Palliative care – what it really means

Palliative care is often confused with end of life care. Although they often go hand in hand, they are not the same. Palliative care is the total care of your child's mind, body and spirit. It can benefit the whole family, giving you and your other children support. It puts your child's needs at the front of their care and should be seen as a positive approach for you and your child.

Palliative care, explained

Many people think palliative care and end of life care are one and the same. But this is not quite true. Palliative care is the total approach to care that your child will receive to give them the best quality of life. It’s often started when a cure is no longer possible, as part of end of life care, but can also be given in the earlier stages of an illness.

1. It does not make your child die sooner

Part of palliative care can be deciding to stop certain treatments. However, it is not designed to hasten dying. It can help to manage your child’s symptoms for weeks, months or even years until this point.

2. Palliative care is an approach, rather than a type of treatment

It is a holistic approach that deals with the “whole” person. That means it will involve a combination of care that looks after all the aspects of your child’s wellbeing. This includes their physical, emotional, social and spiritual needs.

3. It can be given at home or in a hospice (as well as in hospital)

Trained palliative care specialists do exist but palliative care is also regularly given by people you see day-to-day, like GPs and nurses.

4. It is designed to help you and your close family as well

Some facilities that provide palliative care will also offer complementary therapies, play therapies, counselling, spiritual support and practical advice for family and friends too.

5. It does not mean that you or your medical team have ‘given up’

This kind of care will be given with compassion to ensure that your child can live their life as fully as possible, even when there are no other curative options left.

Where can my child receive palliative care?

Many people assume that their child will be cared for in the hospital but this doesn’t have to be the case. Home, hospices, or a combination can offer peaceful environments where you should have all the support you need to make sure your child is well cared for and comfortable. It’s up to you and your child to decide what’s best for you as a family.

You or your child might have a strong preference. Or you might worry about making the ‘right choice’. Read the information below and discuss your views together as a family – but just be mindful that these choices might change as your child’s health progresses.

At home

Home can be a comforting place for everyone. Here, your child will be in familiar surroundings with relatives, pets, possessions and toys close by. If you have friends and family nearby, their support can help ease the pressure if you or your other children need a break.

You might feel uneasy about delivering palliative care but professionals will be in regular contact, visiting often, and can provide support when it’s needed. Some hospices also provide a home service, although this is not yet available throughout the UK. Check with your local hospice what services are available to you.

Managing symptoms at home is a free booklet by CCLG that gives information about common symptoms, their causes, treatments and suggestions for simple things that you can do at home to help your child. This covers all possibilities to make sure you also ask your child’s doctor which symptoms to expect and how they can be managed.

We had a Macmillan nurse who led a team of nurses and health care assistants that visited daily whilst Hannah was at home to assist with her care and medication.

Simon, Hannah's Dad

In a hospice

Hospices provide palliative and end of life care for children and young people. They work in close partnership with other care professionals and provide holistic care to your family – that is, they look after your child’s emotional, social and spiritual needs too, as well as those of siblings and parents or carers.

Many provide a range of services including 24-hour care, emergency care, short breaks, practical advice, specialist equipment, complementary therapies like massage, and bereavement support. Staff will be on hand to guide you every step of the way and will be led by your needs, giving you space or support as you need.

Hospices are very positive places that aim to fill children’s lives with play and fun. You can all spend time together without having to worry about home chores like cleaning or washing, as it’s all taken care of.

They can sometimes support you in your own home so it’s worth asking, if this is something you’d prefer.

Hospices can be a great source of help at any point while your child is having palliative care.

It’s often thought that they should be accessed towards the end of life but connecting with one as early as possible could open up support you didn’t know was available. This can include counselling and bereavement support for the family. 

In hospital

Your child may need to stay in hospital, or be taken back in to help manage their symptoms. Hospitals are well kitted out for attending to your child’s medical needs but they may not be as well equipped to provide the emotional and spiritual care that you need as a family.

It’s also more difficult to adapt a hospital environment to you and your child’s needs: noise, smells, food, music, personal belongings, having pets there, and space to stay together as a family, might be out of your control. Siblings might also need somewhere to ‘escape’ to if they become overwhelmed, which can be difficult in a hospital environment.

That being said, many parents will have very positive experiences in hospital – it all depends on where you are and the facilities available to you. You can be sure that your child will receive all the medical care they need and will be made comfortable each step of the way, as far as possible.

More about palliative care

You might also want to look at

How do I support myself?

How to care for yourself when you face losing your child.

How do I tell my child that they are dying?

Advice for talking to your child about dying, in a way that's right for you – and them.

Do I carry on with everyday life or make special times?

Finding a balance between carrying on with everyday life and making special memories.