ࡱ> PRO <bjbjVV 4H<<_ BB8\C_____ZZZ$j "H]ZZZZZ  __bZd__ZS_KJx0',T"T"ST"SxZZZZZZZ(dZZZZZZZT"ZZZZZZZZZB K:  THE ICPCN CHARTER OF RIGHTS FOR LIFE LIMITED AND LIFE THREATENED CHILDREN u}Tk0P0L0B000B00D0o0u}T0K0U00f0D00P[i00_0a0n0)j)Raz V\PQ}T00000000ICPCN Every child should expect indivualised, culturally and age appropriate palliative care as defined by the World Health Organization (WHO). The specific needs of adolescents and young people shall be addressed and planned for. hQf0n0P[i00o00NLuOeP_jiWHO g0[000f0D00h0J000 P%R'`0͑W0_00eSv0t^bvk0iRj0}T000SQ00S0h0L0g0M000`%fg0Rt^gk0yr gj0000k0d0D0f00iRk0[_W00;uY00S0h0L0Bl00000 Palliative care for the child and family shall begin at the time of diagnosis and continue alongside any curative treatments throughout the child s illness, during death and in bereavement. The aim of palliative care shall be to relieve suffering and promote quality of life. P[i00h0]0n0[en0_00n0}T00o00:eh0 TBfk0Y~000B00009hlvlBvh00&NLW0j0L000hQf0n0ugk00_000{k0L}0]0W0f0{k%R_~0g0}}W0f0cOU0000n0g0B000}T00n0vvo00u0T0R00S0h0h0u}Tn0QOL 0T NU0[00S0h0k0B000 The child s parents or legal guardians shall be acknowledged as the primary care givers and recognised as full partners in all care and decisions involving their child. P[i00n0!NB00D0o0lv_No00000cOY00-N_vX[(Wh0W0f0qb000h0h00k00P[i00k0Y0000n0hQf0h0eݑn0zl[k0J0D0f0 NS kn000000g0B00h00j0U0000 Every child shall be encouraged to participate in decisions affecting his or her care, according to age and understanding. hQf0n0P[i00o00Rꁫn000k0Y00eݑzl[k0J0D0f00t^bh0t㉦^k0Tc0_0SR0OU0000 A sensitive but honest approach will be the basis of all communication with the child and the child s family. They shall be treated with dignity and given privacy irrespective of physical or intellectual capacity. lca0k0MnaW0d0d0ckvj0[_0Y00S0h0L00P[i000]0n0[eh0n0B0000000000000a`uh0`1Xn0qQ g k0J0Q00W,gvYRg0B000|_0o00SOvR0wvRn0D0K00k000Z00Nh0W0f0 \p000000000L0 \͑U0000 Every child or young person shall have access to education and wherever possible be provided with opportunities to play, access leisure opportunities, interact with siblings and friends and participate in normal childhood activities. hQf0n0P[i00h0Rt^o00Ye0SQ00_jO0 gY00h0h00k00Sj0P00Js00YOf0}iW00_jO0DQ_0STh0NAmY00_jO0]0W0f0N,n0P[i00_0a0n0;mRk0SRY00_jO0_0S0h0L0g0M000 The child and the family shall be given the opportunity to consult with a paediatric specialist with particular knowledge of the child s condition where possible, and shall remain under the care of a paediatrician or doctor with paediatric knowledge and experience. P[i00h0]0n0[eo00Sj0P0]0n0P[n0urk0|W0_0\[k0vNJY00_jOL0NH0000h0h00k008^k0\PQy;SK0\PQyn0wXh0L}0 gY00;S+^k000;Sf[v{tn0 Nk0B00\  " V Z p   ųŀuj_TjTI>6hSYOCJaJh_hA>CJaJh_hNxCJaJh_h\CJaJh_hu5CJaJh_hkUCJaJh_h_CJaJhvhNxCJaJnHtH"he$hy75CJaJnHo(tH"he$hg85CJaJnHo(tH"he$hv5CJaJnHo(tHhe$hNx5CJaJnHtHhe$hG5CJaJnHtHhe$hG5CJaJh_>*CJaJnHo(tH\   " $ a$gd.~$a$gde=$a$gdk|$ `a$gdR $ a$gdT$ & F ^a$gdR$a$gdy7 $@&a$gdPgdSYO       J R T d j x ƹxk^NCh_hu5CJaJh"_;h.