PALLIATIVE CARE AS A HUMAN RIGHT

Svetovna zdravstvena organizacija je leta 2002 paliativno oskrbo opredelila »kot oskrbo pacientov z neozdravljivo boleznijo in njihovih bližnjih, katere namen je izboljšati kakovost življenja pacientov in njihovih bližnjih s preventivnimi ukrepi in lajšanjem trpljenja tako, da se omogoči zgodnje odkrivanje, ocena in ustrezno obravnava bolečine ter drugih telesnih, psiholoških, socialnih in duhovnih težav«. Največji prispevek k razvoju paliativne nege in oskrbe sta naredili Elizabeth Kübler-Ross in Cicely Saunders. V Sloveniji se je začela razvijati leta 1995, ko je bilo ustanovljeno društvo Hospic, nevladna, neprofitna humanitarna organizacija. Tako kot na vseh področjih, se tudi izvajalci paliativne nege in oskrbe ravnajo po smernicah, ki jih je v obliki osnovnih načel izdala Svetovna zdravstvena organizacija in so opisana v četrtem poglavju. Na splošno delimo mednarodne organizacije na univerzalne in regionalne oziroma omejene. Tako univerzalne kot regionalne so vladne organizacije in imajo priznano pravno osebnost, ki jim jo priznava notranji pravni red države, v kateri imajo svoj sedež. Pri obeh je bilo pogledano ali nekateri njihovi najpomembnejši dokumenti vključujejo pravico do paliativne nege in oskrbe in ali je kot takšna človekova pravica. Tako je bilo pri univerzalnih mednarodnih organizacijah pogledano, ali najdemo paliativno nego in oskrbo v Splošni deklaraciji o človekovih pravicah, v Mednarodnem paktu o državljanskih in političnih pravicah, v Mednarodnem paktu v ekonomskih, socialnih in kulturnih pravicah, v Konvenciji o otrokovih pravicah, v Konvenciji o pravicah invalidov in v Resoluciji o paliativni oskrbi. Kar se tiče regionalnih mednarodnih organizacij, pa je bila pod drobnogled vzeta Evropska konvencija o varstvu človekovih pravic in temeljnih svoboščin, Evropska socialna listina, Konvencija o človekovih pravicah v zvezi z biomedicino (Oviedska konvencija) in nekaj »soft law« dokumentov (Priporočilo Sveta Evrope iz leta 2003 o paliativni negi in oskrbi, Priporočilo parlamentarne skupščine o varstvu človekovih pravic in dostojanstvu bolnih na smrt in umirajočih, Poznanska deklaracija o paliativni oskrbi v Vzhodni Evropi in Bela knjiga o standardih in normativih za hospice in paliativno oskrbo v Evropi). Po pregledu teh mednarodnih dokumentov je bilo pogledano še, kako je s paliativno nego in oskrbo v Sloveniji. Tako je bil najprej pregledan Zakon o zdravstvenem varstvu in zdravstvenem zavarovanju, nato pa najpomembnejši zakon na tem področju v Sloveniji, Zakon o pacientovih pravicah. Pravne podlage v Sloveniji so bile končane z Resolucijo o nacionalnem planu zdravstvenega varstva, Strategijo varstva starejših in prav tako zelo pomembnim Državnim programom paliativne oskrbe. Zadnji del teoretičnega dela diplomske naloge se je nanašal na pregled pomembnejših združenj in organizacij za paliativno nego in oskrbo, tako po svetu, kot v Evropi in Sloveniji. Na koncu je prišel na vrsto še empirični del, v katerem se je s pomočjo ankete med drugim ugotavljalo, ali ljudje poznajo pojem paliativne nege in oskrbe.The World health organization defined palliative care as an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. The biggest contribution to the development of palliative care has been done by Elizabeth Kübler-Ross and Cicely Saunders. The development in Slovenia has begun in 1995 with the establishment of the association Hospic, a non-governmental and non-profitable humanitarian organization. As in all the other areas, the providers of palliative care act according to the guidelines that have been made in the form of basic principles by the World health organization and are described in the fourth chapter. In general, the international organizations are divided to the universal and regional or limited organizations. Both are governmental organizations and have a recognized legal personality that is recognized by the internal legal order of the country in which their headquarter is in. It was looked in in both of them to see, if some of their most important documents include the right to palliative care and if so, if in fact it is a human right. In the universal international organizations it was checked to see, if palliative care is mentioned in the Universal declarations of human rights, in the International covenant on civil and political rights, in the International covenant of economic, social and cultural rights, in the Convention on the rights of the child, in the Convention on the rights of persons with disabilities and in Resolution on palliative care. As far as regional organizations go, palliative care was looked under the microscope in the European convention for the protection of human rights and fundamental freedoms, the European social charter, the Convention on human rights and biomedicine (Oviedo Convention) and some soft law documents (Recommendation Rec(2003)24 on the organization of palliative care, Recommendation on the protection of the human rights and dignity of the terminally ill and the dying, Poznan declaration on palliative care in Eastern Europe and White paper on standards and norms for hospice and palliative care in Europe). After these international documents were checked, it was checked to see, how palliative care is organized in Slovenia. First the Law on health care and health insurance was reviewed and after it the most important law in this field in Slovenia, Patients’ rights act. Legal grounds in Slovenia were finished with the Resolution on national health care plan, Strategy care for the elderly and with also very important National program of palliative care. The last part of the theoretical part of this diploma was covering an overview on the most important associations and organizations for the palliative care in the world, in Europe and in Slovenia. In the end of this diploma there is an empirical part in which, with the help of a survey, it was established if people in Slovenia know the concept of palliative care