Justice in Ophthalmology
Justice is the ethical principle dealing with the fair and equitable treatment of individuals. Ophthalmologists can practice justice by helping underserved patients and working to reduce racial and ethnic disparities in ophthalmology.
Justice is a principle of medical ethics which is concerned with the fair and equitable treatment of individuals. Upholding justice requires respecting individuals' basic rights and not discriminating based on factors such as race, ethnicity, age or gender. Often, the term justice in healthcare refers specifically to distributive justice, which refers to the fair distribution of limited healthcare resources. Which system of resource allocation is "fair" is controversial and several competing theories of distributive justice are found in medical ethics.
Justice is considered one of the four core principles of medical ethics along with autonomy, beneficence, and non-maleficence. Although justice is a complex principle with no universally acknowledged definition, applications of justice are often thought to include improving access to care for underserved populations and eliminating disparities based around race, ethnicity, or other factors. Justice is also important in medical research ethics, where it demands that both benefits and risks of medical research are equitably distributed among groups. All these applications are relevant to ophthalmology.
Theories of Distributive Justice
Several theories of distributive justice argue for different systems of allocating scarce healthcare resources. A few of the more influential theories are described here.
Libertarian theories of justice emphasize the protection of individual liberty and property rights. Under a pure libertarian theory, limited resources should be allocated based on individuals' ability and willingness to pay in the free market. The role of the state is purely to protect property rights and guarantee fair transactions. The healthcare system in the United States has traditionally best fit the libertarian theory of justice in that healthcare and health insurance have generally been privatized and sold via the free market, although large public health programs now exist.
Under an egalitarian theory of justice, resources should be allocated to ensure some level of equal distribution among individuals. Such theories typically argue that humans are inherently equal and that this equality should be reflected in resource distribution. An egalitarian state should therefore engage in substantial resource redistribution to attain a more equal distribution of resources. Egalitarian theories typically allow some degree of inequality but vary in how much they permit. An example of a pure egalitarian healthcare system is one in which full, universal health care is provided for all citizens using government tax revenue.
Right to a Decent Minimum
A compromise between libertarian and egalitarian theories of distributive justice in healthcare argues that all individuals deserve a certain decent minimum of healthcare but allows inequalities beyond that. Proponents of the right to a decent minimum argue for a two-tiered healthcare system. In the first tier, essential healthcare services are guaranteed, while in the second tier, higher quality or less essential services may be purchased in the free market. Healthcare systems which are privatized but feature substantial social safety net programs may be seen as fulfilling this theory.
Access to Eye Care
In the United States and elsewhere, many individuals suffer from inadequate access to ophthalmic and vision care. Although opinions vary regarding the ideal health care system and the nature of healthcare reform, in general, helping underserved groups is considered an admirable goal consistent with most conceptions of justice. This section focuses on gaps in access to eye care and how ophthalmologists can help underserved patients.
Gaps in Access to Care
In 2019, 10.9% of the nonelderly American population - 28.9 million individuals - lacked health insurance, and these numbers are likely to increase. Studies have found that lack of health insurance is correlated with lower rates of recommended healthcare utilization including reduced utilization of eye care., Diabetics who are uninsured, for example, are less likely to receive dilated eye exams. In general, lack of health insurance has been associated with delays in care, which are correlated with poorer health outcomes including permanent vision loss for those with ophthalmic disease.
Even for the insured, there are substantial gaps in access to eye care. Cost is still a major barrier to access: in one study of individuals at high risk for vision loss, income was associated with likelihood of receiving a dilated eye exam independent of insurance status. Less than half of all high risk individuals had seen an eye doctor or received a dilated eye exam in the last year, an alarming percentage given that many eye diseases are initially asymptomatic.
In addition, health insurance in the U.S. does not typically cover routine eye exams or the price of eyeglasses or contact lenses. These benefits are covered in optional vision insurance. Vision insurance is much less common than health insurance, although it has been found to increase utilization of eye care and reduce functional limitations due to vision. Traditional Medicare does not include vision insurance. However, Medicare Advantage, an alternative form of Medicare administered by private companies, typically offers these benefits. Medicaid offers vision insurance for all covered children, with no cost-sharing for eye exams; for adults, vision insurance benefits are offered only in select states.
Helping Underserved Patients
Ophthalmologists can promote justice by helping underserved patients improve their access to eye care. Such patients can present in a variety of ways. The may be uninsured or insured and may openly complain about their barriers to care or be reluctant to discuss them. Providers should begin by having an empathetic conversation with the patient to identify their specific barriers to care (lack of insurance, high copays, transportation, etc.)
