philippagoranson

[philippagoranson]

Directions of travel for crossroads on health and hagiohygiecynicisms

Ideas on health can be understood as something that is highly misrepresented or has an outlook from a variety of representations. Ideas for wellness seem constantly to be a field of conflicts between discourses. Whys is this so? Is it because it is mostly officially represented by authorities in health care instead of how a population itself understands and knows what wellness is about? Are health and well-being the same thing or not? Is there a difference between well-being and wellness or not? Who actually has the right to say what anybody’s existential well-being is? Spiritual well-being ought to be a voluntary process. Often enough, it is not and this aspect of the problem is about the authoritarian regime on the ideas of wellness and what dominates a certain country of part of the world. Is existential health gender specific? Should health treatments be gender specific? Does existential health need to be either philosophical, sociopolitical or considered a religious matter? Is existential health and wellness a question of landscape and sense of place? Is health perhaps related to intuition? Of course, health is within the communication process concerning the ideas of the mind and soul that exist and where is all this thinking going…? Existential and spiritual health poses the question of personal identity as a continuity of our memory. Is well-being communicated differently in the press in different countries? What are all the books on health actually about? Who are we to believe or dispute? How argue the validity versus the reliability of health? How discuss the truth versus the certainty of health? On what grounds are we to believe or dispute the voices on health or the idea of healthiness in general? Is health a prestigious project? Is wellness a question of perception and/or personality? Is health the meaning of life or just about being absurd on health? What is the relativity of health? When is it more important to understand the layman understanding of health instead of the expert interpretation of health? Is health a power position? Is health about sexiness? Is spiritual health about the air within and the air we breathe? In what way can health be understood in terms of normality or in the sense of not being normal? When is not being normal (disobedient) the most normal thing one can be according to actually being healthy?

Health can be a created value system

The ideologies of the value system/systems on health vary depending on where in the world it has been created, evolved, reevaluated and then altered. Questions of health are among the key issues for the referendum of debates – this is the kind of vocabulary one can encounter on the policy level of health. What is the “direction of travel” at this level concerning health? Health as a human rights perspective. What public or private health is supposed to mean. How can privatization be either good or bad? Health as law and policy affects us differently. The balance between technological innovations and securing the protection of patients and the health systems themselves needs to be communicated better. The idea that “good science” plays an important role in health policy exists. The sad reality is that the idea of “good science” is not a scientifically determined concept. Health is also considered a non-equal relationship to market-based values (e.g. free trade). The need to articulate the values a country or set of countries have concerning health practices and who actually is evaluating and coming to conclusions on what health is supposed to mean to even be useful or trustworthy still seems a bit foggy. What is health in all policies? Questions on health as an implicit or explicit characteristic – an all or nothing approach can be both lost and found at this level of creating a value system.

Health is a political issue

Health exists on all levels: individual, communal and macro-political. Health and life are primarily values expressed by health care professionals and others. Health is about domestic and foreign policy. What is global health diplomacy today? “Diplomats no longer negotiate only with other diplomats but with anyone who has the resources and authority to be involved in negations on a global level. Health is at the forefront of this change. /---/ Governments are often not clear about their motives behind action on health.” (1) Health is as important as wealth and happiness – or at least the means to travel in the right direction toward it. Do political regimes influence individual health? Does an individuals’ political ideology have any influence on their health status?

A question as: “How is success gauged in the field of international health?” reveals a few dimensions on parts of the quest where it commonly is explained as the belief that international health is about the control of diseases and pandemics, how ailments should be prioritized or how violence and injuries can be prevented. The reply is: “No international health actors agree on how these problems should be addressed”. (2) What is anybody even doing in the discourse at all? Anne-Emanuelle Birn has given a developmental portrait of how actors on an international scale have taken shape. She begins by naming the period 1851-1902: Stage of meeting and greeting, the next period 1902 – 1939: Stage if institution-building and further on 1946 – 1970: Stage of bureaucratization and professionalism and profiles the next years 1970 – 1985 as the stage of contested success and from there where we are still seen as today: 1985 – present: Stage of evidence and evaluation. Since the solution is still not here, something both crucial and vital is still missing.

“Health depends on the vanity or falsity of their promises.” (Michel de Montaigne, 1533 - 1592)

The ideas of health can alter over one's own life span. Why does one even start to think about it?

A few days ago, I read my regional newspaper and one spread triggered my questioning on the possibilities of health. The newspaper spread consisted of three articles that together brought several contradicting ideas together regarding society, well-being and bad health. One of the articles in the newspaper claimed education, perseverance and the right to work in a gender equal society creates a healthier country (country being the idea of a healthy population). One other article exposed how women are constantly caught in the middle of everything (work, children, housing, not enough own free time, ill-health due to stress, women’s jobs are not well paid). At least one-third of the population suffers from some kind of anxiety or stress due to life issues. The third piece in the spread then showed that even if people are educated this does not guarantee one will enter the job market. Those who have chosen to study will often be weighed down by their student loans. Educating oneself can be economically contra productive. In school, people are always told to continue to higher education if they want to make sure to get a job at all. The equations are not working out and neither is health in the existential sense of things. Whom are we supposed to be today as opposed to before? How is a person supposed to take care of the self in the midst of all of these concerns and retain health? These examples are perhaps not even big enough if one tries to understand the quest for health on an even bigger scale. These concerns are directed in the first world order - only.

Old mythological storms persist. If we look into the ancient Greek western mythology the state of balance is disturbed by the abduction of the psyche (mind, soul) by the wind. In Greek mythology, it starts as the son of Aestro and Eos abducts Phyché and takes her to his cave; “the wind literally abducts the psyche and leaves it in the hands of love and desire (Eros). /…/Thus, our souls and our minds, ethereal by themselves, are completely at the mercy of the air”. (3) Our psyche is etymologically understood as being “the breath of air” that gives us life, the soul and our understanding. In regards to the idea of health, metaphorically we are not breathing since we have been abducted from our safe haven.

The World Health Organization (WHO) has proclaimed a view of health: “Health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity”. This “view has been criticized as hopelessly utopian and so boundless as to be meaningless. However, it is a better vision against which to compare policy outcomes than one that focuses solely on disease”. (4)

Health promotion according to the WHO standards concern processes: “Health promotion is the process of enabling people to increase control over, and to improve, their health. To reach a state of complete physical, mental and social well-being, an individual or group must be able to identify and to realize aspirations, to satisfy needs, and to change or cope with the environment”. (5)

Health, illness, disease and sickness have a variety of stakeholders to confront. These confrontations can be about prestige or being inferior to different regimes and policies. Or just about not being listened to.

Medicalization is a threat to health

Ivan Illich (1926 – 2002) proclaimed in 1974 that the medical establishment is a major threat to health. Medicalization of health: transforming life issues into medical problems or this can also be described as “a process by which non-medical aspects of human life become considered medical problems”. (6) This is something the culture of healthcare has created and it can be considered healthy to stop and think about what medicine as a phenomenon does to people. Medicalization is constantly disputed within the medical humanities since it is understood as a form of medical imperialism. Healthcare and the healthcare industry are prone to mystifying the conceptualization of health so to give them the control of how people are supposed to understand what health is about. Ivan Illich wanted to warn us and take a closer look at what life is doing to us: “Health, after all, is simply an everyday word that is used to designate the intensity with which individuals cope with their internal status and their environmental status.” (7) Illich’s point on existential health is for people to “drop out and to organize for a less destructive way of life in which they have more control of the environment”. (8)

Ivan Illich concept of healthcare as a nemesis is a reminder to the fact that healthcare regime exceeds in hubris over humility. In Greek mythology, Prometheus was employed by the Zeus to form men from clay and then to inform them on the arts of life and the living. Prometheus went against Zeus will and stole the fire from the heavens. For his pride, Zeus punished him by chaining him to a rock “to suffer everlasting torture”. (9) “Nemesis engineered the God's revenge on Prometheus and on all those mortals who aspired more than mortal power. Thus Nemesis has demanded retribution from every nation of the ancient and modern worlds when hubris exceeds humility.” (10) The analogy is easy to understand in terms of what modern science and healthcare regime are trying to do. Ideas on health are about power relations and relations to power and authority.

Seamus O’Mahony points out how Illich critique of the institutionalizing of everyday life, medical treatments and how the cultural meaning of life, in general, has been turned into something superfluous made people loose traditional ways of dealing with suffering as a part of life. Ivan Illich had a low opinion of doctors (the medical guild) since they are more concerned with their income and status than in the health of their patients. Doctors “tend to gather where the climate is healthy, where the water is clean, and where people are employed and can pay for their services”. Ivan Illich argued for more public support for alpha waves, encounter groups and chiropractic practice. Medicine has become in Illich’s phrase: “a vast monolithic religion”. “Medicalization has continued unchecked, and Illich would have been wryly amused by the invention of new diseases, such as social anxiety disorder (shyness), male-pattern alopecia (baldness), testosterone-deficiency syndrome (old age), and erectile dysfunction (impotence)”. The Lancet Oncology has called modern medicine: a culture of excess.

Conceptually medicalization and overdiagnosis are also debated as being something both similar and at the same time different since they both expand the concept of disease. Medicalisation deals with the sick-role. Overdiagnosis deals with disease. These two concepts, in turn, refer to different kinds of uncertainty: “medicalization is concerned with indeterminacy, while overdiagnosis is concerned with lack of prognostic knowledge”. (13) Bjørn Hofmann argues these concepts are evolving in different directions and creating new problems: “Medicalization is expanding, encompassing the more ‘technical’ aspects of overdiagnosis, while overdiagnosis is becoming more ideologized. Moreover, with new trends in modern medicine, such as P4 (preventive, predictive, personal and participatory) medicine, medicalization will become all encompassing, while overdiagnosis more or less may dissolve. In the end, they may well converge in some total ‘iatrogenization’. In doing so, the concepts may lose their precision and critical sting”. (14) (Iatrogenic: bad outcome induced by physician due to medical treatment or diagnostic procedure).

A broad sociological perspective on health and illness interpret medicalization as being part of how norms and values develop continually develops. Both the definitions of health and illness develop. In this case, medicalization is just seen as a kind of continuum instead of as a dichotomy over medicalization or overdiagnosis or if health and illness even are to be understood as being different. Medicalization and overdiagnosis can be understood as taking place both within and outside of medicine. Medicalization is a multiplayer game (societal factors, institutional rules, stakeholder interests). Overdiagnosis takes place in healthcare and still one has to reflect on how: “Societal developments and values, thus, influence the practice of medicine”. (15)

“True life – false life - illusory symptoms – Diseases are deaths that appear alive.” (Novalis, 1772 - 1801)

Normality as a threat to health

The concept of normality is a threat to health. Normal is understood as something average or standard. The ideas of normality as concepts for diseases aim at working out a levelling into something. A one and same disease can be different in different bodies. Diseases cannot be levelled out entirely. Health cannot be levelled out. Health is more creative than disease.

The concept of normality stems from the Latin normalis – and norma meaning Carpenter Square or T-square. In the 17th century, it meant standing at a right angle, conforming to normal standards. In the 19th century, the concept of normality was transferred to the understanding of human beings due to the new biological paradigm of the time and as part of the industrial revolution: normal person or thing, usually a state or being. In the 20th century, normality was used as a means of evaluating people technically speaking. Life as it is never returns to any state of normality.

Health designated as adaptation is misleading and paternalistic. In doing so, healthcare is a threat to each person’s right to define his or her own health. How can the concept of normality act in accordance to autonomy, not to harm, do good and fairness?

To apply normality is a way of trying to make sense of how societal changes alter different ideal states of being. Ideals of normality alter over time. Normality is not static. Normality is relative to different societies and groups. In times to come, normality will be less of a threat to health.

“hagiohygiecynicism” ( James Joyce, Finnegans Wake)

“ The word ‘hagiohygiecynicism’, which shunts the Greek words for ‘holy’ and for ‘health’ or ‘sanitation’ (Hygieia is the goddess of medicine) onto the philosophy of the Cynica, with its faultfinding contempt for the enjoyments of life.” ( Finn Fordham, Lots of Funs at Finnegans Wake: Unravelling Universals)

Can we agree on conceptualizations of health?

Health and health promotion are, if not concerns for real life, concerns for different ideas and ideologies. What it means to be in good health varies in different contexts due to the differences in specific cultural, political and medical contexts and backgrounds. Health debate offers a variety of conceptualizations. The need to bring order into the chaotic realm of ideas exists. The problem within healthcare and health politics is that it does not help out on health – mostly disease. Is the quest for health about conserving health or how to promote health?

Through what political, cultural and social processes is health transformed into inequality? Inequality in wellness can almost be interpreted in a similar way as to understanding religious differences, creating inequality through a thicker cultural, normative and political content. Health – well-being and wellness are social sciences. Wellness can be politics on a larger scale. The means for their actual solutions is what should be prioritized. Different political regimes, countries, traditions, history, scientific ideologies and their spaces of thought and conspiracies, hierarchies in knowledge processes, differences in voices of authority, media representations and manipulations, and value systems attend to health issues in completely different manners. This, and more influences health and wellness ideals, interpretations and understandings on narrow and broad perspectives and how one can act upon them.

Health promotion is not a contemporary ideal for the 21st century where the ideal is to shift healthcare from a preoccupation with illness to focus on health. This shift is not always based on philosophical concerns. Sometimes it results weigh mostly of cost-benefit ratios. Healthcare is not health care – it is disease care (Healthcare in Swedish is called Health- and disease-care). In the 17th century, health promotion was used as a means to create population policy. In the 18th century, health promotion helped define demographic developments due to economic and military needs. In the 19th century, health promotion was necessary due to industrial developments and different infrastructural needs. In the 20th century, health promotion became more complex where the quest for higher natality led to disturbing ideals concerning the human race.

The following terms create an overview of concern when starting to take a closer look at the challenges when defining health and what these concepts also lack: Health. Health promotion. Health intervention. Public health. Health conference. Healthy living. Environments for health. Disease prevention. Objective health. Workplace health. Foods. Education. Positive Health. Complete health. Health measurement. Health News. Well-being. Ill-health. Health nonsense. Health standards. Exposures. Ecological health. KASAM. Biomedical health. Health diplomacy. Health politics. Health minister. Health policies. Health rituals. Subjective health. Health direction. Health tourism. Intellectual health. Men’s Health. Health abuse. Women’s Health. Health journalist. Health IT. Health research/-er. Health habits. Mobile Health. Happy health. Mindful health. Health problems. Health blogger. Operational health. Nutritional health. Musical Health. Health Data. Health Biometrics. Health networks. Health statistics. E-health. Health app. Health conditions. Health magazine. Avoidable Health Differences. Health provider. Health information. Anthropomorphic Health. Prevention – promotion – campaign. Physical activity. Health vision. Cultural activity. Lifestyle. Life conditions. Family Health. Health leadership. Health vitality. Health informatics. Health behaviour. Health management. Negative Health. Cultural Health. Cognitive health. Health arts. Health alerts. Cooperative health. Existential health. Mineral Health. Palliative care. Health Science. Spiritual health. Health literacy. Health reports. Ayurveda Health. Health field. Health triangle. Healthy housing. Healthy Cities. Health evidence. Empowerment. Economic health. Coping. Health enhancement. The quality of life. Resilience. Health Solutions. Herbalist Health. Compassionate health. Health leader. Holistic Health. Health wearables. Health Fitness. Naturopathic Health. Health equality. Health impact assessment. Religious health. Mental health. Health determinants. Wholistic Health. Health and Leisure. Politics of clean air. Politics of clear water. Politics of clean soil. Holistic. Ambiguous health. Linguistic analysis on health. Human Kinesiology. Philosophical health. Health ethics. Pathways of Health. Environmental Health. Minorities’ Health. Health therapy. Emotional health. Health status. Healthy design. Health intelligence. Health effects. Societal Health. The Science of Happiness. Spiritual Health. Sensual Health. Sexual Health. Social Health. Visualizing Health. Acceptable Health. Health ability. Non-acceptable Health. Disability and health. Sportive Health. Health as a resource. Health assembly. Primitive People’s Health. Health procedure. Functional health. Health experience. Health classification. Health forum. Positive Psychology. Health as a state. Health is caring. Health as a process. Health codes. Health hazard. Health league. Health maintenance. Healthy anger. TCM Perspective (Taking Charge of Your Health, Well-being). Gender health. Rural Health. Health Fellow. Dental Health. Health terminology. Child Health. Adolescent health. Healthy grown ups. Ageing in health. Generational health. Confessional health. Googling health. Health settings. Health Association. Health continuum (death – illness – health – wellness – high-level wellness). Personal satisfaction as health. Health welfare. Health economy. Traditional Chinese Medicine. Slow Medicine Movement. Health Organizations.

One of the first problems in trying to understand the idea of health is the fact that the idea of health is taken for granted. On a global scale, concepts of health differentiate due to linguistic variations and their cultural distinctions and meanings. In English, ideas of health can be about being whole or wholeness or to heal or healing. In Swedish, health can mean happiness. In German, health can mean success. Concepts from the antique culture in Greece use the old word hygieiat, in Greek this means to live well or a good manner of living. Concepts of health in English, German, Latin or Hebrew do not relate the idea of health from disease.

The two dichotomies concerning the study of conceptualization of health concern: the biomedical versus humanities approaches. Health as the idea of a mechanical system where the well functioning body proclaims when one has good health. Health as a biostatic model is when health is the absence of disease. The holistic idea approaches the idea of health as into how a person can achieve good health thanks to being motivated and having a healthy and socially and culturally supportive environment. Mental health is central to what the idea of health is. A psychosomatic idea of health is the absence of disease due to circumstances of life and living conditions. The Ecologic idea of health is a generalization of an environmental approach where health is seen as being in coexistence with the environment. Behavioral direction portrays health as how a person acts in accordance with his or her health. The Homeostatic ideal of health is a holistic psychobiological understanding of health. The theological basic view sees health as a process regarding body, soul and spirit. The salutogenic idea of health is concerned with the relationship between health, stress and coping and how a person has a sense of coherence. Philosophical health is a philosophical style with the goal of restoring us to a condition of philosophical health in regards to how we speak and talk in our everyday lives (traditional styles of doing philosophy usually lead to sickness). Philosophical psychobiology is the portal to health on the brain’s capacities of imagination for creating meaning.

The ideas of health need an open paradigm instead of demarcations. I never said this would be an easy “direction of travel”. Health, as everything else, is an exercise in language and changes according to the context and the needs it addresses. Perhaps the attempt to fix the meaning of health will fail since, like for diagnoses, there is no foundation on which a fixed meaning can be built and it can only be done at the cost of its relevance and usefulness as a diagnosis of health. A diagnosis of health is the perfect contradiction to the idea of health.

