Care pathways models and clinical outcomes in Disorders of consciousness.

OBJECTIVE: Patients with Disorders of consciousness, are persons with extremely low functioning levels and represent a challenge for health care systems due to their high needs of facilitating environmental factors. Despite a common Italian health care pathway for these patients, no studies have analyzed information on how each region have implemented it in its welfare system correlating data with patients' clinical outcomes. MATERIALS AND METHODS: A multicenter observational pilot study was realized. Clinicians collected data on the care pathways of patients with Disorder of consciousness by asking 90 patients' caregivers to complete an ad hoc questionnaire through a structured phone interview. Questionnaire consisted of three sections: sociodemographic data, description of the care pathway done by the patient, and caregiver evaluation of health services and information received. RESULTS: Seventy-three patients were analyzed. Length of hospital stay was different across the health care models and it was associated with improvement in clinical diagnosis. In long-term care units, the diagnosis at admission and the number of caregivers available for each patient (median value = 3) showed an indirect relationship with worsening probability in clinical outcome. Caregivers reported that communication with professionals (42%) and the answer to the need of information were the most critical points in the acute phase, whereas presence of Non-Governmental Organizations (25%) and availability of psychologists for caregivers (21%) were often missing during long-term care. The 65% of caregivers reported they did not know the UN Convention on the Rights of Persons with Disabilities. CONCLUSION: This study highlights relevant differences in analyzed models, despite a recommended national pathway of care. Future public health considerations and actions are needed to guarantee equity and standardization of the care process in all European countries.

Moral philosophy in bioethics. Etsi ethos non daretur?

In this paper I intend to put forward some criticism of the purely procedural model of bioethics, which, in fact, leads to delegating to biopolitics and biolaw the finding of a purely pragmatic solution to the issues for which bioethics was "invented" over forty years ago. This delegating takes place after the transition from the thesis, dear to modernity, whereby in ethics reasoning should avoid any discussion regarding its foundation or ultimate justification (Etsi Deus non daretur) to the contemporary affirmation of a substantial ethical agnosticism, which, in the name of the incommensurability of morals, should construct procedures as if no sole substantial moral were possible (Etsi ethos non daretur) and act as a guarantor of ethical pluralism. These theses will be discussed and an attempt will be made to demonstrate why it is necessary to establish a link between true and good, and how this is possible only by referring to ontology. The conclusion points to the need to propose bioethics explicitly in terms of content that satisfies the presumed axiological neutrality of procedural bioethics, which however, turns out to be theoretically weak and practically unable to protect the ethical pluralism for which it would like to be the guarantor. The conclusion is that only by referring to ontology can bioethics, which is a fully fledged form of moral philosophy, act as a guarantor of pluralism within the truth and oppose the authoritarian tendencies concealed under the liberal guise of ethical agnosticism.

Moral philosophy in bioethics. Etsi ethos non daretur?

EIn this paper I intend to put forward some criticism of the purely procedural model of bioethics, which, in fact, leads to delegating to biopolitics and biolaw the finding of a purely pragmatic solution to the issues for which bioethics was “invented” over forty years ago. This delegating takes place after the transition from the thesis, dear to modernity, whereby in ethics reasoning should avoid any discussion regarding its foundation or ultimate justification (Etsi Deus non daretur) to the contemporary affirmation of a substantial ethical agnosticism, which, in the name of the incommensurability of morals, should construct procedures as if no sole substantial moral were possible (Etsi ethos non daretur) and act as a guarantor of ethical pluralism. These theses will be discussed and an attempt will be made to demonstrate why it is necessary to establish a link between true and good, and how this is possible only by referring to ontology. The conclusion points to the need to propose bioethics explicitly in terms of content that satisfies the presumed axiological neutrality of procedural bioethics, which however, turns out to be theoretically weak and practically unable to protect the ethical pluralism for which it would like to be the guarantor. The conclusion is that only by referring to ontology can bioethics, which is a fully fledged form of moral philosophy, act as a guarantor of pluralism within the truth and oppose the authoritarian tendencies concealed under the liberal guise of ethical agnosticism (AU)

