On behalf of the Dahlborg Healthcare Leadership Group (DHLG), I am once again so very honored to share another impactful post written by my Global Listening Center (GLC) Healthcare Board colleague in Sweden, Philippa Göranson.
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 every one 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.” 
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.” 
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.” 
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.” 
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.” 
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”. 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 health care 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.” 
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
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)
Cordovado, Grace, “Enlightening Results”, Twitter: @GraceCordovado
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)
 Király, István, 2011, pg. 131
 Király, István, 2011, pg. 136
 Király, István, 2011, pg. 144
 Király, István, 2011, pg. 180
 Király, István, 2011, pg. 166
OBS: De röda orden med de länkar som ska bäddas in kommer utanför denna text men väl i mailet.