Supporting parents of children with incurable cancer

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Published: 8 May 2019
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Dr Pamela Hinds - Children's National Medical Center, Washington, USA

Dr Pamela Hinds speaks to ecancer at ONS 2019 about how oncology professionals can support parents of children with incurable cancer.

She speaks about how to support parents in achieving their own definition of being a good parent, and what this often entails for both the oncology professional and the family.

Dr Hinds recognises that it is important for oncology professionals and the family communicate, but that this can have difficulties for both.

I’m going to be talking about a construct that we have identified in a series of studies working with parents of children with incurable cancer. What they’ve described for us is that internal to them they have a definition of what it means to be a good parent to a dying child. Each parent has this definition, it’s unique to that parent although there are some aspects that seem in common across parents. I’m going to be describing what they have reported as their definitions of being a good parent and also what we can do as healthcare professionals in oncology to support them at this time in achieving their definition before their child dies.

What are some of the things these parents need support with?

There are a number of elements that they have described. One, making sure that their child knows that their child is loved and particularly by them before the child dies. Making sure that they have done everything that they possibly could have done. Being sure that we regard their faith, if they are people of faith, as they achieve their definition. Being sure that they have been able to be well enough informed of their child’s status to be good parts in making good medical decisions related to their child’s current status and condition.

How can this support be provided?

This has been pretty interesting to me and so certainly it is to always let them know what’s been done against what possibly could be done and to let them know we’ve done it to the best of our abilities, that they have not overlooked anything. That seems to be the number one most important aspect for them to know and believe. To also know that they have been good parents, for us to point out what we have literally seen them do or heard them say that constitutes being good parents to a very ill child. To actively be present when it’s very hard to be present during those times; to know that they are unforgettable, that their child will be long remembered by us after they have gone home with or without their child.

What resources are required to provide this level of care?

Being a human presence. It’s not requiring lots of extra resources, it’s being able to be present, to ask the question about what it means to them to be a good parent, to listen well and then to the best of our abilities to honour their answers. So not a lot of extra resources being needed, just being very human and being very present.

Are there other challenges to providing this level of care?

The challenge for us is to be comfortable enough to pose the question, the question we call the good parent question – ‘Please would you share with me what is your definition of being a good parent to your very ill child now’ – trusting that you can hear the answer and act upon it. In addition, it’s the emotional attachment that we too have to this very ill child and to the child’s family in trying to remain supportive of them while also grappling with our own emotions.

What is your advice to oncology nurses who are working closely with families of children with incurable cancer?

It is in honouring their definition, trusting that they know this child very well and that we ought not to make decisions on behalf of the child or on behalf of the parents without fully engaging the child to the extent that the child can be engaged but always seeking the parent input to any next steps that might be options for the child’s care.

What is your take home message for oncology nurses and other medical professionals?

It is indeed to believe that each parent has that definition within them, that the parent is able to articulate that if we are able to listen. To know that this definition is so important to the parent that they will prioritise it above other relationships. To know that we can hear their definition and to act upon it and that if we are able to do so we position the parent to have better health and family wellbeing outcomes if indeed we act upon their definition.