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CHAPTER

Intensive Caring

Hospice and Palliative Care

■ Changing Philosophies

■ Hospice

■ Spread of Programs

■ Providing End-of-Life Care

■ World with Good Death?

■ Falling through the Cracks

■ On the Horizon

In this chapter, we turn our attention to the topic of intensive caring, an expression that denotes high-quality, compassion-driven care for people with life-threatening illness (Bartholome, 1999). The term stands in contrast to intensive care, which is associated with the biomedical model, high-tech life support and heroic efforts to preserve life at all costs (see Chapter 2 ). Intensive caring expresses a philosophy about enhancing the “quality of life” for as long as the person is alive. Today, we do this through two related programs: hospice and palliative care (Saunders, 1991; Connor, 2008, 2018).

In the United States, hospice usually refers to end-of-life care for people who are not expected to live longer than six months. To be eligible for hospice programs in the U.S. patients must have a diagnosis suggesting they have less than six months to live and patients must be willing to forego further efforts to cure their illness (Connor, 2008, 2018). Palliative care programs, on the other hand, are intended to relieve suffering, most often in a hospital setting, but do not require that patients forego efforts to treat their underlying illness. In Canada, the term hospice palliative care was coined to denote all care provided to alleviate the suffering of those afflicted with life-threatening conditions, regardless of treatment setting or disease progression (Ferris et al., 2002; Canadian Hospice Palliative Care Association, 2013). In short, it has no expectations about abandoning curative therapy, nor does it embrace any specific requirement about how long the patient is expected to live.

CHANGING PHILOSOPHIES

According to David Barnard, the former chair of the Department of Humanities at Pennsylvania State University College of Medicine, our norms about end-of-life care are changing from the unconditional acceptance of the biomedical model (see Chapter 2 ) to insistence on a more person-centered approach to care, which he believes has come about in response to three conditions (Barnard, 1998):

1. The effects of medical technology that has blurred the line between life and death, making the end of life an expensive time that is often lived out in pain, with intrusive medical procedures, and an increasing sense of helplessness.

2. The devaluation of symptom control in medicine in favor of treatment intended to cure disease and prolong life.

3. The loneliness of dying arising out of the awkward, distant, and evasive relationships between dying people and their loved ones with their caregivers.

One way to conceptualize this shift is to contrast the modern biomedical model with the newer wellness philosophy, which reflects the dying well ethos that has been emerging within the past several decades (see Table 9.1 ).

Hospice is a person-centered, compassion-driven model of care for people nearing the end of their lives, which also tries to support families during a difficult time. The National Hospice and Palliative Care Organization (NHPCO) (2004b) describes it as a “[m]odel for quality compassionate care for people facing a life-limiting illness, hospice provides expert medical care, pain management, and emotional and spiritual support expressly tailored to the patient’s needs and wishes” (p. 3).

It is an approach that focuses on caring, not curing, and that constitutes a “gold standard” for treating people with life-threatening conditions. It provides expert medical care and pain management, as well as emotional and spiritual support tailored to the patient’s needs and wishes (National Hospice and Palliative Care Organization (NHPCO), 2018). It is a multidisciplinary and team-oriented approach to alleviating suffering, broadly defined, including the physical, social, psychological, and spiritual dimensions, as discussed in Chapter 8 .

As you can see from Table 9.1 , the biomedical model and so-called wellness paradigm reflect different assumptions, ideals, attitudes about death and health, goals of treatment, emphasis, and values. In an article on aging and dying, Marshall and Levy (1990) suggest that all societies have idealized concepts about proper and improper ways to die—the preferred manner of death being called the good death. Today a new approach to the good death is in some ways a return to the old—that is, being at home, surrounded by friends and family; with a minimum of technological intrusion; good pain management; achieving “closure” with respect to unresolved personal affairs; and experiencing some level of dignity in the dying process (Erikson & Erikson, 1997; Levy & Gordon, 1987; Lofland, 1978, cited in Marshall & Levy, 1990).

