This article comes from Dr Anthony Herbert, a palliative care paediatrician at Children’s Health Queensland, who speaks about the misconceptions around the early introduction of children to palliative care:
One myth in children’s palliative care is that the paediatric palliative care team do not need to be called until there is no hope of cure, the patient is symptomatic or the child is at the end of life stage of the disease.
A contemporary model of children’s palliative care can allow disease modifying therapies to exist alongside symptom management and other palliative care supports. Further it is possible to support children and parents as they hope for the best or a cure, while preparing for the worst at the same time.
Hope becomes an important resource that helps families to cope with life from day to day. There can still be uncertainty in determining the child’s prognosis and this should be seen as a trigger for palliative care referral, rather than a barrier. Living with uncertainty from day to day seems one issue that many of the families that we care for have to live with. In this context, the notion of graduation from a children’s palliative care service can still be possible.
An early referral to palliative care can allow the palliative care team to establish rapport and develop a trusting relationship with the child and family. This allows the team to better understand the needs of the family if and when end of life care is required.
Generally paediatric palliative care services act in a consultative manner, allowing the child’s primary paediatrician and team to remain in charge of the case in partnership with the family. Palliative care acts as an extra layer of support for the child, family and health professions. Things that the palliative care team can bring to the table include meticulous pain and symptom management, multidisciplinary care, emotional and spiritual support, practical supports (e.g. respite and equipment), and care coordination. Care coordination often includes maximising supports within the home and liaison with the school. Some allied health interventions (e.g. psychosocial support, play therapy, music therapy, art therapy, physiotherapy, occupational therapy among others) can be intensified during the transition to palliative care.
Siblings can often benefit also from psychosocial support and expressive therapies. There is much research that needs to be undertaken in children’s palliative care. Randomised controlled studies in adult patients with lung cancer have confirmed the benefits of early integration of palliative care within this patient group. Benefits included improved emotional health and quality of life.
Certainly there is evidence of improved symptom management in paediatrics (pain, shortness of breath, lethargy and anxiety). Studies of our youngest patients further support this notion of early integration of palliative care for families caring for children with life limiting conditions. There is emerging evidence that where a life limiting condition has been confirmed on antenatal ultrasound then it is often helpful for parents to meet the palliative care team before the child is born (1).
Ultimately, however, it is up to the family to choose when they want to meet the palliative care team after discussion with their treating obstetrician, neonatologist or paediatrician. Early referral should be available as an option for all families, if they so choose and their treating clinician is willing to make a referral.
This will hopefully ensure families caring for a child with a life limiting or life threatening condition receive maximal supports at such a difficult time. It will be important to ascertain family’s perspectives on the timing of transition to palliative care in future research.
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(1) Wool C. State of the Science on Perinatal Palliative Care. JOGNN 2013; 42; 372-82.
This article was originally published on the Australian edition of ehospice