Narrative medicine to improve the management and quality of life of patients with COPD: the first experience applying parallel chart in Italy

Figures & data

Table

Smoking (empathetic help) 28%	Smoking (functional threat) 35%
“We talked a lot about what cigarettes meant to him and especially the possible fear of having to quit because of health problems – which were becoming important.” “I’ve prescribed him the same therapy but have changed the trade name of the drug and, instead of imposing the care in an authoritarian manner, I tried to use a more friendly and reassuring approach, which eventually led him to promise a reduction of cigarettes to 10 per day.”	“I suggest the patient have periodic checkups but above all to hold to the intention of abstaining from smoking.” The answer: “Doctor I’m sure, after hearing what you told me, ie, that you do not assist smokers, I would not have had the courage to come return to visit, now or never.” “Several times in my life as a doctor, I thought back to that moment: I do not know if it was me being very convincing, or if he was ready and he just needed a confirmation of what he already knew, that smoke had ruined his lungs.”
Smoking (nonfunctional threat) 37%
“Are you still smoking!? Don’t you understand that if you keep doing like this, you’ll die next time? And who will take care of your granddaughter?” I said, sounding a bit threatening. “What should I tell you Doctor? I can’t … I enjoy smoking too much to quit!! And then … among my bridge companions there is one who smokes more than me and is 79 years old! So … why should everything come upon me?” “For him smoking was unavoidable, he was not going to stop and explaining to him what could be the consequences of this choice served no purpose. He knew it very well and really did not care!”

Table

Therapies

“The new association, would have allowed the bronchodilatation of the battered survivor alveoli of M., similar to a hot air balloon that rises to the sun after winning the force of gravity. […] She proudly told me her favorite moments: the time spent with her baby, the two weekly appointments at the Anti-Smoking Centre that allowed her to consume as few as three cigarettes a day, and then the minute, upon awakening, after taking her inhalation therapy, a harbinger of new energy, longer breaths of pleasure in climbing the stairs without difficulty.” “Today curing this person has become easy: every time I see him in the clinic we speak more of our problems than of his disease which is well controlled by treatment. Eventually, this led us in recent years to established a relationship of friendship.” “It has unleashed a backlash so annoying that I thought was not worth it to engage that much given the behavior and her feeling of frustration was moving to me because while I was talking about health, therapeutic output, percentage improvements in vital parameters, she replied she was angry because it was almost Christmas time and she did not know how to go to buy gifts for her girlfriends.” “The patient was oriented toward taking medication as needed, with therapeutic overlap between drugs prescribed by different doctors, arbitrary suspension, integrations with fancy aerosol of cortisone and mucolytic.”

Table

Activities

“The husband takes care of everything, treating her like a porcelain doll.” “She noticed that she could go shopping with less fatigue. She was taking her grandchildren to school and each time she felt happiness – as if it were the first time. Though, she had stopped traveling.” “He was a former heavy smoker, with a poor quality of life that prevented him to devote himself to his ‘favorite’ hobbies: the care of his garden and walking. […] R.E. has not had exacerbations for a long time, he completes his gardening independently and above all he breathes without effort.” “When she came back one of the last times I saw her smile … she was finally able to take a walk to the shopping streets without dyspnea; she told me that for some time she had been a normal person …” “The first time the patient had traveled with oxygen, he had felt uncomfortable; but then he saw other people (especially foreigners, he had noticed) travel despite the need for oxygen, wheelchairs, walkers or other and he had calmed down.”

Table

Family relationship

“They did anything to not make him feel like a burden, even if he had to walk slowly or stop because of breathlessness.” “Everyone scolded her because she continued smoking.” “He had recently moved to his daughter’s house to help her, as she had just separated from her husband, and was without a steady job, she would have to take care of three children by herself.” “Slowly, arm in arm with her husband (who always accompanies her) the lady enters the ambulatory clinic in a very serene way.” “I remember the first time he came into the studio with his wife, who began to talk extensively about all her husband’s problems while he was sitting in silence. After about 30 minutes of monologue I got up and I asked the lady to sit on the couch for the visit. She answered, ‘but the sufferer is my husband,’ and I still remember that he smiled.”

Table

From the patient, I’m learning that …

“I’d like to be towards others as cheerful as he was for me.” “I wish I could avoid requesting clinical tests that have the only aim of reassuring the patient, since they belong to defensive medicine, and are potentially dangerous, such as in the case of imaging diagnostics.” “Listening is the first step to trust … and trust towards the physician is the piece of the puzzle that can allow a cure.” “Every case has its peculiarities. More complex cases are certainly the most challenging. Exceptional cases require we use unconventional approaches.” “[Patient name initial] taught me how much strength there is in despair, how much courage in continuing to live, despite there being many, many reasons to let go.”