Once problems are identified, the ophthalmologist or other staff should evaluate the patient's eligibility for government benefits. www.Benefits.gov is a helpful website which points patients towards those programs for which they might be eligible. In some cases, directing patients to federally funded community health centers may be beneficial. Such centers are in underserved areas and provide patients comprehensive primary care with charges billed on a sliding scale. Unfortunately, most such centers do not have an ophthalmologist or optometrist on site.
For patients still unable to pay, there are a variety of private programs which help cover costs of different eye care services., For example, EyeCare America provides free or low-cost eye exams for eligible seniors and individuals at risk for glaucoma, while Mission Cataract USA and Operation Sight may provide free cataract surgery.
Racial and Ethnic Disparities in Ophthalmology
Because justice is concerned with the equitable treatment of individuals, the principle is fundamentally opposed to disparities or discrimination centered around race or ethnicity. Unfortunately, such disparities are common in medicine, including ophthalmology. Justice demands that ophthalmologists work to reduce such inequalities.
Disparities in Care and Outcomes
There is substantial evidence that gaps in access to eye care in the U.S. are unequally distributed among racial and ethnic groups. Black and Hispanic individuals have been found to be significantly less likely to visit an ophthalmologist compared to Caucasians. Glaucoma, a potentially blinding disease, is much more common in black individuals. However, there is evidence that blacks as well as Hispanics may receive inadequate levels of glaucoma testing. Black patients may also be undertreated surgically, and were found by one study to receive glaucoma surgery at 47% the rate of their white counterparts.
Racial minorities similarly tend to have poorer outcomes from eye disease. Black Americans are 1.4 times more likely than Caucasians to have visual impairment due to diabetic retinopathy, and black and Hispanic individuals are 1.8 and 1.3 times more likely, respectively, to be visually impaired from glaucoma. Black and Hispanic Americans are also more likely to have visual impairment due to refractive error, suggesting reduced access to eye exams and corrective lenses.
Although these disparities may be partially explained by socioeconomic factors, many racial inequalities in medicine continue even after controlling for factors such as income. There is a consensus that such inequalities also reflect discrimination or biases at multiple levels of the healthcare system. Whether through reevaluating their own interactions with patients, instituting new training for staff, or using other methods, ophthalmologists should do their part to combat racial biases.
Underrepresentation in the Ophthalmology Workforce
Underrepresented groups in medicine (URM) are those which exist in the physician population at lower rates than in the general population and are often considered to include African Americans, Hispanics or Latinos, and Native Americans. Although such groups make up 33% of the American population, they are severely underrepresented at all levels of the ophthalmology workforce. One study found that cumulatively, these URM populations make up only 6% of practicing ophthalmologists and 7.7% of residents. Notably, URM representation is lower among ophthalmologists than among medical students or physicians in general, indicating the field struggles to attract URM residency applicants.
Although the proportion of women in the ophthalmology workforce has increased in recent years, the proportions of underrepresented ethnic and racial groups have been stagnant or even declined. Such disparities are concerning with regards to justice both because they suggest unequal access to the field of ophthalmology, and because they have implications for patient care. Data shows that many patients belonging to ethnic or racial minorities prefer doctors who share their race, likely due to fears of discrimination, and that such pairings are associated with greater patient satisfaction. URM ophthalmologists are also more likely to work in underserved areas and thus have the potential to improve access to care.
Justice demands that ophthalmologists take steps to reduce underrepresentation at all levels. Programs designed to increase students' exposure to the field are essential. Mentorship programs such as the American Academy of Ophthalmology (AAO) Minority Ophthalmology Mentoring program offer an attractive model which offers both exposure to ophthalmology and resources to build a strong residency application. Ophthalmology organizations must also promote fairly to ensure that URMs have equal access to leadership positions.
Justice in Research
Justice is an important principle in research ethics and demands that both the benefits and risks of research be equitably distributed among groups. In ophthalmology research, an important application of justice is ensuring adequate representation of racial and ethnic minorities in clinical trials.
Justice in Research Ethics
Traditionally, justice in research ethics was concerned with the protection of vulnerable populations from exploitation. Potentially vulnerable groups include prisoners, ethnic or racial minorities, individuals of low socioeconomic status, and children. Historic examples of exploitation, such as NAZI Germany experiments in concentration camps and the Tuskegee syphilis study on African Americans, have led to awareness that such groups can be easily made to bear unacceptable risks. Codes of research ethics have attempted to protect vulnerable groups by suggesting that research be avoided in especially vulnerable populations, such as prisoners, unless it cannot be carried out elsewhere.,
More recently, there has emerged a consensus that justice demands equitable distribution of research benefits in addition to risks. Benefits of research may include health benefits to research subjects from new therapeutics as well valuable information regarding the function of a disease or treatment in the studied demographic. In this case, the challenge is ensuring historically disadvantaged groups are adequately included in research. For example, unless a racial minority is included in sufficient proportions in trials for a new drug, researchers might not discover unique side effects of the drug in that population.
