Ethics is a branch of philosophy that deals with right and wrong. It is a system of principles and rules of conduct recognized and accepted by a specific group or culture. Bioethics covers a broad set of possible topics such as ethical standards and moral problems created by the practice of medicine, ethical issues in neuroscience, protection of research participants, privacy issues raised by genome sequencing, and research with children.
Clinical ethics is a discipline or methodology for considering the ethical implications of medical technologies, policies, and treatments, with special attention to determining what ought to be done (or not done) in the delivery of healthcare (Brock & Mastroianni, 2013).
Law is the set of enforced rules under which a society is governed. Laws can be created either through legislation, which is called statutory law, or by opinions written by judges in court cases, which is called case law (Center for Bioethics, n.d.).
The law establishes the rules that define a person’s rights and obligations. Law also sets out penalties for those who violate these rules. Laws are changed frequently to reflect societal needs. In every society laws often have a strong moral standard (Porter, 2001). Two of the most common types of potential legal actions against healthcare providers for injuries resulting from healthcare involve lack of informed consent and violation of the standard of care (Brock & Mastroianni, 2013).
Ethical practice guidelines have been around since the early days of nursing. An ethical pledge for nurses—a modified version of the Hippocratic Oath called the Nightingale Pledge—was developed by Lystra Gretter in 1893. The first code of ethics for nurses was suggested by the American Nurses Association in 1926 and adopted in 1950 (Lyons, 2011).
For generations, nurses have taken seriously their Code of Ethics and their role as those who “promotes, advocates for, and strives to protect the health, safety and rights of the patient.” The American Nurses Association maintains the current code of ethics for the nursing profession, called A Code of Ethics for Nurses with Interpretive Statements. Last modified in 2001, it contains nine provisions, which detail “the ethical obligations and duties of every individual who enters the nursing profession (ANA, 2001). The code is currently under revision, with the revised code of ethics expected in late 2014.
Codes of ethics are broadly written and are not meant to serve as a blueprint for ethical decision making. They are intended to provide a reminder of standards of conduct: that the nurse has a duty to keep confidentiality, maintain competence, and safeguard patients from unethical practice (Lyons, 2011).
The language of biomedical ethics is applied across all practice settings, and four basic principles are commonly accepted by bioethicists. These principles include (1) autonomy, (2) beneficence, (3) nonmaleficence, and (4) justice. In health fields, veracity and fidelity are also spoken of as ethical principles but they are not part of the foundational ethical principles identified by bioethicists.
Autonomy is an American value. We espouse great respect for individual rights and equate freedom with autonomy. Our system of law supports autonomy and, as a corollary, upholds the right of individuals to make decisions about their own healthcare.
Respect for autonomy requires that patients be told the truth about their condition and informed about the risk and benefits of treatment. Under the law, they are permitted to refuse treatment even if the best and most reliable information indicates that treatment would be beneficial, unless their action may have a negative impact on the well-being of another individual. These conflicts can set the stage for ethical dilemmas.
The concept of autonomy has evolved from paternalistic physicians who held ethical decision-making authority, to patients empowered to participate in making decisions about their own care, to patients heavily armed with Internet resources who seek to prevail in any decision making. This transition of authority has been slower to evolve in the geriatric population but, as the baby boomers age they are asserting this evolving standard of independence. Autonomy, however, does not negate responsibility. Healthcare at its foundation is a partnership between the provider and the recipient of care. Each owes the other responsibility and respect.
Beneficence is the act of being kind. The beneficent practitioner provides care that is in the best interest of the patient. The actions of the healthcare provider are designed to bring about a positive good. Beneficence always raises the question of subjective and objective determinations of benefit versus harm. A beneficent decision can only be objective if the same decision were made regardless of who was making it.
Traditionally the ethical decision making process and the ultimate decision were the purview of the physician. This is no longer the case; the patient and other healthcare providers, according to their specific expertise, are central to the decision-making process (Valente, 2000).
Nonmaleficence means doing no harm. Providers must ask themselves whether their actions may harm the patient either by omission or commission. The guiding principle of primum non nocere, “first of all, do no harm,” is based in the Hippocratic Oath. Actions or practices of a healthcare provider are “right” as long as they are in the interest of the patient and avoid negative consequences.
