General — TransplantLyfe

General

Medical Narratives

AliEm14Expert
Transplant Patient
Updated June 3, 2021 in General

I'm currently enrolled in a college course called rewriting medical narratives. It's taught by Emily Rapp Black, if any of you know her. And it's talking a lot about the links between story telling and health care, how modern medicine has made so many advancements but it's also lost the ability for doctors to just be present with their patients and learn and have empathy for their stories.

This is something I've noticed with being in the hospital so much since transplant, especially in this Covid season, and it's sparked ideas in my brain for how healthcare needs to change and could be more patient focused. I'm just curious what your thoughts are about this. What was your experience in the medical system, how did you feel supported by your medical team and in what ways do you wish your medical team would listen to your story more instead of just seeing facts and numbers?

1 - 8 of 8 Replies

  • JimGleasonTransplant Patient

    As a member of my hospital's PFAC (a common term: Patient & Family Advisory Council) that strives to provide patient input to everything going on in that facility, we are encouraged to volunteer in joining hospital groups who are doing jusst about anything in service to the hospital and its patients, and that includes offering new ideas or initiatives for them to consider. One recent initiative that has been a huge success is s story telling resource that has rolled out across all the hospitals in this Penn Medicine corporation. Patients (and hospital staff) are encouraged to share their personal experiences by phone or web input that then becomes part of an on-line indexed library of stories for anyone to listen to. You can see this at https://www.pennmedicine.org/site-search#q=story

    Hope that can help. It's been a very popular new feature for everyone.

    January 11, 2021
  • AliEm14Expert
    Transplant Patient

    That’s awesome Jim! And something I think hospitals need a lot more of. I see things slowly trending towards more patient focused care but we still have a long way to go. This is a field I’m really interested in and would love to bring this storytelling format to my hospital and transplant program

    January 12, 2021
  • JimGleasonTransplant Patient

    If you need a Penn Medicine admin contact to put forward to your hospital team, just write to me at GleasonJim@trioweb.org - it really has been (on that council now for about 5 years) a fascinating and very rewarding engagement with the hospital staff on many interesting projects, offering them the patient perspective on initiatives they were undertaking. That included tours of the design for a new hospital with us giving views of patient room design alternatives, for one example.

    January 12, 2021
  • KarinExpert
    Transplant Patient

    @JimGleason and @AliEm14 wow! I love this topic and it is so important. When I studied medicine and did my internship we were taught by drs who looked pts in their eyes, asked them questions about their lives and their bodies - now when I see a young dr they look at their screens and only focus on their areas of expertise - we have lost the comprehensive approach and the intimate contact w our drs - I would not want to work like that and I am not happy w those consults as a patient. This our approach to “take over where the drs leave” @lescp3 quote and I hope we can do much through TL and also through other approaches where patients and care partners and fill the gap. I don’t mean they should treat the patient - but be there for them emotionally and support re the daily issues they have.

    January 12, 2021
  • JimGleasonTransplant Patient

    Well said, Karin. Personally, I am blessed with every one of my various doctors being the kind who give true engagement with the patient, making eye contact and really listening to me during our visits. When I encounter a doctor who doesn't' do that, I 'fire' him/her (after all, they are working for me, being paid by me, so subject to my values) and find another who is tuned in as you describe. Fortunately, we are in a very resource rich medical environment here in the Philadelphia area, so we have many options when it comes to a choice of doctors. I feel bad when I hear a patient say they don't like their doctor, but they don't either have a choice or don't know they have that choice. That care is too important to entrust it with someone we don't feel is working in our best interest, certainly the case with some today who have to rush through time with their patients. But as I said, I am truly blessed with my team of doctors who have kept me alive and well in both good times and challenging times over these 26 years post heart transplant.

    January 13, 2021
  • AliEm14Expert
    Transplant Patient

    I love this, Karin! Even when I had my transplant and was in the hospital I found patient resources were lacking so much. As I've continued to recover, I've gotten more into the world of advocacy and sharing my story, and I've realized how much lack there is within the medical community. All I wanted when I was sick was to read other people's personal narratives, and there isn't a ton out there. I would stay up late scrolling through instagram just trying to find other people's stories who were showing up and being transparent the way I wanted to see. I love that transplant lyfe is becoming that bridge for people, so we can find each other's stories easier. I love that I get to be a voice in this community, and on my personal platforms, so that maybe the next young person who needs a transplant won't feel so alone. That quote you shared really impacted me, I think I'm going to use it in this week's assignment on medical narratives.

    January 13, 2021
  • AliEm14Expert
    Transplant Patient

    I traveled 5 hours away to get my transplant, so I didn't have the widest variety of doctors to choose from. I did with my condition pre-transplant, and was very happy with my doctor. And now I am curating a team of liver doctors and transplant specialists who I am happy with. but I remember being in the hospital after my surgery, and my surgeon at the time never once looked up from his screen. I felt so alone, like to him I was just a number and not a patient. My latest surgery I had, pre-surgery I had my entire OR team sit in front of me, and we just held eye contact and the lead surgeon had his hand on my arm and we talked through the whole procedure, and why I needed it and what was important for me to come out of it with. THAT is how medical care should go, I think

    January 13, 2021
  • JimGleason_TRIOTransplant Patient

    Oh, you are so right (and blessed with that current team). Back 26 years ago, the day after my heart surgery, the surgeon (we are still personal friends even today) came into my room and laid back in the chair next to my bed (I can see him in my memory doing this even now) looking very tired. He cupped his hands together and said: "I held your heart in my hands, Mr. Gleason, and it was worn out. I don't know how it has been keeping you alive all these years." Wow, what empathy and special private moment together!

    More recently, my wife was being prepped for knee replacement surgery. Just a week ago she had buried her mother after caring for her 24 hours/day for 6 weeks. Her surgeon came in to talk to her before taking her in for that surgery and said to her: "I understand you just lost your mother. I am so sorry. If you want to reschedule this surgery (that was to take place in a few minutes) that would be ok." Now how did he even know of her loss, no less offer her that option even at this last minute before surgery? What a thoughtful man (not just a 'doctor' but a human being!). As she learned later, the intake person shared her recent loss with the doctor, as a normal part of their practice of keeping the whole team informed of important things about their patients like this.

    Two special doctor moments to share, hoping that you and all of us live to experience such thoughtful support from our medical teams.

    January 13, 2021
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