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CHAPTER

13

Withdrawing Life Support and Organ Transplantation

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Defining Death

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Transplantation and Ethics

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Transhumanist Revolution?

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Withdrawing Life Support

Today it is quite possible to keep people breathing and their hearts beating even when they have permanently lost all the normal attributes of their “personhood”: the awareness of what is happening around them, thinking, and the ability to make decisions. When considering end-of-life issues, it is also common to hear people say things like, “I don’t want to be kept alive with a bunch of machines” or “I don’t want to be a vegetable.”
However, on the practical level, what do statements like those really mean? The availability of sophisticated life-support technology coupled with uncertainty about the status of an individual when his or her brain has no activity make statements like the ones above hard to address. In this chapter, we discuss our changing definitions of death: “clinical death” versus “brain death.” We also explore the issues at play when deciding to provide or withdraw mechanical ventilation (breathing), high-powered medications, artificial hydration (fluids), and nutrition (food). We also address questions like “When does an individual stop being a living person? When is it appropriate to withdraw life supports? When should we, or shouldn’t we, ‘harvest’ healthy organs from such individuals and transplant them in others who need them?”
DEFINING DEATH
The technological advances of the last quarter-century have challenged modern medicine, and indeed society, to rethink how it defines death. In previous eras, it was fairly easy to know when death occurred. It happened when such vital signs as heartbeat and respiration stopped. Although mistakes in determining death were sometimes made, signs such as the cessation of respiration and heartbeat, nonreactivity to light and pain, cool body temperature, stiffness followed by bloating, and the eventual signs of decomposition made the reality of death fairly clear. With the arrival of mechanical ventilators, first developed in the 1950s to deal with the polio outbreaks of that era, it became much harder to define death (Waisel & Truog, 1997; Magnus, Wilfond, & Caplan, 2015; Shaw, 2016; Lizza, 2018). Ventilators can artificially maintain patients who are unable to breathe on their own almost indefinitely. What’s more, the patients are warm and alive-looking, even when there is little or no brain activity.

Pictured here is a patient with tracheal intubation, done shortly before surgery. It involves placing a flexible plastic tube into the trachea. When done with severely compromised patients it can help sustain life for long periods of time.
The old method of determining death—observing the cessation of heartbeat and breathing—no longer worked. The traditional methods could still define clinical death—the presence of spontaneous breath and heartbeat, nonresponsiveness to pain and light, body cooling, the presence of rigor mortis, and body decomposition—however, defining this new phenomenon called brain death was far trickier (Magnus, Wilfond, & Caplan, 2015; Shaw, 2016; Lizza, 2018). The term brain death is now used to denote the irreversible cessation of the activity of the whole brain (brain stem and neocortex), the brain stem, or the higher brain (neocortex) only, depending on the expert doing the defining and the legal criteria used (Magnus, Wilfond, & Caplan, 2015; Shaw, 2016; Lizza, 2018). James Hughes refers to the two main camps as the “whole-brainers” and “neo-corticalists” (Hughes, 1995; Hughes, 2016; O’Connell, 2018). This may sound flippant or even disrespectful, but the consequences are actually very serious. The cost of care and availability of organs for transplantation are hot issues.
BOX 13.1
Miracle in South Africa: The First Heart Transplant
 
 
On Saturday afternoon, December 2, 1967, Ann Washkansky saw a crowd gathered at the scene of an automobile accident in Cape Town, South Africa. Little did she know then that her fate would become linked with the victims of that accident. Nearby was Groote Schuur Hospital, which was nestled in the hills above the accident scene. Ann was in the neighborhood in order to be near her husband, Louis Washkansky, who was a cardiac patient at the hospital. Louis was in bad shape. He had a grossly enlarged heart, congestive heart failure, diabetes, and coronary artery disease. His skin blackened from lack of circulation, he was dying and he knew it. His cardiologist, Dr. Christiaan Barnard, who had put together a heart transplant team, approached Mr. Washkansky about his willingness to consider a transplant. Washkansky, who knew he was out of options, agreed (Ankney, 1998; Gustaitis, 2002).
The victims of the accident were Denise Ann Darvall and her mother. Denise had come to this part of Cape Town with her mother and father for a shopping trip. Coming out of a bakery, they were struck by a speeding car. Her mother died instantly. When Denise reached Groote Schuur Hospital, her heart was still beating but she was brain dead. Dr. Barnard approached her father, Edward Darvall, who gave his permission to use his daughter’s heart in what would become the first successful human heart transplant. Louis would live for 18 days before succumbing to pneumonia (Ankney, 1998; Gustaitis, 2002).
TRANSPLANTATION AND ETHICS
Despite Mr. Washkansky’s death, heart transplantation now seemed a plausible medical procedure. In addition to Dr. Barnard’s team in South Africa, heart transplant teams from around the world were poised to do precisely what Barnard did (Ankney, 1998; Brink et al., 2017). With the “miracle in South Africa,” a threshold had been crossed. The door was open for heart transplantation on a big scale. Indeed, it’s estimated that over 4,000 heart transplants are now performed each year worldwide (Lund et al., 2015). With that first miracle in South Africa, it became a proven scientific fact that a human heart could be stopped, transplanted, and started up again in a different body. Indeed, from that first transplant in South Africa through June 30, 2014, 120,992 transplants had been performed worldwide (Lund et al., 2015). With the possibilities unfolding, it also seemed clear that healthy hearts would be needed. Would taking the beating heart from a comatose patient constitute homicide? This was a question that also concerned Dr. Barnard before doing that first transplant. Barnard was careful to wait until Denise’s heart actually stopped and he had declared death before proceeding. He feared that, if he didn’t, he could be accused of homicide. He had good reason to be concerned.
The Dead Donor Rule
Within a few months of Dr. Barnard being hailed a hero for performing the world’s first heart transplant, Dr. Juro Wada performed the first heart transplant in Japan (Masahiro, 2001). Instead of acclaim for the achievement, however, he was accused of unlawfully causing the death of both the donor and the recipient (Kerridge, Saul, Lowe, McPhee, & Williams, 2002; Masahiro, 2001). According to Japanese bioethicist Morioka Masahiro, Dr. Juro’s actions were officially regarded as an act of illegal human experimentation and an example of poor judgment in declaring death (Masahiro, 2001).
Since then, policymakers and medical professionals alike have insisted that donors be declared dead according to recognized criteria before attempting to perform a transplant (Kerridge et al., 2002). This would become known as the dead donor rule (Kerridge et al., 2002). This rule establishes the legal and ethical principle that says organ retrieval in itself may not be the cause of death (Robertson, 1999). Redefining death in terms of brain functioning, then, is the only possible way to increase the pool of transplantable organs (Arnold & Youngner, 1993; Truog, 2003; Youngner & Arnold, 1993).
The Harvard Criteria
Almost immediately after Barnard’s success in South Africa, the medical community in the United States seems to have anticipated the need for a consensus on a definition for brain death. Dr. Henry Beecher, who was an anesthesiologist at Harvard Medical School, approached the dean of the medical school and asked him to convene a panel of experts to discuss the situation of “hopelessly unconscious” patients. This panel, which included ten physicians, an attorney, a theologian, and a historian, was called the Ad Hoc Committee of Harvard Medical School to Examine the Definition of Brain Death, or the Harvard Committee for short (Beecher, 1968; Beecher & Dorr, 1971).

