How our nurses help young people talk about dying
Teenage Cancer Trust Clinical Liaison Nurse Lorraine spoke to us about the crucial work nurses like her do to ensure the best possible care for young people with cancer, including those who are coming to the end of their life.
Before you read this: Thinking about death and dying can be really difficult – lots of people prefer not to focus on it, and that’s fine. If you’re not sure it’ll help you to read about these topics, it might be a good idea to go to a different page instead. You can come back to this page at any time you like.
Talking about things like how someone wants to spend their final months, where they want to die and plans for their possessions or funeral is a difficult, but important process. It isn’t easy to think about, let alone talk about openly, so it’s natural that many young people struggle to start these conversations. Lorraine explained to us how clinical nurses like her, create the level of trust and the kind of environment where young people who will die from their cancer feel able to communicate their thoughts, feelings and wishes during the final stages of their lives.
Getting to know each individual
To begin with, it’s important for there to be trust and comfort. Teenage Cancer Trust staff aim to do this by gaining a profound understanding of young people they work with. Lorraine says: “It’s really important for me to get to know them and work out what matters to them and what I can help with. Building their trust is essential. When talking to young people with non-curative cancer, having built that relationship and knowing them really well helps me decide how to approach it. Young people will take the news differently, so I take an individual approach”.
As for beginning to talk about dying, Lorraine explains how she goes about opening the sensitive discussions around end of life care, avoiding rushing anyone into such talks before they’re ready. “Sometimes I have to test out the water to see if they are open to having conversations. I start the conversations very gently and back off if they’re not ready to chat yet”.
Helping young people plan for the time they have left
For many of those who are ready to talk, the next steps may involve planning things they want to do before they die. Lorraine helps young people set realistic expectations while reassuring people who feel especially vulnerable that there’s no added risk to what they are doing.
“Some are a bit nervous to plan things, but I explain that doing things doesn’t mean that they will die any quicker and that they should continue to live life. Sometimes I talk to them about all of the things that they want to do and then help them decide what they can actually do. Often, they want to go on a dream holiday abroad, but that’s not always realistic for them. I try not to take the wish away from them, but I help them consider how risky some things may be”.
Lorraine adds “I had one young lady plan her wedding, even though she knew she wouldn’t make it to that stage. I think it helped her and her mother as they got to do all of the normal mother and daughter activities like choosing the flowers and the dress. The wedding flowers were used on her coffin and the mum got the wedding dress changed into pillowcases”.
Young people may also talk to their nurses about funeral plans. Once again, Lorraine highlights the importance of treating everyone differently and in line with their personalities. There’s a wide range in the control young people want over the planning process. “Some young people have a lot of conversations with their family about their funerals and really surprise me with how much they do without my support. Others don’t want to think about their funerals and don’t want to believe it’s happening, so leave it in the hands of their relative”.
“One young person who I worked with let his mum do all of the planning as he trusted her to get it right. The young person wasn’t religious, but his mother was, and he knew that it would be important to her to have the religious involvement. I knew that I didn’t need to get involved and that the planning would be precious to the mum. The service was lovely, and she combined her faith with his passions. I told her afterwards that it was an honour that he left the planning to her because it showed that he trusted her”.
Exploring where a young person wants to die
Another role Lorraine might play, is being part of the decision-making process when young people dying of cancer think about where they want to be when they die. “It’s often me who has the conversations with a young person or their family as to where they want to spend their final moments. Sometimes I’ll have that conversation with a young person and sometimes with their family. Sometimes the plans don’t work out, but the final moments can still be ok for the family. One young person wanted to be on the oncology ward or a hospice but had been on a Covid ward and couldn’t be moved. It’s not where the family wanted her to be, but the staff were amazing and let partners in and let her dog in, so it all went perfectly”.
“Sometimes we need to talk to a young person about whether it’s best for them to be at home. It leaves a lot of responsibility on the parents or partners, and they also have the legacy of them dying in the house”.
How your support helps
Alongside helping young people through treatment and readjusting to life after cancer, helping young people through the final months of their lives is of the most challenging but important responsibilities our nurses undertake. By donating to Teenage Cancer Trust, you’ll be helping nurses like Lorraine give young people the best possible care and support as they make the choices which will shape the final stages of their lives.