Izzivi sodobne slovenske pediatrične paliativne oskrbe

Paliativna oskrba otrok je specializirana paliativna oskrba z določenimi posebnostmi v primerjavi s paliativno oskrbo odraslih. Enačenje načel sodobne paliativne oskrbe otroka s protokoli opustitve in odtegnitve zdravljenja je odraz nepoučenosti in je povsem napačno. Multidisciplinarni tim za paliativno oskrbo otrok na terciarni ravni sestavljajo otrokovi lečeči subspecialisti, medicinske sestre, psiholog in po potrebi drugi zdravstveni sodelavci, med njimi tudi tisti z dodatnim znanjem iz paliativne medicine in zdravstvene nege. Tim oblikuje načrt nadaljnjega zdravljenja ter postopke oskrbe nenehno prilagaja rasti in razvoju otroka, napredovanju bolezni, slabšanju bolnikovega stanja in pojavljanju novih težav. Vsebina načrta paliativne oskrbe je odvisna od trenutka vključitve bolnika in njegove družine, vrste bolezni ter prepoznanih in izraženih potreb. V pediatriji se potreba po uvedbi paliativnega pristopa pri zdravstvenih delavcih pogosto prepozna prepozno ali pa se sploh ne. S širjenjem znanja in zavedanja koristi sodobne pediatrične paliativne oskrbe za bolnike in njihove svojce poskušamo doseči, da postane paliativni pristop pri bolnih otrocih z neozdravljivo napredujočo boleznijo del vsakodnevne klinične prakse. Ne gre le za eno neodtujljivih pravic najtežje bolnih otrok, gre tudi za delo zdravstvenih delavcev v skladu z etičnim kodeksom, da zdravljenje, ki je bolniku bolj v breme kot v korist, etično ni utemeljeno

Basic expressions and recommended terminology in palliative care

Paliativna oskrba je v slovenskem prostoru mlada stroka. Z njenim razvojem so se začeli uporabljati številni izrazi, ki so včasih nejasno in nenatančno opredeljeni. Posledica tega je, tako med strokovnjaki kot na splošno v družbi, njeno neustrezno razumevanje. občasno zato prihaja do nesporazumov in posledično tudi do strokovnih napak. Namen izvajanja paliativne oskrbe je zagotoviti čim boljšo kakovost življenja bolnikom z napredujočimi neozdravljivimi boleznimi ter nuditi podporo njihovim bližnjim, v času bolnikove bolezni in po smrti. V paliativni oskrbi zdravstveno osebje veliko bolj kot sicer posveča pozornost celostni obravnavi posameznega človeka, kot osebo z individualnimi telesnimi, psihološkimi, socialnimi in duhovnimi potrebami. To je dinamičen proces, saj se moramo ves čas prilagajati trenutnim potrebam bolnika in njegovih bližnjih ter z aktivnim načrtovanjem učinkovito preprečevati nove in nepotrebne zaplete. Zgodnja paliativna oskrba se v začetku obravnave bolnika z neozdravljivo boleznijo prepleta s specifičnim zdravljenjem. Kasneje, z napredovanjem bolezni, obravnava prehaja v obdobje pozne paliativne oskrbe in obdobje oskrbe umirajočega. Po sodobnih smernicah se paliativna oskrba izvaja celostno, neprekinjeno in integrirano v ostale zdravstvene stroke. Cilj paliativne oskrbe je sledenje vrednotam posameznika in ohranjanje dostojanstva življenja. V prispevku smo zbrali najpogosteje uporabljene izraze s področja paliativne oskrbe. Na podlagi mednarodnih priporočil, lokalnih značilnosti in nacionalnih izkušenj smo jih skušali čim bolj jasno opredeliti za naš prostor. Natančno opredeljeni pojmi paliativne oskrbe in njihova dosledna uporaba bodo vodili k boljšemu medsebojnemu razumevanju strokovnjakov in uporabnikov paliativne oskrbe ter k njenemu kakovostnejšemu izvajanju.Palliative care is a young medical discipline in slovenia. since its beginnings many terms evolved, many of them vaguely and imprecisely defined. For that reason, we observe inadequate understanding, among both professionals and in society at large. Occasionally there are even misunderstandings and consequently professional mistakes. The goal of palliative care is to ensure the best quality of life for patients with progressive incurable diseases, but it also provides support to the relatives all along the patient’s illness and after death - during the bereavement period. in palliative care, a person is cared for as a whole, as a person with individual physical, psychological, social and spiritual needs. This is a dynamic process, as it must constantly adapt to the current needs of the patient and his relatives and effectively prevent new and unnecessary complications through active planning. Early palliative care interplays with the specific treatment at the onset of treatment of a progressive incurable disease. There follows a period of late palliative care and a period of care in the last days of life. according to the modern guidelines, palliative care must be performed holistically, continuously and integrated into other basic professions. The goal of palliative care is to follow the values o f the individual and preserve the dignity of life. in the paper, we have collected and defined most basic terms according to the international recommendations, national experiences, local characteristics and practices. Precisely defined concepts of palliative care and their consistent use will lead to a better mutual understanding of professionals and users of palliative care and to its better implementation

Corrigendum to “A multicenter retrospective study of calcineurin inhibitors in nephrotic syndrome secondary to podocyte gene variants.”

DOI of original article: https://doi.org/10.1016/j.kint.2023.02.022 The authors regret to report that Hee Gyung Kang, Department of Pediatrics, Seoul National University Children's Hospital, Seoul National University College of Medicine, Seoul, Republic of Korea, inadvertently was not included in the list of authors of the published article. The collaborator was removed from the Acknowledgments. This has been corrected in the article online. The authors would like to apologize for any inconvenience caused.</p