FIGURE 13.1  The Harvard Ad Hoc Committee Criteria for Determining Brain Death.
Source: Based on Beecher, 1968.
The Harvard Committee established four criteria, now called the Harvard criteria, for determining when someone was brain dead (Beecher, 1968). See 
Figure 13.1
. The first three of the Harvard criteria are similar to the traditional indicators for clinical death: unreceptiveness and unresponsiveness; lack of spontaneous respiration and muscle movement; and absence of reflexes (e.g., to light and pain) (Beecher, 1968). The last criterion specifically relates to activity within the brain itself—the lack of electrical impulses in the brain. You may have noticed that the Harvard ad hoc committee adopted a “whole brain” definition of brain death, which includes the functioning of the brain stem (responsible for regulating involuntary life-sustaining activities) as well as the neocortex (associated with higher mental functions) (Beecher, 1968).
Uniform Death Determination Act
After the initial flurry of interest in heart transplantation in the late 1960s, professional interest in doing heart transplants waned, largely owing to problems of tissue rejection (Badone, 2004). The recipient body would recognize donor tissue as foreign. In 1981, when the immune suppressant cyclosporine came on the market, the rejection of donor tissue could be effectively managed. Interest in performing heart transplants resumed. Although the “Harvard criteria” were regarded as reliable, concern about a definition for brain death persisted. It soon became clear that a better consensus definition was needed.
In 1981, the medical consultants to a U.S. presidential commission issued a report recommending the use of criteria that would equate brain death with the integration of the organism as a whole (President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, 1981; Kerridge et al, 2002; Magnus, Wilfond, & Caplan, 2014; Lewis et al., 2018). The commission arrived at a definition of brain death that emphasized the role of the brain as the organizer and regulator of integrated bodily functions. At the end of the day, the President’s Commission, like the Harvard Committee before it, had adopted a whole brain definition of brain death. It recommended death be declared when all brain functions ceased “irreversibly.” The recommendations of the Commission, along with the reasoning of recent court decisions and input from the American Medical Association, the American Bar Association, and the National Conference of Commissioners on Uniform State s, were grafted into a proposal for the Uniform Determination of Death Act (UDDA). The Act was intended to serve as a model in the United States. It contains two alternative criteria for declaring death when the determination is made in accord with “accepted medical standards” (Center for Bioethics, 1997a; Magnus, Wilfond, & Caplan, 2014; Lewis et al., 2018):
1.   Irreversible cessation of spontaneous circulation and respiration.
2.   Irreversible cessation of all functions of the entire brain.
Although the UDDA became a model, jurisdictions in the United States were never formally required to adopt it. In practice, however, it was enacted by over half the states. The remaining jurisdictions enacted legislation or relied on court decisions that used similar criteria (Center for Bioethics, 1997a; Magnus, Wilfond, & Caplan, 2014; Lewis et al., 2018). Like the Harvard criteria, the UDDA recognizes the cardiopulmonary standard for defining death, but it also provides an alternative to use in those cases where traditional criteria don’t seem to apply—that is, when vital functions are artificially maintained.
Brain Stem Criteria
The brain stem is a small structure, about two and a half inches in length, that extends from the spinal cord to the base of the brain. Small in physical size, it nevertheless performs vital functions. Among them are breathing, heartbeat, alertness, and arousal. While the United States and other parts of the English-speaking world use “whole brain” definitions of brain death, as described previously, the United Kingdom and many other parts of the English-speaking world define brain death as having occurred when a competent medical authority determines that brain stem functioning is irreversibly gone (Conference of the Medical Royal Colleges, 1979; Kerridge et al., 2002; Machado, 2003; Magnus, Wilfond, & Caplan, 2014). The criteria, first proposed by Mohandas and Chou in Minnesota (1971), emphasize the role of the brain stem as critical to the integration of all body functions. Proponents of the criteria (e.g., Pallis, 1983, 1985) argue that, since the brain stem is essential to body integration, death should be equated with the irreversible loss of its functioning (Kerridge et al., 2002; Magnus, Wilfond, & Caplan, 2014).
Neocortical Criteria
The cortex, usually referred to as the neocortex, is the large, outer portion of the brain. It is responsible for higher-thinking functions. Neocortical brain death occurs when the neocortex no longer functions (Laureys, 2005; Kelly, 2017). Often, the brain stem remains intact, leaving the person in a persistent vegetative state (PVS) (Zeman, 1997; Brisson et al., 2014; Bender et al., 2015; Andrew, 2016). As of 2016, approximately 30,000 patients in the U.S. existed in a PVS (Andrew, 2016). In contrast to whole brain and brain stem definitions, advocates of neocortical definitions are less interested with whether or not the brain is able to regulate or integrate bodily functions, and are more concerned with those mental activities most essential to being human. Robert Veatch, a bioethics pioneer and advocate for a neocortical definition, credits Henry Beecher, of Harvard Committee fame, with identifying the following qualities as essential characteristics of personhood: personality, conscious life, judging, reasoning, acting, enjoying, and worrying (Veatch, 1976, 1993a).
Neocortical death can occur in an otherwise healthy person when there is a lack of blood supply (called ischemia) and oxygen (called hypoxia) to the brain (Cranford, 1988; Brisson et al., 2014; Bender et al., 2015). Common causes are heart attack, pulmonary failure, near-drowning, and traumatic brain injury (Andrew, 2016). The loss of blood flow to the brain for four to six minutes is generally sufficient to cause extensive damage to the brain (Cranford, 1988). After experiencing loss of blood flow and oxygen, the person will frequently be in a coma, which by definition is caused by damage to the brain stem (Cranford, 1988). Because the brain stem controls choking and swallowing reflexes, long-term brain stem damage commonly results in death owing to respiratory infection (Cranford, 1988). When a heart attack causes loss of blood flow and oxygen to the brain, the survival rate is low, even when CPR is attempted (DeGeorgio & Lew, 1991; Iqbal et al., 2015).
Because the brain stem is more resilient to ischemia and hypoxia than the cortex, the resulting loss of vital functions may be temporary (Andrew, 2016). When the cortex is permanently damaged but the brain stem functions, it’s possible for the individual to remain in a PVS, often for years, so long as he or she is given nutrition and fluids. Adopting a neocortical definition of brain death would mean these individuals could be considered brain dead, and therefore possible organ donors. Indeed, one source points out that using the “higher-brain” criteria creates two new potential categories of “heart-beating” donors: those who exist in a PVS and anencephalic infants—newborns who have intact brain stems but lack a healthy neocortex (Moskop, 2000; Nakagawa et al., 2017).
This seems an appropriate place to reflect on the meaning of the terms brain death, whole brain death, brain stem death, neocortical brain death, PVS, coma, locked-in syndrome, and dementia. Ronald Cranford (1988), a neurologist and a leading contributor to the discussion of these topics (e.g., Cranford, 1978, 1984, 1990; Katz et al., 2002, 2018), comments that even members of the medical community are prone to misuse them. He suggests that doing so leads to confusion and uncertainty among laypeople and professionals alike. See the terms in 
Table 13.1
, which are based on his work (Cranford, 1988; Laureys, Gosseries, & Tononi, 2015).
As you can see from reviewing 
Table 13.1
, each of the terms used to describe brain death and unconscious states relates to distinct conditions and the functioning (or lack thereof) of the brain stem and neocortex. The terms coma and persistent vegetative state seem to relate to the same thing, but Cranford (1988) wants us to understand they are different. Comatose people will die relatively soon because of brain stem damage. Patients in a PVS may survive almost indefinitely because their brain stems are relatively intact, yet they will have lost all those brain functions we previously said are hallmarks of being human.

