Palliative care for babies, children and young people

Life-limiting conditions

– what the future holds

29th September 2016

Being told that your child may not reach adulthood is something you hope will never happen to you, and no-one can be prepared for it. If it does happen, many parents don’t know where to start, emotionally or practically. It may feel very isolating, but you are not alone.

For some parents, finding out that their child has a serious health condition is a gradual realisation as various symptoms become apparent. For others it can be discovered completely out of the blue during a routine health check.

Even when you know your child has a serious health condition, it is often difficult to then accept that this condition might cause them to die in childhood or young adulthood.

All these different factors mean that the way each family deals with the situation will be completely unique, and it’s important for health professionals working with you to respect the individual needs of your family. It’s important they understand that everyone is different. The journey that each family travels will also be unique, but will follow four main stages:

1. Diagnosis or recognition

It is important that you, as parents or carers, are told of your child’s diagnosis in a sensitive way, in private. It is also important that whoever is having the conversation with you ensures that you fully understand what your child’s condition means, and its implications for the future, for the whole family. Make sure you ask them to repeat anything you don’t understand, or to give you written information to clarify what they’ve said or to refer to later. It’s hard to take complicated information in when you’re dealing with the shock of the news.

This is a critical time. It’s a time when your life will be turned around. But making sure that you understand what is going to happen and what support is now available to you will help you come to terms with the changes to your family life. It will also help you plan for the future.

You need to make sure that as well as dealing with the practical aspects of living with a child with a serious health condition, that you, your child and your family come to terms emotionally with the fact that your child may not live the life you had planned for them.

2. Ongoing care and support

Once your child has been diagnosed with a life-limiting or life-threatening condition, it is important that their needs, and those of your whole family, are assessed regularly. A care plan should be drawn up to meet these needs, and this care plan is updated following each assessment.

It’s important that professionals from as many services as possible are present at the assessment meeting, to avoid having to go through different assessments for different services.

A care plan documents all the decisions made in the assessment meeting. These decisions include:

  • the type of care and support that will be provided for your child and family,
  • the frequency of this care and support, and
  • what should happen in different circumstances.

It should be based on your wishes, and be updated regularly. All professionals involved in your child’s care should be familiar with this plan, and have a copy of it to refer to. If your child attends school or college, an Education and Health Care Plan (EHCP) should be in place and reflect the input required from health services to support their continued education.

At this point, you will come into contact with a wide variety of services and professionals which you might not have known exist. It’s important to remember that as parents and carers, you are the experts in your child’s care. You should be encouraged and supported to feel in control and to work in partnership with the care team at every stage.

3. Planning for the future

Thinking about the end of your child’s life is extremely difficult. It requires a lot of emotional strength. However, it is something that you must address and plan for as a family.

A strong message from families who have been through the experience of their child dying is that making choices in advance of your child’s death makes it easier for you and your family later on., It means that when your child does die, 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. It also gives you time to think carefully about big decisions, such as whether you want to explore the possibility of organ donation, or whether you want equipment such as feed tubes and IV lines removed to allow a natural death.

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

You should be supported by your child’s care team to write an end of life plan, in collaboration with them. It should set out all aspects of what you would like to happen at your child’s end of life, and any special wishes you or your child have. For example, if your child is nearing the end of their life whilst in hospital, you may want to take them home or use a local children’s hospice service. It might also be important for you to have religious rituals performed.

Having these things written down in an end of life plan means that any professional caring for your child at the time of their death will know exactly what to do in order to carry out your family’s wishes.

4. Bereavement

No one can anticipate quite how they will feel or react after the death of their child. Most people describe a ‘rollercoaster’ of emotions, ranging from numbness to furious anger, profound sadness to perhaps a certain relief. People find their own ways of coping with the sadness of bereavement.

Some people value talking about their feelings and their child, finding it hard to concentrate on other activities. Others experience difficulty in openly expressing their feelings and prefer, if they can, to immerse themselves in work, hobbies or physical activity.

It can sometimes be difficult for partners to help each other while trying to deal with their own feelings. Relationships often suffer through grief. It is important to try to respect your own instincts, and those of others who are also grieving, about what is right for you and for them as individuals. Understand that people grieve in very different ways.

Trying to help your other children through their grief can be extremely challenging, and talking with them will bring up painful feelings for you. You may feel as if you can’t ‘keep it together’ enough to get through the conversation with them. You may need other family members or friends to help with this. It may be that your other children don’t fully understand what has happened, and it can help to have them talk to a professional – perhaps your GP or a member of staff from your children’s hospice, if appropriate.

49,000 children and young people are living in the UK with health conditions that are life-shortening or life-threatening—and the number is rising. That’s one in every 270 children—the equivalent of one in every school. It’s easy to feel alone and like the only family in the world going through it, but you’re not. Whichever stage you and your family are at, it’s going to be a distressing and confusing time for everyone.

More information on support that is available along your journey is available here.

You can read some questions others have asked here.

Together for Short Lives is the UK charity working to ensure that all children and young people unlikely to reach adulthood, and their families, get the best possible care and support whenever and wherever they need it. They provide information and resources for families on their website and have a free Helpline 0808 8088 100 and email support service. You can add your voice by joining the Family Community.

Useful Links

Child Bereavement UK

Supporting families to rebuild their lives after the death of a child.
www.childbereavementuk.org

My Adult, Still My Child

Information for parents with children aged 16 and over who may not be able to make their own decisions.
www.myadultstillmychild.co.uk

Many families get a real sense of community by engaging with others on social media and joining groups. If you would like to know more about linking up with others who may have similar experience, email info@togetherforshortlives.org.uk.

Image source: Together for Short Lives



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