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How do we bring the principles and practices of palliative care into the care and treatment of some of the sickest children in the hospital - babies and children in intensive care units?
Our studies have revealed a number of misconceptions about Paediatric Palliative Care. These misconceptions impeded access and when addressed led to increased access to palliative care services, making a positive difference in the lives of these children and families. For example, we found that a four hour workshop in Paediatric Palliative Care, delivered locally, in individual neonatal units, with speakers from GOSH Palliative Care team along with speakers from the hospices, community teams serving these children, led to increased referral. We did this in 22 neonatal units across greater London at little to no cost with high rate of return.
Similarly, we found that by having a doctor from the Paediatric Palliative Care team regularly attending rounds and being present at MDTs in the ICU during discussion of goals of care and best approaches to families; referral to Palliative Care increased. These referrals sometimes led to change in place in care from hospital to home.
How do we provide the medical, nursing, social, psychological and spiritual support for ill children and their families need when being in the hospital is neither appropriate nor what they want?
Much of our research with the GOSH PC Team is focused on the care children require when they leave the hospital. The PC Team's work on developing an at home patient controlled analgesia (PCA) service has contributed to more children being able to be cared for at home rather than in the hospital. Key to the success of the program has been the education and training the Louis Dundas Centre offers. The training is based on what we found as a result of the mixed method processual evaluation conducted by the academic unit when the service was being developed and first implemented.
How do parents of children whose condition is deteriorating want to make decisions about care and treatment, place of care, limitations on treatment, and place of death?
Our recently completed pilot study in advanced care planning revealed a number of issues which must be addressed to make the government's policy meaningful and useful and in so doing, as reviewers and audiences have remarked, make a difference in the lives of these children and families, reduce the suffering . For example, parents do not want to make decisions on their own. They would prefer to engage in "joint" or "shared decision making" with the clinicians on such issues as place of care, place of death, limitations of treatment and feeding. Importantly, we found that parents' views on these matters are subject to change over time. They would choose to keep options open and "decide at the time" rather than commit to a particular option, like no resuscitation or no admission to the ICU, in advance of the event.