Welcome to the Ethics Forum! The optometric profession has long recognized its ethical responsibilities to patients, colleagues, other health care professionals and the public. This forum provides an opportunity to review a hypothetical case study containing potential ethical challenges and includes suggestions on how one might handle the situation based upon the American Optometric Association Standards of Professional Conduct and Code of Ethics.

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If you have any questions on ethics, please submit them to EthicsQuestion@aoa.org. The AOA Ethics and Values Committee will respond to your questions as soon as possible. If you have an ethical challenge you wish to share, please feel free to submit a case description to ethics@aoa.org. The case description will be reviewed by the AOA Ethics and Values Committee and may be featured in a future Ethics Forum.

The Optometric Care of Patients with Disabilities

Thomas A. Wong, O.D., Director of New Technologies & Clinical Externships, SUNY

Case Study No. 12

On a typical Thursday morning at the university eye clinic, the attending doctor has 14 patients scheduled and works with two fourth-year optometry interns and one primary care resident. There are frequently many patients with disabilities scheduled. Care facilities in New York City designed for both children and adults with disabilities are numerous. Patients with disabilities can offer great challenges to an optometric exam related to a patient's:

  • inability to give subjective responses
  • physical and mental limitations
  • complicated systemic conditions
  • limited mobility
  • difficult transportation schedules
  • need for communication with the patient's inter-professional health care team
  • need for sedation to perform primary eye care testing

The resident typically handles these patients as they need careful attention to their multiple chronic systemic, eye and visual conditions. On this Thursday morning, she examines six special-needs patients and encounters the following conditions:

  • Degenerative myopia
  • Ocular hypertension
  • Dry eye disease
  • Congenital nystagmus
  • Optic atrophy
  • Anterior uveitis secondary to systemic lupus erythematosus
  • Keratoconus
  • AMD
  • Corneal ulcer

In order to examine these patients, the resident makes frequent use of the following technologies:

  • Ultrasound B scan
  • iCare handheld tonometry
  • Ophthalmic coherence tomography (OCT)
  • Integrated wavefront aberrometry
  • Handheld fundus photography
  • Handheld slit lamp
  • Retinoscopy with lens rack
  • Handheld anterior segment photography

Ethical principles involved in examining patients with disabilities

In examining patients with disabilities, it is important that doctors of optometry keep the following ethical principles in mind:

1. Autonomy is a principle which we will define as self-governance. It is important that doctors have respect for autonomy, i.e., the patient's autonomy. Patients with disabilities often have reduced and sometimes severely limited autonomy.1 Because these patients are not often not able to communicate, make decisions or consent to procedures, it is important that doctors communicate with everyone on the patient's health care team (family members, aides, surrogates, nurses, physicians, etc.). If disabled patients need to have more invasive optometric procedures, informed consent can become a more complex issue. Often the resident must communicate with nurse practitioners, physician assistants, and other members of the patient's health care team to obtain a proper history, obtain permission for dilation and other optometric procedures, and educate the patient and those responsible for the patient's care. As new technologies can be very important in examining this population, it is important that the doctor communicate with the patient's health care team so that the patient receives optimal care. Patients with disabilities often present diagnostic challenges to the doctor, so one must be vigilant not to under- or over-test (e.g., order expensive tests that may not be necessary). It is important that the appropriate tests are chosen. In fact, as many doctors may not have equipment needed to test this population, e.g., ultrasound B scan and OCTs, transfer of patient care to a larger referral center often can be necessary (e.g., optometry school, medical center or specialty practice). Furthermore, when taking care of these patients one should emphasize testing that improves patient outcomes and monitors the patient's health over time.

2. Beneficence-In medical ethics two principles are often outlined: Positive Beneficence, which we will define as providing benefits to others, and Utility, which requires doctors to balance the benefits, risks and costs to produce optimal overall results.2 Beneficence is a principle that doctors and other health care providers should understand as it refers to a moral obligation to act for the benefit of others.

3. Nonmaleficence is a principle that obligates us not to cause harm to patients. In medical ethics nonmaleficence is synonymous with the famous maxim, primum non nocere, or "first do no harm."3 Indeed both the Optometric and Hippocratic Oaths incorporate an obligation to nonmaleficence and beneficence.4 In June 2017 at the AOA Optometry's Meeting® in Washington, D.C., the Optometric Oath was amended to insert the statement, "I AFFIRM that the health of my patient will be my first consideration."5 When examining patients who are disabled, have limited autonomy and competence to make decisions, doctors should keep this statement in mind, as the resident always does.

