands is going very well, I think, yeah! Because people have a strong voice here in Holland and I don’t know if you know that?
Patrik: Oh, I do know that, I do know that! Obviously being European, I do know that, you know, I think, especially in the Netherlands, it’s a very sort of forward thinking and liberal country, I believe, you know, where, I think it’s very forward thinking, you know and I think some, a lot of good initiatives have come out of the Netherlands in medicine, in nursing, you know and I think people, you know, should open their mind and look at what’s happening in other countries and look at how it can be applied in their world you know.
Lorette: Yeah, yeah! It would be very good Patrik!
Patrik: Absolutely, absolutely! Look, I’m sure, you know, you with the “Family centred Intensive Care”, as well as I with the intensivecarehotline.com, we keep striving for, you know, a more family centred approach in Intensive Care and hopefully we can move things forward and give Families a stronger voice!
Lorette: Yeah, I think Patrik, we do that, we hoped it, but we now also already are doing this! And I have a strong feeling that, and I think that over a few years that it will look very different!
Patrik: I think so too! I think so too and you’ve got to start somewhere you know, I mean, I you’re never starting, you can never achieve your goals, so you know, I think we’ve taken the first steps by, you know, by putting some information out there, like in today’s interview and whoever is going to listen to this interview we only can hope that it gets in front of the right audience, whether it’s health professionals in Intensive Care, whether it’s Families in Intensive Care, you know, trying to improve things… pardon?
Lorette: That would be very good, yeah!
Patrik: Absolutely, absolutely! So we’re trying to put this interview up on the Linkedin group and the interview will also be available on the intensivecarehotline.com website and Lorette, is there, are there any other questions or any other comments you want to make, have you got anymore questions?
Lorette: I think it’s very clear like this and I hope that people will report on what we are talking about and I hope we get a discussion around, also on the Linkedin site and also on the website, sometimes it’s very difficult to get people in motion and I hope it will do something!
Patrik: Yeah! Absolutely!
Lorette: They ask you and me and we talk together!
Patrik: Absolutely! And do you have, do you have and I don’t know that, do you have a website, a resource website that maybe in the Dutch language, where people can, besides the Linkedin group, is there a language, a language…sorry, a website in the Netherlands where people can get more information?
Lorette: Yeah, Idelette Nutma has setup a website that’s “on ICU laying” in the Netherlands and there is a website for Patients and relatives and also, she tries to get professionals in, so that’s a good website and has started in March this year! I will hope that people also look there. There is a forum and you can talk also and I hope that on my Linkedin site to get not only professionals, but also to get relatives of Patients there to talk, that would be very nice to talk together!
Patrik: Absolutely, absolutely! So, I really appreciate your time that you spent on this interview, thank you very much Lorette and I’m sure we try and continue the dialogue and you know, maybe we can, you know, do another interview very soon and really want to thank all of our listeners as well! So you can get more information on the Linkedin in group “Family centred Intensive Care” and you can also get more information at intensivecarehotline.com and with this, I once again want to thank Lorette for coming on to the interview and I want to thank all of our listeners and we’ll talk to you next time! Thank you!
Lorette: Thank you, too!
Patrik: Thank you, bye!
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