The conceptualization of health within The World Health Organization have important milestones in their “direction of travel” from health to wellness.

The ideals of health have altered since 1948. Four touchdowns in the history of WHO are explanatory: 1948 (WHO charter) – 1974 (Lalonde report) – 1986 (Ottowa declaration) – 1991 (Sundsvall declaration). Four main positions have surfaced. Health starts as a state, health is transformed into an experience, and health continues to become ability and is later health is realized as a process. The conceptualizations completely alter the manner in how health is understood and where it comes from (static and goal oriented) to what its “direction of travel” is in understanding how it is transformed to a spiritually dynamic and interactive modus. The concept health can be seen as outdated. Well-being is derived from the changes the concept of health has undertaken. Wellness replaces health and moves this quest into a higher level of understanding of the complexities of the human condition. Wellness and sustainability or wellness as sustainability as steps to come.

Health could be shortened down to the idea of strengthening the self and changing the environment to rid the conceptual confusions at hand. Should we rest at the point of understanding that we all disagree on what health – well-being and wellness are about? I am curious about the next upcoming concept that might help us reach even better clarity and why.

Ideas on health differ in different parts of the world. Health is a reflection of our beliefs. Health is also a reflection of the value systems, in particular societies. Different societies legitimize different combinations on how health works out. Old traditions and new practices can cooperate, depending on if there is a health policy to support it.

Gender inequality in health is on the WHO agenda. It is directed toward both women and men. Women’s disadvantages in social-, economic- and political status make it difficult to protect their health. Women live longer than men and their additional years are often spent in poor health due to gender-based discrimination and medicalization trends. Gender mainstreaming is a concept developed to focus on better empowerment strategies. This addresses how health problems affect women and men of all ages and the group differences. Normalized beliefs and traditions usually just pass on from one generation to another without there ever being any substantial change. The ideal is to be able to create healthier changes and the goal is expressed in the following words:

“Gender mainstreaming is essential to realizing the right to health and it puts people at the center of public health programs and policies.” (16)

Medical speculations on health as a body of knowledge

Western school of thought, philosophy and medicine can start a “direction of travel” on health with Plato and Hippocrates 400 B. C. Health is conceptualized holistically – body and environment need to be in harmony. Galenos 200 B. C. understands health as something fundamental and when one is able. Vesalius (1514 – 1564), the founder of human anatomy, in the 16th century, has a somatic understanding of health. In the 17th century, the idea of health and disease were divided due to the thinking processes of René Descartes (11596 – 1650), Immanuel Kant (1724 – 1804) and Julien Offray de La Mettrie (1709 – 1751). During the 18th and 19th centuries and due to the new biological paradigm of the times in medicine there are a variety of ideals on health.

The Georges Canguilhem (1904 – 1995) book The Normal and the Pathological contains a presentation of medical thinking on the quest of health as a vital force. In the Introduction, the philosopher Michel Foucault (1925 – 1984) summarizes what physician and philosopher of sciences Georges Canguilhem most prosperous traits offer us: a new conceptual understanding of the concept of life as health by reopening philosophy. To understand, life, illness, and health there has to be a sound understanding at several crossroads of thought and research. Michel Foucault points out: “The biologist must grasp what makes life a specific object of knowledge and thereby what makes it such that there are at the heart of living beings because they are living beings, some beings susceptible to knowing, and, in the final analysis, to knowing life itself”. (17)

“Health is a way of tackling existence as one feels that one is not only possessor or bearer but also, if necessary, creator of value, establisher of vital norms.” (18)

Disease is no longer “the anguish for the healthy man”. Disease is from now on the study for a theory of health. The “direction of travel” in Canguilhem’s discourse takes the reader by the hand on different schools of thought on a rhetoric of health as the idea of the living by some European theorists in the 18th, 19th and 20th centuries. Georges Canguilhem exemplifies how different concepts operate “because of their explanatory power and practical value”. (19)

Disease happens to man in order for man to learn not to lose hope. Hope is a means to health. Different kinds of diseases make way for different modes of thought on health. Diseases comply with norms. Health goes into opposition these norms. Health is a deliberating process aiming at higher levels of the human condition and their norms. To explain perfect health is abnormal in the sense that it includes disease. Health as an ideal needs to be free of disease as a normality. Canguilhem does not consider personality traits as to how changes may affect ill-health or health improvement. He just views health and disease as human qualities.

“The science of life should take so-called normal and so-called pathological phenomena as objects of the same theoretical importance, susceptible or reciprocal clarification in order to make itself fit to meet the totality of the vicissitudes of life in its aspects, is urgent far more than it is legitimate.” (21)

Canguilhem opposed the medical training programs when they claim disease are a deviation from a fixed norm of normality. Suffering establishes the state of the disease and illness corresponds to circumstances in the environment. Disease is another way of life where health is attainable.

Disease and health are different forms of excitement (John Brown 1735 – 1788). Medicine is the science of disease; physiology is the science of life (Claude Bernard 1813 – 1878). Health is life lived in the silence of the organs (René Leriche 1879 – 1955).

“The problem of the actual existence of perfect health is analogous. As if perfect health were not a normative concept, an ideal type? Strictly speaking, a norm does not exist, it plays its role which is to devalue existence by allowing its correction. To say that perfect health does not exist is simply that the concept of health is not one of an existence, but of a norm whose function and value is to be brought into contact with existence in order to stimulate modification. This does not mean that health is an empty concept.” (22)

Life, health and the living are part of dynamic struggles that cannot be deduced into scientific abstractions. Health and diseases are experiences of the living. The healthy do more than just maintain its present self – the healthy realize themselves at the risk of catastrophes.

“Health is a margin of tolerance for the inconsistencies of the environment.” (23)

Please note, the concept of health is normally used in singular and diseases in plural. Healths – what are they? Or, which are our healths? How are our healths?

Health is also discussed as a form of an age of innocence. Health is a state of unawareness where the body and subject are one. This unawareness or innocence concerns not knowing limits, threats or obstacles to health. Knowledge and insight have its source in reflections on setbacks to life and health.

Health is about consistency in life and about securities in the present and assurances for the future. Each disease reduces the ability to face other diseases. The original biological assurance without which there would not even be life. To be in good health means to be able to fall sick and recover - “is a biological luxury”. (24)

“To be cured is to be given new norms of life, sometimes superior to the older ones.” (25)

Slowing medicine down… listening to life is healthier

In opposition to overmedicalization, a slow medicine movement has arisen. According to Italian references, slow medicine saw the day of life in Italy in 2011. The first article published in 2002. The slow medicine movement is understood as a new paradigm in medicine (and at times as a palliative care or wellness in chronic illness). The slow medicine paradigm is about understanding how health and disease operate on complex levels of life and aim at creating long-term responses to better health. The human being is not considered a machine that can be fixed, but as a plant that needs to be listened to before, one can identify the cause of illness. Too often “fast medicine” will diagnose people as depressed and prescribe pills without even trying to understand what environmental issue is behind that needs tending to firstly. Slow medicine combines a variety of health centered ideas instead of just trying at one angle at a time as the earlier conceptualizations in this presentation previously exposed.

“At different levels of complexity in fact, new and unexpected properties appear, such as thinking, emotions, pleasure, health.” (26)  

Slow medicine looks at root causes that create disease or illness. Slow medicine asks the question: “What will you do with your life once your health is restored?” (27)

Center for Health Journalism asked some questions to physicians and I am just going to add two questions and responses here as food for thought. The whole set of questions can be found in my reference list if you want to read it.

1) “Medicine gives you a big hammer, but wisdom comes in knowing its limits.As physicians, we can find evidence in the research literature to support or discourage almost anything. If we do not have a coherent approach to care, it’s quite difficult to decide when we have sufficient evidence to change our practice.” (28)

2) “Should we make better use of community health workers? There has been a lot of rhetoric about the value of community health workers, but such programs don’t always work as well as they could. Some basic guidelines could go a long way toward ensuring such workers contribute to the health of patients, particularly those with chronic diseases.” (29)

There is hope… health is hope… is the “direction of travel”. Change of mentality in healthcare, modernizing the existential realm in health policy, being aware of the environmental impact on disease and finding new approaches to understanding ill-health. Ensuring patients’ values are respected instead of stale theories that are applied cynically. A person can only live his or her life at one pace at a time and create a certain amount of meaning for it to still make sense when it comes to issues of health – well-being – wellness – or the next concept to come...

© Philippa Göranson, Lund, Sweden, August 3 rd 2017

References:

Alexanderson, Kristina & Medin, Jennie, Begreppen Hälsa och hälsofrämjande – en litteraturstudie, Studentlitteratur, Lund, 2000

Birn, Anne-Emanuelle, “The stages of international (global) health: Histories of success or successes of history?”, Global Public Health, Vol. 4, 3 November 2009, Routledge Taylor & Francis Group

Bishop, Louise, Hervey, Tamara, Young Alasdair, Calum, (Ed.) Research Handbook on EU Health Law and Policy, Elgar Edward Publishing, UK & USA, 2017

Bonaldi, Antoni, Vereno Sandra, “Slow Medicine: un nuovo paradigma in medicina”, Recenti Progressi In Medicina, 2015; 106 (2): 85-91

Canguilhem, Georges, The Normal and the Pathological, Zone Books, New York, 1991

Center for Health Journalism, “Slow medicine”, XXXX

Fordham, Finn, Lots of Fun at Finnegans Wake – Unravelling Universals, Oxford University Press, 2007

Färdow, Joakim, “Sjukdomskritikern Ivan Illich bortglömd bland sina efterföljare”, Läkartidningen, No 39, Vol. 108, Stockholm, 2011

Gilmore, Richard, Philosophical Health, Lexington Books, 1999

Göranson, Philippa, Lonely Inc., 2010

Hofmann, Bjørn, “Medicalization and overdiagnosis: different but alike”, Health Care and Philosophy, Vol. 19, Issue 2, pp 253 – 264, June 2016

Horton, Richard, ”Georges Canguilhem: philosopher of disease”, Journal of The Royal Society of Medicine, Vol. 88, June 1995

Joyce, James, Finnegans Wake, faber and faber, London and Boston, 1975

Kemm, John, Parry Hayne, Palmer, Stephen, Health Impact Assessment, Oxford Scholarship Online, September 2009

Kickbush, Illona, ”Global health diplomacy: how foreign policy can influence health”, The British Medical Journal, April 2011

Killeen, Raymond, “A Review of Illich’s Medical Nemesis”, The Western Journal of Medicine, 1976 Jul; 125 (1): 67-69, PubMed

Nerbrand, Sofia, ”Kvinnor klämmer sig mellan kraven”, Ledare, Sydsvenskan, A2, 23 July 2017

Ohlsson, Birgitta, ”För oss liberaler är det en feministisk fråga att arbeta, strävsamhet och utbildning alltid måste löna sig”,Sydsvenskan, Aktuella frågor, Opinion, A3, 23 July 2017

O’Mahony, Seamus, ”Medical Nemesis 40 years on: the enduring legacy of Ivan Illich”, J R Coll Physicians Edinb, 2016;46: 134-9

www.slowmedicine.info

Sydsvenskan, “Högskolan kan aldrig vara rätt för alla”, Huvudledare, A2, 23 July 2017

Torelló, Joan, ”The wind spirits away the mind”, Language of Air, January 26, 2017

Van Dijk, Wieteke, Faber, Marjan J., Tanke Marit A. C., Jeurissen, Patrick P. T., Westert, Gert P., ”Medicalisation and Overdiagnosis: What Society Does to Medicine”, International Journal of Health Policy Management, 2016, 5 (11), 619-622

Weil, Andrew, ”What is slow medicine?”, February 17, 2015

World Health Organization, Gender mainstreaming for health managers: a practical approach, Department of Gender, Women and Health, WHO, 2011

Footnotes:

Kickbush, Ilona, 2011

Birn, Anne-Emanuelle, 2009

Torelló, Joan, 2017

Kemm, John et al., 2004

Alexanderson et al., 2000

Hofmann, Bjørn, 2016

Färdow, Joakim, 2011

Killeen, Raymond, XXXX

Killeen, Raymond, XXXX

Killeen, Raymond, XXXX

O’Mahony, Seamus, 2016

O’Mahony, Seamus, 2016

Hofmann, Bjørn, 2016

Hofmann, Bjørn, 2016

Van Dijk, Wieteke et al., 2016

WHO, 2011

Canguilhem, Georges, 1991

Canguilhem, Georges, 1991

Horton, Richard, 1995

Horton, Richard, 1995

Canguilhem, Georges, 1991

Canguilhem, Georges, 1991

Canguilhem, Georges, 1991

Canguilhem, Georges, 1991

Canguilhem, Georges, 1991

Bonaldi, A. et al, 2015

Weil, Andrew, 2015

Center for Health Journalism, XXXX

Center for Health Journalism, XXXX

[philippagoranson]

Revitalising Michel de Montaigne in the d- & e-patient movements

If one starts to roam the Internet for answers on why Michel de Montaigne (1533 – 1592) began writing what were to become his essays, one will find insinuations saying that his good friend La Boétie died. This has been understood to have made him melancholic. Some sources say his essays are written in his friend La Boétie’s memory. The idea of the horrors of war in his time is also an attempt to try to understand why he turned to the Stoic philosophers and then turned his life into philosophy and writing as a way of life. It has also been interpreted that Montaigne started to write these essays primarily to the King of France as a job application due to his previous failures in his political career. The King of France at the time was less fond of literature than a man who could represent him and France. Usually, in the humanities, no one says they know why he started writing and like to support the idea of turning it into a mystery. It is as if Michel de Montaigne was struck by magic and for no particular reason decided to retire to his library tower with the movements of his mind. Is there a secret to why he started writing? Not to me as a reader of Michel de Montaigne’s essays. To me, it has always been obvious from the first reading why he abdicated from the slavery of public service (on his own birthday, February 28th, 1571).

Michel de Montaigne starts his essays by telling his reader that it is a private book mostly written as something to himself and his close family and begs the reader to leave straight away.

“Reader, thou hast here an honest book: it doth at the outset forewarn thee that, in contriving the same, I have proposed to myself no other than domestic and private end. /---/ Thus, reader, myself am the matter of my book: there’s no reason thou shouldst employ thy leisure about so frivolous and vain a subject. Therefore farewell.” (1)

If the idea of privacy really was his intention why did he have his essays published while he was still alive? Michel de Montaigne has been perceived as having political motives with his essays. A recent biographer and historian, Philippe Desdain, says that the essays of Michel de Montaigne are applicable to significant events of his time. Philippe Desdain attempts to interpret Montaigne’s motives of writing to show off as a nobleman and that Montaigne’s essays are written for their immediate rela­tionship with the market. The essays correspond to particular expectations at the time and are at the same time also novelties that allow Montaigne to distinguish himself from others and to innovate with respect to codified social practices. Montaigne is interesting due to his predictability. He thinks and acts as others. These essays are social objects.

The essays of Michel de Montaigne can be interpreted as a form of autoethnography; that is to say a form of qualitative research in which an author uses self-reflection to explore their personal experience and connect this autobiographical story to wider, cultural, political and social meanings and understandings. Would Michel de Montaigne have liked the definition? He would prefer to be without it since his approach is to not let himself be defined.

“What I chiefly portray is my cogitations, a shapeless subject that does not lend itself to expression in actions. It is all I can do to couch my thoughts in this airy medium of words.” (2)

What kind of an event is a book?

This, in turn, leads to the question of what a book actually is. The author is the voice, but the meaning of a book involves a choir of interpretative factors that enable readers to decipher and enrich the authors’ meanings. Each interpreter continues to add his or her voice to the historical harmonisation in reshaping a book into an event. An event is the sum of their dominant interpretations. Is this really what Michel de Montaigne would have wanted us to do with his essays?

“I know not what to say to it; but experience makes it manifest, that so many interpretations dissipate truth and break it.” (3)

Michel de Montaigne is both reader and writer at the same time. In his way of writing, he does something untried – he transforms the reader and the writer into synonyms in a personal account. It is the beginning of what can be understood as a “Bildung” process long before the term was invented – this meaning education as the idea of personal freedom and development (the term Bildung emerged in the 19th century). His way of writing is to try. This is the name and concept of his brand new genre from the French word essayer: the essay (also derived from the French: assay from the word “apprantissage” in English: learning or apprenticeship).

Montaigne is part of the new order of the Renaissance and this period created a new way of quoting when writing by referring to the traditions of the ancient philosophers. His quotation technique and thought process consists of the reawakening of the philosophers, authors and rhetorical traditions from the old Greek and Latin antique cultures. All in all, his essays have 388 quotations in Latin, 18 quotes by antique Roman authors, 815 Latin quotations from 34 different antique Roman poets, 6 quotes by 6 new Latin poets, 8 quotes from antique Greek authors, 20 quotations from contemporary Italian authors and 12 quotes by 6 contemporary French authors of his time. These choices are very deliberate for a Renaissance reader. The Renaissance revitalised secular thought. The divine is deliberately left out. (4)

“Heaven is jealous of the extent that we attribute to the right of human prudence above its own, and cuts it all the shorter by how much the more we amplify it.” (5)

His way of writing is down to earth and reaches out to the ordinary reader as in a dialogue form of argumentation. Montaigne was part of the vanguard of the Renaissance movement and did what the Renaissance humanist movement was about – turning the thoughts of an elite culture into plain language to make it possible for anyone to criticise authoritarian thought and dogma. Montaigne admits to flickering around in his books, not really reading them thoroughly. He is not interested in who has said what. He is more concerned about finding good sense and thoughtfulness to inspire him to use to create his wisdom and to bounce his fun, irony, critical sense, free thought and expressions from and “knocking the arrogance of intellectuals”. (6) In his day his “free ranging essays were almost scandalous”. (7)

Michel de Montaigne is the patron of personal judgment through experience. Simplicity is his modus vivendi. His own conclusions on reading are that books only strengthen his rhetorical mannerisms – not his personality or personal growth. His essays are a fragmentary intellectual self-portrait in constant motion creating the idea of its own text universe. Any Montaigne reader will get the impression he is sitting somewhere in the same room and he is discussing openly and vividly.