TABLE 9.1

Contrasting Old “Biomedical Model” and the “Wellness Paradigm”

Biomedical Model

Wellness Paradigm

A—Attitude about disease and death:Disease and death are regarded as enemies that should be attacked and defeated	A—Attitude about disease and death: Disease and death are accepted as a normal part of life
B—Belief about health:Health is thought of as a physical state, characterized by the absence of disease	B—Belief about health:Health is thought of holistically, as a state of total well-being, including the physical, social, psychological, and spiritual facets
C—Care:Care is aimed at curing disease and prolonging life as long as possible	C—Care:Care attempts to promote total well-being—body, mind, and spirit—balancing efforts to prolong life with activities intended to foster quality of life
D—Dealing with death and disease:Treat chronic disease processes and episodes of acute illness	D—Dealing with death and disease:Attend to the physical, social, psychological and spiritual needs of the person, including the individual’s acute and chronic illnesses
E—Efforts aimed at:Defeating death one disease at a time	E—Efforts aimed at:Caring for the whole person; promoting health; preventing illness; relieving suffering; and comforting those who can’t be cured

In the previous edition of this text, we suggested that about two-thirds of us still die in the hospital or a nursing home (Kemp, 2014; National Center for Health Statistics, 2011). The tide appears to have shifted slightly. In 2015 in the U.S., about 36 percent of people died in the hospital, 20 percent in a nursing home, 8 percent in a residential hospice facility, and about 30 percent at home (Centers for Disease Control and Prevention, 2015, cited in Smith & Periyakoil, 2018). In England, from 2015 to 2017, 47 percent of people, less than half, died in the hospital, 22 percent in a nursing home, 6 percent in a residential hospice facility, and 23 percent at home (National Center for Health Statistics, 2018, cited in Smith & Periyakoil, 2018). The recognition that there has been “disconnect” between the ideal of the good death and what really happens probably helps account for the continuing interest in the “dying well” movement (Smith & Periyakoil, 2018).

With increased life expectancy and overall better health, many of us have come to see nearly all technological progress and scientific innovation as good. With respect to end-of-life issues, however, it has contributed to the expectation that we can and should preserve life itself at all costs. The newer paradigm defines a “good death,” as previously described, as the ideal. Although it recognizes that advances in medicine have improved our lives, it also acknowledges that the end of life is a normal experience and should be allowed to unfold naturally. It asserts, however, that, when death does come, the process should be as meaningful and as pain-free as possible.

HOSPICE

Hospice Heritage

The terms hospice, hospital, hostel, and hotel all have their roots in the Latin word hospitium, which conveys the idea of providing hospitality (Phipps, 1988; Saunders, 1998; Sloan, 1992). Bill Phipps (1988) observed that, although many people often use the term hospice for innovative approaches to patient care, most people have probably forgotten its roots in the West.

In the year CE 335, Constantine, the Roman emperor, decriminalized Christianity. Indeed, he would eventually make it the official religion of the empire. In contrast to pre-Christian Roman society, which paid little or no attention to the plight of the underdog, adherents of this new religion were known for caring for the poor and the sick. Consistent with this tradition, Constantine ordered the construction of infirmaries in all Roman cities throughout the empire. In Greek-speaking parts of the empire, Bishop Basil of Caesarea in Cappadocia founded a place of healing. Ephraim, of Syria, did the same in Edessa. And Fabiola, a wealthy Roman widow, brought the idea of hospice back to her native Italy after visiting St. Jerome in Bethlehem (Phipps, 1988; Sloan, 1992). In medieval Europe, it became a fundamental part of the monastic tradition, which even today provides hospitality to pilgrims of all kinds (Phipps, 1988; Saunders, 1998).

Modern Hospice

Today’s hospice movement has led the way to the new dying well paradigm, discussed in the previous section. The term hospice now embodies the very idea of specialized and compassionate care for the dying. Dame Cicely Saunders founded St. Christopher’s Hospice, now considered the first in a long line of modern hospices. Describing the beginnings of St. Christopher’s, Saunders (1977) stated:

■ ■ ■

St. Christopher’s Hospice was originally founded in 1948 with a legacy of 500 Pounds given by a man who, having escaped from the Warsaw Ghetto, died of cancer in a busy surgical ward in London at the age of 40. . . . He died in peace, leaving a heritage that went far beyond his 500 Pounds—a vision of what could be done to help people like himself to die in peace and dignity.

(p. 160)

■ ■ ■

Saunders started her career as a nurse before becoming a qualified social worker. In 1948, she fell in love with a patient, David Tasma, a Polish-Jewish survivor of the Warsaw Ghetto, who was then dying of cancer (Barker, 2005; British Broadcasting Corporation News, 2005; Richmond, 2005). When Tasma died, he left her the 500 British pounds, a considerable sum in those days, and asked that it be “a window in your home” (Saunders, 1977). It was not until 1967, however, that St. Christopher’s would finally open its doors. In the intervening years, Saunders gained additional experience caring for dying patients, earned a medical degree, and ultimately organized the committee that would establish St. Christopher’s (Saunders, 1977).

