HHS “Provider Conscience” Rule Puts Public Health in Danger

Jessica Arons

The right of conscience is a time-honored value in our society. But it is not only health providers who have rights; so do patients.

As expected, the Bush administration finalized its proposed "provider conscience" rule last week. Despite opposition from leading medical groups like the American Medical Association, the American College of Obstetricians and Gynecologists, and the American Hospital Association; from Senators, House members, and state attorneys general; from officials at the Equal Employment Opportunity Commission; and from over 200,000 individual commentators, the Health and Human Services Department pushed through a rule that expands the right of health care workers to refuse to provide medical care, counseling, referrals, and even information to an unprecedented level.

The rule is pernicious in many ways. It allows all employees, and even volunteers, of most institutions receiving HHS dollars to deny access to a wide variety of medical services. The rule ostensibly protects only employees who object to abortion and sterilization, but it is written so broadly that it could also apply to contraception, fertility treatments, HIV/AIDS services, gender reassignment, end-of-life care, or any other medical practice to which someone might have a personal moral (not even religious) objection.

This rule is not "just a woman’s issue," though the more than 17 million women who depend on our public health system and who are disproportionately low-income and women of color will certainly bear the largest brunt of this politically-motivated regulation. The rule also provides a striking example of how the stigmatization of one medical service-specifically, abortion-can quickly creep into other areas and erode well-established medical standards of care. Allowing medical services to be ranked on a scale of moral superiority is a public health problem.

The right of conscience is an important and time-honored value in our society and one that should not be tread upon lightly. But it is not only health providers who have rights; so do patients. Standards of care and codes of conduct exist to balance the rights of them both. Instead of pitting the rights of providers and patients against one another, perhaps there are a few tenets upon which we as a society can agree:

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  • Withholding relevant, medical information from patients is never good medical practice nor ethical;
  • In emergency situations, the patient’s medical needs must always come first;
  • Providers who are unwilling to provide certain services must give their patients timely notice of their refusal to do so and must refer those patients to a provider who can supply the needed health care.

 

Despite the fact that professional medical associations have consistently endorsed these precepts, the new HHS rule ignores all three of these basic yet essential codes. Fortunately, it is likely that the new administration and the new Congress will work to reverse this rule as quickly as possible. But this debate will not end with the demise of this rule, and we must not countenance some very dangerous concepts that have been advanced in support of the rule.

Requiring a health care provider to do his or her job is not discrimination. Employers are required to accommodate an employee’s religious beliefs when doing so does not present an undue hardship on the employer. However, refusal or withdrawal of health care in a manner that neglects a patient’s needs is an undue hardship and should not be entitled to accommodation.

Providing a referral for a service is not morally equivalent to providing that service yourself. There are varying degrees to which one’s conscience may be burdened by certain actions. Supplying information about where to find appropriate medical care ought not to tax one’s conscience to the same extent as performing a procedure or dispensing medication. Moral beliefs exist along a continuum and the protections afforded for such beliefs must be proportionate as well.

A refusal to provide care can harm patients. In our current health care system, we face a shortage of primary care physicians, a nursing shortage, a vast population of uninsured and underinsured patients, hospitals that cannot afford to stay open, and rural communities with few health care resources like clinics and pharmacies. Health care providers should not assume that just because they say no, a patient will be able to find another provider who will say yes who is also affordable and accessible.

The so-called "provider conscience" rule disrupts the careful balance established by medical codes of conduct and standards of care, placing the health, well-being, and dignity of patients at risk. We must work to ensure the proper balance is restored quickly, so that we can continue to protect the right of conscience while also protecting access to all health care services for every patient who needs them.

This article was first posted at Science Progress.

Culture & Conversation Maternity and Birthing

On ‘Commonsense Childbirth’: A Q&A With Midwife Jennie Joseph

Elizabeth Dawes Gay

Joseph founded a nonprofit, Commonsense Childbirth, in 1998 to inspire change in maternity care to better serve people of color. As a licensed midwife, Joseph seeks to transform how care is provided in a clinical setting.

This piece is published in collaboration with Echoing Ida, a Forward Together project.

Jennie Joseph’s philosophy is simple: Treat patients like the people they are. The British native has found this goes a long way when it comes to her midwifery practice and the health of Black mothers and babies.