The idea Montaigne had of begging the reader to get lost intrigued the physician and professor of literature and sciences Jean Starobinsky. In his book, Montaigne en mouvement, Starobinsky tries to grasp what kind of character Montaigne is throughout the whole writing process of the three volumes of his essays. Starobinsky seeks to unmask Montaigne as a hermeneutical process. Tries to discover and unveil how the writing process itself is a means of taming Montaigne. I am not convinced in the idea of taming Montaigne as in of understanding how his writing process set him free. Still, I have to credit to Starobinsky for showing how eligible Montaigne was concerning matters of medicine of his time. Jean Starobinsky praises Montaigne for elaborating on how to interpret the signs and symptoms of a disease and having an adequate value system to evaluate the options of a correct or incorrect diagnosis. Jean Starobinsky points out that Montaigne declares he has never even met three doctors who could reach the same conclusions on his medical condition. Jean Starobinsky points out that Montaigne realises it is better for him to find it out by himself. (8) Jean Starobinsky also reflects upon the authorities Montaigne deals with in meeting reason (law, theology, philosophy and medicine). How Montaigne never gives up on disputing authorities in favour of experiences of the self.

Heterotopia

There is no mystery to why Montaigne embarked into his own intellectual self-portrait.Properly understood, it is as an intellectual side effect of his human condition. Two physicians, psychiatrist Jean Sarobinsky and nephrologist Alan Wasserstein, whom both have taken an interest in Michel de Montaigne’s essays have confirmed my own comprehension of why he left his public duty. The cores of Montaigne’s essays are inactivity and the sensation of awkwardness due to kidney disease, kidney stones (renal colic). His body is slowly deteriorating. This painful encounter forces him to isolation and gives him the point of view he needs to use writing to ease himself:

“Whoever has a mind to isolate his spirit, when the body is ill at ease. /…/ let him, by all means, do so if he can.” (9)

Physician, Alan Wasserstein is attentive toward Michel de Montaigne in his article on Montaigne as a kidney stone patient and reflects upon the importance of reading his essays to understand the patient experience through patient narrative. Montaigne as a medical humanities example is helpful in understanding why patients oppose medical tradition. Alan Wasserstein appreciates Montaigne for his warm humanism because it makes it easier to alienate from the medical abstract sense of modern biomedical jargon: “Medical humanism has taken on the general humanist sense of being grounded in everyday human experience – interpersonal communication, emotional engagement – in contrast not to the divine, but to science”. (10)

Richard Lehman, who reported the Alan Wasserstein essay in the British Medical Journal, has commented Alan Wasserstein interpretation of Michel de Montaigne. Richard Lehman comes to the conclusion that the fact that he was rendered ill transformed Montaigne in the course of his writing: “Montaigne’s constant bouts of renal colic mellowed his earlier, elitist Stoicism, making him into a broader and more compassionate humanist”. (11)

Alan Wasserstein tries to figure out what kind of patient Montaigne could have been if he were alive today:

“It is instructive to look back at an individual case, that of a man we might call the first modern humanist and, perhaps the greatest of humanists. His case is especially relevant because chronic illness may have played a decisive role in shaping his outlook. /---/ Montaigne was eminently a practical man, and were he alive today /…/ I can imagine his humanist attitudes persisting in the teeth of scientific medicine. I cannot see him submitting to a restrictive diet without a fight. I cannot see him, for that matter, submitting to ‘domineering’ physicians. He would take some or all of his care into his own hands.” (12)

Dr Rita Charon who propagates for the use of narrative medicine in clinical practice has portrayed some of the difficulties and if one thinks back at what Michel de Montaigne is so angry about – many patients are still struggling with the same problems today. See the following on the problem between current evidence based medicine (EBM) and narrative medicine:

“EBM proponents answer that clinician’s considerations of patient’s circumstances and values are not ignored by the model and that hierarchy of evidence is a scientific tool aimed at assisting physicians and not dictating to them. Nonetheless, even proponents agree that they have a poorer handle on how to factor clinical judgment and patient’s circumstances than they do how to judge the hierarchy of evidence.” (13)

The problems Michel de Montaigne encounters in his time are still the same many patients encounter today: hard to get the correct diagnosis or treatment, doctors do not always seem to be able to evaluate medical knowledge properly, a doctor does not know what the lived experience of disease is, the medical knowledge system is incomplete, as a patient one has to be critical to every piece of medical information, skeptical to how this information or knowledge is scientifically created, interpreted, applied and conducted.

If Michel de Montaigne were alive today, he would be in the forefront of the e-patient movement.

Physician and cancer patient Tom Ferguson and (1943 – 2006) coined the term e-patient in the 1980’s. The idea originated from the possibilities of the Internet as a source of information, communication and socialising.

The first generation e-patient Tom Ferguson created consists of a value system of concepts empowering patients:

Electronic

Educated

Empowered

Engaged

Enabled

Equipped

Expert

In 1992, Tom Ferguson conceptualised three different patient identities:

Passive Patients

Concerned Consumers

Health-active, health responsible consumers

Passive Patients do not do much. Concerned Consumers might ask questions and try for a second opinion, but will go for what their doctor recommends. There is no doubt that Michel de Montaigne is the third and most active category: Health-active, health responsible consumer. This health responsible personality is determined to play an active role in his/her health and will never hesitate to disagree with their health advisors. They will explore alternative methods and holistic therapies. Understand medical treatments can be as hazardous as beneficial. If they are not satisfied with their doctor, they will not fear to seek several new opinions. They frequently seek additional information and ask the advice of their more experienced friends. They can consider the time to wait and see. When they are attained by illness, they refuse to play the victim and regard their diagnosis as a provocative challenge and as an opportunity to examine their lives. They express their emotions freely, ask questions and never hesitate to question their physicians’ suggestions or to criticise their physicians’ actions. (14)

Michel de Montaigne is a patient in control of himself and the situation and would make sure you get into contact with the physician that best suits your f(l)avour:

“If your physician does not think it good for you to sleep, to drink wine, or to eat such and such meats, never trouble yourself; I will find you another that shall not be of his opinion; the diversity of medical arguments and opinions embraces all sorts and forms.” (15)

One interpretation of Montaigne as part of mass media lets us know that: “Had he lived in the era of mass networked communication, he would have been astonished at the scale on which such sociability has become possible; not dozens or hundreds in a gallery, but millions of people seeing themselves bounced back from different angles” (16)

The digitalization of a Renaissance Man

Michel de Montaigne can be found on the digital Gutenberg Project on the Internet. He did not have the Internet, but the way he roams his private library can be seen as similar to anybody going out on the Internet for scientific knowledge and online self-diagnosis and then blog about it to help others. The principles are the same in his essay writing.

The idea of the Internet as a universal source of knowledge was coined for the first time in the 18th century by the German poet and philosopher Novalis (Georg Philipp Friedrich Leopold von Hardenberg 1772-1801) as he imagined an unlimited book. Expressed metaphorically, the Internet is the foresight in his dream. (17) The term ‘book’ needs to be redefined as a kind of shorthand that stands for many forms of written textual communication. A book in the digital age is expansive in thought and action. In the digital age, everybody can be everything at the same time: producer, author and consumer. The philosophers Gilles Deleuze (1925 – 1995) & Félix Guattari (1930 – 1991) have initiated the idea of the book as a machine. In their terms, the book as a machine is only of interest when one writes and is plugged into other books (the line of thought is the interconnecting blog-culture, lists of links on web pages, social media and the idea can be extended to open data sharing digital platforms). In the Deleuze and Guattari sense of a book or text, literature is explained as being an assemblage: “We will ask what it functions with, in connection with what other things it does or does not transmit intensities, in which other multiplicities its own are inserted and metamorphosed.” (18)

The Gutenberg Project makes Montaigne part of a bigger current patient advocacy movement. Montaigne has the same kind of critique as many current day patients and patient advocates portray and argue vividly. He is just as sharp and critical to the circumstances he was witnessing as contemporary patient-bloggers are today. On reading the Chapters 12 “On Physionomy” and 13 “Of Experience” in the third volume of his essays I get the sensation of a highly health literate free thinker (some critics say he is not a freethinker – “as such people came to be known in the seventeenth century”, they say Montaigne is a practitioner of critical judgment). (19) Montaigne is not only on a high level of critical health literacy (seek out information and value the reliability, take responsibility for one’s own health and have a sense of one’s own health) he transcends into the higher position of political health literacy (health literacy is about social and political rights, access and transparency) since he unmasks the ideologies of scientific medical production of his time. His well-educated essay on his medical concerns and the inabilities of physicians are also a form of medical political debate and serious source criticism. Here again, Montaigne is a forerunner. The term health literacy was coined in American terms in 1974 to represent health education that can be understood by people at all grade levels. (20) highly health literate free thinker (some critics say he is not a freethinker – “as such people came to be known in the seventeenth century”, they say Montaigne is a practitioner of critical judgment). (19) Montaigne is not only on a high level of critical health literacy (seek out information and value the reliability, take responsibility for one’s own health and have a sense of one’s own health) he transcends into the higher position of political health literacy (health literacy is about social and political rights, access and transparency) since he unmasks the ideologies of scientific medical production of his time. His well-educated essay on his medical concerns and the inabilities of physicians are also a form of medical political debate and serious source criticism. Here again, Montaigne is a forerunner. The term health literacy was coined in American terms in 1974 to represent health education that can be understood by people at all grade levels. (20)

Next to come are some contemporary examples that would suit the mindset of Michel de Montaigne. In return and I hope he will suit these people and innovations as well. Enjoy!

e-patient Dave de Bronkart, sceptical to medical authority as Michel de Montaigne

“What should we do with those people who admit of no evidence that is not in print, who believe not men if they are not in a book, nor truth if it be not of competent age? we dignify our fopperies when we commit them to the press: ‘tis of a great deal more weight to say, “I have read such a thing,” than if you only say, “I have heard such a thing.” But I, who no more disbelieve a man’s mouth than his pen, and who know that men write as indiscreetly as they speak, and who look upon this age as one that is past, as soon quote a friend as Aulus Gelliusor Macrobius; and what I have seen, as what they have written. And, as ‘tis held of virtue, that it is not greater for having continued longer, so do I hold of truth, that for being older it is none the wiser. I often say, that it is mere folly that makes us run after foreign and scholastic examples; their fertility is the same now that it was in the time of Homer and Plato. But is it not that we seek more honour from the quotation, than from the truth of the matter in hand?” (21)

If you one reads this Montaigne quote properly and studies what Dave de Bronkart is saying in his TED presentation, “Let patients help” on Youtube one can find similarities. Dave de Brokart starts by presenting the concept Patients Rising (patients taking control of their own cases, go look for more information, define what the terms of one’s own success in healthcare is).

Dave de Broker is diagnosed with cancer and starts to roam the Internet. Quickly he realises the official WebMD information is seriously misleading. He knows from the Internet that if he finds any information he is not happy about he makes sure to go look for more. Just as Montaigne knows, personal judgment is better than medical authority; Dave de Bronkart learns that the best recommendations for him are found from people with personal experience of disease and the healthcare system. Dave de Bronkart gets relevant information on how to proceed and why by people living with disease. Other patients from online patient groups explain what the correct orders of treatments are and what treatments to never even attempt. No doctors had ever explained themselves in this manner. In addition, and most surprisingly of all – the correct information is not even found on official medical WebPages on the Internet.

If Dave de Broker just had done as he had been told in healthcare, to start with he would not have been alive today. Patient groups and the Internet saved his life. Today he is a very active participant on the Society for Participatory Medicine (former e-patients.net).

PatientsLikeMe Lithium study on why one cannot trust science just as Montaigne has been aware of all the time

“Most of the instructions of science to encourage us herein have in them more of show than of force, and more of ornament than of effect.” (22)

Vice President of Innovation at PatientsLikeMe, Paul Wicks, tells the story of the Lithium study that was conducted by engaged ALS patients on the PatientsLikeMe open data sharing facility for patient reported outcomes (PROM). In 2008, an Italian clinical study claimed to have used Lithium to stop the progression of ALS symptoms. The problem with this study is that it contained only 16 positive results regarding Lithium for ALS patients. A number of ALS patients asked their doctors to prescribe the drug based on this study off the record. Many patients started reporting their dosage, side effects and outcomes on the PatientsLikeMe platform to see if this was really working. Anybody who could get hold of the drug for ALS could participate, thus completely turning the usual culture of medical trial around. All the data was available for free on the Internet as the study continued. The PatientsLikeMe study found that the Italian clinical study from 2008 was false. Many died, but their data lives on. This PatientsLikeMe trial has been published in Nature Biotechnology. (23) This PatientsLikeMe Lithium study has also been granted a Wikipedia entry. (24)

This PatientsLikeMe example is a symptom of the politics in science and this critique can easily be found on the Internet. That is to say, drug companies and academic clinical research (25) selectively choose to publish studies that seem positive where the numbers of patients in these studies are too low. (26) It is essential for patients to know what is going on and what is working or not and why so. A few years ago I went to an evening lecture at Filosoficirkeln (open lectures of philosophical inquiry) in Lund and there a Professor of practical ethics at Lund University, Dan Egonsson, explained the drug companies only have to show 30 % positive result on a drug before it can be released on the market. I do not know if this has changed since of what is going on, or if any patient advocates are arguing for a higher percentage (but I might find something one day if I go roaming on the Internet). The policy of informed consent is at stake and patients should really know when to decline treatment beforehand. This kind of information is usually not offered in the medical setting. The e-patient movement will hopefully help change the culture of healthcare where more demanding patients are just as natural as any patient safety measure. Michel de Montaigne would be first to approve.

Digital solution Montaigne would have appreciated since it puts a holistic patient experience at the centre of medical research

“What if knowledge trying to arm us with new defences against natural inconveniences, has more imprinted our fancies their weight and greatness, than her reason and subtleties to secure us from them?” (27)

The word nobism coincides with Montaigne’s interpretation of medical professionals: to excel in utter stupidity. This word has also been given a new identity by inviting the Latin word nobis (for us) to rest next to the letter m for medical in a new initiative to give patients, healthcare providers and medical research a better understanding of what the patient journey is like. The solution nobism also offers a holistic view of everything the patient is up to in the course of a disease and recovery.

Nobism is one example of the big variety of e-patient solutions available today. Nobism does more than just collect information for personal use. Nobism goes one step further. Nobism also makes sure the information on the whole picture of a patient journey is furthered to researchers who often never have the full picture of the patient outcomes from the time of not getting the correct diagnosis, to what diagnosis and treatments were wrongly tried to the next step in the correct diagnosis and which different treatment options worked out, how the disease developed over time and the changes for better or for worse, to matters of lifestyle, diet, supplements, vitamins, alternative treatment options. “The more a patient knows of their symptoms, medicine use and all they do to feel better, the better they can make decisions for future treatments”, because “most specialists have no detailed information about this”. (28) The idea is to get a better view on symptoms, medication use, vitamins or therapy. Researchers get better information about day-to-day remedies patients use to feel better to help create better long-term medical solutions.

dPatient Ulrika Sandén – Patient Voice - Not trusting doctors’ opinion, Montaigne wouldn’t either  

“The arts that promise to keep our bodies and souls in health promise a great deal; but, withal, there are none that less keep their promise. And, in our time, those who make profession of these arts amongst us, less manifest the effects than any other sort of men; one may say of them, at the most, that they sell medicinal drugs; but that they are physicians, a man cannot say.” (29)

If you took the time to read this Michel de Montaigne quote and read the following patient experience story you will see patients have to oppose to the same dysfunctional knowledge processes Montaigne accuses doctors of in his own time.

Cancer patient Ulrika Sandén gives the tale of her patient journey where the typical discrediting gender interpretations are applied at first (a woman is not considered a body – only a dysfunctional psyche). The first thought she had become schizophrenic due to some kind of explosions in her head. No such disease was found. Later on, symptoms progress and one of her arms starts jumping and moving strangely in ways she couldn’t control. She got to see a neurologist and at the time, nothing is found so the immediate conclusion is panic attacks. She tried several therapies for several years and nothing helps. Later on, her whole body is shaking. Her GP wants to send her back to the neurologist, but she opposes and thinks nothing can be done. The difference in the part of this story is that the GP knows the patient and does not look upon her as a stick figure as previous doctors had been doing. The GP had never noticed any of the psychological issues others were trying to pin on her. The GP sends the patient to get an MR and a benign cyst is found and she is given epileptic medication. The medicine seemed to work for a short time but she continued to worsen. The next attempt interprets her as having migraine and she is given other medication and recommendations on how to live her life. After a few weeks, nothing helped – as usual. She went to the Emergency Room but they said they could not help her said they could only send her to a neurologist but there was none on duty. She tries a new GP who could not understand what she had and made sure she was admitted to the Emergency Room. This GP put patient safety before organisation. While in the hospital, she was fragmentized again. She then demanded a second opinion. The second opinion responded that she has a low malignant in the brain and surgery was performed. The core line of her story is that as a patient one has to be able to dare to oppose medical authority to get the correct diagnosis. To a patient, the health care system can be compared to as going to war on the system itself. It is paramount to find medical professionals who can go against standardised ways of thinking and reasoning.

Ulrika Sandén explained herself in the regional newspaper for Scania, Sydsvenskan, in these terms: “I would not have been alive today if I only had done as I was told in healthcare. Unfortunately, this is what healthcare looks like today”. (30)

This coming trimester, she will be part of the first university course in Sweden on patient empowerment for cancer patients and their next-of-kin within the field of Design Sciences at Lunds Tekniska Högskola (LTH). Ulrika Sandén has also written the first Swedish dPatient research report on cancer patients from a patient’s perspective. Her report, “På okänt cancervatten” (31) (navigating the unknown sea of cancer) is currently only in Swedish.

Comments added after publication:

Just as Montaigne thought in his time words are fluid mediums, sort of, like clouds changing their formations as they float across the sky, and a blog entry is always open toward discussion.

dPatient stands for Designpatient and is currently the highest level in the patient movement. dPatients influence the design of medical trials and operate on both structural and process level on the healthcare system to redesign it to make it more functional toward patients. (There is a second generation to the e-patient concepts encourage change on similar levels and other topics concerning healthcare research and medical education. I can write about this in more Linkedin posts to come. At the present, there are a lot of different attempts going on in the world. Trying to interpret and understand them from all their different angels on similarities and differences is a very interesting task.)    

