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Learning modules

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: [1]

  • genetic or congenital disorders
  • neurological disorders
  • cancers, brain tumours, solid tumours
  • respiratory disorders
  • gastrointestinal disorders
  • cardiovascular disorders
  • metabolic disorders
  • renal diseases
  • immunological disorders. 

These illnesses can be divided into four broad groups that are associated with differing trajectories: [23, 456]

  • 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. [7]

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.[12] 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. [13]

A child’s experience of living with a life-limiting illness is influenced by their age and developmental stage.[9] 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. [11]

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:

  • sees death as separation or abandonment
  • has no cognitive understanding of death
  • feels despair from disruption of caretaking

Age 2 - 6 years:

  • often believes that death is reversible, temporary
  • may perceive death as a punishment
  • engages in magical thinking that wishes come true - may feel guilt for negative feelings toward the person who died, and think that was the cause of death

Age 6 - 11 years:

  • shows gradual understanding of irreversibility and finality of death
  • demonstrates concrete reasoning with ability to comprehend cause and effect relationship

Age 11 years or older:

  • understands that death is irreversible, universal, and inevitable
  • has abstract and philosophical thinking.

 

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.

Thinking points


REFERENCES

1. Feudtner, C., et al., Pediatric Palliative Care Patients: A Prospective Multicenter Cohort Study. Pediatrics, 2011. 127(6): p. 1094-1101.

2. Association for Children's Palliative Care (ACT), A Guide to the Development of Children's Palliative Care Services. 2018: Bristol.

3. Palliative Care Australia. Palliative Care Service Development Guidelines. 2018; Available from: http://palliativecare.org.au/quality.

4. Murray, S.A., et al., Illness trajectories and palliative care. BMJ : British Medical Journal, 2005. 330(7498): p. 1007-1011.

5. Murray, S.A., et al., Palliative care from diagnosis to death. BMJ, 2017. 356.

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.

7. Haines, E.R., et al., Barriers to accessing palliative care for pediatric patients with cancer: A review of the literature. Cancer, 2018. 124(11): p. 2278-2288.

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.

10. Therapeutic Guidelines Ltd, Support for families and carers in palliative care. 2019: Melbourne.

11. Therapeutic Guidelines Ltd, Principles of paediatric palliative care. 2019: Melbourne.

12. Howe, C., Peer Groups and Children's Development : Psychological and Educational Perspectives. 2009, Wiley-Blackwell: Chicester.

13. Li, H., O. Chung, and S. Chiu, The impact of cancer on children's physical, emotional and psychosocial well-being. Cancer Nursing, 2010. 33(1): p. 47-54.

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/

16. Kopchak Sheehan, D., et al., Telling adolescents a parent is dying. Journal of palliative medicine, 2014. 17(5): p. 512-520.

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.

20. Himelstein, B.P., et al., Pediatric Palliative Care. New England Journal of Medicine, 2004. 350(17): p. 1752-1762.