Ways to Live Forever (2010): A Child Asks Why

Sam is a fact-obsessed boy in the north-east of England. He is at home rather than in hospital, because his leukaemia is no longer being treated with any expectation of cure.

Encouraged by his home tutor, he keeps a notebook and a video diary, and fills them with lists, drawings and blunt questions about death that the adults around him keep deflecting. With his friend Felix, another boy from the ward, he draws up a list of things to do: see a horror film, ride in an airship, break a world record, kiss a girl.

At home his father cannot bring himself to name what is happening. His mother holds everything together. His sister resents being the one nobody is worried about.

Spoilers below. This page says what happens to Felix, and what Sam leaves behind at the end of Ways to Live Forever.

The film's central claim is that a child who is told the truth copes better than one who is protected from it. That is not just a screenwriter's opinion. It is close to what NCI tells parents.

NCI's guidance is direct: children of all ages need clear, simple information that makes sense to them. The reason it gives is the one Sam demonstrates in every scene. Children often use their imaginations to make up answers to unanswered questions, and may fear the worst. Answering honestly and keeping the conversation going helps.

There is also a cost to the alternative that NCI states plainly. Telling untruths can cause a child to distrust you, or the people on their health care team. Sam's father spends the film unable to say the word, and Sam notices, and the notebook is partly what he uses instead.

None of this means telling a child everything at once. NCI is specific about that too: it can be hard for a child to process too many details, or information given too far in advance, so start with small amounts they can take in.

Two of the questions Sam asks are the two every parent dreads, and NCI has worked answers for both.

Can I catch it, or give it to someone? NCI tells parents to explain that cancer is not contagious. It is not something a child catches from someone else or passes on.

Is it my fault? Some children think they did something wrong to cause it. NCI's suggested words are worth keeping close: I don't know. Not even doctors know exactly why one child gets cancer and another doesn't. We do know that you didn't do anything wrong, you didn't catch it from someone, and it's not contagious.

And when a child asks whether they are going to get better, NCI's suggested answer does not promise anything it cannot. It names the illness as serious, says that the treatments have helped other children, and offers to go and ask the doctor and nurse together.

That is the register the film works in. Talking to children about cancer goes through more of it. NCI also notes that children react in very different ways — some worry, some go quiet, some become defiant, some slip back into younger behaviour — and that all of those are normal responses to their life changing.

Sam is at home because treatment is no longer aimed at cure. The film does not explain what that means practically, and the gap is worth filling.

NCI describes palliative care as care meant to improve quality of life in a serious illness, which can be given with or without treatment aimed at cure. Anyone can receive it, regardless of age or stage of disease. It covers pain, sickness, appetite, breathlessness and sleep. It covers the emotional and spiritual side. And it covers the household, including carers who NCI says are commonly overwhelmed.

So "nothing more can be done" is almost never accurate. What changes is the aim. Palliative care sets out what continues.

Worth knowing alongside it: NCI notes that leukaemia is the most common cancer in children younger than 15. It is also a broad term rather than one disease, and the film never narrows it. Acute and chronic leukemias covers why that word matters. If you see a precise diagnosis attached to this film, check where it came from.

The film's quietest good instinct is Sam's sister, who is furious at being the child no one is asking about.

NCI treats that as part of the care rather than a side issue. Its suggestions are small and specific. Set aside time every day for your other children, even a few minutes, and ask how they are, even when you have no solution. Keep them informed about what to expect during treatment. Find ways to include them in hospital visits, or to stay in contact by video and phone if you are far from home. And when people offer to help, be concrete about what would actually help — cooking, shopping, driving the siblings to their activities.

The friendship between Sam and Felix is the other thing the film gets right. It is a private world with its own jokes and hierarchy, rather than the usual solemn depiction. Felix dies first, which is what forces Sam to look at the shape of his own ending.

Where the film takes liberties is tone. The list is completed with improbable smoothness, the airship most obviously. Sam's death is gentle, well lit and timed to the emotional structure. Treatment barely features at all: this is a film about a boy who happens to be ill, which is both its charm and its evasion.

Cancer Explained is free to read and carries no advertising. If this page gave a parent one sentence they can actually say to a frightened child, that is enough. Support our work.

Ways to Live Forever is a gentle film about a hard subject, and its central claim is the right one. Children do better with straight answers, and NCI says so in almost the same words. Just do not take the airship as a model for how a family's last months actually go.

• NCI — Talking with Your Child about Cancer
• NCI — Palliative Care in Cancer
• NCI — Leukemia, Patient Version

This page discusses Ways to Live Forever for education. It is not medical advice, and nothing here is a judgement of anyone's real medical care. Spotted an error? Please email [email protected].