En este artículo quisiera poner de manifiesto algunas críticas al modelo puramente procedimental de la bioética que, de hecho, la lleva a encomendar a la biopolítica y al bioderecho una solución meramente pragmática de las problemáticas por las cuales ésta fue “instituida”, hace más de cuarenta años. Este cometido acontece después de que se ha producido el paso de la tesis, apreciada por la modernidad, por la que, en ética se deba razonar prescindiendo de cualquier discurso acerca de sus fundamentos o justificación última (Etsi Deus non daretur) a la afirmación contemporánea de un sustancial agnosticismo ético que, en nombre de la inconmensurabilidad de las morales, debería construir procedimientos como si fuera imposible una moral sustancial única (Etsi ethos non daretur) y hacerse garante del pluralismo ético. Estas son las tesis que se discutirán y se intentará demostrar por qué es necesario establecer una relación entre verdad y bien, y cómo esto es posible haciendo referencia solamente a la ontología. La conclusión remite a la necesidad de proponer una bioética explícitamente contenutística que dé respuestas a la presunta neutralidad axiológica de la bioética procedimental, que entre otras cosas resulta ser teoréticamente débil y prácticamente incapaz de proteger ese pluralismo ético del que debería ser garante. La conclusión es que, haciendo sólo referencia a la ontología, labioética, que es con justa razón una forma de filosofía moral, puede garantizar un pluralismo al interior de la verdad, oponiéndose a las derivas autoritarias que se ocultan bajo la máscara liberal del agnosticismo ético (AU)

Disability, human rights, and the International Classification of Functioning, Disability, and Health: systematic review.

This literature review focuses on the literature on disability from the ethical and human rights perspective in the light of the International Classification of Functioning, Disability, and Health in the period from January 1, 2008, to June 30, 2010. This article identifies and examines studies that deal with the subject of disability with reference to rights, ethical issues, and justice. A total of 42 articles and 33 books were selected. The subject most frequently dealt with in studies on disability is that of human rights (76% of the articles and 79% of the books examined), followed by topics relating to welfare (52% of articles and 64% of books), International Classification of Functioning, Disability, and Health (38% of articles and 45% of books), justice (24% of articles and 48% of books), education (21% of articles and 61% of books), and work (19% of articles and 39% of books). The subject of disability is dealt with in various fields of study and various disciplines. Most of the studies are based on the legal approach. It is to be hoped that there will be an increase in the philosophical and ethical study of disability, which has only recently entered the European debate.

Multidisciplinary research network on health and disability training on the International Classification of Functioning, Disability and Health, Ethics, and Human Rights.

This article provides a brief description of a training course in International Classification of Functioning (ICF), Disability and Health, Ethics and Human Rights done in the field of the European MURINET project. This course, in its three annual editions, was the product of a joint collaborative work among the Neurological Institute Carlo Besta, the Catholic University, and the National Council of Disability. The training program was formulated to provide knowledge and skills in the field of disability and in the use of ICF. The main result is that a new generation of European researchers was trained. Thanks to this specialized training program, they are now able to conduct and manage research on health and disability, applying the new concept of health and disability based on the ICF biopsychosocial model.

Role of disability-case manager for chronic diseases: using the ICF as a practical background.

PURPOSE: To report on the case manager's activity in a hospital setting as a supporting professional for families that need to deal with different services and professionals to get answers on their health and psychosocial needs. METHOD: A qualitative analysis and interpretation based on the case manager observations and ICF checklist evaluation with medical and rehabilitation professionals were employed. RESULTS: The case study presented aimed to show one of the most typical interventions of the case manager: the creation of a network around a person with complex and multifaceted needs, where this network does not exist. Case manager bridged the gap between health and social services, specifically organising home-based rehabilitation and helping to find appropriate assistive devices. CONCLUSIONS: This case study showed that the case manager's role is fundamental to support patients and their families in relating to the different services and professionals they need, and illustrated one of the most typical interventions of the case manager: the creation of a network around a person with complex and multifaceted needs, where this network does not exist.

End-of-life decisions in intensive care units: attitudes of physicians in an Italian urban setting.

OBJECTIVE: To assess the attitudes of physicians in Milan, Italy, intensive care units (ICUs) regarding end-of-life decisions. DESIGN: Anonymous self-administered questionnaire. SETTING: All 20 ICUs in Milan. PARTICIPANTS: Physicians employed in the ICUs. MEASUREMENTS AND RESULTS: The response rate was 87% (225 of 259). Eighty-two percent of respondents estimated that <10% of deaths in their ICU followed foregoing treatment, whereas 6% estimated that more of 25% deaths followed foregoing treatment. Male gender, long professional experience, and activity mainly in the ICU were significantly associated with greater willingness to forego life-sustaining treatments. Eighty-nine percent of respondents said ethical consultation on end-of-life decisions was never sought; 58% said they would not respect the expressed desire of the patient to forego treatment; and 48% never noted the decision to forgo treatment on the clinical record. After a decision to withdraw treatment, 31% of physicians said they maintained ongoing treatment, but withheld CPR for cardiac arrest; 47% considered withholding and withdrawing life support were not ethically equivalent. CONCLUSIONS: Most physicians considered that most ICU deaths were not the result of deliberately foregoing life support. Although the overall trend was to intervene minimally in patients' dying, individual factors significantly influenced end-of-life decisions. Few physicians sought external ethical advice and decisions were entirely taken by the medical team. Direct involvement of family and treating physician was limited, and the expressed wishes of the patient were generally ignored.