Together for Short Lives
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End of life care

Thinking about the end of your child’s life is extremely difficult. A strong message we’ve heard from families over the years is that if you make choices in advance of your child’s death, when your child’s final days to come, you can concentrate on supporting each other and dealing emotionally with the situation, rather than having to think about practicalities and make important decisions at this time.

Planning ahead also means that you can explore all the options, and find out exactly what is possible, so you can make informed choices.

Here’s a checklist of what you should expect at this stage:

  • Professionals should be open and honest when the approach to end of life is recognised
  • Joint planning should take place as soon as possible with your family and the care team and a written end of life care plan should be agreed
  • Reviews of the care plan should occur to take account of changes
  • 24 hour access to pain and symptom control should be available, including access to medication and suitably qualified and experienced practitioners
  • Emotional and spiritual support should be provided for you and your family
  • Support should be provided for your child and family in their choices regarding end of life

Below we’ve provided some information about some common questions parents ask us and we have more information on end-of-life care available in our downloadable family guide to caring for your child at the end of life.

Frequently asked questions

What is end of life care?

The end of life phase begins when a judgement is made that no more treatment is possible, and that a child will die soon.

End of life care helps children who are no longer receiving curative treatment to live as well as possible until they die. It focuses on preparing for death and managing the end stage of a terminal medical condition. This includes care during and around the time of death, and immediately afterwards. It enables the supportive and palliative care needs of both the child and the family to be identified and met throughout the last phase of life. It includes management of pain and other symptoms and provision of psychological, social, spiritual and practical support and support for the family into bereavement.

An end of life care plan is a document that outlines you and your child’s wishes for their end of life care and death.

Together for Short Lives has also produced a free guide to critical care choices for parents.

My child has a list of special things they would like to do before they die - how can I make these happen?

As your child starts thinking about the end of their life, they might come up with a list of things they want to experience, or see before they die. They might want to meet someone famous, go to Disney World, swim with dolphins, drive a train, or be a zookeeper for a day. They might just want something simpler, like to go to their favourite restaurant for dinner, get an Xbox, watch their favourite football team play, fly in a helicopter, or be a pop star for a day and record a CD.

It’s a nice idea to sit down with your child and talk about the things they might want to do; or things you might want to do together as a family.  These experiences will not only be great fun, but will create some lasting memories for you all to hold on to forever.

Some of these you will be able to organise yourself, but some may be too complicated to organise, and others too expensive. There are several charities set up to help organise and fund special wishes for children with life-limiting or life-threatening conditions and their details can be found on our Grants and Wishes Factsheet.

I want my daughter to die at home in her own bed. Is this possible?

In most cases, it should be possible for your child to be brought home from the hospital to die. It is important however, that if this is something you think you want to do, to talk to your child’s care team well in advance so that they can plan and prepare for this. It may be that they need to get special equipment to your house before your child is brought home, or that certain staff need to be made available.

There are a lot of options available to you at the end of your child’s life, so it’s worth thinking about and planning in advance for this as much as possible to try and make sure all your choices are catered for.

Talk to your care team to explore options for your child’s end of life, including whether you would like this to happen at hospital, in a children’s hospice or at home.

I’m worried that no-one in the hospital will know about the rituals of my religion when it comes to my child’s end of life. It’s very important to our family that these happen.

Different cultures often have specific attitudes towards illness and death, and may have different practices according to the age or sex of the person being cared for. This cultural diversity leads to many varying beliefs about medical treatment, and the sort of care a child should receive.

Professionals will often be aware of different cultural attitudes, and should be able to help accommodate your wishes. Sometimes, however, professionals may not know about certain cultural practices, but they should be open to learning about your culture and how this has an impact on the way you would like your child to be cared for. Make sure you talk to someone in your child’s care team to help them understand your culture, and exactly what you would like to happen.

If English is not your first language, and you need support to help you articulate your cultural values or to help clarify your wishes, an interpreter should be made available to you if you ask a member of your child’s care team.

You could also ask a community leader to come talk to the professionals looking after your child, to help explain your cultural background and how this affects your wishes for your child’s care.

I’m worried I won’t have enough money to have a proper funeral for my son when he eventually dies. Is there any help we can get with this?

Funerals can end up costing a great deal. When older people die, they often have savings that will be able to contribute to the cost. When children die, there generally aren’t any savings for this, particularly when a child deteriorates quickly.

It’s only natural to want a funeral or other service to be right for your child, and you don’t want to have to compromise in any way. Costs will include funeral director fees, cremation/burial fees, flowers, cars, refreshments, and more.

There is help out there if you think you can’t afford it.

If you are receiving certain benefits, you may be eligible for a funeral payment to cover burial or cremation fees and up to £700 to help with other costs.

The Natural Death Centre has information on keeping funeral costs down.

The Co-operative funeralcare will waive costs for the funeral of a baby or child (not including flowers, cars, refreshments etc.) and most independent funeral directors will do the same.

If you live in England or Wales and don’t qualify for support through the Family Fund, an on-line referral from your professional to the Child Funeral Charity may provide you with financial assistance and advice on funeral arrangements.

Because my daughter has a serious health condition, does that mean that she can’t register for organ donation?

If your child has had a long-term illness, it may not be possible to consider major organ donation, but it could well be appropriate to discuss donation of tissues, such as heart valves or corneas (part of the eye).

You should speak to a member of your child’s care team such as GP, community nurse or health visitor if you think you might be interested in exploring donation possibilities. This should be done as soon as you start considering it, as plans will need to be made in advance to ensure the donation happens smoothly.

If your child is in hospital, especially in a high dependency unit (HDU) or intensive therapy unit (ITU) it may be that a transplant co-ordinator or other specialist member of staff may approach you to discuss you or your child’s views on organ donation.

Remember it is your choice completely, and you should not feel pressurised or rushed into thinking about organ donation if you don’t want to.