Palliative Care clinical outcomes

The Specialist Paediatric Palliative Care (SPPC) service at Great Ormond Street Hospital (GOSH) provides care to children with life-limiting and life-threatening conditions and their families. We are the largest SPPC team in the UK and receive around 200 new referrals every year. Some patients are with our service for a short time, while others receive palliative input for several years.

The service works with other hospital, community and hospice teams to ensure children and families receive coordinated care for their condition. We specialise in managing complex symptoms and helping our patients make difficult decisions regarding care when cure is not possible and living to adulthood is unlikely.

Every child and family is different, and the team provides a variety of types of support depending on a patient’s needs. For those children who reach the end of their life while under our care, this includes helping them and their families to be where they want to be when they die. We call this a child and family’s 'preferred place of death'. The clinical outcomes we report below measure this aspect of our service.

To demonstrate our treatment effectiveness and to inform our commitment to continuous improvement, in September 2013 we began to collect more data about our service. Here, we report data on deaths recorded by the service between April 2014 and March 2022, for which all of these measures are relevant:

We include this metric because it is a national measure for palliative care. We believe offering choice of place of care at the time of death is essential. Home is often cited as the preferred place of death for children, but there is no strong evidence to support this [1].

Home should be included as one of these choices, but no family should feel pressured into caring for their child at home or that they have ‘failed’ if they or their child feel this is not the right place. However, for those who feel that home is the right choice, we need to make sure that we can work with the family and community teams to ensure they have the around-the-clock support they need.

[1] Bluebond-Langner M, Beecham E, Candy B, Langner R, Jones L (2013) Preferred place of death for children and young people with life-limiting and life-threatening conditions: a systematic review of the literature and recommendations for future inquiry and policy. Palliat Med 27(8): 705-13.

It is important that children and families are part of decisions relating to their end-of-life care and that their preferences are taken into account by the healthcare professionals involved. This includes being able to discuss where they want to be at death, and this is something the SPPC team can help with.

Sometimes it is not possible to have these conversations. For example, a child or family may not feel able to consider death as a possible outcome, so are not able to engage in considering a preferred place. There can also be occasions when a child cannot be moved without causing immediate injury or death. However, in cases where it is appropriate to have this conversation, we aim to ensure that the child and family’s voices are heard, and we collect this data as a measure of the effectiveness of our care.

Of those patients who died while under our care and for whom a discussion of preferred place of death was appropriate, almost all (99.2%, n=656/661) were offered a discussion.

Discussing preferred place of death with a child and their family is one important step, but we must then endeavour to achieve those preferences. This can involve coordinating services inside and outside hospital and providing specialist symptom management support so that high-quality care can be provided at the end of life in the chosen setting. This also involves supporting the child and their family if their preference changes.

Of those patients who died while under our care and who discussed their preferred place of death with us, 91.2% (n=521/571) achieved their preference. A further 4.4% (n= 25/571) were undecided or a consensus between family members had not been agreed, and 4.4% (n=25/571) of children and families did not achieve their preferred place of death.

We will continue to collect and review the data about the services we provide, and to seek to add more measures that tell us about our effectiveness.

Enabling children, young people and their families to choose where they are cared for at the end of life is really important.

Recording information about end of life care enables us to identify that these conversations are taking place, and why some families are not able to achieve their preference. It also enables us to plan ahead. For example, since 2020, our data has shown that more families preferred to be at home. We have therefore ensured our workforce can step up to deliver more home care and that we have sufficient equipment to facilitate this. We also liaise with local teams to deliver this care, with regular training being provided to use our equipment safely.