Prescribing
hope
Some
80% of paediatric cancers are
cured.1
See? Not as bad as the charities would have you believe. Those black
and white adverts of 3 year olds going head to head with the grim
reaper are a bit misleading. Children have a much better success rate
than adults and have fewer side effects, because their bodies are still
growing.
Cancer in childhood is
rare, but in fact 1 in 333 children will have had cancer by their 15th
birthday.1
And surprisingly, cancer is the leading cause of non-accidental
death in kids. This daunting area of medicineone of the largest
specialties within paediatricsis also one of the most colourful
and well supported. I spent two weeks on a paediatric oncology ward and
loved it. I met so many characters. Some even had celebrity status.
Particular kids showed great resilience and I found them truly
engaging.
Have
you ever seen a pair of clowns do a ward
round twice a week?
I was initially scared by what I should say to the
kids and their parents. You certainly cant say,
Youll be fine, or, Ooh, what a happy
healthy baby. No one ever knows what the outcome will be.
Families have to live with constant
uncertainty.
How did the staff
support the families amid such instability? The nurses and doctors made
it their top priority to listen. The families really appreciated the
staff having time to discuss matters as concerns arose. This proved to
me that you can support patients through listening, even when the
outcome is dismal.
As a result, the
ward was relaxed and calm. Children were often happy and the parents
were able to enjoy the unexpected giggles and laughs. It is the most
patient oriented environment I have ever experienced. Have you ever
seen a pair of clowns do ward rounds twice a week? In fact, the ward
was more oriented towards children than a lot of families are. I heard
stories of parents thanking staff because supporting their child with
cancer was an opportunity to refocus their lives on the most important
part of family life.
Patients and
their families were encouraged to hope. Happy proactive parents are
hugely valuable to the child in spotting changes in their
childrens condition and in giving support. Research has shown
that fostering hope may protect parents from unhappiness and
optimism can generate feelings of
control.2
By strengthening the parents positive expectations, you are
hopefully encouraging a supportive family for the
patient.
If parents are encouraged
to be eternal optimists, however, their approach may not be appropriate
to their childs own interests. In particular, evidence suggests
that children do not get appropriate end of life treatment early
enough.3
Parents understanding that their child has no realistic chance for cure
lagged behind the oncologists specific documentation of this
fact by more than three months. In this time, the child is less likely
to receive appropriate hospice care, more likely to have uncomfortable
cancer therapy, and the parents are less happy about
care.4
This may be attributed to the doctors lack of clear
communication or the parents lack of acceptance. Maybe fostering
hope makes it difficult to accept any final decision. Whatever the
reason, evidence suggests that children may receive less appropriate
hospice care and a lower quality of life for this period of
misunderstanding.
In fact, the child
may well reach a more reconciled view not to carry on before the
parents do. Since the childs quality of life is the most
important priority, his or her opinion of treatment is crucial. This is
really difficult. How do you tell whether a kid whines because you have
not bribed him with a Happy Meal, or whether he or she has had enough
of life altogether? This is where medicine becomes art; I have no
answers for that.
And
what happens if the hope for a cure has gone? Some people are still
happy. Patients inevitably would have fatal recurrences, but still
manage to lead a normal life. Some said they felt better after the
uncertainty had gone. Even the sad bits can be happy.
Happiness, relaxation, and realistic hope should be part of almost all
treatments.