One of the key learnings of my first year as a student of the e-patient movement, studying how healthcare is evolving, is this: People get radicalized when it gets personal.
This is one such story: it’s the e-patient awakening of a long-time personal friend of mine. Facing a painful medical crisis, she asked questions and carried out research that revealed options no one had told her about. By becoming an e-patient, she’s changed her future.
And what fascinates me, as we plan the new world of participatory medicine, is this: How does this awakening happen? What are the pivotal moments?
I met Elyse Chapman almost twenty years ago, on CompuServe’s Desktop Publishing Forum. In a very real sense, that was an online empowerment community: rather than taking the often-inadequate answers provided by software vendors, “we the people” banded together to talk about what WE needed to know.
A few years later Elyse and I met at a desktop publishing convention, where we cut costs: I shared a suite with Elyse and her husband Bruce. They lived near LA. Eight years ago they adopted their son Ben and four years later moved to Iowa.
Last August, Bruce was driving artwork to the printer at 6 a.m. for Elyse’s employer when over the hill came a pickup truck on the wrong side of the yellow line. He died instantly. Elyse is now sole support for herself and Ben.
Last month, experiencing extreme, out-of-the-ordinary cramps, she learned she had a large abdominal mass and would need a hysterectomy, major surgery that would require 6-7 weeks out of work. A strong woman (good Midwestern stock), she was willing to do whatever she needed to medically: she can handle it. The original finding was a 4″ mass, requiring open surgery since the docs said there was no way to tell whether they’d find cancer.
Elyse is familiar with my story and asked that fateful question faced by people with a critical diagnosis: “Where do I start?” She wanted to explore her options.
Fully supporting whatever her choice would be, I let her know about my own kidney surgery, in which a kidney with two large protruding tumors (attached to surrounding tissue) was removed through small slits, not the “open” nephrectomy that would have required 5-6 weeks recovery, like her proposed open hysterectomy. I asked if she’d like to explore such options.
While never once questioning her medical team, she agreed that would be good: not only is she sole support for her family, she’s a principal source of income for the small business that employs her.
Charlie Smith, M.D., is a member of our working group, and volunteered to talk to her. Charlie writes for the eDocAmerica blog, and he was “Doc Tom” Ferguson’s own physician, during the time when Tom was an e-patient himself, collecting extraordinary information that led to his outlasting his multiple myeloma prognosis by more than a decade.
As Elyse’s story unfolded in the next two weeks, I watched closely: it was my first opportunity to witness the birth of an e-patient, before my eyes. And as it unfolded, I experienced wonder and then joy at the process.
Later this week I’ll offer my thoughts. But first, here’s the post Charlie co-authored with Elyse on his blog. Please read and ask yourself, what’s unusual about this story? What happened here? What moments of realization occurred? What altered the outcome?
A Patient with a Uterine Mass:
The Case for Becoming an e-Patient
This article was co-authored by Elyse Chapman, who became an e-patient through the following process:
I recently became acquainted with a woman in Iowa, Elyse Chapman, who was concerned about her “fibroids”. Elyse was scheduled for a hysterectomy because of a very large, mass, probably a uterine fibroid, a benign but often problematic tumor of the smooth muscle fibers of the uterus. She had problems with excessive painful cramping, bladder pressure and a sensation of swelling and bloating in her abdomen.
A CT scan was ordered and showed a mass either on the ovary or uterus. The mass was so large that her doctors wanted to make sure that this was not a malignant tumor of the uterus or ovary. They had scheduled a total hysterectomy via exploratory laparotomy in 3 weeks and Dave was “consulting” with his online friends to see if anyone knew of a patient group with whom she could collaborate to see if there was an alternative to major surgery.
I volunteered to help. Shortly thereafter, I received an e-mail from Elyse and then gave her a call. I heard more details about her history, learned that she had lost her husband recently, and as a single parent, felt very shaky about the prospects of recovering from major surgery without help at home. She wondered why her doctors were so focused on performing a total hysterectomy and why she wouldn’t be a candidate for a laparoscopic approach. She also wondered if she really even needed to undergo surgery now, or could she safely wait and watch for a time.