Unlike the hospices that evolved in the U.S., which generally provide care in the homes of patients, Dame Cicely’s hospice was a specially designed inpatient facility with 54 beds. Later, St. Christopher’s developed an outpatient service (Ingles, 1980; Phipps, 1988; Saunders, 1977). Although Dame Cicely did not invent the term hospice, she renewed and renovated it at a time when providing intensive caring was a lost art. Indeed, St. Christopher’s became an icon for such care (Phipps, 1988; Saunders, 1977, 1998; Sloan, 1992). Today, a simple glass window remains at St. Christopher’s to honor David Tasma’s memory. Dame Cicely died there in 2005.

Hospice has become the “gold standard” of the contemporary “dying well” movement. In the United States, a team of hospice providers—nurse, social worker, volunteer, and chaplain—usually come into the person’s own home to give physical, psychological, social, and spiritual care.

Hospice in North America

Dame Cicely Saunders’s work prepared the way for the rise of the modern hospice movement. The diffusion of hospice, like other social movements, is a phenomenon that spread in a series of stages (Sloan, 1992). In 1963, Dame Cicely Saunders, Elisabeth Kübler-Ross, and Colin Murray Parkes met at a workshop on death and dying being held at Yale University. Florence Wald, the dean of the School of Nursing at Yale, had also attended. Impressed by her vision, Wald brought Dame Cicely back to Yale to deliver a series of lectures on hospice (National Hospice and Palliative Care Organization, 2004a). In 1968, Wald visited St. Christopher’s just a year after it opened. The next year, Elisabeth Kübler-Ross’s book on death and dying hit the shelves, and was greeted with an enthusiastic response. Dame Cicely credits this book and its popular appeal with the surge of interest in death and dying that made North America ripe for the hospice movement (Saunders, 1998; Sloan, 1992).

The ethos of the death awareness and dying well movements, which was embodied in Kübler-Ross’s book, mirrored other societal changes that were unfolding in the U.S. at the time—for example, concern for individual rights as well as consumer protection, and an eagerness to challenge the status quo. Sloan comments, “The larger sociological trends of the 1960s were beneficial in persuading adopters . . . to embrace the hospice concept” (1992, p. 26). Dame Cicely, indeed, became a catalyst for change. When Wald returned from her visit to St. Christopher’s, she formed a committee that started the first hospice in the United States: the Connecticut Hospice. Staffed by volunteers with medical support, it began providing in-home care in 1974 (Saunders, 1998).

Across the border to the north, Dr. Balfour Mount, who had also visited St. Christopher’s, brought its philosophy back to Canada. In 1975, he started Canada’s first hospice service at the Royal Victoria Hospital in Montreal, Quebec (Mount, 1976; Saunders, 1998). Unlike the Connecticut Hospice, which provided in-home care, or St. Christopher’s, which gave care in its own freestanding facility, the program at the “Royal Victoria” operated in a special ward of the hospital. Dr. Mount coined the term palliative care to describe what they did. He preferred the term palliative care to hospice, since for hundreds of years the latter had been used in French-speaking parts of the world to denote a place of last resort for the poor and derelict (von Gunten, Ferris, Portenoy, & Glajchen, 2001). The term palliative care seemed to him a good alternative, since it was acceptable to both the English- and French-speaking communities.

Palliative Care

The term palliative care also has Latin roots, denoting that it is aimed at alleviating suffering (Doyle, Hanks, & Macdonald, 1998b; National Consensus Project for Quality Palliative Care [NCP], 2013; Heidrich, 2016). The way the term is used in the U.S. today, it makes subtle distinctions between it and hospice (Kelley & Morrison, 2015). In the U.S., providing hospice is begun only after efforts to cure have ceased and it is intended for patients in the last months of their lives. Again, the rules of the Medicare program, which funds most hospice care in the U.S., requires that all attempts to cure have stopped. In contrast, palliative care extends the holistic principles of the wellness paradigm, discussed above, to people much earlier in the disease process and does not require patients to forego efforts to treat their underlying disease.

Hospital-based palliative care teams work in dedicated palliative care wards or in specialized consultation services that provide expertise to the patient’s primary care provider.

