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Access to Palliative Care in the Italian Legal System

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Advance Care Decision Making in Germany and Italy

Abstract

The current model of palliative care in the Italian legal system is regulated by Law no. 38 of 15 March 2010. The objective of palliative care is to alleviate pain, the fear of which becomes central in a patient’s consideration of his pathology. An adequate treatment of pain is provided for in all professional Codes of Ethics according to the logic of protecting the dignity of sedated patients while excluding however any disproportionate treatment that does not preserve the “quality of life”. This chapter examines the fundamentals of Law no. 38/2010 and its operational aspects, focusing especially on its implementation at regional level and on the specific area of pediatric palliative care.

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Notes

  1. 1.

    Ferrando (2006), p. 1167.

  2. 2.

    For a general approach to the topic science law, see Santosuosso and Azzini (2010); Santosuosso (2011).

  3. 3.

    Corli (1988).

  4. 4.

    Zatti (2007), p. 1.

  5. 5.

    WHO defined palliative care as a set of techniques that provide comprehensive assistance and are active to all those people whose disease does not respond to specific treatments.

  6. 6.

    The Three-Step “Ladder” pharmacological approach is recommended by the World Health Organization (WHO). Belonging to the 1st step are NSAIDs (non-steroidal anti-inflammatory drugs), which are accompanied by adjuvant drugs; the 2nd step includes the weak opioids, combined with NSAIDs and adjuvant drugs. In the 3rd step are strong opioids, along with NSAIDs and adjuvant drugs. The first step is expected to be the exclusive use of non-steroidal anti-inflammatory drugs, possibly combined with adjuvant drugs (such as psychotropic drugs, steroids, antidepressants, anticonvulsants and local anaesthetics). If pain is not controlled weak opioids (codeine, oxycodone, buprenorphine) may be administered or, in serious cases, strong opioids, such as morphine. This acts by blocking the transmission of pain, by binding it to specific receptors located in the central nervous system. However, there are possible alternatives to morphine in case of inefficiency or poor tolerability: methadone, fentanyl, and buprenorphine. The WHO ladder for cancer pain is a relatively inexpensive yet effective method for relieving cancer pain in about 90 % of patients.

  7. 7.

    Santosuosso (1996), p. 206; Neri (2011) p. 1785ff.

  8. 8.

    This requires the involvement of several professionals. The duty extends even to accompanying the patient in the “process of dying”, speaking not only on survival but also on the quality of his remaining life in order to improve it. See Patti (2006), pp. 87–102.

  9. 9.

    Faggioni (2005), p. 98.

  10. 10.

    With the regulation referred to in Decree 22 February 2007, 43, entitled “Defining standards of care for terminally ill patients in the palliative treatment”, in the implementation of Article 1, co.169 of Law 311 of December 30, 2004, there are fixed eight standard that the regions must achieve in order to demonstrate that they have secured the delivery of this LEA throughout the Italian territory. Now, the absence of a true national plan for palliative care has generated the increase of the differences from region to region, depending on the level achieved in the delivery of the specific LEA. Despite that the development in the territory of the structures to provide such care is undeniable, the absence of a specific welfare program of palliative care that provides uniform criteria for patient access, minimum requirements for the accreditation of providers, specific standards of care, common evaluation criteria, and rates appropriate to the sustainability of their management in the area is evident.

  11. 11.

    Andreoli (2003), p. 9; Melazzini (2010).

  12. 12.

    Andreoli (2003), p. 70.

  13. 13.

    De Fanti (2007), p. 91; De Mattei (2008).

  14. 14.

    D’Agostino (1993), p. 675ff.

  15. 15.

    In 1990, the WHO had provided the following definition: “Palliative care is the active total care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms and of psychological, social and spiritual problems is paramount”.

  16. 16.

    Franzoni (2009), p. 255ff; Busnelli (2001), p. 20.

  17. 17.

