“We are so glad that we got to have Holly at home. For us, it was the best option for everyone – for Martin and I, for Andrew and Delphi, for her grandparents, uncles, aunties, friends but especially and most importantly for Holly. She felt safe and secure surrounded by everyone and everything that she loved.’”
Experience has shown that preparing for your child’s death in advance of it happening can help in the bereavement process. It’s an incredibly hard and difficult time for you and your family and tough to come to terms with what is happening. For you as parents, the grieving process begins at the time of your child’s diagnosis with “Anticipatory Grief” this exists throughout the child illness right up to end of life, death and thereafter (Jaaniste, 2017).
There are several difficult choices you as parents can be faced with towards the end of your child’s life. This section of the website is aimed at helping to make you more aware of what these choices are, the implications of those choices and how to help prepare your family and child at the end of their life.
As parents, you never want to hear that there is anything wrong with your child, much less that they have a life limiting, non-treatable or palliative condition leading to the end of your child’s life.
Your world and dreams for your son or daughter have come crashing down. You have this task of caring for their every need until that journey ends be that in hospital, hospice or at home.
As parents you will be supported in your choice and decision around where you would like to care for your child. Consider all your options carefully and think of what will work best for you and your family. Try where possible to maintain a balance between caring for your child and your families’ daily life. There will be difficult but important decisions to be made. Plans should be discussed in a calm and non- rushed manner in conjunction with the interdisciplinary team. You will feel overwhelmed at times, be reassured that these are normal feelings.
Professionals are there to listen, guide, advise and work in partnership with you and your family. There is help and support available to you wherever you decide to care for your child. Facing the reality of caring for your child at end of life is difficult and it can come suddenly in some cases. Having a plan for the care you want for your child at the end of their lives can be a supportive thing.
If it is your wish to care for your child at home each community team member will endeavour to support and help you to the best of their ability within the resources available. Your G.P, Public Health/District Nurse, Specialist Community Palliative Homecare Team, Clinical Nurse Co-Ordinator, CDNT Team’s and the relevant Voluntary Organisations will support your needs and wishes.
Parents’ wishes will always be at the centre of all decisions made around your child’s care at end of life. You will receive some in home nursing support at home if that is your wish. All necessary and relevant medical supplies will be organised and available for you to take care of your child at home. Never forget as parents you know your child best; you are the expert in their care.
Making special memories and saving mementos are key in helping you cope with this unbearable situation that you must face. It is essential to spend time making and creating memories with the family and other people who are important in your lives.
You may not have expected your son or daughter to survive birth. Some families make beautiful catalogues of their pregnancy. This can help with vivid thoughts and feelings about their unborn child. Many parents bring mementoes boxes with them to hospital preparing to add the final pages to these catalogues. LauraLynn offer a nationwide service to carry out memory making through art.
The point of diagnosis has been heart breaking for you, whether that time was during pregnancy, birth or along your child’s precious life. No parent wants anything to be wrong with their child. Their diagnosis is the beginning of the grief and bereavement process for you as their parents. You and your family are daunted by the huge task ahead, caring for your child with a life limiting condition, beginning a journey that you think is impossible.
Listening to parents we as professionals can support and encourage you to achieve your wishes for your son or daughter. We would suggest that families make the most of the precious time you have with your child taking lots of photos and videos.
Enjoy things like celebrating the small milestones like a weekly or monthly birthday if your child is very young.
If you can create memories like a trip to the beach, woodland walk, a trip to collect their sibling from school, it doesn’t have to be elaborate memory making.
Use of catalogues, photobooks and memory boxes of your little son or daughter, brother or sister, grandson or granddaughter will help. Try as best you can to live the best quality of life with them possible until they die.
When a child is going to die the dreams and hopes for you and your family are so different. It’s a devastating time and you will wonder where the strength will come from to get you through, but you will be proud of how you cared for your child with the help of special memories. Creative artwork, books or memory boxes may help with reminding you of the journey of living with your child.
Research on memory boxes and photos are considered very helpful to bereaved parents and families. Some studies suggest that memory boxes may be helpful to healthcare professionals too as they are seen as a supportive addition to bereavement programs to both families and healthcare teams. We know from research that preparedness and quality end of life care can greatly influence how you as parents cope following the loss of your child (Morris et al, 2019)
Sensitive decision making is the core to achieving positive choices for both your child and family.
There have been many changes in Children’s Palliative Care in recent years. Healthcare professionals are committed to improving quality of life of families and their children. It is a privilege for them to share in your journey. A comprehensive and co-ordinated support approach is fundamental to your child and family. It is essential that your family is at the centre of all decisions at end-of-life care be that at home, in hospital or hospice. The overarching aim in providing end of life care is that all children receive high quality care and a dignified death.
Sharon Thompson, mother to Victoria, talks about how she made memories with her child here: Making Memories
References
Shear, K, (2015) Complicated Grief and its Treatment. A Handout for Patients, Friends and Family Members. Columbia Center for Complicated Grief, New York
Wijngaards-de Meij, L, Stroebe, M, Stroebe, W, Schut, H, Van den Bout, J, Van Der Heijden, P, & Dijkstra, I. (2008) The Impact of circumstances surrounding the death of child on parents’ grief. Death Studies, 32, pp, 237-252.
[Revised by Joanne Doyle 2024, Liaison Nurse Manager Jack and Jill Children’s Foundation RGN, RCN, MSc CYPCC]