Ulrika Sandén after reading this piece would like to expand the conceptualization to tmdPatients (think more than doctors Patient)…

Patient-blogger Fabian Bolin on why blogging is an existential necessity just as Montaigne has known all along…

“We trouble life by the care of death, and death by the care of life: the one torments, the other frights us. It is not against death that we prepare, that is too momentary a thing; a quarter of an hour’s suffering, without consequence and without damage, does not deserve especial precepts: to say the truth, we prepare ourselves against the preparations of death. Philosophy ordains that we should always have death before our eyes, to see and consider it before the time /…/‘The whole life of philosophers is the meditation of death.’ Cicero.” (32)

If you read the Montaigne quote and take the time to understand what cancer blogger Fabian Bolin says you will learn that any disease is a threat to human freedom that needs to be addressed. Philosophy – or reflecting on life and death cannot be avoided. The emotions and melancholy disease give that new kind of understanding of life must never be suppressed and still this how patients at times are addressed. Fabian Bolin starts his presentation by looking at us and explains the situation of when someone asks how things are and what would happen if he just said things are really bad. People do not want to respond verbally to it and it is not common in Sweden to express oneself openly about the idea of the backside of life – about wanting to die. Instead, the most common question he gets is if chemotherapy is painful and people try to tell him to stop blogging. People tell him to calm down and focus on rehabilitation instead. What people do not seem to understand is that his patient-blogging is his existential rehabilitation.

Fabian Bolin explains that thanks to his blogging, he has been able to live – not just survive - through this whole cancer experience. Cancer is a mental trauma to both patient and next-of-kin. This should be common knowledge in healthcare, but during his whole stay in the hospital no medical professional – doctor or nurse – even once asked him how he felt.

Fabian Bolin won the Swedish CancerRehabFund journalistic prize in 2015 for the best reporting of the year on cancer as experience and rehabilitation. (33) It is from his experience he and his best friend Sebastian Hermelin has initiated the digital platform WARONCANCER to gather as many cancer-patient narratives they can.

Patient-blogger Funkisfeministen on why Dr Google is a better option than healthcare professionals in the same critical stance as Montaigne  

“I had rather understand myself well in myself, than in Cicero. Of the experience I have of myself, I find enough to make me wise.” (34)

The Swedish patient-blogger with the nickname Funkisfeministen has explained why Googling is better than health care professionals. First of all, because the health care system is not updated. She was diagnosed with a rare disease and the people she meets in the health care setting aren’t even interested in trying to get updated on what she has. Even patient association home pages are not updated enough on the latest research. She has to find out by herself what she needs to know on her condition on the Internet. In her case, Googling is the best alternative: “As long as healthcare professionals are not able to contribute to better knowledge amongst themselves or towards patients, it is not at all encouraging to have to do with healthcare professionals who mock patients that go looking for information by themselves” (35)

Wrongly diagnosed Twitter microblogger @livetsbilder on why it is impossible to trust what a healthcare system is up to just as Montaigne has been arguing since the 16th century

“Science, indeed, does us one good office in instructing us exactly as to the dimensions of evils.” (36)

Microblogger LivetsBilder on Twitter added to the general disappointment of medical practice with a statement of fake news. Physical activity is recommended for patients who can’t even move. The discussion that follows on her Twitter account to her outburst is the usual critique of medical culture as inconsistent, non-attentive and with no concern for a person centred approach. The medical mind here is just a means of evil when care is proclaimed in general terms. The problem this patient has encountered is that she is wrongly diagnosed. The medical professionals closest to her deny the diagnosis she has even exists. Professionals who understand and can diagnose her properly are out of reach and she is too ill to even be able to take the trip to get her medical documentation in order (her description and documentation was sent by post there). On top of this distress, the Swedish government has passed legislation that makes one lose one’s job if one is not rehabilitated properly to return to work. The strangest things, in this case, are that her medical documentation is incorrect and she has been denied funding for sick leave. The paradox she is in is beyond surrealism: at the same time as her documents do not grant her public sick leave, she is rendered unemployed by the same incorrect medical documentation.

Michel de Montaigne as a reflection in the age of blogging

Should be Montaigne considered a voluntary, involuntary or just belated blogger on the digital Gutenberg Project? The Swedish author Bodil Malmsten (1944 – 2016) plays with the idea of Montaigne as a blogger in her own blogging. The idea of self-writing actually makes many autobiographical-like writers seem as one or other form of Montaigne. Bodil Malmsten at least thinks Montaigne would have come up with a new concept for the word blog Bodil Malmsten can’t stand. Why not just let Michel de Montaigne himself become a generic term: Montaignesque. And this is the problem. Montaigne would prefer to be left as an open free association. Whatever term one tries to apply to him “it is far too sterile a term for the mind of Michel de Montaigne running after itself, arguing against argument, reading his thoughts and his ageing body.” (37)

Montaigne refurnished his tower to suit his closest needs: reading, writing and sleeping: “When Montaigne moved his books to the third floor of the tower, he moved a bed to the floor below”. (38) Space for free ranging thought depends on a way of time off where one can let one’s thought progress at ease and leisure and for pleasure no matter the circumstances. On Twitter I have come across quite a few microbloggers who are so ill they cannot leave their beds. They spend some of their conscious time from their beds on the 140-character space on Twitter and they are just as angry as Michel de Montaigne in his time about the medical profession and their lack of knowledge and understanding. This at least helps them get in touch with other co-patients and the informed society… Twitterpatients are often heartwarmingly spontaneous, seriously concentrated thought or exclaim outraged criticism. There are no limits to say where an essay begins or ends. Tweets by @sosadtoday have been transformed into a published essay (example: So Sad Today by Melissa Broder) (39). There is no limit to what an essay can be and we just have to thank Montaigne for starting to write without an adequate literary term. The Internet and social media grant the similar freedom from rigidity Montaigne would approve of.

The last words of encouragement from Michel de Montaigne

The last words and citation in Michel de Montaigne’s essay will also finish my essay on revitalising him in this current patient movement. He wishes happiness and good health to all:

“Let us recommend that to God (Apollon), the protector of health and wisdom, but let it be gay and sociable:

“Frui paratis et valido mihi/Latoe, dones, et precor, integra/Cum mente; nec turpem senectam/Degere, nec Cithara carentem.”

[“Grant it to me, Apollo, that I may enjoy my possessions in good health; let me be sound in mind; let me not lead a dishonourable old age, nor want the cittern.”—Horace, Od., i. 31, 17.]

[“Grant it to me, Apollo, that I may enjoy what I have in good health; let me be sound in body and mind; let me live in honour when old, nor let music be wanting.”]” (40)

©Philippa Göranson, Linkedin, Lund, Sweden, July 21, 2017

*****************************************************************************************

FYI: in this reference list the media I have used are embedded so you can see for yourself - if they do not appear just Google and you will find...

Backwell, Sara, How to Live or A Life of Montaigne, Other Press, New York, 2010

Berkowitz, Joe, ”Why So Sad Today Is The Only Twitter Book That Might Save Lives”, The Fast Company, March 18, 2016

Bolin, Fabian, “Verkligheten ingen vågar prata om”, 3minTalk.com

The Book of Life, “Michel de Montaigne”, The School of Life

de Bronkart, Dave, “Let Patients Help”, TEDxMaastricht, Youtube.com, April 7, 2011

CancerRehabFonden, “CancerRehabFondensJournalistpris 2015”, Stockholm

Charon, Rita & Wyer, Peter, “Narrative evidence based medicine”, The Lancet, 26 January, 2008

Deleuze, Gilles & Guattari, Félix, a thousand plateaus/capitalism & schizophrenia, The Athlone Press, London, 1999

Desdain, Philippe, Montaigne: A Life, Princeton University Press, 2017

Engdahl, Horace, “Tredje sidan: Jaget går vilse bland monstruösa gestalter. Litteraturforskaren Jean Starobinski talar förnuft med Montaignes melankoliska essäer”,Kultur & Nöje, Dagens Nyheter, Stockholm, 1995-01-19

Ferguson, Tom, ”Patients, Heal Thyself: Health in the Information Age”, The Futurist, January-February, 1992 (digital on Questa magazine or Google title)

Foglia, Mark, “Michel de Montaigne”, Oppy, Graham & Trakakis, N. N. (Ed.), Early Modern Philosophy of Religion, Volume 3, The History of Westerns Philosophy of Religion, Routledge, London & New York, 2009

Goldacre, Ben, “Why doctor’s don’t know about the drugs they prescribe”, TED Talks, Youtube, September 27, 2012

Funkisfeministen, “Den googlande patienten – har vi något val?”, August 23, 2016

Hyman, Mark, “Why Antidepressants Don’t Work for Treating Depression”, Huffpost,the blog, November 17, 2011

Kniivilä, Kalle, “Cancerdrabbade får egen universitetskurs”, Sydsvenskan, 14 April, 2017 (Sveriges Radio P1 about this course)

Kramer, Jane, “Me, Myself and I – What made Michel de Montaigne the first modern man?”, The New Yorker, September 7, 2009

Lehman, Richard, “Humanist of the Week: Michel de Montaigne (1533-1592”, From The BMJ Opinion, June 10, 2007

Livets Bilder; ”Idag är en sån där dag när jag ser mer rött när fysisk aktivitet presenteras som boten på allt. Mirakelmedicin som gör alla friska! #FakeNews”, July 14, 2017

Malmsten, Bodil, Loggböcker 2003-2015, Modernista, Stockholm, 2016

Minto, Robert, "The myth of the apolitical Montaigne", Los Angeles Review of Books, July 3, 2017

de Montaigne, Michel, Essays, Gutenberg Project, Translation by Charles Cotton, Edited by William Carew Hazlitt, 1877

www.nobism.com

Nordin, Svante, Förlåt jag blott citerar, Bokförlaget Nya Doxa, Nora, 2001

Persson, Magnus, Den goda boken, Studentlitteratur, Lund, 2012

Sandén, Ulrika, ”Patient Voice Ulrika Sandén Thursday”, Wonca Europe Conference 15-18 June 2016, Copenhagen, Denmark

Sandén, Ulrika, ”På okänt cancervatten”, Designvetenskaper, Lunds Tekniska Högskola, Lunds Universitet, 2016

Sharpe, Mattew, ”Guide to the classics: Michel de Montaigne’s Essays”, The Conversation, November 1, 2016

Starobinsky, Jean, Montaigne i rörelse, Atlantis, Stockholm, 1994 (Original title: Montaigne en mouvement)

Wasserstein, Alan, G., “Lessons in Medical Humanism: The Case of Montaigne“, From: Annals of Internal Medicine, Volume 146, No 11 (pgs. 809-813), 5 June 2007

Wicks, Paul, ”Your data is doing good: The Lithium Study”, PatientsLikeMe, December 18th, 2015

https://em.wikipedia.org/wiki/PatientsLikeMe

Quizlet, Health Literacy

Footnotes:

(1) de Montaigne, Book 1, Ch. 1

(2) de Montaigne, Michel

(3) de Montaigne, Michel Book 3, Ch. 13

(4) Nordin, Svante, 2001

(5) de Montaigne, Michel Book 3, Ch. 12

(6) The Book of Life, XXXX

(7) Sharp, Mattew, XXXX

(8) Starobinsky, Jean, 1994

(9) de Montaigne, Michel Book 3, Ch. 13

(10) Wasserstein, Alan, 2007

(11) Lehman, Richard, 2007

(12) Wasserstein, Alan, 2007

(13) Charon, Rita & Wyer, Peter 2008

(14) Ferguson, Tom, 1992

(15) de Montaigne, Michel Book 3, Ch. 13

(16) Backwell, Sara, 2010

(17) Persson, Magnus, 2012

(18) Deleuze, Gilles & Guattari, Félix 1999

(19) Foglia, Marc, 2009

(20) Quizlet; July 2017

(21) de Montaigne, Michel Book 3, Ch. 13

(22) de Montaigne, Michel Book 3, Ch. 12

(23) Wicks, Paul, 2015

(24) Wikipedia, July 2017

(25) Goldacre, Ben, 2012

(26) Hyman, Mark, 2011

(27) de Montaigne, Michel Book 3, Ch. 12

(28) Nobism.com, July 2017

(29) de Montaigne, Michel Book 3, Ch. 13

(30) Sydsvenska Dagbladet, 2017

(31)www.design.lth.se/fileadmin/designvetenskaper/Paa_okaent_cancervatten_slutversion.pdf

(32) de Montaigne, Michel Book 3, Ch. 12

(33) Cancerrehabfonden, 2015

(34) de Montaigne, Michel Book 3, Ch. 13

(35) Funkisfeministen, 2016

(36) de Montaigne, Michel Book 3, Ch. 12

(37) Kramer, Jane, 2009

(38) Kramer, Jane, 2009

(39) Berkowitz, Joe, 2016

(40) de Montaigne, Michel Book 3, Ch. 13

[philippagoranson]

Illness is a threat to human freedom

Illness as The Human Condition: the possible attribute to citizens of illness.

Is it sound to say that illness is one of the more explicit inquiries concerning the human condition? It all depends on how one perceives life, the living and the dead. Illness is something bound to happen to everyone of us at some time in life as a horizon of possibilities. Hungarian philosopher István Király’s philosophical investigation, Illness – A Possibility of the Living Being – Prolegomena to the Philosophy of Human Illness, on the matter and he clearly states that human, plant or animal illness is one of the unavoidable happenings. Illness as such can be understood as a part of life itself and even as the essence of life. In taking illness seriously, István Király has fully acknowledged the patient as a person by looking for a more in-depth understanding of the patient experience as being part of the human condition. The philosophical investigation undertaken by István Király is founded on the conceptualization of Dasein (Heidegger) as being in time and makes illness a part of our everydayness. Illness as the possibility of being inside of life.

“Illness is, therefore, an experience or outright a danger to existence and its possibility, as well as a way of being that nobody has ever been and will ever be ontologically or existentially exempted from.” i

The possibility of the living as referred to by István Király concerns the distinction of making illness into a reality and something that actually will happen. It is not just a notion or something to be indifferent about. “Illness as a possibility and the possibility of illness pertains to life itself, and – in a specific way, but also to human life, to human existence.” ii

In the culture I am from the word patient comes from the idea of the Latin language meaning to be patient. The patient is understood in a fragmentary disease-centric medical realm that impersonalizes anyone attained by illness. In Hungarian, the word for a patient is beteg coming from the adjective “beteg” meaning ill. István Király also reflects upon what happened to the Hungarian medical discourse when a Medieval Latin medico was forced upon them. It completely altered the existential structure of the original Hungarian idea of the doctor too – orvos, orvoslás – of Finno-Ugric or Turkic origin, meaning the person who knows the “depriving-pilfering forces of illnesses”. This connection has gone lost over time – due to the disease-centric medical culture. The understanding of the human condition of illness is lost.

Illness, as portrayed by philosopher István Király, is not just something that happens as an outside threat. Illness has to be understood as something of the living, something on its own being and “essential motion”.

“Illness proves to be thus, again and again, the possibility of a living being which must be thought of as something which takes part in a most essential and decisive way and respect in the actual and explicit formation and articulation of the way life and the living exists, happens, and articulates in its own abilities and temporality.” iii

Illness is in opposition to the norm of health. Health is the ideal state. Still, one needs to take into account as István Király points out that health is just an outline of what is going on inside –illness as a possibility. The idea of health makes sense to the living but illness is more alive than the structural ideal of health. Health shows itself as a non-being, a complete non-existent and absent person in regard to the possibility of illness as being part of human existence. Health and illness form the possibilities of being the same living being. Illness as the possibility of the living turns the human being towards him/herself and in doing so reconstructs and changes life itself.

“Illness therefore, just like the possibility of illness, refers to man, concerns man, and pertains to man. It does not only concern the human body, the human soul, or the human mind. The person I is ill in his personal existential entirety, in the fullness of his being, and the entirety of the possibilities of these modes of being.” iv

István Király moves closer to illness as the study of motion – or philosophically dynamis (Aristotle). It is only in understanding the “entire horizon” of what is essential to illness that it is even possible to understand why a person is attained by illness. The energy of illness (classic physics) refers to the essence and the dynamic is the outline.

“With respect, therefore, to being, the living beings, and their being, ‘illness’ and ‘health’ are not merely some mutually exclusive ‘states-of-being-alive’, but much rather possible modes of being alive. Modes of being-alive which are articulated, in relation to the horizon-like possibilities, or ousias by the privation (steresis) of these possibilities.” v

The conceptualization of illness needs to expand its horizon. Illness is a challenging phenomenon, for the individual, society and policymaking – and as such something concerning humanity and human freedom.

Illness is a challenge to human freedom!

István Király makes illness the possible possession of the living and makes us understand that even being attained by illness is still being in possession of one’s own life. Illness is explicitly the ill person’s own possession. This reflection István Király creates is when one comes to think of it more closely a real provocation to medical hierarchy and political goals. Medical professionals do not always consider this human rights stance and that citizens need to be better informed.

The Nuremberg Code from the time after World War II is not only meant only for Nazis – it has to be repeated even today. The intentions of informed consent are not always respected. I dwell upon the idea of human rights and illness as the person’s own possession.

The phenomenon Patients Rights does exist but is not respected. The other day I came across a PowerPoint slide from the Patient Experience Summit 2017 Empathy + Innovation in Cleveland, Ohio, by American patient advocate, Grace Cordovano, on Twitter May 23, 2017, giving a short historical recollection on the more contemporary phases of the development of patients’ rights:

1970’s respect patient’s rights

1992 requirements impacting consent, advanced directives etc.

2017 The right not to be harmed

The right not to be harmed was declared already after World War II as a part of the free consent policy due to the Nuremberg Code. It is alarming that first, by 2017, it is proclaimed as a general right not to be harmed in healthcare. There has to be a difficulty in the conceptualization of health and illness concerning these rights. If illness is made the person’s own possession, perhaps these ideas from the ideal world of health might actually come to life – become part of human existence this time round.

Illness makes it possible to build a new “determined, and particularly human, being-here-like relations” as István Király points out. It is both a holistic and an existential approach to the deficiencies that reshape the life of one person at a time. The quest of illness is greater than that. Illness clarifies the problematic meaning of human life on several levels. Illness as such is also related to our cultural, political and societal norms and as such is the human rights perspective.

Patients’ Rights in different countries differ due to different jurisdictions, cultural and social norms.

The World Health Organization has 4 patients’ rights models on patient-physician interaction:

The paternalistic model states that the medical profession judges the best interest of the patient.

The informative model acknowledges the patient as a consumer who can judge what is in her or his best interest. Within the informative model, the medical profession makes sure the patient has the facts right about different medical interventions before choosing.

The interpretative model focuses on the patients’ values and what the patient wants. Within the interpretative model, the medical profession helps the patient understand his or her own values before choosing a treatment.

The deliberative model makes sure the medical profession helps the patient make the right choice in regards to his or her health-related values that are realistic to the clinical situation at hand. In the deliberative model, the medical profession acts as a teacher or friend.

These WHO conceptualizations are paternalistic, with exception of the informative model where the patient is seen as to be able to judge what is in his or her best interest. In the 3 other models, it is still up to the physician to make way for what the patients’ values are. There is still a long way to go on these conceptualizations to make them be in favor of the patient as a citizen and the patient’s values as being a citizen of his or her own illness.

