Building Trust in a Defensive Environment
Sunday, January 16, 2011 at 7:02PM
By Jill Arnold and Henry Dorn, MD
In an era in which fear of litigation often dictates the treatment a patient receives, is it possible to build trust in the patient-provider relationship?
In addition to wanting basic patient rights, informed if not enthusiastic consent and fair, non-discriminatory care, here is a list of what pregnant and laboring women need their care providers to know.
Please convey risk to me in a realistic manner. Have percentages on-hand so I can make an educated decision, or follow up to make sure I have the information. “It’s dangerous” or “it’s safe” means nothing.
Ask me first. Always. Don’t assume you have my consent. I know it might slow down your system but no harm can come from giving a calm, general explanation of things you are doing.
Accept that I might read books and access information on the internet in an attempt to understand what you are saying. If I refer to this information in an appointment, I’m not trying to insult you.
If I express a preference for a vaginal birth after cesarean, vaginal birth or elective primary cesarean early on in pregnancy, please let me know right away if I should find a new care provider. You can save us both a lot of headaches in the last few weeks of pregnancy if you are honest up front.
Childbirth has always been and will always be a high-stakes event to be taken seriously. Ultimately, we all share the goal of healthy baby, healthy mother. I understand that even with the best technology, diagnostics, training and skills (or by not employing certain technology with the same goal of minimizing harm or risk) there is a chance that something can go wrong and I or my baby could end up injured or dead.
Trust goes both ways. I want to trust that you’re doing everything for a reason and that the reason is moves us toward the goal of healthy mother, healthy baby.
As the other half of this relationship, your provider has their own set of things they would like you to know.
Patients should understand that doctors (and midwives) are balancing many concerns, including significant medico-legal ones, which this series of posts has demonstrated. Expressing your understanding of this to your caregiver goes a long way towards opening up communication.
Financial incentives are actually pretty low on our list of reasons to do a c-section, despite many people’s perception. Fear of the uncontrollable ranks highest for most OBs.
Patients need to find a caregiver that they can communicate with and advocate for themselves. Use local networks and ask others for recommendations of good providers, and find out why they recommend a provider.
Natural childbirth advocates need to realize that medical interventions do have their role and save lives, when used appropriately and judiciously. It is appropriate to question their use, particularly if invasive, but be willing to accept their value in certain situations.
Be a constituent and let your representative know what you want, not just how you feel about current legislation. We will not get true reform unless there is a perceived mandate from the voting public to make changes.
Keep an open mind. If you want to make “Mother Nature” laugh, make a plan.
Patient advocacy rhetoric is historically insensitive to the burden borne by the physician, with physicians demonized as overtreating, overtesting, trying to impose their will on the patient, or in many cases, withholding needed or wanted tests from patients. These suspicions originate from a single seed—the feeling of not being heard and of not working together.
Although heavily marketed throughout the 20th century, the paternalistic model of medical care is no longer as prevalent, falling by the wayside as a result of various social movements which emphasized the rights and autonomy of the patient or consumer. The internet has made previously hard-to-find information accessible to the non-practitioner, opening up new opportunities for personal responsibility, accountability and informed decision-making.
The Participatory Medicine movement has emerged as a recent example of democratized health care in which the role of the patient shifts from that of “mere passenger” to “responsible driver” of their own health, according to the Society for Participatory Medicine’s web site.
Medical recommendations are not made in a vacuum and will always reflect the dominant culture’s values, such as risk aversion, valuation of technology and social hierarchy. At the end of the day, the two most important stakeholders in our health care system—the patient and the care provider—will benefit from understanding their shared responsibility in defining what they would like the system to accomplish.
Jill Arnold is an activist, aspiring public health researcher and founder of TheUnnecesarean.com
Henry Dorn, MD, is an OB-GYN who currently practices in High Point, NC. www.drdorn.com
Reader Comments (18)
One of the many reasons trust is so important in birth is because decisions often have to be made when the patient is not necessarily thinking clearly. I can't imagine thinking too clearly in labor, and it was hard for my husband too, even though he wasn't experiencing any of the physical pain (obviously). During birth #1, our "plan" was derailed by a more-difficult-than-expected labor followed by being stalled 7 cm for six hours or so. The midwife recommended an epidural when I was rounding into my 21st or 22nd hour of labor. We didn't have a very strong relationship with her because she wasn't the midwife we'd happened to have seen for the majority of my prenatal appointments. But we trusted her. We trusted her because we knew that as a midwife in a birth center she shared many of our birth philosophies (we knew she'd had an unmedicated water birth, for example), but moreover she was very respectful, laid out her case, and did not push us. She said we could wait, there was no rush, and she gave us time and privacy to make a decision. We also trusted her because what she recommended corresponded with what we knew in our guts, even though we were both hesitant and afraid of the epidural. I wish my labor had gone differently, but I never doubted that by the time she recommended it, I did need that epidural.