    That, in accordance with Art. 1, para. 2, of Legislative decree of 30 December 1992, no. 502, and subsequent amendments.

  18. 18.

    The reference is to the previous Law no. 12 of 19 February 2001 entitled “Rules to facilitate the use of analgesic opioids in pain”, which substantially modifies Law 309/90, concerning the regulation of narcotic drugs and psychotropic substances that, in the idea to regulate the use of opioids stimulant, did not prescribe any legislation to facilitate the therapeutic use of these drugs.

  19. 19.

    Mercadante (2011), p. 1254.

  20. 20.

    Furthermore, it should be clarified that the law does not allow, in any case, the administration of useful substances such as morphine intravenously.

  21. 21.

    Cancer Pain Relief and Palliative Care in Children, WHO-IASP, 1998.

  22. 22.

    Viciani (1996), p. 272.

  23. 23.

    For this specific segment of the population, the time of employment of palliative care can be significantly different—in some cases, it can be limited to the first year of life (disease congenital); in others, much more prolonged periods (Cystic Fibrosis Pulmonary Heart disease, autoimmune diseases); and still in other cases, concentrated in a short period that precedes death.

  24. 24.

    Parente (2011), p. 112.

  25. 25.

    The regional model of care was drawn with the DGR n. 5273 of 1998, in which is defined the overall structure of the system of home care (the so-called Integrated Home Care), with particular attention to the needs of the terminally ill. In 2000 DGR n. 2989 were therefore defined the guidelines for regional legislation with the specification of structural, technological, and organizational requirements of hospice (inside and outside the hospital) ensuring continuity and quality of service.

  26. 26.

    In 2007, the European Parliament issued a mandate designed to analyse and report on the development of palliative care in the 27 EU member states in order to obtain an overview of the understanding, organisation, provision, and funding of palliative care in ‘EU and in individual Member States. Recommendations were made on the implementation policy in the EU and in the Member States and were identified several areas where action is needed: not all interested persons can gain access to palliative care with the same ease, cancer patients must receiving’ best service, and the financing of the offer of palliative care is not always ensured, there is a shortage of trained personnel in palliative care, there are no generally accepted standards of quality palliative care. The report also states: Raised to the policy level, this translates to a need for efficient use of resources (both human and financial) to guarantee the best possible quality of care. In particular, in November 2010 the Australian Health Ministers’ Conference endorsed the National Palliative Care Strategy. The Strategy is the policy document that the Australian Government and State and Territory governments use to guide palliative care policy development and service delivery across Australia. The Strategy has four goal areas: awareness and understanding, as to significantly improve the appreciation of dying and death as a normal part of the life continuum and to enhance community and professional awareness of the scope of and benefits of timely and appropriate access to palliative care services. The other goals are appropriateness and effectiveness: in fact, appropriate and effective palliative care is available to all Australians based on need. The Australian Health Ministers’ Conference identifies leadership and governance among the areas of intervention, to support the collaborative and effective governance of national palliative care strategies, resources and approaches. The last goal areas are capacity and capability, to build and enhance the capacity of all relevant sectors in health and human services to provide quality palliative care.

  27. 27.

    Zucco (Chief of the Scientific Committee of XV Congress SICP, Director of Palliative Care Unit and Hospice, Azienda Ospedaliera “G. Salvini”, Garbagnate-Milano) 2007, p. 438.

  28. 28.

    Giulino et al. (2011), p. 123.

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Ivone, V. (2013). Access to Palliative Care in the Italian Legal System. In: Negri, S., Taupitz, J., Salkić, A., Zwick, A. (eds) Advance Care Decision Making in Germany and Italy. Veröffentlichungen des Instituts für Deutsches, Europäisches und Internationales Medizinrecht, Gesundheitsrecht und Bioethik der Universitäten Heidelberg und Mannheim, vol 41. Springer, Berlin, Heidelberg. https://doi.org/10.1007/978-3-642-40555-6_7

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