I’ve been
pretty frustrated lately by all of the backpedaling I have to do as far as my
health is concerned.
I feel
like the main problem is that I don’t have a medical team.
I have a
group of doctors that I see, that are responsible for my care, but they are not
a team.
I have a
primary care doctor, a rheumatologist, a nephrologist, a gastroenterologist, a
psychologist, a psychiatrist, an ear, nose, and throat doctor, and a
neurologist. Some of those doctors I do
not see regularly, like the ENT and the neurologist. But the others I see multiple times a year.
However these
doctors exist in isolation of one another.
They don’t talk. They barely know
each others’ names. And they are in the
same, albeit large, medical system.
And this
is hurting me.
One hand
doesn’t know what the other is doing.
And this often means multiple calls and e-mails to multiple offices
about the same issue.
And lately
it seems like nurses are on a power trip and are opting to make decisions
without consulting the doctor. I’ll have
another post on this later.
But
suffice it to say that I can’t do it all.
I can’t interface with all doctors and get the message across to all the
others.
There is
no “I” in team.
Right now
I feel like I am a team of one. And
that’s not really working. One person
does not a team make.
That isn’t
to say that I don’t have an unofficial team around me, like my boyfriend,
family, and friends, who I am sure would advocate for me should I be unable to
do it myself.
But I
don’t have an official, expert team.
A group of
experts is great, but not when they don’t work together. In fact, it seems that this can be counterproductive.
The point here
is that a medical team is essential.
The idea
of an interdisciplinary team in the medical setting is not a new idea (De
Wachter 1976; ). Neither is considering
the patient to be an essential part of that team (De Wachter 1976).
According
to one article, “Communication failures are the leading causes of inadvertent
patient harm. Although medical care is
delivered by multiple team members, medical quality and safety has historically
been structured on the performance of expert, individual practitioners. Effective communication and teamwork have
been assumed, and formal training and assessment in these areas has been
largely absent” (Leonard, et al. 2004: i85).
We should
also do well to remember that pharmacy technicians are also a part of our
medical team. I’ve had a lot of issues
with prescriptions and pharmacies lately.
I was out of town, and because of the holiday, and when my pharmacy reopened,
they were out of the medication, so I ran out of medication on Thursday and
didn’t get the medication in the mail until Monday. This is the longest I’ve gone not taking this
medication. I don’t blame the pharmacy
completely.
But my
frustration, yet again, is that so much of my well-being is in the hands of
others, and that does not fill me with confidence. And when it is totally out of their hands, it
is totally overwhelming for me.
Lines keep
getting crossed, things keep getting messed up, and I feel lucky that I am on
top of my care enough to be able to know when errors are being made.
But I also
worry about those who are not as much in control, for whatever reason, and don’t
know that things aren’t the way they should be.
I do know
that my PCP and rheum do talk to each other, which is a huge relief for me, and
has been helpful. Despite this, my PCP
often tells me to ask my rheum or talk to my rheum or try and get in to see
him. And then I get told that I can’t be
seen sooner than my appointment that is three months away. Then I e-mail him directly (and subvert the
system) and get in earlier. Only because
I need to see him.
So how do
you create a medical team that is willing and able to work for you? It’s great to have experts, but experts with
disparate goals doesn’t do all that much.
One of my goals for the New Year is getting my healthcare back on
track. That may mean having to find new
members of my medical team. But it
definitely means finding a way to get all of my medical professionals on the
same page. Or at the very least,
communicating with each other, with my pharmacies, and seeing me as an
inherently important part of this so-called team.
References
De
Wachter, M. 1976. “Interdisciplinary Teamwork.” Journal of Medical Ethics 2: 52-57.
Firth-Cozens, J. 2001. “Cultures for Improving Patient Safety Through
Learning: The Role of Teamwork.” Quality
in Health Care 10 (Supplement 2): ii26-ii31.
Leonard, M., S. Graham, and D. Bonacum. 2004. “The Human Factor: The
Critical Importance of Effective Teamwork and Communication in Providing Safe
Care.” Quality & Safety in Health Care 13 (Supplement 1): i85-i90.
Wow. Your coping strategies are exhausting in themselves. A more burdensome system could not be created by design. Thank you for sharing your story and raising a crucial healthcare issue. My hope is that the requirements and incentives of the Affordable Care Act help to move toward better outcomes, which themselves require more collaborative efforts (e.g. Shared medical records via EHR). Practicing in silos is no way to do medicine.
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