Reconstructing the Past with ICU Patient Diaries

Image courtesy of Antonio Litterio under a Creative Commons license: BY-SA.

Image courtesy of Antonio Litterio: BY-SA.

In permeating across disciplines, illness narrative research attains a level of potency, one that spans the globe. Dr. Ingrid Egerod, a nurse from the University of Copenhagen, spoke on Tuesday about “ICU patient diaries and follow up in Nordic countries.” She highlighted how narrative is being used by ICU nurses to enhance care in Nordic countries.

What is unique about ICU patients is that many spend weeks at a time unconscious, and later they are unable to remember the ICU. This dark vacuum of memory can be the cause of alarm for many patients, creating friction that sparks psychological discomfort for a patient in later years.

In the Nordic countries, nurses like Ingrid Egerod aim to fill this void by creating ICU patient diaries to capture the day-to-day lives of these patients. Unlike hospital charts, these records string together ICU events to create a coherent ICU experience. These diaries then become tools to aid patients in reconstructing their time in the ICU and creating their own illness narrative.

These have had an incredible impact on many members of the ICU scene, ranging from nurses to families to patients. This task seems to renew a sense of purpose for nurses and to help families to understand the progression of medical events through story. Egerod and others have demonstrated that patient diaries decrease the occurrence of Post-Traumatic Stress Disorder in ICU patients. After patients are presented with their diaries, nurses follow-up with them  and use the diary as a guideline for conversation. These narrative activities are now being extended to include patients and families who are encouraged to use writing as a therapeutic form of expression.

It was fascinating to hear about this illness narrative research and to think about how narrative can adapt to and address the needs of the ICU unit and others. I also found it exciting to see that the idea of narrative is growing in other countries as well.

Here were some of the questions that I had, along with paraphrased answers provided by Dr. Egerod.

  • How are these ideas being received globally?

There appears to be enthusiasm for narrative and a growing appreciation for the patient experience, but especially in countries like the U.S. where nurses are often overwhelmed as it is, the obligation of ICU patient diaries can become a burden. This is definitely an obstacle, but it’s important to recognize the long-term benefits of this immediate investment; reducing psychological distress from the start can lead to less problems down the road.

  • Have there been efforts to publish these narratives so that other patients and health professionals can learn from these experiences?

Not so much, due to the intimacy of these narratives. Excerpts have been cited in journal articles, but these diaries have been primarily a resource for the immediate people involved in each narrative.

  • How do physicians play a role in the ICU patient diaries?

It seems as though physicians are more backstage for these efforts. Nurses have adopted the ICU patient diaries as something of their own, and doctors are less involved actively in the daily care.

I guess that’s what I’m trying to push again with my illness narrative research. I am glad to see that health professionals such as nurses are becoming more involved in narrative work, but I think that this is just as crucial for physicians. There may not be time for this level of engagement on each person’s part, but I believe that at least an awareness by all health professionals would make a difference.

48 Comments

Filed under Miscellaneous Musings, Narrative Medicine Research

48 responses to “Reconstructing the Past with ICU Patient Diaries

  1. This is an interesting topic

  2. tomac12

    Reblogged this on thomasmhenson.

  3. @Have there been efforts to publish these narratives so that other patients and health professionals can learn from these experiences?>>>Excellent question! And superb topic..I do believe you’re on to something here that is highly important..Sadly, in the U.S. nurses & health physicians alike are overwhelmed..however what is at stake is IMPORTANT..our health. And couldn’t keeping these type of journals lessen that burden? While on the one hand it might make more work; on the other hand it will give more insight for other patients in the future. Thats important! For instance..Its known that much of the known side effects of available medications; came from reports from patients using said medications. So in that regard couldn’t journals of ICU help other patients with same illness? The answer is YES it very well could. I thank you for pushing this & for posting it..for those of us who weren’t aware (my hand held UP high) we can now join the ranks of wanting to see it come to the U.S..If there is a vote for it; I’ll be first in line to vote it in. 2 thumbs UP on your write !

    • Thanks for your enthusiasm, bernasvibe! I think you’re right- we need to recognize the long term benefits of these kind of investments. We need to make decisions about health care practices by focusing on the patients. It’s interesting to see how this has been so successful in other countries, and I sure hope that this concept takes off and finds its way into the U.S. system!

      • Ditto! We always think we’re so , so progressive here; and the front runner of all things AHEAD..Yet, some things we could learn a thing or two from other countries..And we truly should be mindful & open to that..Or we just might fall even further behind ; than we already are . Real talk for real.

  4. jamesroom964x

    This is really cool. I think a lot of times as patients, it’s easy to have little to no sense of agency. These procedures just “happen” to you. I imagine it would be much worse having no recollection of them, so it’s nice to see the patients more involved in their treatment, especially through writing.

    • Thanks, jamesroom964x! I think you’re exactly right- there seems to definitely be a loss of agency through the ICU experience, and I believe that writing can be a powerful tool to regain it.

  5. This is very cool. I’m a physician assistant, and I can see how this would be so useful. Anything to combat PTSD is 100% worth it in my book. If I worked in the ICU, I would gladly participate in this important treatment modality. As it is, I’m at the opposite end, in the ER.