~CJaJnHo(tHh%CJaJnHo(tHhT&CJaJnHo(tHhk|CJaJnHo(tHh(-CJaJnHo(tHh CJaJnHo(tHh))CJaJnHo(tHhg8CJaJnHo(tHhPlCJaJnHo(tHh_h%CJaJh9CJaJh_hkUCJaJ!jh_hkU0JCJUaJh_hA>CJaJ *,FHNZ (,@ȻȬ{s{fYhLCJaJnHo(tHhEGCJaJnHo(tHhRCJaJh_hx$CJaJh_hGCJaJh_hNxCJaJnHtHh9CJaJnHtHh_hk|CJaJnHtHhe=CJaJnHo(tHh1CJaJnHo(tHh"_;CJaJnHo(tHhk|CJaJnHo(tHhx$CJaJo(h9CJaJPɺ{naTnaannh /CJaJnHo(tHhACJaJnHo(tHh.~CJaJnHo(tHh_h }CJaJh9CJaJh_h\CJaJh_hCJaJh_hv0CJaJh_h+CJaJhEGhx$CJaJnHtHh_he=CJaJnHtHhLCJaJnHo(tHh"_;CJaJnHo(tHhT&CJaJnHo(tH "BJNT\dnpĹĮ~~~~q~q~q~bSHh_hA>CJaJh_hA>CJaJnHtHh_h~7CJaJnHtHhTCJaJnHo(tHh9XtCJaJnHo(tHh~7CJaJnHo(tHh /CJaJnHo(tHh }CJaJo(h_hkUCJaJh_h_CJaJh9CJaJh_h%CJaJh_hpiPCJaJh"_;h.~CJaJnHo(tHh }CJaJnHo(tH"FH\,,-..f0(1*1X3:4<4v44gdIAkgdkU$a$gdf[$a$gdN&$a$gdT$ `a$gdR$a$gd~7$ & F ^a$gdR6,6@BDFHZ\|qfq^UhhCJaJo(hbjCJaJh_h\CJaJh_hhCJaJh_hhCJaJnHtHh_hTCJaJnHtHhN&CJaJnHo(tHh /CJaJnHo(tHhTCJaJnHo(tHhEGCJaJnHo(tHhA>CJaJo(h9CJaJh_hCJaJh_hA>CJaJh_hkUCJaJ\dh,,,,----.. ..(.*.,.h.l.t.v.x.z......Ǹ،sfsfsYfhCJaJnHo(tHh+6CJaJnHo(tHhaCJaJnHo(tHh9CJaJnHtHhN&CJaJnHo(tHhN&CJaJo(h_hkUCJaJh_hA>CJaJh_hA>CJaJnHtHh_hTCJaJnHtHUhMCJaJnHo(tHhzCJaJnHo(tHhCJaJnHo(tH!0 The child and the family shall be entitled to a named and accessible key-worker whose task it is to build, co-ordinate and maintain appropriate support systems which should include a multi-disciplinary care team and appropriate community resources. P[i00h0]0n0[eo00 yr[n0000000k00c0f00iRj0/ec0000n0i{0te0}c0W0f000F0)j)R0 gY000/ec0000h0o00Yw.zk00c0f0ibU000000000h00WWn0>yOnjnn0 gR)R(u0+T00n0g0B000 The child s home shall remain the centre of care whenever possible. Treatment outside of this home shall be in a child-centred environment by staff and volunteers, trained in palliative care of children. P[i00n0ꁅ[o00Sj0P0000n0-N_vj04X@bg0B00}Q000ꁅ[NYn04X@bg0n0lBvo00P[i00-N_n0tXn0-Ng00\PQ}T00n0}0SQ0_0;SBv00000000000k00c0f0cOU000y0M0g0B000 Every child and family member, including siblings, shall receive culturally appropriate, clinical, emotional, psychosocial and spiritual support in order to meet their particular needs. Bereavement support for the child s family shall be available for as long as it is required. hQf0n0P[i00h0]0n0[eDQ_0+T0 o00SOv0`}v0_t>yOv00000000j0bg0 P%Rn0000k0Tc0_00eSvk0u0U00W0D000000SQ00S0h0L0g0M000P[i0001Yc0_0[eo00_B00P000000SQ00S0h0L0g0M000 Adapted from the ACT Charter ACT Carter\PQ}T00TSOaz K00_(u 2008t^10g      Palliative care for children is the active, total care of the child s body, mind and spirit, and also involves giving care to the family. It begins when the illness is diagnosed and continues regardless of whether a child receives treatment directed at the disease. Health providers must evaluate and alleviate a child s physical, psychological and social distress. Effective palliative care requires a broad multidisciplinary approach that includes the family and makes use of available community resources; it can be successfully implemented even if resources are limited. It can be provided in tertiary care facilities, in community health centres, and in children s homes. 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