TABLE 13.1

Terms Related to Brain Death, Coma, and the Persistent Vegetative State

Term

Description of the Condition to Which It Applies

Brain death

The irreversible cessation of the activity of the whole brain (brain stem and neocortex), the brain stem, or the neocortex (higher brain) only.

Whole brain death

Both neocortical and brain stem functioning stops although breathing is supported artificially.

Brain stem death

Brain stem ceases to maintain vital functions although activity in the neocortex may persist. The patient is unreceptive and unresponsive—total unawareness and unresponsiveness to external stimuli, even to pain.

Neocortical death

See persistent vegetative state, below.

Persistent vegetative state

The brain stem functions but the neocortex is no longer active. This is also known as neocortical death or eyes-open unconsciousness. It can persist for many years.

Coma

A sleep-like, eyes-closed, state of unconsciousness caused by brain stem damage. It is a temporary state that will result in death within months if brain stem functioning doesn’t return.

Locked-in syndrome

The patient has cognitive (neocortical) functioning but does not appear conscious because the person is unable to move or communicate.

Dementia

Occurs when the neocortex loses its functioning over time. The process will result in death but the process tends to be very long and protracted. One of the best known types of dementia is Alzheimer’s disease.

Source: This table is based on Cranford, R. E. (1988). The Persistent Vegetative State: The Medical Reality (Getting the Facts Straight). The Hastings Center Report, 18(1), 27–32
The following questions emerge from the preceding discussion: “Does the loss of consciousness mean the loss of personhood, with all this implies? Is the person truly dead? If so, can the person’s vital organs be ‘harvested’?” For Cranford (1988), the answer is yes. For the rest of society, it’s not so clear. Indeed, the debate on the proper definition of death and brain death is continuing.
Although 
Table 13.1
 might help clarify the meaning of terms that are often misused or misunderstand, it can be all too easy to lose sight of the human condition when engaged in academic dialog. If you were someone who had a loved one in this condition, the subject would be far from academic. In doing field research for the first edition of this book this author interviewed the mother and grandmother of a young man who had been declared brain dead after a tragic accident (Kemp, 2001). Included here is a summary of that interview.
James, a young man who took risks, shot himself in the head playing “Russian roulette.” As a result, he was transported to a major trauma center, where he was diagnosed as brain dead (see box below, “He Was the Center of Everything”). For James’s mother and grandmother, the idea that their son and grandson was really dead was hard to accept.
BOX 13.2
He Was the Center of Everything
 
 
When I arrived at Philomena and her mother’s home, a neighbor was in the dining room area conversing in Spanish with her mother. “I’m of mixed Spanish–Native American heritage,” Philomena explained. The neighbor didn’t speak much English, and they were about the only other Spanish speakers in the area. During the first part of the interview, her mother spoke with the neighbor while Philomena began telling their story. Philomena explained that this was hard for her. She’d thought about it all the previous night, she said, wondering how to explain it. “It was stupid circumstances,” she said.
James was 20 years old. A graduate of an area high school with a reputation for excellence, he was a handsome young man whom everyone in his large extended family liked to be with. “They come over now,” Philomena commented with a smile, “and they tell me how boring it is over here compared to the way it used to be. ‘He’s gone,’ I tell them. ‘He was the center of everything.’” James had a good job, a car, and lots of friends. He lived at home and enjoyed the companionship of his mother and grandmother, she explained. He loved Mama’s cooking and talking with Grandma. Philomena and her mother told me they both raised James. “I was only 15 when I had James, so she [pointing to her mother] had to teach me how to be a mother,” Philomena told me. “She really raised both of us.”
James was interested in the military and guns, perhaps because of a favorite uncle who was in the army. He also seemed to have a preoccupation with the grim reaper. “He wanted to get a tattoo of the grim reaper, and he’d draw him all the time. He had these grim reapers all over his room,” Philomena said. “Like maybe he knew he was going to die.” They went on to tell me that there were some other unexplained forebodings of James’s death. They recalled how once they had all decided to play with a Ouija board. Everyone asked the Ouija board when they were going to die. “He asked the Ouija board when he was going to die. It said 19, from a gunshot.” He turned 20 in June and died in October.
James was at a friend’s home with four other young people. They were drinking and he had a gun. He removed the bullets and was showing the other kids the gun, passing it around and “dry shooting” the gun. The gun came back around and he put the bullets back in just before a girl wanted a closer look. He took the bullets out again. One of the girls swore to Philomena at the hospital that they saw six bullets in James’s hand when he showed them the gun. They must have been talking about how to end your own life. Philomena related, “He said, ‘This is how you do it’ (she demonstrated by putting her index finger into the soft skin under the jaw). He pulled the trigger, the gun fired, and bullet went into his brain.” James was kept functioning for a time using mechanical ventilation, but Philomena related that she was told, “He’s brain dead.” Someone asked her to consider donating selected tissue and organs. She agreed, but commented that even now it’s hard to believe he is really dead. “He looked alive,” she said.
The issues of the proper definition of death and brain death remain unresolved for bioethicists. Indeed, close study reveals that there is nearly always at least some residual activity even when brain death seems clear (Laureys, Gosseries, & Tononi, 2015). Because of this evidence, bioethicists such as Robert Veatch (1993a; Veatch & Ross, 2015) and Robert Truog (1997, 2016) argue that the concept of whole brain death is no longer useful. Truog suggests abandoning it, returning to the old cardiopulmonary definition, and letting go of the dead donor rule. He would like to see physicians make full disclosure about the nature of the vegetative condition and ask families for permission to harvest the organs of their loved ones and allow them to die. Robert Veatch, on the other hand, prefers adopting a neocortical definition of brain death. Indeed, rapid technological advances continue to nudge the dialog into uncharted territory, which is addressed next.
TRANSHUMANIST REVOLUTION?
Considering the questions that have been raised as a result of the various definitions of brain death, you may have an appreciation of what a leap it would be to adopt a neocortical definition of brain death. Skeptics warn that adopting it could put us on the “slippery slope” of taking life from those most in need of protection. They warn that, by deliberating on withholding and withdrawing life support, the idea of pulling the plug on severely demented or retarded individuals starts to sound rational, putting society close to, if not actually at the point of, accepting euthanasia, thereby devaluing the sanctity of human life.
Considering the life-and-death stakes, critics also express concern that commercial interests could come into play, making the sale of vital organs a lucrative business by providing financial incentives to organ “harvesters” (potentially at the expense of “donors”). On a practical level, the question arises about how to dispose of breathing “cadavers” with beating hearts, if, that is, they are to be considered truly dead (Angell, 1994).
Not balking at the criticisms of neocortical definitions, James Hughes (1995) comments that the current whole brain definition of death is an unwieldy, historical compromise. Reviewing how the Harvard criteria and the UDDA came into being, he suggests that the whole brain definition was, in the final analysis, a purely pragmatic one. It was easier to operationalize (determine when brain death occurred). It erred on the side of preserving life. Perhaps most important of all, it was the most radical definition the public would accept.
According to Hughes (1995), the whole brain definition may have been a necessary step in human progress. He predicts, however, that this definition will ultimately unravel as technological developments create unprecedented opportunities to repair, replace, and manipulate body and brain tissue. Hughes clearly wants society first to move toward adopting a neocortical definition of death and then to go beyond it (1995). He is one of a group of people allied with a movement called transhumanism, which sees technology as our chief hope to transcend our bodily limitations. (For a discussion, see, for example, Allen, 2017; Bostrom, Dafoe, & Flynn, 2016; Dvorsky, 2004; Elliott, 2003, 2014; Flynn, 1994; Huxley, 2015; Koch, 2010; More, 1994, 2013; Pilsch, 2017.)
Far from endorsing euthanasia—the deliberate act of ending life—transhumanists want to find ways to enhance and extend it. They see the human body as a vital but fallible organism, which is nevertheless necessary as a host for human personality and consciousness. They are not interested in advancing neocortical definitions in the hopes of harvesting transplantable organs from “heart-beating cadavers.” Rather, transhumanists are interested in human consciousness and using technology to enhance human intelligence, repair bodies, and extend human life. Reminiscent of TV’s Bionic Man, they see a day when science will be able to create super intelligent human beings, with bodies capable of enormous feats, who will be able to live many times the span of those living today.
Hughes (1995, 2004) and other transhumanists see some of these technologies as existing now, at least in crude form—for example, using stem cells in neurogenesis, nanotechnology, neural-computer prostheses, and cryonic suspension. In one essay, Hughes (2004) reviews a number of developments. Among these is research that demonstrates that infusions of stem cells (primitive brain cells that form in the brain stem) can be used to repair damaged brains (Kozorovitskiy & Gould, 2003). With respect to neural-computer prostheses, he notes that scientists have designed chips that can be implanted in brain-damaged patients so that they can communicate through an external computer, bypassing damaged neural pathways. He and other transhumanists point to the possibility of cryonic suspension—freezing human heads or whole bodies—so they can be “reanimated” later, when technology is capable of repairing whatever problems may have caused their demise.
Most relevant to the discussion of defining death, transhumanists speak of taking human personalities and memories from the minds of living persons and “uploading” them, to use computer lingo, onto new “platforms,” perhaps something like specialized hard disks (Allen, 2017; Bostrom, Dafoe, & Flynn, 2016; Dvorsky, 2004; Elliott, 2003, 2014; Flynn, 1994; Huxley, 2015; Koch, 2010; More, 1994, 2013; Pilsch, 2017). Residing on these new platforms, the consciousness of persons could continue to exist almost indefinitely—conceivably able to reflect, interact, and grow. In this kind of “postbiological” model, they might “live” and eventually “die” elsewhere than in a human body, giving a new twist to terms like “residing on a hard drive,” “sparked up,” and “pulling the plug.”
WITHDRAWING LIFE SUPPORT
With the advent of life-supporting technology, new ethical issues surfaced, and with them, a relatively new field called bioethics evolved. It concerns itself with issues of withholding or withdrawing life supports, especially ventilation, nutrition, and fluids (Quill et al., 2014). The first time the issue was brought to light with the general public was with the publicity surrounding the case of Karen Ann Quinlan, which is briefly summarized here.
BOX 13.3
The Case of Karen Ann Quinlan
 
