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Behind the headlines: What is children’s palliative and hospice care?

News and comment

The heartbreaking story of Archie Battersbee is being played out very publicly in the media, and Archie’s story has evoked very strong feelings and different perspectives as well as bringing families’ own experiences to front of mind.

Our thoughts are with Archie Battersbee, his family, loved ones and those caring for him and it’s vital that Archie’s family are given the space and privacy to spend precious time together.

Discussing children’s palliative care and end of life care of children is always a difficult subject, as it is a specialist area that most people never have to experience. With this in mind we thought it would be helpful to share some information to clarify what terms like children’s palliative care and withdrawing life-sustaining treatment mean and explain in more detail the role of children’s hospices.

What is Children’s Palliative Care?

Palliative care for children and young people with life-limiting or life-threatening conditions is an active and total approach to care, from the point of diagnosis or recognition throughout the child’s life and death. Children’s palliative care is life-long supportive care. It’s all-encompassing care, provided to children and their families over time. Alongside medical care, children experience therapeutic treatments, home visits and different types of support involving a huge range of activities. This support extends to the whole family with parents and siblings involved throughout. It includes the management of distressing symptoms, provision of short breaks and care through death and bereavement.

When a child is at the end of their life, quality palliative care will ensure a child’s comfort and help manage pain and symptoms, as well as providing support and care for the whole family.

When doctors talk about palliative care, not continuing with treatment or allowing someone to die it can sound frightening. But none of these approaches mean abandoning the child’s care, pain management or comfort. When treatment stops, palliative care will continue and this should include pain and symptom management, as well as care and support for the whole family.

Children’s palliative care is never about giving up. For any family facing their child’s end of life – it’s vital to understand that stopping active treatment does not mean stopping care.

Choice of care at end of life

When a child is diagnosed with a condition that means they are going to die – it’s vital to have open and honest conversations with the family. Having open and frank communications about end of life plans early on, exploring options and wishes and what’s possible, is invaluable. Good and open communication should be a continuous thread throughout a child’s life.

But no two situations will be the same, choices will be limited by many complex factors; every child’s care in life, and at the end of life will be unique.

Choice may depend on what services are available locally – for example some families may want to take their child home or to a children’s hospice for end-of-life care, but this may not be achievable if the child is too fragile to travel, or if there are concerns that a child could die in an ambulance on the way to another location. Families may also change their minds about what they want and there needs to be ongoing communication so that care can be responsive.

What do children’s hospices do? Can they support children at the end of their life?

There are currently 54 children’s hospice services across the UK, providing support for children with life-limiting or life-threatening conditions and their whole family.

Children’s hospices provide vital support to families caring for children with life-limiting or life-threatening conditions at the hospice, at home and in the community. They are full of light and joy and offer a lifeline to children and families. Children’s hospice care is life-long supportive care for children with life-limiting conditions. It’s all-encompassing care, provided to children and their families over time.

The range of services offered may vary from children’s hospice to hospice, but can include:

  • 24-hour telephone support
  • practical help, advice and information
  • specialist short break care
  • specialist therapies, including physiotherapy, complementary therapies, play and music therapy
  • 24-hour access to emergency care
  • 24-hour end of life care
  • care for a child’s body after death
  • bereavement support
  • information, support and training for parent carers

Children’s hospices are there for families when they need them most, when the heart-breaking moment comes to say goodbye to their child. Children’s hospices have specialist teams to support a child and their family at end of life, including comfort care, managing pain and symptoms, and spiritual support. Children’s hospices provide space and care to enable families to spend every precious last moment together, however short.

Children’s hospices also offer families time with their child after death, giving them the space to say goodbye and make memories together whilst they grieve. And children’s hospices offer expert bereavement support before, during and after the time when their child dies, for as long as the family need it.

You can find out more about children’s hospices here

Reaching consensus on a child’s end of life care

Everyone involved in caring for a seriously ill child – will have the child’s best interest at heart – families, professionals, hospitals and children’s palliative care teams.

Hopefully early conversations that are open and honest will help families and professionals to fully understand the prognosis for the child and what care options are available, so that they can agree about the best decision for a child’s care – it’s always ideal if parent’s choices about their child’s care can be supported by their doctor and health care team – as long as they are in the child’s best interest. It is important that parents and professionals are supported as much as possible to reach consensus about a child’s best interests, with access to independent mediation if needed.

Sometimes there are disagreements between the care team and the family and it can be helpful to seek independent mediation. Sometimes the care team, the family, or both, will want to seek an external second opinion about the best course of treatment for the child. Ideally families and professionals will reach a point of consensus – that’s what we would want to see happen. But in rare cases, the courts do need to get involved – especially complex when a child cannot speak for themselves – either because they are young or older and lack capacity.

Some useful links on second opinions and mediation

What does withdrawing life-sustaining treatment mean?

Making decisions to withdrawn life-sustaining treatment at the most heart-breaking time is extremely challenging for everyone – it’s agony for families and challenging for teams that have been delivering care to these children. Decisions like this aren’t reached overnight – it is often a decision which is reached over a long period of time, it isn’t reached quickly.

Professionals working with children and young people with life-limiting or life-threatening conditions will tell you that withdrawing any life-sustaining treatment is one of the most difficult areas of their work. That when difficult decisions need to be taken, keeping the focus on doing what is in the best interests of the child, and with full and open discussion with parents and carers is paramount.

Difficult decisions need to be taken, keeping the focus on doing what is in the best interest of the baby, child or young person, and with full and open discussion with parents and carers.

For those children where treatment can merely sustain life, but cannot restore health or confer other benefits, withdrawing treatment but providing good palliative care can be an active and positive experience for the child, family and the professionals around them. It is vital that the child and their parents and carers fully understand that withdrawing treatment does not mean abandoning care, comfort and pain and symptom management, or support for the whole family.

We also know that death soon after withdrawal of treatment is not the only outcome, even when it is anticipated. This unpredictability confirms the need for parallel planning to ensure the ongoing care of the child or young person in cases where they survive. This uncertainty and variability clearly has implications for communication, decision-making and planning at every stage.

Families facing their child’s end of life should be supported to explore and discuss their child’s care options and given the space to make memories with their child. Families should be encouraged and supported to continue their caring role with their child during their death and should be consulted about whether they want to be involved in caring for their baby after death.

It’s vital that families facing their child’s end of life are supported at this distressing time and offered bereavement support before, during and after the time when their child dies.

Support for families caring for a seriously ill child

Together for Short Lives has a family support hub for everyone who cares about a child with a life-limiting or life-threatening condition, including a helpline, free legal support and peer to peer support groups.

If you have questions or are finding it hard to cope, please contact our Helpline free on 0808 8088 100 or chat to us online here.

Or visit our family hub here

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