Encounter between stories and evidence for a health care system to be transformed
Encounter betweenstories and evidence fora health care system to be transformed Maria Giulia Marini
Synthesis The narrative medicine The tools to study care pathways The tools of narrative medicine Three case studies Conclusions 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 Popper
A first definition of narrative medicineIn 1999, T. Greenhalgh and B. Hurtwitz of Kings 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 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 practicewith the narrative competence to recognize,absorb, metabolize, interpret, and be movedby the stories of illness:… helps doctors,nurses, social workers, and therapists toimprove the effectiveness of care bydeveloping the capacity for attention,reflection, representation, and affiliation withpatients and colleagues.” colleagues Rita Charon University of Columbia
But beyond the value of "empathetic" listeniongof the individual patient, narrative medicine can 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 pathways 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? 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?• 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 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 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: in search of bed in the Spinal Unit The guidelines are clear: Involve three stages: 118 - Trauma Center-Spinal Unit How many more steps in search the bed right? Testimonies in 45 free North Central and South which starting point was ... before the accident I was ...
The cost of inappropriate admissionscollected through the narratives of a sample populationIn the study of Fondazione ISTUD and INAIL 2010-2011, ona sample of stories heard and transcribed, in 53% of casesof traumatic spinal cord injury there was at least onehospitalization in inappropriate facilities (two in 30% ofadmissions), for a minimum average of three weeks ofhospitalization, for an average daily cost of 850 Euros inhospital. Data are Valid for North, Central and SouthernItaly.If we multiply this rate of inappropriateness to the number ofnew cases of people with spinal cord injury in Italy, we get afigure of 9,564,922 Euros spent in centers not dedicated tothe care expert: it is a waste.
To improve the quality of care of spinal cord injury ... The spinal unit, as recent ones, are so re-known scenario of care pathwaysIt 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 specialtiesTo increase the number of beds in the spinal cord in the Centre South
Research O.N.I.C.E: Obesità Narrata in Italia: verso una Cura EfficaceObese people (149 stories of obese, lose weight ornot) to tell, through the writing of a story semi-structured (from once upon a time a boy/ a girl ... tothis day), how they heard and how they lived duringthe different stages of obesity, related to differentperiods of his life and the journey of care.Next to them, the experiential narratives of 25 healthprofessionals who take care of obese people dailyencountered in their professional care.
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. 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 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. 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
break-The break-point in the “unbearable lightness of 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. 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 digits Over 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 ... Also visited a number of experts varied diets: nutritionists, homeopaths, physicians, endocrinologists, gynecologists, psychologists…
Between stories and numbersThere 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. Supervising the project ONICE: Kings College, Center for Humanities in Health; London and Centro Eric Berne, Milan
Conclusions of ONICE researchProfessionals agree that there is no a real education about ahealthy lifestyle, addressed to families, schools, media ...removing the prejudice that it is only a cosmetic problem, butthat is a matter of health.They have a full perception of the disease in its complexity(physical, social and psychological), which impacts not only onthe quality of life, but also, powerfully, its quantity in terms of lifeexpectancy.Emerges a clear need for a team of a skilled and aware team inmultidisciplinary care, skilled and aware, in order to achievelasting results,
The travel for confirmation of the diagnosis for people with Amyotrophic Lateral SclerosisThe 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 ...
Could be better this critical moment in co0mmunicating?“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 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 ofa problem will have to follow an intervention to improve • The doctors had no perception of the problem emerged with the patients, but felt that the 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 progress • Narration between linearity and circularity • Among real and virtual spaces • Narrations and sustainability
The narratives in healthcare are not linear buttwisted, tangled. AreSense and Sensibility withunrolled for them tounderstand, measure andthen 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 spacesThe cost containment measures will ensure that infuture we will move from a primary interaction betweenhealth professional and patient movement in real spaceto virtual space.Web 2.0 - social networks - and the communities ofphysicians online, online professional and patientorganizations are spreading inexorably. Sometimesthey are more humanized technology than some realhealth care settings.Patients online gladly leave their stories, material to bestudied, developed, and returned to the scientificcommunity, decision-makers, patients and citizensthemselves to transform health care.
Narrative medicine yields to sustainabilityThrough listening to the clean, conditioned by earlyassumptions, the reflection on the said / unsaid, the written /unwritten, driving research to understand the flow of thecourse of treatment with a subjective camera - the views ofpatient - you can fathom how they are erratic paths, andquantify waste in order to transform the way.Every wrong step is an anomaly of an unsustainable wastequality and health. Each relationship discontinued becauseof lack of humanity and responsibility between therapist andpatient is an anomaly in the quality and unsustainable waste.
The so-called scientific knowledge is notknowledge, since it consists solely ofconjecture and hypothesis - even if someassumptions that have crossed the crossfireof ingenious controls.But we do not know.We try only a guess. Karl Popper