I always
used to wonder why it is so hard for some patients to get a proper diagnosis. I
reasoned that when a patient is seriously ill, doctors will continue to look
for an answer until they find the cause. Someone must know the disease, which
means it is just a matter of referring to the right person, right? Gradually, I
came to find out that medicine does not work this way. This is unfortunate
because a lot of rare diseases are only diagnosed after many years, if they are
ever diagnosed. So why is it so hard to effectively diagnose patients? After
seven months of health care experience, I came across two main causes for this
problem.
Medicine is
a field of fast, ongoing progress. This is positive as survival rates for
diseases go up and the number of undiagnosed patients goes down. But ongoing
progress also means that medical professionals no not have all the answers. Diseases
are complex and often have many manifestations. It is unreasonable to expect to
make a diagnosis every time because currently, we can’t distinguish between
certain ailments yet. It will take decades to be able to pinpoint some
diseases, especially mental disorders, which can mimic physical disease.
Another
aspect of diagnosis that can be overlooked by patients and family is the
difference between theory and practice. In theory it is possible to monitor a
patient closely and be on top of any changes until there is nothing new to
discover. In practice this approach is undesirable (a lot of time investment on
the patient’s part) and unmanageable (far too expensive). In practice, nurses
and doctors have a large workload which limits their diagnostic abilities. They
are human and hence can be sleep-deprived or having a bad day (or both).
These
factors add up to a frustrating situation for the patient with a rare disease.
They ‘win’ the lottery twice: not only do they get sick, but the process of
getting diagnosed is often long and complicated. One thing to speed up this
process would be research. Research is crucial to gain knowledge and develop
diagnostic tests. Money is necessary to conduct research. That’s why attention
for rare diseases is good. Not only will attention and explanation help with
much-needed empathy towards patients, but it also raises money.
29 February.
Rare Disease Day 2012. Spread the word. Get involved.
No comments:
Post a Comment