THE NURSING OF CHILDREN
KNEBEL AND HUDGINGS5 STRESS THAT THE HEALTHCARE COMMUNITY NEEDS TO FIND A WAY TO TALK ABOUT END-OF-LIFE ISSUES EARLIER IN THE COURSE OF A DISEASE, SO THAT UNNECESSARY CONFLICT BETWEEN PALLIATIVE CARE AND LIFE-PROLONGING TREATMENTS CAN BE AVOIDED SOCIAL, CULTURAL AND ENVIRONMENTAL CONTEXTS ALL INFLUENCE END-OF-LIFE ISSUES FOUR BROAD GROUPS THE ASSOCIATION FOR CHILDREN WITH LIFE-THREATENING OR TERMINAL CONDITIONS AND THEIR FAMILIES (ACT) HAS IDENTIFIED FOUR BROAD GROUPS 3 THESE HAVE BEEN USED TO STRUCTURE THE THE NURSING OF CHILDREN DIFFERENT CHAPTERS INVOLVING SCENARIOS IN THIS BOOK THE VALUE OF THESE CATEGORIES SOON BECOMES OBVIOUS, AS GIVEN THE LONG-TERM NATURE OF PALLIATIVE CARE FOR CHILDREN AND YOUNG PEOPLE, THEY IDENTIFY THE TIMES WHEN FAMILIES ARE MOST LIKELY TO REQUIRE SERVICES THIS CAN ASSIST IN THE PLANNING AND COMMISSIONING OF SERVICES SUCH AS RESPITE CARE PROVISION GROUP LIFE-THREATENING CONDITIONS FOR WHICH CURATIVE TREATMENT MAY BE FEASIBLE BUT CAN FAIL PALLIATIVE CARE MAY BE NECESSARY DURING PERIODS OF PROGNOSTIC UNCERTAINTY AND WHEN TREATMENT FAILS CHILDREN IN LONG-TERM REMISSION ARE NOT INCLUDED EXAMPLES INCLUDE CANCER, AND IRREVERSIBLE ORGAN FAILURE OF THE HEART, LIVER OR KIDNEYS GROUP CONDITIONS FOR WHICH THERE MAY BE LONG PERIODS OF INTENSIVE TREATMENT AIMED AT PRO- LONGING LIFE AND ALLOWING PARTICIPATION IN NORMAL CHILDHOOD ACTIVITIES, ALTHOUGH PRE- MATURE DEATH IS STILL POSSIBLE EXAMPLES INCLUDE CYSTIC FIBROSIS, MUSCULAR DYSTROPHY AND HIV GROUP PROGRESSIVE CONDITIONS WITHOUT CURATIVE TREATMENT OPTIONS, WHERE TREATMENT IS EXCLU- SIVELY PALLIATIVE AND MAY COMMONLY EXTEND OVER MANY YEARS EXAMPLES INCLUDE BATTEN’S DISEASE AND MUCOPOLYSACCHARIDOSIS GROUP CONDITIONS CHARACTERISED BY SEVERE NEUROLOGICAL DISABILITY WHICH MAY CAUSE WEAKNESS AND SUSCEPTIBILITY TO HEALTH COMPLICATIONS SUCH CONDITIONS MAY DETERIORATE UNPRE- DICTABLY, BUT ARE NOT USUALLY CONSIDERED TO BE PROGRESSIVE EXAMPLES INCLUDE SEVERE MULTIPLE DISABILITIES (E G FOLLOWING BRAIN OR SPINAL CORD INJURIES) AND CHILDREN WITH SEVERE CEREBRAL PALSY AS THE ILLNESS PROGRESSES THE EMPHASIS GRADUALLY SHIFTS FROM CURATIVE TO PALLIATIVE TREATMENT NO CURE IS POSSIBLE AND CARE IS PALLIATIVE FROM THE TIME OF DIAGNOSIS HIGHLY TECHNICAL INVASIVE TREATMENTS MAY BE USED BOTH TO PROLONG LIFE AND IMPROVE QUALITY ALONGSIDE PALLIATIVE CARE, EACH BECOMING DOMINANT AT DIFFERENT STAGES OF THE DISEASE AT FIRST IT IS NOT APPARENT THAT THIS WILL BE A TERMINAL ILLNESS AND PALLIATIVE CARE STARTS SUDDENLY ONCE THE REALISATION DAWNS KEY: CURATIVE PALLIATIVE FIGURE 1 1 CURATIVE AND PALLIATIVE CARE RELATIONSHIP (ADAPTED FROM ACT AND RCPCH4) THE NURSING OF CHILDREN