END OF LIFE CARE

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 as there will be difficult but important decisions to be made. 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 child. 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 positive and 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. The G.P, Public Health/District Nurse, Homecare Team, Outreach Nurse and the relevant Voluntary Organisations will support your needs and wishes, which should always be at the centre of all decisions made around your child’s care at end of life. Hopefully you will receive some in home nursing support if that is you 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 mementoes 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.

The point of diagnosis has been heart breaking for you, whether that time was during pregnancy, birth or along your child precious life. No parent wants anything to be wrong with their child. Their diagnosis is the beginning of the grief 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 you and encourage you to achieve your wishes for your child. We would suggest that families use catalogues, photobook’s and memory boxes of their little son or daughter, brother or sister, grandson or granddaughter. It will help you to support them to live the best quality of life possible until they die.

When a child is going to die the dreams and hopes for you and your family are so different. After bereavement as parents you will be proud of how you cared for your child with the help of special memories. Creative books or memory boxes may help with reminding you of the journey of living with your child rather than waiting for them to die.

The research on memory boxes and catalogues suggests that they are considered very helpful to bereaved parents and families. Some studies suggest that memory boxes may be helpful to healthcare professionals as they are seen as a supportive addition to bereavement programs to both families and healthcare teams. 

Sensitive decision making is the basis to achieve effective and positive choices for both the child and family as there has been many changes in children’s palliative care. Healthcare professionals are committed to improving quality of life of families and their children at.  A comprehensive and co-ordinated support approach, keeping your child and family at the centre of all decisions is essential at end of life.

Sharon Thompson, mother to Victoria, talks about how she made memories with her child here: Making Memories

[Written by Joanne Doyle, 2014]