Profile of Children’s Palliative Care in Portugal raised through the VIII National Palliative Care Conference

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The VIII National Palliative Care Congress in Portugal took place in Lisbon from the 7th-9th April 2016. The conference, attended by nearly 600 people, was an opportunity to raise the profile of children’s palliative care in the country and highlight its importance with all those in attendance. Children’s Palliative Care Advocate Ana Lacerda commented “It is exciting that we have had not only four plenary sessions on children’s palliative care this conference but that included the keynote address, along with sessions on children’s palliative care integrated into each of the parallel sessions, a pre-conference workshop and a meet the expert session. We have come a long way in the last few years and it is encouraging to see the developments, although we still have further to go.”

In the pre-conference workshop, led by Ana Lacerda, participants from diverse backgrounds (Pediatrics, Palliative Care, General Practice, doctors, nurses, psychologists, social workers, teachers) discussed the importance of early referral in children’s palliative care – the need to ensure that children and their families are referred for palliative care early enough that they will benefit from it, and that it will improve their quality of life. The workshop, which involved a mix of presentation and discussions, was a valuable opportunity to discuss challenges and lessons learnt. The only regret is that the room was not big enough to accommodate all who wished to participate.

Following the official opening of the conference, the keynote address was given by Prof. Julia Downing from the International Children’s Palliative Care Network(ICPCN). The address was about the need to extend boundaries in order to increase access to palliative care around the world. Giving examples from the field of children’s palliative care, amongst others, Julia encouraged participants to ‘Step out of their comfort zone’ and to push the boundaries in their own settings in order to increase access to palliative care for children. Much is happening around the world for children’s palliative care but we still have a long way to go, and each one of us has a part to play in our own settings.

Other plenary presentations on children’s palliative care were spread throughout the conference, with presentations on topics such as providing palliative care for children with cerebral palsy (Eulalia Calado), advance care planning in children and young people (Finella Craig), perinatal palliative care (Joana Mendes) and highlighting the importance of standards for children’s palliative care (Ana Lacerda).

Likewise there were presentations on children’s palliative care throughout the concurrent sessions, addressing issues of caregiver support, outcomes of care, interventions in schools, the place of children’s palliative care in the intensive care unit, respiratory management in children with neuromuscular disorders, palliative sedation and dignity in children’s palliative care. Each of the sessions was well attended and there were opportunities for discussion and for sharing experiences between those involved in children’s and adult palliative care.

 It was great to see children’s palliative care integrated throughout the conference with over 25% of the presentations at the conference being on children’s palliative care. The developments in children’s palliative care in Portugal over the past few years have been impressive and there is a committed team ensuring that these developments continue, both in terms of provision of care, education and research. Congratulations to Ana Lacerda and everyone in the organising committee for putting together such a well thought conference, which enabled discussion and left individuals feeling empowered to continue developing children’s palliative care within the country.

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