Friday, December 2, 2011

Open Thread: What Do You Want To Tell Caregivers?

I'm speaking next week to a group of midwives (and possibly some doctors) about caring for women of size.

I'll be presenting lots of facts and figures and discussing research studies, but I'm also there to represent the voice of consumers, specifically of women of size.

So what in particular do you think is most important for these caregivers to know about caring for women of size?  How do you want to be treated? How do you not want to be treated?

How should caregivers responsibly discuss risk with women of size?  How can they improve outcomes in women of size? What do you most wish you could say to your own caregivers about the care you received during your pregnancies (or if you were to have one)?  About your gynecological care?  What constitutes good care in women of size?

This is an open thread; please feel free to add your comments.  However, remember that caregivers will be reading this thread in the future and we want to promote constructive dialogue about improving care in women of size.  Please keep comments constructive and helpful, even as you make the points you feel need to be made.

I hope this will generate some interesting dialogue and give some thought-provoking feedback to caregivers.

*P.S. Logistical note: For those who no means am I done with the PCOS series.  It just went on hiatus for a bit while I worked on some major deadlines on other projects.  It will be a periodic series. Stay tuned!


Janie said...

Don't assume anything about my health habits, don't criticize my diet or exercise habits when you have not ask nicely what they are.
Don't suggest arbitrary weight loss goals (50 lbs. seems to always be the favorite).
Actually please don't suggest any at all! I had a perfectly excellent pregnancy and delivery but was still instructed to lose weight before I dare become pregnant again. The vague - "you made it this time, but next time..... you won't be so lucky."
I always want to be treated as a person who just happens to be fat. Same as you would treat a person who happens to be tall. Not as a "FAT person".

and... other fat caregivers are sometimes the worst - Navelgazing midwife comes to mind right off the bat. Those who have not embraced HAES and take out their years of self loathing on you because they feel they have license because they are fat too and think they understand your life as well as you do.

My body, my life - it deserves respect especially if I am paying you.

Ashley said...

I'm not a woman of size, but I have been a volunteer caregiver at a hospital, and when caring for women of size, our hospital had room and comfort issues with wheelchairs, doorway space, and beds. Obviously is is often something that is not within direct control of the caregivers, but a lot of hospitals and nursing homes need to start making sure they have the utilities to accommodate larger patients.

Ashley said...

Also, I forgot to mention, good luck with your meeting!

Cassandra said...

Just because the medical establishment says fat women are high risk doesn't mean they actually are. Fatness isn't a risk. So until a fat woman presents with a real problem, don't refuse treatment.

Just because I'm fat doesn't mean I have a gargantuan vagina. Please don't stick the XL speculum in there until you've ruled out the use of the smaller one. Despite being 6' 350lbs, I actually have a rather small, sensitive vagina and I'm now terrified of getting a pap smear because of overzealous cramming of big specs.

Make absolutely certain that you have a WIDE range of blood pressure cuffs at your diposal. Educate yourself on all the things that affect blood pressure and make sure you are always taking it as accurately as possible. Your mistake could mean a c-section for a fat mother forced to go to the hospital for high blood pressure.

Educate yourself on the exra difficulties fat women have with breastfeeding, whether it be a big belly problem or a big breast problem, or both. Just because a woman has large breasts, don't assume she can make enough milk. Screen your clients for Insufficient Glandular Tissue as early in pregnancy as possible.

Always remember that you are working with a human being first and foremost, not a sentient blob of adipose tissue. Do not treat fat women with any less sensitivity and care than you would an average woman. The most important thing you can do as a care provider is to not treat fat women any differently than anyone else. You change your care style to suit each individual's needs. Everyone has their own issues and what one fat woman wants, another fat woman might not want. You can't assume everyone wants to be treated the same way.

Anonymous said...

I would say: "Please treat me like a person." I had a doctor appointment where the doctor blatantly refused to use my name; instead she would say only "someone your size . . . "

KellyK said...

The main thing is to be both realistic and compassionate. Don't try to scare me into doing what you think I should do, but do give me an honest assessment of risks. Respect is also a really big deal. Please don't talk down to me or lecture me.

