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Hope, Evidence Based Medicine and Patients’ Narratives

Hope is a feeling defined as this: “what is wanted by someone, this is can be had –  that things can become good for someone or for people, according to Natural Semantic Metalanguage.

“To think, to feel that Something good can happen in a short time or in a long time”, well, of these words belongs to the Natural Semantic Metalanguage and they do represent a possible pilot for bringing hope to atomic level. Psychologists define this emotion as belonging to all humankind, albeit is very much related to the context of living. Pessimistic parents erode hope and optimism in their children.

Hope might happen both in good and bad cases: the former, when a person who is fit in health, whishes to achieve something more or better in the future, as a good student who has worked hard for his/her exam, or the latter, is a very recurrent situation:  a person has a particular disease or lives in a harmful situation, for instance with no job, in poor condition and wishes that something good can happen or that he/she will do the good things to overcome the current situation.

Optimism is more  related to rational thought, to cognitive process than to a deep inspired emotion. In the philosophical literature, it has been suggested that hope may mediate major life events, as illness and main human relationships, while optimism may mediate more routine or minor problems. Perhaps more hopeful individuals, as compared to optimists, are better able to cope with more serious life events, and are thus less susceptible to illness.

When patients are seriously ill, it is self-evident that hope  becomes a tool for a better coping with the current condition of the disease, as well as optimism which is indicated by Carver being one of the five key factors for coping together with agreableness, openness, responsibility and awareness. While responsibility and awareness are “virtues” empowered in our time, agreableness, the being kind with the others, only recently has been investigated (Ballatt and Campling) and considered as a value to expand since it can produce better health oucomes. As far as openness, this coping factor is quite envisioned in the “quest” attitude by most of all the storytelling genre, based on the Voyage of the Hero, in this case the patient, open to new adventures, precisely the illness.

Optimism can be very much related to hope since has to do with a positive emotion, based on “trust of the future”:as we have seen however, optimism is more related on realistic probabilities that something good may happen whereas hope does not count on probabilities, but on an unconditioned trust.

Clinicians have quite an ambiguous reaction about the possibility of giving or taking out hope to patients.  On one hand, they have to inform clearly patients about their conditions and even about their survival times, and this, in some countries is regulated by laws. This was an achievement by the “civilized society” that restrained the paternalistic model of the doctor, in which the physician was not telling the possible true to the patient, and therefore the patient was not aware – and awareness  is coping factor- of his/her health status. Nowadays the situation is inverted and doctors tend to say everything to the patient: they may take out hope of a longer life, simply by saying, that few months are left to live. Physicians base these information on Evidence Based Medicine (EBM), which deals with probability numbers calculated in clinical trials, and therefore, as most of scientists, provide information based on these probabilities. However, in some cases, we come to know from the narratives of patients – here the utility of narrative medicine, to  discover the unknown – well in these cases of patients  with cancer and metastasis that doctors are somewhat “surprised” when patients live longer than expected.
“Hey, sir, are you still here?” Is a question written in one patient’s narrative asked by a  young doctress to the patient who returns to the hospital. Patient does not reply to her but writes to us: “she wanted to see me buried, already in the grave”.  The sentence pronounced by this physician was considered similar to a capital execution, and it was a cool shower indeed for the patient. In his narratives, he writes that he fell down in depression, with no energy anymore to fight the illness.  He was pushed far away from the coping mode.

Yes, words can be poison or drugs; here, the words of this young lady doctor killed the patient hope.  However, before blaming this deed, let’s try to consider why she, alomg with other doctors,  was so much surprised to see this patient still alive: he was an oddity for the probability scales of EBM. He was like the “Black Swan” of Thaleb, that means the extreme impact of certain kinds of rare and unpredictable events, the outliers related to the humans’ tendency to find simplistic explanations for these events retrospectively. The term black swan comes from a Latin expression: its oldest reference is by the poet Juvenal, that “a good person is as rare as a black swan” (“rara avis in terris nigroque simillima cygno”, 6.165).   It is a statement that describes the impossibility of the existence of a black swan, deriving from the old world presumption that ‘all swans must be white’, because all historical records of swans reported that they had white feathers. No hope for a black swan, however there are many much, especially in the Austral hemisphere. Back to the clinic, the mistake lies in the professional education of some doctors who consider EBM as a dogma, which provides undeniable trues, “all the swans are white”, whereas, EBM can only provide probabilities which do not cover the opacity of the real world. Some patients can be black swans.

