Saturday, December 5, 2009

A Pap Smear for Jennifer?

The fall semester is drawing / barrelling to a close, but I have another LEND tidbit to share -- another video from the online social work class in developmental disabilities.

This lecture was presented by Dr. Bill Schwab, a family practitioner and medical faculty member who is highly involved in physician education around disability issues. His lecture, though perhaps a decade or more old, has stood the test of time and has been one of the best segments in the course so far (and the course is almost done!) The lecture topic was issues in health care screening and preventative medicine for adults with disabilities. You can see this hour-long lecture for yourself -- it's free! -- at (You only need to watch Units 1-3; Unit 4 is a repeat of Unit 3, for some reason.)

The lecture raised issues that I haven't really had to think about yet, with Joy only five years old and all. But the years will fly by...

Dr. Schwab's lecture highlighted the story of "Jennifer," a 30 year old woman with Down Syndrome who became a patient of his. When she started coming to him, she had never had a gynecological exam or pap smear, and was very clear that she did not want any such thing to happen. She was in generally good health and had never been sexually active as far as anyone knew or she was willing/able to report. Dr. Schwab's initial approach, in consultation with Jennifer and the staff who accompanied her, involved a gradual getting-acquainted over a number of appointments, and indeed over the course of two years she became comfortable coming to the office, weighing in, having him listen to her heart and take blood pressure. She was still, however, not willing to do so much as lie down on the exam table.

After two years, she had a staffing change. The new staff who came in with her were of the opinion that here two years had gone by, the pap test still hadn't happened, it was time to get with the program and see that it got done.

Dr. Schwab opened the discussion to the audience: What possible approaches (right or wrong) might a physician take in this situation? The audience started firing off suggestions:

  • a more intensive patient-education approach
  • maybe Jennifer would be more comfortable with a female doctor
  • continue rapport-building
  • simply defer the pap test and not push
  • physical compulsion ("make" her do it)
  • change in setting
  • sedation (could be at various levels, up to general anesthesia)
  • has she been molested in the past? / seek relevant history
  • create a reward system
  • modify the screening regimen

They could have gone on.

Dr. Schwab then made a series of very interesting points, some of which you'll just have to see the lecture to pick up... but here are a few of them.

What is the goal for population participation in this screening test among people with intellectual disabilities? Are you trying to get 100% participation... or are you trying to approach the same participation rate as you get with neurotypical (NT) folks? Because there are plenty of NT women who choose not to get that screen. They just never make an appointment for it, or simply decline when asked, and nobody comes to physically compel or sedate them...

Among the values the physician has to weigh are the concepts of personal autonomy versus substituted judgment. With children, NT or otherwise, parents get to make a lot of decisions (no child is going to choose a vaccination or even to go to the doctor at all...) At the other end of life, if dementia or other incompetency comes in to play, there are procedures in place such that people who know the patient and know of their previously-expressed healthcare wishes can make decisions on their behalf. So then you have the question: at what level is substituted judgment appropriate with developmentally-delayed or intellectually disabled adults, who may express preferences counter to prevailing medical advice?

Part of the conversation around any particular screen has to include the effectiveness of early detection (will it help?), the efficacy of the test (how many of the whatever-it-is does it actually catch?), and the question of what the next step would be based on results one way of another. Of course, this conversation applies to NT decision-making too! (Witness the recent change in breast-cancer screening recommendations. Dr. Schwab actually used breast-cancer as an example, and his comments back then are not out of line with the latest recommendations.)

Dr. Schwab made some important observations about going down the road of compelling a patient to be screened against her wishes. What, for example, is the consequence to a woman when she may have been taught protective behaviors all her life around her "private parts" and then she experiences a violation of that in the doctor's office? What message do we send to a person if we promote the idea that people with disabilities have rights and thoughts and opinions that matter -- but not in the doctor's office? What message do we send to the community?

He also said that his experience with partial sedation in such situations has been poor. People who come in under sedation often feel more confused and worried than they already were, feeling even less in control and more abused than they already did.

It's important to be aware that there are modified versions of exams that can be done if the physician is trained and willing. Dr. Schwab described in some detail a modified pelvic exam that involves no stirrups, more reassurance and eye contact (rather than hiding impersonally behind a drape), and no speculum until/unless it's deemed acceptable at the very end of the exam.

The lecture was a little bit cut-and-pasted from its original form, and what's posted right now doesn't actually answer the question of what really did happen with Jennifer (to the extent that she's a real person and not partially hypothetical?) Based on the rest of the content, though, I think I might have a pretty good guess as to what direction the doctor would have been advocating for her.

I think that "Jennifer" and Dr. Schwab's other patients are fortunate people.


datri said...

The last time I went to the OB/GYN for my quarterly Depo shot, in the waiting room was a severely disabled young woman with two other women who I assumed to be aides by their demeanor. I don't know why she was seeing the doctor, if they were going to do an exam, but I was glad to see that our medical group has no issues with seeing the developmentally disabled.

JoyMama said...

datri - it's encouraging to see that she was there in the first place... the next big step that you can't tell from a waiting room, of course, is how quickly any given doctor in the group is inclined to push compulsion/sedation when such a young woman expresses a preference to decline a test or procedure. What a tricky thing to have to worry about, rights that NTs take for granted!

K said...

wowo never thought about this - interesting issue
how traumatic and invasive these procedures must feel if you don't understand the purpose
I wonder if the approach could be helped by helping the patient understand the purpose
Certainly for a child like R that would be the way I go
Regardless very good doctor and good topic to bring up

mama edge said...

As my boys near adulthood, I wonder when (if?) they will want autonomy in medical decision-making. And I wonder if I want to give it to them.

Good food for thought. Awesome doctor!

Kathy said...

Dr. Schwab is an excellent health care provider and our community is so fortunate that he educates many doctors in training (and the rest of us lay folk).

KT said...

As the stepmother of a 25-year old female with Down syndrome, this post is very timely for me. (Even though you wrote it a few years ago. :) My stepdaughter's mother brought her three times to get a GYN exam and none were successful. Her father and I are trying again with a GYN who sees many patients with Down syndrome and are hopeful it will work out. This post has made me start to wonder if getting the exam is as important as I originally thought. Looking forward to watching the lecture.

JoyMama said...

KT - it looks like the lecture is still online -- hope it's helpful for you!! I've had a number of occasions to talk with Dr. Schwab in person since I wrote this, and I remain deeply impressed by his commitment and insight. Best wishes to you whatever you (and your stepdaughter) decide.