Janeen said...

NOT tell her she should consider breast reduction surgery while doing my breast exam at my six week post partum check-up, especially if she is a nursing mom!

NOT go ranting and raving about how a VBAC is dangerous for a super obese woman because her fatness means that it could take five minutes longer to take the baby out if something goes wrong and the baby could DIE and doing it in such a way that basically implies that the woman is putting her baby's life in danger for even considering having a VBAC.

That's just two from my own experiences!

nsv said...

When I come to you for pre-conception planning, please don't jump to the conclusion that it's all about my weight. (In my case, my question was in fact on a genetic issue concerning my husband!) Don't immediately advise me that I'll never get pregnant at my weight. I did, by the way - repeatedly!

Sim said...

Please don't make me labour and give birth lying on my back just because I am fat and you think I need constant monitoring.

Some larger sized gowns and disposable undies would be great too, nothing worse than walking around with bits of butt sticking out the back!

Apart from that I actually had awesome caregivers and I have to say, it makes a huge difference when the medical profession treats you like a normal human being with all the normal risks. Doctors respected my wishes not to be weighed, the dietician I had to see when I got gestational diabetes believed me when I described my diet and all but one midwife treated me with respect. I was terrified of how I would be treated because of my weight, and the reality was SO much better than I had feared, and I have complicated pregnancies so that's saying something!

Two Voices Publishing said...

Use common sense when discussion pregnancy nutrition - and keep nutrition - not weight loss - in the forefront. Expecting a woman to lose weight while pregnant is ridiculous and probably does more harm to her and her baby than good.

When a was a [relatively] thin 180, my OB told me I should eat NOTHING but steamed vegetables while pregnant, not even fruit. I laughed at her, gained 30 pounds and had a perfectly healthy baby.

Anonymous said...

Recognize that for some women the weigh-in is stress-inducing. It never occurred to me to stand backwards until I was full of anxiety and searched for info on coping with it. Post a non-judgmental sign noting that you can face the other way if you prefer not to see or hear your weight - and then have your staff respect that preference. Recognize that for some the weigh-in is so anxiety-inducing that it may discourage office visits or result in a BP spike when you take the blood pressure immediately before or after the weigh-in.

Anonymous said...

I am not seven and you are not my mother. I am an adult who is free to make my own decisions. It is not your job to lecture me until I obey.

Do not assume I'm lying. I know it can be an easy way to explain the discrepancy between what medical science tells you, and what I tell you, but it's also really rude.

Speaking of things that are really rude, please don't assume I am massively ignorant and need the most basic aspects of health to me.

Keep in mind that there is a difference between "Statistically, patients who have X are more likely to also develop Y" and "Every single patient who has X is doomed to develop Y unless they make themselves not X".

Also, keep in mind that it is possible for someone to be fat and have health issues that are not related to their weight and would not be cured by thinness.

You know how diets have a high failure rate, and are more likely to lead to long-term weight increases than long-term weight loss? Think about what that means. No, not "Fat people are bad and lazy and incorrigible", but "Every time you encourage dieting, you are encouraging a risky treatment with a high probability of making the problem worse."

One and Doll said...

Almost all heavy women have had bad experiences with healthcare providers at one point or another. The fact that they are seeking care is a big ordeal for many of them. They expect to be shamed and humiliated. countering that experience is deeply important.

And a reminder that just because this is your job...remember that this is my life...treat ME like a PERSON. With the dignity people deserve.

Mandi said...

Don't assume that just because I'm 100lbs overweight that I am automatically guaranteed to have diabetes, gestational or otherwise. I passed the 1 hour screening with both of my children and never had to take the 3 hour test, despite an endocrinologist trying to put me on an insulin pump at 4 months because I was apparently, in his eyes, suffering from PHANTOM diabetes.

ASK me about my diet and exercise habits instead of automatically assuming that at 5'7" and 275lbs I must be a completely sedentary Little Debbie addict.

