What is the Humanisation of Care?
The concept of Humanisation of Care could be generally interpreted in several subjective ways through different keys of understanding (religious, literary, psychological, philosophic, sociologic…), sometimes in contrast each other and hardly translated in scientific terms.
The Humanisation of care is considered an oxymoron by someone since the humanization must be inherent in the medical practice, but it is not a foregone conclusion that it is widely present in who need for care.
In medical research, the most suitable perspective of potential relapses of the Humanisation maybe is the Systemic one through a Multilevel Governance strategy.
Concerning the word “Humanisation”, the Treccani Vocabulary of Italian Language distinguishes three possible definitions for the term which can lead to different perspectives and keys of understanding of the same concept, opening to three field of applications.
- The Humanisation of the other (eg. through the listening to the other)
- The Humanisation of themselves (eg. through Education)
- Being Humanised (eg. through the Governance)
Since its peculiarity, we have to assume that Medicine – that belongs from different sciences and acts to the human fields – would be placed in the category of Complex Systems where the borderline between sureness and doubts is often blurred, timely variable and easily influenced by several factors (Complex Decision Making). Consequently, Medicine needs continuous progression through scientific research, for technological and biological aspects (bio-metric sciences) but connected with the Medical Humanities.
In a systemic perspective, the crux of the matter around the complexity of the practical decisions must be the Relation, as a synthesis of different knowledges on one hand and different anticipations on the other hand, between the doctor, the patients, other professionals, caregivers, institutions and society (Stakeholders).
In such a complex perspective, the Humanisation of Medicine (H. O. M.), as derived from the description above, could be actually translated in a practical tool and a Project Work founded on Multilevel Governance.
AGENAS (the Italian Agency of Education for Regional Healthcare Service), that is the authority for the Healthcare Professionals Education, has already used a complex survey (in 144 items) to measure the appropriateness of several healthcare realities in terms of Humanisation of Medicine.
As written, if we suppose to apply such a perspective in the Humanisation of Medicine, a practical synthesis focused on care Relation could be carried out; in this way the Relation could be not only “qualifying” but also “quantified”, and needs a tool to be reproducible measured, applicable in every context to every stakeholder (patient, family members, professionals).The hypothesis is of the Applied Narrative Medicine as a possible measuring tool that could be a validated marker of the Quality of care.
In Narrative Medicine, through he Kleinman’s methodology, it is possible yet to “weight” the domination of three aspects into narratives (disease, illness, and sickness) on which applying a study of impact. In particular, the first step to work in this direction must begin with the listening phase (first definition of Humanisation from the vocabulary) into the relation of care, as part of complex systemic reality connected with several other relations.
The semi-structured interview below, to propose at the Narrative Clinic encounter, has to be undergone to professionals, families, and patients and could be considered a validated tool to act a first listening measuring of who has already had a benefit (or not), as stakeholders. In order to standardize data collection, we consider the choice of specific field to study – as the Palliative Care – as usefull when the attention to listening and Humanisation of care have already been part of work methodology, despite not always the efficacy is evaluated.
Towards metrics in Narrative Medicine
In narrative medicine, several keys of understanding dominate in the narratives between healthcare professionals and patients: The most universal one was carried out by Arthur Kleinman who distinguished the way to express the health/disease binomial in the following category: disease (as consequences of a mechanic cause), illness (the coexistence with the disease and the consequences on the daily life) and sickness (the patients’ inclusion or exclusion to the social life).
Another diffuse key of understanding is the Arthur Frank’s one who compares the modality of dealing with the disease: Chaos is when there’s no patients’ awareness; Restitution is when the therapy adherence is at the maximum level, waiting for the restitution of the health; Quest is referring to what patient has learned from experiences the disease and how new lifestyle they have implemented after the loss of function of their body or mind.
Other keys of understanding exist: the Bury’s one reads if and how the moral judgments are in narratives; the Plutchik’s one analyses the emotions felt; and the Launers’one tries to understand the narrative dynamism, from the observation that a stable story is problematic since it marks a not evolving doctor-patient relationships.
Reasoning to the thousands of professionals’ written text and telling, the need of narrative medicine way of understanding maybe emerges – both during the daily medical practice, orally, and through written tools as the parallel charts or patients’ narratives -. Narrative Medicine is more simple, more radical and basic; it belongs from the natural semantic metalanguage, those universal meanings common among all the languages worldwide: to say, to feel, words, to want, things, I, you, body.
