[Part I. End-stage chronic organ failures: a position paper on shared care planning. The Integrated Care Pathway]. / Parte I. Il percorso clinico e assistenziale nelle insufficienze croniche d'organo "end-stage".Documento di consenso per una pianificazione condivisa delle scelte di cura.

In Italy the birth rate decrease together with the continuous improvement of living conditions on one hand, and the health care progress on the other hand, led in recent years to an increasing number of patients with chronic mono- or multi-organ failures and in an extension of their life expectancy. However, the natural history of chronic failures has not changed and the inescapable disease's worsening at the end makes more rare remissions, increasing hospital admissions rate and length of stay. Thus, when the "end-stage" get close clinicians have to engage the patient and his relatives in an advance care planning aimed to share a decision making process regarding all future treatments and related ethical choices such as patient's best interests, rights, values, and priorities. A right approach to the chronic organ failures end-stage patients consists therefore of a careful balance between the new powers of intervention provided by the biotechnology and pharmacology (intensive care), both with the quality of remaining life supplied by physicians to these patients (proportionality and beneficence) and the effective resources rationing and allocation (distributive justice). However, uncertainty still marks the criteria used by doctors to assess prognosis of these patients in order to make decisions concerning intensive or palliative care. The integrated care pathway suggested in this position paper shared by nine Italian medical societies, has to be intended as a guide focused to identify end-stage patients and choosing for them the best care option between intensive treatments and palliative care.

[Part II. Scientific evidence in end-stage chronic organ failure. A position paper on shared care planning]. / Parte II. Evidenze scientifiche nelle insufficienze croniche d'organo "end-stage". Documento di consenso per una pianificazione condivisa delle scelte di cura.

The therapeutic options related to chronic organ failure are interconnected to the variability of human biological responses and the personal history and choices of the chronically ill patient on one hand, and with the variable human answers to therapies on the other hand. All these aspects may explain the small number and low quality of studies aimed to define the clinical criteria useful in identifying end-stage chronically ill patients, as highlighted through the 2012-2013 Medline survey performed by the task force. These results prevented the grading of scientific evidence. However, taking into account the evidence based medicine definition, the task force believes the clinical reasoning and the individual experience of clinicians as well as the patients and families preferences cannot be replaced "tout court" with a strict methodological research. Accordingly, the working method selected by the task force members was to draw up a set of clinical parameters based on the available scientific literature, submitting it to a peer review process carried out by an expert panel. This paper discusses a set of clinical parameters included in the clinical decision-making algorithm and shared by nine medical societies. For each chronic organ failure these clinical parameters should be intended not as a rigid cutoff system to make a choice between two selected care options (intensive vs palliative), rather as the starting point for a joint and careful consideration regarding the opportunity to adopt the clinical decision-making algorithm care proposed in Part I.