I would say that I'm quite inclined to be trusting of medical professionals and to follow their advice. I'm also very middle-of-the-road when it comes to perceptions of risk (ie I am risk-adverse, and perhaps more inclined than not to see risk in a situation). It is only in obstetrics that I find myself fearful, skeptical, and critical (though I have never been skeptical and critical of my own, carefully-chosen providers).
I think what I'm trying to say is that trust (from a patient's perspective) derives from the feeling of being listened to, having your concerns taken seriously, and being treated with respect. I wonder if childbirth is particularly loaded because it's one of the new medical situations in which the patient can make decisions mid-event, whereas in most other situations the decision making happens ahead of time (whether or have a certain procedure).
Just wanted to say kudos to Jill, Dr. Dorn, and all the contributors for this excellent series; it really has been awesome to read these discussions.
I just want to comment on this:
"Fear of the uncontrollable ranks highest for most OBs."
I can understand that. Now, think of how fear of the uncontrollable manifests in a woman who is completely ignored while refusing an intervention, or whose consent is taken for granted to the point that it isn't even asked for, when someone shoves something (hand, monitor - whatever) up her vagina. There is nothing in my life that feels as unsafe and as out of my control as being in the hospital. I wouldn't wish a hospital birth on my worst enemy (unless she really wants that experience, of course)...and mine haven't even been that bad, compared to what some have been through.
I find the underlying arrogance behind this "reason" absolutely infuriating. A c-sections isn't controllable, either - more controllable than a labour and vaginal birth? Probably. Controllable? No.
Oh - and I know very few NCB advocates who believe that *all* medical interventions are wrong.
I'm in Canada, not in the US. Some of the details are different here. But, there is nothing the medical profession can do at this point in my life (I'm in my early 40s) that will cause me to ever actually trust a medical doctor again. I've come to believe that the underlying causes are systemic, not individual, so I can't even trust the good ones.
I don't think controllable refers to things like cesarean, or controlling the patient vs allowing the patient control in the above example - more the fear that no matter what you do, to some extent, the outcome is not controllable. While we can intellectualize that all we want, and understand statistics and risks, etc, to some extent, when I'm attending in labor I always know I'm not in control and something bad could happen. I don't sit around worrying about getting sued - it's not something that I really even think about (and this may be because I'm a family doc and not an OB and my experience and those of my peers and colleagues is a little different) but I do live in fear of doing something, or allowing something to happen, that causes a terrible outcome. I'm fully aware every minute that lives are on the line when I'm trying to make good decisions. Let me say to be clear, that I am a huge proponent of autonomy, that I prefer whenever possible to be merely consultant and advisor, and that ideally the responsibility lies with the client for decision making, and that I respect every woman's right to bodily integrity in all life situations. I'm not saying it's okay to take one little bit of that away from a client for the sake of my fear of the uncontrollable. But, since it's rare that I attend someone who has the same medical knowledge as myself, it's true that I am frequently responsible for giving my best advice which my clients then use to make decisions, and I never forget that either I could be wrong, or that something can happen that I didn't have a way of predicting. To me, that's what the uncontrollable means. On the one hand, you can say that it's the clients decision, and their outcome, and therefore I shouldn't allow my worries in to the equation, but I think I'd be a pretty terrible birth attendant, and even human being, if I didn't care about the outcome. I don't ever think my worrying trumps the client's right to make whatever decision is best for them, but sometimes I am still worrying! I don't know that I'm expressing myself very well, because I don't want to convey that I live in fear, or that I am making decisions all the time from a place of fear - just that as a birth attendant with a lot of experience at this point, I know that some things are out of my control, and since lives are at stake, that can be scary, and I understand why some providers seek to get control of a situation that feels like it is veering off in the wrong decision.
