How a charity in France is supporting intensive care units: An interview with Anne-Sophie Debue

Summary

In this interview, Anne-Sophie Debue tells us about the 101 Fund in France, a charity that develops projects to support intensive care units, and a tool that they have developed, LifeMapp, which supports patients and their families during and after intensive care. 

About the Author

After 12 years as a nurse in a Parisian ICU (Cochin Hospital), a master's degree and a PhD in ethics, Anne-Sophie is now in charge of developing the projects of the Better Support division of the 101 Fund, which strives to improve the support provided to patients and to their relatives during and after their stay in the ICU.  Anne-Sophie is also a paramedical member of the Executive Committee within the French Intensive Care Society (SRLF) and a member of the CA within the French Federation of Intensive Care Nurses (FNIR) .

Questions & Answers

Hi Anne-Sophie, please tell us about yourself and the 101 Fund?

My name is Anne-Sophie Debue, I have an ethics PhD and I was a nurse for 12 years in a Parisian intensive care unit (ICU). I currently work for the 101 Fund, a charity that raises money to develop projects and tools that are free for any ICU that wants to use them. We have three main goals for ICUs. ‘Better research’ to accelerate findings by funding innovative clinical and fundamental research programmes and implement new technologies. ‘Better care’ to help medical staff in putting into practice a strategy of systematic implementation of research results to improve practices, quality of care and reduce mortality. And finally, ‘Better support’ for patients and their families during and after intensive care.

Why do patients and families need additional support to the care they are already receiving in ICU?

ICU stays can impact on patients in many ways: it is called post-intensive care syndrome or PICS and includes: (1) physical sequelae of the pathology leading to the ICU admission and also sequelae from the treatments that are necessary in order to save the patient’s life; (2) cognitive sequelae that can be linked to the initial pathology but also to sepsis, inflammation and some ICU medications; and (3) psychological sequalae, like post-traumatic stress disorder (PTSD) (30–50% of ICU patients), anxiety and depression that can be linked to some of the neurological consequences of pathologies and treatments but also the realisation of one’s vulnerability and one’s mortality.

Patients’ relatives are also at risk of developing what is called PICS-family—that is, PTSD, anxiety, depression and complicated grief. PICS and PICS-family are very difficult for patients and relatives to overcome. We try to reduce these symptoms and help patients and families to get back to the best life possible.

We have developed three tools to help with this: LifeMapp, LifeMapp diary and Second Life.

Tell us more about LifeMapp

LifeMapp is a free online tool for any ICU that needs it. You can customise your own webpage on LifeMapp: insert any pictures you want from your unit or your team, phone numbers, visiting hours, etc. This customised webpage becomes the frontpage for your patients and their relatives to enter the website.

The rest of the website is standardised; all the content has been written by clinician volunteers and proofread and approved by a team of former ICU patients and relatives.

You’ll find information such as what is intensive care, what the machines are, what to expect in an ICU room—you can do a virtual visit of an ICU room and click on any device that triggers your curiosity. There is also information on the different professions that may be part of an ICU team and what their role is. There’s information on the roles the relatives can play and how they can better support the patient during their intensive care stay: what they can do for them, what they can tell them.

Often relatives are afraid of touching the patient and interacting with them. It’s important to offer them support on how to manage their own stress, how to talk to children about it, what they can and can’t do in the ICU. You’ll find everything on LifeMapp.

LifeMapp is free to implement in any European or worldwide ICU. Once the unit sets it up, we send them posters with QR codes to display so that patients/relatives can access LifeMapp.

What is the LifeMapp Diary?

The second part of the tool is the LifeMapp Diary, which is a secure platform which you connect to with an email address and a password. ICU diaries are a way that clinicians and relatives help patients get back their story. When you’re in ICU you may go through coma and delirium, and when you come out of ICU you may feel that you have big gaps in your memory. In the past, the units used little books that the nurses wrote about what was happening to the patient on a day-to-day basis, but nowadays it’s becoming more and more of a shared initiative between the relatives and the caregivers to allow the patient a sense of empowerment when they are recovering and then leave hospital.

