The Basics of Bioethics

Robert M. Veatch, Laura K. Guidry-Grimes

• Publisher: Routledge
• Year: 2019
• ISBN:
  9780429017544
• Topic: Philosophy
• Subtopic: Philosophy History & Theory
• Edition: 4

The Basics of Bioethics, Fourth Edition offers an easy-to-follow introduction to this dynamic field, intended for healthcare professionals, teachers, students, and anyone interested in bioethics. Accessible and enjoyable for readers of all backgrounds, the book contains numerous cases—including ones that recently have dominated international headlines—to help anchor the broader discussion. The text is suitable for use in short courses in schools of medicine, nursing, and other health professions; continuing professional education; various undergraduate departments; and adult education. Chapters are organized around common moral themes in order to help readers understand the values and other connections that tie together different positions in bioethics. This fourth edition adds a new chapter on alternative frameworks in bioethics, including narrative ethics and casuistry, feminist approaches, care ethics, and virtue ethics. Due to significant advances in genetics and reproductive possibilities, this new edition devotes a full chapter to each. The combined teaching, research, and clinical experience of the two authors helps make this edition current with the evolving field of bioethics, while still embedding the major issues in a systematic framework that allows readers easily to navigate the larger field.

Key Changes to the Fourth Edition:
• An added chapter on new and emerging approaches in bioethics, including those based on virtue ethics, casuistry and narrative ethics, feminist ethics, and care ethics
• Updates throughout the book based on developments in ethical theory and new medical research
• Revisions and updates to the Learning Objectives, Key Terms, Bibliographies, and URLs
• The addition of multiple recent case studies, including:

• Jahi McMath

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• an undocumented patient who needs a rule bent

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• a pediatrician who turns away unvaccinated patients

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• a minor eligible for pediatric bariatric surgery

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• a daughter suing a hospital for non-disclosure of her father's Huntington's diagnosis

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• CRISPR-edited newborn babies

1

A Map of the Terrain of Ethics

Learning Objectives for this Chapter

(1)Describe the key concepts of ethics.

(2)Identify four basic levels of moral discourse, and explain how they relate to one another.

(3)Diagnose potential sources of moral disagreement regarding a complicated case or topic.

(4)Compare top-down and bottom-up approaches to ethical problem-solving, and explain common responses to these approaches.

Case 1
Jahi McMath and a Confusing Case of Life and Death

On December 9, 2013, at Children’s Hospital, Oakland, CA, 13-year-old Jahi McMath underwent a surgical procedure for sleep apnea that included removal of her tonsils, adenoids, and soft pallet and other interventions. For reasons that are unclear, she suffered a large blood loss resulting in a heart attack and loss of blood flow to her brain. On December 11 and 12 she was examined by physicians Robert Heidersbach and Robin Shanahan who determined that, based on accepted medical standards, her brain had irreversibly lost all functions. Her heart and other body functions were being maintained on a ventilator. She was dead by neurological criteria according to California law. Normally, at this point, death would be pronounced, and supporting medical interventions would cease.

Jahi’s mother, Latasha Winkfield, held a different view, citing what she claimed was her firm Christian belief that as long as the heart was beating, her daughter was alive. Moreover, she believed that all treatment, care, and nutrition to a body that is living were required, including treating it with respect and seeking to encourage its healing. She also claimed that she was aware of patients who had been declared brain dead and emerged to regain their cognitive ability and even fully recover.

The hospital and its doctors informed Mrs. Winkfield that, according to California law, Jahi was dead without possibility of recovery and that they intended to disconnect the ventilator. After Mrs. Winkfield sought an injunction requiring that the ventilator support continue, the parties agreed to an examination by Dr. Paul Fisher, the Chief of Child Neurology at Stanford University School of Medicine, who concluded that she was brain dead according to accepted medical standards. The court then denied Mrs. Winkfield’s petition for the medical treatment to continue in the hospital.

After further discussion, the parties agreed that, after Jahi was pronounced dead, her body would continue to be ventilated, would be released to the Alameda County Coroner, and removed from the hospital. The coroner then released the body—still being ventilated—to her mother. With the public protests outside the hospital and media coverage, Jahi’s family was able to receive substantial financial contributions through the website GoFundMe from people in the public who believed that Jahi was still alive and deserved further life-sustaining therapies at another hospital. In the news and across social media, concerns were expressed that the family was being treated unfairly due to their race, religious convictions, or both. Eventually, Jahi was transferred to the state of New Jersey where her body continued to receive medical support.

Some confusion has remained years later about the status of Jahi in New Jersey. The law there stipulates that the irreversible loss of all functions of the brain constitutes death, but an exception is made when the patient provides a statement holding, based on religious belief, that death does not occur until there is irreversible loss of heart function. The law, however, does not explicitly permit parents to make such a claim on behalf of a minor. Nevertheless, most people assume that, while in New Jersey, Jahi was considered still alive because of this unique provision. Her treatment was paid for at least in part by Medicaid, and since Medicaid only pays for living patients, this implies she was considered still living. On the other hand, no publicly documented pronouncement was made that the California death certificate was negated.

