Do you recoil at the heading, “Choices in Dying”? If so, you may be living in the wrong century. Every twenty-first-century death involves choices, beginning with risks taken or avoided, habits sustained, and specific measures to postpone or hasten death.

It might seem that war deaths, or bystander gun deaths, or accidents of many kinds are not chosen. But always, decisions by the society, the family, or the individual make life or death more likely. For instance, 15,000 fewer motor-vehicle deaths occurred in the United States in recent years than in 1980, when such deaths reached the highest level ever. The reduction since then resulted from thousands of choices, by legislators, police, car designers, and drivers.

People everywhere hope for a good death (Vogel, 2011), one that is:

Many would add that control over circumstances and acceptance of the outcome are also characteristics of a good death, but on this cultures and individuals differ. Some dying individuals willingly cede control to doctors or caregivers, and others fight every sign that death is near. Some cultures praise the dying for non-acceptance.

MODERN MEDICINE In some ways, modern medicine makes a good death more likely. The first item on the list has become the norm: Death usually occurs at the end of a long life.

Younger people still get sick, of course, but surgery, drugs, radiation, and rehabilitation typically mean that, in developed countries, the ill go to the hospital and then return home. If young people die, death is typically quick (before medical intervention could save them) and that makes it a good death for them (if not for their loved ones).

In other ways, however, contemporary medical advances have made a bad death more likely, especially the last items on this list. When a cure is impossible, physical and emotional comfort deteriorate (Kastenbaum, 2012). Instead of acceptance, people submit to surgery and drugs that prolong pain and confusion. Hospitals sometimes exclude visitors from intensive-care units, and patients may become delirious or unconscious, unable to die in peace.

The underlying problem may be medical care itself, which is so focused on lifesaving that dying invites “the dangers of well-intentioned over ‘medicalization’” (Ashby, 2009, p. 94). Dying involves emotions, values, and a community—not just a heart that might stop beating. As my religious adviser told my brother, who wanted to keep it quiet that he was dying, “Cancer is a family disease.” Fortunately, three factors that make a good death more likely have increased: honest conversation, the hospice, and palliative care.

HONEST CONVERSATION In about 1960, researcher Elisabeth Kübler-Ross (1969, 1975) asked the administrator of a large Chicago hospital for permission to speak with dying patients. He told her that no one in the hospital was dying! Eventually, she found a few terminally ill patients who, to everyone’s surprise, wanted very much to talk.

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From ongoing interviews, Kübler-Ross identified emotions experienced by dying people and by their loved ones. She divided these emotions into five sequential stages.

Another set of stages of dying is based on Abraham Maslow’s hierarchy of needs, first introduced in Chapter 1 (Zalenski & Raspa, 2006).

Maslow later suggested a possible sixth stage, self-transcendence (Koltko-Rivera, 2006), which emphasizes the acceptance of death.

Other researchers have not found these sequential stages. Remember the woman dying of a sarcoma, cited earlier? She said that she would never accept death and that Kübler-Ross should have included desperation as a stage. Kübler-Ross herself later said that her stages have been misunderstood, as “our grief is as individual as our lives. . . . Not everyone goes through all of them or goes in a prescribed order” (Kübler-Ross & Kessler, 2014, p. 7).

Nevertheless, both lists remind caregivers that each dying person has strong emotions and needs that may be unlike that same person’s emotions and needs a few days or weeks earlier. Furthermore, those emotions may differ from those of the caregivers, who themselves may have different emotions from each other.

It is vital that everyone—doctors, nurses, family, friends, and the patient—knows that a person is dying; then, appropriate care is more likely (Lundquist et al., 2011). Unfortunately, even if a patient is dying, most doctors never ask about end-of-life care. The result is not longer life but more pain, more procedures, and higher hospital bills. By contrast, patients whose treatment includes discussion of palliative care are happier and live longer (Sher, 2015).