 
On the night of April 15, 1975, for reasons that are not clear, Karen Ann Quinlan stopped breathing for at least two 15-minute periods. Reports say she ingested alcohol and had taken tranquilizers. Friends tried to give her mouth-to-mouth resuscitation but their efforts failed. She was taken by ambulance to nearby Newton Memorial Hospital. When examined, she had a temperature of 100 degrees, her pupils would not respond to light, and she didn’t react to even deep pain. While her doctors saved her life, Karen would exist in a “chronic persistent vegetative state.” She would eventually regain minimal brain activity, but it wasn’t enough to regulate her breathing. She couldn’t breathe without the help of a ventilator. There was no known treatment that could cure or improve her condition. Experts said she would never regain the ability to think or interact in a meaningful way. Her parents asked the doctors to remove the ventilator so she could die naturally. When they refused, her parents filed suit. The New Jersey Supreme Court would ultimately hear the case, and in 1976, they decided in favor of the parents (70 NJ 10 [1976] Supreme Court of New Jersey).
This case was the first to establish the rights of patients, or their proxies, to make end-of-life health care decisions. In a twist of fate, she began to breathe on her own when the respirator was removed. She would live in a PVS at a nursing home until she died about ten years later, in 1985.
Robert Veatch was the first research associate for the Hastings Center, a think-tank devoted to issues in bioethics. He recalls the day when they got a call at the Hastings Center from a young lawyer from a legal aid office, Paul Armstrong (Veatch, 1993b). Armstrong had himself been approached by the parents of a young woman who had been rendered permanently unconscious and who was on a mechanical ventilator. The parents asked for the ventilator to be turned off, but the physician, Dr. Robert Morris, insisted he had the right and duty to continue life support indefinitely. The parents were Joseph and Julia Quinlan. Karen Ann was their daughter. As Veatch recalls, the case became a symbol of the ethics debates on withholding and withdrawing life support.
Since then, other cases have made their way through various U.S. courts. The decisions of these courts have given direction to the standards for withholding and withdrawing life support in the United States. For a summary of these key decisions and the precedents they established, refer to 
Figure 13.2
.
As reflected in key court decisions, the most difficult ethical cases often involve withholding or withdrawing life support from patients who have been rendered permanently unconscious but who are capable of prolonged survival (in a PVS) (Center for Bioethics, 1997b). As we discussed in the previous section, cases of PVS involve severe neocortical damage with much less damage to the brain stem. The individual is thereby unconscious and incapable of higher cortical functions, but the brain stem keeps the heart beating and the lungs breathing. The question then becomes what should be done with the individual and who should decide.
In the West, societal values, considerable experience gained with cases involving persons in a PVS, and key court decisions have each helped foster an emerging consensus about how to handle cases such as this. To summarize, it’s been affirmed that individuals have the right to make choices about their own care, to refuse life support, including nutrition and fluids; for surrogates to make decisions for them when they are not able to do so for themselves; and for physicians to use terminal sedation, now more commonly called palliative sedation, to relieve any discomfort there might be during the dying process, even if it might hasten the process (Caraceni, 2016; Quill & Byock, 2000).
The principles that have been used to answer questions about how to deal with cases in which a person resides in a PVS reflect the cultural and professional values that have been adopted by society. Among them are the principles of autonomy, nonmaleficence, beneficence, and justice (Beauchamp, 2016; Gillon, 1994, 2003; Gillon & Lloyd, 1994; Rousseau, 2001). In addition to these, the competing value of respect for the professional integrity of the field of medicine is sometimes cited as a factor that must also be considered (Center for Bioethics, 1997b; Lee, 2017). Whereas medicine has an interest in fighting disease and prolonging life, using life-support technology to do so may be at odds with the rights of patients and can create emotional and financial hardships for families.

