Rivista per le Medical Humanities
Sara Rubinelli
rMH 33, 2016, 11-13
Fortunately you don't use internet
This paper introduces the topic of how to communicate bad news, by considering the gap between the theory of good communication and its practice in a contextualised environment. By reflecting on a real case where a doctor delivers the diagnosis of lung cancer via email, I analysed and evaluated the role of internet as a source of information for patients who shift between incertitude and hope. Internet can be used to find information that supports the decision-making of patients. Yet, if uncontrolled, internet can inform decisions that, on the one hand, follow what patients would prefer to do, but on the other are suboptimal. Internet contains incorrect contents. However, the other main problem is that it presents synchronically different points-of-view that are all valid but are rooted in different schools of thought. It is unre - alistic to think that patients, even those who have a high health literacy, can make appropriate decisions on aspects where even health professionals disagree. The empowerment of patients who face life-threatening health conditions calls for the role of health professionals as expert friends, who can guide patients, without imposing specific courses of action.
Graziano Martignoni
rMH 33, 2016, 14-22
Clinical humanism and the work of hope
Clinical humanism and, within it, the work of hope, basically belong to the anthropological turning-point of medicine, as if they were sharing a family atmosphere. It is with this light that the ethos of care illuminates: light that transforms, as Heidegger writes reading Hölderlin, the Dämmerung, the uncer tain future, the dark twilight, in the Frühe, in the dawning of a new morning. Therefore, clinical humanism also becomes a sentinel and guardian of the work of hope. The challenge of clinical humanism – which is something more and something less than the ethical-relational techniques of Medical Humanities – is this: how can we make our “home”, a space reserved for care, liveable enough to accommodate hope? How can we offer a place within ourselves to hope, the last remaining in Pandora’s box, after all the evils in the world have brimmed over? What can be done so that the roses of Atacama, which have only one day to come to life, are able to continue to exist contemporarily in our hearts for the rest of the year?
Christopher Marti
Nicola Grignoli
rMH 33, 2016, 23-27
A time for prognosis in rehabilitation
Rehabilitation is a field of medicine that aims at reducing the disability of a person after an accident or disease and at facilitating adaptation to a new living situation. In rehabilitation, a functional prognosis, and not a vital prognosis, is discussed, such as recovering one’s autonomy in personal care and daily activities, and participating in society and also professional activities. Functional prognosis differs from life prognosis: it goes from a black and white scheme to a mirror image of the complexity of life, with all its possible nuances. Expanding the outcome of rehabilitation to social dimensions means getting closer to environmental and cultural perspectives, but also to subjective and individual ones, with the aim of developing patient-centred medical care. The prognosis in rehabilitation benefits from an expanded time of observation, which allows to take into consideration the future perspective of the patient on a long-term basis. Having more time, more attention that is given to communication can be increased, and patients can be sustained in developing personal goals with respect to their health conditions, therefore, adapting the rehabilitation project to subjective expectations.
Graziano Ruggieri
rMH 33, 2016, 28-32
Beyond the time of prognosis: hope in rehabilitative medicine
Rehabilitative medicine is a healing process, which solicits all possibilities in adaptation, encouraging the mobilisation of “resources” that are inherent in the sick person. If human nature is, at least in part, also a “functionally” effective artifice that derives from the many cultural elements it has known how to conceive and build during its long biological evolutionary path, the spectral study of all its capacities and potentialities cannot but also be shaped by elements of a biological-anthropological philosophical nature. When the body, with all its dysfunctions, whether large or small, become the “tomb of the soul” of its most spiritual being, man more lucidly understands again, and considers again, all the other dimensions of his being, recognizing himself as a body, even though his own body is also more from him. What dimension, then, remains if not that of rearranging the scenario of his life through other strengths? Is it all those dimensions that do not “destroy” before a precipitous annihilation, which will be reserved for him from the end of time? Rehabilitation medicine is certainly also known to play a humanising role with respect to the fantasising promises narrated by techno-medicine. The rehabilitative part of medicine must, therefore, decidedly rediscover the role of hope in its most positive value. It should strongly consider it as an “enabling” factor, supporting it as a useful “function”, actually, as an appreciable element of strength and support of the entire care process.
Pierluigi Quadri
rMH 33, 2016, 33-37
Alzheimer. And then?