Most dying people want to be with loved ones and to talk honestly with medical and religious professionals. Individual differences continue, of course. Some people do not want the whole truth; some want every possible medical intervention to occur; some do not want many visitors. In many Asian families, telling people they are dying is thought to destroy hope (Corr & Corr, 2013a).

Several practices have become more prevalent since the contrast between a good death and the traditional hospital death has become clear. The hospice and the palliative care specialty are examples.

HOSPICE In 1950s London, Cecily Saunders opened the first modern hospice, where terminally ill people could spend their last days in comfort (Saunders, 1978). Thousands of other hospices have opened in many nations, and hundreds of thousands of hospice caregivers now bring medication and care to dying people where they live. In the United States, more than half of all hospice deaths occur at home (NHPCO, 2014).

Hospice professionals relieve discomfort, avoiding measures that merely delay death; their aim is to make dying easier. Comfort can include measures that some hospitals forbid: acupuncture, special foods, flexible schedules, visitors when the patient wants them (which could be 2 A.M.), massage, aromatic oils, and so on (Doka, 2013).

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There are two principles for hospice care:

In 2013 in the United States, 43 percent of deaths occurred with hospice care, one-third of them within a week after hospice care began (National Center for Health Statistics, 2011). Hospice caregivers wish they had more time to assess and meet the particular medical and emotional needs of the dying person and their loved ones. Dying and mourning are lengthy processes. It is not true that hospice care necessarily means a quick death, although doctors are reluctant to recommend hospice unless they are certain that death is imminent.

Unfortunately, hospice does not reach many dying people (see Table EP.2), even in wealthy nations, much less in developing ones (Kiernan, 2010).

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There are ethnic differences as well. In the United States, only 6 percent of hospice patients are Latino (NHPCO, 2014). Compared to European Americans, African Americans are more often admitted to hospice from a hospital than from a home and are likely to die relatively quickly (one week, on average), whereas the average hospice death occurs two weeks after admission (K. S. Johnson et al., 2011). The reason is thought to be cultural, not economic, since Medicare now pays most hospice expenses.

Nationally, about 15 percent of hospice patients are discharged alive. Sometimes their health has improved. However, the hospices with the highest “live discharge” rates tend to be recently founded, private, profit-making institutions: Their hospice admissions and discharges may occur for financial, not medical, reasons (Teno et al., 2014). (Originally, hospices were all nonprofit.)

Home hospice care requires family or friends trained by hospice workers to provide care. Although this has led to an increase of “good deaths” at home, not everyone has available caregivers. Most deaths still occur in hospitals, and many others occur in nursing homes (see Figure EP.4).

PALLIATIVE CARE In 2006, the American Medical Association approved a new specialty, palliative care, which focuses on relieving pain and suffering, in hospitals, homes, or hospice. Palliative doctors are trained to discuss options with patients and their families. Some interventions (especially surgery) may be refused if people understand the risks and benefits (Mynatt & Mowery, 2013). Palliative doctors also prescribe powerful drugs and procedures that make patients comfortable.

Morphine and other opiates have a double effect: They relieve pain (a positive effect), but they also slow down respiration (a negative effect). Painkillers that reduce both pain and breathing are allowed by law, ethics, and medical practice.

In England, for instance, although it is illegal to cause death, even of a terminally ill patient who repeatedly asks to die, it is legal to prescribe drugs that have a double effect. One-third of all English deaths include such drugs. This itself raises the issue of whether some narcotics are used to hasten death more than to relieve pain (Billings, 2011).

Heavy sedation is another method sometimes used to alleviate pain. Concerns have been raised that this may merely delay death rather than prolong meaningful life, since the patient becomes unconscious, unable to think or feel (Raus et al., 2011).

As you see, the success of medicine has created new dilemmas. Death is no longer the natural outcome of age and disease; when and how death occurs involves human choices.

DECIDING WHEN DEATH OCCURS No longer does death necessarily occur when a vital organ stops. Breathing continues with respirators; stopped hearts are restarted; stomach tubes provide calories; drugs fight pneumonia.

