36 HOW TO TREAT : PAEDIATRIC PALLIATIVE CARE ausdoc . com . au
11 OCTOBER 2024
36 HOW TO TREAT : PAEDIATRIC PALLIATIVE CARE ausdoc . com . au
broad geographic spread , necessitates a consultative and collaborative model of care ( see figure 1 ).
Medical care is typically centralised around the hospital , with various subspecialist teams who come to know the children and their families well , often over years . As a child deteriorates , it becomes increasingly important to bolster supports beyond the hospital , integrating with the GP and community palliative care services .
SYMPTOMS
CHILDREN with LLCs experience a range of symptoms , with pain , fatigue and drowsiness being common ( see figure 2 ). 13 The Memorial Symptom Assessment Scale and its short-form version address patient-reported outcomes ; both have been adapted and validated in children with cancer . 14-17 High symptom burden and associated distress in the malignant cohort are mirrored in children with progressive , non-malignant conditions ( see
14 , 15 , 18-20 figures 2 and 3 ).
Symptom management is an essential aspect of palliative care across a child ’ s lifespan . Much of the approach in paediatrics is modelled on adult experience , utilising multimodal therapies and individualised symptom management plans . Management of respiratory secretions , seizures , muscle tone related problems and psychological issues in PPC can be complex and requires collaboration with treating subspecialists .
The PPC physician can develop a symptom management plan ( see figure 4 ), which should be distributed to all members of the team . A correlating parent plan to guide management in the home may also be developed .
CONCEPTUAL FRAMEWORKS FOR UNDERSTANDING CHILD AND FAMILY EXPERIENCES
UNDERSTANDING how parents and children navigate the possibility of a child ’ s death is critical ( see box 2 ). While there is no universal approach , parents ’ beliefs about what constitutes a ‘ good parent ’ when their children are seriously ill influences their medical decisions , and better understanding of these beliefs may improve decision support . 22
The notion of a ‘ good parent ’ draws out potentially competing parental motivations . Hope can be misconstrued as ‘ denial ’ but Katz et al explain , that “ hope is dynamic , helpful , associated with improved quality of life and a means to allow individuals to live in the present ”, and that parents can hold hope and reality-based thinking concurrently ( see table 2 ). 23 , 24 Parallel planning provides for two sets of plans , allowing clinicians to engage parents in both hope ( the child ’ s cure or recovery ), and if that is not possible , reality-based thinking ( ensuring the child does not experience undue suffering ).
Parents of seriously ill children often provide advanced medical care in the home . For parents who have provided life-sustaining treatments ( for example , home oxygen / ventilation , airway suction , artificial feeding ), when the time comes to withdraw these interventions , they may feel they are withdrawing ‘ parental responsibilities ’ and
Adapted from Children ’ s Health Queensland Hospital and Health Service , 2014 12
Community
• GP
• Local paediatrician
• Community palliative care nurses
• Psychologist / psychosocial support
• Community therapists
• Local pharmacy
• Health charity organisations
• Friends and community
• School
Figure 1 . Model of family-centred paediatric palliative care .
Box 1 . How paediatric differs from adult palliative care
• Child death is very uncommon , making it challenging for paediatricians to maintain skills and confidence in PPC .
• A heterogeneous group of rare , non-malignant conditions ( neurological , metabolic , genetic , cardiac and respiratory diseases , and severe acquired brain injury ) make up the majority of diagnoses leading to child death . 9 Some of these are genetic , so families may have multiple children affected and die .
• Cancer accounts for less than half of child deaths .
• Diagnosis and prognostication are difficult with unpredictable disease trajectories .
• Children receive palliative care for about 40 % longer than their adult counterparts . 10
• PPC includes a broad range of ages and developmental stages , each with unique physical , psychological , emotional , social and spiritual considerations .
• The primary specialist , supported by subspecialists and PPC , generally maintains oversight of medical care from diagnosis through to death .
• Perinatal palliative care may be provided alongside standard antenatal obstetric care .
• Family-centred care is essential : — Parental grief may start at the point of diagnosis and persist throughout the child ’ s life and beyond , without easing over time . — Parental identities ( including career and financial positions ) are challenged as they become healthcare providers for their child . — Siblings ’ needs are sometimes overlooked as their sick sibling ’ s healthcare may dominate the family dynamic . — Grandparents experience ‘ double grief ’ as they watch their children and grandchildren navigating the path of
LLCs , while experiencing significant loss themselves .
