Parenthood is full of ideals, expectations and hopes as well as some trepidation as to what’s to come. How will life change, what kind of parent will you be, what will they be when they grow up? Thoughts of happy family days at the beach bring excitement as you plan the future. However, when a child is born with, or develops, a life-limiting illness, that picture will skew, and the happy hopeful visions will seem a million miles away. The seaside might have to have a paved walkway that can take a wheelchair, and the future may look more uncertain.
At Helen and Douglas House, we face the uncertainty together, giving parents space and time to explore their hopes, manage their expectations, and express their fears. To mark Dying Matters Awareness Week, our hospice doctors Laura, Emily, and Charlotte talk about how they approach the conversations of dying with families and how having the right support and end of life care is vital.
How do we talk about dying with a parent?
“Planning next steps and their child’s end of life journey also gives parents clarity and control in what feels like a hopeless situation – hoping for the best and planning for the worst.”
The end-of-life conversation is best approached openly: How have things been? What has changed? What’s worrying you? Listening, responding honestly, and acknowledging together that their child is deteriorating can be enough for a parent to understand, for their world to stop spinning momentarily. We would then gently explore wishes and preferences, around place of care and which medical interventions might feel right for their child. These wishes can then be written into an advance care plan (ACP).
These discussions are often filled with many emotions and it’s important for these to be given space too. Many parents will cry, some may rage. Often a focus on priorities, practicalities and next steps can be useful for parents as they try to navigate their feelings. Considering the needs of the parents, siblings, and grandparents, and how to keep their child as comfortable and pain-free as possible are vital. It’s also important to acknowledge uncertainty and how difficult this is for families and children. Planning next steps and their child’s end of life journey also gives parents clarity and control in what feels like a hopeless situation – hoping for the best and planning for the worst.
What does a 'good' death mean? What does it look like?
“As palliative care doctors, we want every dying child to have the most comfortable experience possible where their families have as much positive time as they are able.”
The idea of a ‘good’ death may seem quite odd to think about, but for the families and children we support, having a place where the family can all be supported together, where their wishes are heard, and where their children can live their short lives to the fullest can transform their outlook completely.
What would be seen as ‘good’ for one family might seem strange to another. When we work together with families on their wishes and preferences, it can become clearer what may be right for an individual.
If a parent is able to acknowledge their child is dying, they may often consider home or hospice to take away as much of the medical environment as possible, replacing it with their child’s favourite teddy and space to share some stories. There can be time for reflection, memory making (such as handprints or hand casting) with nurses and doctors helping to manage symptoms and give medications in an unobtrusive way. But for others, the hospital environment with familiar teams is the right choice.
As palliative care doctors, we want every dying child to have the most comfortable experience possible where their families have as much positive time as they are able. Where possible ways that the child may die have been gently explored and planned for and where symptoms of distress or seizures or pain are as controlled as they can be, but enable cuddles and smiles.
What are the main questions parents have and how do we help?
“At the very end-of-life we cannot know for certain what a child may know, but we can know how we made them feel, loved, and cared for and special.”
A parent will often ask when their child will die. When is it going to happen, is it now? Children don’t read the textbooks, and we honestly can’t give an exact answer to this. But developing understanding that their child is dying, holding the uncertainty and thinking together about how to make that the best possible experience it can be is key.
Will they be in pain? Are they suffering? No, not if we can help it. There are lots of options and ways pain relief can be given, and lots of things families can do to help – distraction, cuddles and reassurance are just as important as medicine. In some cases, making the suffering the least possible may mean accepting their child’s life may be shorter, although it is also seen that good symptom control may even allow longer life.
Do they know it is happening? Children can see the world in a very literal and simplistic way. Depending on the age and abilities of the child they may have some idea, or they may wonder why everyone is sad around them, or why they have to take medicine now. Giving them space to play, and be themselves, and answer any questions simply and honestly allows them to still experience childhood, while getting the treatment they need. At the very end-of-life we cannot know for certain what a child may know, but we can know how we made them feel, loved, and cared for and special.
Perception Matters
While death is a key part of the reality we prepare for at Helen & Douglas House, we also give children and families a place to live and feel supported. Giving children and families the space to be themselves and navigate their unique journey is what we strive for.
The umbrella not the rain
Zimmermann and Mathews in JAMA Oncology (2022)
Children’s paediatric palliative care is all-encompassing, wide-ranging care provided to children and their families lifelong. At the hospice, our teams of doctors and nurses will work with other medical professionals – sometimes across the country – to provide holistic care, making sure families are supported right from the start.
Early palliative care input can be seen as ‘the umbrella not the rain’ – where families are given the supportive tools they need for when it might start raining, when their child is deteriorating, rather than getting caught in the downpour. One of the joys of being a palliative care doctor is holding the child’s hand whilst their parent has a coffee and the nurse is busy getting medications ready… knowing the umbrella is by the door if its needed.