Skip to main content
Journal of Women's Health logoLink to Journal of Women's Health
. 2015 Dec 1;24(12):963–965. doi: 10.1089/jwh.2015.5623

Epic Fail: Prenatal Care for Women with Mobility Impairment

Tara Lagu 1,,2,,3,, Carolyn Delk 4,,5, Megan A Morris 6
PMCID: PMC4683541  PMID: 26653867

Prenatal care can ease the discomfort and anxiety of pregnancy, address risk factors for preterm birth or poor pregnancy outcomes, and reduce the likelihood that complications will affect the health of the mother and baby (e.g., preeclampsia, breech presentation).1 Accordingly, women receiving prenatal care perceive it as their best chance of reducing fetal morbidity and mortality.2,3 As with all healthcare delivery, there is a social contract: the patient engages in behavior that will optimize pregnancy outcomes (abstaining from alcohol, eating healthily, and remaining active) and the clinician treats the patient with dignity, attempts to respect her wishes (e.g., acceptance of screening tests or construction of birth plans), includes her in decision-making, and provides high-quality care. This contract extends to all patients, regardless of their demographics, concurrent or ongoing medical conditions, or disabilities.

The 1990 Americans with Disabilities Act (ADA) and Section 504 of the Rehabilitation Act state that providing care for patients with disabilities is both ethical and required by US federal law.4 Prior research has demonstrated that patients with disabilities frequently receive lower quality care than patients without disabilities,5–9 but no studies have focused specifically on prenatal care. One study did report that almost half of gynecologists (44%), some of whom likely provide prenatal care, would deny appointments to patients with a mobility impairment.7

In this issue of Journal of Women's Health, Iezzoni et al. report the results of a qualitative study examining the prenatal experiences of 22 mothers-to-be with mobility disabilities.10 Their results are disturbing and demand intervention. Many women with mobility disabilities reported that their obstetricians did not own height-adjustable tables or lifts. As a result, women were transferred from a wheelchair to the examination table in a manner that was potentially unsafe for both the patient and the staff. One woman reported being dropped three times during her pregnancy, putting both her and her pregnancy at risk. Some reported that by the end of their pregnancy, the physician stopped performing examinations altogether. None of the interviewed women was regularly weighed during their pregnancy; four reported never being weighed at all. Many women described humiliating experiences as they attempted to receive routine prenatal care (one woman was told to go to the post office to get weighed) and many reported emotional distress. While the women represent a selected population recruited using social media websites, prior research supports these experiences as typical.5–9

From a civil rights and legal standpoint, it is clear that these women's clinicians were violating federal law. There are important concerns from a medical standpoint as well. While the benefits of prenatal care for healthy women with uncomplicated pregnancy are still a subject of debate, prenatal care offers clear benefits for both mother and fetus when medical complexity or other risk factors are present,11 as might be seen in women who use wheelchairs because of illness or injury. For example, weight loss or failure to gain weight during a pregnancy can be a measure of the severity of hyperemesis gravidarum or alert the clinician that the fetus is at increased risk for intrauterine growth restriction and low birth weight. Rapid weight gain near the end of a pregnancy can signal that the patient is developing preeclampsia and needs monitoring or early delivery. Because none of the women in the study was regularly weighed, their clinicians missed the opportunity to optimally identify these conditions and potentially prevent poor outcomes. The clinicians also failed to comply with guidelines published by the American College of Obstetricians and Gynecologists, which recommend weighing patients at every prenatal visit.12

Perhaps most importantly, research indicates that when women report feeling respected during prenatal care, they report higher satisfaction and are more likely to actively participate in their care.13 Many of the women in this study felt disrespected by their physicians and the healthcare system. This alienation could leave them less likely to report changes in their health or new medical concerns, risking poorer maternal–fetal health and pregnancy outcomes.

