E-patients with Agency (or Attitude?)

What are the social and psychological factors that affect how someone is treated — or even their health outcomes? This question has popped up in my reading and in my work quite a bit this week, so I wanted to share what I have learned from three leading thinkers: Peggy Orenstein, Dr. Jeffrey Lin, and Dr. M. Chris Gibbons.


Peggy Orenstein recently published an essay in the New York Times entitled, “Stress Test.” Here is an excerpt:

We of the postfeminist generation grew up being told we could do anything, be anything, if we just put our minds to it. Yet, if we have the power to create our own fates, wouldn’t the corollary be that we’re also responsible for our own misfortunes? And, in a kind of double magical thinking, shouldn’t we be able to cure ourselves using the same indefatigable will? No surprise then, that in a 2001 Canadian study of 200 ovarian-cancer survivors, almost two-thirds believed that stress caused their disease and more than 80 percent attributed their survival to a positive attitude.

She writes about her own experiences and the rage she feels when people make assumptions about the mind-body connection. She cites a study of women undergoing in vitro fertilization: “The fretful conceived as readily as the chill.”

I wrote to Peggy, asking if she would identify as an e-patient. Here is what she wrote back:

I do think that educating yourself, advocating on your own behalf and being engaged in your own health care decisions is crucial. And that’s a lot more effective than thinking if you just have a “positive attitude” your disease will go away. Having a sense of agency is a lot different than just being “positive,” especially because sometimes agency means being VERY uncooperative and unpleasant, as any long-time patient knows. At the same, time, it’s hard to feel effective or to take control of your health if you’re depressed. And it’s easy to get depressed if you’re being treated for a serious illness. Being depressed in and of itself may not affect your outcomes as a patient, but if it affects your behavior–if, because you’re depressed you don’t take your medication, don’t exercise, don’t eat right, skip doctors’ appointments, don’t act in your own best interests–then it’s a problem and needs to be addressed. But there’s a real distinction there (I hope!).

Illness is stressful, but your stress didn’t cause your cancer, infertility etc. Reducing stress may well make you feel better, able to tackle what you need to more easily. But if you can’t or don’t want to or aren’t able to reduce the stress it’s important not to beat yourself up about it (which just creates more stress….).

Am I an e-patient? Sure. But I feel lucky to be in a position to be one. I’m educated, white, middle class. No one’s going to mess with me or ignore me. I can navigate the system easily. I often think: what if I were poor? What if I were uneducated? What if I were a person of color? What if I were old? Would I get the outstanding level of medical care that I experience? Would I still be alive? Being an “e-patient’ is an absolute necessity these days, but it’s also, sadly, too often only possible for the privileged. And that’s something I hope we can change…..

These sentiments were echoed at this morning’s Ovarian Cancer National Alliance conference, where I shared the stage with Dr. Jeffrey Lin and Dr. M. Chris Gibbons.

I presented the Pew Internet Project’s latest “thermometers of access” (May 2008 data) showing disparities among demographic groups, connecting our politics research with our health research to show how some people are accessing “industrial strength” information these days (while some are stuck with “consumer strength” information).

Dr. Lin, a gynecologic oncologist, shared his observations about what enables some patients to get the best care — patient/family involvement (NOT “doctor knows best”); pick your battles (Susannah’s question: how will patients know which ones to pick?); have realistic expectations balanced with hope (or, as he also put it, “a positive attitude framed by realism”).

Dr. Gibbons, associate director of the Johns Hopkins Urban Health Institute, talked about the future of technology and health, including a great riff on what he tells doctors who are nervous about patients controlling doctors’ access to their electronic medical records: “It is no different from our current situation. If a patient doesn’t trust you they are already not telling you certain things.”

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Comments

5 Responses to “E-patients with Agency (or Attitude?)”

  1. Dan Hoch says:

    Wonderful observations and report back from the OCNA conference. Thanks so much. There is one subtle attitude that I have to try and probe a bit though (and, I admit, it’s a side issue to the main theme of the post). Stress in the sense of “the fretful conceived as readily as the chill” may be accurate, but stress itself pretty clearly does cause some disease, and significantly worsens most illness. I’ve been doing a lot of work with Herb Benson and his colleagues at the Benson Henry Institute for Mind Body Medicine and have become a convert to the position that stress needs to be managed as aggressively as weight, blood pressure or any other part of our health.

  2. DeborahBell says:

    Peggy Orenstein’s article – and the sections you quoted – are very provocative. Stress is a constant in most of our lives, as we are bombarded with more and more information and more multi-tasking. When I want to cook for pleasure, I try very hard NOT to also do the laundry, or anything else. Multi-tasking (and I’m good at it) is the bane of my existence. And for me, the lack of the luxury of taking my time and completing a task (outside of work) is very stressful. At work, of course, completing tasks is the norm and whether I am multi-tasking or not, they get done.

    I think women in the feminist generation fought to be able to do anything, be anything. Never mind the post-feminist generations, whose attitudes were informed by the change the feminists brought about.