Almost every life-threatening condition results in treatments started, stopped, or avoided, with death postponed, prevented, or welcomed. This has fostered impassioned arguments about ethics, both between nations (evidenced by radically different laws) and within them.

Religious advisers, doctors, and lawyers disagree with colleagues within their respective professions. Family members disagree with one another. Members of every group disagree with members of their own group and the other groups (Ball, 2012; Engelhardt, 2012; Nelson-Becker et al., 2015).

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One physician, a specialist in palliative care, advised his colleagues:

The highway of aggressive medical treatment runs fast, is heavily travelled, but can lack landmarks and the signage necessary to know when it is time to make for the exit ramp . . . These signs are there and it is your responsibility to communicate them to patients and families.

[Fins, 2006, p. 73]

Good advice, hard to follow.

EVIDENCE OF DEATH Historically, death was determined by listening to a person’s chest: No heartbeat meant death. To make sure, a feather was put to the person’s nose to indicate respiration—a person who had no heartbeat and did not exhale was pronounced dead. Very rarely, but widely publicized when it happened, death was declared but the person was still alive.

Modern medicine has changed that: Hearts and lungs need not function on their own. Many life-support measures and medical interventions circumvent the diseases and organ failures that once caused death. Checking breathing with feathers is a curiosity that, thankfully, is never used today.

But how do we know when death has happened? In the late 1970s, a group of Harvard physicians concluded that death occurred when brain waves ceased, a definition now used worldwide (Wijdicks et al., 2010). However, many doctors believe that death can occur even if primitive brain waves continue (Kellehear, 2008; Truog, 2007) (see Table EP.3).

It is critical to know when people are in a permanent vegetative state (and thus will never regain the ability to think) and when they are merely in a coma but might recover. One crucial factor is whether the person could ever again breathe without a respirator, but that is hard to guarantee if “ever again” includes 10 or 20 years hence.

In 2008, the American Academy of Neurology gathered experts to conduct a meta-analysis of recent studies regarding end-of-life brain functioning. They found 38 empirical articles. Two experts independently read each one, noting measures used to determine death and how much time elapsed between lack of sentient brain function and pronouncement of death. They found no consensus. Only two indicators were confirmed: Dead people no longer breathe spontaneously, and their eyes no longer respond to stimuli.

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As this article points out, everyone needs to know when a person is brain-dead, but there is not yet a definitive, instant test because there are “severe limitations in the current evidence base” (Wijdicks et al., 2010, p. 1914). Thus, family members may spend months hoping for life long after medical experts believe no recovery is possible.

Consequently, a person who wanted to donate organs after death is unable to do so because so much time elapsed between death and donation that the organs are no longer usable. A survey of many nations found that there is no international agreement as to brain death, nor does that seem possible in the near future (Wahlster et al., 2015).

EUTHANASIA Euthanasia, sometimes called mercy killing, is common for pets but rare for people. Many people see a major distinction between active and passive euthanasia, although the final result is the same. In passive euthanasia, a person near death is allowed to die. They may have a DNR (do not resuscitate) order, instructing medical staff not to restore breathing or restart the heart if breathing or pulsating stops.

Passive euthanasia is legal everywhere if the dying person chooses it, but many emergency personnel start artificial respiration and stimulate hearts without asking whether a patient has a DNR. That makes passive euthanasia impossible.

Active euthanasia is deliberately doing something to cause death, such as turning off a respirator or giving a lethal drug. Some physicians condone active euthanasia when three conditions occur: (1) suffering cannot be relieved, (2) incurable illness, and (3) a patient who wants to die. Active euthanasia is legal in the Netherlands, Belgium, Luxembourg, and Switzerland, and illegal (but rarely prosecuted) elsewhere.

Attitudes may be changing. For example, over the past decade in Austria, doctors in training have increasingly valued patients’ autonomy, which has led to more acceptance of active euthanasia (Stronegger et al., 2013) (see Figure EP.5). In every nation surveyed, some physicians would never perform active euthanasia and others have done so. Opinions from the public vary as well, although generally nations in eastern Europe are less accepting than those in western Europe (J. Cohen et al., 2013).

