Getting to the right place for the final time

Deirdre and Emily both care for terminally-ill children. They tell us why it is so important for their final wishes to be heard.

Dr Deirdre O'Shea and Dr Emily Harrop

Deirdre: I accept that a proportion of children in my care will die, but I do not accept families being left to say goodbye in a place that is not of their choosing.

Parents are often surprised that death doesn't have to be in the intensive or critical care area. Once they have grappled with the fact that death is imminent they often seek to be in a place where they can cherish the life that is left.

Timing a child's death is incredibly difficult. And the skills to transport a dying child to their designated place of care - a hospice or ward closer to home - are challenging.

It is not impossible that in moving a dying child they may die en-route. Parents have to be told what to expect so that they are prepared.

Once the child has been transferred, often the team will stay to settle the child in.  It is now that the value of the location becomes apparent.

We assist a number families every year. Helping them to reach the preferred place of death for their child. When we revisit those transfers the team; ambulance driver, nurse and doctors alike have all felt deeply touched to have enabled that child's death to be a more positive experience.

It is my opinion that far too few families are offered this essential service.

Emily: Offering families a realistic and meaningful choice of where they can spend their final moment together is very important.

I have seen first-hand what a relief it can be to reach a preferred place of care, when a child is close to end of life.

Babies will sometimes have been cared for in incubators, with only minimal contact possible. Leaving hospital and enjoying a cuddle can make a huge difference. The parents can find it incredibly meaningful for their baby to have 'existed' outside of a neonatal unit, either at home or in hospice.

Sometimes, when the child survives longer than we'd estimated, families are given chance to spend time together and create more memories.

We support them by ensuring that any distressing symptoms are quickly addressed. This allows both a good quality of life and a dignified end to life.

The NICE guidance for 'End of life care for infants, children and young people' advocates support for the whole family at every stage of their journey together. It takes in to account the needs of parents, siblings and grandparents. And it recognises that the final moments a family spends together can be a central component in the memories they are left with.

We must ensure that we do all we can to get families to the final resting place they choose.

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