    Magical thinking, however, is a very dangerous road to take. As e-patients we think we have all of the information, and so can make incredibly informed decisions. However, I don’t think we have the control we wish we had, and we suffer because of that. And to think that something we did caused the disease we now have is a frightening and generally incorrect assessment.

    I see it on the listserv a lot. Women wonder what they did that caused their cancer. The truth is we have had vegan/macrobiotic/fitness instructor/health conscious women on the list, who still were diagnosed with cancer. We also have had smoking/drinking/overweight women who got cancer, and everything in between. And the stress they cause themselves by trying to figure out why they got cancer is destructive for them, and keeps them anxious.

    These are women (I run an ovarian cancer listserv so it is gender-limited) who are computer users. Some have far more comfort with them than others, but they are all capable of sending email. There is a benefit (in my mind) to using a boring technology to achieve a great success in helping people. (I thank Susannah for stating that concept in those terms, in her talk at OCNA – I hadn’t thought of it in quite that way but it is absolutely accurate.)

    I think there is a major gap – even more than the age-related gap – between people who use computers for information and those who do not. They exist in every age group. There is a large gradient among the computer-users – some use it easily, some with difficulty; some frequently, some infrequently. Still, it is almost like the gap of the “haves” vs. the “have-nots”, in socioeconomic terms.

    I am always astonished by people who don’t just automatically go to a computer for information; by people for whom a computer is a guaranteed time-waster (to quote them). These aren’t people in their 80s but rather are people in age groups that generally have comfort with and access to computers.

    Access to medical information is somewhat like that. For some, access will always be easier and more attainable than for others. And lately, access to and USE OF computers is a dividing line. Is it based on class demographics? Yes, partly that, and of course age. But it is also a choice. Most public libraries have computers available for use. They usually have classes as well. But to take that step presupposes that you are comfortable with computers, and perhaps are comfortable admitting you need help using them. At that point we do cross into an area bounded by economic and social barriers and background.

    The electronic medical record controversy… it is hard for me to know where to begin with that one. Of course confidentiality is an issue. But I think the real concern should be related to insurance companies getting hold of data, not with doctors having access to your data. There are so many issues regarding insurance claims that the thought of those companies having total access alarms me.

    I’ll have to think about that one some more. It’s huge.

  3. Peggy Orenstein says:

    My point is not that stress is irrelevant, but that the connections are more complex than people realize, and that the links tend to be over-bought and over-sold and the results are that too many people end up being doubly victimized–diagnosed with a chronic/disabling/fatal illness, then blamed for it. But certainly, our culture pushes us to be as stressed as we can possibly be, and that’s bad for our blood pressure (which in turns is bad for our hearts), discourages exercise, creates sleeplessnes, encourages over-eating…..It ain’t good. I don’t like feeling overly stressed (though I also don’t like feeling NO stress, as it happens).

    But it’s not why a person got cancer. Nor is the disease or its recurrence a result of a negative attitude or deep-seated anger. My general response to people who believe those things is to challlenge them to visit a woman who is about to die of breast cancer, who has two small children that are about to lose their mother and tell her TO HER FACE that she is dying becuase she has a bad attitude or wasn’t an “exceptional patient.” Or perhaps they could expalin to a 5-year-old with leukemia why she “needed” her cancer. Usually, when people consider the flip side of their beliefs (i.e., that people who died of cancer must have bad attitudes, don’t manage their stress etc.) they become pretty uncomfortable.

    We all want to find reasons why someone else got sick to reassure ourselves that we’re safe. And we all want a sense of control. But it mustn’t come at the expense of legitimate health care or demonizing the ill.

  4. DeborahBell says:

    Re:”…to challlenge them to visit a woman who is about to die of breast cancer, who has two small children that are about to lose their mother and tell her TO HER FACE that she is dying becuase she has a bad attitude or wasn’t an “exceptional patient.” Or perhaps they could expalin to a 5-year-old with leukemia why she “needed” her cancer. Usually, when people consider the flip side of their beliefs (i.e., that people who died of cancer must have bad attitudes, don’t manage their stress etc.) they become pretty uncomfortable.”

    Peggy, that’s a perfect example. I can’t say it better.

  5. I am thrilled to discover this blog. I run a growing diabetes support group with about 7000 members and think about issues of agency, ethics, and health outcomes day and night. It’s wonderful to see a group of people so dedicated to promoting self-directed medical care and direction.

    Deborah’s comment above about access to medical records is also interesting. As someone who crunches numbers on websites and compiles stats constantly, I have become very aware of my digital footprints. There are all sorts of ways you can let personal information leak out.

    Over the course of a year, we have a half dozen people contact us to edit their messages to remove personal information. Everywhere you can enter something, we try to stress how important it is to remain anonymous online when discussing medical issues. It might not seem like a big deal now, but what about when an insurance agent Google’s your email address or always-used username in 30 years. Who knows how sophisticated these types of datamining tools will be by then.

    Ultimately, caution is required, but as Peggy writes, the empowerment of self-education and shared patient knowledge is profoundly important. Your doctor may invest 15 minutes of an office visit explaining your options. For life-altering treatments, don’t you owe it to yourself to explore quite a few more?

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