This Winter Break, I worked for a Vitreoretinal Surgeon in Charleston, South Carolina as an Ophthalmic Technician, trained on taking Visual Acuity Exams, Optical Coherence Tomagraphs (OCTs), Fundoscopic Examinations (Fundus), and Fluorescein Angiographs (FA). The patient population that I worked with had significantly high levels of diabetes, a disease that requires constant and ongoing medical care to sustain many physiological functions, in this case, sight. Before I begin, I want to provide a disclaimer that I am not an expert in Diabetes or any of the conditions discussed and have explained these conditions to the best of my ability. Furthermore, the context on these diseases will provide background for the argument that I am going to make concerning the ethics of sustainment, a phrase that I have coined referring to the ethical implications of continuing to provide medical care when non-life-threatening conditions are being stabilized or sustained, without hope of improvement.
Diabetes is one of the least understood, most stigmatized, and pervasive diseases present in our society today. The reality is that 34.6 million Americans are living with diabetes, but only 28.7 million people of all ages––8.7% of the population––are diagnosed with either Type I or Type II [1]. According to the Centers for Disease Control, “for both men and women, prevalence of diagnosed diabetes was highest among American Indians and Alaska Natives (14.5%), followed by non-Hispanic Blacks (12.1%), people of Hispanic origin (11.8%), non-Hispanic Asians (9.5%) and non-Hispanic Whites (7.4%)” [1]. Type I Diabetes is an autoimmune disease in which the immune system of a patient who presents with Type I attacks the beta-cells of the pancreas and the patient’s pancreas stops producing insulin, therefore this type of diabetes is called Insulin-Dependent Diabetes [2]. Typically patients with Type I Diabetes will be diagnosed earlier in childhood. This disease has a genetic component, but it does not occur from birth. It is believed that there is a viral origin that causes Type I Diabetes [3]. Type II Diabetes is the form of diabetes that is closely associated with obesity and weight with the majority of people with diabetes, roughly 90%, having Type II Diabetes [4]. Type II Diabetes occurs when patients cannot produce enough insulin to regulate the sugar (glucose) present in their blood or when patients have issues with insulin’s cellular function, as it does not adequately stimulate glucose uptake.
In the patients that I worked with at Charleston Retina Consultants, I observed the clinical manifestation of diabetes, as well as its prevalence and lack of regulation. As part of the screening process, I had to intake patients and ask them what their blood sugar was and only one out of ten of them would know their hemoglobin A1C, which “measures your average blood sugar levels over the past 3 months.” Hemoglobin A1C is a common way to test and diagnose prediabetes and diabetes. For diabetics, blood sugar must be closely regulated because if it is too high or too low there could be serious clinical complications, including nephropathy, neuropathy, retinopathy, cardiovascular issues, diabetic coma, diabetic ketoacidosis, and so on [6]. The condition that we were treating through vitreoretinal injections was retinopathy, which manifests clinically in different forms.
I saw this first-hand when I performed Optical Coherence Tomagraphs on patients, which is a scan of a cross-section of the retina, which allows ophthalmologists to measure the thickness and help with diagnosing retinal diseases [7]. I could see Diabetic Macular Edema––the most common cause of retinal complications that we treated––in the abnormal swelling in the macula that can affect the fovea on the scans that I was taking [8]. Of the patients we saw in a day experiencing retinal complications, a high percentage of them had diabetes. The disease causes abnormal blood vessel growth in the retina leading to vision impairment. This lifelong struggle leads to constant doctor’s appointments, where patients are poked, prodded, injected, and moved in and out of doctors' offices is, to put it lightly, not fun. For patients, they dread the doctors' office because it seems to be a place filled solely with negatives––bad news, suggestions to change lifestyle, fatphobia, and unpleasant experiences.
In my experience, I would prepare patients for injections which they had been receiving monthly for years. These patients would be on their fortieth, sixtieth, and seventy-eighth injection, which involves them coming into clinic and getting their eyes dilated, numbed, repeatedly examined with bright lights, and then numbed again with lidocaine, followed by injections which can be painful upon injection, as well as cause pain in patients for the next couple of days. Furthermore, each of these visits prevent patients from being able to go to work, take care of their children, and provide a constant burden upon them. In many of these situations, these injections improve vision significantly and patients will stop injections once their conditions, whether macular edema or another retinal condition, however, the ethical scenario of sustainment applies to patients who receive injections to preserve vision without the hope of significant improvement [10].
This preservation or sustainment as opposed to improvement places this form of treatment in a category which is separate and distinct from care which improves conditions. To place this in the traditional principles of ethical and clinical categories of beneficence, nonmaleficence, autonomy, and justice [11]. The ethical scenario in this situation is one of beneficence––does the patient benefit enough from the maintenance of vision as opposed to the financial and physical toll of receiving indefinite monthly injections? This scenario highlights the importance of considering that health may not be the only factor that should be considered when providing care to patients. Furthermore, in this situation, patients have received injections for such an extended period without hope of improvement, yet still have vision that can be classified as significantly impaired.
