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Narrative medicine educational project to improve the care of patients with chronic obstructive pulmonary disease

Antonietta Cappuccio, Alessandro Sanduzzi Zamparelli, Massimo Verga, Stefano Nardini, Alessandro Policreti, Pasquale Alberto Porpiglia, Silvia Napolitano, Maria Giulia Marini on behalf of the Words of Breath Group
ERJ Open Research 2018 4: 00155-2017; DOI: 10.1183/23120541.00155-2017
Antonietta Cappuccio
1Fondazione ISTUD, Milan, Italy
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Alessandro Sanduzzi Zamparelli
2Dept of Clinical Medicine and Surgery, Section of Respiratory Disease, University Federico II, Naples, Italy
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Massimo Verga
3Antismoking Centre, ASST Santi Paolo e Carlo, Milan, Italy
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Stefano Nardini
4Pulmonary and TB Unit, General Hospital, Vittorio Veneto, Italy
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Alessandro Policreti
5Medical Dept, Novartis Farma, Origgio, Italy
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Pasquale Alberto Porpiglia
5Medical Dept, Novartis Farma, Origgio, Italy
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Silvia Napolitano
1Fondazione ISTUD, Milan, Italy
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Maria Giulia Marini
1Fondazione ISTUD, Milan, Italy
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Tables

  • TABLE 1

    Personal details and profile of the 74 physicians who wrote parallel charts

    Sex
     Female42 (31)
     Male58 (43)
    Age years52 (31–69)
    Professional years23 (5–40)
    Region of origin
     Northern Italy45 (33)
     Central Italy27 (20)
     Southern Italy28 (21)
    Work setting
     Working in a hospital47 (35)
     Working in local public healthcare facilities41 (30)
     Working in a private clinic9 (7)
     Working as a private practitioner3 (2)
    Specialisation
     Respiratory diseases86 (64)
     Internal medicine14 (10)

    Data are presented as % (n) or mean (range).

    • TABLE 2

      Characteristics that influenced the narrative style chosen by pulmonologists

      “Core” parallel charts“Contingent” parallel charts“Moral” parallel charts
      Charts15015359
      Region of origin
       Northern Italy39 (64)49 (80)12 (20)
       Central Italy46 (45)32 (32)22 (22)
       Southern Italy41 (41)41 (41)17 (17)
      Work setting
       Working in a hospital38 (66)48 (84)14 (26)
       Working in local public healthcare facilities43 (62)37 (54)20 (29)
       Working in a private clinic57 (17)30 (9)13 (4)
       Working as a private practitioner45 (5)55 (6)0 (0)
      Age years
       30–3947 (21)44 (20)9 (4)
       40–4944 (46)46 (48)10 (10)
       50–5939 (43)45 (50)15 (17)
       60–6939 (40)34 (35)27 (28)

      Data are presented as n or % (n).

      • TABLE 3

        Number of characters and time spent writing the parallel charts

        “Core” parallel charts“Contingent” parallel charts“Moral” parallel charts
        Charts15015359
        Characters n
         ≤10001 (2)24 (36)10 (6)
         1001–200031 (43)50 (76)39 (23)
         2001–300031 (43)20 (30)22 (13)
         >300036 (54)7 (11)29 (17)
        Time spent writing min
         <3028 (27)54 (71)33 (15)
         30–6033 (44)23 (30)30 (14)
         >6039 (52)23 (31)37 (17)

        Data are presented as n or % (n).

        • TABLE 4

          Personal details of the patients described in the parallel charts and their influence on the narrative style

          “Core” parallel charts“Contingent” parallel charts“Moral” parallel charts
          EasyDifficultEasyDifficultEasyDifficult
          Total at the beginning65%35%72%28%26%74%
          Emotions at first visit(n=93)(n=51)(n=101)(n=38)(n=14)(n=39)
           Positive16%6%19%11%29%5%
          “During the visit, the patient appeared to me serene, optimistic and open to an exchange of views”
          “The patient is very hopeful and full of trust”
           Fear and pain57%34%62%29%50%26%
          “He told me he was afraid that at 48 he was already a finished man”
          “He seemed tired, rigid, not in his usual mood. His way of dressing appeared unkempt, sloppy and a bit messy, not impeccable as usual”
           Anger and neglect7%28%5%24%0%59%
          “The patient, at the beginning of the visit, was serene, because he was convinced he was not ill, but that his problems were normal for smokers and that I would have told him that he was fine”
          “He was very aggressive and angry about his disease, and he criticised all the people he was talking about, but he was actually angry with himself”
           Submission and shame20%34%16%37%21%10%
          “There was a certain resignation about him, knowing that he had smoked for years”
          “She seemed tired, physically and morally, confused and resigned”
          Smoking at first visit(n=96)(n=50)(n=109)(n=41)(n=11)(n=43)
           Yes56%84%59%80%55%84%
           Nonsmoker/already quit44%16%41%20%45%16%
        • TABLE 5