Unable to determine for certain that an alternative approach was feasible in her case, I encouraged her, at the very least, to become more assertive about getting answers to her questions: If she wasn’t a candidate for laparoscopy, why not? I told her I’d do some further research about this and get back in touch with her. I looked this up on the internet and then sent her this e-mail:
I looked at some sites on laparoscopic hysterectomy. Here is one I thought was good:http://www.ohanlan.com/laparoscop.htm From what I can tell, it should be possible to remove even a large uterine mass via laparoscopy.Good luck getting an answer on this that makes sense to you. Let me know if I can help any further.
Elyse communicated directly with a nurse at the above site and it bolstered her belief that it may not be necessary to undergo a total abdominal hysterectomy. She communicated this to her doctors in Iowa who were still uncomfortable exploring alternative options. So, she sent me the following e-mail:
Charlie, have you heard of this — nuking the fibroid with ultrasound while using MRI to view and target the waves? Just learned of it today. Seems to me that U of I is wanting to just yank everything out even though there’s no proof that this growth is malignant. Sounds to my laywoman’s brain like at very worst there’s a 50-50 chance of malignancy, yet they do not want to do a biopsy for fear of rupturing something that might be ovarian and malignant, causing easy spread of malignant cells.
What I don’t understand is how anyone can determine if it’s malignant without a biopsy, but obviously someone knows how to do that, because links in the above results say the ultrasound procedure works well for non malignant fibroids, which means that somehow there’s a way to determine malignancy or no without too much fuss. U of I insists that there is no better imaging method than the CT scan I had, but at least some of the above links state that MRI is better. Huh?? Who is right? Is this a case of “we only know how to use a hammer, so everything we see must be a nail” or maybe “we’re financially invested in [name your imaging method of choice], so we’re going to use and promote that”? Thoughts, please?
Well, truthfully, I had not heard of this technique, so I did some additional research and found that the number of sites offering the procedure were limited, but sent these to her, with some additional links from the internet. In addition, this e-mail string reminded me that an increasing number of doctors and patients are opting for uterine artery embolization. I mentioned this, and she e-mailed me back that she was unable to find links for this procedure that I mentioned.
Here is my reply to her:
I should have used the “correct” term: uterine artery embolization.
This is another very reasonable alternative for you to consider, maybe even more realistic than the ultrasound approach.
After several more fax and phone exchanges between Elyse and the above physician in California, and phone exchanges with the physicians in Iowa, Elyse underwent an ultrasound examination that confirmed a large, single uterine fibroid about 6 or 7 cm in diameter. The Gynecologist/Oncologist in California felt that surgery was entirely optional at this point, noting that Elyse would likely experience shrinkage of the mass following menopause within a few years.
She is still in the process of finalizing her decision whether to proceed with a laparoscopic hysterectomy or take the “watch and wait” approach but is certain of one thing: she is NOT going to proceed with the scheduled total abdominal hysterectomy.
So, that is where we stand. But, what is the point? Well, the HUGE point is, Elyse is no longer content to blindly follow her doctor’s suggestions. Whereas they suggested she undergo a major surgical procedure, they didn’t even mention two significant new, less invasive procedures that might well be appropriate for her to consider, and did not give her clear information to consider the option of just watching and waiting.
The other point of the story is that a wealth of information is available on the web, but patients often need encouragement to seek it, and help interpreting it and applying it to their own situations. Peer support groups on line are one way to accomplish this and finding an interested, available physician to serve as an “e-patient advisor” is another way.
Either way, it is a good example of how patients are moving into the e-patient revolution and, through this process, the health care system is changing. In the meantime, join me in hoping Elyse soon finds the perfect solution for herself and has a great outcome.
So there you have it. Clearly, Elyse took matters into her own hands, even though she was prepared to do whatever her docs told her was necessary.
What do you see in this story? What happens in the awakening of an e-patient?
My thoughts (and a sequel) later this week. First, your turn: Discuss.