The core issues are the patients’ integrity and privacy in all matters concerning healthcare are to ensure the patients’ integrity the patient needs to be informed of options and risks with treatments or risks on taking part of research and the quality of care delivered. If patients’, that is also to say, citizens – or persons of illness - are not properly informed about their patients’ rights and medical law it is impossible to ensure effective patient protection. In addition, “the creation of effective patient protection laws relies on public knowledge”.vi One does not have to look far to find news about that disobedience could do the healthcare system a great deal of good: “Every day, in every type of healthcare setting, things happen that aren’t in the best interests of people getting care. People realize that they are happening, and, in many cases, they’re happening because the rules say that is what is supposed to happen.” vii

The public – citizens of illness – need to act for a better reality. It is not always ensured since it is still a provocation to the political establishment and the hierarchical structure of the culture of healthcare. This explicitly makes illness a challenge to human freedom on both the public and the private understanding of the human condition.

©Philippa Göranson, Lund, Sweden, June 2017

References:

Bellard, Tim, “"Disobey, please", https://tincture.io/disobey-please-eb10541b48886

Dreger, Alice, “People Really Need to Know When They’re Being Experimented On”, Motherboard, January 31, 2017 https://motherboard.vice.com/en_us

Emanuel, J. Ezekiel & Emanuel, Linda L., “Four models of the physician-patient relationship”, JAMA: Journal of the American Medical Association, April 22, 1992 v 267 nr 16 p 2221 (6) www.antoniocasella.eu/salute/Emanuel_1992.pdf

Cordovado, Grace, Dr. Enlightening Results, Twitter: @GraceCordovano

Király, István, Illness – A Possibility of the Living Being. Prolegomena to the Philosophy of Human Illness (2011) www.kalligram.com

Shaw, David, “The implications of conflicts of interest for informed consent”, The BMJ opinion, January 18, 2017, blogs.bmj.com

Weindling, Paul, “The Origins of Informed Consent: The International Scientific Commission on Medical War Crimes, and the Nuremberg Code”, Bulletin of the History of Medicine 75.1 (2001) 37-71

World Health Organization, “Patients Rights”, www.who.int./genomics/public/patientsrights/en (June 2017)

Footnotes:

i Király, István, 2011, pg. 131

ii Király, István, 2011, pg. 136

iii Király, István, 2011, pg. 144

iv Király, István, 2011, pg. 180

v Király, István, 2011, pg. 166

vi www.who.int./genomics/public/patientsrights/en

vii Bellard, Tim, https://tincture.io/disobey-please-eb10541b48886

[philippagoranson]

Litteraturkritikers snobbism - nej tack!

Daganteckning om litteraturkritiker. Litteraturkritiker tycks inte riktigt veta hur de ska klassificera böcker med självbiografiska inslag. Nu handlar det om en bok av Karl Ove Knausgård och han blir föremål för samma slags ”mellanbok” definiering som Bodil Malmsten skrivit om i samlingen ”Loggböcker” – problemet författare har gentemot litteraturkritiker som inte vill värdera det mer vardagsnära som tillräknelig text. Det är onekligen komiskt att läsa hur litteraturkritiker uttrycker sig om alla dessa gränsfall och en formulering jag måste spara är: ”Det är en ofrånkomlig paradox, att också den litteratur som satsar allt på att spegla verklig­heten skapar sin egen verklighet”. Självklart är varje individuell handling just det. Skrivandet som fenomen är egentligen mer paradoxalt än att litteraturkritiker vill utgå från böcker som de klassificera stringent. Knausgård erkänner att den verklighet han längtar till måste han vända kinden till för att kunna skriva: ”Jag sitter här och skriver om världen, alla tingen, djuren och växterna i den utan att ta del i den”. Det är konstnärens lott. Litteraturkritikern som recenserat ”Om sommaren” i Sydsvenskan erkänner att de mest uppskattade partierna är dagboksfragmenten: ”Ändå kommer jag på mig själv med att längta till dagboksavsnitten. För aldrig är Knausgårds prosa på intensiv, så oförlikneligt skarp och sensibel, som när han borrar sig inåt, uppmärksammar varje nyans av vardagen och glidflyger mellan de inre och yttre upplevelserna”. Jag sitter här och tänker att jag vill komma på något till dagbokens försvar. Att en utgiven dagbok inte är något mitt-e-mellan utan sin egen. Inget som behöver försöka jämföras med skönlitteratur bara för att litteraturkritiker helst inte vill befatta sig med människors verklighet på samma sätt som allmän­heten kan vilja.

©Philippa Göranson, Juni, 2017

[philippagoranson]

En Bibliofils Betraktelser

Mitt barndomshem var fullt med böcker. Avståndet mellan mig och min faders bibliotek som upptog stora delar av hemmet, var stort. Böckerna var inga pekpinnar som tvingade sig på mig, utan biblioteket tedde sig tyst och tillbakadraget. Hur många barn tar sig egentligen in i de vuxnas bibliotek? Troligen inte så många. Det räcker att läsa baksidan på den franska utgåvan av Jean-Paul Sartres roman ”Orden” för att begripa det. Sartre berättar hur hans liv omges av böcker redan innan han kan läsa och han föreställer sig att han en dag kommer att sluta sitt liv ibland dem. Jag tror inte att han bokstavligt menade att han skulle avlida bland böcker, vilket min far en dag gjorde, utan han såg det snarare som en upphöjd tanke att dö med böckerna nära i medvetandet.

Ibland undrar jag om det är jag som lever med böckerna eller om det är böckerna som lever med mig. Jag kan önska att en bok vore levande och reagerade tillbaka. Att den kunde visa vad den kände och att vi kunde diskutera saker. Men samtidigt är det kanske bra att de är endast är böcker då man inte kommer i konflikt med dem, rent konkret. De är ofarliga. Jag kan stänga en bok när jag vill utan att den blir upprörd, och jag är alltid välkommen tillbaka, när jag vill.

Läsandet är för mig en typ av sökande. Ett sökande som tar vid i läsfåtöljen men samtidigt letar sig in i hela mitt vardagsliv. Man kan säga att jag skapar ett eget universum innanför det vi redan lever i. Med mina böcker, bygger jag en mur mot verkligheten när jag inte står ut med min dagliga tillvaro. Det finns en pendelrörelse mellan att söka livet och en vilja att ta död på det, genom läsningen. Böckerna är oerhört tillåtande. De erbjuder en typ av frånvaro som samtidigt utgör en annan typ av närvaro jag behöver för att ta mig fram i livet.

Mitt förhållande till böcker har samtidigt varit ett sätt att hålla minnet av min far vid liv. Tanken på böcker och honom etsat sig fast eftersom att han, under sitt arbetsliv, i andra vardagar och länder var något av en kultfigur. För att lyckas i affärer på ett kulturellt plan läste han in sig på de olika ländernas skönlitteratur. Han dog tyvärr innan jag hann ställa de rätta frågorna. Detta fick mig att djupdyka i skönlitteraturen. Jag började att likt min far, läsa mig in på författare från världen alla länder. Dessa böcker med alla olika kontraster har sedan blivit en urkälla som fyllt mig med idéer om hur jag vill att min vardag ska se ut. Jag upptäckte att jag kunde använda litteraturen som en kompass i mitt liv.

I min familj är det jag som allra mest förknippas med min bibliofile far. Och det var nog också jag som reagerade starkast när jag såg hans dödsbädd. Han bodde ensam i slutet av sitt liv. Hans dödsbädd bestod av en krans böcker som samlats runt hans kropp. Böckerna var hans sista vänner, de mest trogna. Att plocka fram hans böcker i efterhand har varit en underlig process. Det var något jag kom att göra sent, efter jag byggt upp ett eget hemförråd av böcker. Till min förvåning slogs jag av hur kusligt lika våra boksamlingar var.

Läsandet är även en längtansprocess för mig, till ett tillstånd av lycka. Ofta längtar jag tillbaka till min tid i Paris när jag  läste om världsalltet i skolan, vetenskapens utveckling och hur världsordningen ställdes på ända. Så, när jag behöver dra igång mig själv igen som ett gammaldags mekaniskt ur, tar jag fram mina gamla böcker och reser tillbaka till en plats jag aldrig borde ha förts bort från. När jag exempelvis läser om den förvetenskapliga tiden är jag återigen på min favoritplats på jorden, i ett klassrum i Paris med en fantastisk lärare, och i ett tillstånd jag önskar jag hade kunnat kapsla in. Böckerna låter mig göra just det. Dessa resor gör att jag uthärdar dagar jag annars inte hade stått ut med. Om böckerna levde skulle de fascineras över vilken inverkan de har på mitt liv.

©Philippa Göranson

Denna krönika publicerades hos Vardagskrönikören - Vardagsreflektioner i miniformat i mars 2017. http://vardagskronikoren.blogg.se/

[philippagoranson]

Söker en ny plats för existentiell hälsa

En sund själ i en sund kropp är det gamla talesättet. Det kanske inte är så att hälsa kommer inifrån. Hälsa kan handla om helt andra mekanismer. En sund kan plats gör en sund kropp.

Platsens betydelse är något många brottats med utifrån skiftande innebörder. En plats är inte bara en plats utifrån den första tanken om vad en plats i spatial och geografisk bemärkelse ser ut att vara. En plats betyder möte och kommunikation – den föder känslor och berättelser. Plats kan vara en idé, ett tillstånd, rumslig mening, medier, en filosofi, författarskap, en sjukdom, en dagbok eller ytterligare annat. För att förstå en plats på ett djupare plan måste man fundera närmare över samspelet mellan plats och individ.

En plats kan inte bry sig om mig – inte ta tag i mig som jag vet att medvetenheten om en plats kan göra i mig.

Enligt Facebook spelar det roll var man kommer ifrån. Jag har under lång tid medvetet valt att inte delge någon plats för att jag inte kunde bestämma mig om jag skulle välja utifrån var jag vuxit upp först eller utifrån den plats som invaderat mig mest. Efter långt övervägande tog jag det kronologiska valet på grund av att den första platsen skapat mig som språkljud. Jag valde inte den plats jag egentligen har bäst samhörighet med i existentiell betydelse. Den plats jag tänker mig har invaderat mig mest.

I Sverige är det nästan omöjligt att ge mig en geografisk tillhörighet utifrån dialekt. Jag befinner mig inom de berömda gränssnitten satta av lingvisten Noam Chomsky, hans berömda Chomskylinje. Enligt Chomsky handlar det om nervsystemet – språkljuden blir enhetliga inom en viss ålder utifrån miljön. Det finns mycket i livet man kan tolka utifrån nervsystemet. Mitt nervsystem kanske jag behöver en platsfilosofi för?

Att en plats i en viss tid i ens liv kan sätta starkare prägel i den enskildes medvetande har den amerikanske läkaren Daniel Siegel förtydligat i sin bok “The Developing Mind”. Siegel ser bl. a. på medvetandet genom nervsystemets utveckling som ett sätt att försöka förstå vad som ter sig som mest sant för var och en av oss på olika sätt. Daniel Siegel gör ett omfattande flervetenskapligt försök och binder även in en antropologisk kultursyn i sitt utredande om hjärnans sätt att kunna se och uppfatta. Olika naturvetenskapliga discipliner kan strida om vad medvetandet är eller inte är eller om det är ytterligare något annat som ingen egentligen kan säga något exakt om. Många gånger försöker man anförtro naturvetenskapen en stabilitet som inte ens naturvetenskapen själv kan bekräfta för att den stadd i ständig förvandling och är i själva verket en tolkningslära. Daniel Siegel är väl medveten om detta och visar var han behöver lämna sakfrågor öppet för tolkning och hur försiktig man behöver vara när man applicerar naturvetenskapliga teorier.

Max Tegmark lägger fram ett helt annat förslag om medvetandet utifrån kvantfysik i boken 2Vårt Matematiska Universum”. Tegmark går helt emot nervsystemets idé som förklaringsmodell om det begrepp vi tycks ha fastnat för när vi tänker oss medvetandet. Tegmark anger att ingen kan säga vad medvetandet föreställer. Hur skulle en ”medvetandets” kvantfysikens platsfilosofi kunna formuleras om man utgår från att det handlar om det som sker mellan den yttre verkligheten och den inre verkligheten där det också finns en mellanliggande konsensusverklighet?

Det är filosofins, litteraturens och vetenskapens mening att fånga livet som fenomen och livsform. Att tolka livet innebär att prövas utifrån olika strukturer. Om tolkningarna stämmer eller inte stämmer kanske inte beror så mycket på tolkningarna utan på att det är något med strukturerna för resonerandet.

Platstillhörighet kan handla om vilket språkljud man formats inom och att detta språkljud följer med en i alla andra språk man sedan kommer att lära sig. Vid förflyttning leder det till att man förvandlas till ett förstelnat eko utifrån det tidigare självet där den nya tillvaron formas utifrån en klanglös tillvaro. Med det menar jag platsen som amfiteater. Platsens naturliga förstärkning uteblir. Med språkljud följer kulturellt beteende och tolkningsmönster. Med språkljudets idé kan man bekräfta den ständiga poetiska kampen och försöket om befrielsen från orden när man söker sig utanför dem. Språkljudet tänjer ordens gränser. Precis som allt det arbete James Joyce lade ner i sitt mästerverk “Finnegans Wake”. Finnegans Wake befriar från språkets platstillhörighet och ger förutsättningarna för en flertydig mellanliggande verklighet.

Det är förnimmelserna jag är ute efter. De motoriska förklaringarna naturvetenskaplig förståelse ger sig på är ett sätt att söka en viss typ av klarhet genom. Den klarhet genom hur man tänker sig att något naturvetenskapligt ter sig som utifrån rådande paradigm och vetenskapligt uppfunnen begreppsbildning. Jag kan bara låta mig inspireras och se dessa vetenskapliga förklaringar som metaforiska försök inför ett filosofiskt sökande.

Naturvetenskapligt tänkande handlar ofta om att se osäkerheter och att lära av tankens alla misstag. En experimentell platsfilosofi utifrån naturvetenskapens osäkerhetstänkande kan ta sig oanade former utifrån idéer om platsbegärsformer. Filosofi vill utreda tänkandet inför platsfilosofiska utredningar. Litteraturen vill ta reda på hur det kan se ut eller kännas på plats. Litteraturen och filosofin försöker också ta reda på varför olika platser blivit så olika på grund av de som befolkat platsen. På något sätt skulle jag vilja slå ihop filosofin och litteraturen till en atmosfärernas fenomenologi.

En tvingade förflyttning ritade om hälsoförloppen. Min berättelse har ändrats tack vare biofysiken som behandlingsmetod. På grund av det behöver jag nu en annan materiell fantasi inom filosofins än vad jag hade tidigare. Tidigare hade jag en besatthet med vattnet som filosofisk idé med antikens Thales för förklaringen om alltets ursprung utifrån vattnet som materiell idé.

Det är numera till antikens Anaximenes jag vänder mig till för filosofin om alltets ursprung. Anaximenes, som var den förste av alla västerländska vetenskapsfilosofer som sade att allt liv bygger på luftens idé. Anaximenes är den som har lett oss rakt in i utvecklandet av fysiken, astrofysiken och biofysiken. Luft, eter, pneuma som idéer om själens beståndsdelar. Många filosofer brottats med denna luft. Idag tänker man sig till och med att den fria viljan är kopplad till lufttillförseln i hjärnan utifrån vad pranayama andningsteknikerna kan åstadkomma. Forskaren Pratibha Gramann har undersökt det närmare och kopplar det till nervsystemens allra yttersta delar.

En spansk filosofie doktor, Joan Troelló, som forskar om luften och medvetandet utifrån filosofen Henri Bergson skriver: ”Självkännedom bygger på en rad inre impulser, fenomenologin över vår existens, det i sin tur uppmanar oss att ta reda på hur kroppen agerar, inte i sig själv i första hand men utan utifrån sinnenas medvetande och vad dessa fenomen kan ge upphov till.”

Jag tar mig till några natur- & läkarvetenskapens filosofer för att sådana tänkare också tillhör den materiella fantasin. Jag borde sökt ett specifikt anförande långt tidigare. Framförandet av den 1700-tals läkare som på sin tid blev sedd som en enfant terrible på sin tid när han deklarerade själens död utifrån en själsligt materiell förklaringsmodell, Julien Offray de La Mettrie. Kognitionsvetenskapens grundare, doktor La Mettrie har en påtaglig platsmedvetenhet i “Maskinen Människan”. Han skrev redan på 1700-talet att: “Klimatets makt är så stor att en man, som byter boningsort, mot sin vilja undergår förändring. Han är som en vandrande växt, som planterat om sig själv: om klimatet inte längre är detsamma som det varit, är det naturligt att den antingen vissnar eller frodas.” Närmare vår egen nutid har läkaren och antropologen Cecil Helman i “Culture, Health and Illness” formulerat samma ansats om påtvingad förflyttning och ohälsofrågor som La Mettrie. Frågan är om det är flytten i sig eller identitetsförlusten det innebär. Den klassiska frågeställningen om natur eller kultur.

Roland Hallgren menar i sin bok “Plats och känsla” att förhållandet mellan en plats och andligt samt kroppsligt läkande behöver utredas mer. En plats kan förebygga ohälsa. Det handlar inte om att åka på inåtvänd rehabilitering eller att ta sig till specialdesignade retreat. Frågan är djupare och mer komplicerad än så. Läkande plats är utåtriktad mot hela livet självt.

Kan man dryfta en genetikens platsfilosofi? Sociobiologen Edward O. Wilson har gjort ett försök i sitt verk “On Human Nature” försöker hitta en förklaring mellan naturens och kulturens som påverkansformer ideologiskt sett till genetikens och det naturliga urvalets fördel. Frågan är om det verkligen är en sund platsfilosofi Wilson gör eftersom den fria viljan tycks komma i skymundan. Jag har sett reflekterande utsvävningar av det platsfilosofiskt genetiska slaget hos Richard Dawkins i Illusionen om Gud. Dawkins spekulerar även utifrån språkljud, platser och genetiken utifrån idén om det naturliga urvalet. Dawkins formulerar tankar om att språket kan utvecklas genom en kulturell motsvarighet till slumpartad genetisk glidning. Han tänker sig olika förutsättningar för hur utvecklandet av vokalljud kan ha gått till. Dawkins menar att det kan höra ihop med förutsättningar utifrån olika terränger utifrån vad olika överlevnadsstrategier innebär.