          Pulmonologists' personal decisions and emotions as described in the parallel charts, and their influence on the narrative style

          “Core” parallel charts“Contingent” parallel charts“Moral” parallel charts
          EasyDifficultEvolvedEasyDifficultEvolvedEasyDifficultEvolved
          Total65% (n=98)2% (n=3)33% (n=49)72% (n=110)11% (n=16)17% (n=26)24% (n=14)46% (n=27)31% (n=18)
          Reasons that led to therapy change
           Illness-oriented52%0%71%40%0%35%50%28%60%
          “The change of therapy, combined with encouragement, was the change the patient needed to get out of the spiral of anxiety that enslaved him”
          “If we try to give you another bronchodilator instead of cortisone, it will be like having a car with two engines”
           Disease-oriented48%100%29%60%100%65%50%72%40%
          “A proper diagnosis through anamnesis and spirometry. Therefore, initiated therapy recommended by the international COPD guidelines”
          “I explained to him that, after seeing the spirometry results, he could not fail to follow my advice and that I would facilitate his tasks with a simpler, but still effective therapy”
          Physicians’ emotions after communication of therapy change
           Satisfaction and trust55%33%37%51%15%24%55%19%8%
          “I felt happy seeing that in a few minutes the husband, in front of the opportunity to modify a therapy that was not objectively optimal, returned to smile, with a much less concerned expression”
           Anger and discomfort5%67%37%3%62%14%27%5%46%
          “I felt the patient distant and unwilling to follow the directions given, especially for what concerns the behavioural changes. It seemed that she did not care about her health”
          “Almost helpless … I thought it was a failure”
           Duty and responsibility40%0%37%46%%23%62%18%76%46%
          “I felt I was responsible for his happiness”
          “I felt obliged to help him and make him change his mind”
          Smoking cessation strategies
           Reprimands24%100%35%67%75%54%80%90%89%
          “I ask him if he still smokes and he answers yes. AT THIS POINT, I burst out and I rebuke him because he KEPT SMOKING. I added that it's not right that I and others have to sustain healthcare expenditure while he continues to be addicted to nicotine”
           Compromise57%0%48%27%25%38%20%10%11%
          “I also took the opportunity to remind her of the damage of cigarette smoke and how she had been good recently, in reducing the daily number of cigarettes”
           Counselling19%0%17%7%0%8%0%0%0%
          “During my next visit, I tried to make the patient feel at ease, in order to better understand the stressful situations that led her to her compulsive desire of smoking”
          • COPD: chronic obstructive pulmonary disease.

        • TABLE 6

          Results of healthcare relationships in terms of therapy, activities resumed, pathway of care and adherence, their correlation to the narrative style, and the type of relationship established

          “Core” parallel charts“Contingent” parallel charts“Moral” parallel charts
          EasyDifficultEvolvedEasyDifficultEvolvedEasyDifficultEvolved
          Physicians' impression on how patients lived the therapy
           Negatively4%100%7%7%75%9%0%61%17%
          “A disaster, a bigger challenge for her, a defeat”
           Positively64%0%54%58%25%74%60%39%61%
          “I think the patient experienced care in an authentic way, knowing that there are not many other possibilities that effective … so, all in all, he was grateful to the scientific world”
          “But when he realised its immediate effectiveness and ease, he strongly adhered to the therapy”
           As a liberation32%0%39%35%0%17%40%0%22%
          “I was glad that an elderly widow had come back to plan a six-month summer vacation in advance. The therapy has restored her confidence”
          “In my opinion, the patient has experienced cure as a new opportunity to live his life”
          Resumption of the activities interrupted due to disease
           No8%33%2%7%36%4%15%56%7%
          “I knew he had abandoned the therapy I had prescribed because the results were probably not the expected ones”
           Yes47%33%44%39%29%64%38%6%46%
          “Thanks to the new therapy, he regained his desire to live, made of small but important things: meeting friends, talking to the newsagent, sometimes playing bowls, feeling alive again”
          “Working continuously, without frequent breaks, he can meet his deadlines and can continue to play soccer”
           Yes, with some limitations45%33%53%54%36%32%46%39%47%
          “He is a demanding person. He cannot do things that maybe other people of his age without COPD could do. But let's not let it go … do not ever say it”
          Thinking back to the pathway of care, I think …
           It was difficult1%33%16%0%14%5%14%40%8%
          “The path has been slower and fuller of obstacles than I had expected at the beginning”
           Something could be improved15%33%11%22%36%18%57%25%31%
          “I think it's also necessary to have a psychological support for family members”
           I did my best48%0%27%52%36%27%14%15%46%
          “I think the path of the patient is very satisfactory for the results obtained, which of course must be maintained”
           Listening to the patient is the35%33%46%26%14%50%14%20%15%
           key for success
          “Understanding her biggest concern and sharing it with her motivated the patient to follow the cure prescribed, also ensuring a continued adherence”
          Adherence
           Yes100%67%97%98%64%100%100%44%100%
          • COPD: chronic obstructive pulmonary disease.

