Good Death Week - Talking about death

The death of a child can be a taboo subject, however with Good Death Week now upon us, it's a good opportunity to share my experience of working with parents both pre and post bereavement.

Part of my role as chaplain at Robin House is to encourage parents to think about their wishes around end of life care and start a conversation using an Anticipatory Care Plan (ACP). This gives parents the opportunity to think about what they want for their child as they approach end of life. The ACP focuses on the family's priorities, putting them at the centre, identifying what's important to them and their child. In my role as chaplain I look at some of the spiritual and religious needs.

• Wishes in life - do they have a bucket list we can help with?
• Wishes in death - preferred place of death, who they want with them at time of death etc.
• Spiritual needs - what is important to your child? This could be a favourite toy, teddy or piece of music.
• Religious needs - Some parents ask for their child to be baptised or would like a prayer of blessing. Others might request the last rites from their priest or a visit from other faith leaders.
• Funeral planning - I sit with many parents and support them to plan their child's funeral. This discussion usually includes whether their child will be cremated or buried, who they'd like to officiate at the funeral and where they'd like the funeral to take place. This conversation usually includes music choices, readings, poems, transport, flowers, coffin choice etc.

It takes great courage for parents to talk about what they'd like at their child's funeral, however there is often a sense of relief when it is done. I encourage parents to think about completing an ACP for their child so that they can put it to one side knowing that it's done. This then allows them to focus on spending time with their child, creating cherished memories.

Another taboo subject is the physical pain that parents experience following the death of their child. Parents say the physical pain is indescribable. Many parents suffer anger, guilt, hopelessness, depression and isolation. The death of a child can put tremendous stress on marriages and relationships. Everyone grieves differently and different grieving styles can lead to further upset and misunderstanding, exacerbating the pain they already feel

Every part of a parent's life is impacted by the loss - emotionally, physically and spiritually. There is no right or wrong way to grieve. Some parents may be angry at God, while others find strength from their religious beliefs. The effects of grief and stress can manifest physically and can cause problems with sleep, concentration and appetite. It can also lower our immune system and make us more vulnerable to illness.

Parents often say the loss of a child can feel isolating. Many people will cross the road to avoid grieving parents because they don't know what to say

The following are examples of what bereaved parents say following the death of their child:

• "Please don't stop talking about my child as if they never existed"
• "Please say my child's name - I miss hearing their name"
• "Let me do things in my own way and time."
• "We will be forever changed so please don't expect us to be the same people"
• "I am never going to get over this so stop telling me I have to.
• "Please don't tell me my child has gone to a better place"
• "It really upsets me when you say you know how I feel. You'll never know how I feel if you've never lost a child

My role is about having time to listen, to offer support and look after the emotional, spiritual and religious needs of the children, young people, families, staff and volunteers of all faiths and none.

We're here for parents from the moment they and their child are referred to CHAS, through the precious years they have together, and in their bereavement we support families to create moments that are treasured forever. We support the whole family - parents, siblings, grandparents and extended family.