FIGURE 13.2  Key Court Decisions on Withholding and Withdrawing Life Support.
Source: Compiled from Lo, Dorbrand, Wolf, & Groman, 2002; Luice & Alpers, 2000; McCormick & Veatch, 1980; Rafflin, 1991; Sharma, 2004.
The principle of autonomy relates to the prerogative of competent adults to make informed choices about their own care; it is well established by various court decisions. Nonmaleficence refers to the avoidance of doing harm, as reflected in the often-quoted Latin expression primum non nocer, “first do no harm.” Nonmaleficence is rooted in the Hippocratic Oath of the medical profession. Its companion principle, beneficence, calls on human beings to take the next step, to actively endeavor to do that which is good. Justice, a concept often equated with fairness, can be described as the obligation to distribute scarce resources equitably, respect human rights, and honor laws that contribute to the social good (Beauchamp, 2016; Gillon, 1994; Gillon & Lloyd, 1994; Mark et al., 2015; Wahlster et al., 2015).
Although the state may have interests that conflict with the value of autonomy (especially the preservation of life and the protection of the integrity of the health care professions), U.S. courts have been generally consistent in ruling that the individual’s right to autonomy should prevail. This includes the right to be free from unwanted medical intrusions—such as ventilation, fluids, and nutrition—that are consistent with the person’s values, desires, and goals. The preeminent place that autonomy now holds in U.S. jurisprudence is grounded in common law and the right to privacy guaranteed by the U.S. Constitution.
In Canada, brain death is often defined as “according to accepted medical practice” (Shemie, Doig, & Belitsky, 2003). While the standards vary across provinces and territories in Canada, the whole brain definition is widely used (Lazar, Greiner, Robertson, & Singer, 1996). The procedures for defining brain death may differ for each hospital, but the guidelines published by the Canadian Congress Committee on Brain Death and the Canadian Neocortical Care Group serve to provide a professional measuring stick for making them (Shemie et al., 2003). As in the United States, the Canadian courts often get involved when there’s a dispute about the appropriateness of withdrawing life support.
In the U.S., there are three traditional standards for making decisions about terminating life support, which are also consistent with the law (Center for Bioethics, 1997b). In order of priority, they are:
1.   Subjective standard: Oral or written instructions given by the patient before losing decision-making capacity. If the person has designated a proxy decision-maker, the proxy is regarded as making decisions on behalf of the afflicted person.
2.   Substituted judgment standard: A determination of what the patient would have wanted in the present circumstances, based on an understanding of the patient’s prior preferences and value system.
3.   Best interests standard: A determination of what is in the patient’s best interests when the patient’s preferences are unknown.
Although the subjective standard confers considerable autonomy to the individual, it isn’t without its limits, especially when the individual hasn’t made his or her wishes clearly known. A landmark case illustrating this is that of Nancy Cruzan, who suffered severe brain injury in an auto accident in 1983 (Villaire, 1992). By 1986, her family realized that she would remain in a PVS so long as artificial feeding was continued. They asked that the feeding be stopped. As a result, the case found its way into the legal system. The case was filed in Missouri. Initially, Nancy’s family received authorization to end the feeding but the state appealed. (As an interesting aside, the controversial former United States Attorney General John Ashcroft was the governor of the state during this era.) The matter was then heard by the Missouri Supreme Court, which overturned the lower court’s ruling. The issue became a landmark case when it found its way to the U.S. Supreme Court, which refused to overturn the Missouri Supreme Court’s decision. The U.S. Supreme Court did reaffirm, however, the right of patients to make decisions about life support, but ruled that the state also had the authority to require “clear and convincing” evidence about these wishes. This became known as the Missouri Rule (other states have the option of establishing their own rules). The case ultimately went back to the Missouri trial court. The Cruzans presented additional evidence and testimony. This time, the state didn’t contest and the family won their motion. The feeding tube was removed. Twelve days later, on December 26, 1990, Nancy died. Her grave marker is inscribed as follows:
■  ■  ■
Born: July 20, 1957
Departed: January 11, 1983
At Peace: December 26, 1990
■  ■  ■
The “clear and convincing” standard established by the Missouri Rule essentially requires an advance directive, often called a living will, or the testimony of witnesses able to attest that before the person became incapacitated he or she had made explicit statements about not desiring specific forms of life support in particular circumstances. In this society, which some argue is still a death-denying one, it might be a stretch to think the citizenry will sign living wills or make the kind of declaration to friends and family required by the standard. Indeed, it’s now estimated there are between 10,000 and 20,000 individuals who exist in a PVS in various long-term care facilities throughout the United States. Nancy Cruzan’s father, Joe Cruzan, and her sister, Chris Cruzan White, promote public awareness. White pursues this work through the Cruzan Foundation, which she founded.