Dr. Dorn, and Jill, thanks for a great blog post. I agree wholeheartedly with everything above.
By "uncontrollable" I was referring to situations such as a prolonged shoulder dystocia or acute intrapartum hemorrhage where you see a life slipping away despite your efforts. Physicians have all experienced this at some point, and it can't help but change how we practice or view risk. C Sections can also become uncontrollable, however as surgeons we feel that in almost all cases if there is bleeding we can stop it (knowing too that sometimes we can't).
Having spent years reading women's stories and talking with patients about their experiences, I have a sense of the lack of control they feel in the hospital or under health care in general. Helping patients to regain this control is what my practice and this series is all about.
My point was simply to convey what I feel we as physicians fear and what motivates us, and how that might affect our recommendations or management, so that patients can address this more directly with their caregivers.
I am sorry that Lisa has been so hurt by our profession, but appreciate her and others' comments on this issue, which help those of us who read them to become better doctors and hopefully spare others her experience.
Dr. Dorn's comment reminded me that I wanted to say something similar to Lisa. I "know" you from somewhere else and your comments on your experiences have always been helpful to me, and I think help me be more sensitive to my own clients. In particular, trying never to be dismissive of what someone tells me their experience actually is - not what it appears to be to me, or what I think it "should" be. I'm sorry all that ever happened to you - but know that hearing about it does at least make a few of us think about what we should do differently.
Thank you both. I'll also mention that doctorjen (I recognize you, too!) and you, Dr. Dorn (from what I've seen here at the unnecesarean over the last few days) both fall into the category of "the good ones" I mentioned in my other post. When and if a doctor is necessary in my life, I definitely do look for the ones who think like the two of you...but I'm still not what I'd call "trusting". *sigh*
Love the post but I would like to chime in that this did not work for me. I tried to tell them my needs up front about VBAC and that I was knowledgeable, that I needed specific information if they had issues, etc. I also mentioned the need for mutual trust and respect. I still got the bait and switch and I was never treated like part of the team. I was met with hostility. Some providers can recognize when a patient is making an honest appeal for their support and open communication, some still choose to operate in an untrustworthy manner. Even with best efforts it doesn't always work, and that is sad.
I wanted to first of all echo the sentiments of many of the others who commented - this series of posts have been fantastic. Truly the most informed and intelligent discussion I've read in awhile. I'm such a nerd that one of my first thoughts was 'hey, Jill et al should be publishing these articles in academic journals' (which would be awesome) but I have a feeling that this website probably generates just as much traffic (if not more) than some of those journals. Congratulations to everyone who contributed to such strong posts.
I was also wondering....is there any literature or numbers or even anecdotal info about continuity of care for women in the US system - by that I mean, do the majority of women see the same provider during labour/birth that they've seen throughout their pregnancy? Even among low-risk women? I'm not necessarily talking about women who are referred during pregnancy or labour from a family doc to an obstetrician for whatever reason. In Canada (where I live), it's not uncommon to be part of a call group - making appointments to see one provider throughout your pregnancy but then only have a 1 in 8 chance (for example) to have that same provider when you're in labour, even if everyone in the call group is a gp or an fp. I'm so fascinated by this part of care (the relationship between patient and provider) and I think it's the critical piece that influences so many decisions during the birth process. Often I think too much focus is on the provider type - and not on the relationship. Hard to measure on a large scale or using large administrative datasets, but would make for a great qualitative study. Anyone interested?
Romy, that means a lot coming from one of my public health heroes. I'm not sure about continuity of care but will look into it. Let me know when you want me to put out a call for subjects.
@Lisa
I know it is frequently easier said than done, but my recommendation here is to vote with your feet, and let them know why you are leaving, as politically as possible.
It may be well worth your time to look outside of your community and travel an hour for great care, which unfortunately may be the case.
Romy, that's the situation in the US much of the time, too. In fact my ICAN list is filled with worried pregnant women who feel good about one OB in a practice but are fearful of getting one of the non-supportive OBs when they start labor for a VBAC. I would say that in combination with a fear of hostile nursing staff/hospital protocol, it drives at least some women to homebirth and/or midwives--the risk of having the baby before she gets there is not as fearful as the risk of being at the mercy of an OB you don't trust.
