Parents may come with misguided expectations
The brutal truth
This world is a hostile place. We all suffer on occasions, and the children seeking our care suffer too.
To some parents, this is unthinkable to acknowledge. They dream of an ideal childhood for their child without upper respiratory tract infections (normally up to 7/year), no ear infections, no pain or distress for their child. If the child then becomes ill, this needs to be “fixed” right away. And it needs to be someone’s fault if the cure is not available immediately.
Over demanding parents feel torture
Unfortunately, this is the parental “La-La-Land”. Human beings become ill, and it is no-one’s fault, and not every condition can be fixed.
This is bad, when it hits you, it is worse, emotionally, when it hits your child. Every normal parent would give their hand or foot for their child. If they wouldn’t, then there is something seriously wrong.
Parents may come with misguided expectations of constant health and happiness.
There is no health care system in the world that offers cures as quickly as the parents would want. Any disease takes time to overcome, and this time does feel for parents as torture to see their precious one struggling with the reality of life.
Over demanding parents struggle with lack of control
Parents may come with misguided expectations.
Seeing their child suffer inflicts serious pain on any normal parent. We doctors should worry more, when we do not experience parental anxiety and compassion for their child. Their “mirror neurons” should be activated.
The reality of their child’s disease hurts the parents also in another way: They have no tools here, they can’t do anything, but entrust us with their precious one.
This lack of control appears to be especially hard for fathers. I have seen this a hundred times in the neonatal unit. Hand wringing parents, with mum close to tears and dad close to fight.
Parents may come with misguided expectations to get a quick fix.
How do they react?
One parental strategy is to keep the pressure up. Requesting answers, prediction and certainty. Even when we have none to offer.
They perceive our lack of clarity as lack of knowledge. And in some parents, this perceived “lack of knowledge” can trigger them to act as persistent advocates for their child, questioning all medical reasoning, decisions and actions. This can easily lead to a sensation of hostility in the room.
All doctors know the “difficult” parent. They are the ones who come with misguided expectations.
What do they ask for?
They long for certainty, so they might ask for additional or repeated investigations. These requests could be realistic or unrealistic.
But additional investigations come with pitfalls:
- Additional time required
- Additional usage of resources
- Some tests are invasive and carry their own risks
- Tests deliver results with a need for interpretation
- Tests contain some uncertainty
Parents may come with misguided expectations.
Sometimes they might demand a second opinion, especially when the level of trust is already low. The internal goal here might be to avoid reality and to get what they want.
But reality does not work like this.
Neither does’ medicine.
What do they really want?
They long for control and certainty. They try to avoid self blame by reducing the risk of making a “wrong” decision. Sometimes they freeze in indecisiveness, thinking that no decision is better than the wrong one. Alternatively, they long to deflect the blame for the illness of their child to the medical team.
Some parents struggle to let go of the power over their child here, although they lack the competence for the treatment. In these latter cases, the conversations may border on the brink of power games (“I will sue you, if you don’t …”).
Parents may come with misguided expectations.
How to respond?
One question I typically ask the medical student and myself is: Whom are we treating? The child’s disease or the anxiety of the parent, the uncertainty of the referring general practitioner or lack of experience of the A&E resident. All are possible.
When we get to the bottom of that question, we can target our answer appropriately.
Some strategies
One strategy, to help here, could be to offer information to parents about what we would consider normal.
- Normal findings (with their variability).
- Normal progression of diseases (it might get worse before it gets better).
- Normal duration of healing or the persistent presence of lymph nodes after an infection.
Even though, this might come as a shock for them, it would allow us to deal with reality rather than with wishes and illusions.
Parents may come with misguided expectations regarding “normal”.
Limit investigations
Parents may come with misguided expectations.
Performing medical investigations just to be sure is the wrong approach.
No investigation ever will provide 100% certainty. Things just do not happen that way.
The more we investigate, the higher the likelihood that we encounter false positives. Not because there is an additional-hidden problem, but just due to mere statistics. Often enough we can find ourselves in the position where we chase “result-ghosts”, results that “force” us to further investigate, just to be sure.
With every test, we would need to ask ourselves:
- What is the question I want to answer?
- What are the potential consequences of a positive outcome?
- What are the potential consequences of a negative outcome?
- What impact will this result have on my treatment plan?
Those questions help us to grasp the real value of testing and to avoid unnecessary usage of resources.
Parents may come with misguided expectations regarding certainty.
Remain as clear as possible
In situations where parents seem to expect to maintain power over their child and by extension us, it might be useful to remind them of the shared goal: the health and safety of their child. This is something we have in common, even while we might dispute about the way and means to achieve that.
We need to get the tricky topics in the table (what the parents really fear, what the parents really need presently).
Parents may come with misguided expectations regarding predictability.
When it goes too far …
A special and extreme variety of this behaviour are parents with Münchhausen by proxy disorder. This is hidden behind the fear for the child, but in those cases, it is really the parent, who requires help and that sometimes urgently.
In a nutshell:
Parents may come with misguided expectations.
Over demanding parents still believe that suffering should not be part of their child’s experience.
Communication lives on comments … fancy to share yours?