How can this situation be remedied? First, clinicians must receive training as to how to best provide hands on care for these mothers. Second, they need to be educated about the best strategies for serving patients with mobility disabilities. This includes facilitating physical access by creating an environment free of physical impairments to care (e.g., ramps, parking, doorways, and bathrooms)14 and providing accessible equipment (adjustable height tables, lifts, and scales).14,15 While height adjustable tables may initially seem expensive, they can potentially appeal to all patients, not just those with disabilities. Patients come to medical offices because, in general, they are old, sick, or, in this case, pregnant. Traditional examination tables are cumbersome and might not serve any of these patients well, while a height adjustable table caters to the needs and experience of diverse patients.

Of equal importance to physical access is the need to examine policies and procedures that result in barriers to access. One key policy is the systematic collection of patients' disability status. Instead of relying on the patient to specify her needs before or at the time of the appointment, clinicians should systematically collect this information through intake forms that inquire about accommodations and include standardized validated questions that identify the majority of patients with disabilities within a practice.16 These data, which are periodically updated to monitor change in a patient's needs over time, should be integrated into the medical record and scheduling systems. While collection of this information is not sufficient on its own, it can be used to identify patients who could benefit from accommodations before their arrival. This allows for universal accessibility of scheduling, staffing, and administrative resources; a patient with mobility impairment who presents for an appointment is automatically assigned a room with a height adjustable table, and staff can be available to assist with transfer. This approach is similar to placing flags into the electronic medical record to indicate patient allergies.

Existing incentives designed to encourage practices to improve access are available but may not be well known. Tax credits are available for private practices to offset some of the expense of accessible equipment. These credits allow up to 50% of costs of equipment that is ADA compliant, up to $5000/year. In addition, many larger health systems could potentially reduce the chance of incurring financial penalties associated with poor patient experience of care by improving access and thus patient experience. Having accessible facilities and equipment also has the potential to reduce staff injuries and could improve access to preventive care, thereby reducing costs for some patients.

While education of the financial and legal implications of accessibility is important, it is clearly not sufficient. Many articles in the medical and the lay press have highlighted potential solutions, including a “how-to” guide that appeared in the New England Journal of Medicine.14 However, there is little evidence that physicians are making efforts to purchase accessible equipment or alter their policies and procedures to better serve patients with disabilities.

One potential reason that individual physicians have been slow to act may be due to the fact that most enforcement of the ADA and Rehabilitation Act has occurred through case-by-case litigation.17 This places the onus on patients to press for change, and patients may hesitate to bring complaints or lawsuits against their physician or midwife, especially if there is no available alternative clinician.18 Potential alternative approaches have been suggested. First, access for patients with disabilities should be a requirement for accreditation from organizations such the Joint Commission on Accreditation of Healthcare Organizations or State Departments of Health. Second, there should be improved oversight of contracts with Medicare and Medicaid (which generally include a clause stating that access for patients with disabilities is required). Improved oversight would allow Medicare and Medicaid to require accessibility standards as a prerequisite to physician payment. Failure to provide access for patients with disabilities would be treated as a form of fraud. Currently, clinicians who commit Medicare or Medicaid fraud have payments from all federal insurance programs frozen until the issue is resolved.

While increased enforcement through payment and accreditation mechanisms is unlikely to be popular with clinicians, it may be necessary if both research and patient narratives continue to describe substandard care for patients with disabilities. Rather than wait for new and potentially harsh penalties to be implemented, we suggest that clinicians take action now and begin to implement the recommendations of providing physical and programmatic access for all patients with mobility disabilities. At the very least, Dr. Iezzoni's study should remind us that we as clinicians have an ethical duty to try to improve the experience and quality of care for our patients. On entering this profession, we promised our patients that, first and foremost, we would do no harm. For patients with mobility impairment, we are failing in this promise.

Acknowledgment

Dr. T.L. is supported by the National Heart, Lung, and Blood Institute of the National Institutes of Health under Award Number K01HL114745.

