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Delivering end of life care

Achieving a good death is a primary outcome of palliative care, and is only achieved with careful thought and planning for the final stages of life.

Many professionals who work with children and young people with life-limiting conditions would rather not contemplate the death of that child or young person and in doing so may miss the opportunity to prepare both the child or young person and the family for the death.

Very many will not experience a terminal stage of their illness and may die suddenly. It is therefore incumbent upon professionals to be pro-active in planning for the death of a child or young person with a life-limiting condition.

This requires timely and honest discussions with parents, and as appropriate the child or young person themselves. Making such decisions takes time; time to allow parents and the child to absorb the information, time to question and ultimately time to decide.

To capture the process of this decision making, Tŷ Hafan devised its own documentation and end of life guidance in 2006. It has been used to facilitate a number of discussions and to plan good deaths for a number of children and young people regardless of their eventual place of death.

Not all cognitively aware children and young people wish to discuss this issue, preferring to leave such decisions to their parents, but it is vital that they are given the choice to do so. A number of young people have been particularly interested in discussing their funeral arrangements and although from a legal perspective a will cannot be made by a young person under 18, it is often important that possessions are bequeathed to family and friends so the young person feels they will not be forgotten.

End of life care is not only concerned with the withholding or withdrawing of treatment, it also considers the environment in which the child or young person is to spend his/her final days of life.
It considers the needs of the family to still be a part of the process and not to be anxious about participating in all aspects of care or usual family life such as listening to music, watching the TV, having stories read or just having a family cuddle. Tŷ Hafan considers the child or young person’s quality of life right up until death, still creating special memories for the family to remember.

The end of life documentation developed by Tŷ Hafan has also informed the development of Advanced Care Plans by a number of NHS trusts in Wales. Whilst Advanced Care Plans clearly indicate choices about treatment options, it is not within the scope of such documents to consider the environment or funeral planning.

Tŷ Hafan clearly sees the process as extending beyond the death of the child or young person so it is also the family who experience positive memories of the most difficult time of their lives.