THE DOCTOR’S ROLE Between passive and active euthanasia is another option: A doctor may provide the means for patients to end their own lives, typically by prescribing lethal medication. This is called physician-assisted suicide.

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Physician-assisted suicide poses many controversial ethical issues. Even the name is in dispute: The laws in Oregon, Washington, Vermont, and California assert that such deaths should be called “death with dignity,” not suicide. No matter what the name, acceptance varies markedly by culture. Reasons have less to do with people’s personal experience than with religion, education, and local values (Verbakel & Jaspers, 2010).

For example, some cultures believe that suicide may be noble, as when Buddhist monks publicly burned themselves to death to advocate Tibetan independence from China, or when people choose to die for the honor of their nation or themselves. However, in the United States, physicians of Asian heritage are less likely to condone physician-assisted suicide than are non-Asian physicians (Wolenberg et al., 2013; Curlin et al., 2008).

This reluctance of Asian doctors to speed up death helps explain a practice in Thailand: When it becomes apparent that a hospitalized patient will soon die, an ambulance takes that person back home, where death occurs naturally. Then the person and the family can benefit from a better understanding of life, suffering, and death (Stonington, 2012).

PAIN: PHYSICAL AND PSYCHOLOGICAL The Netherlands has permitted active euthanasia and physician-assisted suicide since 1980 and extended the law in 2002. The patient must be aware, the request must be clearly expressed, and the goal must be to halt “unbearable suffering” (Buiting et al., 2009). Consequently, Dutch physicians first try to make the suffering bearable via better medication.

However, a qualitative analysis found that “fatigue, pain, decline, negative feelings, loss of self, fear of future suffering, dependency, loss of autonomy, being worn out, being a burden, loneliness, loss of all that makes life worth living, hopelessness, pointlessness and being tired of living were constituent elements of unbearable suffering” (Dees et al., 2011, p. 727). Obviously, medication cannot alleviate all that.

Oregon voters approved physician-assisted “death with dignity” (but not other forms of active euthanasia) in 1994 and again in 1997. The first such legal deaths occurred in 1998. The law requires the following:

The law also requires record-keeping and annual reporting. About one-third of the requests are granted, and about one-third of those who are approved die naturally, never using the drugs. Between 1998 and 2012, about 200,000 people in Oregon died. Only 738 of them died after taking the prescribed lethal drugs.

As Table EP.4 shows, Oregon residents requested the drugs primarily for psychological, not biological, reasons—they were more concerned about their autonomy than their pain. In 2012, some 115 Oregonians obtained lethal prescriptions, and 77 legally used drugs to die. Most of the rest died naturally, but some were alive in January 2013 and expected to use the drug in the future (about 10 percent use their prescriptions the year after obtaining them) (Oregon Public Health Division, 2013).

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ADVANCE DIRECTIVES Advance directives can describe everything regarding end-of-life care. This may include where the person wants to die and what should happen to their body after death. Typically the focus is on medical measures.

Among the explicit statements in medical directives are: whether artificial feeding, breathing, or heart stimulation should be used; whether antibiotics that might merely prolong life or pain medication that causes coma or hallucinations are desired; whether religious music or clergy are welcome; and so on.

The legality of such directives varies by jurisdiction. Sometimes a lawyer is needed to ensure that documents are legal; sometimes a written request, signed and witnessed, is adequate.

Many people want personal choice about death; thus they approve of advance directives in theory but are uncertain about specifics. For example, few know that restarting the heart may extend life for decades in a healthy young adult but is likely to cause major brain damage, or merely prolong dying, in an elderly person whose health is failing.

Added to the complications are personal factors, such as additional morbidities and exactly what other factors are present. For example, the effect of cardiopulmonary resuscitation depends partly on how long the heart has stopped (Bass, 2011). Data on overall averages are contradictory (Elliot et al., 2011). Furthermore, the data given to family about the consequences may include only the medical consequences for survivors, not the odds of death.