References

  • 1.Evidence-Based Maternity Care: What it is and What it can Achieve. Available at: www.childbirthconnection.org/pdfs/evidence-based-maternity-care.pdf Accessed October2, 2015
  • 2.Ladfors L, Eriksson M, Mattsson LA, Kylebäck K, Magnusson L, Milsom I. A population based study of Swedish women's opinions about antenatal, delivery and postpartum care. Acta Obstet Gynecol Scand 2001;80:130–136 [PubMed] [Google Scholar]
  • 3.Hildingsson I, Waldenström U, Rådestad I. Women's expectations on antenatal care as assessed in early pregnancy: Number of visits, continuity of caregiver and general content. Acta Obstet Gynecol Scand 2002;81:118–125 [PubMed] [Google Scholar]
  • 4.Americans with Disabilities Act of 1990 (ADA), 42 USC § 12102 (2). Available at: www.ada.gov/pubs/adastatute08.htm Accessed November16, 2015
  • 5.Iezzoni LI, McCarthy EP, Davis RB, Harris-David L, O'Day B. Use of screening and preventive services among women with disabilities. Am J Med Qual 2001;16:135–144 [DOI] [PubMed] [Google Scholar]
  • 6.Iezzoni LI, Frakt AB, Pizer SD. Uninsured persons with disability confront substantial barriers to health care services. Disabil Health J 2011;4:238–244 [DOI] [PubMed] [Google Scholar]
  • 7.Lagu T, Hannon NS, Rothberg MB, et al. . Access to subspecialty care for patients with mobility impairment: A survey. Ann Intern Med 2013;158:441–446 [DOI] [PubMed] [Google Scholar]
  • 8.Chan L, Doctor JN, MacLehose RF, et al. . Do Medicare patients with disabilities receive preventive services? A population-based study. Arch Phys Med Rehabil 1999;80:642–646 [DOI] [PubMed] [Google Scholar]
  • 9.Burns ME. Medicaid managed care and health care access for adult beneficiaries with disabilities. Health Serv Res 2009;44:1521–1541 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 10.Iezzoni L, Wint A, Smeltzer S, Ecker J. Physical accessibility of routine prenatal care for women with mobility disability. J Womens Health (In Press) [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 11.Nair M, Kurinczuk JJ, Brocklehurst P, Sellers S, Lewis G, Knight M. Factors associated with maternal death from direct pregnancy complications: A UK national case-control study. BJOG 2015;122:653–662 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 12.Kriebs JM. Guidelines for perinatal care, sixth edition: By the American Academy of Pediatrics and the American College of Obstetricians and Gynecologists. J Midwifery Women's Health 2010;55:e37–e37 [Google Scholar]
  • 13.Sword W, Heaman MI, Brooks S, et al. . Women's and care providers' perspectives of quality prenatal care: A qualitative descriptive study. BMC Pregnancy Childbirth 2012;12:29. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 14.Lagu T, Iezzoni LI, Lindenauer PK. The axes of access—Improving care for patients with disabilities. N Engl J Med 2014;370:1847–1851 [DOI] [PubMed] [Google Scholar]
  • 15.Mudrick NR, Breslin ML, Liang M, Yee S. Physical accessibility in primary health care settings: Results from California on-site reviews. Disabil Health J 2012;5:159–167 [DOI] [PubMed] [Google Scholar]
  • 16.Morris MA, Hasnain-Wynia R. A research agenda for documenting disability status within healthcare organizations to address disparities in care. J Healthc Qual 2014;36:7–12; quiz 12–13 [DOI] [PubMed] [Google Scholar]
  • 17.Lagu T, Griffin C, Lindenauer PK. Ensuring access to health care for patients with disabilities. JAMA Intern Med 2015;175:157–158 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 18.The Current State of Health Care for People with Disabilities. Washington, DC: National Council on Disability, 2009. Available at: www.ncd.gov/publications/2009/Sept302009#Americans%20with%20Disabilities Accessed May5, 2014 [Google Scholar]

Articles from Journal of Women's Health are provided here courtesy of Mary Ann Liebert, Inc.

RESOURCES