How does the health-care system deal with death? Let’s first take a critical look at standard hospital terminal care and then explore the new health-care options designed to tame twenty-first-century death.

Most of us will die in a hospital (Prevost & Wallace, 2009). But social scientists have known for a half-century that the traditional hospital approach to dying has flaws. Consider the findings of this groundbreaking 1960s study in which sociologists entered hospitals and observed how the medical staff organized “the work” of terminal care (Glaser & Strauss, 1968).

The researchers found that, when a person was admitted to the hospital, nurses and doctors set up predictions about what pattern that individual’s dying was likely to follow. This implicit dying trajectory, then governed how the staff acted.

The problem was that dying trajectories could not be completely predicted. When someone mistakenly categorized as “having months to live” was moved to a unit in the hospital where she was not monitored, this mislabeling tended, not infrequently, to hasten death. An interesting situation happened when someone was expected to die soon and then lived on. Doctors might call loved ones to the bedside to say goodbye, only to find that the person began to improve. This “final goodbye” scenario could play out time and time again. The paradox was that if dying was “off schedule,” living might be transformed into a negative event!

One patient who was expected to die (quickly) had no money, but started to linger indefinitely (being paid for as a charity patient in the hospital). The money problem, however, created much concern among both family members and the hospital administrators. . . . The doctor continually had to reassure both parties that the patient (who lived for six weeks more) would soon die; that is, to try to change their expectations back to “certain to die on time.”

(Glaser & Straus, 1968, pp. 11–12)

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The bottom line is that deaths don’t occur according to a programmed timetable. Hospitals are structured according to the assumption that they do. This incompatibility makes for a messy dance of terminal care.

Unfortunately, since this research was conducted, the situation has not changed. According to one review of hospital records spanning 1996 to 2010, the odds of health-care workers accurately predicting the date of a patient’s dying were only fifty-fifty (Phillips, Halcomb, and Davidson, 2011). So families still suffer the trauma of being caught “off guard” when faced with that event (Wells-di Gregorio, 2009). When dying proceeds according to schedule (or as expected), health-care personnel classify the death as “good.” As one resident in a study reported: “I felt good that he died in a comfortable way. . . . I guess I just knew it would happen in 24 hours so it doesn’t come as a shock” (quoted in Good and others, 2004, p. 944). When trajectories are mislabeled, the death is defined as “bad”: “She came in for a bone marrow transplant to cure her [cancer] . . . and got pulmonary toxicity and died” (p. 945). Good deaths happen when there is smooth communication between the medical team and patients’ families. Bad deaths are rife with disagreements, anger, and hurt (see Wells-di Gregorio, 2009). In fact, because of the potential for miscommunication, traditional hospital dying may be more turbulent in the twenty-first century than before.

One reason is that, today, patients do not spend weeks or months in a hospital. They often enter this setting when they are within days of death. Therefore, the health-care professionals on the death scene may not be emotionally involved with the person (Good and others, 2004). They may have little understanding of patients’ and families’ needs.

Disagreements between members of the health-care team add to this problem. Physicians make the final decisions about treatments; but nurses, the frontline caregivers, know the patient’s and family’s wishes best. Nurses may want to advocate for dying patients but be afraid of being disciplined if they speak up (Thacker, 2008; Yu & Chan, 2010). Compounding these professional conflicts are issues related to living in our multicultural society (Wells-di Gregorio, 2009). Suppose the attending doctor on the floor where your relative is dying is a recent immigrant from Beijing or Bangladesh, or your parents only speak Spanish or Swahili. How can everyone really communicate at this intensely emotional time?

What underlies these conflicts is our quantum leap death-defying technologies. Physicians can offer nutrition to people through a tube into the stomach, bypassing the body’s normal signal to stop eating in preparation for death. They put patients on ventilators, machines that breathe for the person, after the lungs have given out. Caring doctors may agonize about using these heroic measures (Liben, Papadatou, & Wolfe, 2008). But their mission to cure can make it difficult to resist the lure of the machines:

We were realizing that we were going to hurt him [a 40-year-old lung cancer patient who had had multiple surgeries and several strokes] if we . . . kept trying to keep a body alive that was not wanting to be alive. And everyone figured “what the heck, give it a shot.”

(quoted in Good and others, 2004, p. 945)

Today, medical workers are faced with agonizing ethical choices: How long do you vigorously wage war against death, and when should you say, “enough is enough”? Shifting from the cure-at-all-costs mode can be difficult. To paraphrase one expert, it’s like “deciding to play baseball while the football game is in full swing” (Chapple, 1999). Understanding that we can never take the mess out of dying, just as we can never take the mess out of living, let’s now look at how the traditional health-care system is taking action to tame contemporary death.

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Educating Health-Care Providers

In recent decades, end-of-life care instruction, has become a frequent component of medical and nursing training. Courses cover everything from the best drugs to control pain without “knocking the person out” to the ethics of withdrawing treatment. Instruction may involve hands-on experiences such as having medical students visit terminally ill patients in hospices (Gadoud and others, 2013) or workshops in which student nurses personally imagine what it is like to die (Liu and others, 2011).

