How does Teenage Cancer Trust help patients with incurable cancer?

Incurable cancer and dialogues about dying

Claire: The roles of our Youth Support Coordinator and TYA Specialist nurses are absolutely vital to young people who have incurable cancer. They work hard to build relationships with the young people and to build up their trust. This makes it feel more comfortable for them to have those conversations.

We try to normalise having conversations about dying and help facilitate conversations between young people and their families. Sometimes we are able to have that conversation with the young person first, which might then open them up to talking to their family.

Amber-Jay: Some young people understandably don’t want to talk about their diagnosis or prognosis, and some are more open to talking about it, and this can change quickly or over time, or sometimes not at all. One young person I supported didn’t talk with me very much about their diagnosis during their treatment, and so I was surprised that they were as open as they were about their wishes, funeral plans, and creating keepsakes to leave behind for their family when they were in end of life.

Most of our work is bespoke and we work towards the young person’s needs, and let the young person have the conversations in their own time. They’re facing so much uncertainty and feel like a lot of things are outside of their control, but this is one thing we can give them control over. If they do bring up their worries or wishes around dying, it is important to create a space for them to open up more if they want to and for them to lead the conversation, rather than going in with a checklist of things to ask. I’ve also found that offering or doing activities has been a really useful way to open up conversations in the past, a lot can come from just sitting and doing an activity with someone.

Supporting young people and their families

Claire: We try to normalise having conversations about dying and help facilitate conversations between young people and their families. Sometimes we’re able to have that conversation with the young person first, which might then open them up to talking to their family.

I worked with a young person who knew that she wouldn’t make Christmas, she put a lot of time and thought into presents and notes for her family and friends.

We also go to funerals if the family ask us to. The support for the family carries on after the young person has died.

Amber-Jay: Sometimes we will go to a young person’s home if it is possible. There we will provide emotional and practical support for them and their family, and sometimes all I’ve been asked to do is to bring takeaways or sweets with me. Wishes do not always have to be big; it can be the smaller things that make a big difference, especially towards the end when they may not be well enough to do as much.

Before, I’ve found it can be helpful to offer spaces for all the family and supporters as well as the young person to talk about how they are feeling and their worries. It can help to start a conversation with individuals, so they can have the conversation with each other.

We have a psychology team who we can refer to who can offer more specialised support around managing uncertainty, and to help young people and their supporters start or navigate these conversations.

We have a bereavement walking group for parents. We have some parents whose children died years before, and some who lost their children only months ago. The different stages between the parents can be invaluable to all that end up coming along as they can all share their different experiences and perspectives. I always try and ask them to share their favourite or funniest story of their child, so they don’t always feel they have to relive all their diagnosis pathway or treatment.

We want to set up a sibling bereavement group. We can do home visits to provide emotional support to the siblings and do things like provide journals and stationery, so they can write about how they are feeling or write letters to their siblings of things they wish or would like to say.

We can also support young people with their families at other hospitals if needed. A Clinical Nurse Specialist and I went to another hospital in Bristol and spent the whole day with a young person there before they were transferred to a hospice. We helped them write a will and took each member of the family off to somewhere quiet to give them space to talk about their worries and try to process all that was happening, and even had conversations exploring ways to tell the children in the family about what was happening. We tried to support with any wishes that were possible, one of which was to arrange for their dog to come in and something we were able to do.

We have also been able to support planning marriages and getting grants for things like flowers and dresses. Another young person had a baptism with their sibling.

Peer to peer and other forms of support

Amber-Jay: It is okay for a young person to not to want to talk about dying or want to know a ‘timeline’; they have almost certainly thought about it and are most likely very aware of what is going on.

Other young people only really talk to their Clinical Nurse Specialist or consultant about their prognosis, and I become more of a ‘safe space’ where we chat about trivial things, do activities, and chat about all sorts, to take their mind off things. I also have a tuck shop trolley that I take around the unit that is very well known!

We can also help them to do activities or wishes if they’re well enough and look at creating keepsakes. We work with a charity which makes glass hearts with the young person’s handwriting engraved on them. They can write a short message and sometimes, even if they haven’t spoken about it, you can tell from what they’ve written that they are leaving the message behind for their family in case they die.

We can also support with other keepsakes like fingerprint jewellery. I have had patients do them in the past with their siblings too, so their parents could have all their prints in one place, and this is treasured, and absolutely invaluable to them. These keepsakes have offered comfort to the young people too, knowing their families have something of them to keep forever.

We are looking to create boxes which we can keep at the hospital and give to young people and their families as and when they are needed, which will have some jewellery making keep sakes in there and other information that other young people have found useful in the past, like ‘My wishes app’.

The website has different sections that can help to organise what you may need to think about before your death. It includes will writing, a ‘bucket list’ section, as well as a section for digital legacy, and a place to leave messages/ videos if wanted. The plan is to also to include other resources, keepsakes and memory making, and information books to support family, siblings, partners on how they may be feeling and support available to them.

We offer peer support for all patients, and whilst it’s not specifically for patients with incurable cancer, patients at all points of their diagnosis and treatment can come if they are well enough, it is a chance for young people to meet others in the same situation as them. We cannot always understand everything that they are going through and there will be so much nuance that we don’t understand, so it can be easier to chat to someone else who is in their position.

That way, they don’t have to explain everything like they may feel they have to, to others, which can become very tiring. We also encourage young people to bring someone along to the events if this helps them to attend and do events specifically for supporters to meet other supporters for the same purpose.