Encounter between stories and evidence for a health care system to

be transformedbe transformed

Maria Giulia Marini

Synthesis Synthesis Synthesis Synthesis

The narrative medicineThe tools to study care pathwaysThe tools of narrative medicineThree case studiesThree case studiesConclusions for progress

Working out the difference between science and the humanities is long been a fashion and is now boring.

The method of solving problems, the method of conjectures and refutations is practiced by both.

It’s practiced in the restoration of a damaged text as in the construction of a theory of radioactivity.

Karl PopperKarl PopperKarl PopperKarl Popper

A first definition of narrative medicineA first definition of narrative medicineA first definition of narrative medicineA first definition of narrative medicineIn 1999, T. Greenhalgh and B. Hurtwitz of King's College, published

an article on the definition of narrative based medicine.

With this definition it is described what happens between the health professional and the patient from the collection of information about events before the disease, how the disease information about events before the disease, how the disease has occurred, with attention to psychological, social and ontological.

Columbia University has coined a training program whose title eliminates any rhetoric "on the possible alternative approach to the narrative in health care": the science of narrative medicine.

Undo edits

“Narrative Medicine fortifies clinical practice with the narrative competence to recognize, absorb, metabolize, interpret, and be moved by the stories of illness:… helps doctors, nurses, social workers, and therapists to improve the effectiveness of care by improve the effectiveness of care by developing the capacity for attention, reflection, representation, and affiliation with patients and colleaguespatients and colleaguespatients and colleaguespatients and colleagues.”

Rita CharonRita CharonRita CharonRita CharonUniversity of ColumbiaUniversity of ColumbiaUniversity of ColumbiaUniversity of Columbia

But beyond the value of "empathetic" listeniong But beyond the value of "empathetic" listeniong But beyond the value of "empathetic" listeniong But beyond the value of "empathetic" listeniong of the individual patient, narrative medicine can of the individual patient, narrative medicine can of the individual patient, narrative medicine can of the individual patient, narrative medicine can

have an organizational value? have an organizational value? have an organizational value? have an organizational value? Can it help to redesign the social and clinical care path

passing by a singular vision (the case) in the plural (occurrences in populations?)

Can it help produce quality in health and social care?

Can it help to fight waste of not appropriateness?

The main management tools to study the The main management tools to study the The main management tools to study the The main management tools to study the pathways of care for patientspathways of care for patientspathways of care for patientspathways of care for patients

• Structured or semi-structured questionnaires (usually with a low redemption today, though with great expenditure of energy due to an overcrowding of surveys).

• The flow chart (care maps) - designed by which roles? • The flow chart (care maps) - designed by which roles? Doctors, engineers streamline those expressed by health professionals? And 'provided the voice of patients?

• The medical records, which focus on the clinical history with a legal and administrative and databases

Which tools in narrative medicine?Which tools in narrative medicine?Which tools in narrative medicine?Which tools in narrative medicine?

• The observation, listening and transcribing the stories of patients by health professionals

• Shared and consensual reading of the diaries of patients and professionals

• The parallel chart (a place where there are all the • The parallel chart (a place where there are all the other information / moods / thoughts which are not provided in a medical record - grandmother ... a disabled person who can no longer play with her grandchildren and cooking, a dying girl who aims to get to graduate ...)

3 concrete cases of implementation of 3 concrete cases of implementation of 3 concrete cases of implementation of 3 concrete cases of implementation of narrative medicine narrative medicine narrative medicine narrative medicine

• The Odysseys of people with spinal cord injury

Narrated Obesity in Italy: towards a cure

The Unveiling of the inability to communicate the communication of the diagnosis in patients with ALS

The Odysseys of people with spinal cord injury from trauma: The Odysseys of people with spinal cord injury from trauma: The Odysseys of people with spinal cord injury from trauma: The Odysseys of people with spinal cord injury from trauma: in search of bed in the Spinal Unitin search of bed in the Spinal Unitin search of bed in the Spinal Unitin search of bed in the Spinal Unit

The guidelines are clear:Involve three stages: 118 -Trauma Center-Spinal Unit

How many more steps in searchthe bed right?Testimonies in 45 freeNorth Central and South whichstarting point was ...before the accident I was ...

