Patient? Who’s patient?

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 – – 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



This entry was posted in ALS Treatment, Illness. Bookmark the permalink.

26 Responses to Patient? Who’s patient?

  1. BobO says:

    I never think of “patients” as “patients”. They are all people who need some help and human caring.

  2. Mary Jo Kahn says:

    Insurance companies, which Kaiser certainly is, only provide medical care in order to make money. It is not altruistic by any stretch of the imagination. Some of the doctors and nurses may be compassionate, but not the institution. Insurance companies ALWAYS use the “hassle factor” to keep their cost down. They say no, once or twice, then, make you jump through a bunch of unnecessary hoops, knowing all the time that they plan to provide the necessary care. In the meantime they save a fortune because those who are either too sick to fight or too “patient” to argue stop asking. I am so glad you are still able to be the advocate you were born to be. Go Barbara!

  3. Randy Milden says:

    As usual a contrarian here. Dictionary definitions and derivations aside, my personal connotations to the word “patient” are all about caring and nurturance and healing. Surely the legacy of my late father, an old-fashioned small-town family doctor who made house calls until he retired twenty years ago in his mid-70’s. It is an understatement to say that the current health care system challenges those associations. But the word client, suggested as an alternative to patient by a post-er on Barbara’s FB page, feels even more problematic in today’s medicine-as-business context.

    • bbzinger says:

      If only we were still in the days of your late father. And, of course, the larger point I was trying to make is about the need for advocates — for ourselves and those we love — in the mess of what we have come to call health care.

  4. Tori Freeman says:

    It’s so frustrating to have to fight for our basic needs. Thank you for your inspiring post. Clearly, they don’t know who they are dealing with! They soon will. Sending love and hugs, T

  5. Jennifer says:

    It’s so great to read your smart, insightful words on your blog. Though I so wish it weren’t in the context of your dealing with ALS. It also just enrages me to think about what all of those (most) people without a fraction of your capacity to be an advocate for themselves do. It shouldn’t be such a battle to get the health care that we need. Two weeks ago I was staying at the hospital with my stepmother who was having a hysterectomy and the amount of advocating she and I needed to do to get her pain under control was a shock to me. As I watched her suffer through that first night, I wished for her that she didn’t have to expend her energies advocating for herself.

  6. mary Whitehead says:

    I’ve been a patient, but I am not patient with the current medical “industry. We were taught, as kids, that “patience is a virtue”, and, in certain settings, it is. Not in the medical world. One must find the Drs. who listen, and who care; same goes for trying to train the corporations and government agencies who currently rule. And, with your words and thoughts, I believe you can move mountains. Thanks for putting precious time into making this blog! Love to you, Mary

  7. Bernadine says:

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  9. Cancer Damaged Party Pooper says:

    Another good term to think about is “practice” as in “medical practice.” As in: Hey doc, if you need someone to practice on, no problem. Cancer patients are plentiful, and ready to try anything!

  10. eivai says:

    Thank you for this great piece of content. Best Regards

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    The wish was father to the thought.

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  21. Kathy Page says:

    You are living in a ‘for profit’ medical environment, which distorts everything and which I do not think I could bear. When you are sick, you should be looked after, period. Not have to fight for care, or arrange someone else to do so for you!
    Even in a shared system, though, there is suffering and delay caused by bureacracy and inefficiency. Some are better than others. France is a good place to live.

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