In the United States, Black women are disproportionately affected by poor maternal and infant health outcomes. Black women are more likely to experience maternal and infant death, pregnancy-related illness, premature birth, low birth weight, and stillbirth. Beyond the data, personal accounts of Black women’s birthing experiences detail discrimination, mistreatment, and violation of basic human rights. Media like the new film, The American Dream, share the maternity experiences of Black women in their own voices.

A new generation of activists, advocates, and concerned medical professionals have mobilized across the country to improve Black maternal and infant health, including through the birth justice and reproductive justice movements.

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Joseph founded a nonprofit, Commonsense Childbirth, in 1998 to inspire change in maternity care to better serve people of color. As a licensed midwife, Joseph seeks to transform how care is provided in a clinical setting.

At her clinics, which are located in central Florida, a welcoming smile and a conversation mark the start of each patient visit. Having a dialogue with patients about their unique needs, desires, and circumstances is a practice Joseph said has contributed to her patients having “chunky,” healthy, full-term babies. Dialogue and care that centers the patient costs nothing, Joseph told Rewire in an interview earlier this summer.

Joseph also offers training to midwives, doulas, community health workers, and other professionals in culturally competent, patient-centered care through her Commonsense Childbirth School of Midwifery, which launched in 2009. And in 2015, Joseph launched the National Perinatal Task Force, a network of perinatal health-care and service providers who are committed to working in underserved communities in order to transform maternal health outcomes in the United States.

Rewire spoke with Joseph about her tireless work to improve maternal and perinatal health in the Black community.

Rewire: What motivates and drives you each day?

Jennie Joseph: I moved to the United States in 1989 [from the United Kingdom], and each year it becomes more and more apparent that to address the issues I care deeply about, I have to put action behind all the talk.

I’m particularly concerned about maternal and infant morbidity and mortality that plague communities of color and specifically African Americans. Most people don’t know that three to four times as many Black women die during pregnancy and childbirth in the United States than their white counterparts.

When I arrived in the United States, I had to start a home birth practice to be able to practice at all, and it was during that time that I realized very few people of color were accessing care that way. I learned about the disparities in maternal health around the same time, and I felt compelled to do something about it.

My motivation is based on the fact that what we do [at my clinic] works so well it’s almost unconscionable not to continue doing it. I feel driven and personally responsible because I’ve figured out that there are some very simple things that anyone can do to make an impact. It’s such a win-win. Everybody wins: patients, staff, communities, health-care agencies.

There are only a few of us attacking this aggressively, with few resources and without support. I’ve experienced so much frustration, anger, and resignation about the situation because I feel like this is not something that people in the field don’t know about. I know there have been some efforts, but with little results. There are simple and cost-effective things that can be done. Even small interventions can make such a tremendous a difference, and I don’t understand why we can’t have more support and more interest in moving the needle in a more effective way.

I give up sometimes. I get so frustrated. Emotions vie for time and energy, but those very same emotions force me to keep going. I feel a constant drive to be in action and to be practical in achieving and getting results.

Rewire: In your opinion, what are some barriers to progress on maternal health and how can they be overcome?

JJ: The solutions that have been generated are the same, year in and year out, but are not really solutions. [Health-care professionals and the industry] keep pushing money into a broken system, without recognizing where there are gaps and barriers, and we keep doing the same thing.

One solution that has not worked is the approach of hiring practitioners without a thought to whether the practitioner is really a match for the community that they are looking to serve. Additionally, there is the fact that the practitioner alone is not going to be able make much difference. There has to be a concerted effort to have the entire health-care team be willing to support the work. If the front desk and access points are not in tune with why we need to address this issue in a specific way, what happens typically is that people do not necessarily feel welcomed or supported or respected.

The world’s best practitioner could be sitting down the hall, but never actually see the patient because the patient leaves before they get assistance or before they even get to make an appointment. People get tired of being looked down upon, shamed, ignored, or perhaps not treated well. And people know which hospitals and practitioners provide competent care and which practices are culturally safe.

I would like to convince people to try something different, for real. One of those things is an open-door triage at all OB-GYN facilities, similar to an emergency room, so that all patients seeking maternity care are seen for a first visit no matter what.

Another thing would be for practitioners to provide patient-centered care for all patients regardless of their ability to pay.  You don’t have to have cultural competency training, you just have to listen and believe what the patients are telling you—period.