Många filosofer brottas också med dessa distinktioner utifrån sina olika begreppsbildningar om natur kontra kultur eller hur den ena av dem kan ta överhanden över den andra. Det är lite svårt att veta vem som har svaret. Varje tänkare utgår från ett specifikt schema för sin argumentation. Vad är det som egentligen behöver granskas närmare? Är det den filosofiska undersökningen av vetenskapen som behöver granskas närmare? Eller handlar det om att man behöver granska den värdegrunden filosofiska den undersökningen bygger på? Tänk om förklaringen finns i mellanrummet mellan dessa distinktioner? Mellanrummet tänker jag mig som ett platsfilosofiskt transittillstånd som ger upphov till instabilitet eller ett ständigt uppslag av för många platsfilosofiska utgångar.

En estetik vandring utifrån platsens idé med Immanuel Kant. Kant ser på tid och rum som något subjektivt och idealt, något som kommer ur vårt förstånd som ett schema man kan arbeta sig fram med och där allt kan registreras.

Kan Kant hjälpa mig i mitt platsfilosofiska sökande? Stämmer det att förnimmelsen kan vara en sanning eller bärare av en specifik kunskap? Går det att upphöja det man förstått om en plats till allmän lag – kommer alla andra platser verkligen att gå med på det? Vi kan leka med tanken om platsens estetik utifrån Kant. Det kan handla om det sköna eller det sublima. Skillnaden mellan det sköna och det sublima handlar om olika spänningsmoment. Det sublima berör spänningen mellan fantasin och förnuftet. Det sköna berör spänningen mellan fantasin och förståelsen. Platsens idé utifrån det sublima kan bli hur man kan se det utifrån sett – möjligen i termer av de yttre boulevarderna eller som en platsbeskrivning för att jag inte ska tappa bort mig i mina gamla kvarter. Platsens idé utifrån det sköna kan handla om inlevelsen och det inre livet – man kan tappa bort sig i sina gamla kvarter invändigt i jakt på självkänslan. Vad är det jag vill med det och en platsens filosofi med försök utifrån Kant. Utsätta Kants kriterier om kvalitet, kvantitet, relation och modalitet för några platsförsök – om det nu håller.

Kant menar att omdömet är intresselöst. När man rådfrågar en filosof måste man alltid vara mycket uppmärksam. Det är trots allt friheten i förhållande till det en filosof resonerar om som ger upphov till omdömet. Det intresselösa som kvalitet handlar inte på något sätt om att vara likgiltig. Det handlar om den skarpa blicken. För det behöver man gå in i Kants idéer om begäret. Begäret som den högsta sanningen eller den absoluta lögnen.

Plats utifrån Kants estetiska filosofi som existensform. Existensformen som kvalitet om det sköna frikopplar Kant från existensen där han söker objektifiera denna erfarenhet som intresselöst och i och med det göra det till ett frihetsalternativ som kreativ handling. Vilken plats kommer att tillåta det bäst? Det handlar om platsens rena framträdande till skillnad från att existensen i sig upplevs som behaglig. Det intresselösa estetiska omdömet är fritt. Vad säger jag med detta med platsen och Kant? Att det estetiska omdömet om en plats aldrig kan vara rent, dvs. fritt från intresse.

Kants kvantitet om platsen. Platsen som förnimmelser för resonerandet och framförallt realiserandet av den ideala sammanslagningen av två sidor av omdömen. Är det inte det man gör när man går över en ny storslagen plats? Allt man kan fånga utifrån platsens historia och mentalitetens minne. Kvantitet leder till det universella och dess allmängiltighet. Platsen som metafor och strävan. Kant förespråkar att en estetisk upplevelse innebär att inbillningskraften och förståndet harmonierar med varandra.

Relation i Kants termer är väl ändå att börja närma sig en flanörsidé? Att man fäller omdömen om det som är vackert och att det är något som sker i förståndet med fantasins hjälp. Ett samhälle kan man avkoda genom dess byggnadskonst. Relationen Kant anspelar på ska vara ändamålsenlig utifrån den enskildes relation till sig själv, sin fantasi och sitt förstånd till vad det estetiska kan handla om.Relation, jag läste en recension om den norske flanören Tomas Espedals bok “Bergensare”. Han fick väldigt starka omdömen. Det drabbade mig intravenöst när recensenten skrev att Espedal skriver om platser utifrån en personlig omöjlighet. Espedal sammanfaller med vad en platsfilosofi för platsbegär kan bli.

Platsens modalitet i Kants termer – här måste jag kunna visa vad som leder fram till ett visst resonemang. Hur många platser behöver man experimentera med för att kunna skapa ett hållbart bevis för alla platser? Roland Hallgren har i sin bok Plats och känsla försökt förstå hur det kan ligga till utifrån olika parametrar om platser. Kants föresats om plats och modalitet handlar om vilket sätt omdömen fälls på. Hallgren skriver på ett tidigt stadium i sin bok: ”För en plats som står en nära finns det flera olika platsstrategier”. Det tycks handla om att kunna motverka det för många olika platser kan ge upphov till – den existentiella rastlösheten. Med Hallgren kan det istället handla om att genom personliga platser skapa egna harmoniska små mikrokosmos. Platsens modalitet behöver inte innebär ett svar, det är bara ett sätt att försöka resonera sig fram. Att resonera mig fram genom dagspromenader tvärs genom hela Paris har jag provat. Det är bara att ta en metrolinje och hoppa av på en ändstation och sedan börja arbeta sig inåt. Erfarenheten blir en helt annan än om man börjar i centrum och arbetar sig utåt. Man kan resonera sig fram på olika sätt. Ska man se det som olika former av andetag utifrån platsens betydelse? Skillnaden mellan inandning och utandning beroende på om man arbetar sig inåt eller utåt utifrån Paris stadsrum. Syftet har varit att arbeta in stadskroppen i mitt kroppsliga minne för att förvandla det till ett bättre förstånd. Enligt den franske filosofen Jean-Jacques Rousseau måste en tänkare förmå sig att låta sitt liv stämma överens med den egna filosofin för att kunna övertyga andra om den. Det är här Kant kommer till korta. Kant tänker sig att platserfarenheten är friställd från det sensoriska.

Troligen var det lite för tidigt för 1700-talet att göra det man med nutida datavisualiseringar tänker sig och Kants modalitet kanske kan förnyas till ett modus urbanus. I oktober 2016 sker det största toppmötet i FN: s historia i Quito. Den digitala plattformen cityvis.io för Habitat III vill offentliggöra olika former av material om platser. Hittills dolda akademiska studier eller annat relevant material andra intressenter ruvar på som inte är lätt att ta del av. Man vill samla visualiseringar, filmklipp, augmented reality och infographics om alla världens städer på en plattform. Frågan är om det är platserna eller plattformen i sig man kan upphöja till en platsens imperativ med hjälp av Immanuel Kant.

En plats och Kants distinktioner mellan ändamålsenlighet och ändamålslöshet. Vilka omdömen krävs? Reflekterande eller bedömande om platsen? Ett exempel genom den svenske Parisflanören Adolf Hallman. Med Hallman kan jag kanske applicera tanken om platsens ändamålsenlighet, i betydelsen att platsens beståndsdelar har en uppbyggnad som syftar på en storstad, som när Hallman skriver om Paris och drabbas av platsen där platsen har för avsikt att bevara sig själv till varje pris. Adolf Hallman beskrev det så här redan 1930–talet i På baren och bakgator att: ”Storstaden har fångat dig, droppat sitt gift i din själ, sin oro i ditt hjärta”. Eller handlade det om Kants ändamålslöshet utifrån platsens sida, dvs. det var dess sett att föra idén om platsens art vidare?

Den svenske filosofen och författaren Lars Gustafsson uttrycker i sin fragmentsamling “Skärvor och Brottstycken” att Kants filosofi luktar gammalt trä och Nietzsches av upphettad metall. För att kunna vara avslappnad av skulle jag behöva Walter Benjamins hela Passagearbete. Gustafsson kommer i denna fragmentsamling in på det som alla Benjaminläsare längtar till: ”Vi är inomhus som i drömmen, och plötsligt blir det klart att 1800-talets Passager aldrig hade varit möjliga utan upplevelsen av Sydfrankrikes platanskuggande, vänligt sociala gaturum, ett minne av romerska rikets vällustiga avnjutande av en värdig offentlig miljö”. Där den vita stenen andas och förtvinar.

Paris med Passagerna var det första steget för tillblivelsen av flanörens manér inom 1800-talet. 1900-talets flanörrörelse sattes i Wien där flanören inte längre kunde röra sig ostört utan även krockar med stadstrafiken. Robert Musils romanverk Mannen utan egenskaper gav förutsättningarna för 1900-talets flanörer. Frågan är om flanörsiden är mest bundet till storstadsidén eller huvudstadstanken?

United Nations Department of Economic and Social Affairs/Population Division har gjort beräkningar på vilka städer som kommer att vara de mest befolkade framöver. Det finns en uppdelning med nedslag om 1950, 2000 och 2015 än så länge. 1950 var New York, Tokyo och London de tre mest befolkade städerna. År 2000 är Tokyo, Mexico City och New York de tre mest befolkade. År 2015 är Tokyo, Delhi och Mumbai de tre mest befolkade städerna.

(Mina gamla platser faller ur statistiken Paris hamnade på 5: e plats redan under 1950-talet. New York har helt fallit ur statistiken för de tio högsta placeringarna redan 2015. Dessa två platser har jag ofta slagit ihop till en tredje metafor – en plats på världskartan.)

1950-talets städer beskrevs som magiskt skimrande samtidigt som deras inneboende mörker gjorde dem ogenomträngliga. Den svenske journalisten och signaturen Jolo (Jan Olof Olsson) skrev om kontrasterna på flera av sina resor. Jolo fångade konsensus i Dublin, Chicago, Krakow, S: t Petersburg, Helsingfors och Stockholm.

Claes Thor är ett mer sentida svenskt exempel på en man som fört flanörtraditionen vidare. Claes Thor har skrivit om Shanghai, Peking, Budapest, Berlin, Prag och Wien.

Vad kommer ur flanörperspektiven framöver? Passar Creative Cities begreppet den nutida flanören som vill fånga avantgardets rörelse? UCCN (Unesco Creative Cities Network) har 116 olika städer i sitt nätverk. Är det inom dessa 116 städer man ska söka svaren? Är inte Creative Cities begreppet alltför ekonomiskt laddat för flanören? Om flanören ska söka det äkta idag inför framtiden – vad blir det?

Jag kan ställa om min fråga: vad kommer ur flanörperspektiven framöver? Begreppet i sig antyder en västerländsk heteronormativitet. Flaneus är ytterligare en variation. Utöver detta torde man även kunna genusutveckla flaneurperspektivet långt utanför normativiteten.

Den filosofiske resenären Eric Weiner har skrivit i sin bok “The Geography of Genius” om vilka platser människor kan förväntas vara mest framgångsrika på. Weiners uppräkning innefattar: Aten, Hangzhou, Florens, Edinburgh, Calcutta, Wien, Silicon Valley. Eric Weiner gör den beräkningen att den platskultur som ger bäst förutsättningar för kreativ utveckling är den plats som bäst hanterar ambiguitet.

Frågan är var den bästa platsen för en sund kropp är med tanke på hur förutsättningarna i världen är i ständig förändring.

Hur gör man en platsfilosofisk estetik kombinerat med luften och den fria viljans fysiska förverkligande?

Vilken plats, eller platser skapar de bästa förutsättningarna för en hälsoinriktad platsfilosofi för flanörer? Cities & Health är en ny tidskrift som kommer att släppas först 2017. Cities & Health rör sig åt det hållet (stadens design, landskapet, stadens policy, hållbarhet, folkhälsa, beteendevetenskap, cultural studies, kommunikationsexperter och konstvetare). Vad kan lekmanna perspektivet erbjuda som experter inte kan räkna ut?

(Hoppas du läst denna som ett utkast till ett modus urbanus.)

©Philippa Göranson, 2016-08-13

[philippagoranson]

Essay: Can we move beyond lip service on the art of listening in health care?

Listening in healthcare can be a very complicated matter and concerns many different aspects of healthcare encounters. Even if one spon­taneously asks oneself: is it not the most common sense thing to do? I have been caught up on this topic due to previous bad experiences in healthcare where the lack of listening properly or even listening at all was completely missing – even if I was speaking to a healthcare professional in the same room. After some time I got to read the medical journal, that one of the specific non-listening physicians I had met had been writing and realized I was only being observed. I even remember very clearly hearing myself saying repeatedly: “Can you listen to what I say?” Even that did not help. It just made things worse. It is as if it is up to the healthcare provider to decide when or even if to ask the relevant questions or if they even are going to be asked at all. That way of being from the healthcare provider’s side of things was just pretending to hear. At this point of time in my life, I had had physicians whom all acted likewise – they always excluded what I was trying to communicate and they got it all wrong. Incorrect diagnosis, wrong treatment ideas, no one even tried to put my story together properly. They seemed to want to start the discus­sion from a set of ideas or rules on how to ask questions and what questions to ask that does not always correspond to what the patient really has to say. Their structure of things made their compre­hension of why I even was attempting to get help into complete chaos. Later I came to understand what I had been subjected too and this is part of why listening in healthcare does not always work. The culture of evidence-based medicine is reductive, it simplifies and cannot handle the complexities of life that need to be interpreted and put into context. Evidence-based medicine devalues individual experience. At this early stage, I started to wonder if I no longer could express myself. I have previously been a radio broadcaster and am a verbal person and I like words so that was not the problem. Actually, being a humanities student made me react to this hierar­chical structure very strongly and it made me lose faith towards the realm of healthcare and start to question their knowledge production. If they can’t listen properly what else are they getting wrong about medicine as a scientific field? Are healthcare providers not supposed to be humani­sts too? My idea of the humanist is about meeting the other and this kind of reasoning can be found in diffe­rent philosophical schools of thought. At one point when the lack of listening was exceptionally frustrating, I was asking myself: do we have to make listening in healthcare a human right? That was when I started to go to the university library to find books on other people’s experiences of healthcare and it was very helpful to see other people had noticed the same things as I and, sad to say, had even had even worse encounters than my own. I even started reading books on the medical law to help me get a bigger picture of the idea of healthcare.

In the end, everything turned out, but I had to force my narrative structure and storyline on top of how healthcare providers usually want to be addressed. I was sensing a cultural sensitivity problem and this aspect is imperative to better listening in healthcare too. Interaction is on the linguistic level. I understood I had to find a medical professional that comes from a different culture where the speaking structure is different from the Swedish way. Medical humanities research has also explained that to get the right diagnosis the patient and healthcare provider need to be on the same page when it comes to the use of words and their interpretation and how they are applied to make sense to each other. Not just that, Iona Heath explains in an essay in the BMJ: “Clinicians need to be just this – experts in the feelings we attach to words – otherwise our efforts to communicate with our patients will oscillate between the tedious and the cruel”i. There is also another side to this aspect explained by Dr. Gavin Francis in Aeon magazine “Storyhealing”: “War metaphors in health and healing can be valid, but bringing different ideas to the mind of each patient – an appreciation of storytelling can assist physicians to choose the metaphor that will best help their patients, and also help patients articulate inner experience to their physician.”ii As a patient, one always has a story of some kind that cannot be neglected. My new encounter in healthcare was to become a part of a shift of paradigm in my life. The big difference now in this new encounter also was the attitu­de this person had towards information and sharing ideas with the patient and the appreciation shown towards a complete story as to how I also had come to understand myself. This medical professional happily took everything I had and replied: “Great! Otherwise, I would never have understood!”. At the time it felt like a surprise and that this person was actually listening. I could see it in the facial expression that something else was going on inside of this person. Later this doctor told me he even had one of my illnesses too. What actually happened here was the combination of the how and the why I even got ill and where a medical professional was integrated as in a more interpretive listening process. I was also due to all this going through a change from just being a passive patient into a combination of what is known to be called the healthcare consumer (knowing my patient’s rights and becoming better informed) and being the expert patient (knowing how to strategically manage myself through the healthcare system). This was something I had to learn by myself. One needs to be empowered before even being listened to properly in healthcare.

I have read a big amount of patient experience books, pathologies, medical humanities research and research by the nursing science. I do not even have to look far into social media to stumble across a Twitter account defending patient’s rights where the beholder of the account defines the account with a message that says: “I am not a slave; I will not comply to tyranny”. Not being listened to is tyranny. On Twitter, I have also come to know the phenomenon called the patient’s voice. The fact that this has appeared also shows it is close to a human’s rights issue. The concept of the patient’s voice can be interpreted as the downside of the patient’s status in healthcare. The attempt of the patients’ voice is about something else. Patient’s Voice is about change and is challen­ging to the healthcare structure. The patient’s voice phenomenon wants to create a better awareness on how hard thing can get for a patient and is a way of questioning what is not working. On a personal level, it can also be about just being listened to in healthcare in a one-to-one situation. The idea of doctors’ ears is not being used very much on social media to debate the lack of listening in healthcare. At least not yet.

There are a variety of hashtags on Twitter and one even explicitly concerned with listening to patients’ #listentopatients. It is as if healthcare providers have a particular form of hearing im­pairment. Hearing is easily something that can get mixed up with listening. Listening is a much more complex process than just hearing. The big difference between hearing and listening is that listening is part of a hermeneutic process that integrates both intellectual and emotional capacities to extract the correct meaning.

How can patients be perceived through the lens of listening instead? A listening culture or feature is about trust. Researchers have come to regard, especially three components as most important to listening: empathy, being inclusive and supportive. This is not easily handled in healthcare. Still, is it not just common sense?

Over and over again, I see the same thing being pronounced and debated about healthcare and the big problem with not being able to deliver the right care and attending or even listened to. Head­line such as: “Healthcare has to be able to listen to patients” just appeared the other day in the Swedish daily newspaper Svenska Dagbladetiii. The headline concerned a report from the Swedish authority that analyses healthcare from the point of view of the population, Myndigheten för Vårdanalys, “Vården ur befolkningens perspektiv” (Healthcare from the point of view of the population). Only one third agree to that Swedish healthcare is actually working. There is an international comparison and Sweden is not the worst country in the world but the strangest thing is that Sweden, in general, is understood as a democratic country, not in the healthcare setting. The level of patient participation is 69 %. Germany is ranked as best on patient participation by 87 %. Do healthcare professionals explain things so patients understand? 78 % of the Swedish population responded positively. In Australia, 93 % of the population responded positively to having being addressed comprehensively. Only 43 % of the Swedish population says doctors even discuss treatment options and risks. Australia ranks highest at 69 % in this regard in the report. Only 23 % of Swedish patients get a care plan to help them navigate their care. In France, the population says yes to this by 53 %. This just to give some examples. The study is the results from The Commonwealth Fund International Health Policy Surveyiv. Why are the cultural differences as big as they are? Does it have to do with if a country has a national health literacy strategy or not? More in-depth political, cultural and historical processes can give explanations beyond that I am sure.