We need to do more (Smith & Hough, 2011). In one hospital survey, although nurses reported dealing with death on a daily basis, fewer than half said they had formal training in end-of-life care within the previous three years (Thacker, 2008). Doctors want more guidance in how to discuss negative prognoses since they are naturally reluctant to convey the message, “There isn’t much we can do” (Smith & Hough, 2011).

The result of this anxiety is that we sometimes get physicians who (perhaps out of their own fear) decide to take Kübler-Ross’s concept of “honesty” literally, saying, “Your illness is terminal,” and then bolting from the room. Or health-care providers persist in carrying out painful, futile treatments for far too long. Luckily, however, we have a hospital structure designed to ease these difficult discussions, a mainstream medical alternative devoted to promoting the best possible death.

Changing Hospitals: Palliative-Care Units

A palliative-care service, is a special unit or service that is devoted to end-of-life care within a traditional hospital setting. Here, certain groups of inpatients—for instance, old-old people with multiple chronic illnesses and people with advanced cancer—have their care managed by a team of providers trained in when to shift from “football to baseball mode” (recall the analogy mentioned earlier). Patients enrolled in the palliative-care service are not denied cure-oriented interventions (Bonebrake and others, 2010). However, as their illness becomes terminal, the vigor of life-prolonging treatments shifts to providing the best possible “comfort care.”

Families give palliative care high marks, compared to traditional end-of-life care (García-Pérez and others, 2009). These services are “cost-effective” (Meier & Beresford, 2009). Moreover—unlike what some readers may fear—having this unit at a hospital doesn’t make death more likely when patients enter that institution’s care (Cassel and others, 2010). So, by the first decade of the twenty-first century, many major medical centers in the developed world provided palliative-care services (Dobbins, 2007).

The global view, however, is bleak. Even in affluent nations—such as Canada—experts estimate that only 1 in 4 terminally ill people has access to hospital-based palliative care (Shariff, 2011). Of the roughly one million human beings who die each week worldwide, a large fraction spend their final days in agony, without even over-the-counter medicines to control their pain (Clark, 2007).

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State-of-the art, hospital-based palliative-care services are a welcome trend. But it still seems unfair to ask health-care professionals to embrace the enemy. Physicians in particular may shy away from dying patients because facing them means they failed in their mission to cure. Therefore, the most humane way to promote dignified dying might be to remove that act from the doctors with their cure-oriented focus and death-defying machines.

This is the philosophy underlying the hospice movement, which gained momentum in the 1970s, along with the natural childbirth movement. Like birth, hospice activists argued, death is a natural process. We need to let this process occur in the most pain-free, natural way (Corr, 2007).

Hospice workers are skilled in techniques to minimize patients’ physical discomfort. They are trained in providing a humanistic, supportive psychological environment, one that assures patients and family members that they will not be abandoned in the face of approaching death (Monroe and others, 2008).

In many developed nations, hospice care is mainly delivered in a freestanding facility called a hospice. The main focus of the United States hospice movement is on providing backup care that allows people to die with dignity at home. As occurred with my husband, and as you can read in the Experiencing the Lifespan box below, multidisciplinary hospice teams go into the person’s home, offering care on a part-time, scheduled, or daily basis. They provide 24-hour help in a crisis, giving family caregivers the support they need to allow their relative to spend his final days at home. Their commitment does not end after the person dies: An important component of hospice care is bereavement counseling.

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Entering a U.S. hospice program is simple. It requires a physician to certify that the person is within six months of death. Home hospice care is less expensive than traditional end-of-life care (Bentur and others, 2014). Because Medicare fully covers this service, U.S. hospice is available to people on every rung of the economic ladder (Sengupta & others, 2014).

As you can see in Figure 15.2, in recent decades, the U.S. hospice movement has mushroomed. By 2009, roughly 2 in 5 U.S. deaths occurred in hospice care. What is the hospice experience really like?

Charting the U.S. Hospice Experience

Imagine that your doctor has just made the pronouncement: “I’m referring your spouse or parent to hospice. There is nothing more we can do.” You must simultaneously deal with the shock of grieving and embark on a difficult, uncharted path. Passionate to offer your loved one this final demonstration of love, you are incredibly anxious about what lies ahead. What can you expect about the person’s pathway to death?

The answer partly depends on the illness. If the disease is cancer, expect a more precipitous decline. With congestive heart failure or pulmonary disease, the transition to serious ADL problems is apt to be slower during the next days and weeks. Some people enter hospice bedridden and spend their final days comatose. Others, like my husband, are fully alert and able to perform basic ADL activities until their last moments of life (Harris and others, 2013). This variation partly explains why, although the average hospice stay is roughly two weeks, 1 in 10 U.S. patients spends close to a year in hospice care (Sengupta and others, 2014).