Starting with having to communicate the diagnosis and the prognosis, caring for patients with dementia involves many complex decisions for the attending health care team, which are related to the chronic nature of the disease and to its unfortunate evolution. An obstacle that exists prior to communication, the diagnosis is certainly represented by the fact that, in many cases, it is mostly family members to request a visit, while the patients have, from the outset of the disease, a more or less marked deficit of awareness of their cognitive difficulties. The ability to diagnose the disease in its pre-clinical phases raises further ethical problems that are not easy to solve. An adequate approach towards the patient and the patient’s family members requires an accompaniment throughout the course of the disease, with an “ethically oriented” attitude. This must see the patient as the centre of attention, but also those who are near the patient: the role of the family in taking into its care the person affected by dementia has been stressed by many studies of a sociological and clinical nature. In this context, already in the initial stages of the disease, uncertain or even conflicting situations are not rare between commitment to the patient and that of the family, whose suffering should still be accepted and taken into account. Concrete goals, though partial, can significantly improve the quality of life and the relationships within the entire family unit, therefore, regularly reviving a space for hope throughout the course of the disease.
Luca Ottolini
rMH 33, 2016, 38-42
What hope is there as part of palliative care?
In common understanding, even within the healthcare sector, the term “palliative” is often closely correlated with the condition of terminal illness, therefore, mostly encumbered by negative meanings, difficult to reconcile with what is commonly called “hope”. This also depends on whether the notion of hope in most healthcare services derives mainly from a “realistic” vision, which places it closely in line with the truth and, therefore, difficult to reconcile with the full awareness of a disease that has an unfortunate quoad vitam prognosis. In fact, extensive literature reveals that most patients in the terminal stages of a disease consider hope from also at least two other perspectives. On one hand, the “functional” perspective, intended as a mechanism for adaptation-coping to the new situation and, on the other hand, the “narrative” perspective, where the focus is centred on the person’s intrinsic values, on the person’s history, on the person’s spirituality. Certainly, the object of hope, in the advanced stages of a disease, moves from general concepts (live-heal), to other more specific ones (live as normally as possible, maintain a role, reach a goal, be able to give meaning to something), which coincide with the objectives of “taking responsibility” when administering palliative cures. Literature on this subject also highlights how hope, at this stage, is a dynamic and fluctuating process, where a spiritual dimension acquires increasing importance over a physical and realistic one. In this context, an open, honest, and empathic communication is essential so that hope may evolve properly and, contrary to what one might fear, one that is always appreciated. Certainly, along with the patient, one must transition from curing (the illness, the organ), to taking care (of the person and family), where also healthcare givers must adapt to a change of perspective.
Piermario Maffei
rMH 33, 2016, 43-47
Demoralisation and depression in relation to the concept of limit
Life is naturally limited. The awareness of this limit may bring on different psychological manifestations. Demoralisation and hope, apparently contradictory, may be in equilibrium, as in homeostasis defined as “health”, perturbed by the disease. The concrete limit set by the prognosis leads to an immediate appeal towards the frailty of life. In everyday life, this awareness has a level of uncertainty (more or less illusory), which leaves room for hope. Faced with the limit presented by the prognosis, the reaction is rather different. One can go from denial, an effective protection from the intolerable, yet, dysfunctional when it comes to managing the disease, where it would be more beneficial to accept the limit, in order to reduce its power. There can also be – closer to reality – a reaction of anger, potentially destructive if not correctly handled and processed to be used again in a more adaptive way. Once can then move on to a sense of loss with demoralisation, which should be distinguished from depression where, unlike the first, a vital force is lost. Depression would be, in this sense, a lower form of balance, however, feasible and sustainable by the body in that context. This would then constitute a way of accepting limits from which to start over again, in a different balance.
Laura Boella
rMH 33, 2016, 48-54
Images of hope in twentieth-century philosophy
What does it mean to hope? Must we learn to hope in times that seem to refute all the faith we have for the future? These questions continue to resonate in everyone’s life, despite the difficulty of understanding the nature of a virtue that seems anachronistic, naive, and the accomplice of dime-a-dozen dreams. Hope has been a central figure, yet, one that is highly dramatic in the twentieth century, and it is difficult to separate it from collective historical events, such as the Soviet revolution and also the youth rebellions of the ’60s. The philosophy of Ernst Bloch’s hope is now practically forgotten. The theology of hope appears as a relic of a confused period. Hope is no longer of interest, nor is it frightening. It appears dangerous as a collective force, which affects history and politics, responsible for many catastrophes, for unjustified leaps forward, often paid at a high price, for an anxiety of wanting to improve, which has often capsized into the contrary, exercising violence and authoritarianism on the single person. On an individual level, the ideal, or the utopia of a world that is better, different, or even of a personal happiness, now seems a gamble or a deranged flight of one’s imagination. Today, we fear the future, full of uncertainties and devoid of renewal, and we pause – actually, we are sucked into – the present, with its needs for “realism”, of a calculation of objective possibilities.