Florence Nightingale spoke of nonmaleficence more than 150 years ago when she reminded us that “the very first requirement in a hospital is that it should do the sick no harm”—and proceeded to set up systems and practices that are still being used today to enhance the quality and safety of patient care (Hughes, 2008).
Patients with terminal illnesses are often concerned that technology will maintain their life beyond their wishes; thus, healthcare providers are challenged to improve care during this end stage of life. Patients may even choose to hasten death if options are available (Phipps et al., 2003). The right of the individual to choose to “die with dignity” is the ultimate manifestation of autonomy, but it is difficult for healthcare providers to accept death when there may still be viable options.
Here we see the principle of nonmaleficence conflicting with the principle of autonomy as the healthcare providers desire to be beneficent or, at the least, cause no harm. The active choice to hasten death versus the seemingly passive choice of allowing death to occur requires that we provide patients with all the information necessary to make an informed choice about courses of action available to them.
A complicating factor in end-of-life decisions is patients’ concern that, even if they make their wishes clear (eg, through an advance directive), their family members or surrogates will not be able to carry out their desires and permit death to occur (Phipps et al., 2003). Treating against the wishes of the patient can potentially result in mental anguish and subsequent harm.
Justice speaks to equity and fairness in treatment. Hippocrates related ethical principles to the individual relationship between the physician and the patient. Ethical theory today must extend beyond individuals to the institutional and societal realms (Gabard & Martin, 2003).
Principles of Justice
To each person:
Justice may be seen as having two types: distributive and comparative. Distributive justice addresses the degree to which healthcare services are distributed equitably throughout society. Within the logic of distributive justice, we should treat similar cases similarly, but how can we determine if cases are indeed similar? Beauchamp and Childress (2001) identify six material principles that must be considered, while recognizing that there is little likelihood all six principles could be satisfied at the same time.
Looking at the principles of justice as they relate to the delivery of care, it is apparent that they do conflict in many circumstances; for example, a real-life system that attempts to provide an equal share to each person is distributing resources that are not without limit. When good patient care demands more than the system has allocated, there may be a need for adjustments within the marketplace.
Comparative justice determines how healthcare is delivered at the individual level. It looks at disparate treatment of patients on the basis of age, disability, gender, race, ethnicity, and religion. Of particular interest currently are the disparities that occur because of age. In 1975 Singer related bias as a result of age to gender and race discrimination and referred to the practice as ageism (Gabard & Martin, 2003). In a society where equal access to healthcare does not exist, there is a continuing concern about the distribution of resources, particularly as the population ages and the demand for services increases.
The first wave of baby boomers is signing up for Medicare now, and the health spending projections for the next decade are significant (Keehan et al., 2008). Thorpe and Howard (2006) found that there has been an increase in medication use of 11.5% in the past decade just for the medical management of metabolic syndrome, an age-associated complex of diseases. McWilliams and colleagues (2007) found that Medicare beneficiaries who were previously uninsured, and who enrolled in Medicare at age 65, may have greater morbidity, requiring more intensive and costlier care, than they would have had they been previously insured. The cost to the system of low levels of care is extensive. Recognizing the number of uninsured Americans who will ultimately come into the Medicare program with potentially greater morbidity, it appears that the demands of justice in the healthcare system will continue to increase.
Equitable allocation of resources is an ever-increasing challenge as technology improves and lives are extended through natural and mechanical means. All of these factors place greater stress on an already inefficient and overburdened healthcare system and results in more difficult ethical decisions about workforce allocation and equitable distribution of financial resources.
Veracity is not a foundational bioethical principle and is granted just a passing mention in most ethics texts. It is at its core an element of respect for persons (Gabard, 2003). Veracity is antithetical to the concept of medical paternalism, which assumes patients need to know only what their physicians choose to reveal. Obviously there has been a dramatic change in attitudes toward veracity because it forms the basis for the autonomy expected by patients today. Informed consent, for example, is the ability to exercise autonomy with knowledge.
