E.2 Choices in Dying

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.

A Good Death

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

• At the end of a long life
• Peaceful
• Quick
• In familiar surroundings
• With family and friends present Without pain, confusion, or discomfort

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

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, 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), which, although it does not meet the criteria set out above, may actually be a painless death for them, if not for their loved ones.

In other ways, however, contemporary medical advances have made a bad death more likely. When a cure is impossible, physical and emotional comfort may deteriorate (Kastenbaum, 2012). Instead of acceptance, people fight death with surgery and drugs that prolong pain and confusion. Hospitals may exclude visitors at the most critical point, 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 life-saving 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. Fortunately, three factors that make a good death more likely have increased: honest conversation, the hospice, and palliative care.

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.

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

1. Denial (“I am not really dying.”)
2. Anger (“I blame my doctors, or my family, or God for my death.”)
3. Bargaining (“I will be good from now on if I can live.”)
4. Depression (“I don’t care about anything; nothing matters anymore.”)
5. Acceptance (“I accept my death as part of life.”)

Another set of stages of dying is based on Abraham Maslow’s hierarchy of needs; as applied to the dying, Maslow’s hierarchy can be characterized as follows (Zalenski & Raspa, 2006):

1. Physiological needs (freedom from pain)
2. Safety (no abandonment)
3. Love and acceptance (from close family and friends)
4. Respect (from caregivers)
5. Self-actualization (appreciating one’s unique past and present)

[Lifespan Link: Maslow’s hierarchy of needs is discussed in Chapter 2.]

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, 2005, 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 each have their own emotions.

It is important for everyone—doctors, nurses, family, friends, and the patient—to know 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 what end-of-life care the patient wants, and the result is not longer life but more pain, more procedures, and higher hospital bills in the final week of life. One study found that patients who had spoken with their doctors about terminal care had a final bill 36 percent lower than those who had not (Zhang et al., 2009).

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, 2013).

Better Ways to Die

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

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 bring medication and care to dying people where they live. In the United States, half of all hospice deaths occur at home (National Center for Health Statistics, 2011).

Hospice professionals relieve discomfort, avoiding measures that merely delay death; their aim is to make dying easier. There are two principles for hospice care:

• Each patient’s autonomy and decisions are respected. For example, pain medication is readily available, not on a schedule or minimal dosage. Most hospice patients use less medication than a doctor might prescribe, but they decide.
• Family members and friends are counseled before the death, taught to provide care, and guided in mourning. Their needs are as important as those of the patient. Death is thought to happen to a family, not just to an individual.

Unfortunately, hospice does not reach many dying people (see Table EP.2), even in wealthy nations, much less in developing ones (Kiernan, 2010). Hospice care is more common in England than in mainland Europe, more common in the western part of the United States than the southeastern part, and rare in poor nations. Everywhere, those of higher SES are more likely to receive hospice care. In the U.S. there are ethnic differences as well. For example, when African Americans enter hospice, they are more often admitted from a hospital than a home and are likely to die relatively quickly (one week, on average) (K. S. Johnson et al., 2011).

Currently in the United States, 60 percent of people die without hospice; of the 40 percent in hospice, one-third die within a week (National Center for Health Statistics, 2011). That is too soon for the personal medical and emotional needs of a dying person and their loved ones to be assessed and met.

Entering hospice means that comfort takes precedence over cure, but sometimes that itself extends life. In fact, 16 percent of U.S. hospice patients are discharged alive. 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).

Hospice care is expensive if it occurs in a separate institution where many skilled workers—doctors, nurses, psychologists, social workers, clergy, music therapists, and so on—provide individualized care day and night. Until recently, most insurance companies (including Medicare) did not cover hospice care unless no curative measures were included. That either/or restriction has been lifted, but many new hospice programs are for-profit, which may undercut the quality of care.

