Legacy projects: leaving something for your children

This page is for parents with advanced cancer, and the people helping them, who want to leave something for their children. It covers simple ways to start and how children can take part too.

There is no clinical definition. In practice a legacy project is anything a parent makes so that their children have a piece of them later. For example:

• A letter or a recording
• A photo album with the stories written under the pictures
• A set of birthday cards
• A video of them explaining how they make the thing only they can make

The National Cancer Institute (NCI) does not use the phrase. What its caregiving guidance does mention, in the context of children connecting with a seriously ill relative, is offering other ways to show they care, such as letters, artwork, or voicemail messages and songs. That is the same medium pointed in the other direction, and NCI says that when children cannot or do not want to visit, there are other ways of showing they care.

The most common reason people never start is a sense that whatever they produce will not be good enough. A parent facing the end of their life is meant to hand over something wise, and nobody feels wise while nauseated in an armchair.

NCI's guidance for talking with a dying loved one contains a line worth taking as permission: the most important thing is not what you say, but that you are showing you care.

A short, awkward, unmistakably yours message will be treasured. A polished one that never gets made will not.

If the blank page is the obstacle, the way past it is usually to stop trying to write A Letter and instead answer specific questions.

NCI advises caregivers to get a sense of how someone feels about certain issues while they can still tell you. That advice is aimed at care decisions, but the same principle underlies a legacy project: what a child will want later is not general wisdom, it is your particular opinions, memories and turns of phrase.

Stories about your own childhood. Why you chose the work you did. What you thought the first time you met their other parent. What you were like at their age. What you find funny. Those are things nobody else can supply.

Energy near the end of life is limited and unpredictable, and an ambitious project can become one more thing that fails.

Short pieces work better. One recording. One card. One page. A voice note of a few minutes is an easier thing to complete on a bad day than a memoir, and it carries something writing does not — the sound of the person.

If someone else is helping, their job is to lower the barrier: hold the phone, do the typing, ask the questions. NCI's model of children contributing letters and artwork implies exactly this kind of shared, low-effort making rather than a solo production.

Legacy is often framed as one-directional, from the dying parent outward. NCI's guidance describes it the other way around as well: children writing letters, doing artwork or leaving voicemail messages when they cannot or do not want to visit.

That has real value for a child who feels helpless. Having something to give is a role, and it can be done from home, in their own time, without having to perform in a hospital room.

NCI also gives examples of preparing younger children for a visit by explaining what they will see, such as that the person may be in bed and have little energy.

A legacy project is not a substitute for bereavement support, and it will not spare anyone the grief. NCI has separate guidance covering how children grieve and what helps them.

What these things do is give a child something concrete to hold in ten years, when their memory of a voice has faded and the questions they want to ask have changed. That is a narrow benefit and a real one, and it is available to any parent with a phone and a few minutes.

• Plans and Decisions for End-of-Life Care as a Cancer Caregiver - National Cancer Institute