By: Natalie L. Boehm, MBA, RBLP-T
What is Bioethics?
Bioethics is applied ethics focused on health care, medical science, and medical technology. Bioethics is often used as a synonym, and medical ethics is a related but narrower term used most often to refer to ethical problems in medical practice. (Vaughn, 2020)
Four Key Principles in Bioethics
According to the article, Importance of Bioethics in Healthcare, there are four key principles in bioethics:
- Autonomy: which is respecting a person’s right to make their own decisions.
- Beneficence: To treat people with dignity
- Non-maleficence: Do not inflict harm on people.
- Justice: To treat people fairly.
The Four Ethical Rules
According to the article, Importance of Bioethics in Healthcare, the four ethical rules cover the following:
- Veracity- telling the truth, respecting autonomy, and informed consent.
- Privacy- it’s the right of a person to remain private and not to disclose information.
- Confidentiality- this is sharing private information on a ‘need to know basis’ only.
- Fidelity- is maintaining the duty to care for all no matter who they are or what they may have done.
According to the article, Importance of Bioethics in Healthcare, philosophical theories include:
- Consequentialism- which is the taking the consequences of our actions into consideration. Utilitarianism is a type of consequentialism which explains what action has the greatest utility and have positive outcome.
- Deontology- it is based on our actions on a set of principles.
Bioethics and Epilepsy
While we are working towards improving care for patients with epilepsy, individuals with epilepsy have received high levels of discrimination and mistreatment throughout history. Some of the injustices included, but were not limited to are:
Brain surgery – without their consent, and for no apparent therapeutic reason, experiments were conducted on epilepsy patients through the means of brain surgery.
STD testing – U.S. government researchers infected a large population of Guatemalans with different types of sexually transmitted diseases without informing them or giving them the right to consent to be experimented on, and many of these Guatemalans had epilepsy.
Forced institutionalization – as with many disabilities and mental health conditions back in the day, family members of those who had been diagnosed would force them into care, not allowing them to leave until they had been deemed “cured”. Oftentimes, the staff was abusive, and the practices employed against the victims were simply cruel. Other times, epilepsy was assumed to be a form of possession where the patient was invaded with an ‘evil spirit’, so those who weren’t sent to hospitals were put under the care of their family’s religious affiliation.
Forced sterilization – in a time where misunderstandings of disabilities were rampant, eugenic ideologies had a firm grasp on many leaders in the world, and it spread to those with epilepsy as well who were sterilized against their will to prevent them from “transmitting” their condition to their children.
In the study, Bioethical management of patients with epilepsy: sex and age-related aspects, in Russia, between 2017-2019, 211 neurologists, and 265 pediatric neurologists were interviewed, focused on values and principles of bioethics during the treatment of patients with epilepsy. The study found:
60% of the interviewed followed the principles of respect for the private autonomy of patients and their human dignity.
55% of responders followed partner and negotiation models of interaction with patients.
Over 97% of these groups tried to follow the principles of bioethics.
More than 50% of them could not name classic and special principles of bioethics for their category of patients.
29% could not identify the type of model that they use in their work with patients.
75% of pediatric neurologists significantly lacked knowledge in the area of bioethics and practical skills in their application in patient management.
Many medical professionals have witnessed unethical practices throughout their careers and even during their education and training. In the article, Witnessing unethical conduct: the effects, in a survey of medical students attending a medical school in the United States, the survey concluded:
35% of first-year and 90% of fourth-year students witnessed unethical behavior.
In another survey in the U.S., 3rd and 4th-year students at six medical schools in Pennsylvania, 98% of students had heard physicians refer to their patients in a derogatory way and 61% had witnessed unethical incidents.
These actions result in the chances of medical students behaving improperly. In a survey of 303 students across all four years of medical education at a single medical school, about a third of the total sample said that derogatory comments made by physicians were “sometimes” or “often” appropriate. The more senior the students, the more likely they were to believe that such unkind comments were appropriate.
(Yamey and Roach, 2001)
Advocating for Better Care
If a patient experiences any unethical action by a medical professional, the following options are available to patients:
Patient Relations: hospitals and academic medical centers have a patient relations department to monitor and prevent unethical actions. Patients can call in and make a complaint to the hospital to start an investigation and have the proper actions taken to prevent future unethical actions.
Grievance: patients can contact their insurance companies and file a grievance if they are mistreated by their physician, nurse practitioner, or physician assistant.
State Medical Board: Patients can file a complaint with the state medical board if they have been mistreated by a physician or nurse. There is a state medical board for doctors and a state nursing board for nurses.
Patient Advocate: Patients have the right to seek help from a patient advocate. Larger academic organizations have patient advocates available for patients. Many non-profit organizations have patient advocates volunteering to help. Patients can also hire a patient advocate if needed.
Legal Assistance: if an unethical act takes place and if the patient has experienced any serious distress and/or damages, they have the right to seek legal advice from a licensed attorney to see if they have a valid claim.
Bioethics is applied ethics focused on health care, medical science, and medical technology. Bioethics is often used as a synonym, and medical ethics is a related but narrower term used most often to refer to ethical problems in medical practice.
It is important to know and understand the four ethical rules and how to apply them to your care.
There is a history of unethical practices being committed against patients with epilepsy. The healthcare system is working to decrease unethical actions, but there is much more work to do.
Studies have shown that many physicians do not know how to apply ethics when it comes to the care of their patients. Surveys have shown that many medical students have witnessed unethical and inappropriate acts but justify the actions of the physician committing the unethical act.
There are resources available for patients who have experienced unethical actions from medical professionals. Professionals such as patient advocates are available to help to prevent any unprofessional or unethical actions.
Benayoune, C. (2023). How we Spring Back from our Past. The Defeating Epilepsy Foundation Blog. Retrieved from: https://www.defeatingepilepsy.org/living-with-epilepsy-series/healthcare-history/
Kaculini, C. M., Tate-Looney, A. J., & Seifi, A. (2021). The History of Epilepsy: From Ancient Mystery to Modern Misconception. Cureus, 13(3), e13953. https://doi.org/10.7759/cureus.13953
Kissiov, D., Dewall, T., & Hermann, B. (2013). The Ohio Hospital for Epileptics-the first “epilepsy colony” in America. Epilepsia, 54(9), 1524–1534. https://doi.org/10.1111/epi.12335
Mikhalovska-Karlova, E.P. Bioethical management of patients with epilepsy: sex and age-related aspects. Epilepsy and paroxysmal conditions. 2020;12(2): 117-121. (In Russ.) https://doi.org/10.17749/2077-8333/epi.par.con.2020.039
Nadal, K. (2021). Why representation matters and why it’s still not enough. Psychology Today.
Spector-Bagdady, K., & Lombardo, P. A. (2018). From in vivo to in vitro: How the Guatemala STD Experiments Transformed Bodies Into Biospecimens. The Milbank Quarterly, 96(2), 244–271. https://doi.org/10.1111/1468-0009.12318
Taj, Rizwan and Khan, Asima (2018). “Importance of bioethics in healthcare,” Pakistan Journal of Neurological Sciences (PJNS): Vol. 13: Iss.1, Article 2. https://ecommons.aku.edu/pjns/vol13/iss1/2
Vaughn, L. (2020). Bioethics: Principles, issues, and cases. Oxford University Press.
What Makes Good Media Representation. (2022). You Press. Retrieved from: https://youpress.org.uk/what-makes-good-media-representation/
Yamey, G., & Roach, J. (2001). Witnessing unethical conduct: The effects. Western Journal of Medicine, 174(5), 355-356. https://doi.org/10.1136/ewjm.174.5.355-a