Yannis Constantinidès
rMH 33, 2016, 55-64
What good is hope?
Hope undoubtedly allows for survival, for not resigning to an apparent fatality. Yet, does it not also perhaps prevent individuals from guiding each other? If we are content to wait passively for changes without inciting them, we completely put ourselves in the hands of God or of chance, and we no longer then count on our own resources. There is no great merit in hoping if it is only a superstitious attitude of supplication. Should we, therefore, do without any hope? Desperation, another word for depression, in fact, shows that the absence of hope is difficult to bear for a human being. Only a few great sages can boast of having killed in themselves hope, while still maintaining a joie de vivre, since it is, indeed, disappointed hope that more often leads to nihilism, to the sarcastic laugh of the disillusioned. After all, it is the same energy that animates hope as well as desperation, with the difference that the latter uses it for destruction instead of creation. Therefore, hope is neither good nor bad in itself, but when it goes hand-in-hand with a narrowminded blind faith, it becomes a simple lifeline for the survivors of existence. This religious hope(espérance) weakens real hope (espoir), which is the engine of action and transformation. It is this hope (espoir), which is always a bit insane, that forces us not to accept the fait accompli and to try to achieve “the impossible”. What is part of man, in this sense, is to hope against all odds, in spite of everything.
Michele Saporiti
rMH 33, 2016, 85-92
Health as a fragile and fundamental right
This paper aims at analyzing the right to health as a fundamental human right. Firstly, it will give a theoretical clarification of its logic, structure, and peculiarities from a legal viewpoint. Secondly, the paper will pay close attention to the main historical stages of its development as a positive right, from the liberal State to contemporary constitutional democracies. International documents and legal sources will also be considered in this perspective. Thirdly, it will criticize the bare formal protection of health, starting from General Comment number 14 of the Committee on Economic, Social, and Cultural Rights of 2000. Two main points will be scrutinized: the presumed lack of economic resources as a limit for health protection, and the monopolies of States regarding the sale of harmful substances or activities that create dependence. Eventually, the paper will suggest to consider the right to health as a fundamentally fragile right. As a matter of fact, it will be argued that it deserves special protection, especially from potential economic exploitation.
rMH 33, 2016, 93-99
Individual rights and collective interest
The author moves from the indication of the constitutional foundation of the right to health and the references that are found in the international charters, which are pertinent both on a European level, as well as worldwide. Subsequently, on the basis of international documentation and jurisprudence, this indicates the broad notion of the right to health that all States are required to guarantee, and the limits that are allowed. In particular, the relationship of the right to health with regard to the amount of economic resources available, is a problem. In this respect, worth mentioning is the important decision made by the Federal Court, on November 23rd 2010, in the Myozyme case. Demonstrating the interplay of aspects that affect the health of individuals and others that concern the community, the author underscores the indissoluble connection between individual rights and collective interest.
Marco Borghi
rMH 33, 2016, 100-104
Legal aspects of the privation of freedom within the healthcare sector
Legislation within the healthcare sector, albeit partial, if not even oftentimes antinomian in terms of content, and complex in the phase of subsumption in specific cases, essentially pursues the objective of guaranteeing respect towards the patient, especially when the latter is confronted with the possibility of being subjected to coercive measures. This teleological interpretation, since it complies with fundamental ethical principles and constitutional rights, in particular, with personal freedom and the right to self-determination, imposes every healthcare professional to not only settle for a comfortable and formalistic application of the law but, rather, to proceed in any medical-legal predicament that is prejudicially in search of the ultimate sense of an applicable norm, through an interpretation, which is constitutionally and ethically oriented and, consequently, assume a behaviour towards the patient that is rigorously consistent with this interpretation.
Mattia Lepori
rMH 33, 2016, 105-107
The right to express one's own will and advance directives
The introduction of new regulations within the field of protecting adults, in January 2013, gave a solid and valid legal foundation throughout all of Switzerland, with regard to regulating the issue of advance directives (and/or living wills) for patients. Besides a purely legal aspect, these regulations consolidate and, in a certain way, formalise the cultural changes that have intervened in recent years with regard to the doctor-patient relationship. Advance directives are presented as a tool for defending the principle of autonomy and self-determination of the patient, but also for safeguarding the diversity of opinion and creed. It is, and will be, important in the future to raise the awareness of healthcare personnel, patients, and citizens regarding the existence and use of this tool, at the same time spreading the message of its utility, which does not mean obligation and constraint. Therefore, clinical ethic committees, like comec, are committed, and will be in the future, towards an effort to divulge these messages, and this is also the objective of the article.