        • TABLE 7

          Lessons acquired by physicians when writing and how they relate to the narrative style

          “Core” parallel charts“Contingent” parallel charts“Moral” parallel charts
          From this experience, I've learned …
           To be perseverant13% (n=16)12% (n=15)16% (n=6)
          “I have learned that even slight improvements need to be pursued to improve the quality of life of each individual!”
          “You have to wait patiently for the result”
           New aspects of COPD16% (n=20)28% (n=35)13% (n=5)
            management
          “Too many times we focus only on the superficial and mainly clinical aspects; in the case of a COPD patient, smoking is often a hint, a sign of other types of discomfort”
          “The pharmacological prescription alone, if not accompanied by proper education, is unlikely to succeed”
           The importance of true72% (n=90)60% (n=75)71% (n=27)
            listening
          “From the relationship with this patient, I learned that we must first cure the wounded soul of the lion, and only then intervene on the pathology”
          “That very often the quality of life and the resumption of a previously lost activity is much more important to the patient than having improved functional parameters or laboratory data”
          “We physicians are focused on the perfect diagnosis, but in this relationship I learned that often the patient makes the diagnosis, we are the translators of expressions and clues. As investigators, we can find the solution among the smallest clues, those hidden in the heart of the people”
          • COPD: chronic obstructive pulmonary disease.

        • TABLE 8

          Appreciation of the educational project in relationship to the narrative style

          “Core” parallel charts“Contingent” parallel charts“Moral” parallel charts
          The project influenced my daily practice
           Yes, partially or entirely85% (n=113)83% (n=112)60% (n=28)
          “This approach has greatly improved my relationship with patients, making me understand that empathy associated with drug therapy can be useful in treating not only the disease but also the person”
          “Yes! I am more confident about the good performance of my prescriptions”
           No0% (n=0)5% (n=7)17% (n=8)
          “I'm not used to writing parallel charts. I don't know how to describe my feelings, I honestly don't really like it”
           I already applied this approach15% (n=20)12% (n=16)23% (n=11)
          “I like to think of my patients not just as clinical cases, I think I do this every day. Sure, writing is another thing, but I'm still motivated”
          Writing the parallel chart …
           Was beneficial and liberating38% (n=43)12% (n=15)38% (n=12)
          “It was liberating, almost therapeutic”
          “Satisfied and accomplished”
          “Interested in applying a methodology that I have not used to date”
          “The narration has put me at the patient level, a parallel level, but with meeting points. It does not exist in geometry but in reality, it does!”
           Made me reflect33% (n=38)31% (n=39)13% (n=4)
          “By concentrating on the patient's experience, the doctor is obliged to expose himself as a person, sympathetic with the subject visited, because he is subject to the same psycho-social and affective dynamics”
          “It caused me not to run, but to think and rethink, he brought back the focus on the man, rather than on the patient”
           Made me feel complete23% (n=26)10% (n=13)38% (n=12)
          “A useful moment of reflection. Often in the hospital you feel a machine that has to “crunch” visits. Thanks to writing the parallel charts I felt human once again”
          “I felt helpful and positive, happy with my work and the relationship I can build with several patients. Watching such situations makes us realise how important the emotional aspects of our profession are and I hope that other colleagues who are less interested in this aspect will see the improvements that this approach can make to people's lifes”
           Was demanding6% (n=7)5% (n=6)13% (n=4)
          “I have struggled a bit to detach myself from the scientific methodology I'd been using for years, but it was a great challenge and I hope I can do a decent job”
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        Narrative medicine educational project to improve the care of patients with chronic obstructive pulmonary disease
        Antonietta Cappuccio, Alessandro Sanduzzi Zamparelli, Massimo Verga, Stefano Nardini, Alessandro Policreti, Pasquale Alberto Porpiglia, Silvia Napolitano, Maria Giulia Marini
        ERJ Open Research Apr 2018, 4 (2) 00155-2017; DOI: 10.1183/23120541.00155-2017

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        Narrative medicine educational project to improve the care of patients with chronic obstructive pulmonary disease
        Antonietta Cappuccio, Alessandro Sanduzzi Zamparelli, Massimo Verga, Stefano Nardini, Alessandro Policreti, Pasquale Alberto Porpiglia, Silvia Napolitano, Maria Giulia Marini
        ERJ Open Research Apr 2018, 4 (2) 00155-2017; DOI: 10.1183/23120541.00155-2017
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