38 HOW TO TREAT : PAEDIATRIC PALLIATIVE CARE ausdoc . com . au
11 OCTOBER 2024
38 HOW TO TREAT : PAEDIATRIC PALLIATIVE CARE ausdoc . com . au
PAGE 36 and support of anticipatory grieving before the death of a child may ensure improved bereavement outcomes . 39 The GP plays a critical role in bereavement support , referral and surveillance .
THE IMPORTANCE OF THE GP
ALTHOUGH PPC is infrequently encountered , the GP can provide a steady , reassuring presence for the family , be involved with symptom control ( with advice from a specialist PPC service ), and support end-of-life care at home . A trusted GP is crucial in medical treatment decision-making and for psychosocial and bereavement support for parents , siblings and extended family . This is especially important in remote areas . Acknowledging that child death is uncommon , and GPs may not feel confident in this area of practice , the PPC service can help GPs feel empowered , safe and supported in the provision of PPC .
CASE STUDIES
Case study one
JASON , 15 , has been attending his family GP since he was a newborn infant with colic . His mother , a nurse , also sees the same GP since her diagnosis of postnatal depression .
Jason is admitted to the local hospital following a sporting injury , complaining of a painful right hip . Investigations reveal metastatic Ewing sarcoma . Jason undergoes nine months of intensive chemotherapy , with prolonged hospitalisations for pain , and intercurrent infections . He is largely under the care of the hospital oncology team , but the GP is kept abreast of progress by his mother .
Jason ’ s sarcoma progresses despite chemotherapy , and his oncologists advise that the disease is incurable . Jason is given the opportunity to talk about his prognosis with his parents and oncologist . He expresses a strong wish to live life ‘ normally ’, attend school , spend time with friends and stay out of hospital . An advance care plan is completed with Jason ’ s parents , confirming that quality of life is the primary goal , and invasive resuscitation is not in Jason ’ s best interests . This is documented in a letter to the ambulance service and a copy sent to the GP . Jason is referred to a community palliative care service .
The GP is well placed to support Jason ’ s care . The hospital PPC physician offers to join a GP consultation with Jason and his family or meet separately with the GP to plan for Jason ’ s medical care . The PPC physician provides the GP with a written symptom management plan , including suggestions for subcutaneous medications if required . The GP and PPC physician co-ordinate who will review Jason at home , support endof-life care , provide death certification and bereavement follow-up for his family .
Case study two
Cassie , 19 months old , lives with her parents and six-year-old brother in a regional town . She was born a healthy infant and had normal development until 16 months , at which time she displayed signs of developmental regression . The GP refers her to a tertiary PAGE 40
Figure 2 . Symptom prevalence and distress in children with advanced cancer . Based on Wolfe et al 2015 20
Figure 3 . Parental report of frequency and distress for symptoms in children with progressive , non-curable conditions . Based on Steele et al 2014 18
Table 2 . Suggested strategies and language for talking with parents Strategy Establish a landscape for conversation
Silence and listening
Examples
Today I would like to make sure we have an opportunity to share our understanding of your child ’ s health I would like to understand your perspective , share my view , and together develop a plan for how we might manage her / his care moving forward
Provide space for silence and listening , as early and as much as possible Reframing hopes What do you hope for your child , given what we are facing ? Exploring and supporting a breadth of hopes
Establishing clarity about goals of interventions
Join in the parents ’ hope if possible , eg , I really hope we have the diagnosis wrong too I am wondering what else you hope for ? What else is important to you , your child and your family ?
This treatment is being provided to improve your child ’ s comfort and symptoms This treatment may give her / him more time , but it will not cure her / his cancer
Identifying worries and fears What are you most worried about , given what we are facing ?
Normalising the predicament of how to be a ‘ good parent ’ in a palliative care context
Opening dialogue I am wondering if you might feel this way too ?
Validating experience and emotions , and affirming parental role
Avoid only focusing on negatives
Adapted from Katz et al 2021 23
Many parents tell me they feel stuck between a rock and a hard place ; on one hand , they want to ensure they have done all they can for their child to survive , and on the other , they want to protect their child from experiencing pain and suffering
I can hear that your head understands what is happening , but your heart finds it very difficult to accept I cannot imagine how hard this must be I can see how much you are trying to do what is best for your child
It is important to reflect on positive as well as negative aspects of a child ’ s progress and experience