72 participants from across Malaysia and Singapore attended a three-day workshop on children’s palliative care in Kuala Lumpur last week. The workshop, run by Hospis Malaysia, was their 5th annual paediatric palliative care workshop with invited facilitators Dr Ross Drake from Starship Children’s Hospital’s palliative care unit in Auckland, New Zealand and Prof Julia Downing from the International Children’s Palliative Care Network (ICPCN). The workshop, held at Hospis Malaysia, covered a wide range of topics including assessment, pain and symptom management, challenging communication, palliative care for adolescents, ethics, decision making and end-of-life care and bereavement.
The workshop consisted of short presentations followed by facilitated breakout sessions for group work and case discussions. The small group breakout sessions encouraged much discussions and reflective learning, in particular the session looking at how we as health professionals, impact on the suffering of the children and families that we care for – either positively in reducing their suffering through the way that we care for them, but also how we can inadvertently increase their suffering. Participants shared their own experiences and discussed how they could improve the care that they provide, and ensure that the children and their families have access to quality palliative care services.
More advanced issues
On the third day, the workshop progressed to looking at more advanced issues. In the morning participants brought four case studies to the group so that they could be discussed on how best to proceed in the individual cases. The cases included that of a nine month old with congenital muscular dystrophy with perinatal hypoxic ischaemic brain injury, Trisomy 18 (Edwards syndrome) with eventration of the diaphragm and heart failure, a five year old with congenital nephrotic syndrome requiring renal replacement therapy and an ex-premature baby who is ventilator dependent at 5 months of age. A wide range of issues were discussed including that of withdrawing or withholding treatment, how much treatment is too much, working with health professionals who are not supportive or misunderstand palliative care, supporting parents to take their children home to die, home ventilation, advanced care planning and ethical dilemmas.
Participants had a range of experiences and with the guidance of the facilitators, they were able to formulate plans on how the cases could be managed. Role plays were utilised in order to give participants the opportunity to play out different scenarios and try different options. An interesting discussion took place with regards to the role of social media in palliative care, exploring issues around what to do when you find that the family have been putting negative comments about the care they were getting on facebook, or when the family have researched all about the disease and want their child to be entered into a Phase I trial that they have heard about.
Research and evidence based practice
In the afternoon, the workshop progressed to looking at integrating research and evidence based practice into clinical practice in children’s palliative care. Expectations of the workshop included how we can implement palliative care in low-resource settings, how we can understand the literature and how we utilise the literature in practice. Different types of evidence were discussed, ranging from expert opinion through to systematic reviews and meta-analysis. Participants were given a paper to review which utilised a mixed methods approach and so demonstrated both quantitative and qualitative analysis and reporting. The paper, about the evaluation of a link-nurse programme in Uganda, answered the question posed at the start of the workshop with regards to the implementation of palliative care in low-resource settings.
Getting the research question right is as important as obtaining the answer to the question, and is the driving force behind research. Thus participants were given the opportunity to identify a potential research question and to begin to formulate it utilising the FINER approach i.e. ensuring that the research question is Feasible, Interesting and Innovative, Novel, Ethical and Relevant. Thus by the end of the workshop participants had had the opportunity to explore several different potential research questions, including one to explore the perceptions of palliative care of health professionals working in different hospitals.
Throughout the three-day workshop participants appreciated the input from their colleagues, the external facilitators and those from Hospis Malaysia. It was a great opportunity for learning, networking and sharing experiences with each other. At the end of the workshop, feedback from participants were positive with many finding the workshop beneficial and strongly meeting their learning needs. Many now felt enlightened them to consciously not increase suffering for their patients and families.