Palliative care, which can be applied in various contexts (hospitals or at home, or in clinics of various kinds), finds in the hospice the principle setting in which it is applied to the highest degree. A hospice, indeed, is a setting used for initiatives of various kinds that are intended to relieve the pain of a patient during that stage when the illness does not respond to specific treatment and a hospital cannot take responsibility for the patient even though constant assistance is required within the context of an institution. With a scientific approach and through various professional figures, a hospice offers medical/care services accompanied by services involving psychological support, spiritual accompanying, containment of reductions in the patient’s functional capacities, and overall wellbeing.
To assure overall care for the patient and foster his relationships with the people who are important for him, the living area is designed to reconstruct a domestic environment, privileging large and luminous spaces where the patient and his loved ones can feel at home: these spaces are conceived to be able to be adapted according to the tastes and needs of the patient, who, indeed, often has an opportunity to furnish this area with his own objects. The organisation of the care services also takes into account the choices of the patient, adapting them to his varying needs, to his moods and feelings, and to an ongoing readiness to help without the rigid timetables and schemata that are specific to hospital institutions. It is not inappropriate to believe that a health-care worker must enter on tiptoes into the intimacy of the room of the patient because that is his home and it is the patient who manages the sequence of initiatives. Perhaps it is out of respect for this – which is specific to the hospice – that the Italian language has avoided translating this term which, amongst its various meanings, refers to hostelries managed by religious that were intended during the medieval period to host pilgrims on routes leading to holy cities: after a long day’s travelling they became a refuge where the warmth of a hearth, the relief of a hot bed, the sustenance of a good supper, and an ear ready to listen, could all be found!
Adopting the philosophy of palliative care, with a holistic approach to the patient and attention paid to his family and relational unit, a hospice organises its services around a multidisciplinary team that tries to assure the best quality of life for the patient and the people that are important to him. The various figures of the team work in a team spirit with the good of the patient as their purpose and this last is identified through an investigation of
his needs and the planning of initiatives to which everyone contributes with their own item of expertise. Frequent dialogue between the workers, the principal moment of which is the team meeting, allows the tiller to be directed towards the centrality of the patient and constitutes a moment of democratic decision-making – with the exception of the responsibilities of respective roles which cannot be foregone – of which the entire work group is the protagonist. Often it is specifically the workers called to give basic care who supply the most profound information about the state of wellbeing of the patient, given that they have a greater opportunity for greater contacts with those who deal with his hygiene, care of his body, company and accompanying. Amongst the figures who make up the team, we should not forget the role played by volunteers who contribute to the quality of care through their constant presence and nearness, attention to non-health-care dimensions, and creativity in proposing initiatives involving listening and animation.
Whereas the institution of the hospice underwent rapid development in North Europe from the 1960s onwards, in Italy it emerged later, the victim of prejudices and misunderstandings that still resist and have an echo in the conversations that precede an admission. Some laws and regulations which came into existence at the end of the second millennium and the beginning of the third sanctioned the existence of the hospice. Of especial relevance is Law 38/2010 which laid down that a hospice is an institution dedicated to ‘health-care, socio-health-care, and care activity in palliative care provided without interruption by multidisciplinary teams’ and belongs to a context of national networks for palliative care and the relief of pain in order to ‘assure continuity of care for the patient from the hospital institution to his home’. Since the year 1987, the date of the birth of the first hospice in Italy, the hospice movement has undergone a rapid development and at the present time there are two hundred active hospices in Italy, although a homogenous and capillary pattern is not present, with differences between the North and the South of the country.
Often seen as the last, feared and – as far as this is possible – avoided setting, the recommendations for admission to a hospice demonstrate that ‘terminal care’ is not its only objective. Indeed, a hospice takes responsibility for home care when this is something that the family is not able to do; when the objective symptoms are difficult to manage and require the constant presence of professionals; when the family needs a break in order to be able to focus its attention on the sick person, leaving other to engage in care activity; and when it is necessary to optimise the treatment of pain with a frequent monitoring of collateral symptoms. In the multiplicity of cases, admissions for a short period are thus quite frequent, while awaiting discharge home, once the acute situation has stabilised and the family has regained strength to shoulder the burden. In these cases, the patient is directed to a hospice, even for a temporary admission and/or the relieving of the family relatives. However, even when the aim of an admission to a hospice is evidently to accompany the patient to his death, this choice encourages the family to take the responsibility for living the last days of the patient’s life in his company, delegating to professionals the health-care and care requirements and creating for itself room for a final and meaningful relationship.
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