Be aggressive about monitoring thyroid hormone. Since the insulin pump incident, I switched to a new endocrinologist who agreed to treat me as a human and not as a weight, and said that based on my bloodwork and the fact that I got pregnant twice without metformin or other fertility drugs that I probably don't have PCOS after all, but just bad hypothyroidism. She has kept my thyroid at the high end of normal this time around and it's made such a huge difference in how I feel and how my weight gain has been.

I second the larger hospital gowns. When I checked in to have an induction with my first, they gave me a teensy little gown that was supposed to open in the front and didn't even close over my breasts. I wore my own nightgown until they coughed up something that would COVER me.

Anonymous said...

I wish doctors knew how much they diminish their own authority, and my faith in them, by spouting information that's based on "common knowledge" and not actual medical research.

I am not a doctor. When I go in to see one, I want to benefit from that person's expertise that I don't have. When it becomes clear that I know much more about the science of weight gain/loss/dieting/health than my doctor does, and yet that doctor continues to debate me, I get scared. If they're willing to argue these points based on bad information and no real research, how can I trust what they know in their specialty?

I think if doctors realized how foolish they make themselves look by doing the things that all the previous commenters have mentioned, they might think again.

Moose said...

If you can't treat me, talk to me or touch me without a look of disgust on your face, please just leave and do not come back. Maybe you should consider another career, while you're at it.

Andy Jo said...

Somewhat stream-of-consciousness...

Please tell me all of the side effects I may expect. For example, from surgery. If I should expect some kind of bleeding or discharge (and if this is more common in women of size) -- tell me.

Ask me how I am feeling. Ask me to describe the feelings in my body and when I have them; THEN (and only then) make some hypotheses and follow up with other questions. Don't just walk in the room, see my fat, and say "oh it's ____ because you are fat".

If you can't stand to look at me or see me, then please send another physician to provide service who will respect me and my dignity.

Don't assume I am deaf and cannot hear you (or if I am deaf that I can't otherwise understand what you say), or that I do not speak a language other than English. Don't talk about me in another language to another person in my presence -- I may very well understand you and the slurs you just used (has happened -- I speak 2 languages fluently, and 2 more less well).

Ask me first what brought me to you today. Don't look at me and assume it is _______ complaint associated with fat. Maybe I broke my leg. Maybe I have a cold. Maybe I have an ingrown toenail. Maybe I found a lump and am scared. Listen to what I say, and practice active listening to confirm your understanding of what I said.

Don't conclude the appointment with a diet, or a prescription for something that I may not have. If you suspect I may have (for example) diabetes, request a test. Don't prescribe without knowledge. Same with BP drugs. Same with Cholesterol drugs.


--Andy Jo--

Sara said...

Don't talk to me about my weight. Especially while palpating my uterus. If I am on my back with your hand inside me that is not the time to talk about my health habits. I would much rather you focus on palpating my organs!

When talking to large patients about their contraceptive options, know the weight cut-offs on the hormonal options. As the patient I shouldn't have to tell YOU that if a hormonal option only offers 99% efficacy up to 230lbs and I weigh 250lbs then it isn't going to be that effective for me.

For that matter, talk to me about my risks the same way you would my thinner friend. I know it's hard to believe, but I have just as much sex as my thin best friend. I have been miffed because a obgyn hasn't given me the safe sex lecture! When I was single, non-exclusive, and sleeping around I had just as much risk of contracting HIV, gonorrhea, warts, chlamydia, etc as anyone else and I deserved to know that.

By the same token, tell me the side effects of hormonal birth control. Tell me that side effects can develop with use. I was on a pill for 4 years and for the last 3-6 months of that I was crying all the time and had little interest in sex or being touched. My skin went to hell and was so sensitive that all touch tickled. Nothing in my life had changed. I thought I was losing my mind. On a whim, I googled my pill and discovered a whole forum of women with my exact symptoms. So I stopped taking that pill and it was a miracle! Within two weeks my mood began to brighten and after 4-6 weeks touch became bearable again.

S said...

The biggest problems I have had have been with care while trying to become pregnant. I had an OB tell me that the reason I wasn't becoming pregnant was "certainly" because I had PCOS since I was fat and put me on metformin without running any tests - later, we discovered that the problem was male factor and a PCOS screening indicated consistent ovulation, normal blood sugar, and low/normal androgen levels.