Practitioners also have a role in dismantling the institutionalized racism that is causing such harm. You don’t have to speak a specific language to be kind. You just have to think a little bit and put yourself in that person’s shoes. You have to understand she might be in fear for her baby’s health or her own health. You can smile. You can touch respectfully. You can make eye contact. You can find a real translator. You can do things if you choose to. Or you can stay in place in a system you know is broken, doing business as usual, and continue to feel bad doing the work you once loved.

Rewire: You emphasize patient-centered care. Why aren’t other providers doing the same, and how can they be convinced to provide this type of care?

JJ: I think that is the crux of the matter: the convincing part. One, it’s a shame that I have to go around convincing anyone about the benefits of patient-centered care. And two, the typical response from medical staff is “Yeah, but the cost. It’s expensive. The bureaucracy, the system …” There is no disagreement that this should be the gold standard of care but providers say their setup doesn’t allow for it or that it really wouldn’t work. Keep in mind that patient-centered care also means equitable care—the kind of care we all want for ourselves and our families.

One of the things we do at my practice (and that providers have the most resistance to) is that we see everyone for that initial visit. We’ve created a triage entry point to medical care but also to social support, financial triage, actual emotional support, and recognition and understanding for the patient that yes, you have a problem, but we are here to work with you to solve it.

All of those things get to happen because we offer the first visit, regardless of their ability to pay. In the absence of that opportunity, the barrier to quality care itself is so detrimental: It’s literally a matter of life and death.

Rewire: How do you cover the cost of the first visit if someone cannot pay?

JJ: If we have a grant, we use those funds to help us pay our overhead. If we don’t, we wait until we have the women on Medicaid and try to do back-billing on those visits. If the patient doesn’t have Medicaid, we use the funds we earn from delivering babies of mothers who do have insurance and can pay the full price.

Rewire: You’ve talked about ensuring that expecting mothers have accessible, patient-centered maternity care. How exactly are you working to achieve that?

JJ: I want to empower community-based perinatal health workers (such as nurse practitioners) who are interested in providing care to communities in need, and encourage them to become entrepreneurial. As long as people have the credentials or license to provide prenatal, post-partum, and women’s health care and are interested in independent practice, then my vision is that they build a private practice for themselves. Based on the concept that to get real change in maternal health outcomes in the United States, women need access to specific kinds of health care—not just any old health care, but the kind that is humane, patient-centered, woman-centered, family-centered, and culturally-safe, and where providers believe that the patients matter. That kind of care will transform outcomes instantly.

I coined the phrase “Easy Access Clinics” to describe retail women’s health clinics like a CVS MinuteClinic that serve as a first entry point to care in a community, rather than in a big health-care system. At the Orlando Easy Access Clinic, women receive their first appointment regardless of their ability to pay. People find out about us via word of mouth; they know what we do before they get here.

We are at the point where even the local government agencies send patients to us. They know that even while someone’s Medicaid application is in pending status, we will still see them and start their care, as well as help them access their Medicaid benefits as part of our commitment to their overall well-being.

Others are already replicating this model across the country and we are doing research as we go along. We have created a system that becomes sustainable because of the trust and loyalty of the patients and their willingness to support us in supporting them.

Photo Credit: Filmmaker Paolo Patruno

Joseph speaking with a family at her central Florida clinic. (Credit: Filmmaker Paolo Patruno)

RewireWhat are your thoughts on the decision in Florida not to expand Medicaid at this time?

JJ: I consider health care a human right. That’s what I know. That’s how I was trained. That’s what I lived all the years I was in Europe. And to be here and see this wanton disregard for health and humanity breaks my heart.

Not expanding Medicaid has such deep repercussions on patients and providers. We hold on by a very thin thread. We can’t get our claims paid. We have all kinds of hoops and confusion. There is a lack of interest and accountability from insurance payers, and we are struggling so badly. I also have a Change.org petition right now to ask for Medicaid coverage for pregnant women.

Health care is a human right: It can’t be anything else.

Rewire: You launched the National Perinatal Task Force in 2015. What do you hope to accomplish through that effort?

JJ: The main goal of the National Perinatal Task Force is to connect perinatal service providers, lift each other up, and establish community recognition of sites committed to a certain standard of care.