Regarding justice in human subjects research, the Declaration of Helsinki notes the existence of vulnerable groups which require special protection. It further states that research should only be conducted in vulnerable groups if the group stands to benefit from the research. The Belmont Report includes justice as one of its three core principles of research ethics and states that its primary application is the equitable selection of research subjects. Importantly, the authors note that even if individual subjects are selected fairly, institutional biases may lead to a skewed selection of subjects and an unjust distribution of benefits and risks.
Disparities in Ophthalmology Research
Inclusion of different ethnic and racial groups in ophthalmology research is especially important because major eye diseases including glaucoma and age-related macular degeneration are unequally distributed among racial groups. However, significant racial disparities exist in ophthalmology clinical trials. In one study including trials of ophthalmic drugs from 2000 to 2020, African Americans, Hispanics, and other non-white individuals were all found to be underrepresented in trials relative to their disease burden. Strategies to decrease such disparities include collaborating with physicians and clinics that serve mainly ethnic or racial minorities and making recruitment materials available in multiple languages.
Consider the following case in which an ophthalmologist might treat a patient with limited access to care.
You perform a comprehensive eye exam on 56 year-old man with diabetes who has not seen an ophthalmologist in many years. Although you note no evidence of diabetic retinopathy, you make a diagnosis of primary open angle glaucoma after discovering optic disc atrophy and elevated intraocular pressure. You explain the diagnosis and recommend a topical prostaglandin, but the patient expresses concern about the cost of the medication. He explains that he is uninsured and has struggled to take many medications in the past due to difficulty affording them.
In this scenario, an ophthalmologist is confronted with a patient with limited access to care due to being uninsured. The principle of justice supports taking extra steps to better care for this underserved patient. However, it is important to recognize that the provider's time is limited and that by spending excessive time with one patient, they may compromise other patients' care or their own mental wellbeing.
Often, the best initial response is to determine what price is acceptable for the patient and consider alternative treatments. In this case, the provider should discuss the option of selective laser trabeculoplasty (SLT), a procedure with similar efficacy to topical glaucoma medications. SLT can typically replace one medication and becomes less expensive than generic latonoprost after about 13 months. Although SLT may present a larger initial cost to this patient, it offers eventual savings and will not be affected by difficulties with medication compliance due to cost or other factors.
Glaucoma medications vary widely in cost, and it is also reasonable to change to a cheaper prostaglandin or a drug from another class, such as a generic beta blocker, the cheapest of the first-line glaucoma medications. The ophthalmologist or other staff may also consider evaluating the patient's eligibility for Medicare or Medicaid, helping the patient compare prices at different pharmacies, or putting the patient in touch with private charities.
- Feinsod F, Wagner C. The Ethical Principle of Justice: The Purveyor of Equality. Annals of Long Term Care. 2008;16(1). Accessed May 19, 2021. https://www.managedhealthcareconnect.com/article/8210
- Beauchamp TL. Principles of Biomedical Ethics. 8th ed. Oxford University Press; 2019.