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Even talking about choices is controversial. Originally, the U.S. health care bill passed in 2010 allowed doctors to be paid for describing treatment options (e.g., Kettl, 2010). Opponents called those “death panels,” an accusation that almost torpedoed the entire package. As a result, that measure was scrapped: Physicians cannot bill for time spent explaining palliative care, options for treatment, or dying.

WILLS AND PROXIES Advance directives often include a living will and/or a health care proxy. Hospitals and hospices strongly recommend both of these. Nonetheless, most people resist: A study of cancer patients in a leading hospital found that only 16 percent had living wills and only 48 percent had designated a proxy (Halpern et al., 2011).

A living will indicates what sort of medical intervention a person wants or does not want in the event that they become unable to express their preferences. (If the person is conscious, hospital personnel ask about each specific procedure, often requiring written consent before surgery. Patients who are conscious and lucid can choose to override any instructions they wrote earlier in their living will.)

The reason a person might want to override their own earlier wishes is that living wills include phrases such as “incurable,” “reasonable chance of recovery,” and “extraordinary measures,” and it is difficult to know what those phrases mean until a specific issue arises. Even then, medical judgments vary. Doctors and family members disagree about what is “extraordinary” or “reasonable.”

Some people designate a health care proxy—another person to make medical decisions for them if they become unable to do so. That seems logical, but unfortunately neither a living will nor a health care proxy guarantees that medical care will be exactly what a person would choose.

For one thing, proxies find it difficult to allow a loved one to die. A larger problem is that few people—experts included—understand the risks, benefits, and alternatives to every medical procedure. It is hard to decide for oneself, much less for a patient or family member, exactly when the risks outweigh the benefits.

Medical professionals advocate advance directives, but they also acknowledge the problems with them. As one couple wrote:

Working within the reality of mortality, coming to death is then an inevitable part of life, an event to be lived rather than a problem to be solved. Ideally, we would live the end of our life from the same values that have given meaning to the story of our life up to that time. But in a medical crisis, there is little time, language, or ritual to guide patients and their families in conceptualizing or expressing their values and goals.

[Farber & Farber, 2014, p. 109]

THE SCHIAVO CASE A famous example of the need for a health care proxy occurred with Theresa (Terri) Schiavo, who was 26 years old when her heart suddenly stopped. Emergency personnel restarted her heart, but she fell into a deep coma. Like almost everyone her age, Terri had no advance directives. A court designated Michael, her husband of six years, as her proxy.

Michael attempted many measures to bring back his wife, but after 11 years he accepted her doctors’ repeated diagnosis: Terri was in a persistent vegetative state. He petitioned to have her feeding tube removed. The court agreed, noting the testimony of witnesses who said that Terri had told them that she never wanted to be on life support. Terri’s parents appealed the decision but lost. They pleaded with the public.

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The Florida legislature responded, passing a law that required that the tube be reinserted. After three more years of legal wrangling, the U.S. Supreme Court ruled that the lower courts were correct and the legislature overstepped its authority. At this point, every North American newspaper and TV station was following the case. Congress passed a law requiring that artificial feeding be continued, but that law, too, was overturned as unconstitutional.

The stomach tube was removed, and Terri died on March 31, 2005—although some maintained that she had really died 15 years earlier. An autopsy revealed that her brain had shrunk markedly; she had not been able to think for at least a decade.

Partly because of the conflicts among family members and between appointed judges and elected politicians, Terri’s case caught media attention, inspiring vigils and protests. Lost in that blitz are the thousands of other mothers and fathers, husbands and wives, sons and daughters, judges and legislators, doctors and nurses who struggle less publicly with similar issues. As of 2015, the underlying problems have not been solved.

Advance directives may provide caregivers some peace. But, as the Schiavo case makes clear, discussion with every family member is needed long before a crisis occurs (Rogne & McCune, 2014).