However, when this exists as just a paper book there are limitations and safety issues. First, anybody who enters the room can read everything so from a safety point of view it’s not perfect. Second, only people visiting the patient in ICU can write in it; family members in another part of the country or world will never be able to contribute to the diary. Having it electronically is important for the patient as it is something everyone can invest in with a lot of humanity and emotions. Third, with the paper version you can lose it, which means losing a big part of your life, which can be very traumatic for the patient. We decided to overcome all these issues with the digital diary.

What is the benefit of a digital diary for the staff?

For the ICU team, LifeMapp Diary looks like an online platform where they can find all their patients’ diaries. It’s very easy to create a new account for new clinicians and open new diaries. The staff will be able to write messages very easily and can also invite relatives to write messages for the patient. The messages will be displayed on a 'wall'. 

Staff can write messages and add glossary entries to their messages in order to help the patient and his or her relatives understand technical words and save some time. They can add pictures and create sensitive content that can be hidden behind a filter so that patient and relatives won’t stumble across it unless they want to see it. Depending on whether you’re a clinician, a relative or the patient him/herself, you’ll have different access. There are also confidentiality circles, allowing the admin relative to give different accesses and decide what the other relatives can see or not see in the diary. When the patient is discharged, he or she has the option to export to a PDF and print it all out at the end.

After the patient is out of hospital, he or she and their relatives have 6 months to still write in it. At the end of the 6 months after discharge you have two years to export the PDF. Sometimes patients want to read it as soon as they leave ICU, but with some patients they may not to read it until one or two years later. It’s their choice.

What feedback have you had from patient, families and staff?

We don’t have quantitative data yet, but it’s almost three years since we have been using it in France and we have had very good feedback from clinicians saying it’s easier to use than the paper version. They feel it’s nice to write in it from outside the room of the patient and give them themselves time to stop and step back and think about the day without the alarms and the patient or families asking for things. They like that it’s very intuitive and easy to use. There’s no learning curve, you just open and access it.

Staff feel they have a connection with the patient and they like that they can allow lots of people to access the diary but also have the protections and the confidentiality secured for the relatives so they can decide who sees what. It’s much richer in content and information than the paper diary.

Patients and relatives’ feedback is very encouraging: the overall impression is that LifeMapp Diary is easy to use, easy to download and that the content is very useful. A patient said the digital version was a good way to continue to communicate with her family after discharge and keep everyone up to date without having to repeat yourself in every message, which can be tiring physically and emotionally. It also meant everyone had the same information at the same time. She also liked having the option to print it out as a PDF so she could have a paper version to keep at home. Feedback regarding the concept of ICU diaries and the possibility to get back pieces of your history through clinicians and relatives’ writing is always extremely positive: patients feel they get back some of their life.

Everything has been designed with patient and relative input.

How many hospitals in France are using it?

Currently 27 ICUs in France are using it and this will increase. We have over 100 units wanting to use it in France, Germany and Switzerland and we have just launched in England and Brazil. We have five units in England interested. LifeMapp is translated in English, Portuguese and Dutch, and we are currently translating it into German, Spanish, and Italian.

What else have you in the pipeline?

LifeMapp is continuing to evolve. We want to adapt LifeMapp for paediatric ICUs as there are some things that are specific to paediatrics. We also want to create space on the website that is dedicated to children visiting their relatives to explain to them about the ICU environment, answer their questions, and to give some tools for their parents to help the children understand what is happening and deal with strong emotions.

We are currently developing a discharge part for the platform. A lot of ICUs have welcome leaflets but not many have ICU discharge leaflets preparing the patient for life after ICU. Many patients have relocation stress – this is the stress patients have when they leave the secure environment of the ICU, where someone is there to attend to their every need, and they go to another unit or ward where there are less caregivers and less surveillance. It can be frightening for them and it’s important for the patient to better understand what the next steps are and to prepare themselves. The discharge part of the platform will contain information about what to expect when moving from ICU to another unit right through to going home and going back to work which maybe two years after ICU.

The aim is to have everything a patient and family will need on the platform, all in one place, that is as understandable and complete as possible.