In the years since Jahi was declared dead in California, there has been endless dispute about whether Jahi met the criteria for death based on brain function loss when she was pronounced dead and whether she continued to meet those criteria in the years her body was ventilated.

Since then, distinguished experts representing the family have claimed that, at some point, she stopped meeting criteria for those tests.¹ The attorney for Mrs. Winkfield has released video purportedly showing that Jahi on occasion responded to her commands to move her hand and foot. On the other hand, those defending the claim that Jahi continues to have no brain function (and therefore could not respond to commands) claim that spontaneous muscle movements can cause such a response. Some have questioned whether the standard accepted brain function tests adequately measure the loss of all functions of the entire brain. Physicians representing Mrs. Winkfield claimed that Jahi had, after death was pronounced, undergone puberty, which, they claim, is evidence that some hypothalamic brain function remained. Tests for hypothalamic function have never been part of the standard testing for brain death.

We are left with many critical questions. Did she meet the accepted medical criteria for death based on brain function loss in December of 2013 and, if she did meet those criteria at that time, did she ever regain any brain functions? Is there value in permanently unconscious human life? How much authority should physicians have over parents’ objections in a case like Jahi’s? Is New Jersey right to allow dissent from the legal definition of death based on brain function loss? Should a family be able to opt for a religiously based minority view of what it means to be dead? If so, should Medicaid or other public funds be used to pay for the medical care needed to sustain the body?

Jahi McMath suffered a cardiac arrest secondary to liver failure on June 22, 2018. For her family and the public at large, her case continues to provoke a number of critical questions at the heart of medicine and ethics.²

The physicians, Jahi’s mother, and everyone else involved in this case face some difficult and controversial ethical choices. They need to determine the proper definition of death, the role of parents and other surrogates in deciding about medical care for a minor, the proper ethics of terminal care, the morality of using scarce medical resources, and the role that minority religious perspectives ought to play in modern, secular medical care. In order to sort out these disparate and complex ethical issues we need a map of the ethical terrain: an overview of the kinds of ethical issues at stake and the terminology for labeling the disputes. This chapter will provide a basic map of that terrain. Once that overview is in place, we can begin sorting out the issues facing Jahi McMath’s parents and physicians.

The Levels of Moral Discourse

The Level of the Case

Often in bioethics, the discussion begins with a case problem. Someone faces a concrete moral dilemma or two people disagree about what in a specific situation is the morally appropriate response. Some people may mistakenly think that ethical choices do not occur all that often in medicine. They think that an “ethics case” is an unusual, special event. In fact, ethical and other value choices occur constantly, but, fortunately, in almost all situations the ethically correct course is obvious. The decision can be made with little or no conscious thought. Ethical choices have still been made—even if the decision-maker does not even realize it. He or she can rely on well-ingrained moral beliefs and get by quite adequately. Occasionally, however, the choice does not come as easily. As in the case of Jahi McMath, the choice requires more careful, conscious thought. The physician faced with a choice may turn to colleagues or to a hospital ethics committee for advice. A lay person may turn to friends or to a trusted religious or secular group for guidance.

One kind of advice may come in the form of mentioning other cases that seem similar, cases that have been resolved in the past. They may be in the form of a Biblical story or a legal case about which the culture has reached agreement. These agreed-upon cases are sometimes referred to as “paradigm cases.” Most people can agree that, in matters of ethics, similar cases should be treated similarly. In fact, one of the identifying characteristics of an ethical judgment (as opposed to a matter of mere taste or preference) is this awareness that if the relevant features are similar, then cases should be treated alike. As long as people can agree on what should be done in the paradigm case and can agree that the new case is similar in all relevant respects, they will be able to resolve their problem. This approach relying on paradigm cases is sometimes called casuistry. As seen in Figure 1, this is the lowest or most specific level of what can be considered the four major levels of moral discourse. This figure is a simplified version of the more elaborate map of the ethical terrain that appears at the front of this book.

Figure 1The Four Levels of Moral Discourse

Rules and Rights (Codes of Ethics)

But what if the basic ethics we learned as children does not settle the problem? What if we cannot agree on a paradigm case or cannot agree that our present problem is like the paradigm case in all relevant respects? We may, at that point, move to a second level of moral discourse, the level of moral rules and rights. Sometimes rules and rights tell us what is legal, but they may also describe what is ethical. Since not everything that is legal is also ethical (and not everything that is illegal is necessarily unethical), it will be important to note the difference. If a rule or a right is considered ethical, it will be seen as grounded in a moral system, an ultimate system of beliefs and norms about the rightness or wrongness of human conduct and character. Groups of rules or rights claims are sometimes called codes of ethics.

Jahi McMath’s physicians may consult the Code of Ethics of the American Medical Association to see whether that group considers it ethical to stop treatment in such cases. His parents might consult an Islamic code. Some of the parties in the dispute may bring out the Hippocratic Oath or a “patients’ bill of rights.”

Sometimes the parties to an ethical dispute may cite a rule-like maxim. “Always get consent before non-emergent surgery” or “a patient’s medical information must be kept confidential” are examples of such maxims. These rule-like statements are usually quite specific. A large number of them would be needed to cover all medical ethi...