Planning Ahead

Thinking about your child dying is always daunting to families who love a child with a life limiting condition with all their heart.

Some families ‘just can’t go there’, but in much the same way that you may have thought about making a plan for when your baby was going to be born, parents and (if appropriate) the child or adolescent) should take some time to talk about what the future may hold. You can begin to think about what you would prefer when the time comes to say goodbye. We don’t get a second chance to get it right.

At the time of diagnosing a child with a life limiting illness, (which often means he or she will probably die before they reach adulthood), a family’s world is blown apart. It really is the unthinkable. Many families focus on the here and now and that’s understandable. 

However, research in this area tells us that before we ever reach this time it is best to consider (in a calm and thoughtful manner) what a child/ adolescent, parent or close family would prefer for their child/ adolescent as their journey comes to an end.

Some issues to consider are:

• Where would your child like to be or where are they (or you) usually the happiest?
• Where do you feel most confident or supported to care for your child (home, hospital or hospice)?
• Who will you call on to help you with physical care requirements (friends, family, local nurses)
• What medical support is available to you in your chosen place? (GP, PHN, home respite nurses, children’s hospice teams, regional community palliative care teams)
• What spiritual and cultural wishes would the child/ adolescent (or you) wish? (Music, prayers, poems, traditions)
• What equipment will be required? (Downstairs bed, oxygen, different or increased special medicines)
• What people will you want around you, who can help with chores and how will you communicate your needs as a family? (visitors, privacy, practical help, other sibling childcare, condition updates, management of social media, funeral plans)

This thinking ahead is often called Advanced Care Planning or a Wishes Document.  It’s about recording the advanced wishes of child. It is also about planning and preparing for the future care of your child and preparing for the end of their life and beyond. Sometimes, it enables the child and the family to make decisions in advance of them actually happening. This means that when the child approaches the end of their life the family are able to spend that precious time together free from having to make decisions around issues such as where to care for your child, pain management and resuscitation. 

It is important to say that sometimes plans (or wishes) have to change suddenly but research tells us that if parents have considered all possible eventualities and they know what is happening, saying that final farewell is a little easier perhaps….

When making an Advanced Care Plan or creating a Wishes Document try and seek the insight and guidance of health care professionals. There is no perfect time to think about your requirements and not all the questions have to be answered immediately. You can make changes to the plan if you need to. 

What is important is that you begin to talk together as a family about the needs and wishes of your child or adolescent for this last part of their life so the time can be as special (in a strange but sad way) as the wonderful day he or she was born.

The author would like to acknowledge and thank the courageous and inspiring families who recently participated in her recent Doctoral study.

 ‘’Ar dheis Dé go raibh a anam’’