- Explore the idea of what it means to be a ‘good parent’
- Introduce the idea of benefits and burdens
- Allow room for hope
- Offer a flexible approach in the face of
uncertainty – trial of treatment
Exploring the struggle to be a ‘good parent’
Parents want to do what is best for their child, but sometimes it can be very difficult for a parent to determine what ‘the best’ is.
The complexity of the struggle to disentangle their own wants and needs from the interests of their child should not be underestimated.
You can build trust and defuse potential conflict by naming the struggle, and providing a gateway to deeper discussions about how the team can support the parent to ‘be a good parent’ (Hinds and Patterson-Kelly 2010). Many parents feel inadequate and helpless, so it can be good to acknowledge the positive things they have been doing and the importance of their role.
Things you can say:
‘I can see how much you love (child). What do you need to do to feel you are being the best parent you can be for them?’
‘Many parents tell me how they feel caught in a dilemma. On the one hand they want to give their child every chance to survive. On the other, they don’t want their child to suffer. I was wondering if you might feel that way too.’
Exploring the difference between ‘could’ and ‘should’
There may be many interventions that are technically possible. The challenge for the treating team and the family is to determine which interventions are in the child’s best interest. Thinking about the benefits and burdens of the various options requires a meeting of minds. The paediatrician will understand this from a clinical perspective, but only the child and parent will know what they experience as individuals.
For example, some children do not find hospitalisation burdensome. Others are terrified.
Things you can say:
‘There are many things we could do … the question is what should we do?’
Allowing hope
Hope is important and it is not always necessary for families to ‘give up’. It is possible to hope for many different things at the same time. Parents can understand their child’s prognosis intellectually, but emotionally they may hold on to a secret wish that the team is wrong. Sharing a family’s hope for a good outcome can be very helpful (Back, Arnold and Quill 2003; Wolff and Browne 2011).
Things you can say:
‘Many parents tell me that in their head they understand how sick their child is, but their heart tells them not to let go. Is that how you feel?’
‘We are all hoping things go well for (child). It is important to also have a think about what we would do if things don’t go so well. So we can hope for the best and plan for the rest.’
‘I wish I could tell you that we could cure (child’s) illness.’
People generally hope for more than one thing. Exploring the range of hopes can be very helpful (Feudtner 2009; Feudtner 2007).
Things you can say:
‘It will help me care for (child) if I know what it is you are hoping for at the moment.’
The initial response is likely to be something unachievable (for example, cure, survive to Christmas).
Empathising with that hope rather than trying to correct it can be a powerful intervention.
‘I really wish that could happen. Can you tell me what else you are hoping for?’
Dealing
with uncertainty – trial of treatment
In circumstances where there is uncertainty, a trial of treatment may be appropriate. It is important to explain two things:
- the time period required to demonstrate success or failure
- what the indicators of success and failure would be.
Things you can say:
‘At this stage, we are not certain whether this deterioration is due to (child’s) underlying illness or an infection that they will recover from. We should have a better picture after 72 hours. At that time we will be looking for them to be needing less help with their breathing (for example, lower BiPAP pressures). It
will be important for us to sit down together again at that time to discuss how they are going and whether continuing the BiPAP would be the right thing to do.’