50 Focus
Breaking bad news Adolescent patients with a terminal prognosis must be involved in decisions that concern their end of life care, writes Tyrone Horne
communication with trusted adults other than parents, engagement in collaborative decision-making with parents and profes- sionals”. Work is underway within hospitals and related services to implement these recommendations. The adolescent brain is still develop- ing and is relatively immature. It can’t yet control emotion or make decisions in a rational fashion. 4 Adolescents with life-lim- iting conditions will continue to talk about long-term future plans despite being aware of their terminal prognosis. However, it is sometimes said that teenagers are more realistic about their fate than their parents are. Adolescents often highlight that infor- mation is directed to their parents, who act as ‘gatekeeper’ to that information. In 2000 the government produced the National Children’s Strategy in which it was stated: “Children will have a voice in matters which affect them and their views will be given due weight in accordance with their age and maturity.” 9 Parents and healthcare professionals can help adoles- cents with their ability to communicate by allowing them greater independence and thereby allowing them greater auton- omy. By doing so the adolescent feels that their caregiver is supporting them more and therefore they do not feel so isolated and feel safer discussing their worries and emotions. It is also important to remember the key place of the healthcare professional in helping parents communicate with their child. Giving the parent the information first and giving them time to absorb it allows the parent to then pass the informa- tion on to their child. It is also important to give accurate, truthful information to adolescents so as to give them a sense of
children’s nurses often say they are not equipped to care for teenagers or commu- nicate effectively with them. With this in mind the question needs to be asked: who is suitable to care for this cohort? Nicholl and Tracey 5 highlight the importance of recognising the difference between chil- dren’s and adults’ palliative care needs and suggest that children’s nurses are best suited to provide adolescent care. The age at which adolescents move from children to adult services can differ greatly, with many adolescents and healthcare professionals believing that a specific room for adolescent patients would be hugely beneficial within children and adult ser- vices. Chronically sick teenagers struggle with the sudden change of being relocated to an adult ward where they can feel the healthcare professionals cannot meet their age-related needs. 6 Transition to adult services should always take place gradu- ally and incorporate a parallel discharge towards end of life care and/or transfer to adult services. Grinyer 7 describes the need for this transition as “bridging the gap”. Bridging the gap is one of many ways in which we can help adolescents through this transition. Although it is acknowledged that the young person will die, they should not be prevented from living until that time comes. The Department of Health 8 dis- cussed adolescence in its national policy, Palliative Care for Children with Life-Lim- iting Conditions in Ireland and described “the need for improved transition from paediatric to adult services, the need for improved facilities for adolescents when in hospital, the need for more education for carers who have to deal with adolescents, opportunities for privacy, interaction and
Though not a marginalised group, adolescents can feel marginalised in the healthcare context as they often don’t fit within existing children/adult services. 1 This feeling has been described as ‘at the edge of no-man’s land’. 2 When caring for an ado- lescent with a life-limiting condition, it can be difficult to respect both their cognitive ability and their wishes, while also pro- viding the best care possible for them and their family. Unlike with younger children for whom parents make the decisions, or with older adults who have their own voice, this cohort presents a challenge to healthcare professionals when communicating, 3 espe- cially with respect to their life-limiting condition. Although it is sometimes dif- ficult to communicate with adolescents, they have opinions of their own and want these opinions to be acknowledged. Adolescents with palliative care needs are a distinct group with specific physical, emotional, psychosocial and social needs. Their demands are very different to those of younger children or adults. Beresford and Stuttard 4 highlight the importance of recognising and respecting adolescents during this transitional stage, while still fully supporting the needs associated with their life-limiting condition. The authors discuss how even within adult care settings adolescents are in the minority as many of the other patients are older adults. The authors go on to highlight that staff from these areas often have little experience of caring for adolescents with life-limiting conditions. Historically, adolescents with life-lim- iting conditions such as cystic fibrosis or Duchenne muscular dystrophy would likely not survive into adulthood. However
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