What I am missing from this Myndigheten för Vårdanaly is the phenomenon the patient’s voice – the struggle people have in the healthcare process. How hard it can be to even get the correct diagnosis and integrated care needed. At some point, these repetitive stories people have need to stop. An article by Tiffany Simms,”When ‘Once Upon a Time’ gives us more than a story” gives a very good account of these problems and the problems patients encounter in terms of not being listened too. Tiffany is discussing from the listening point of view and her example concerns people with autoimmune disease and how many years it can take for the patient to even get the correct diagnosis. In the meantime, many are being really badly treated even when it just comes to communicating. It is sort of like a battlefield about what symptoms seem to be real or not or how they can be interpreted and Tiffany adds: “Even when patients are listened to, healthcare providers only care for the symptoms and leave root causes unaddressed.” Lab reports trump patient experiences. Or as Tiffany is explaining and I am sure many patients or their next-of-kin will recognize themselves in the following statement: “A doctor should be a partner in making you healthy, but for the most part I feel on my own. I feel like a doctor should say, ‘Okay let’s start with the most natural, least invasive way to help you heal, and if we need to go to a stronger regimen then we will’ instead, it’s always ‘here’s a medication with worrying side effects. Next, please”v.

If I go hunting on different social media channels or patient engagement accounts for patient advocacy, health literacy, patient participation, patient associations, individual patient bloggers, and even medical professionals – they are more or less telling the same story of what a catastrophe the lack of listening is in healthcare. Have we really looked deeper into what this lack really is about?

It is not about the lack of soft skills. I just need to look closer at what narrative medicine is about and the threat against it to understand how hard listening in healthcare is. On Wikipedia the obstacles against narrative medicine goes like this: “People who are physicians have been trained to believe, that it is a scientific objectivity that makes them most effective, in their efforts to un­der­stand and resolve the pain that others bring them, and a mental distance that protects them from becoming wounded from the difficult work. Objectivity, empathy, and global thinking are stated not to be incompatible with a degree of dissociation from the patient’s suffering that is sufficient to protect oneself.”vi It is not only that. I have looked at textbooks that are passed out for educational use on patient communication and these texts always look good. The bigger problem against listening in healthcare is what is being said and can be taught in medical education classes. I even attended a medical class once just to see for myself what is going on and what is being said and how long it takes to see and hear how healthcare professionals are taught not to respond to patients and to deliberately not pass diagnosis out even if that is what a patient seems to have. I only needed to be a fake medical stu­dent for one medical class and it all happened within ten minutes. I know this is not represen­tative for the whole, at the time I told myself I do not need to see more because I was sure it might even get worse if I saw or heard more. The culture of oppression in healthcare is real. My observations can be confirmed with the help of the medical memoirs of the Swedish novelist and doctor P. C. Jersild. In his memoirs, he explains how it usually works, when and how doctors are taught not to listen to the patient’s story. When practitioners train medical students in the healthcare setting, they also teach them how not to listen. If a medical student tries to be attentive and lets the patient speak from beginning to finish the teaching practitioner, will make sure to correct the medical student and then make sure to show how the patient’s voice is not allowed by being interrupted as soon as possiblevii. This is just one part of the problem with listening in healthcare. Other sides of these non-listening behaviors are actually even stranger than what has just been said. Doctors are train­ed to think thematically and they at times do not even let the patients explain themselves. Doctors are not trained in how to make meaning out of how a patient narrates. Already just on their way to greet a patient in the waiting room, they can have decided beforehand what the pati­ent has or that patient does not have anything at all. At least 20 % of all misdiagnosis are due to this kind of error in thinking strategies according to Dr. Jerome Groopman. Doctors do not want to interact with people with mental illness conditions. Doctors do not even want to interact with people who cannot communicate properlyviii. I remember sitting in a waiting room and a woman next to me grabbed my arm and asked what is wrong with doctors. It is as if they already have made up their mind on what one is seeking help for even before one has had the chance to explain oneself. The healthcare setting is disturbing and constructed in such a way that it actually creates harm. It is not easy to make oneself heard in this environment.

In the healthcare debate, there are very many different managerial concepts that might just help make things worse. Sometimes it almost seems like different managerial concepts for healthcare are most suited for debate and not the reality of healthcare. The debate is of course very interesting to follow, but does it really help? Are these concepts really helping to reshape the culture of healthcare? The situation is very ad hoc concerning who actually listens to the patient or not. All these different managerial concepts are tiresome. And the only thing they really have to do it to listen to the patient to get it right. Physicians often deliberately choose not to take into account what the patient actually is saying and why it counts. Even when a patient is just trying to give correct information or add on details that have been lost in the continuum of the healthcare process.

The debates I have been reading concern the following concepts:

New Public Management. The patient is currency.

Patientcenteredcare. The patient is an individual. The patient is interpreted by others.

Valuebasedcare. The patient reported outcomes measures. Doing the right thing. Patient participation.

Personcenteredcare. A holistic approach to the patient’s life and health issue/s. Patient awareness.

Healthcare providers do not discuss prognosis or what the patient can do to improve their quality of life. The providers do not even explain what steps are to come next regarding treatment plans. They do not let the patient be involved in how to help the patient also help themselves to better healthcare outcomes. Listening to patients is also about giving patients the right kind of infor­ma­tion at the right time. The other day I read a blog entry by the most prominent Swedish e-patient Sweden even has, Sara Riggare.

Sara Riggare explains that being an informed patient is a provocation. She uses herself as an example to show how the culture of healthcare works to force her to diminish herself instead of making her more competent or even feel better. Just trying to ask well-informed ques­tions is a provocation on the healthcare structure. Instead of being able to knowingly being a part of a patientcentreredcare situation where the physician actually listens to her questions she is for­ced into a physciancentered way of managing herself and it makes her play the role of being ignorant. The culture of healthcare is always very apparent for a patient and Sara Riggare has learned she has to play by the rules as of an Albert Einstein quote: “You have to learn the rules of the game. And then you have to play better than anyone else.ix” Sara Riggare is an empowered patient who only wanted to be listened to. She just had concerns regarding medical research in regards to herself. The saying goes that listening is a key to leadership. Suzanne Gordon explains in a BMJ Opinion article: “Research shows that hierarchy, by its very nature, dramatically reduces speaking up by those lower down in the pecking order. We are hard-wired, then socialized, to be acutely sensitive to power, and to work to avoid being seen as deficient in any way by those in power.x”

A tweet concerning what patient empowerment is about also revealed how physicians misinterpret a well-informed patient and patient empowerment due to the hierarchical culture of healthcare: “Empowerment isn’t about bestowing one’s power on another. It’s education so they find their own power.” Team. Intake-Me retweeted @Intakeme

Another way of putting it more nicely concerning listening in healthcare is how Sharon Roman explains herself in the British Medical Journal: “While years of experience may make way for a knowledgeable doctor, years of listening help make a great one. I am aware that I may talk too much, but I also need to feel heard.” There is more to it than this. Often a practitioner will think he/she has seen it all before. Sharon adds on: “Listen to what I have to say without preju­dice, not racing ahead to the answer you may or may not already know”. Sharon then explains patients have to be let to ask questions, even if the questions are no good, answer anyway xi.

I have been listening to stories in healthcare and listening still seems to be something that mostly happens by chance. Dr. Alicia Conill shows a typical example of that when one of her patients takes her off guard by making her listen to her patient’s story. Dr. Alicia Conill concludes on listening in healthcare that: “Listening to someone’s story costs less than expensive diagnostic testing but is key to healing and diagnosis” xii.

The biggest obstacle for a better culture of listening in healthcare is the hierarchical structure and how doctors are trained to have the status of a God. At times, it can even be worse than this be­cau­se this Godlike doctor does not even talk to the other semi-Gods in the healthcare setting or care to listen to when the patient explain why they need a certain treatment. This makes the doc­tor the same thing as an autocrat. The someone listened to. Not the listener. This is the oppo­site of what a culture of listening is about. I have read a patient story about exactly that when an anesthesiologist refused to listen even if there are national guidelines on how to proceed and it was exactly how the patient was explaining why the treatment she already was on was essential to her before surgery. The problem being the anesthesiologist was trying to remove it. The medical professional’s response went like this: “I am not going to let this happen – a patient is trying to tell me how I am supposed to do my job.” The author Åsa Moberg who wrote about it called her article: Doctor’s prestige is lethal xiii.

I want to focus on the most typical concepts used and the Sara Riggare blog entry put it into place. The dichotomy patientcentric versus physciancentric. If you take a closer look and think about these definitions you should be able to see how narcissistic they both are. The idea or ideals of listening in healthcare need to be rethought and restructured in terms of communication struct­ures. Communication is still seen as speaking “which unfortunately is still a phallogocentric enterprise” according to reasoning on the practice of interlistening by Jaishikha Nautiyal in the Inter­national Journal of Listening demonstrates that since nobody listens to this it wrecks the cultural practice of listening itself. We need to make way for the Silent Other in the part of the listening process. Communication is a lost project. “And while speech thinks that it is whole and healthy, it does not realize that the denial of listening as a lost and melancholic object only thrives in the pathologies of speech. In sickness and in health: there is no speaking and thinking without liste­ning”. Patients are often interrupted within seconds. There is almost no room for them to voice their concerns properly. No time to stop and think and for the healthcare provider to really under­stand what good listening can do to enhance their own professionalism. I have seen figures saying patients in Sweden get 18 seconds to explain themselves, in France 23 seconds and appa­rently in England as much as 54 seconds before they are interrupted. The act of listening is both an empathic and an ethic approach toward the Other. The problem in the healthcare culture in regar­ds to listening is that it is not seen as an active process. In traditional communication theories, lis­te­ning is excluded from the participatory dimensions of sensing in communicative experiences. “There is a homological pattern to the absence of listening from the academic discipline of com­munication that privileges speech acts and speech making”xiv. This is also typical of the culture of the west. This way of thinking mirrors democratic processes in the western school of thought. So, is a culture of listening in terms of democracy going to come from the East? Or am I just stuck in stereotypes…

Dr. Danielle Ofri explains from her book presentation on “What patients say, what doctors hear” that doctors do not wish to let patients voice their concerns properly because they think it will take too much time. A study she comments upon explains that patients do not really need as much time as doctor’s fear. The patient really needs something between one and a half minute and four minutes to explain themselves properly. She also adds on that doctors loathe informed patients. Even if the debates say they are for. Doctors prefer to work against this development xv. The art of listening in healthcare has still a very long way to go. Some time ago Sara Riggare posted on Twitter that if she only did as her health provider said she would be worse off. Sara Riggare also added in that healthcare providers need to be more attentive to patient information needs. The fact that she is a successful patient is because she at least is listening to herself and making sure she is properly informed. No wonder people are all over the Internet, health apps and social media. The Internet always gives the impression of listening. The biggest truth of them all is that it is not a health professional who is the best listener. A fellow patient is often the one who best understands another patient’s needs. One just has to start hunting on different social media and find bloggers to realize how it all really works out. Being a listening officer on the Internet is mind blowing in this regard. Another example I can add in to make you, the reader, think a bit more is from when I a few years ago I read an article in The Language of Caring about a cancer specialist who herself was attained by cancer. She stated that it was first after being a patient herself that she truly understood what patients need to know. My question to this is: why does medical training not include this or even think it by itself? Why is medical education not teaching listening to patients? Today it is all still called communi­cation. How much can narrative medicine really help to turn the culture of healthcare into a listening one?

What do we actually need as a remedy against the non-listening culture in healthcare? The culture of listening is about openness and awareness. Still, maybe we need a managerial concept or policy of listening in healthcare. If we do not think about it before acting upon it nothing will change. Change can start bottom up or top down. The culture of healthcare needs a serious shift towards what the culture of listening is about. I am not sure it is going to work by itself from the bottom up.

Health policy, in general, is based on evidence-based medicine and founded on utilitarianism or egalitarianism and the values of clinicians are hopefully deontological. The last commitment is, according to Iona Heath, “poorly understood and little appreciated by policy makers, whose priorities relate to population or societal levels. Yet, without this foundation in deontology, patients would find themselves unable to trust clinicians, with less efficiency at societal level”xvi.

There is a need to make way for change. A policy is needed since there also is a need to be able to evaluate. To begin, the deve­lo­pment of patient policy to make sure legislation and organizations act accor­ding to how a liste­ning policy that empowers patients and at the same time enhances professiona­lism of healthcare providers to become better listeners. The making of listening policy sculptured to align the patient experience in accordance with what modernized patient participation is. Patients need to be included in the making of listening policies. It is time to move beyond lip service on the art of listening in healthcare.

©Philippa Göranson, Lund, Sweden, March 2017

I am open to the idea if others want to share this blog content on other publication forums but I ask to be contacted first and want to know where I am agreeing to before and want a reference. A shortened version can also be discussed as long as the meaning of this text is not altered.

This essay is originally written for http://www.globallisteningcentre.org/ and published by them.

This essay has been published as an entry on Sweden's first patient association for patient safety http://www.patientperspektiv.org/ Patientperspektiv on Twitter: @PatientPersp

This essay has been published on the Dahlborg Healthcare Leadership Group. Thomas Dahlborg is Studer Group Coach & Speaker, President of DHLG & Author of the forthcoming book: From Heart to Head and back again. Thomas Dahlborg is debating on the cause of relationship-centered care and empathy in healthcare. Thomas Dahlborg on Twitter: @tdahlborg

This essay has been published on Healthcocreation forum in Spain. Healthcocreation is part of the first Patient Experience Institute in Spain iexp. One of the founders Carlos Bezos Daleske has made this happen. On Twitter: @Carlos_Bezos

References:

Dr. Alicia Connell, www.npr.org/templates/story/story.php?storytold=100062673

Suzanne Gordon, blogs.bmj.com/bmj/2017/01/26/Suzanne-gordon-on-soliciting-input-not-just-listening

Dr. Jerome Groopman, https://www.youtube.com/watch?v=j3XxS-p31qY

Dr. Jerome Groopman, https://www.youtube.com/watch?v=h0AEGnQ0L5s

Dr. Gavin Francis, https://aeon.co/essays/medicine-and-literature-two-treatments-of-the-human-condition

Iona Heath, http://www.bmj.com/content/355/bmj.i5705?utm_source=twitterfeed&utm_medium=twitter

Dr. P.C. Jersild, Mina Medicinska Memoarer, Albert Bonniers Förlag, Stockholm, 2006

Åsa Moberg, https://turtagning.wordpress.com/2015/11/08/lakares-prestigelystnad-kan-fa-dodlig-utgang

Myndigheten för Vårdanalys, www.vardanalys.se/Rapporter/2016/Varden-ur-befolkningens-perspektiv-2016--jamforelser-mellan-Sverige-och-tio-andra-lander

Jaishikha Nautiyal, www.tandfoline.com/doi/full/10.1080/10904018.2016.1149773

Dr. Danielle Ofri, http://www.youtube.com/watch+v=mv0R2PXZHSQ

Sara Riggare, www.riggare.se/2017/02/18/patientcentrerad-eller-personcentrerad-vard-for-lakarcentrerade-patienter

Sharon Roman, blogs.bmj.com/bmj/2017/02/28/sharon-roman-notes-from-the-less-comfortable-chair

Tiffany Simms, https://tincture.io/when-once-upon-a-time-gives-us-more-than-a-story-f312734c2382#.5o7ttqfk0

Svenska Dagbladet, www.svd.se/sjukvarden-maste-kunna-lyssna-påa-patienterna

Wikipedia, https://en.wikipedia.org/wiki/Narrative_medicine

Footnotes:

i http://www.bmj.com/content/355/bmj.i5705?utm_source=twitterfeed&utm_medium=twitter

ii https://aeon.co/essays/medicine-and-literature-two-treatments-of-the-human-condition

iii www.svd.se/sjukvarden-maste-kunna-lyssna-påa-patienterna

iv www.vardanalys.se/Rapporter/2016/Varden-ur-befolkningens-perspektiv-2016--jamforelser-mellan-Sverige-och-tio-andra-lander

v https://tincture.io/when-once-upon-a-time-gives-us-more-than-a-story-f312734c2382#.5o7ttqfk0

vi https://en.wikipedia.org/wiki/Narrative_medicine

vii P.C. Jersild, Mina Medicinska Memoarer, Albert Bonniers Förlag, Stockholm, 2006

viii https://www.youtube.com/watch?v=j3XxS-p31qY & https://www.youtube.com/watch?v=h0AEGnQ0L5s

ix www.riggare.se/2017/02/18/patientcentrerad-eller-personcentrerad-vard-for-lakarcentrerade-patienter

x blogs.bmj.com/bmj/2017/01/26/Suzanne-gordon-on-soliciting-input-not-just-listening

xi blogs.bmj.com/bmj/2017/02/28/sharon-roman-notes-from-the-less-comfortable-chair

xii www.npr.org/templates/story/story.php?storytold=100062673

xiii https://turtagning.wordpress.com/2015/11/08/lakares-prestigelystnad-kan-fa-dodlig-utgang

xiv www.tandfoline.com/doi/full/10.1080/10904018.2016.1149773

xv http://www.youtube.com/watch+v=mv0R2PXZHSQ

xvi http://www.bmj.com/content/355/bmj.i5705?utm_source=twitterfeed&utm_medium=twitter

[philippagoranson]

Bästa omöjliga arbetsgivare,

Jag menar inte att du är omöjlig i egentlig mening. Jag menar att jag tror att jag är på jakt efter en mer omöjlig arbetsgivare än de möjliga som skriver jobbannonser som tråkar ut mig. Var hittar jag den arbetsgivare som skriver jobbannonsen som roar desto mer? Är det inte frågan man främst behöver ställa sig som arbetstagare?

Har du som söker nytt jobb reflekterat över den retoriska utvecklingen av jobbannonser? Det torde vara en fråga av intresse för Linkedin medlemmar, arbetsgivare och rekryterare. För länge sedan gällde det att vara socialt kompetent och ha många bollar i luften. Man ska vara anpassningsbar. Numera ska man vara passionerad och driven i allt. Vem är den människa som stämmer in på de skiftande beskrivningarna? Trender växlar. Människan består.