- Gabrani J, Wallace N, Gabrani A, Bloom J. EGALITARIANISM IN HEALTHCARE - PROS AND CONS; THE IMPERATIVE FOR INNOVATIVE LENS IN WESTERN BALKANS. undefined. Published online 2015. Accessed May 19, 2021. /paper/EGALITARIANISM-IN-HEALTHCARE-PROS-AND-CONS%3B-THE-FOR-Gabrani-Wallace/90be790ffcee12aec0b3b111025efcb64a549ee5
- Tolbert J, Orgera K, Damico A. Key Facts about the Uninsured Population. KFF website. Published November 6, 2020. Accessed May 21, 2021. https://www.kff.org/uninsured/issue-brief/key-facts-about-the-uninsured-population/
- Ross JS, Bradley EH, Busch SH. Use of health care services by lower-income and higher-income uninsured adults. JAMA. 2006;295(17):2027-2036. doi:10.1001/jama.295.17.2027
- Lee DJ, Lam BL, Arora S, et al. Reported eye care utilization and health insurance status among US adults. Arch Ophthalmol. 2009;127(3):303-310. doi:10.1001/archophthalmol.2008.567
- Zhang X, Lee PP, Thompson TJ, et al. Health Insurance Coverage and Use of Eye Care Services. Archives of Ophthalmology. 2008;126(8):1121-1126. doi:10.1001/archopht.126.8.1121
- Nelson KM, Chapko MK, Reiber G, Boyko EJ. The association between health insurance coverage and diabetes care; data from the 2000 Behavioral Risk Factor Surveillance System. Health Serv Res. 2005;40(2):361-372. doi:10.1111/j.1475-6773.2005.00361.x
- Weissman JS, Stern R, Fielding SL, Epstein AM. Delayed access to health care: risk factors, reasons, and consequences. Ann Intern Med. 1991;114(4):325-331. doi:10.7326/0003-4819-114-4-325
- Foot B, MacEwen C. Surveillance of sight loss due to delay in ophthalmic treatment or review: frequency, cause and outcome. Eye. 2017;31(5):771-775. doi:10.1038/eye.2017.1
- Zhang X, Saaddine JB, Lee PP, et al. Eye Care in the United States: Do We Deliver to High-Risk People Who Can Benefit Most From It? Archives of Ophthalmology. 2007;125(3):411-418. doi:10.1001/archopht.125.3.411
- Li Y-J, Xirasagar S, Pumkam C, Krishnaswamy M, Bennett CL. Vision Insurance, Eye Care Visits, and Vision Impairment Among Working-Age Adults in the United States. JAMA Ophthalmology. 2013;131(4):499-506. doi:10.1001/jamaophthalmol.2013.1165
- Lipton BJ, Decker SL. The effect of health insurance coverage on medical care utilization and health outcomes: Evidence from Medicaid adult vision benefits. Journal of Health Economics. 2015;44:320-332. doi:10.1016/j.jhealeco.2015.10.006
- Vessel M. Medicare and Medicaid Vision Benefits. All About Vision website. Published February 2019. Accessed May 19, 2021. https://www.allaboutvision.com/vision-insurance/medicare-medicaid.htm
- Vision and Hearing Screening Services for Children and Adolescents. Medicaid.gov. Accessed May 22, 2021. https://www.medicaid.gov/medicaid/benefits/early-and-periodic-screening-diagnostic-and-treatment/vision-and-hearing-screening-services-children-and-adolescents/index.html
- Haney K. When Medicaid Covers Vision [Exams, Eyewear, Surgery]. Growing Family Benefits website. Published March 18, 2021. Accessed May 22, 2021. https://www.growingfamilybenefits.com/medicaid-cover-adult-eye-care/
- Benefits.gov. Accessed May 22, 2021. https://www.benefits.gov/
- What is a Health Center? Bureau of Primary Health Care website. Published August 14, 2018. Accessed May 22, 2021. https://bphc.hrsa.gov/about/what-is-a-health-center/index.html
- Shin P, Finnegan B. Assessing the need for on-site eye care professionals in community health centers. Policy Brief George Wash Univ Cent Health Serv Res Policy. Published online February 2009:1-23. PMID: 19768853.
- Roach, L. How to Help Patients Who Can’t Pay. American Academy of Ophthalmology website. Published July 1, 2010. Accessed May 22, 2021. https://www.aao.org/eyenet/article/how-to-help-patients-who-can-t-pay
- Get Help Paying For Eye Care. NIH: National Eye Institute website. Last updated May 19, 2021. Accessed May 23, 2021. https://www.nei.nih.gov/learn-about-eye-health/healthy-vision/get-help-paying-eye-care
- EyeCare America. American Academy of Ophthalmology website. Accessed May 22, 2021. https://www.aao.org/eyecare-america
- Mission Cataract USA. Accessed May 23, 2021. http://missioncataractusa.org/
- Operation Sight. ASCRS website. Accessed May 23, 2021. https://ascrs.org/foundation/operation-sight