    • Thanks for the interest, emlee1973! I think PTSD as a result of medical care is a scary reality that needs to be addressed more as we move forward. And I wonder, do you think writing could have its place in the ER somehow? Maybe in the aftermath of the ER experience?

      • Let me think on that. As a writer myself, I think that writing can be cathartic in any situation. Because the ER is such an abbreviated medical exchange with little if any follow up, I’m not sure how one would institute it.

  6. This is great! I’m a hospital chaplain assigned to ICU; my job is basically giving patient’s a place to tell their story. I think this concept is invaluable in the healing process. Since nurse’s are so overworked, I’m wondering if hospital chaplains may take a bigger role in assisting with the diary.

    • Thanks for your support, baristakait29! I think that’s a great idea- with the medical sphere centered on collaboration and balancing support, that might be a good way to bring ICU patient diaries to other places.

      • Great. I’m glad this was helpful. Sometimes it’s assumed that chaplains are just there to talk about God or something, but really we’re there for emotional and spiritual support. I know a lot of nurses would love to sit and talk with their patients, but just are so overworked they don’t have the time. I’m looking forward to reading more of your thoughts and experiences. Thanks again for this.

  7. What a great idea. If everyone slowed down a bit, then maybe there would be time to fill in the blanks.

  8. Having worked in a hospital, it’s hard seeing how overwhelmed those who work in direct patient care can get. In the typical U.S. fashion, we just pile more work on less people, because looking/being busy is of utmost importance. Yes, productivity is of value, but our nation pushes this idea too far in the wrong direction (this stemming from our national desire to dominate everything). We have lost site of the value of the mindfulness that comes with slowing down. We need more nurses, support, and more patient-centered care. Let medical staff do what comes naturally to them, as most have come to their professions because they generally CARE.

    • Thanks for your insight, Kilter Annie. You bring up an interesting point about our nation’s drive for productivity and how that is steering patient care away from care. It seems as though striking this balance, of enough people to collaborate and contribute effectively, is where the challenge lies.

  9. You’re aware (?) of the course taught at Columbia, by the woman who invented this here….?

    It is a great idea. I am a writer who has had four orthopedic surgeries (3 minor, one major) since 2000 and it’s been nuts. I have been lucky enough to write about some of it and published two NYT essays about my experiences of the medical system, one positive, one less so. Patients are (and feel) so totally vulnerable in the hospital. It makes the experience so much more stressful to know that everything is done TO you, on their schedule, not when or how or if you wish it.

    I grew up in Canada and have experienced medical care there and here. Some mighty big differences, for better and for worse.

    • Thanks for sharing your own experiences, broadsideblog. Yes, I am an avid fan of Columbia’s supportive environment for Narrative Medicine as well as Rita Charon’s groundbreaking work in this field, if that is what you are referring to.

      You bring up an interesting point about the passivity of the patient experience, and I think that really fits in with the importance of writing exercises such as this. The opportunity for empowerment through narrative has incredible potential in this sphere, in my opinion.

      Do you have any thoughts about how incorporating this kind of work might be different in Canada and in the U.S.? And I look forward to reading your NYT essays!

  10. You have piqued my interest.

  11. What a nice blog and insight into what goes on in the ICU! Thanks for opening up these diaries to me!

  12. Great blog! I enjoyed reading the post.

  13. Hi Trisha,

    My name is Allison and I will be a first year medical student this fall. Your post caught my eye because I have been studying this sort of thing for the past few years as a part of my graduate program in bioethics and medical humanities. Have you ever thought of incorporating Narrative Ethics into your research? I think it could provide some support to your overarching theme of stories being pertinent to quality patient care. Nice work!

    • Hi Allison,

      It’s nice to meet you! I think you’re exactly right; I’ve become incredibly intrigued by Northwestern’s Masters Program in Medical Humanities and Bioethics, and I definitely think that bioethics is intertwined with this kind of research. If you have any suggestions for key resources that I should look into, please do let me know. Congratulations on medical school, and I look forward to hearing about your continued experiences in this exciting field!

      • Thank you! I will compile some of my resources and get back to you. And thanks for following my blog! I look forward to seeing your continued success with your project.

  14. Pingback: Reconstructing the Past with ICU Patient Diaries | learningyouth

  15. I love this idea. I’m sure it will prove helpful to a great many people who have gaps in their memory as a natural by-product of a traumatic event such as being in an ICU.

    • Thanks for your enthusiasm, Cerridwyn! I agree, this idea seems to align well with the traumatic ICU experience, and it’s exciting to see its positive effects.

    • Thanks for the support, Cerridwyn. I think this seems like a relatively natural way to combat the natural trauma associated with ICU experiences.

  16. I have no memory of my DIEPP breast reconstruction that ended in renal failure and anoxic encephalopathy. My family tells me I did all kinds of stuff, ate, sat in a chair, talked. I remember nothing. It’s maddening. A diary is a great idea, but it doesn’t mean that the family can be encouraged to do it either.

    • Thanks for sharing, queenlorene. I think you’re right; there are limits to how effective these diaries can be without family support. But it seems like we have to start somewhere, and I think health care is a good place to address these issues and bring them out into the open. If medicine appropriately appreciates this time period, perhaps it will begin to encourage family members and loved ones to appreciate it as well.

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