This uncertainty is scary, but your main fear is seeing your loved one suffer. The box full of medications you just got from the hospice team is frightening. Without any nursing training, will you be able to control your family member’s pain?

Actually, issues relating to pain control rank among hospice caregivers primary concerns: People worry about leaving the person in agony, or they may fear that that final dose of morphine hastened death (Oliver and others, 2013; Kelley and others, 2013). As one person reported: “She (dying loved one) has chronic pain. The morphine was in an unusual bottle and I was afraid to give her too much or too little and the dropper wasn’t working. It was very scary” (quoted in Kelley and others, 2013, p. 679).

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These worries are not unrealistic. In one survey, 2 out of 3 U.S. hospice providers cited medication management as their most problematic issue. One in three reported frequently encountering problems in this area as they struggled to help families provide care (Joyce & Lau, 2013).

Charting the Barriers to Hospice

This discussion brings up the hurdles to hospice. As I mentioned earlier, hope is the main emotion people feel when facing a terminal disease. Entering hospice means confronting the reality, “I am going to die.” Family members are naturally reluctant to bring up hospice, because they, too, may want to urge undergoing that one last curative intervention that allows a loved one to survive.

The same reluctance applies to the hospice gatekeeper—the physician. As I alluded to earlier, doctors find it difficult to “give up” on a patient they may have treated for months or years (Marmo, 2014). So, it makes sense that physicians often refrain from mentioning hospice until patients’ last weeks of life, even when the ill person might have benefitted from this service for months (Snyder and others, 2013).

Another impediment relates to everyone’s misconceptions about hospice care. People are not aware that patients can still receive curative interventions after entering hospice, or that it’s possible to survive for months in hospice with a fairly good quality of life (see the Experiencing the Lifespan box on page 455). Particularly, minority groups may not understand that in the United States, Medicare pays for hospice (Frey and others, 2013) or realize that hospice care occurs at home (Enguidanos, Yonashiro-Cho, & Cote, 2013). African Americans may cling to aggressive cure-oriented treatments, out of a lifelong fear that traditional medicine has done them wrong (Johnson and others, 2013). Residents of rural areas may not have access to hospice teams (Lynch, 2013).

Even when patients are aware that their illness is fatal, they may be less than thrilled to have loved ones care for them during their final weeks of life. Imagine being totally taken care of by your family when you have a terminal disease. You don’t have any privacy. Loved ones must bathe you and dress you; they must care for your every need. You may be embarrassed about being seen naked and incontinent; you may want time alone to vent your anguish and pain. In a hospital (or inpatient hospice), care is impersonal. At home, there is the humiliation of having to depend on the people you love most for each intimate bodily act.

Most importantly, care by strangers equals care that is free from guilt. As I described earlier in this chapter, when people are approaching death, they often want to emotionally protect their loved ones—to shield them from pain. Witnessing the toll that your disease is taking on your family may multiply the pain of dying itself.

This explains, why, in a rare interview study conducted with people receiving inpatient hospice care in Australia, patients’ main worries centered around loved ones. Yes, people said, moving to hospice signaled a depressing step closer to death. But they were relieved to no longer be burdening their families: “My husband is very quiet. . . . If he feels he cannot cope, I would rather be in here if that gives him a chance to come here, spend some time and then go home and get his head together,” reported one woman. A man appreciated the privacy involved in getting care from strangers. “It’s going with a little bit of dignity . . . and not in a mess, . . . and not being a frightening sight to those who are sitting there” (quoted in Broom & Kirby, 2013, p. 504).

This need to preserve dignity (or face) with one’s family, may explain why U.S. hospice programs are rejected among the very cultural group historically most committed to family care. When researchers polled Chinese heritage elderly living in San Francisco, people reacted with horror when they learned hospice involves care at home. One woman summed up the general feelings when she said, “If I am dying I become very grumpy; it’s a good idea to send me to a nursing home” (quoted in Enguidanos, Yonashiro-Cho, & Cote, 2013, p. 996).

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Table 15.3 summarizes these section points in “a pros and cons of home care” chart. Now that I have surveyed the health-care options, it’s time to continue our search for a “good” twenty-first-century death by returning to the dying person.

Question 15.8

Although medical personnel set up predictions about how patients are likely to die, death doesn’t always go according to schedule—so these prognostications are often wrong!

Question 15.9

b

Question 15.10

1. Carol will be caring for her spouse at home.

2. If Carol’s spouse has heart disease, he may decline more slowly than if he has cancer.

3. Carol may be terribly worried about her ability to control her husband’s pain.

4. Carol will spend a good deal of money on hospice care.

d

Question 15.11

Here’s what you might say to Melanie: Would you feel comfortable about burdening your family 24/7 with the job of nursing you for months or having them manage the health crises that would occur? How would you feel having loved ones see you naked and incontinent—would you want that to be their last memory of you? Wouldn’t it be better to be in a setting where trained professionals could competently manage your physical pain?