Man kan också utsätta sig för algoritmernas magi för att se om de kommer på rätt förklaringsmodell. Dessa algoritmer vi alla kan utsätta oss för är understundom lite klurigt att förhålla sig till. Frågan är om man ska se dem som verklighetsbärande eller som astrologiska försök. Ve den som ifrågasätter psykologiska förklaringsmodeller eller dessa kulturella normer. För det är vad dessa algoritmer bygger på. Personligen är jag trots allt något skeptisk till svaren man erhåller även om mycket i beskrivningarna låter positivt. Det jag lärde mig utifrån ett algoritm test stämmer nämligen inte in på hur jobbannonser är formulerade. Vem är den omöjliga arbetsgivare som vill ha en anställd som enligt algoritmernas magi menar att jag är:

1) Kreativ och självgående. Tar mer hänsyn till funktion än tradition. Formellt uppträdande och stelbenta regler är hämmande. Går egna vägar. Står fast vid sin åsikt även vid mothugg. Kopplar ihop saker på ett nytt sätt. Skapar fungerande arbetsrutiner i en arbetsgrupp. Vinner andra för sina idéer. Inställning att problem går att lösa. Snabb. Dynamisk. Uthållig. Viljestyrka. Målinriktad. Pratsam – även en god lyssnare. Frihet att kunna planera sina arbetsuppgifter. Agerar bättre i ett öppet arbetsklimat.

2) Nyfiken på vad som händer i omvärlden och har lätt för att snappa upp idéer som kan omsättas. Ibland kan mina nyskapande tankar vara för radikala för den organisation jag verkar inom. Min okonventionella framtoning kan av mer försiktiga personer kännas som opassande eller riskabelt. Jag litar på mitt eget omdöme även om det innebär att jag måste gå emot etablerade regler och praxis. Jag vill trots allt detta samtidigt ha en tydlig plan att hålla mig till.

Det finns till och med ett avsnitt i testet som vill förklara: ”Det här kan din chef behöva” veta (sista ordet eget tillägg):

Ditt okonventionella arbetssätt gör att du hittar nya och ovanliga lösningar. Acceptera att du vill känna dig trygg i ett beslut innan du är beredd att agera. Alltför ingående detaljstyrning gör att du tappar motivationen. Bygga en hållbar relation med dig framför bara ge instruktioner eller kräva förklaringar. Jag tillför energi i arbetsgruppen. Jag är bra på att entusiasmera, uppmuntra och inspirera andra. Inte tävlingsinriktad. Delat beslutsfattande.

Testet enligt algoritmernas magi har klassificerat mig utifrån drivkrafter. Mina högsta poäng utifrån drivkrafterna, enligt algoritmernas magi, är följande:

Individer med Kunskap som stark drivkraft är huvudsakligen intresserade av att upptäcka, söka efter fakta och information. ”Det är en glädje att veta!” En sådan person intar gärna en ”tänkande” inställning och bortser oftast från ett föremåls skönhet, praktiska nytta eller ekonomiska värde. Individer med Kunskap som drivkraft vill observera och förstå sammanhang. Ser på verkligheten med kritiska och rationella ögon.

Individer med Självförverkligande som stark drivkraft har ett starkt intresse för personlig utveckling och välbefinnande. En individ med självförverkligande drivkraft värdesätter miljöer som ger utrymme för kreativitet och nytänkande. Den personliga utvecklingen kan uttryckas på så sätt att man ha utrymme att pröva egna eller andras idéer. Inre reflektion och återkoppling är en naturlig arbetsmetod. Detta innebär att individen uppskattar omgivningar som ger tid och utrymme för detta.

Individer med Etisk – Moralisk drivkraft har en utpräglad känsla för rättvisa. Detta kan ta sig uttryck som att vilja arbeta i organisationer med tydliga strukturer, regler och gemensamma normer och värderingar. Det främsta intresset bakom denna drivkraft kan beskrivas som en vilja att stödja de ’goda krafterna’ i verksamheten eller samhället i stort. Individer med stark Etisk – Moralisk drivkraft har ett överordnat värdesystem för vad som är ”rätt och fel”, som de använder som en ledstjärna.

Individer med Omtanke som stark drivkraft är intresserade av andra människor, deras samspel och välmående. De uppfattas ofta som vänliga, sympatiska och osjälviska. De är ibland villiga att avstå från egen vinning om det visat sig att ett beslut är eller kan vara förlustbringande för en medmänniska.

Så, om jag skulle ta och omsätta allt detta enligt egna referenser vad blir jag då? Bästa omöjliga arbetsgivare jag tänker mig att du inte har något emot att jag formulerar mig mot gängse retoriska normer gällande det personliga men ändå formellt uttänkta brevet. Jag kan bitvis känna igen mig i de egenskaper som algoritmernas magi valt. Det är en tolkningsfråga hur man sedan omsätter det. Personligen omsätter jag det vid likheten Kunskap som drivkraft när jag såg filmatiseringen av Leo Tolstoys romansvit Krig och Fred och det slog mig att jag kan vara lite som den kunskapssökande karaktären Pierre Bezukhov. En bildad intellektuell som på sitt sökande sätt fördjupar sig och försöker koppla ihop sammanhangen och som läser för mycket. Det som jag formulerar här uppfattar jag inte att man egentligen ska skriva i det personliga brevet till en möjlig arbetsgivare även om det heter att man kan vara personlig.

Hur känner jag igen mig ytterligare utifrån algoritmernas magi? Funktion före tradition – vände en gång i tiden upp och ner på ett akademiskt sammanhang. Det kan ses som ett svar på tal om att gå egna vägar.

Förövrigt har jag tillfälligt dragit mig undan likt Michel de Montaigne i sitt tornrum och skrivit fritt och utan prestationskrav. Inte nog med att han hade ett eget tornrum. I det här tornrummet finns till och med ett litet sidorum med en stol i så han kunde gömma sig om han hörde att någon kom när han inte hade tid. Jag avundas honom hans förmåga till social kompetens genom att ta sig friheten att uppträda som om han inte hade det. I likhet med Montaigne gjort en helomvändning och valt att behålla mina skrivna tankar för mig själv. Utgår från andras texter med min egen utifrån egen uppfinning som en konversation. Det kan förklaras som personlig utveckling utifrån reflektion.

Den etisk – moraliska drivkraften och drivkraften omtanke är intressanta dimensioner. Jag har velat verka för att förbättra patientens ställning. Kruxet är att det är så politiskt laddat och har varit ett av de faktum som gjort att jag ens började behålla mina skrivna tankar för mig själv handlar också om en besvikelse med både bildnings- och idéklimatet i just den frågan för Sveriges del. Jag har läst andras berättelser i böcker och genom olika patientbloggar senare. Det är för många som brottas med samma problemkomplet gentemot vårdkulturen. Förra året läste jag många rapporter från Myndigheten för Vårdanalys. Jag tog väldigt illa vid mig utifrån vad deras analyser visat. Det är tur att de finns. För de ger legitimitet till det alla andra också skriver liknande om.

Vidare kan jag erkänna att mina bästa uppslag och idéer brukar komma till mig när jag inte är på jobbet. Arbetsplatsstrukturen gör gällande vissa klädval och former för uppträdande och jag är helt på det klara med att jag behöver röra på mig och ändra mellan sittande- och liggande ställning. En arbetsmetodik som liknar Maria Montessoris insikter om hur man bibehåller sin koncentrationsförmåga just genom att motverka syrebrist till hjärnan. Är det här ens begripligt för någon annan än mig själv? Men, jag skriver nu till en omöjlig arbetsgivare. En möjlig hade kanske föredragit alla gällande former som gör att man ska pressa in sig i förklaringsmodeller som gör att man blir en plattfisk. Jag vill hellre vara en lekfull och klok delfin. Så kan man inte formulera sig i sitt personliga brev. Det är det inte heller eftersom jag hittills inte kunnat hitta den arbetsannons som ens påminner om hur jag egentligen skulle vilja uttrycka mig inför rätt arbetssammanhang. Det är därför jag som bäst kommer fram till att jag behöver hitta en omöjlig arbetsgivare än de möjliga som står till buds genom diverse politiskt korrekt formulerade arbetsannonser.

(omarbetad text)

[philippagoranson]

Häromdagen läste jag en kort krönika i en svensk dagstidning om värdet av tillgång till böcker i hemmet. Först tänkte jag bara skriva av den och dela den som ett inlägg här. Vid närmare eftertanke valde jag att tänka till lite och se mig omkring.

Närheten till den fysiska boken ska betyda att det går bättre för dem som läser mer redan i ett tidigt stadium i livet. Det är snällt tänkt. Kanske är det rätt tänkt eller inte alls. Behöver man inte också att någon öppnar dörren inför alla böcker som finns i ett hem? Eller att något i den egna livssituationen gör att man vaknar utifrån en ny läs situation? Tidig läsning och förbättrade kognitiva förmågor. Jag säger inte emot men jag undrar över den här studien jag läst om trots allt. Är det formande eller frigörande läsning man försöker uppmana till med deras exempel?

Mitt barndomshem var fullt med böcker. Under min uppväxt var det ett väldigt stort avstånd mellan mig och min faders bibliotek som upptog flera delar av hemmet. Hans böcker var inga pekpinnar som sade till att man måste läsa just dem. Hans bibliotek tedde sig tyst och tillbakadraget. Hur många barn tar sig egentligen in i de vuxnas bibliotek? Eller är det först i tonåren? Förstår man verkligen vad allt handlar om i det stadiet?

Om jag istället ska välja en mer dynamisk förutsättning kring min självständiga läsning och framtiden har tillgången till goda lärare varit en bättre förutsättning än tillgången till böcker i mitt barndomshem. Utifrån hur de undervisade har jag senare i livet kommit på olika lässtrategier för att bibehålla min integritet när den varit hotad. Vad var det dessa personer lyckades så bra med? De fick mig att lyssna. Att lyssna till just dessa lärare är vad som fått det att gå bra för mig i livet. Genom deras sätt att förmedla kunskap har jag valt olika kategorier av böcker för egen del senare i livet. Det var inte de böcker som fanns tillgängliga i mitt barndomshem som har inneburit framgång för mig. Det är bokbeståndet jag byggt upp efter min skoltid, under min studietid och efter studietiden som vidareutvecklat mig. Förändringar i min livssituation som har gjort att jag sökt mig ut i helt nya områden beroende på vad som har hänt. Det är böcker på eget initiativ som är framgångsfaktorn för mig. Den frigörande läsningen, den sökande läsningen.

Krönikan jag läste om värdet av böcker i hemmet ska jag lägga in mot slutet av denna text. Det roliga med att läsa om böcker är just hur det påverkar associationsfält utifrån min egen bokhylla. Ett exempel på en person som inte växte upp med böcker i sitt hem men som blev en mycket självständig tänkare är 1500-tals mjölnaren Domenico Scandella, kallad Menoccio. På grund av sitt arbete kom han att röra sig ut gentemot personer som ingick i bokkultur. Menoccio rörde sig mellan den muntliga och skriftliga kulturen på ett senare stadium av sitt liv. Man kan sammanfatta honom utifrån hur renässanshumanister på 1500-talet förde sig och vad det bildningsidealet handlar om när de ifrågasatte auktoriteter. Carlo Ginzburgs bok Osten och maskarnavisar tecken på att Menoccio förmodligen kommit i kontakt med antikens filosofer och tolkat dem fragmentariskt och samtidigt kommit fram till något som blev en egen helhet för honom när han skapat egna resonemang.

(Det är de nya tankemönstren som intresserar mig och hur olika förutsättningar kan ge upphov till nya sätt att tänka.)

Tillbaka till Menoccio. Vad han gjorde på sin tid var helt barockt men helt i linje med vad som brukade hända med kosmologer i historiskt perspektiv som försökte motbevisa att Gud skapat världen. Stämplades som kättare, dömdes till döden eller till tystnad. Menoccio omkullkastade hela den religiösa världsordningen. Skapade en egenhändig kaosteori om alltets ursprung utifrån en förruttnelseprocess som han kände till utifrån sitt praktiska arbete där han på ett kreativt sätt kombinerade det men vad han kommit i kontakt med genom bokkulturen hans kunder ingick i. Det resulterade i följande teori: Gud, änglarna och alla levande varelser har uppkommit som maskar i en ost.

Menoccio valde trots varningar att inte hålla tyst och det slutade illa efter olika omgångar i inkvisitionen.

Böcker och bokhyllor. Jag har inte läst någon biografi över Jean-Paul Sartre än. Jag har en fransk version av hans Les Mots (Orden). På konvolutet av den utgåva jag har står det att tänker sig att hans liv kommer att sluta där det började, bland böcker. Sartre påstår att det inte var sin fars bibliotek som påverkat honom utan ett personligt bibliotek ett generationsled ytterligare ett steg bakåt. Innan han kunde läsa drömde och fantiserade han om att kunna göra det. Han beskriver bokryggar i bokhyllor, böcker som uppböjda klenoder. Böcker som stått mycket tätt eller ledigt placerade. Böcker som står rakt upp eller som ligger på tvären. Det här är inte sanningen om hur, när eller var Sartre började formas som filosof. Den processen inleddes i ett senare skede av hans liv när han satt i fängelse under andra världskriget och var utelämnad åt fängelsebiblioteket närmast till hands.

Bokhyllor med böcker kan slå helt fel. Sara Mannheimer skriver i en bok utifrån erfarenheten att växa upp i ett akademikerhem full med böcker. I den självbiografiska romanen Handlingen får vi veta att det verkar som om böcker bestämmer allt. Böcker är kvävande fenomen. Böcker betyder prestationskrav. Den poetiska skildringen i romanen är en kamp inför att övervinna bokryggarnas våld och sitt eget bildningskomplex. En protest över hur litteraturen tog makten över henne. Vad betyder framgång i livet utifrån böcker? Eller utan böcker? I Sara Mannheimer fall i det verkliga livet har det handlat om att bli glasmästare och komma bort från böcker så mycket hon bara kan. ”Jag står i Mellanrummet och tänker: Hemmet är en borgerlig instans, så snart det rymmer Mellanrum, Bibliotek, så snart det rymmer mer än sängplats och spis…”

Inom ämnet bokhistoria är man mycket intresserad av att förstå vad den bästa ingivelsen till läsning kan vara. Man tänker på det i termer av social praktik och olika innebörder. Vad läsning betyder kan vara helt väsensskilt från person till person. Vad är det man vill uppnå med sin läsning? Vad är framgång med det ur olika perspektiv? Den humoristiska romanen Drottningen vänder blad av Alan Bennett tar en helt annan vändning i frågan. Den engelska drottningen förirrar sig i slottet och tar sig ut från en sida av slottet hon inte är särskilt bekant med. Därpå råkar drottningen gå fel och tar sig ut ur slottet. Hon kliver av misstag in i en bokbuss och börjar läsa böcker på ett självständigt sätt. Lite konstigt kan tyckas när det redan borde finnas ett mycket stort slottsbibliotek till hennes förfogande, eller flera till och med. När drottningen börjar läsa utifrån egna bokval kommer hon fram till att inga böcker vet vem det är som läser dem: ”Här, på de här sidorna och mellan de här pärmarna, kunde hon röra sig utan att bli igenkänd.”

Krönika i Sydsvenska Dagbladet: ”Stapla böcker till taket”:

”Barn som har tillgång till många böcker under uppväxten får en högre inkomst som vuxna än barn som inte haft det, visar en studie som har omfattat 6 000 pojkar från nio europeiska länder under perioden 1920 till 1956.

Resultaten som publicerats i The Economic Journal kan föras samman med annan forskning som har hittat samband mellan olika förmågor och tillgången till böcker.

Även om det är den inre snarare än den yttre rikedomen som är litteraturens största förtjänst, bör dessa fakta vara en tankeväckare för hushåll som ivrigt rensar ut böcker och bokhyllor för att skapa rena ytor. Den som månar om barns framtid borde istället fylla egna väggar och golv med diktsamlingar, franska romaner, deckare i pocket och en och annan inkunabel.

Samtidigt som vi påminns oss detta kommer Kungliga Bibliotekets rapport Bibliotek 2015 som visar att biblioteken minskar i Sverige. Och skolbibliotek trots lagstiftning är ingen självklarhet.

Det är klassutjämnande platser som försvinner, institutioner som gör samhället mer rättvist. Där barn som växer upp med få eller inga böcker kan hitta till litteraturen och orden. Visst är bibliotek dyra, men bristande tillgång till litteratur medför förseningsavgifter som aldrig kan betalas tillbaka.” (Olof Åkerlund)

Den svenska krönikan är kort. Bildning enligt gammalt manér lönar sig. Den svenska krönikan berättar inte om det är formande eller frigörande läsning som leder till framgång.

När jag söker vidare i frågan utifrån studien om närheten till böcker i hemmet meddelar The Guardian att den valda tidsperioden 1920 till 1956 för nyss nämnda undersökning handlar om att se sambandet med tillgången till böcker i hemmet utifrån en epok när människor började gå fler år i skolan mer generellt sätt i Europa. Italienska ekonomer utreder frågan. Det är en kvantitativ studie utifrån antalet böcker eller bokhyllor i ett hem. Det står inget om böckerna handlar om vuxenböcker eller barnböcker eller bådadera. Svaret forskarna ger är inte entydigt om vad tillgången till böcker egentligen innebär. Antingen handlar tillgången till böcker att man läser mer eller att tillgången till böcker i ett hem är en statusmarkering. En sådan statusmarkering i sig gör att om man växer upp utifrån böckernas materialitet ser man sig själv som mer framgångsrik och därför har lättare att ta för sig av livet.

Eftersom tiden som studeras är ganska långt ifrån oss undrar jag hur man borde studera fenomenet utifrån mer sentida manér. Betyder böcker i hemmet samma sak då som idag? Blir vi påverkade på samma sätt? Vad innebär kravet på ännu längre studier i jämförelse? Tjänar man mer pengar eller tjänar pengar utifrån vad något betyder för en i större utsträckning istället? Skärningspunkterna utifrån 1968 rörelsen och digitaliseringens intrång ser jag ändå som viktiga utropstecken inför ytterligare förändrade attityder. Internet och våra mobila möjligheter skapar mer förutsättningar för litteraticitet om man tänker lite till. Jag undrar hur en studie som omfattar både flickor och pojkar av senare datum och utifrån större sociala förändringar och nya medier har att säga oss istället.

Idén om vad ett bibliotek är kan också ändras över tid. Jag undrar istället vad man kommer att tänka framöver om rörelsens bibliotek? Under solen intet nytt. De tidiga italienska renässanshumanisterna gjorde det redan på sin tid. De var först ute med Aldus Manutius portabla böcker.

”Kan man inte/inhämta språkmaterial/från rörelsens författare,/då och nu?” (Johan Jönson, mot.vidare.mot)

Böckerna. Tillgången. Framgången och förändringarna. Var är du i allt detta?

[philippagoranson]

Philippa Göranson