Decisions about withholding information involve a conflict between veracity and deception. There are times when the legal system and professional ethics agree that deception is legitimate and legal. Therapeutic privilege is invoked when the healthcare team makes the decision to withhold information believed to be detrimental to the patient. Such privilege is by its nature subject to challenge.
Fidelity is faithfulness, or loyalty. It speaks to the special relationship developed between patients and their healthcare provider. Each owes the other loyalty; although the greater burden is on the medical provider, increasingly the patient must assume some of the responsibility (Beauchamp & Childress, 2001). Fidelity often results in a dilemma, because a commitment made to a patient may not result in the best outcome for that patient. At the root of fidelity is the importance of keeping a promise, or being true to your word. Individuals see this differently. Some are able to justify the importance of the promise at almost any cost, and others are able to set aside the promise if an action could be detrimental to the patient.
The moral conscience is a precursor to the development of legal rules for social order.
Brock & Mastroianni, 2013
Ethics has been described as beginning where the law ends. Both share the goal of creating and maintaining social good (Brock & Mastroianni, 2013). Ethics never stands alone, nor does the law. Some issues that have both ethical and legal components include:
The Carnegie Foundation describes the educational components needed for work as a professional as involving three essential areas: (1) intellectual training to learn the academic knowledge base and the capacity to think in ways important to the profession; (2) a skill-based apprenticeship of practice; and (3) an apprenticeship to the ethical standards, social roles, and responsibilities of the profession, through which the novice is introduced to the meaning of an integrated practice of all dimensions of the profession, grounded in the profession’s fundamental purposes (Hughes, 2008).
The Affordable Care Act is an example of a set of laws developed with a number of ethical issues in mind. Due to preexisting conditions or simple unavailability, tens of millions of people have been unable to purchase health insurance at any cost. The law addresses this inequity by requiring most U.S. citizens and permanent residents to purchase health insurance (Lachman, 2012). The law also addresses insurances choices and costs, and puts into place certain rights and protections for consumers.
Recall the ethical concept of distributive justice discussed in the previous section, which addresses the degree to which healthcare services are distributed equitably throughout society. The Affordable Care Act was developed largely in response to this ethical concept, namely the situation in which many millions of people have no insurance and up to $100 billion of care is cost-shifted onto patients who are able to pay or who are on an existing insurance plan. This shift raised the average annual health insurance premium roughly $1,000 for every insured family (Lachman, 2012), which raises additional ethical issues of equity and fairness.
The Affordable Care Act also touches on the ethical principles of beneficence (kindness) and nonmaleficence (do no harm) by setting up affordable healthcare exchanges and plans. The exchanges are an integral part of the complicated issue that is created when healthcare is mandated. It is based on the concept that mandating health insurance without addressing affordability would cause significant harm to individuals and families who are struggling financially (Lachman, 2012).
Although ethics attempts to identify all available options to a given problem and consider the implications of each option, the law often places limits on those options. This intersection of the law and ethic often creates conflict and raises these important questions (Porter, 2001):
Ethical dilemmas arise when there are equally compelling reasons both for and against a particular course of action and a decision must be made. It is a dilemma because there is a conflict between the choices. Usually one action, though morally right, violates another ethical standard. A classic example is stealing to feed your family. Stealing is legally and ethically wrong, but if your family is starving it might be morally justified (Noel-Weiss et al., 2012).
Kidder calls this a “right vs. right” dilemma. When evaluating the alternatives, both courses of action have positive and negative elements. Right vs. right is an ethical dilemma, whereas right vs. wrong is identified as a moral temptation (Kidder, 1996).
Working through an ethical dilemma until a satisfactory conclusion is reached, making decisions that lead to good actions, and avoiding negative consequences and regret are the foundational principles of ethical practice (Noel-Weiss et al., 2012).