The World Health Organization (WHO) defines palliative care as having two features: (1) it strives to improve the quality of life for patients and families facing a life-threatening illness and (2) it endeavors to relieve suffering of all kinds (World Health Organization, 2018a). A set of attributes of palliative care have been articulated by the WHO and are summarized in Figure 9.1 , below.

Like hospice, palliative care is an interdisciplinary approach, involving the practice of medicine, nursing, social work, chaplaincy, and other specialities (Kelley & Morrison, 2015). It ideally starts early, when an individual with a serious illness is first diagnosed. It does not require patients to forego efforts to treat their underlying disease. Emphasizing improving the quality of life for people with serious illnesses and their families, it is aimed at treating pain and other symptoms of serious illness, e.g., breathlessness, fatigue, loss of appetite, nausea, constipation (usually from opioids), anxiety, depression or sadness, dry mouth, and problems sleeping. Its practitioners are trained to use advanced communication skills, match treatment to individualized goals, and provide sophisticated care coordination. Overall, it strives to provide an additional layer of support to patients, loved ones, and the clinicians who care for them.

FIGURE 9.1 Summary of World Health Organization Attrributes of Palliative Care.

Source: This figure is based on World Health Organization (WHO) (2018c).

Hospice and Palliative Medicine

Hospice and palliative medicine is an emerging subspecialty in medicine that has been recognized by the American Board of Medical Specialties since 2006 (American Academy of Hospice and Palliative Medicine, 2011, 2018; Kelley & Morrison, 2015). Although at first blush it may seem to be a specialization concerned merely with treating symptoms, it is actually both an art and a science that requires both skill and knowledge (Hui et al., 2015). The skill and knowledge domains are focused on providing high-quality end-of-life care; pain and symptom management; advanced communication, including about difficult conversations; shared decision-making; psychosocial assessment; and specialized coordination and care planning—areas that few physicians learn at medical school (e.g., Bickel et al., 2016; Kelley & Morrison, 2015).

Today, palliative care physicians are attempting to do a much better job partnering with dying patients and their families to enhance their experiences while the gravely ill person is still alive.

Although hospice and palliative care are devoted to alleviating suffering, a closer examination of Figure 9.1 will reveal that palliative treatments can sometimes go further than mere symptom management used to “positively influence the course of the illness.”

Preliminary observational data from community-based palliative care programs and randomized trials have resulted in enhanced symptom management; improved patient and family satisfaction; and significant reductions in hospital admissions, emergency room visits, days in intensive care units, and office visits (Rabow et al., 2013; Ciemins et al., 2006; Spettell et al., 2009; all cited in Kelley & Morrison, 2015). Indeed, this preliminary data suggests that at least in some populations of people receiving palliative care in community settings live longer than those with the same diagnosis who do not receive palliative care (Kelley & Morrison, 2015).

SPREAD OF PROGRAMS

From the mid-1970s to today, the number of programs offering end-of-life care has grown tremendously. Hospices, palliative care programs, and physicians qualified in palliative medicine have proliferated. Information on the growth of programs is briefly summarized here. Keep in mind, however, that, while there is growth in all facets of palliative care, recent studies affirm there are still large numbers of dying patients who don’t get adequate relief for their symptoms (Field & Cassel, 1997; Singer & Bowman, 2002; Teno, Clarridge, Casey, & Welch, 2004; Kelley & Morrison, 2015; Dumanovsky et al., 2016).

As of 2016, there were 4,382 Medicare-certified hospices in the U.S. that provided care to about 1.4 million people (Harris-Kojetin et al., 2016; National Hospice and Palliative Care Organization, 2018). Hospice programs care for 40–50 percent of people who die in the U.S. Over 80 percent of people receiving hospice care are aged 65 and older. About 45 percent of people receiving hospice care in the U.S. were living in their own homes when they died, 8 percent in an acute care hospital, 33 percent in a nursing home, and 15 percent in an inpatient hospice facility (National Hospice and Palliative Care Organization, 2018). In contrast, about 32 percent of Americans who had illnesses that could justify hospice care died at home, 38 percent in the hospital, 22 percent in a nursing home, and 4 percent in an inpatient hospice facility (Pivodic et al., 2015). Figure 9.2 graphically compares the place of death for hospice patients with those in the general population.

FIGURE 9.2 Comparison of Place of Death: Hospice Patients and All Americans.

