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Care Planning in Advance

Family looking at baby in a cot

An Advance Care Plan (ACP) is a document that communicates the agreed priorities and goals of care, especially if/when your child’s condition deteriorates. Anyone who plays an important role in the life and health of your child, including your child if appropriate, can be involved in advance care planning. It is specific to the needs of your child and your family and will cover a variety of different circumstances, including slow deterioration, emergencies and potentially life-threatening complications of their illness, and care at the end of their life.

An ACP could help you prepare for difficult moments by planning ahead. It is very hard to make rational and informed decisions during a crisis, so an ACP can help you to consider and decide on certain actions before the situation occurs. Together with your healthcare team (and your child when appropriate), you will discuss and agree upon these actions. It is important that someone explains to you the choices you have in the care your child receives before decisions are made.  The ACP will be regularly reviewed with you and can be adjusted as your child’s needs or your family’s wishes change, even in an emergency. While these documents are often referred to as Advance Care Plans (ACP), they may be called by different names depending on the healthcare team involved.

If your child is approaching the end of their life, an ACP can help ensure their care aligns with your wishes and that things go smoothly. This may include details about where you would like care to happen or it may prevent unnecessary hospital admissions. Planning ahead means you will not need to handle as many practical details at this time, allowing you to focus on being with your child.

An Advance Care Plan is shared with all professionals involved in your child’s care, as well as those who might be contacted in an emergency.  This way, everyone understands your wishes and is aware of what matters most to your child and family.

How will I cope?

It is natural to have lots of questions, concerns and fears about changes or a deterioration in your child’s condition and when your child is approaching the end of their life, and you will need lots of information about what to expect. You may wonder:

  • How will I tell my other children, family and friends?
  • How will we care for our very sick child?
  • What is going to happen?
  • What are the practical steps we need to take?

Don’t be afraid to ask for help. Families have shared that, while it can be extremely difficult, planning ahead for any change, deterioration or emergency, as well as for their child’s end of life, can help them feel more in control. This planning may also create more time for you to make positive memories together.

What will an ACP include?

The team caring for your child will be there to support you and will be able to answer any questions you have. Before you meet the team, you might want to write down any questions and worries you may have.

Here are some questions you might want to discuss:

  • What care options are available and where can it be provided?
  • Is it available 24 hours a day, seven days a week?
  • Who will be there ‘out of hours’ to care for your child?
  • What steps do you want the team to take if your child needs resuscitating or suddenly deteriorates? Will it be possible to withdraw invasive treatments and equipment and chose a more natural approach?
  • Do you have any views on organ and tissue donation? Do you need more information about this? Even if your child has had a long-term illness, it can still be possible to donate tissues such as heart valves and corneas.
  • Who will manage your child’s symptoms and what will that plan look like?
  • Who do you want to be there at the time of your child’s death? Who will look after your other children? Who will call family and friends?
  • Where would you prefer your child to be cared for at the time of death and after death? There are a number of possible options, including taking your child to a special suite at a children’s hospice or taking them home.
  • What kind of ceremony or memorial, if any, would you like? You may want to have a special naming ceremony, an informal celebration or a traditional funeral. You may want to plan more than one or you may not wish to have any.
  • Does your child wish to make a Will? Your child may find it comforting to write a Will, choosing to give their toys or possessions to specific friends or family members.

Think about who else you would like with you at the discussions. It’s always best to have another family member or a friend with you.

Take Your Time. These are big decisions and it’s okay to ask for time to think about your options or to ask for additional meetings with your child’s care team.

Keeping and reviewing the plan

Your care team should work together with you, your child and the rest of your family to develop a written ACP.

Make sure everyone working with your child has a copy of the plan so they can act in accordance with your wishes. It is important the plan is reviewed regularly – you can change your mind about any aspect of the plan at any time.

Keep a list of useful contacts close by

It’s good to keep a list of all the professionals involved in your child’s care. Make sure you are given out-of-hours contact numbers so you have peace of mind, day and night. If you are worried about anything and can’t wait to see your child’s specialist – talk to your GP. In a medical emergency call 999.

Further information

Further information about advance care planning and a template for an Advance Care Plan is available at the Child and Young Person’s Advance Care Plan Collaborative’s website.