The cost of inappropriate admissions The cost of inappropriate admissions The cost of inappropriate admissions The cost of inappropriate admissions collected through the narratives of a sample collected through the narratives of a sample collected through the narratives of a sample collected through the narratives of a sample

populationpopulationpopulationpopulationIn the study of Fondazione ISTUD and INAIL 2010-2011, on a sample of stories heard and transcribed, in 53% of cases of traumatic spinal cord injury there was at least one hospitalization in inappropriate facilities (two in 30% of admissions), for a minimum average of three weeks of admissions), for a minimum average of three weeks of hospitalization, for an average daily cost of 850 Euros in hospital. Data are Valid for North, Central and Southern Italy.If we multiply this rate of inappropriateness to the number of new cases of people with spinal cord injury in Italy, we get a figure of 9,564,922 Euros spent in centers not dedicated to the care expert: it is a waste.

To improve the quality of care of spinal To improve the quality of care of spinal To improve the quality of care of spinal To improve the quality of care of spinal cord injury ...cord injury ...cord injury ...cord injury ...

The spinal unit, as recent ones, are so re-known scenario of care pathways

It should be done a campaign in activation of spinal It should be done a campaign in activation of spinal positioning of the units as centers dedicated to the care that extends beyond the "circle of experts" to reach the other medical specialties

To increase the number of beds in the spinal cord in the Centre South

Research O.N.I.C.E: Obesità Narrata Research O.N.I.C.E: Obesità Narrata Research O.N.I.C.E: Obesità Narrata Research O.N.I.C.E: Obesità Narrata in Italia: verso una Cura Efficace in Italia: verso una Cura Efficace in Italia: verso una Cura Efficace in Italia: verso una Cura Efficace

Obese people (149 stories of obese, lose weight or not) to tell, through the writing of a story semi-structured (from once upon a time a boy/ a girl ... to this day), how they heard and how they lived during this day), how they heard and how they lived during the different stages of obesity, related to different periods of his life and the journey of care.Next to them, the experiential narratives of 25 health professionals who take care of obese people daily encountered in their professional care.

Some of the results…Some of the results…Some of the results…Some of the results…

100 stories were expected of severely obese or severely obese former in two months (March-May 2011) collected through the website of Obese Friends: 149 stories have arrived, all analyzed, 92% women, mean age 38 years.women, mean age 38 years.Great curiosity and interest by the 25 health professionals to dedicate their time in interviews to understand why they chose to treat obese people and what could have been put in place to combat this condition.

“The unbearable weightness of being ““The unbearable weightness of being ““The unbearable weightness of being ““The unbearable weightness of being “The stories of people who are obese are mainly narratives in which the fundamental question that emerges is to rediscover the ability to love ourselves in a meaningful way: through the pathways of care, the fight against an ancient sense of guilt and inadequacy that led these people to precisely weight yourself against the outside environment.against the outside environment.

The lives of these people are "solid" as their bodies: solid relationships or marriage living together, usually a permanent job won, firm partners with them : apparently it seems that everything is fine ...But one day, in one hundred forty-nine stories in our collection, comes the upsetting of the balance

The breakThe breakThe breakThe break----point in the “unbearable lightness of point in the “unbearable lightness of point in the “unbearable lightness of point in the “unbearable lightness of being” being” being” being”

It is fostered by an actor which is often forgotten and neglected: the body that speaks with its signals in shortness of breath, heaviness in the lift off the ground, not being able to cross your legs, palpitations and shortness of breath to hear, in the joints of the legs and increasingly sore feet.And 'the body, when the weight has become "untenable" screams his illness.screams his illness.And finally the moment of true awakening of the obese person: there is no incentive to be long-lasting aesthetic, but it is necessary, feels a pain to decide who is seriously time for a change "lifestyle". And this is not a story, a case report, but a typical occurrence in the stories of these people. An event that continues to repeat itself.

Between stories and digitsBetween stories and digitsBetween stories and digitsBetween stories and digitsOver the years countless diets began including

twice with the support of anorectic drugs ....Also visited an infinite number of varied diet experts: doctors, nutritionists, acupuncturists, beauty therapists, self-proclaimed experts ...Over the years, started countless diets including the Atkins diet points, diet quan ...Over the years, started countless diets including the Atkins diet points, diet quan ...Also visited a number of experts varied diets: nutritionists, homeopaths, physicians, endocrinologists, gynecologists, psychologists…

Between stories and numbersBetween stories and numbersBetween stories and numbersBetween stories and numbers

There are 65 stories of people who visit more than 10 experts to get up to a "priceless": 44% of the protagonists. The treatment began at the age of adolescence and forward until now.forward until now.