TheNerd'sWife said...

A few months ago, I went to an Endocrinologist. Giving him my symptoms, I pointed out that after I had given birth I lost 36 of the 45 pounds I had gained literally within the first day as an example of how bad my water retention could be...still looking down at his notepad, he congratulated me for losing the weight and to keep on going. WTF. No matter what doctor I see, no matter if my weight could even possibly be a freaking *symptom*, the fact that I'm large never ceases to be commented on before anything else. He tested me that day and the results came back a few weeks later that I was positive for Hashimotos and Hypothyroidism which can lead to unexplained weight gain, the bane of my existence that has always been blamed on 'poor eating', etc, by doctors and, thus, never tested until then... Here's a thought: maybe, just maybe, LISTEN TO YOUR PATIENTS and then, NO MATTER WHAT SIZE THAT PERSON MAY BE, TREAT THEM WITH RESPECT AND WITH THE SAME MEDICAL COURTESY YOU WOULD YOUR THIN PATIENTS...

Anonymous said...

Don't look at me, look at my weight on the chart, and then say "Wow! I never would have known you were THAT heavy." I happen to carry my 230lb (pre-pregnancy) well, but the previous statement is in no way a compliment!

KellyLynn0323 said...

As woman of size, a mother and a registered nurse, I have seen both sides of the fat-pregnant lady coin in the acute health care setting. Fortunately for me as an insider at the hospital when I had a cesarian for my son (he was transverse) I was treated very well. I believe part of my good care was because the nurses were awesome, and partly because I knew the doctor by first name as I took care of hundreds of his patients. Health care providers and workers treat you differently when they know you know stuff.

What I would like to tell caregivers from a patient's perspective is that it's important to treat the person in front of you like a person-with compassion, caring, understanding, and kindness. If you find yourself having feelings or opinions about the size, shape or looks of the person in front of you, keep them to yourself unless it's in the person's best health interest to share. And even then, share from your own experience, not what you think my experience will be based on your assessment of my appearance.

When people know that you know that you are overweight, that you are aware of the risks and the benfits of losing weight, they stop talking to you about it. Really. There is no way that a health care worker or provider thinks about my body more than I do, so keep that in mind when you want to have the weight-loss "come to Jesus" meeting with your patient. Instead, take a proactive, supportive approach to working with your patient when they are ready to make changes.

One last thing, please offer me the regular-size hospital gown. It fits, even if you don't think it does. Or even take a stab at offering choice of gown sizes, most-hospitals have more than one. As a nurse, this seems like a trivial thing to focus on. But it makes a world of difference to the patient who does not have a plethera of choices at the time. Offering a fat woman the choice of a gown size instead of immdeiately presenting her with something made by Omar the tent maker preserves dignity and gives the patient some semblance of control.

As caregivers, we have the responsiblity to make a difference one patient at time. Giving care does not include shaming, embarrasing, demeaning, insulting, or witholding care. It's easy to let your own personal feelings and opinions get in the way of giving care ( I know from personal experience) but when you are in the business of bringing new humans into the world, giving actual CARE should be top priority.

Jen said...

For those health care providers in the birthing industry. Don't assume that fat=a broken vagina. Yes bigger mummas to be know that there are risks with birth for them but they have vaginas that work just fine too and can birth babies, after all we managed to conceive while lovely round so we can birth while lovely and round too.

Jen said...

We are people too and while you may find issue with our fat we find even greater issue with rudeness.

And like any profession if we are paying for your services you work for us and must adjust YOURSELF to us, not the other way around. The same way you would for the elderly, children or people who are underweight.

Lisa R. Nelson, CWS said...

You know what guys? I do home births. I just don't deal with the misinformation, stress and anxiety.

I have seen hospital based midwife websites, and they risk you out if you are 300 lbs + before pregnancy. Dumb. There is no way of telling that you are higher risk, before you become higher risk. It's really stupid.

I go to my midwives, feel comfortable with my midwives. They treat me like any other patient. They do not assume I can't birth vaginally (although I have had 2 very successful and beautiful home births). I haven't had any miscarriages, no diabetes, no HBP. I work out, try to take care of myself and eat for baby (high protein, veggies, fruits and so forth).