The most reported thing by patients is whether the professional has listened or not to the person, whether they could have had the possibility to speak, and whether doctors wanted them to do the therapies at all costs. From literature, it is known that the healthcare professional usually speaks more than they listen to, often not showing that curiosity towards the person (and not only towards the disease), that is the base of an efficacy relation of care. Also because patients actually “inhabit” their bodies, they know it perfectly, and beyond their bodies, they know their desire on living their lives. According to patients, the most loved and trusty professionals are not only those more technically competent, but also those that listen to patient’s needs and let them the appropriate time to metabolise information, which is important not only to the ill person (good but common thing), but also to professionals themselves (and this is the innovative thing), in order to have more time for shared decision making and for developing that Governance system described above. Indeed, not only the patient has the need for more time reflecting on things to do, but also healthcare professionals need time to understand the direction to bring, and it could happen when they actually collect the person’s complete story and not only a micro-clinic anamnesis.
In this evidence-based world every action needs a metric, otherwise, it becomes questionable and self-referential: The same methodology could be applied to the narrative medicine and narrative healthcare (narrative healthcare’ is referred to every other professional, different from the doctor, who applies the narrative approach, such as nurses, physiotherapists, social assistance…). Maybe, the moment of measuring the quality of the applied narrative approach during encounters is finally arrived, not with the complex categorization described above, but on the base of the already cited simple markers of the listening skill.
So, we suggest to collect both the voices involved in the relation of care (also more than two voices), at the end of the Clinic Narrative Encounter or at the end of a pathway with the patient they are following, also with a narrative approach: a minimal double semi-structured interview to diffuse among patients could be structured in the following way:
For the doctor or other health care professional:
Age of doctor … Gender … Social status ….
Age of patient… Gender… Social status….
Disease… onset…..
Other considerations…..
1) Have I listened to the patient? From 1 (not at all) to 7 (completely);
2) Did I interrupt the patient? From 1 (not at all) to 7 (completely)
3) Did the patient interrupt me? From 1 (not at all) to 7 (completely)
4) Did he/she tell me about the disease? From 1 (not at all) to 7 (completely)
5) Did I mention the disease? From 1 (not at all) to 7 (completely)
6) Have he/she told me about his/her life plans? From 1 (not at all) to 7 (completely)
7) Have I talked about the patient’s life plans? From 1 (not at all) to 7 (completely)
8) Did I have to impose myself? From 1 (not at all) to 7 (completely)
9) Did the patient have to impose himself? From 1 (not at all) to 7 (completely)
10) Have we made any decisions together? From 1 (not at all) to 7 (completely)
11) All in all, have we talked to each other, listened to each other and understood each other? From 1 (not at all) to 7 (completely)
12) How did I feel during the visit/visits? From 1 (very bad) to 7 (really good)
Comment on moments of interruption, imposition, and shared decision…
For the patient:
Age of the patient… Gender… Social Status…
Disease… onset…..
Other considerations……..
1) Have I listened to the treating person (doctor or other care professional)? From 1 (not at all) to 7 (completely)
2) Did I interrupt the doctor? From 1 (not at all) to 7 (completely)
3) Did he interrupt me? From 1 (not at all) to 7 (completely)
4) Did he tell me about the disease? From 1 (not at all) to 7 (completely)
5) Did I mention my illness? From 1 (not at all) to 7 (completely)
6) Have I talked about my life projects? From 1 (not at all) to 7 (completely)
7) Does he have any plans for my life? From 1 (not at all) to 7 (completely)
8) Did I have to impose myself? From 1 (not at all) to 7 (completely)
9) Did the doctor have to impose himself? From 1 (not at all) to 7 (completely)
10) Have we made any decisions together? From 1 (not at all) to 7 (completely)
11) All in all, have we talked to each other, listened to each other and understood each other? From 1 (not at all) to 7 (completely)
12) How did I feel during the visit/visits? From 1 (very bad) to 7 (really good)
Comment on moments of interruption, imposition, and shared decision…
This brief interview could be done in the preferred moment, and the informed consent could be proposed to patients, to investigate also their perspective.
Beginning with a simple listening tool, distinguishing the moment for speaking about the disease from the moment in which speaking about projects of life, could be usefull to understand the importance of listening not only the anamnesis but also the patients’ contextual health biography.
What about you, readers? Do you think measuring the listening skills is useful? We are waiting for your comments and experiences.
Dr. Salvatore Giorgio Bardellini
Specialista in Anestesia – Rianimazione;
Medico Palliativista Responsabile UCP-Dom;
Direttore Sanitario CSAP – Cooperativa Servizi Alla Persona – Cooperativa Sociale a r.l.;
ADI ATS Insubria e Città Metropolitana Milano 1;
Sede di Cardano al Campo (VA) Via Goffredo Mameli,1
Maria Giulia Marini
Scientific Director, Healthcare Area of ISTUD Foundation, Milan, Italy