Supervising the project ONICE: King's College, Center for Humanities in Health; London and Centro Eric Berne, Milan

Conclusions of ONICE researchConclusions of ONICE researchConclusions of ONICE researchConclusions of ONICE research

Professionals agree that there is no a real education about a healthy lifestyle, addressed to families, schools, media ... removing the prejudice that it is only a cosmetic problem, but that is a matter of health.They have a full perception of the disease in its complexity (physical, social and psychological), which impacts not only on (physical, social and psychological), which impacts not only on the quality of life, but also, powerfully, its quantity in terms of life expectancy.Emerges a clear need for a team of a skilled and aware team in multidisciplinary care, skilled and aware, in order to achieve lasting results,

The travel for confirmation of the diagnosis for The travel for confirmation of the diagnosis for The travel for confirmation of the diagnosis for The travel for confirmation of the diagnosis for people with Amyotrophic Lateral Sclerosispeople with Amyotrophic Lateral Sclerosispeople with Amyotrophic Lateral Sclerosispeople with Amyotrophic Lateral Sclerosis

The starting point of the story to people with ALS has been ..."When did you notice that something was wrong ?...."

From this origin stories of the people interviewed full of and written records of visits, diagnostic tests, second visits, surveys ... until other people have told us how they were given notice of the confirmation of diagnosis ...

“The communication was sent to me by mail from the doctor who had made thediagnosis. Absolutely not during the visit gave me great directions. It was very far fromus to imagine that it was a disease like this. “

"I was told not to do long-term programs.“

"In the room I was told directly by using the word motor neuron. Not even 20 minuteslater he was admitted to a person next to me who had motor neurone disease and

Could be better this critical moment in Could be better this critical moment in Could be better this critical moment in Could be better this critical moment in co0mmunicating?co0mmunicating?co0mmunicating?co0mmunicating?

later he was admitted to a person next to me who had motor neurone disease andcould not move anymore.

"My wife was informed that he had motor neurone disease. I ask for a meeting withthe doctor to find out what it was and he informed me that ALS is a worst thing. Iasked how I should behave in practice what I had done came home and handed me anewspaper saying to document. The third time I ask for further explanation he tells methat medicine can do nothing, it remains only to go to Lourdes. "

"When I said I have motor neuron disease suspicious because I was told not to gohome and see what it is.“

For an analysis of narrative and the unveiling of For an analysis of narrative and the unveiling of For an analysis of narrative and the unveiling of For an analysis of narrative and the unveiling of a problem will have to follow an intervention to a problem will have to follow an intervention to a problem will have to follow an intervention to a problem will have to follow an intervention to

improveimproveimproveimprove

• The doctors had no perception of the problem emerged with the patients, but felt that the communication was sufficiently good communication was sufficiently good

• For physicians and teams who have the task of giving the news of ALS patients is preparing a checklist of good practice and a video communication with a practice to be used in everyday communication.

Conclusions to progressConclusions to progressConclusions to progressConclusions to progress

• Narration between linearity and Narration between linearity and Narration between linearity and Narration between linearity and circularitycircularitycircularitycircularity

• Among real and virtual spacesAmong real and virtual spacesAmong real and virtual spacesAmong real and virtual spaces

• Narrations and sustainability Narrations and sustainability Narrations and sustainability Narrations and sustainability

The narratives in health care are not linear but twisted, tangled. Are Sense and Sensibility with unrolled for them to understand, measure and understand, measure and then use.

On the other hand, the calculus through the tangents (derivatives) is able to accurately measure the areas of non-linear paths.

Among real and virtual spacesAmong real and virtual spacesAmong real and virtual spacesAmong real and virtual spacesThe cost containment measures will ensure that in future we will move from a primary interaction between health professional and patient movement in real space to virtual space.Web 2.0 - social networks - and the communities of physicians online, online professional and patient physicians online, online professional and patient organizations are spreading inexorably. Sometimes they are more humanized technology than some real health care settings.Patients online gladly leave their stories, material to be studied, developed, and returned to the scientific community, decision-makers, patients and citizens themselves to transform health care.

Narrative medicine yields to sustainabilityNarrative medicine yields to sustainabilityNarrative medicine yields to sustainabilityNarrative medicine yields to sustainabilityThrough listening to the clean, conditioned by early assumptions, the reflection on the said / unsaid, the written / unwritten, driving research to understand the flow of the course of treatment with a subjective camera - the views of patient - you can fathom how they are erratic paths, and quantify waste in order to transform the way.patient - you can fathom how they are erratic paths, and quantify waste in order to transform the way.Every wrong step is an anomaly of an unsustainable waste quality and health. Each relationship discontinued because of lack of humanity and responsibility between therapist and patient is an anomaly in the quality and unsustainable waste.

The so-called scientific knowledge is not knowledge, since it consists solely of conjecture and hypothesis - even if some assumptions that have crossed the crossfire assumptions that have crossed the crossfire of ingenious controls.But we do not know.We try only a guess.

Karl Popper