The experience of writing

“The parallel chart is the only way that I could have expressed all the humanity of a relationship between people that goes far beyond the simple doctor–patient contact.” “Pleasantly surprised … I felt closer to my patients.” “I felt like someone who needs to communicate their results to others and succeeded in doing so.” “I felt frustrated in realizing that the solution to an acute problem was only a fraction of what the patient would have needed. However, having told his story I also felt relieved: although the story of a man like many others – his will not be lost.” “I felt the importance of my choices and my behavior on others and the influence of others on my choices and my behaviors.”

Table 1 Personal details and profile of the 50 physicians involved in the study

Physician characteristics	Physician (N=50)
Women, % (n)	42 (21)
Men, % (n)	58 (29)
Mean age	50 (min: 34, max: 65)
Professional years	17 (min: 1, max: 35)
Region of origin, % (n)
Northern Italy	40 (20)
Central Italy	24 (12)
Southern Italy	36 (18)
Work setting, % (n)
Working in a hospital	50 (25)
Working in a local public health care facility	38 (19)
Working in a private clinic	8 (4)
Working as private practitioner	4 (2)
Specialization, % (n)
Respiratory diseases	76 (38)
Internal medicine	12 (6)
Others	12 (6)
Reason for choosing this specialization, % (n)
Passion	68 (34)
Direct experience	14 (7)
Opportunity	12 (6)
Random	6 (3)

Table 2 Personal details and profile of the 243 patients described in the parallel charts

Patients’ characteristics	Patients (N=243), % (n)
Women	32 (78)
Men	68 (167)
Age
<54	7 (17)
55–64	22 (54)
65–74	38 (92)
75–84	26 (63)
≥85	7 (17)
Marital status
Married	70 (140)
Widow/widower	15 (30)
Single	9 (18)
Divorced	6 (13)
Family status
Children and grandchildren	57 (138)
Children	22 (53)
Nephews/nieces	7 (17)
No children or nephews/nieces	14 (34)
Education
Primary school	18 (43)
Junior high school	28 (68)
High school	37 (90)
Bachelor’s/Master’s	17 (41)
Employment status
Employed	12 (29)
Self-employed	12 (29)
Retired	64 (155)
Not working	12 (30)
Smoking habits
Nonsmoker	51 (124)
Ex-smoker	10 (24)
Smoker at the first visit	39 (95)

Table 3 Onset of COPD and staging according to the functional classification of GOLD

Characteristics of the disease	Patients (N=211)
Mean age at diagnosis	61 (min: 18, max: 85)
Years living with COPD	9 (min: 0, max: 36)
Years treated by the current physician	3.8 (min: 0, max: 20)
Gold I, % (n)	3 (6)
Gold II, % (n)	32 (68)
Gold III, % (n)	37 (78)
Gold IV, % (n)	28 (59)

Abbreviation: GOLD, Global Initiative for Chronic Obstructive Lung Disease.

Table 4 Classification of the parallel charts among disease, illness, and sickness

Parallel charts (N=241)	Illness	Illness and disease	Disease	Sickness
Whole narrative, % (n)	71 (171)	11 (26)	18 (43)	22 (53)
Top 100 words used for the description of the first encounter, %	43	NA	57	NA
Top 100 words used for the description of the relationship today, %	69	NA	31	NA

Abbreviation: NA, not applicable.

Table 5 Classification of the type of relationship established by physicians

Type of relationship	Doctor–patient relationship (N=243), % (n)
Stereotyping	20 (49)
Active listening	80 (194)

Table 6 Relations with people with COPD “today” in the narratives, analyzed according to the age at diagnosis and their smoking habits

Patients’ characteristics	Easy, % (n)	Evolving from difficult to easy, % (n)	Remained difficult, % (n)
Overall narratives	51 (124)	26 (63)	23 (54)
Patient age at diagnosis
<45	22 (2)	44 (4)	33 (3)
45–54	40 (19)	26 (12)	34 (16)
55–64	49 (38)	21 (16)	31 (24)
65–74	62 (34)	27 (15)	11 (6)
75–85	80 (12)	20 (3)	–
Smoking habits
Smoker	15 (5)	12 (4)	74 (25)
Nonsmoker or ex-smoker	62 (90)	24 (35)	14 (20)
Stopped smoking after the first visit	47 (29)	39 (24)	15 (9)

Table 7 Evolution of relationships (from difficult to easy, or difficult throughout), stratified by language classifications and by physician age

Characteristics related to physicians	Evolving from difficult to easy, % (n)	Remained difficult, % (n)
Language
Disease	33 (6)	67 (12)
Disease and illness	69 (11)	31 (5)
Illness	55 (46)	45 (37)
Physicians’ age
<40	33 (8)	67 (16)
40–50	58 (19)	42 (14)
>50	60 (36)	40 (24)

Figure 1 Effectiveness of therapies (on the left) and adherence to treatment (on the right) as reported within the narratives according to the difficulty of the relationship.

Figure 2 Restoration of activities according to the difficulty of the relationship.