Day two of the conference got under way with the same energy and enthusiasm as had been seen the previous day. Dr Stefan Friedrichsdorf started by addressing the issue of pain control and accessibility and availability of opioids around the world. He challenged delegates that it is essential that we take pain away in end of life care for children, yet the reality is that the younger you are the less likely you are to get good pain management. He noted that unless medications reach the site of action they can’t be expected to exert their dynamic effect – so if morphine does not reach the patient, what hope is there for pain relief?
Key component
One of the key components of improving pain management in children, alongside accessibility to medications, is education of health professionals so that once available, medications are utilised. The theme of education was explored by Prof Julia Downing, who looked at the issue of education for children’s palliative care around the world. She shared some of the key principles and challenges around education in children’s palliative care and then discussed some of the key concepts address in a soon to be published white paper from the EAPC with regards to core competencies for children’s palliative care at the undergraduate, continuing education and specialist levels. She then shared examples of different types of training programmes, noting that it is important that any education programme is based around competencies such that the health professionals are ‘fit-for-practice’ on completion of the programme.
Joan Marston then went on to discuss challenges and successes in expanding palliative care for children around the world. Whilst noting that the development of children’s palliative care has been slow in many parts of the world, great strides have been made in the past few years. Centres of excellence and model programmes exist in different parts of the world and development of children’s palliative care cannot always be linked to resource limitations, but is supported by effective networking, leadership and sharing of knowledge and information. She gave examples of different projects and programmes, identifying key components of their success.
Having looked at the global perspective, Anna Garchakova went on to share the perspectives from Belarus. She looked at the development of children’s palliative care in the former USSR giving examples from different countries. She noted that whilst much has been achieved there is still a lot to do and that in order to foster the development of children’s palliative care services it is necessary to combine the efforts of NGO’s and state organizations, improve the legal base, train palliative care specialists at all levels and work together.
Ethical issues
Katrina McNamara from Together for Short Lives, gave an overview of ethical principles and consideration of the legal and ethical issues involved in the withdrawal of life sustaining treatment. She then introduced the RCPCH guidance and five situations where the withdrawal of treatment is acceptable and described the development of the ACT care pathway for extubation, the three phases and six standards in the document.
This led on to the discussion of Advanced care planning by Dr Mile Miller from Martin House in the UK. He set out the principles of care planning, especially when the future is uncertain, moving towards advanced care planning and end of life care, focusing on the conversations with parents throughout this process. He stressed the need for different options to prepare the family for the approaching death, with practical advice of what to expect.
End-of-life care
The theme of end-of-life care was continued by Natalia Savva, from the Russian Children’s Palliative Care Foundation who set out the challenge of doing something to improve life for children and young people and at the same time not burdening the child with the treatment. It is important to remember the steps to address disease and at the same time improve the quality of life. Therefore we need to have individual approaches and discussions with parents. Informed consent is also important as it gives patient a certain status and access to treatments. However, it is important that we manage the process as best as we can so that parents can say farewell to their child. The challenge is often to satisfy the child’s needs as well as the families, and families will often call services because they are afraid and alone
Telemedicine
Dr Anda from Lativia had the opportunity to discuss the development of their telemedicine programme. With only a population of 2 million people, there are few children that need palliative care They support the children with a multi-disciplinary team which includes clinical, psychological and spiritual support, funded partly by the state and partly through fundraising. This year they have seen 150 families and provide a 24 hour service in a 100km radius around the city, and provide support through telemedicine.
The morning plenary session was concluded by Peter Ellis, from Richard House in the UK talking about the importance of community engagement and children’s palliative care. Specialist services probably only offer support for about 5% of the time, thus the community are vital in the care of the child and their family. Death, dying, loss and grief is everyone’s business and community engagement is about building capacity, it is holistic and is in addition to professional services, not instead of, but isn’t widely recognised within children’s palliative care. Current systems and services will not be able to manage. However, communities have always been involved in the care of the dying – they think and act in different ways. Peter shared examples from Kerala in India and Bury St Edmunds in the UK and challenged delegates that we need to ‘aim to liberate children to live their lives!’
Thus the morning sessions covered a wide range of topics, aimed at improving of the care that we provide for children with life-limiting and life-threatening conditions. The afternoon, continued on that theme with workshops held on pain management, and parallel sessions that explored issues around psychological aspects and communication, alongside programmatic issues and volunteering.
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