The facilities of task force members are identified as Perinatal Safe Spots. A Perinatal Safe Spot could be an educational or social site, a moms’ group, a breastfeeding circle, a local doula practice, or a community center. It could be anywhere, but it has got to be in a community with what I call a “materno-toxic” area—an area where you know without any doubt that mothers are in jeopardy. It is an area where social determinants of health are affecting mom’s and baby’s chances of being strong and whole and hearty. Therein, we need to put a safe spot right in the heart of that materno-toxic area so she has a better chance for survival.

The task force is a group of maternity service providers and concerned community members willing to be a safe spot for that area. Members also recognize each other across the nation; we support each other and learn from each others’ best practices.

People who are working in their communities to improve maternal and infant health come forward all the time as they are feeling alone, quietly doing the best they can for their community, with little or nothing. Don’t be discouraged. You can get a lot done with pure willpower and determination.

RewireDo you have funding to run the National Perinatal Task Force?

JJ: Not yet. We have got the task force up and running as best we can under my nonprofit Commonsense Childbirth. I have not asked for funding or donations because I wanted to see if I could get the task force off the ground first.

There are 30 Perinatal Safe Spots across the United States that are listed on the website currently. The current goal is to house and support the supporters, recognize those people working on the ground, and share information with the public. The next step will be to strengthen the task force and bring funding for stability and growth.

RewireYou’re featured in the new film The American Dream. How did that happen and what are you planning to do next?

JJ: The Italian filmmaker Paolo Patruno got on a plane on his own dime and brought his cameras to Florida. We were planning to talk about Black midwifery. Once we started filming, women were sharing so authentically that we said this is about women’s voices being heard. I would love to tease that dialogue forward and I am planning to go to four or five cities where I can show the film and host a town hall, gathering to capture what the community has to say about maternal health. I want to hear their voices. So far, the film has been screened publicly in Oakland and Kansas City, and the full documentary is already available on YouTube.

RewireThe Black Mamas Matter Toolkit was published this past June by the Center for Reproductive Rights to support human-rights based policy advocacy on maternal health. What about the toolkit or other resources do you find helpful for thinking about solutions to poor maternal health in the Black community?

JJ: The toolkit is the most succinct and comprehensive thing I’ve seen since I’ve been doing this work. It felt like, “At last!”

One of the most exciting things for me is that the toolkit seems to have covered every angle of this problem. It tells the truth about what’s happening for Black women and actually all women everywhere as far as maternity care is concerned.

There is a need for us to recognize how the system has taken agency and power away from women and placed it in the hands of large health systems where institutionalized racism is causing much harm. The toolkit, for the first time in my opinion, really addresses all of these ills and posits some very clear thoughts and solutions around them. I think it is going to go a long way to begin the change we need to see in maternal and child health in the United States.

RewireWhat do you count as one of your success stories?

JJ: One of my earlier patients was a single mom who had a lot going on and became pregnant by accident. She was very connected to us when she came to clinic. She became so empowered and wanted a home birth. But she was anemic at the end of her pregnancy and we recommended a hospital birth. She was empowered through the birth, breastfed her baby, and started a journey toward nursing. She is now about to get her master’s degree in nursing, and she wants to come back to work with me. She’s determined to come back and serve and give back. She’s not the only one. It happens over and over again.

This interview has been edited for length and clarity.

Commentary Sexual Health

Parents, Educators Can Support Pediatricians in Providing Comprehensive Sexuality Education

Nicole Cushman

While medical systems will need to evolve to address the challenges preventing pediatricians from sharing medically accurate and age-appropriate information about sexuality with their patients, there are several things I recommend parents and educators do to reinforce AAP’s guidance.

Last week, the American Academy of Pediatrics (AAP) released a clinical report outlining guidance for pediatricians on providing sexuality education to the children and adolescents in their care. As one of the most influential medical associations in the country, AAP brings, with this report, added weight to longstanding calls for comprehensive sex education.

The report offers guidance for clinicians on incorporating conversations about sexual and reproductive health into routine medical visits and summarizes the research supporting comprehensive sexuality education. It acknowledges the crucial role pediatricians play in supporting their patients’ healthy development, making them key stakeholders in the promotion of young people’s sexual health. Ultimately, the report could bolster efforts by parents and educators to increase access to comprehensive sexuality education and better equip young people to grow into sexually healthy adults.