FIGURE 13.3  Summary of Provisions of the Patient Self-Determination Act.
Source: This figure is based on 101st Omnibus Reconciliation Act of 1990, Public 101–508 [section] 4751 (1990).
As with the Karen Ann Quinlan story, the Cruzan case attracted considerable publicity. Indeed, the heart-wrenching ethical issues got the attention of an influential person—Nancy’s own Missouri senator, John C. Danforth, who was also an ordained Episcopal priest. In late 1989, Danforth, a conservative Republican, and New York’s Daniel Patrick Moynihan, a liberal Democrat, teamed up to introduce a Bill that would become the Patient Self-Determination Act (PSDA) (McCloskey, 1991; Milakovich, 1994; Bennett, 2016). This Bill, which was signed into law on November 5, 1990, requires hospitals, skilled nursing facilities, home health agencies, hospices, and health maintenance organizations that receive Medicare or Medicaid dollars to notify patients they have the right to give advance directives and to make decisions about their future care. For a summary, see 
Figure 13.3
.
Medical Futility
The Karen Quinlan and Nancy Cruzan cases highlight situations where families deemed medical intervention futile but were rebuffed by the medical experts. The term medical futility has taken on quite a different meaning (e.g., Holton & Catic, 2017). Janet Cogliano, a nurse educator, once commented, “Instead of physicians demanding that certain procedures be implemented . . . we now find that patients and/or families are now demanding that ‘everything be done’” (1999, p. 82). Used by the health care professionals themselves, the term now refers to treatment medical experts don’t believe will benefit the patient (Holton & Catic, 2017; White et al., 2016). Although there’s no consensus on its precise meaning (Moskop, 1999; Kon et al., 2016; Holton & Catic, 2017; White et al., 2016), we can say it generally refers to one of the following (Rousseau, 2001):
•    The treatment does not serve a useful purpose.
•    The treatment causes needless pain and suffering.
•    The treatment does not restore the patient to an acceptable quality of life.
There is continuing debate in the health care community itself (Kon et al., 2016; Holton & Catic, 2017; Moskop, 1999; White et al., 2016). Much of it seems to hinge on a single question: should health care professionals be required to continue providing treatment even when they no longer believe it’s beneficial to do so? There seems to be no easy answer and the discussion is ongoing (e.g., Cogliano, 1999; Kon et al., 2016; Holton & Catic, 2017; Moskop, 1999; Reitman, 1996; Rousseau, 2001; White et al., 2016).
You might recall from the earlier discussions in this chapter that there are several key principles that come into play when discussing ethical decision-making. Sometimes they conflict. In the debate on medical futility, the principles that seem most clearly at loggerheads are those of patient autonomy and professional integrity(Pellegrino, 1993). Although not necessarily wishing to return to the heyday of medical paternalism, many doctors nevertheless feel that as professionals they should be able to exercise their judgment even when at odds with the wishes of the patient or family. You probably won’t be surprised to learn, however, that when the opinions of medical experts conflict with the wishes of families, the disagreements have found their way into the legal system. To the dismay of the health care experts, the courts have almost always sided with patients and their families.
A case in point is the story of Helga Wanglie. She was an active, well-educated woman of 85 years when she tripped over a rug and broke her hip (Capron, 1991; Cranford, 1991). This began a saga that included series of admissions to the hospital, rehab centers, and nursing homes. After being successfully treated for her broken hip, Helga was discharged to a nursing home, where she developed respiratory problems serious enough to require mechanical ventilation. Over a span of months, her physicians tried several times to wean her from the respirator without success. It was during this period that she suffered a series of heart attacks. One of these deprived her brain of oxygen long enough to leave her in a PVS. Her physicians recommended stopping life support. Her husband and children refused to go along with it. The medical facility attempted to negotiate with the family, but Helga’s husband of 53 years wouldn’t budge. The Fourth Judicial District Court, Hennepin County, Minnesota, ultimately ruled that Helga’s husband was the best person to act on her behalf. It agreed with his request, refusing to grant the facility permission to discontinue life support. Three days after the judge handed down her decision, and after Helga had existed in a PVS for over a year, she died.
A second landmark case centered on the opposite end of the life-course (Capron, 1994; Spike & Lunstroth, 2016a). It involved a newborn who became known as Baby K, a pseudonym she was given to protect her identity (Flannery, 2010). Born in a Fairfax, Virginia, hospital on October 13, 1992, she was born without major portions of the skull and brain—a condition that affects about 1,000 infants each year in the U.S. Generally, these infants—called anencephalic infants—receive comfort care without the benefit of life support. Because of the severe nature of the disability, it is uncommon for them to live longer than a few days.
Baby K was having difficulty breathing. Despite being told that the baby’s condition was futile, her mother insisted that she be given artificial ventilation. After approximately two months, Baby K was stable enough to be discharged to a nursing home. She needed to return, however, to the hospital as a result of continuing respiratory problems. Upon the second admission, the hospital sought a judicial decision relieving it of the responsibility to provide what its health care professionals regarded as futile treatment. The federal judge ruled against the hospital. It, in turn, appealed the decision. On appeal, the majority of the federal appeals court justices supported the decision of the federal district court. Treatment was required. Two and a half years later, Baby K, whose real name was Stephanie Keene, was transported to the Fairfax Hospital, where she died of cardiac arrest after being rushed from a nearby pediatric nursing center where she had been living (Associated Press, 1995).
Withdrawing Life Support from the Actively Dying
The principle of double effect essentially states that an act is not unethical if a person inadvertently dies when attempting to alleviate suffering (see 
Chapter 12
). This, as well as the other ethical precepts discussed so far in this chapter—autonomy, beneficence, nonmaleficence, and professional integrity—are all conceptual tools that can help frame the discussion about ethical decision-making in end-of-life situations.
The discussion so far has focused on conditions where there is a lack of higher functioning but intact vital functions. Here, we shift the focus to the decision-making process that occurs when a person is actively dying (i.e., when the vital functions are shutting down yet the person might still have the ability to use higher mental functions). In such situations, we may wish to ask, “When is ventilation an intrusion? At what point does resuscitation cause harm? When is it best to let an infection take its natural course? When do providing food and fluids prolong dying instead of sustain functioning?”
There are no easy answers to questions like these—no rote formulas, no clear-cut directions. Knowing what to do when someone is dying is uncertain business. Normal dying—the active dying process—often includes being bed-bound; feeling weak and drowsy; having a hard time breathing; experiencing pain, restlessness, and agitation; having a short attention span; feeling disoriented; not being interested in food or fluids; and having difficulty swallowing (EPEC Project, 1999, 2003; Twycross & Lichter, 1998; ton, 2002; Hui et al., 2014).
For family and friends, seeing a loved one in this situation is unsettling, to say the least. Feelings of fear, confusion, and helplessness are understandable. It’s natural at such times to want to express one’s love, ease discomfort, and do something that feels like helping. In our society, one way to try to do this is by giving food and drink. Loved ones may also mistakenly hope that by providing food and fluids they can help the person regain enough strength to overcome their current medical crisis. At an intuitive level, it may seem compassionate to continue providing such basics as air, fluids, and nutrition to a dying person. The benefits and burdens of providing artificial nutrition and hydration remains unclear (Dalal, Del Fabbro, & Bruera, 2009; Raijmakers et al., 2011; Dev, Dalal, & Bruera, 2012). However, professional caregivers working in palliative care suggest that, rather than providing comfort, such acts can at times actually prolong the dying process and increase suffering (Masuda et al., 2006; Hickman et al., 2004; Konishi, Davis, & Aiba, 2002; van der Riet et al., 2008).
The purpose of providing nutritional support, for example, will change as the disease progresses (Eberhardie, 2002; Danis, Arnold, & Dizon, 2014). Early on, it might make a great deal of sense to provide nutrition in order to cope with the metabolic demands of the illness and treatment, to repair tissue and prevent infection, and to promote a sense of well-being. In the latter stages of the disease this may no longer make sense. Indeed, it’s common for the appetite to naturally drop off when actively dying—perhaps the body’s way of saying it no longer needs food the way it once did. What the body might need at this stage is the freedom to shut down and stop feeling discomfort.
It has been reported that at the end of life many terminally ill people paradoxically experience an increase in comfort that corresponds with a decrease in their nutritional intake (Andrews & Levine, 1989; Miller & Meier, 1998; Musgrave, 1990; Printz, 1988, 1992). Shirley Smith and Maria Andrews (2000) work extensively with the terminally ill. They cite two theories that are used to explain why feelings of relative well-being might occur when eating stops. One suggests that the reduction in nutritional intake naturally stimulates the production of endorphins, an analgesic, or pain reliever, that’s produced naturally in the body. The other submits that, by cutting back on nutritional intake, the process of ketoacidosis (a condition that occurs in diabetes) is stimulated. The production of ketones that occurs in this process is thought to reduce feelings of pain and hunger (Printz, 1988, 1992). Regardless, based on recent research it seems that a sizable number of terminally ill people voluntarily forego taking in food and fluids when they are ready to die (Ganzini et al., 2003), now often referred to as “voluntarily stopping eating and drinking,” or VSED (Lachman, 2015; Pope & West, 2014; Schwarz, 2007).
Terminal dehydration is the loss of salt and water that occurs during the last days of life. Similar to what happens when a dying person loses interest in food, the dehydration may be adaptive—the body’s way of adjusting to multisystem failure and the approach of death (Jackonen, 1997; Hui, Dev, & Bruera, 2015). It was once thought that terminal dehydration was accompanied by a marked reduction in fluid volume and the depletion of important electrolytes, substances necessary for the regulation of various bodily functions (Jackonen, 1997; Musgrave, 1990; Zerwekh, 1983). More recent evidence, however, hasn’t shown electrolyte levels in the terminally ill to be especially problematic (Burge, 1993; Meares, 1994; Smith & Andrews, 2000; Vullo-Navich et al., 1998; Zerwekh, 1997).
Among actively dying persons, terminal dehydration seems to unfold naturally as a result of the gradual reduction in the amount of fluids the person takes in as well the normal secretion of urine, intestinal fluids, and perspiration (Jackonen, 1997; Smith & Andrews, 2000). Similar to what happens when eating slows down, the evidence suggests that terminally ill dehydrated people may experience less discomfort and pain than those who are hydrated (Billings, 1985; Jackonen, 1997; Oliver, 1984; Printz, 1988, 1992; Smith & Andrews, 2000; Zerwekh, 1983). In addition, there’s evidence to suggest that terminal dehydration may help reduce urinary output and incontinence, nausea and vomiting, and cardiopulmonary congestion, breathlessness, and cough (attributed to reduced fluids around the heart and in the lungs) (Jackonen, 1997; Musgrave, 1990; Rousseau, 1991; Smith & Andrews, 2000; Zerwekh, 1983).
Although there are some surprising naturally occurring benefits associated with terminal dehydration, there is also clearly a down side. About 10 percent of terminally ill dehydrated patients may experience severe delirium, now often called terminal agitation—a state characterized by an increase in unpleasant symptoms such as agitation, restlessness, and hallucinations (Smith & Andrews, 2000; Hui et al., 2018). Research suggests that in these cases administering fluids, switching opioids (because of suspected opioid toxicity), and using less sedating types of medication can be successful in reducing the experience of terminal agitation to about 3 percent (Smith & Andrews, 2000).
As you may have already sensed from the discussion, there’s no single kind of death. Indeed, we can say each death tells a different story. There do, however, seem to be some patterns that can distinguish “easy” and “difficult” deaths. Some have called these “two roads to death” (see 
Figure 13.4
) (EPEC Project, 1999, 2003; Ferris et al., 1995). The first, referred to as the “usual road,” is relatively peaceful. It is characterized by a gradually increasing sleepiness coupled with a decrease in consciousness, which ultimately leads to coma and death. The second, called the “difficult road,” is trod by a relatively smaller percentage of the dying, perhaps 10 percent. It’s marked by an agitated delirium. It can include any or all of the following: restlessness, fear, hallucinations, confusion, muscle spasms, and seizures.
The kinds of experiences of patients on the two roads to death are contrasted in 
Figure 13.4
. The two columns merge into a single one at the bottom of the figure. This represents the point at which the two roads merge into a single path. In the end, those on both roads go through being semi-comatose and then comatose before finally succumbing to death.