- Institute of Medicine (US) Committee on Understanding and Eliminating Racial and Ethnic Disparities in Health Care, Smedley BD, Stith AY, Nelson AR, eds. Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care. Washington (DC): National Academies Press (US); 2003. doi:10.17226/12875
- Orr P, Barrón Y, Schein OD, Rubin GS, West SK. Eye care utilization by older americans: The SEE project. Ophthalmology. 1999;106(5):904-909. doi:10.1016/S0161-6420(99)00508-4
- Zhang X, Cotch MF, Ryskulova A, et al. Vision Health Disparities in the United States by Race/Ethnicity, Education, and Economic Status: Findings from Two Nationally Representative Surveys. Am J Ophthalmol. 2012;154(6 0):S53-62.e1. doi:10.1016/j.ajo.2011.08.045
- Elam AR, Andrews C, Musch DC, Lee PP, Stein JD. Large Disparities in Receipt of Glaucoma Care between Enrollees in Medicaid and Those with Commercial Health Insurance. Ophthalmology. 2017;124(10):1442-1448. doi:10.1016/j.ophtha.2017.05.003
- Stein JD, Talwar N, LaVerne AM, Nan B, Lichter PR. Racial Disparities in the Use of Ancillary Testing to Evaluate Individuals With Open-Angle Glaucoma. Archives of Ophthalmology. 2012;130(12):1579-1588. doi:10.1001/archophthalmol.2012.1325
- Devgan U, Yu F, Kim E, Coleman AL. Surgical Undertreatment of Glaucoma in Black Beneficiaries of Medicare. Archives of Ophthalmology. 2000;118(2):253-256. doi:10.1001/archopht.118.2.253
- Data 2020. HealthyPeople.gov. Accessed May 24, 2021. https://www.healthypeople.gov/2020/data-search/
- Underrepresented in Medicine Definition. AAMC website. Accessed May 24, 2021. https://www.aamc.org/what-we-do/equity-diversity-inclusion/underrepresented-in-medicine
- QuickFacts: United States. United States Census Bureau website. Accessed May 24, 2021. https://www.census.gov/quickfacts/fact/table/US/PST045219
- Xierali IM, Nivet MA, Wilson MR. Current and Future Status of Diversity in Ophthalmologist Workforce. JAMA Ophthalmology. 2016;134(9):1016-1023. doi:10.1001/jamaophthalmol.2016.2257
- Aguwa UT, Srikumaran D, Brown N, Woreta F. Improving Racial Diversity in the Ophthalmology Workforce: A Call to Action for Leaders in Ophthalmology. American Journal of Ophthalmology. 2021;223:306-307. doi:10.1016/j.ajo.2020.10.007
- Chen FM, Fryer GE, Phillips RL, Wilson E, Pathman DE. Patients’ Beliefs About Racism, Preferences for Physician Race, and Satisfaction With Care. Ann Fam Med. 2005;3(2):138-143. doi:10.1370/afm.282
- Takeshita J, Wang S, Loren AW, et al. Association of Racial/Ethnic and Gender Concordance Between Patients and Physicians With Patient Experience Ratings. JAMA Netw Open. 2020;3(11):e2024583. doi:10.1001/jamanetworkopen.2020.24583
- Olivier MMG, Forster S, Carter KD, Cruz OA, Lee PP. Lighting a Pathway: The Minority Ophthalmology Mentoring Program. Ophthalmology. 2020;127(7):848-851. doi:10.1016/j.ophtha.2020.02.021
- Read the Belmont Report. HHS.gov. Published January 15, 2018. Accessed April 8, 2021. https://www.hhs.gov/ohrp/regulations-and-policy/belmont-report/read-the-belmont-report/index.html
- WMA Declaration of Helsinki – Ethical Principles for Medical Research Involving Human Subjects. World Medical Association website. Published July 9, 2018. Accessed April 8, 2021. https://www.wma.net/policies-post/wma-declaration-of-helsinki-ethical-principles-for-medical-research-involving-human-subjects/
- Berkowitz ST, Groth SL, Gangaputra S, Patel S. Racial/Ethnic Disparities in Ophthalmology Clinical Trials Resulting in US Food and Drug Administration Drug Approvals From 2000 to 2020. JAMA Ophthalmology. Published online April 22, 2021. doi:10.1001/jamaophthalmol.2021.0857
- Liu AJ, Friedman DS, Collins ME. Strategies to Address Racial and Ethnic Disparities in Vision Care Research. JAMA Ophthalmology. 2020;138(11):1119-1120. doi:10.1001/jamaophthalmol.2020.3969
- McAlinden C. Selective laser trabeculoplasty (SLT) vs other treatment modalities for glaucoma: systematic review. Eye. 2014;28(3):249-258. doi:10.1038/eye.2013.267
- Keyser MD, Belder MD, Belder JD, Groot VD. Selective laser trabeculoplasty as replacement therapy in medically controlled glaucoma patients. Acta Ophthalmologica. 2018;96(5):e577-e581. doi:https://doi.org/10.1111/aos.13509
- Keenan JD. Cost of Selective Laser Trabeculoplasty vs Topical Medications for Glaucoma. Arch Ophthalmol. 2012;130(4):529. doi:10.1001/archophthalmol.2012.355
- Rylander NR, Vold SD. Cost Analysis of Glaucoma Medications. American Journal of Ophthalmology. 2008;145(1):106-113. doi:10.1016/j.ajo.2007.08.041