Hopefully, there are very well prepared doctors who are able to inform patients about their objective situations, providing them without lying, the probability of a possible healing which belongs to population data: and, further more, they are able also to say that, by the way, hope is always there, because just on the next day a new technology might be discovered, or some other “deus ex machina” can come down from the sky, with the proper solution to the real problem.

Hope is essential for people who are coping with serious and prolonged psychological stress; however hope is not a perpetually self-renewing resource, because it has ups and downs, and therefore it was to be empowered by the system in which the patients live. Family members, carers are called to provide this feeling that has the tremendous power to manage uncertainties, the oddities, and it is proven that it produces better health outcomes
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Narrative medicine is a basic tool to discover if hope, as well as the other coping factor is there, and to build up a trustful and positive relationship with the patients, curers and family members.

The Mayo Clinic published a paper “Positive thinking: stop negative self -talk to reduce stress”. Researchers continue to explore the effects of positive thinking and optimism on health. Health benefits that positive thinking may provide include: Increased life span, lower rates of depression, lower levels of distress, better psychological and physical well-being, better cardiovascular health and reduced risk of death from cardiovascular disease, better coping skills during hardships and times of stress.

Beyond those results, there’s a theory: having a positive outlook enables you to cope better with stressful situations, which reduces the harmful health effects of stress on your body. It’s also thought that positive and optimistic people tend to live healthier lifestyles — they get more physical activity, follow a healthier diet, and don’t smoke or drink alcohol in excess, so they produce more endorphins, and are happier. These data are fresh and they come from Mayo Clinic, one of the most sounded centers for EBM: in this clinic they study the effectiveness of positive thinking (including optimism and hope) in an EBM style.

To conclude in an odd way, but proceeding by analogies, I pick up from my recalls one of my best favourite song on hope. Que Sera Sera, sung by Doris Day in the famous Hitchcock movie, “The man who knew too much”.

 

Here the lyrics of Que Sera Sera, Whatever will be, will be…;

When I was just a little girl
I asked my mother
What will I be
Will I be pretty
Will I be rich
Here’s what she said to me

Que sera, sera
Whatever will be, will be
The future’s not ours to see
Que sera, sera
What will be, will be

When I grew up and fell in love
I asked my sweetheart
What lies ahead
Will we have rainbows
Day after day
Here’s what my sweetheart said

Que sera, sera
Whatever will be, will be
The future’s not ours to see
Que sera, sera
What will be, will be

Now I have Children of my own
They ask their mother
What will I be
Will I be handsome
Will I be rich
I tell them tenderly

Que sera, sera
Whatever will be, will be
The future’s not ours to see
Que sera, sera
What will be, will be
Que Sera, Sera
The positive attitude is teach to children, and transferred by parents as in Que Sera, Sera.

 

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Written by

Epidemiologist and counselor – 30 years of professional life in health care. Classic humanistic background, including the study of Latin and ancient Greek, followed by scientific academic studies, chemistry and pharmacology. First years of career, in private international environment. I worked in medical research, moved to health care organization, getting academic specialization in Epidemiology. Later, in consultancy and health care education. Counselor with transactional analysis orientation. Currently, director of Innovation in Health Care Area of Fondazione ISTUD, an independent not for profit Italian Business School with an humanistic approach acknowledged by the Italian Ministry of Researech.. Active member of the board of Italian Society of Narrative Medicine, tenured professor of Narrative Medicine at Hunimed, Milan, and in 2016, referee for World Health Organization for “Narrative Method in Public Health.” Writer of the book; “Narrative medicine: Bridging the gap between Evidence Based care and Medical Humanities,” edited with Springer and of international publications on narrative medicine in scientific journals. Last book “The Languages of care in narrative medicine: words, space and sounds in the healthcare ecosystem”. Lecturer in different international contexts from Academy to Public and Private Foundations.

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