Activity 1: Impact of life-limiting illnesses
Life-limiting illnesses in childhood
Life-limiting illnesses in children can include a varied and diverse range of illnesses and health disorders, including: 
- genetic or congenital disorders
- neurological disorders
- cancers, brain tumours, solid tumours
- respiratory disorders
- gastrointestinal disorders
- cardiovascular disorders
- metabolic disorders
- renal diseases
- immunological disorders.
- life-limiting illnesses for which treatment may be feasible but can fail e.g., cancer
- illnesses where there may be long periods of treatment aimed at prolonging life, though life is ultimately limited e.g., complex cardiac disease
- progressive illnesses with no curative options e.g., neurodegenerative disorders such as Battens Disease, Spinal Muscular Atrophy type 1
- irreversible illnesses causing disability leading to possible health complications and likely life threatening implications e.g., severe cerebral palsy with complex medical conditions.
Illness trajectories for children with life-limiting illnesses are often uncertain, as medical advances are rapidly altering outcomes. This uncertainty can cause significant distress for children and their families/carers. It can also defer appropriate early referral to a palliative care service. 
Impact of life-limiting conditions
Life-limiting illnesses impact physically, emotionally, spiritually and socially on children and their families/carers. The impact of life-limiting illnesses often extends to friends, schools and communities. [2, 3, 8, 9, 10, 11].
For example some life-limiting illnesses are associated with symptoms such as pain. These symptoms can affect the child’s ability to attend school and socialise with other children, with parents and carers becoming children’s main social contacts. [8, 9, 11] Isolation at different stages of a child’s life may affect their physical, psychological, cognitive and social development. Older children who have absences from school often report anxiety about their academic performance.
Children can also be affected by altered self-image, often causing them to strive for normality. 
A child’s experience of living with a life-limiting illness is influenced by their age and developmental stage. It is important to assess each child’s understanding of their illness, as a range of factors including personal experience with illness can influence their experience. 
The following box summarises common features of the child’s concept of death at different ages, although it is important to consider this as a guide as considerable variation can exist. [14, 15, 16, 17, 18, 19]
Table 1. Children’s age related understanding of death and dying
Age 0 - 2 years:
Age 2 - 6 years:
Age 6 - 11 years:
Age 11 years or older:
Children with life-limiting illnesses can experience needs across many domains of health, requiring a comprehensive assessment approach, using language and techniques appropriate to their development stage. Key areas for assessment include:[11, 20]
- physical concerns
- identify pain or other symptoms, using strategies that are age or developmental stage appropriate
- psychosocial concerns
- identify the child’s and family’s fears and concerns
- identify coping and communication styles
- discuss previous experiences with death, dying or other traumatic life events
- assess resources for bereavement support
- spiritual concerns
- discuss spiritual needs
- planning for end of life care
- identify decision makers
- discuss anticipated illness trajectory
- identify goals of care
- consider concerns near end of life
- consider acute resuscitation plan if appropriate
- practical concerns
- plan communication and coordination of health care team
- identify child and family preferences for location of care
- discuss child’s home or school environment
- assess child’s current and future functional status
- identify possible financial consideration on family.
3. Palliative Care Australia. Palliative Care Service Development Guidelines. 2018; Available from: http://palliativecare.org.au/quality.
6. Kendall, M., et al., Different Experiences and Goals in Different Advanced Diseases: Comparing Serial Interviews With Patients With Cancer, Organ Failure, or Frailty and Their Family and Professional Carers. Journal of Pain and Symptom Management, 2015. 50(2): p. 216-224.
8. Children's Health Queensland Hospital and Health Service Paediatric Palliative Care Service, A practical guide to palliative care in paediatrics. 2014, Children's Health Queensland Hospital and Health Service.
9. Palliative Care Australia. Paediatric Palliative Care. 2019 [cited 2019 April 1]; Available from: https://palliativecare.org.au/health-professionals-resources/diagnosis.
14. Moore, C., M. Pengelly, and P. Rauch, Communicating with children when a parent is dying, in Handbook of Communication in Oncology and Palliative Care, D. Kissane, B. Bultz, and P. Butow, Editors. 2010, OUP Oxford: Oxford.
15. Cancer Council Australia. Need support? Talking to kids about cancer 2015 March 2018]; Available from: https://www.cancercouncil.com.au/cancer-information/for-family-and-friends/talking-to-kids-about-cancer/support-and-information/
17. CareSearch. Talking With Children. 2018; Available from: https://www.caresearch.com.au/caresearch/ForPatientsandFamilies
18. Meier, D.E. The Human Connection of Palliative Care: Ten Steps for What To Say and Do. 2018; Available from: https://youtu.be/7kQ3PUyhmPQ.
19. Rauch, P. and R. Arnold. What Do I Tell the Children? Fast Facts and Concepts 2018; Available from: https://www.mypcnow.org/blank-uftnj.
Activity 1: Impact of life-limiting illnesses
- Consider the following conditions and for each, describe possible illness trajectories:
a) Spinal Muscular Atrophy type 1
b) Infantile Battens disease.
- In what ways does a child’s developmental stage influence their understanding of death and dying?