FIGURE 13.4  Two Roads to Death.
Source: Based on Ferris et al., 1995.
Some terminally ill patients are maintained on ventilators prior to death. If they are unable to continue living without the ventilator, these patients are called ventilator-dependent. Because ventilators can artificially maintain the vital functions of even a terminally ill person for a very long time, at some point the patient (if conscious), family, and the health care team may feel compelled to discuss the appropriateness of discontinuing the use of artificial ventilation (Stawicki, 2017). This is always an extremely momentous event. The literature suggests that withdrawing ventilator support from a ventilator-dependent patient invariably spells death, sometimes within minutes but almost certainly within hours (Ankrom et al., 2001; Campbell, Bizek, & Thill, 1999; EPEC Project, 1999, 2003; Gianakos, 1995; Gilligan & Raffin, 1995; Henig, Faul, & Raffin, 2001; Krieger, 2000; O’Mahony, McHugh, Zallman, & Selwyn, 2003; Tasota & Hoffman, 1996; Way, Black, & Curtis, 2002).
Once the health care team and the family (or person able to make health care decisions for the patient) and the patient (whenever possible) have discussed the current medical situation and the options, it may be desirable to make a decision about discontinuing ventilation. Health care professionals suggest, and the principle of autonomy demands, that the decision be made with the full awareness of all parties that the likely result of taking this step would be death. The methods of carrying it out should also be discussed, with a full disclosure of the undesirable effects as well as the measures that would be used to address patient comfort needs (EPEC Project, 1999, 2003).
When the decision is made to withdraw mechanical ventilation, there are two general methods for doing so (EPEC Project, 1999, 2003; Henig et al., 2001; Gianakos, 1995; Gilligan & Raffin, 1995; Krieger, 2000; Stawicki, 2017). The first is called terminal weaning; the second is immediate extubation. Mechanical ventilation is a process whereby oxygen is artificially pumped to the lungs. The ventilator machine delivers pressurized artificial breaths infused with oxygen. In terminal weaning, the amount of oxygen and the breathing action of the ventilator are reduced while the tube, called an endotracheal tube, remains in place (Alam et al., 2014; EPEC Project, 1999, 2003; Stawicki, 2017). The goal is for the patient to resume spontaneous breathing until death occurs naturally (Campbell, Yarandi, & Mendez, 2015). Some patients are incapable of spontaneous breathing, however. They will die immediately when artificial breathing stops. Intubation occurs when a patient is hooked up to mechanical ventilation. Immediate extubation, the opposite of intubation, involves releasing the mechanism that holds the endotracheal tube in place and removing it from the airway. Secretions that might obstruct the airway are suctioned in an effort to clear the airway. An alternative to extubation is to put a T (valve) on the end of the endotracheal tube but leave it in place. In this case, medications and moisturized air may be infused by way of the T in an effort to provide additional comfort.
As you can imagine, foregoing oxygen and pressurized breath is understandably traumatic for a person who is ventilator-dependent, if conscious. It can also be disturbing for members of the family and health care team (Gilligan & Raffin, 1995). When weaning or extubation is done, minimizing the adverse effects and enhancing patient comfort becomes a medical priority. Opioids are used to control the uncomfortable sense of breathlessness, called dyspnea, naturally (Campbell, Yarandi, & Mendez, 2015). Benzodiazapenes, or other anxiolytics (antianxiety medications) such as lorazepam, are used to control the anxiety naturally (Campbell, Yarandi, & Mendez, 2015). The doses are adjusted until the person is comfortable. If severe symptoms persist in a conscious patient, medically inducing a coma is sometimes the only effective way to ease the patient’s suffering.
Chapter Summary
The world in which we live has changed. Technology has made it possible to artificially sustain life beyond when it would have been possible in the past. As a result, we’ve had to reexamine what we mean by death. This chapter began with an exploration of how to define death, beginning with the dichotomy of clinical death (heart beat and respiration) and so-called brain death (whole brain death, brain stem death, and neocortical brain death). As this examination progressed, the chapter explored some of the cultural context, particularly the need to find new ways to define death because of the ability to transplant vital organs. The chapter looked at the dead donor rule, the Harvard criteria, and the Uniform Death Determination Act.
Next, the issue of withdrawing life support was reviewed, starting with an examination of doing so when a person is existing is a 
Figure 13.2
.
In addition, the chapter explored several key ethical concepts that often come into play when grappling with legal, moral, and ethical issues: autonomy, nonmaleficence, beneficence, justice, and professional integrity. The chapter also looked at the three key standards used when trying to decide about the appropriateness of withholding or withdrawing life support: the subjective standard, the substituted judgment standard, and the best interest standard.
In connection with the Nancy Cruzan case, the chapter also touched on the significance of the Missouri Rule as well as a federal statute that established the rights of people to make decisions about health care in advance of experiencing a medical catastrophe: the PSDA. The chapter also looked at the application of this law and the principle of autonomy to cases of medical futility, defined by the physicians providing care, noting the supremacy of the principle of autonomy when there is a conflict with the medical profession’s principle of professional integrity.
Key Terms
anencephalic infants 
autonomy 
beneficence 
best interest standard 
brain death 
dead donor rule 
dyspnea 
Harvard criteria 
hypoxia 
immediate extubation 
intubation 
ischemia 
justice 
medical futility 
Missouri Rule 
nonmaleficence 
nutrition 
Patient Self-Determination Act (PSDA) 
persistent vegetative state 
professional integrity 
subjective standard 
substituted judgment standard 
terminal dehydration 
terminal sedation 
terminal weaning 
transhumanism 
Uniform Determination of Death Act (UDDA) 
ventilation 
ventilator-dependent 
Suggested Activities
1.   Consider those times when you’ve heard or read about a case of brain death, perhaps on TV or in a newspaper. Reflect on what you know about the different definitions of brain death. How does the way that brain death is defined change how people deal with such situation?
2.   Using your favorite search engine, surf the Internet for sites having to do with organ donation and organ transplantation. See if you can get a sense of any differences that might exist between the need for organs and their availability.
3.   Reflect on your own experiences with death. Consider how many instances in your own family or among your own friends involve persons who have spent long periods in a hospital or nursing home before dying. Briefly journal about your experience in light of the ability of modern technology to artificially sustain life. What are the pros and cons of using high-tech methods of sustaining life?
4.   Develop a table that compares the different definitions of death and brain death. Which definition do you think works best? Are some definitions better in certain circumstances than others? Why?
5.   List the advantages and disadvantages of using the dead donor rule.
6.   If you know anyone who has been declared brain dead, journal about your recollections of the thoughts and feelings you had when you learned they had been given this diagnosis.
7.   Seriously consider the claims of the transhumanists. If you had the option of living two or three times what is currently possible, would you choose it? What would the impact on life in the world be if everyone chose this option? Would you want to live an extended period of time if it meant you could only do so by “residing” on a hard drive?
8.   Develop a set “advance directives” for yourself. Under what circumstances would you choose or not choose to have CPR and artificial ventilation? Under what conditions would you or wouldn’t you want to be given fluids and nutrition artificially? Share with at least two other individuals your preferences about life-support therapies. What did you learn about the other person as a result of doing so? What did you learn about yourself?
9.   After reviewing the ethical principles and decision-making priorities, develop a set of ethical principles that could be used to help guide your ethical decision-making. How would you choose to use these principles in deciding about your own care? About the care of someone close to you? About any other person?
Suggested Reading
•    Bauby, J-D. (1997). The diving bell and the butterfly. New York: Knopf.
This is the profoundly moving memoir of Jean-Dominique Bauby, the former editor-in-chief of the French magazine Elle. At the age of 43, he experienced a rare stroke to the brain stem, which left him in a “locked-in” state. Fully conscious and aware, he was nevertheless left unable to move or communicate except to blink one eye. Developing a system of blinking to selected letters of the alphabet, he was ultimately able to tell his story in this amazing book.
•    Colby, W. H. (2002). Long goodbye: The deaths of Nancy Cruzan. Carlsbad, CA: Hay House.
This “spellbinding” book was written by William H. Colby, the attorney who represented the Cruzan family before the U.S. Supreme Court. In it, Colby recounts the poignant struggle of the family to secure Nancy Cruzan’s right to die. The book personalizes the ethical issues and raises important questions about the meaning of life in the wake of the technological advances in medicine.
Links and Internet Resources
•    Aging with Dignity 
www.agingwithdignity.org