This is where I believe the ethics of sustainment should be applied in clinical practice that we should consider care to sustain a non-life threatening condition, such as macular edema, in a different bioethical context. Sustainment should be defined as treatment or elective procedures that are maintaining current conditions without the likelihood of significant improvement. For instance, a patient who has received sixty injections to preserve already sub-optimal vision to prevent blindness. Sustaining this condition is not only expensive but incredibly stressful as patients must attend appointments on a monthly basis which prevents them from earning income and pursuing other opportunities.
I got to chat with one patient about the trip she planned to go to Australia. I shared with her my love of kangaroos and excitement for her to experience all that Australia had to offer. As we chatted, she opened up to me about this being her last “hoorah” so to speak––that she and her husband were both terminally ill and their life was short. I expressed my sympathy, and wished her the best on her trip––I talked about how important I thought it could be for her to spend the time she had left living life to its fullest. This patient was terminally ill and receiving painful and taxing injections to preserve her vision in the last years of her life.
This is the prime ethical scenario in which I believe that the ethics of sustainment must be applied, a patient who has no hope of improved vision and suffers other conditions or circumstances which complicate treatment, should have their care decided in a separate field of consideration. I believe that when you are sustaining and not improving in specific non-life threatening situations that it is incumbent upon providers to prioritize the wellbeing of the patient, which may not always be a biological or physiological improvement. Therefore, in a situation of sustainment, you need to consider multiple factors including financial and personal well-being. This concept applies neither to life-saving or highly-likelihood of improvement procedures, only procedures that sustain a condition. The notion of considering the ethics of sustainment is a piece that clinical bioethics doesn’t concentrate on as it's largely concerned with life-or-death situations. However, a significant amount of clinical care doesn’t fall into this category and thus, other ways of thinking such as this must be explored and considered in greater depth.
Sources:
Centers for Disease Control and Prevention. (2022, September 30). Prevalence of diagnosed diabetes. Centers for Disease Control and Prevention. Retrieved January 20, 2023, from https://www.cdc.gov/diabetes/data/statistics-report/diagnosed-diabetes.html
Mayo Foundation for Medical Education and Research. (2022, July 7). Type 1 diabetes. Mayo Clinic. Retrieved January 20, 2023, from https://www.mayoclinic.org/diseases-conditions/type-1-diabetes/symptoms-causes/syc-20353011
Filippi, C. M., & von Herrath, M. G. (2008). Viral trigger for type 1 diabetes: pros and cons. Diabetes, 57(11), 2863–2871. https://doi.org/10.2337/db07-1023
Mayo Foundation for Medical Education and Research. (2022, November 19). Type 2 diabetes. Mayo Clinic. Retrieved January 20, 2023, from https://www.mayoclinic.org/diseases-conditions/type-2-diabetes/symptoms-causes/syc-20351193
Centers for Disease Control and Prevention. (2022, September 30). All about your A1C. Centers for Disease Control and Prevention. Retrieved January 20, 2023, from https://www.cdc.gov/diabetes/managing/managing-blood-sugar/a1c.html
Mayo Foundation for Medical Education and Research. (2022, August 11). Diabetic coma. Mayo Clinic. Retrieved January 20, 2023, from https://www.mayoclinic.org/diseases-conditions/diabetic-coma/symptoms-causes/syc-20371475#:~:text=Blood%20sugar%20that's%20either%20too,toxic%20acids%20known%20as%20ketones.
Turbert, D. (2022, May 26). What is optical coherence tomography? American Academy of Ophthalmology. Retrieved January 20, 2023, from https://www.aao.org/eye-health/treatments/what-is-optical-coherence-tomography
Diabetic macular edema (DME). Prevent Blindness. (2022, October 12). Retrieved January 20, 2023, from https://preventblindness.org/diabetic-macular-edema-dme/
The American Society of Retina Specialists. (n.d.). Intravitreal injections. Intravitreal Injections - Patients - The American Society of Retina Specialists. Retrieved January 20, 2023, from https://www.asrs.org/patients/retinal-diseases/33/intravitreal-injections
Nizawa, T., Kitahashi, M., Baba, T., Iwase, T., Kubota-Taniai, M., Hattori, Y., Shiko, Y., Kawasaki, Y., Iwase, T., Sato, T., Ogawa, S., Sugawara, T., & Yamamoto, S. (2021). Improvements of Retinal Sensitivity after Intravitreal Injection of Aflibercept in Eyes with Neovascular Age-Related Macular Degeneration with or without Polypoidal Choroidal Vasculopathy. Ophthalmologica. Journal international d'ophtalmologie. International journal of ophthalmology. Zeitschrift fur Augenheilkunde, 244(4), 347–360. https://doi.org/10.1159/000517187
Varkey B. (2021). Principles of Clinical Ethics and Their Application to Practice. Medical principles and practice : international journal of the Kuwait University, Health Science Centre, 30(1), 17–28. https://doi.org/10.1159/000509119