What Is Bioethics?

According to the Center for Ethics and the Humanities in the Life Sciences at Michigan State University, bioethics is “a shared, reflective examination of the ethical issues in healthcare, health science and health policy.” Although ethical standards have always existed in healthcare and medicine, the field of bioethics seeks to integrate our traditional understanding of what constitutes “good” care and “good science” with the issues introduced by advances in medicine and technology that have taken place over the last 50 years. 

The History of Bioethics

The emergence of bioethics as a formal discipline can be traced back to the mid-20th century, primarily catalyzed by breakthroughs in medical technology and research. In the 1950s and 1960s, medical advancements such as organ transplantation and the development of life-sustaining technologies, including artificial ventilation and kidney dialysis, highlighted the need for ethical guidelines in health care and health policy. These innovations raised complex questions about the definition of death, the allocation of scarce resources, and the balance between extending life and preserving its quality. 

Bioethics was further shaped by the infamous Tuskegee Syphilis Study, which came to public light in the 1970s. This research, officially known as the Tuskegee Study of Untreated Syphilis in the Negro Male, was conducted by Tuskegee University in conjunction with the United States Public Health Service between 1932 and 1972. It involved 600 African-American men from Macon County, Alabama, who were told they were being treated for “bad blood.” The primary aim of the study was to observe the natural progression of untreated syphilis. However, the men were not informed about the nature of their disease nor were they given the option of treatment. Even when penicillin was recognized as an effective treatment for syphilis in the mid-1940s, it was deliberately withheld from the subjects. The study came to an end only when its details were exposed by the media, triggering public outrage and an official investigation by an Ad Hoc Advisory Panel convened by the Assistant Secretary for Health and Scientific Affairs.

That investigation, in turn, led to the establishment of the National Research Act in 1974, and the subsequent formation of the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. Two years later, in 1976, the Commission published the Belmont Report, which established ethical principles and guidelines for research involving human subjects. These included the foundational principles or respect for persons (autonomy) beneficence, and justice. These principles continue to serve as a foundation for ethical conduct in human research today. 

The rise of consumerism in the late 20th and early 21st centuries also had a profound impact on bioethics. During the early part of the 20th century, medical advances had provided physicians with an unprecedented number of innovative treatments with which to treat and cure disease. Once nearly helpless against most common illnesses and injuries, doctors were suddenly armed with a wealth of newfound knowledge, and soon came to view their authority over medical decision making as absolute. In this paternalistic landscape, the goals, values, and preferences of patients were often ignored. 

During the late 1950s and early 60s, however, American consumers began to demand a greater say in decisions regarding their safety and well-being. Spurred by Ralph Nader’s scathing indictment of the automobile industry, “Unsafe at Any Speed, and the Kennedy administration’s support for consumer rights, the American public began to demand greater transparency from its institutions, and this extended to healthcare. The resulting patient rights movement focused on restoring respect and personal autonomy to individuals receiving care. As a result, several states enacted laws that required physicians to provide full disclosure on the risks and benefits associated with any proposed treatment and to obtain a signature to prove the patient understood what was disclosed. This led to the doctrine of “informed consent,” which is  legally required for most medical procedures in all 50 states. 

Today, bioethics plays a crucial role in guiding healthcare professionals and patients alike in making complex and morally nuanced decisions. With its focus on the ethical principles of autonomy, beneficence, and justice, bioethics ensures that medical advancements are balanced with respect for human dignity and rights. By contemplating questions surrounding medical research, end-of-life care, and reproductive technologies, bioethics provides a framework for navigating the ever-evolving landscape of healthcare with compassion and integrity.

The Scope of Bioethics

Bioethics is a complex and ever-evolving field that includes a number of different specialty areas. According to Michigan State University, some of these include:

Clinical Ethics 

Clinical ethics is a practical discipline that involves resolving disagreements or conflicts in the practice of health care. More specifically, clinical ethicists help resolve conflicts that arise when patients, families, and/or healthcare surrogates and health care providers disagree about what constitutes “the best” care. For example, patients or their surrogates may decline recommended medical care or demand care that providers believe would be of little or no benefit or create suffering unnecessarily. When these types of conflicts arise, a clinical ethicist can help:

• Clarify the patient’s and family’s values 
• Define and illuminate goals of care
• Promote honest, respectful communication between patients, their surrogates and the health care team
• Identify ethical issues 
• Recommend a course of action that is both ethically sound and acceptable to all involved

Health Policy

Health policy ethics involve decisions made by government entities in order to manage health care as a “public good”. In a perfect world, governments would ensure that quality healthcare was accessible to all while simultaneously controlling healthcare costs. But the world is far from perfect, so ethicists in the field of health policy examine questions related to equity in health care and the dilemma of ensuring that the healthcare system is morally just. Questions that arise in this area include:

• Is quality healthcare a right or a privilege? 
• Should patients be denied treatment because of an inability to pay? 
• Should society’s “healthy” assume the cost of caring for those less healthy than themselves?
• Should state governments have the option of denying Medicaid to poor adults? 
• How can providers assess the cost/benefit of novel treatments in a moral and ethical way?