• Separating parents ’ and children ’ s rights and needs can be difficult : — Parents hold responsibility for medical treatment decision-making , with guidance from their child ’ s doctor . — Children may be involved with medical treatment decision-making to varying degrees . — Infants and children with severe neurological impairment may be unable to speak for themselves and require ethical considerations to respect their individual rights independently of their parents . — Adolescents have emerging autonomy and varying degrees of capacity to make medical treatment decisions .
• Education and play are essential childhood tasks which should be prioritised , even through the most serious of illnesses .
• Children with LLCs are managed by a large ( sometimes fragmented ) team of clinicians and services across hospital and community settings . This requires streamlining of consultation and collaboration to avoid complicating care delivery and communication .
Adapted from Palliative Care Australia 2018 11
abandoning their child ’ s care . Feeding is a means of nurturing and connection between parent and child . Parents may have strong emotional
responses to weaning feeds when a child ’ s life , or feeding itself , becomes burdensome . Hospital clinical ethics committees may assist with decisions to continue or discontinue feeding . It
Child and family
Specialist PPC consultancy
is worth acknowledging the pre-existing relationship between child and parent , and how this is likely to influence communication , coping and
‘ Mutual pretence ’ describes parents and children protecting one another from awareness that the child is dying .
decision-making ( see box 1 ). ‘ Mutual pretence ’ describes a dynamic where parents and children protect one another from the awareness that the child is dying . 25 , 26 It is important to
Hospital
• Paediatric specialist team
• Social worker
• Occupational therapist
• Physiotherapist
• Pharmacist
• Art and music therapists
• Hospital support and administrative staff
separate the needs of clinicians , parents and children , and keep the child central to decision-making , while maintaining respect for the parental role and relationship ( see figures 5 and 6 ).
ADVANCE CARE PLANNING AND DECISION-MAKING
ACP is “ a process of discussions between families and healthcare providers about preferences for care , treatments and goals in the context of the patient ’ s current and anticipated future health ”. 27 The most important element is the process of reflection and information sharing as this helps families and clinicians make the best decisions in a medical crisis . 28 ACP tools exist to guide professionals in paediatric ACP ( for example , Thinking Ahead ). 28 Age-appropriate resources such as ‘ Voicing my choices ’ are available for adolescents to document their preferences together with a trusted
29 , 30 health professional . In paediatrics , an ACP does not constitute a legally binding document ; parents retain legal decision-making responsibility for their children and are expected to do so if their child is unable to speak for her / himself . 31 In practice , paediatric medical treatment decision-making involves three parties who may hold conflicting views : the child , her / his parents and doctor ( s ).
The traditional approach to decision-making focuses on the child ’ s best interests . ‘ Best interests ’ implies there is a single best outcome , which is useful when all parties agree , however , is liable to subjectivity and there may be several reasonable and conflicting interests that could be upheld . In response to these challenges an ethical tool , the Zone of Parental Discretion was developed . 32 Parents may make decisions for their children that are ‘ good enough ’, even if not in keeping with the clinician ’ s recommendations — as long as this does not meet a threshold of unacceptable harm . The Zone of Parental Discretion supports the legal and ethical imperative that doctors should not be compelled to provide treatment which they perceive as excessively burdensome or harmful . 31 Children may hold views about their own care , and these should be considered in accordance with the child ’ s cognitive and developmental capacity and the family context .
Talking directly with children about their own health and mortality can be difficult . Respect the existing family culture of communication , and ensure children and parents receive information in a way that works for them . Some children may prefer all information to be filtered through their parents . Others want to know everything about their own health ; however , ‘ truth-telling ’ without parental support can cause children harm .
END-OF-LIFE CARE AND BEREAVEMENT
HOW a child is cared for at the end of their life has far-reaching impacts of grief across a lifetime , encompassing a network of extended family , friends , school systems and communities . 33 , 34 When approaching end-of-life , children and their families may prioritise being in a less clinical environment such as a hospice or home , however many children and families feel safest in the hospital that has become a ‘ second home ’ over many years .
The death of a child represents a primary loss for parents , in addition to a myriad of secondary losses including parental identity , routines , relationships and supports within the child ’ s healthcare network . Bereaved parents are at risk of psychosocial
35 , 36 morbidities and complicated grief . Parents consistently acknowledge the individuality of their own bereavement experiences and this requires flexibility in terms of the range , timing , location and type of interventions offered to them ( see table 3 ). 34 , 37 , 38 Acknowledgement PAGE 38