But, while the guidance provides persuasive, evidence-backed encouragement for pediatricians to speak with parents and children and normalize sexual development, the report does not acknowledge some of the practical challenges to implementing such recommendations—for pediatricians as well as parents and school staff. Articulating these real-world challenges (and strategies for overcoming them) is essential to ensuring the report does not wind up yet another publication collecting proverbial dust on bookshelves.

The AAP report does lay the groundwork for pediatricians to initiate conversations including medically accurate and age-appropriate information about sexuality, and there is plenty in the guidelines to be enthusiastic about. Specifically, the report acknowledges something sexuality educators have long known—that a simple anatomy lesson is not sufficient. According to the AAP, sexuality education should address interpersonal relationships, body image, sexual orientation, gender identity, and reproductive rights as part of a comprehensive conversation about sexual health.

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The report further acknowledges that young people with disabilities, chronic health conditions, and other special needs also need age- and developmentally appropriate sex education, and it suggests resources for providing care to LGBTQ young people. Importantly, the AAP rejects abstinence-only approaches as ineffective and endorses comprehensive sexuality education.

It is clear that such guidance is sorely needed. Previous studies have shown that pediatricians have not been successful at having conversations with their patients about sexuality. One study found that one in three adolescents did not receive any information about sexuality from their pediatrician during health maintenance visits, and those conversations that did occur lasted less than 40 seconds, on average. Another analysis showed that, among sexually experienced adolescents, only a quarter of girls and one-fifth of boys had received information from a health-care provider about sexually transmitted infections or HIV in the last year. 

There are a number of factors at play preventing pediatricians from having these conversations. Beyond parental pushback and anti-choice resistance to comprehensive sex education, which Martha Kempner has covered in depth for Rewire, doctor visits are often limited in time and are not usually scheduled to allow for the kind of discussion needed to build a doctor-patient relationship that would be conducive to providing sexuality education. Doctors also may not get needed in-depth training to initiate and sustain these important, ongoing conversations with patients and their families.

The report notes that children and adolescents prefer a pediatrician who is nonjudgmental and comfortable discussing sexuality, answering questions and addressing concerns, but these interpersonal skills must be developed and honed through clinical training and practice. In order to fully implement the AAP’s recommendations, medical school curricula and residency training programs would need to devote time to building new doctors’ comfort with issues surrounding sexuality, interpersonal skills for navigating tough conversations, and knowledge and skills necessary for providing LGBTQ-friendly care.

As AAP explains in the report, sex education should come from many sources—schools, communities, medical offices, and homes. It lays out what can be a powerful partnership between parents, doctors, and educators in providing the age-appropriate and truly comprehensive sexuality education that young people need and deserve. While medical systems will need to evolve to address the challenges outlined above, there are several things I recommend parents and educators do to reinforce AAP’s guidance.

Parents and Caregivers: 

  • When selecting a pediatrician for your child, ask potential doctors about their approach to sexuality education. Make sure your doctor knows that you want your child to receive comprehensive, medically accurate information about a range of issues pertaining to sexuality and sexual health.
  • Talk with your child at home about sex and sexuality. Before a doctor’s visit, help your child prepare by encouraging them to think about any questions they may have for the doctor about their body, sexual feelings, or personal safety. After the visit, check in with your child to make sure their questions were answered.
  • Find out how your child’s school approaches sexuality education. Make sure school administrators, teachers, and school board members know that you support age-appropriate, comprehensive sex education that will complement the information provided by you and your child’s pediatrician.

School Staff and Educators: 

  • Maintain a referral list of pediatricians for parents to consult. When screening doctors for inclusion on the list, ask them how they approach sexuality education with patients and their families.
  • Involve supportive pediatricians in sex education curriculum review committees. Medical professionals can provide important perspective on what constitutes medically accurate, age- and developmentally-appropriate content when selecting or adapting curriculum materials for sex education classes.
  • Adopt sex-education policies and curricula that are comprehensive and inclusive of all young people, regardless of sexual orientation or gender identity. Ensure that teachers receive the training and support they need to provide high-quality sex education to their students.

The AAP clinical report provides an important step toward ensuring that young people receive sexuality education that supports their healthy sexual development. If adopted widely by pediatricians—in partnership with parents and schools—the report’s recommendations could contribute to a sea change in providing young people with the care and support they need.