Genetics 

Now that science has succeeded in SEQUENCING THE HUMAN GENOME, genetics has taken on an ever-increasing role in healthcare. The science of genetics is used in disease prevention, the diagnosis and treatment of certain illnesses and in reproductive decisions making. Some questions that may be addressed by genetic ethicists include:

• If genetic testing shows a patient to have a hereditary, incurable disease, is that person ethically obligated to inform other family members, sacrificing their right to privacy? 
• Do parents have a right to abort a fetus if a nonfatal genetic abnormality is detected in-utero? (This may also be a question for reproductive ethicists)
• How can the medical and scientific communities approach genetic testing in ways that balance individual rights with promotion of the public good? 

Precision Medicine

As highly effective but extremely costly targeted therapies for cancer are becoming more and more available, the ethics of precision medicine revolve around the dilemma of when to prescribe very costly drugs that may offer limited benefit. CAR-T CELL THERAPY, for example, is a new cancer treatment that has been shown to be extremely effective in about 50% of patients treated, but for others it may extend life for only a few months. In many cases, doctors have the ability to discern, using BIOMARKERS, which patients stand to benefit the most. Since CAR-T cell treatment costs over $450,000 per patient, the question arises: As a matter of policy, should these drugs be reserved only for those who stand to benefit the most? And how should “benefit” be quantified? 

Reproductive Ethics

Long an area of much debate, reproductive ethics addresses the ethical use of reproductive technologies such as in vitro fertilization, surrogacy, contraception and abortion, as well as general questions around maternal and fetal health.Some examples offered by MSU include: 

• Should a pregnant woman who is brain dead be kept alive on a ventilator to ensure her fetus survives?  
• Is it ethical to harvest eggs or sperm from a person after they are dead? 
• Is it ethical to destroy embryos?

Neuroethics

Over the past several decades, technologies have been developed that can have a profound effect on the functioning of the human brain. Neuroethicists focus on the ethical, social and legal issues that arise as these technologies become more available and their use more widespread. For example, neurostimulation has been proposed as a therapy for a variety of conditions, from memory issues to depression. How can society ensure that these  technologies are used in a sensitive, fair and ethical way? 

In addition to each of these specialized areas, bioethics is concerned in general with the concept of patient autonomy and shared decision-making, a model in which the patient and provider share information and together develop a plan of care. In its purest form, shared decision-making recognizes that there are two “experts in the room” — the physician, with their years of education, learning, and medical expertise, and the patient, whose values, desires and preferences carry equal weight in a discussion about goals of care.  

The Importance of Bioethics at the End of Life

Advances in medical care over the past century have drastically changed how and at what age people die. In 1900, the three leading causes of death in the United States were pneumonia, tuberculosis and diarrhea. Today, they are cancer, heart disease, and chronic lower respiratory diseases such as COPD. This shift from infectious causes of death to chronic conditions has helped to drastically improve the life-expectancy of all Americans, from 48 years in 1900 to 76.1 years in 2021. 

Other medical advances have changed the landscape of healthcare and how we view the end of life. Before 1960, CPR did not exist. If a person’s heart stopped beating and/or they stopped breathing, they simply died. Mechanical ventilators, which today are widely used in hospitals to support critically ill patients, were not invented until the mid-1950s. The first intensive care units in the country also came into being around that time. 

All of these technological breakthroughs add up to a new understanding of the practice of medicine and delivery of healthcare. Serious illnesses that once followed an inexorable, linear course are now much more fluid and unpredictable. People can be “dead” and then brought back to life. Life can be extended almost indefinitely with medicines, machines and expert care. And while few of us would wish to go back to a time when these options didn’t exist, these advances in healthcare have created complex bioethical questions about how, when and where people die. As Dr.Lydia Dugdale, associate professor of medicine at Columbia University, and the director of Columbia’s Center for Clinical Medical Ethics said in an interview with SevenPonds, “As any doctor or doctor-in-training will tell you, we care for many, many patients who end up lingering in the intensive care unit. From some of these patients’ perspectives, they are living a life worse than death. In some ways, the things that medicine has made possible can bring more suffering than death itself.”

Further, despite more widespread adoption of advance directives as a means of communicating end-of-life goals, these kinds of questions are rarely easy to resolve. Thus, one of the major roles of bioethicists is to help shape healthcare practices in a way that truly reduces suffering and ensures that providers honor and respect each individual’s wishes regarding how they wish to be cared for at the end of life. 

