42 HOW TO TREAT : PAEDIATRIC PALLIATIVE CARE
42 HOW TO TREAT : PAEDIATRIC PALLIATIVE CARE
11 OCTOBER 2024 ausdoc . com . au
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How long have we got left ?
He hasn ’ t eaten for days , shouldn ’ t we do something ?
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How do we tell him and our other children he is dying ?
Isn ’ t morphine addictive ?
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How do we know she has died ?
What do we do if he has a fit ?
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Source : Children ’ s Health Queensland Hospital and Health Service , 2014 12 Used with permission . © State of Queensland ( Children ’ s Health Queensland ) 2022 |
and gentle conversation , eventually
, he says “ I have been thinking about my library books . They ’ re late , and I ’ m worried I won ’ t get to return them .”
CONCLUSION
CHILDREN with LLCs constitute a relatively small number of all deaths ; however , a child ’ s experience of illness and death has far-reaching implications . Specialist PPC providers can support and guide the GP to participate in family-centred care that is integrated across hospital and community settings . Being equipped to address the child and family experience , and an openness to having difficult conversations , pave the way for improved end-of-life care for children , and less complicated bereavement for parents and siblings .
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Will she have pain as death gets closer ?
Do we phone the police if he dies at home ?
How to Treat Quiz .
1 . Which THREE statements regarding PPC are correct ? a Child mortality rates decrease substantially after infancy and continue to decrease until the teenage years , when they increase . b PPC focuses on quality of life for the child and family support and includes management of distressing symptoms . c The terms life-limiting and life-threatening are interchangeable . d The death of a child has a profound and lasting effect on their parents , siblings , carers , friends , health professionals and communities .
2 . Which TWO features are specific to paediatric as distinct from adult palliative care ? a Child death is very uncommon . b Cancer accounts for more than half of child deaths . c Children are managed by a large team of clinicians and supports which require streamlining of consultation and collaboration . d Focus is on the child ’ s health , at the expense of education and play .
3 . Which THREE factors in PPC necessitate a consultative and collaborative model of care ? a Cost . b The low number of patients . c Patient heterogeneity . d Broad geographic spread .
4 . Which ONE is the least common symptom experienced by children with advanced cancer ? a Pain . b Sleep disturbance . c Lethargy . d Drowsiness .
5 . Which THREE statements regarding symptoms in PPC are correct ? a Feeding is a means of nurturing and a connection between parent and child . b PPC services provide care for children only once it is clear they are in the final days or weeks of life . c Symptom management is an essential aspect of palliative care across a child ’ s lifespan . d The PPC physician ’ s management plan should be distributed to all members of the team .
6 . Which TWO statements regarding ACP and decisionmaking are correct ?
How long will we grieve ?
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a The most important element is the process of reflection and information sharing . b Decision-making involves the child , her / his parents and doctor ( s ). c In paediatrics , an ACP constitutes a legally binding document . d The Zone of Parental Discretion compels doctors to provide any treatment which they perceive as unacceptably burdensome or harmful .
7 . Which THREE are parents ’ beliefs about the priorities of a ‘ good parent ’? a Ensuring their child felt loved . b Focusing on the child ’ s health . c Making informed decisions . d Not delegating their child ’ s care to anyone else .
8 . Which TWO are suggested strategies for talking with parents ? a Establish a landscape for conversation . b Providing false hope . c Dismissing worries and fears . d Avoid only focusing on negatives .
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PAEDIATRIC PALLIATIVE CARE
Figure 6 . Parents .
9 . Which THREE statements regarding end-of-life care and bereavement are correct ? a The death of a child represents a primary loss for parents , in addition to a myriad of secondary losses . b The death of a child may increase the risk of bereaved parents developing psychosocial morbidities as well as complicated grief . c Standardised bereavement support and intervention models yield the best outcomes . d Acknowledgement and support of anticipatory grieving before the death of a child may ensure improved bereavement outcomes .
10 . Which THREE are contemporary models of grief and loss ? a Continuing bonds , where the bereaved finds ways to redefine the relationship with the deceased . b Styles of grieving , including focus on what can be changed and what cannot . c Growing around grief , where the expectation changes to approximate the reality . d Meaning reconstruction , describing a process of reconstructing a meaning from a grief and loss experience .
FURTHER READING
• Hain R , Goldman A , Rapoport A , Meiring M ( 2021 ). Oxford Textbook of palliative care for children , third edition . Oxford : Oxford University Press .
• Wolfe J , Hinds P S , Sourkes B M ( 2011 ). Textbook of interdisciplinary pediatric palliative care . Philadelphia : Elsevier / Saunders .
• Bluebond-Langner M . The private worlds of dying children ( 1980 ). Princeton : Princeton University Press .
RESOURCES
• Palliative Care Australia : Paediatric palliative care bit . ly / 3HeUH8y
• Children ’ s Health Queensland Hospital and Health Service Paediatric Palliative Care Service : A practical guide to palliative care in paediatrics bit . ly / 3Ihi56G
• Association for Paediatric Palliative Medicine : Master formulary 2020 bit . ly / 3Dh82w5
• Together for Short Lives ( UK ) bit . ly / 3H4bTPc — A guide to children ’ s palliative care bit . ly / 3BIr3Yd
— Basic symptom control in paediatric palliative care bit . ly / 3IgvZ9b
• Victorian Department of Health : Thinking ahead resources bit . ly / 3n0moet
• The Royal Children ’ s Hospital Melbourne : The Victorian paediatric palliative care program bit . ly / 3wzhkB2
• Quality of Care Collaborative Australia bit . ly / 3Autxtb
• Five Wishes : Voicing my choices bit . ly / 40Ak8eu
Acknowledgements The author wishes to thank Associate Professor Jenny Hynson , who has provided mentorship and guidance throughout her career , and has provided review and feedback on this manuscript . I would like to also thank Dr Naomi Katz and Leah Rotin for their manuscript review and feedback . Most importantly , I wish to acknowledge Eliza , her family , and all the parents and young people who entrust their care to me and teach me so much .
References Available on request from howtotreat @ adg . com . au