This is home to an organization founded by Jim Towey in 1996 after his experiences at Mother Teresa’s homes for the dying. It promotes and sells a document called The Five Wishes, which is intended to help people to express their wishes should they become seriously ill and unable to speak for themselves. It is an advanced directive designed to let family and physicians know (1) who should be empowered to make health care decisions, (2) the kind of medical treatment wanted, (3) the comfort measures desired, (4) how the person wants to be treated, and (5) what the person would want his or her loved ones to know.
•    Center for Bioethics, University of Minnesota 
www.bioethics.umn.edu

The Center for Bioethics strives to advance and disseminate knowledge concerning ethical issues in health care and the life sciences. It conducts original interdisciplinary research, offers educational programs and courses to foster public discussion and debate, and assists in formulating public policy. The website includes a variety of high-quality resources of interest to learners and teachers, especially their “reading packets.”
•    Department of Medical Humanities, The Brody School of Medicine at East Carolina University
www.ecu.edu/medhum

This impressive website has some first-rate resources. These include a scholarly online newsletter (with archives of old editions), a resource page, and a link to the school’s own bioethics center.
•    World Transhumanist Association 
www.transhumanism.org/index.php/WTA/index

The World Transhumanist Association is an international nonprofit organization devoted to promoting the ethical use of technology to expand human capacities. Founded in 1998 by the philosophers Nick Bostrom and David Pearce, it supports the development of new technologies to enhance human intelligence, repair bodies, and extend life.
Review Guide
  1.   Compare definitions of death, clinical death, brain death (and various categories of brain death). Apply one or more of these definitions as you do one of the suggested activities.
  2.   Describe why definitions of death have become important.
  3.   What is the dead donor rule? In what ways does it or doesn’t it make sense to use it when using a person’s vital organs is considered.
  4.   Be familiar with the definitions of each of the terms printed in bold in this chapter.
  5.   What are the implications of adopting a transhumanist perspective when it comes to field of death and dying?
  6.   What are the kinds of life support discussed in this chapter? What considerations are important when considering providing, withholding, or withdrawing them?
  7.   Identify each of the major ethical principles that come into play in the field of bioethics. Describe the kinds of conflicts that can exist between them. What must be done to resolve conflicts between them?
  8.   Be familiar with the significant legal rulings relevant to withholding or withdrawing life support and with physician-assisted suicide. What ethical principles, if any, seem to hold sway in these decisions?
  9.   Be familiar with the standards that are used when consideration is given to withholding or withdrawing life support.
10.   What are some of the possible effects of dehydration and lack of nutrition at the end of life? What might the impacts have on decision-making about providing artificial hydration/nutrition when a person is nearing death?
11.   What must be considered when deciding to remove artificial ventilation from a person who is ventilator-dependent and in the final phase of life?
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