Ethical Issues at the End of Life

Providing care to persons at the end of life comes with many unique challenges. People who are living in the last stages of a terminal illness suffer in numerous ways, including:

• Physical suffering due to the disease process or treatment side effects 
• Loss of function (e.g. independence, enjoyable activities, satisfying relationships)
• Personal psychological factors (e.g., existential anxiety, depression, loss of a sense of purpose or meaning)
• Social and environmental factors (e.g., loss of contact with social network, availability of support)
• Spiritual factors (e.g., hopelessness, despair, fear of death or the afterlife)

Alleviating this suffering is of paramount importance to the medical team as well as to the patient and their surrogates. However, in many cases, conflicting needs and goals of care lead to ethical issues that make achieving this objective difficult. Some of the most common issues that arise include:

Communication Difficulties

Many patients cannot communicate effectively as death approaches, either due to clinical interventions (e.g.,a breathing tube); physical symptoms such as extreme weakness, confusion or shortness of breath; or the effects of symptom-relieving drugs. As a result, one-on-one communication between the patient and their care team becomes extremely difficult at a time when accurate and timely information-sharing is critical. Further, the patient’s surrogates may not be able to fully understand and process information due to the distress of watching their loved one’s suffering, whether that suffering is actual or perceived. These barriers to communication can present an ethical challenge when clinical decisions, such as whether to institute or forgo certain medical interventions, must be made.  

Symptom Management

Although it is not especially common, some patients at the end of life can suffer intractable pain that is very difficult to control. Additionally, about half of dying patients will experience a phenomenon known as “terminal delirium” or “terminal agitation,” during which they become disoriented, agitated and extremely unsettled. Some patients may actively hallucinate while others will cry out, moan, or thrash about in bed. Experts believe these are not signs that the patient is in pain but rather a neurological reaction in the dying brain. Nevertheless, these symptoms can be extremely difficult for family and loved ones to watch. 

In both of these scenarios, caregivers must balance the need to provide the dying patient (and their family) some measure of comfort with the risks of treating them with escalating doses of pain-killing or sedating drugs. Unfortunately, this ethical quandary often results in undertreatment of distressing symptoms and an overall poorer quality of death. 

Loss of Autonomy

Similar to broken communication, loss of autonomy can occur when the patient loses the capacity to make informed decisions due to advanced illness, unconsciousness or delirium. Even in situations where an advance directive or POLST is available, lack of clarity around goals of care is not uncommon, especially if surrogate decision-makers disagree with the wishes stated in the advance directive or POLST. In these situations, the medical team is often tasked with making difficult decisions that might conflict with the patients values and goals. This situation is often exacerbated by disagreement among family members about what the best course of action should be. 

Family Conflicts

Family conflicts can often arise during end-of-life care decisions, adding another layer of complexity and emotional strain to an already challenging time. These conflicts may stem from differing interpretations of the patient’s wishes, disagreements about the goals of care, or deep-seated familial tensions that resurface under stress. The high emotional stakes can create an environment ripe for discord, with family members battling over what they believe to be the best course of action for the patient. Such disagreements can pose an ethical issue for the healthcare team if the patient’s own wishes are not known. 

In summary, bioethics is a complex field that attempts to address the many ethical issues that arise in today’s ever expanding healthcare landscape. It applies to decision-making in many different aspects of science and medicine, including the many fraught and confusing situations that can arise at the end of life. 

Sources

“The Untreated Syphilis Study at Tuskegee Timeline”. U.S. Centers for Disease Control and Prevention. https://www.cdc.gov/tuskegee/about/timeline.html?CDC_AAref_Val=https://www.cdc.gov/tuskegee/timeline.htm

“The Belmont Report”. Office for Human Research Protections. https://www.hhs.gov/ohrp/regulations-and-policy/belmont-report/index.html 

“Informed Consent”. Cleveland Clinic. https://my.clevelandclinic.org/health/articles/24268-informed-consent 

“First complete sequence of a human genome”. National Institutes of Health. https://www.nih.gov/news-events/nih-research-matters/first-complete-sequence-human-genome 

“CAR T Cells: Engineering Patients’ Immune Cells to Treat Their Cancers”. National Cancer Institute. https://www.cancer.gov/about-cancer/treatment/research/car-t-cells 

“What are Biomarkers?”. Current Opinion in HIV and AIDS. https://pmc.ncbi.nlm.nih.gov/articles/PMC3078627/ 

“Life Expectancy in the U.S. Dropped for the Second Year in a Row in 2021”. U.S. Centers for Disease Control and Prevention. https://www.cdc.gov/nchs/pressroom/nchs_press_releases/2022/20220831.htm 

“Critical care – where have we been and where are we going?”. BMC. https://ccforum.biomedcentral.com/articles/10.1186/cc11500 

Expert Advice: My biggest piece of advice is that healthcare directives and POLST forms need to be discussed — both with someone in the medical profession, someone you know like a nurse or a doctor, so you understand exactly what kind of care of want or don’t want, and then also with the person who is going to be making those decisions for you, your decision-maker. Talk to that person too. It’s the biggest part of communication about your preferences.  Chris Wilson, RN, JD, bioethicist and patient advocate Community Healthcare Ethics.org Phone: (818) 389-8512   Email: chris@elderethics.net