Home hospice care is less expensive, but it requires family or friends trained by hospice workers to provide care. Although this has led to an increase of “good deaths” at home, most deaths still occur in hospitals, and many others occur in nursing homes (see Figure EP.4).

In 2006 the American Medical Association approved a new specialty, palliative care, which focuses on relieving pain and suffering. Palliative-care doctors are trained to discuss options with patients and their families. Some interventions may be refused if people understand the risks and benefits (Mynatt & Mowery, 2013). Palliative-care 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). A painkiller that reduces both pain and breathing is 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 sometimes merely delays death rather than prolonging meaningful life, since the patient becomes unconscious, unable to think or feel (Raus et al., 2011).

Ethical Issues

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.

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. At what point, if ever, should intervention stop to allow death?

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, and members of each group disagree with members of the other groups (Ball, 2012; Engelhardt, 2012; Prado, 2008).

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

Good advice, hard to follow.

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 pain.

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.

Euthanasia, common for pets but rare for people, is very controversial. Many people see a major distinction between active and passive euthanasia (sometimes called mercy killing), 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 might make 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 that 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., 2011) (see Figure EP.5).

In every nation surveyed, some physicians would never perform active euthanasia, but 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 (Cohen et al., 2013).

Between passive and active euthanasia is another option: A doctor may provide the means for patients to end their own lives in what is sometimes called physician-assisted suicide, typically by prescribing lethal medication. The state of Oregon has legalized this practice, explicitly asserting that such deaths should be called “death with dignity,” not suicide. No matter what the name, acceptance varies markedly by culture (Prado, 2008). 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: Buddhist monks publicly burned themselves to death to advocate Tibetan independence from China; everywhere, some people choose to die for the honor of their nation or themselves. However, in the United States physicians of Asian religions are less likely to condone physician-assisted suicide than are non-Asian physicians (Wohlenberg et al., 2013; Curlin et al., 2008). This reluctance of Asian doctors to speed death helps explain a practice in Thailand: When it becomes apparent that a hospitalized patient will die soon, 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).

The Netherlands has permitted active euthanasia and physician-assisted suicide since 1980, and they extended the law in 2002. The patient must be clear and aware in making the request, and the goal is 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 those states of mind.

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 dying person must be an Oregon resident, over age 17.
• The dying person must request the lethal drugs twice orally and once in writing.
• Fifteen days must elapse between the first request and the prescription.
• Two physicians must confirm that the person is terminally ill, has less than six months to live, and is competent (i.e., not mentally impaired or depressed).

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, 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 Department of Human Services, 2013).

Advance directives can describe everything regarding end-of-life care; this includes where people want to die and what should happen to their body after death, but the main focus is on medical measures. Should artificial feeding, breathing, or heart stimulation be used? Are antibiotics that might merely prolong life or pain medication that causes coma or hallucinations desired? Is religious music or clergy welcome? The legality of such directives varies by jurisdiction: Sometimes a lawyer is needed to ensure documents are legal; sometimes a written request, signed and witnessed, is adequate.

Many people want personal choice about death, and thus approve advance directives in theory, but are uncertain about specifics. For example, few know that restarting the heart may extend life for decades in a young, healthy adult but may result in dementia, or merely prolong dying, in an elderly person whose health is failing.

Added to the complications are personal specifics, such as other morbidities, timing, mobility. For example, sometimes cardio resuscitation is harmful, partly based on how long the heart has stopped (Buss, 2013). Data on overall averages is contradictory (Elliot et al., 2011). Furthermore, data on outcome is usually for survivors, not for those who die after various interventions, so advance directives may be based on faulty assumptions.

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.

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 he or she becomes unable to express his or her 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 that people 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 also 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 often 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. That makes it difficult to decide for oneself, much less for a family member, exactly when the risks outweigh the benefits.

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

A heartbreaking 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 then pleaded with the public.

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. By 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.

Advance directives may help make death “an event to be lived…[with] the same values that have given meaning to the story of our life” (Farber & Farber, 2014, p.109) and 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).