Research suggests that ethical conflicts are on the rise in the nursing field, due both to the increasing complexity of care and to scientific and technological advances. Several studies that sought to analyze ethical conflicts that arise in critical care units noted that the ethical conflicts experienced by critical care nurses stem from three main sources:
In the first area, the decision-making process comes up against issues such as the difficulty of ensuring informed consent, a failure to respect confidentiality, and failure to protect the patient’s interests. The second area involves the provision of certain treatments in which nurses experience conflict when asked to administer treatment they regarded as overly aggressive, when pain management seemed to be deficient, or when it became necessary to limit the use of life support procedures. In the third area—workplace dynamics—conflict arises when nurses were not fully involved in the decision-making process or if they feel the work environment made it difficult to consider questions of a bioethical nature (Falcó-Pegueroles et al., 2013).
Situations that create ethical conflicts highlight the difficulty involved in making the right decision. Andrew Jameton identified three types of ethical conflicts that nurses may experience in the clinical setting that can cause distress (Falcó-Pegueroles et al., 2013):
In a situation of moral uncertainty the professional is unsure whether or not an ethical problem exists, or recognizes that there is such a problem but is unclear about the ethical principles involved. A moral dilemma can arise when the professional must choose between two or more morally correct principles, each of which would lead to a distinct course of action (Falcó-Pegueroles et al., 2013).
Finally, moral distress is felt when the professional recognizes the ethical principles involved and knows the right thing to do but is constrained by something or somebody from acting accordingly. Judith Wilkinson has described an additional type of ethical conflict, which she calls moral outrage, a type of ethical conflict in which the professional experiences a sense of impotence in the face of an immoral action performed by others (Falcó-Pegueroles et al., 2013).
The primary function of a decision is to commit to some sort of action: a decision reduces to zero the uncertainty about what to do. Primary uncertainty is the uncertainty associated with “what to do.”
To arrive at a decision, called secondary uncertainty, the decision maker must be motivated by some sort of pressure and must work to reduce uncertainty about the pros and cons of a selected course of action. Secondary uncertainty includes uncertainty about the situation, goals to be achieved, and available options or courses of action. Once secondary uncertainty has been reduced, commitment to a chosen option can occur. As soon as a commitment is made, a decision is made, and uncertainty falls to zero (Brecke & Garcia, 1998).
While exploring how to improve a person’s decision-making skills, researchers have categorized decision makers as novice, advanced, competent, or expert:
Tim is a 79-year-old man with moderate to severe Alzheimer’s disease who was admitted from his home to a rural nursing home for long-term care. Tim is fit and slim, walks well with good balance, and is able to do his activities of daily living with some supervision. Tim is also a “wanderer,” is hard of hearing, and is very confused about where he is. Three days after he was admitted Tim was found missing from his room when the nursing assistant brought dinner. On this particular cold, dark, and foggy evening there were three nursing assistants and one licensed vocational nurse on duty (acting as the charge nurse). In addition, there was one physical therapist working late to finish up on the day’s paperwork. The facility had 51 residents, some of whom had moderate to severe dementia, plus eight acute rehab patients.
As soon as Tim was reported missing, a search was begun. Two of the nursing assistants refused to join the search outside because they were afraid of the dark. They also felt that they should not leave the rest of the residents alone. The charge nurse, PT, and one nursing assistant began searching while the two remaining nursing assistants rummaged through drawers for flashlights. Five flashlights were found but all had dead batteries and no fresh batteries were available. The charge nurse and the PT agreed not to call 911 or notify the facility administrator or the family. They felt confident that they would quickly find Tim and get him back to his room for dinner.
After a search of about 30 minutes Tim was found on his back in a shallow stream next to the horse pasture that abuts the nursing home. He had fallen, slid under a barbed wire fence down a 10-foot muddy slope and was stuck, unable to stand. He was in jeans and a T-shirt; the temperature outside was 38 degrees.
The charge nurse and the PT discussed whether to call 911 but decided against it. They used a doubled sheet to pull Tim up the slope and assisted him back to his room. He appeared to be unharmed. Tim’s nursing assistant cleaned him up, found dry clothes, and encouraged him to eat his dinner. The charge nurse decided not to document all the details of Tim’s outside adventure and the PT finished her paperwork and went home.
