Palliative care for children
Palliative care aims to help people with serious illnesses feel better. It does not always mean the end of life is approaching.
What is palliative care?
Palliative care is offered to help give the best quality of life when a person has been diagnosed with a life-limiting condition (a condition that may shorten their life). It is supportive care, which prevents, treats or controls the symptoms and side-effects of a disease and its treatment.
It has a holistic approach which aims to treat, not just the medical side, but also the emotional, social, practical and spiritual aspects of a life-limiting condition. It’s also available for the person/people who provide support for the family, as well as the person who is ill.
Although this page has been written with children in mind, the information about what palliative care is, who delivers it and where you can receive it, is also true for adults.
When might my child be given palliative care?
Palliative care can be given from the time of diagnosis, throughout and alongside treatment for the illness, during follow-up and also at the end of life.
Ideally, palliative care should be discussed and offered from diagnosis of a life-limiting condition, such as a brain tumour.
So while palliative care can be part of end of life care, if it’s offered to your child it doesn’t necessarily mean they’re at the end of life.
If your child is receiving palliative care as part of end of life care, visit our terminal diagnosis pages for more information.
Join our community on Facebook
Our closed Facebook group for parents is a great place to connect with other parents affected by a brain tumour and share your experiences.
What does palliative care include?
Serious illnesses, such as brain tumours, can have many effects on your child’s (and your) life. Palliative care can be used to help ease these effects.
Palliative care can help to manage symptoms of your child’s brain tumour and its treatment. For example, if your child has any of the following:
- Trouble sleeping
- Shortness of breath
- Loss of appetite and/or swallowing difficulties
- Difficulty communicating
These can be treated through medication or referral to other healthcare professionals, such as physiotherapists or dietitians.
Caring for your child and dealing with their treatment can bring various practical problems:
- Understanding treatment choices
- Understanding complex medical forms
- Travelling to hospital appointments
- Getting equipment, e.g. specialist wheelchairs
- Effects on your job and your finances
- Insurance questions
- Legal questions
- Moving from one care setting (e.g. hospital) to another (e.g. care at home or in the community).
Your palliative care team can help explain treatments and forms. They can also signpost you to organisations and resources to help you with any other practical issues that may come up.
The team can also help to write a plan of your/your child’s wishes about their care, at this point, as some choices are only available with planning. This is called advance care planning. Talk to your child’s healthcare team about the care choices your child has and about setting up an Advance Care Plan (ACP).
Doing this helps to make sure that everyone knows your/your child’s wishes and things can be put in place for your child’s care to run smoothly.
When your child is diagnosed with a brain tumour, it may cause you, and your child if they’re older, to look for a meaning to their diagnosis or to question your faith or individual philosophies.
Part of palliative care can be to help you or your child explore and understand your feelings and beliefs, to help you move towards acceptance and peace of mind. This can be through palliative care team members or they can refer you to other services that may help, e.g. a counsellor or psychologist.
Who provides palliative care?
Palliative care is a partnership between your child, your family, and the healthcare team. Every palliative care team will be different, but it could include:
- Social workers
- Health play specialists
- Art and music therapists
- Faith leaders
This team will listen to you and help you decide on the care options for your family. They can work with you and your child to make a care plan.
Where would my child get palliative care?
Your child can get palliative care wherever they receive care. This could be in hospital, during clinic visits, in a hospice or at home.
Many people panic when it’s suggested their child goes to a children’s hospice. But hospices don’t just deal with people who are dying.
Hospices are there for families every step of the way from the point of diagnosis. It can be for a short period of time to give you a break (respite). Or your child can come into a hospice as a day patient, where they, and their siblings, can have a chance to interact socially and enjoy leisure facilities.
Many hospices also offer care at home.
How can I get palliative care for my child?
Your child’s healthcare team will refer you. However, you can ask to be referred also.
Our team offers support to children, young people and families affected by a brain tumour diagnosis. We’re here to help with any information you might need, answer your questions, listen and provide support. We can help you develop ways to cope, take control and connect with others who are going through similar experiences.
or call 0808 800 0004, Monday–Friday and ask for the Children and Families Team.
If you’re a young adult aged 16-30 with a brain tumour diagnosis, our Young Adults Service can help you connect with others to feel less alone, and support you with any information you might need.
or call us on 0808 800 0004, Monday-Friday and ask for the Young Adults Team.
Support and Information Services
You can also join our active online community.
If you need someone to talk to or advice on where to get help, our Support and Information team is available by phone, email or live-chat.
Share your experiences and help create change
By taking part in our Improving Brain Tumour Care surveys and sharing your experiences, you can help us improve treatment and care for everyone affected by a brain tumour.