Those of you know me know that I care deeply about words and what they convey. Years ago, not long after I became the Executive Director of Breast Cancer Action – www.bcaction.org – I had occasion to look at the derivation of the word “patient.”
The word patient originally meant “one who suffers”. This English noun comes from the Latin word patiens, and the verb, patior, meaning “I am suffering.” It is related to the Greek verb paskhein, meaning to suffer).
Maybe it makes sense to call people who are receiving medical care patients. After all, if they weren’t suffering, they wouldn’t need care, right?
But the word “suffer” has another meaning besides feeling pain or distress. It also means to tolerate or endure pain or injury, or to be at a disadvantage. If this is what it means to be a “patient,” why would anyone want to be one?
No one wants to suffer – in any of the ways the word is defined. We particularly don’t want to suffer when we’re in need of medical attention. But it’s quite common, I think, for people to have the hardest time getting what they need when they are not feeling well or are dealing with a medical issue. (For a great perspective on how “patients” formed a movement to change the course of history, check out Sharon Batt’s Patient No More: The Politics of Breast Cancer.)
I am once again in the position of needing medical care, and too often have to struggle to get the care I need. I’m better equipped to do this than a lot of people, partly because I have so much experience being an advocate for others. When I think of what I have to do to get the best care for myself, I am deeply troubled by the fact that so few people have the resources I have that help me get what I need.
I think there are many things that might keep us from advocating for what we need in medical care. One thing is lack of access to care at all. But, for those of us have health care available to us, there are a number of things that might keep us from advocating for ourselves
- We think doctors are the experts
- We think we don’t know enough to ask the right questions
- We’re afraid that, if we ask too many questions, our doctors won’t like us and won’t take good care of us
- The situation in which we find ourselves is so intimidating that we are incapable of being effective advocates for ourselves.
Here’s an example of what it means to advocate for one’s self: I have Kaiser health insurance. Kaiser has a neurology department, but, as far as I can tell, they don’t have an ALS specialist. When it became clear — after many, many tests (there is no definitive test for ALS, so you have tests to rule out everything else it might be) – that I was probably dealing with ALS, I asked for a referral for a second opinion at the Forbes Norris Center in San Francisco, which specializes in ALS. That referral came easily enough, and I saw the folks at Forbes Norris twice. When I scheduled my next follow up at Forbes Norris, I knew I would need another referral, since the first one was time limited.
So I wrote what I thought was a very nice email to my doctor at Kaiser, explaining why I needed another referral and my preference for the comprehensive, coordinated care that Forbes Norris provided.
The reply I received was not encouraging. My doctor was “unable to provide” the referral I requested. She offered instead to refer me to physical and speech therapy at Kaiser, and to schedule a neurology appointment “to help with all of [my] needs.”
Since this what not the answer I wanted or needed, I wrote to my Kaiser doctor again. (The email system at Kaiser makes communicating with practitioners quite easy.):
Since this was not exactly the answer I want or needed, I wrote to my Kaiser doctor again:
As I tried to indicate in my [first] message to you, the considerable advantage to me of continuing my care at Forbes Norris is that all of the specialists who deal with ALS patients – from speech therapists, to physical therapists, to neurologists to social workers — are all in one location, so that my limited energies and ability to move are not taxed by going to 4 different sites.
As for a referral to Physical Therapy, I have had a PT workup at Forbes Norris. I don’t see why I should have to subject myself to another one. And the speech therapy referral you gave me last time, was, as you suspected it would be, less than helpful. By contrast, the speech therapist at Forbes Norris is amazingly helpful.
. . . please advise to whom and how I appeal your decision not to refer me to Forbes Norris for continuing care.
The next message I got said that my doctor had forwarded the message above to her chief of staff, and a new referral was on the way. My doctor apologized for the “annoyance” of having to go through this song and dance. Annoyance is one word for it. Nonsense is another.
Patient? Not I. And I suggest that those who need something from the medical system not be patient either. If you can’t advocate for yourself, find someone who can advocate for you. None of us needs to suffer at the hands of the medical system. Let’s find something else to call ourselves besides “patients.”
© Barbara A. Brenner March, 2011