My first birth was 29 hours (yes without meds) at home. I think that was partially due to a mal- positioned baby and partially due to not doing what to do. I pushed him out in an hour. My second was 4 hour labor (had some anxieties about post dating) and was out in like 10 minutes.

First baby 8 lbs 6 oz. Second 9 lbs 6 ounces. Both very very healthy. apgar scores 9 and 10.

Janie said...

Lisa you are lucky I was turned down by 4 homebirth midwives before finding one that would take me. And I loved her, but don't know what I would have done if she had been another to turn me down.

Jessi E. said...

I want them to know that my size bothers me A LOT so they need to be sensitive about that, but I also care about being informed about any special issues I might have... So I would prefer they not ignore those. I want to know what my issues will be, if any, and I want to be treated with respect.

Erin said...

Don't assume that I'm high risk because I am larger than your average patient. Don't assume that I live on Doritos and McDonalds - I probably eat healthier than your other patients. Don't assume that any health issues I have are caused by my weight - so far, none of them have been!

Anonymous said...

Please don't allow your first comment to me be that I won't be capable of continuing this pregnancy at my current size and therefore must lose weight for the sake of the baby. I have PCOS and have already lost 80+ pounds (338-265) before getting pregnant the first time and I'm still around 268 although I'm in the second trimester of this pregnancy. Even though it may be known to you as my provider that we lost the first one, please don't assume that my weight caused my cervix to be incompetent. Now that I'm pregnant with my second baby, don't attempt to scare me by using my weight to inform me that I may lose this baby if I don't change it or keep it the same. It's already nerve-wracking that I had a cerclage put in and will be facing the week and day that I lost the last child very soon. Your medical advise is always appreciated but it's not welcomed if you are just going to bash my weight and scare me about my pregnancy even further.

Anonymous said...

Someone said something similar but if I've lost weight, don't say "congrats" or "good job." Ask me if it was intentional. And if it wasn't don't assume that it was healthy anyway.

Anonymous said...

What I would like to tell caregivers:

"Would a doctor tell his/her patients to drink a glass of wine every day "to keep up the blood pressure" without ever worrying that a patient might have a history of drinking problems? Probably not.

Then please do not tell people to diet, either. Eating disorders are very common. No matter what you think about my weight, I will not go on a diet, because it took me a lot of work to get rid of my eating disorder. Telling people to diet might push them back into very unhealthy eating behaviour ..."

Anonymous said...

Take care of the client in front of you. Not the imaginary lazy stupid incompetent broken-down doomed one in your head.

If you tell me that I am going to fall victim to XYZ problem because I am fat, give me a citation to a peer-reviewed medical journal. Better yet, give me three.

And when I fail to fall victim to the scheduled Problem of Being Fat, the one you predicted (sans citation) would inevitably happen--how 'bout you put on your grown-up underpants and admit that you were wrong?

Jenny Islander

Anonymous said...

Like was posted earlier:
"I wish doctors knew how much they diminish their own authority, and my faith in them, by spouting information that's based on "common knowledge" and not actual medical research."

During my pregnancy, several doctors repeatedly spouted information that, upon careful examination, was not borne out by the research. If you cannot show statistical causality between obesity and disease, don't act like it's there.

Also, give credit where credit's due. On my first visit to the doctor, she told me not to gain any weight during my pregnancy and to eat carefully to avoid gestational diabetes. I did just that and gained no weight at all and kept my blood sugars within the normal range at all times. I never got even a pat on the back. Had I not done so, I would have been lectured at each appointment.

Anonymous said...

Don't assume I don't exercise because I weigh over 200 pounds. I played hockey 5 times a week, plus yoga 3 hours a week and ate well. Some of this is muscle if you took the time to notice.
Also, don't scare me with your statistics. When I tell you I don't want amnio, I don't want it. There is no outcome from your amnio that will cause me to terminate this pregnancy, so quit it. It changes nothing.
And consider that your fear mongering causes me great anxiety and near terror for 9 months which clearly is bad for my baby.