Practical advice

In seeing patients with disabilities, the resident teaches her student/interns to do the following:

  • Thoroughly understand the patient's systemic, ocular and refractive status
  • Understand the health care team, identify the surrogate decision-makers, and paper work to be completed
  • In refracting these patients use larger dioptric increments
  • Utilize objective testing (retinoscopy, wavefront analyzers) and medical imaging that will positively impact patient outcomes
  • Educate the patient, family, surrogates and the patient's inter-professional health care team
  • Move quickly, but treat the patient with empathy and compassion

Modern concepts of disability

Our understanding and knowledge concerning disabilities has evolved over time. Modern theories teach us that disabilities can be viewed as relative concepts that can be better understood with the Social Model of Disability rather than the more intuitive and traditional Medical Model of Disability. The social model of disability is based on a person's interaction with the environment in contrast with the concept of normalcy or the "normal body." We are all dependent on technology, and modern conveniences to survive and function in society. Most of us could not function without electricity, automobiles, trains, subways or smartphones in our current roles. A century ago, myopia was considered a very debilitating disability. However, with the tremendous access to spectacles and contact lenses in the 21st Century, most cases of myopia do not represent a disability in modern society. A compelling example is the evolution of those who are deaf or hearing impaired in modern society. Modern technology, e.g., smartphones, voice transcription, tablets, text messaging, and artificial intelligence applications, have made it seamless for hearing-impaired individuals to navigate and function in the world. In fact, many of the facilities and institutes for the hearing impaired have disappeared from large cities as many in the hearing-impaired community no longer consider their condition to be a disability.6

The problem of moral status

Seeing patients with disabilities can often require additional investments in equipment and staffing. Are doctors obligated to be able to see these patients? Modern technology and the evolution of inter-professional health care teams allow for disabled patients to more easily access good optometric care in many areas of modern society. Telemedicine will become a larger part of the health care delivery system for many areas of the world with very limited access to good optometric and medical care.7 All patients today deserve to have quality optometric care, but referrals to optometric practices that can handle this population are often necessary (and often better for the patient). As the resident teaches her students/interns, doctors should strive to make the health of all patients our first priority (first tenet of the Optometric Oath). Patients who are disabled, or who have limited autonomy and competence to communicate and make decisions still deserve quality optometric and medical care. Modern theories of bioethics now contend that those persons who have moral status deserve our consideration, have rights, etc. The resident demonstrates that the proper care of this population is the right thing to do, and helps us to become the professionals we aspire to be.

Conclusions

The profession of optometry has become an integral part of the health care system world-wide. As the global population grows and becomes more diverse, our understanding of disability is enhanced both by new social and medical models. Critical thinking processes and the understanding of modern bioethical principles are both essential to the proper optometric care of this patient population. Furthermore, case studies for complex disabled patients have the potential to represent new paradigms for the ethical care of all patients.

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1 Beauchamp TL, Childress JF: Principles of Biomedical Ethics. New York, Oxford University Press, 2013.

2 Pellegrino ED, Thomasma DT: For the Good of the Patient: The Restitution of Beneficence in Medical Ethics. New York, Oxford University Press, 1988.

3 Beauchamp TL, McCullough LB: Medical Ethics: The Moral Responsibilities of Physicians. Englewood Cliffs, NJ, Prentice-Hall, 1984.

4 Pellegrino ED, Toward a reconstruction of medical morals: The primacy of the act of profession and the fact of illness, J Med Philosophy 4:32-56, 1979.

5 https://www.aoa.org/about-the-aoa/ethics-and-values/the-optometric-oath

6 https://bioethicsarchive.georgetown.edu/phil105/human-body-and-the-concept-ofnatural/disability/index.html

7 Petito GT: The Evolution of Telemedicine in Eye Care. Advances in Ophthalmology and Optometry 2 (2017) 1-14.

About the Author:

Dr. Wong serves as the Director of New Technologies and Clinical Externships at the SUNY College of Optometry. He is the Former Chief of Adult & Pediatric Primary Eye Care at SUNY Optometry, and a past member of the AOA Ethics and Values Committee and the ASCO Ethics Educator's SIG. He serves on the Board of Governors at Georgetown University, the American Medical Association's Physician's Consortium for Performance Improvement (PCPI), the PCPI's Technical Expert Panel for Eye Care, and he has been an active participant in Georgetown's Kennedy Institute of Ethics' Intensive Bioethics Course

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