The practice I had my c/s at was a certified nurse midwife practice but followed the same model, and I often wonder how it would have gone if I had ended up with one of the two more supportive midwives there.
I had such a similar experience, Emjaybee. Saw the same family doc throughout pregnancy - she was great. She knew me, knew my husband, we had discussed so many things in passing that weren't written down and I felt we had built a good relationship over my pregnancy. Labour strikes and boom, she's on vacation. The family doc I ended up with I actually knew professionally and instantly knew she was the 'wrong' doctor for me. I wish I had had more...ahem...balls at the time to say I wanted someone different (although I'm not sure that was even possible). My labour was a bit disjointed and she disagreed with some of my desires and the nurses so she literally was never around. At 10 cm and after the realization that my baby was asynclitic, she literally lifted her hands up and said 'no way I'm touching this as a vaginal delivery'. Gong show indeed.
Anyhow, I totally hijacked this awesome post with a personal story but I really do think the relationship is the crucial thing. The relationship you have with whatever care provider you choose (although choice is a complicated issue too) is so different than trying to discuss things while you are in the heart of labour. Decision making is very different then, of course. Love the qualitative study idea but would also be interesting to somehow overlay policy/practice changes that altered the continuum of care through pregnancy onto increasing intervention rates including c-sections.
Interesting idea for the continuity of care study, although it seems like it would be challenging to lay out the data retrospectively (at least in the U.S.) because so much else has been going on at the same time. Running a quick google scholar search, in looks like the RCTs and reviews on continuity of care in pregnancy/birth ended up veering off towards comparing midwifery care to physician care because the midwives were the ones doing the continuous care. Thinking about it, I wonder if an RCT of continuous vs. non-continuous physician care wouldn't actually be that hard to design, given the phenomenon of these large practice groups. In some of those practices it seems like the patient sees the same provider for all their prenatal visits, but has only a 1 in 4 (or 8, or 10) chance that that person will be there when they arrive to have the baby. (Sometimes there is an effort to have one visit with each of the other docs, but the majority of the care/discussion takes place with the primary doc). The advantage here is that the randomization is already built into the system. (You'd have to account for practices like women lining up to get induced before their primary provider goes on vacation.) You could compare the outcomes of the people who happen to get their primary provider in labor, vs. those who happen to get someone else. I think the question would need to be whether the outcomes are significantly different in any direction, to account for the fact that individual providers may have different practice patterns. It would also be helpful to compare practices that deliver at different hospitals... for example, if one hospital has stricter institutional guidelines or a more cohesive culture, there may be less variance between providers than a place where everyone's on their own and doing their own thing.
OK, who's got thousands of dollars to throw around and would like to fund this? ;-)
Rebecca,
We haven't met, but wow do you speak a language I love. I wish I had access to money - I would love to work on a study like the one you've outlined. Wouldn't it be so interesting?
We are definitely on to something here. Definitely.
Hmmm....
@ Rebecca: It's worth considering also that not all midwives provide continuous care, though that's a common model (especially for CPMs). My CMN worked in a practice with other midwives and an OB and one had no choice in who attended the birth. Just about days and schedules. We got the midwife we'd had the least exposure to, who was a virtual stranger to us. I bet that's not unusual for hospital-practicing midwives
Rebecca, That's what NIH grants are for, right?! It would be great to present this research to tribal OBs and say THIS IS UNETHICAL! The OBs in our community practice in a large call group. I didn't realize that before I signed up with my OB for my twins' pregnancy that he doesn't see patients on Fridays (and is not accessible should you have a problem/question on Friday) and takes a week-long vacation every month of the summer. I ended up with an OB who has a decent reputation, but there's still the "what if."
This has been such a fantastic series, and this article is the icing on the top. I think the only thing missing is the issue of gender subversion and the female body being a battle ground over which patriarchal medicine and patient-informed care models is being fought. I have a much easier time questioning surgical inverventions suggested for other parts of my body than I do in questioning any number of non-evidence-based interventions suggested for my female parts.
KUDOS, Jill! I agree that not only we consumers should be reading this series but also MORE public health officials and care providers. So, Jill, all you need to do is find funding to publish this series as a booklet that will be sent to every CP office in the US. =)
Yup, we are on to something. NIH here we come!