On Saturday morning, the PT, feeling uncomfortable about what had happened, called the state department of health and reported the incident. She felt certain that if nothing was done that this would happen again. On Monday morning, the LVN who had been in charge during Tim’s escape called the PT into a supply closet and loudly dressed her down for calling the state. The PT wasn’t sure what to say so she just listened and silently went back to work, ashamed that she had gotten the LVN in trouble. A representative from the state reviewed the incident but no action was taken against the facility.
Tim’s case is an example of a situation in which ethical and legal issues intersected. Although they did their best to find Tim and make sure he was okay, the nurse, PT, and nursing assistants cooperated to cover up a serious, even life-threatening incident. This is a serious ethical lapse, violating the principle of veracity (truthfulness) at the very least. They also violated the principle of nonmaleficence (do no harm) when they dragged Tim up out of the stream without checking for injuries.
From a legal standpoint, the nursing home is required to have an adequate number of qualified staff on duty at all times to meet the needs of its residents. They are legally and ethically at fault for inadequate staffing, lack of policies and procedures for handling residents with dementia, lack of staff training, failure to keep equipment in working order, and failure to make the necessary changes once the incident was reported.
Ethically, the facility still cannot comply with the ethical principle of nonmaleficence (do no harm) because after this incident they continued to admit residents with Alzheimer’s disease but failed to address staffing, training, equipment, and safety issues related to residents suffering from dementia.
The state department of health visited the nursing home about a week later. They found no wrongdoing.
It is certainly undeniable that our current medical system is complex, with many options available for treatment of illness and disease. Unfortunately, many of these new techniques and medications are only available to certain segments of society and only in certain parts of the world, creating vast health disparities.
Although ethical issues related to global health disparities might be expected to feature prominently in bioethics discussions, mainstream bioethics is often marked by attention to bioethical issues largely affecting the world’s more affluent countries. Steven Miles writes that the “soul of bioethics” has been rendered unhealthy partly by its tendency to engage more with issues of assisted reproduction and gene therapy than with the growing number of medically uninsured, with minority and migrant health, with the links between health and human rights, or with the political and economic barriers preventing developing countries from gaining greater access to essential medicines (Rennie & Mupenda, 2008).
Many effective health interventions have not been implemented in low-income countries and millions of deaths and disabilities occur due to conditions we already know how to prevent or treat. For example, several global initiatives have sought to increase access to AIDS treatment in low-income countries. But HIV-positive individuals in low-income countries may suffer from other health conditions for which there is no local or affordable treatment; their homes may be destroyed by natural disasters or civil strife; they may be children orphaned from their dead parents, or have to take care of such children; and they may have more regular access to antiretroviral treatment than they do to the food that helps them absorb it. Anecdotal reports of AIDS patients selling their drugs to buy other medications for their family members or for food indicate that there may be differences in perception about health-related needs and priorities on the part of global initiatives and local communities (Rennie & Mupenda, 2008).
Bioethics has tended to gravitate towards the agonizing dilemmas of patients, family members, and clinicians at an individual level. High-technology interventions in particular have a prominent profile in bioethics discussions. Bioethics also tends to align itself with whatever topics are currently considered scientifically fundable. The focus of bioethicists on novel technologies may be related to the potential market value of these technologies (Rennie & Mupenda, 2008), which has troubling ethical implications.
The question is whether it is desirable, or even ethically justified, for bioethics to continue to reflect a “90/10” gap in which 90% of discussions on bioethics in the literature and popular media revolve around issues affecting 10% of the world’s population. Bioethical questions related to urban poverty, drug use, immigration, occupational hazards in the workplace, or environmental injustice make only rare appearances in peer-reviewed bioethics journals, course syllabi, and conferences. These areas of scholarship—tightly linked to issues of social justice—may fall below the radar of many bioethicists due to the social, class, and racial barriers between many practitioners of bioethics and the most affected communities (Rennie & Mupenda, 2008).
Bioethical challenges in the low-income countries have much in common with those in underserved or marginalized communities within more affluent nations, arising from historical inequities, limited access to healthcare, racial discrimination, and gender violence. For this reason, greater attention to ethical issues arising from biomedical research, clinical practice, and public health interventions “far away” might have a positive effect on bioethics “closer to home,” potentially expanding the horizons of the field and enhancing its social relevance (Rennie & Mupenda, 2008).