Source: Based on Pivodic et al., 2015; National Hospice and Palliative Care Organization, 2018.

Today, most nonhospice palliative care in much of the world still occurs in acute care hospitals (Kelley & Morrison, 2015). We can refer to them as hospital-based palliative care programs, or HBPCPs. More than 90 percent of large hospitals (more than 300 beds) and about 75 percent of medium-sized hospitals (50 or more beds) have a palliative care program (Kelley & Morrison, 2015; Dumanovsky et al., 2016; Center to Advance Palliative Care, 2017). Most often, they take the form of interdisciplinary consultation teams, which provide support and expertise to the patient’s other health care providers.

Large hospitals and “mature” programs may also have dedicated inpatient units (Kelley & Morrison, 2015). When such a unit exists, it may or may not be called an inpatient hospice. In most cases, palliative care patients are mixed-in with the general hospital population. In such instances, they are assisted by palliative care teams that rotate in to look in on them, or by their regular providers, who make use of a palliative care consultation team.

Recent innovations in hospital-based services include establishing dedicated ICU teams and comanagement models, in which palliative care specialists join an existing specialty team, such as oncology or neurology (Kelley & Morrison, 2015). In addition, some hospitals establish “triggers,” which automatically initiate a referral to palliative care.

Although hospice programs continue to provide the largest proportion of palliative care in home-based settings, community-based palliative care programs have now been developed to serve seriously ill people who are not eligible for hospice (e.g., Ciemins et al., 2006; Spettell et al., 2009; both cited in Kelley & Morrison, 2015). Although it is uncertain what will transpire during the Trump administration in the U.S., the Affordable Care Act (“Obamacare”) expanded cost-sharing programs, created the option to bundle payment programs, and encouraged the formation of commercially managed Medicare and Medicaid programs that make community-based palliative care programs more feasible.

Convergence

With all the discussions of hospice, palliative care, and palliative medicine, some of the perceptions about the distinctions may be evaporating. The Canadian Hospice Palliative Care Association (CHPCA) suggests there may be a convergence when it comes to the meaning of the terms hospice and palliative care. Indeed, CHPCA adopted the term hospice palliative care to describe the many facets of high-quality end-of-life care (Ferris et al., 2002; Canadian Hospice Palliative Care Association, 2013). “The term ‘hospice palliative care’ was coined to recognize the convergence of hospice and palliative care into one movement that has the same principles and norms of practice” (Ferris et al., 2002, p. v).

You might think of the unifying principles and norms of hospice palliative care as an expression of the paradigm shift that has been the topic of this section. The Last Acts State of the Nation Report contrasts key features of the old biomedical model and the holistic principles that are thought to underlie the wellness ideal—an ideal that seems so important to the hospice palliative care movement (Metzger & Kaplan, 2001). Please consult Table 9.1 . I am suggesting that this ideal as well as the cultural norm of the good death are at the very heart of the present-day paradigm shift.

Figure 9.3 graphically portrays the evolution of the hospice palliative care movement in North America. I use hospice palliative care, the term minted by the CHPCA, as the end-point of the diagram. I do so because the unifying concept embraces both the holistic philosophy and integrated approach that seems so characteristic of the movement today. It concludes our discussion of changing philosophies in end-of-life care.

The Hospice Team

In order to ensure the kind of coordinated care previously discussed, there is a general consensus in the field that good palliative care requires a team approach. A hallmark of hospice, the team concept has been adopted by each of the key professional associations (e.g., Canadian Hospice Palliative Care Association, 2004; International Association for Hospice and Palliative Care, 2004; National Hospice and Palliative Care Organization, 2004b) and is also required under Medicare and Medicaid rules (Moon & Boccuti, 2002; Tilly & Wiener, 2001). The team, whose members may visit on different days and times, typically includes such key professionals as physicians; nurses; social workers; counselors or chaplains; personal care aides; various other kinds of special providers (e.g., physical therapists, occupational therapists, speech therapists, or dietitians); pharmacists, who make recommendations about medications (Lee & McPherson, 2006); and volunteers, who are counted as fully fledged members of the team (Beresford, 1993; Cummings, 1998; Sheehan & Forman, 1996; Kobayashi & McAllister, 2016).

FIGURE 9.3 Evolution of Hospice Palliative Care in North America.

The physician, who usually serves as the medical director, has an obviously important role in supervising the treatment of pain and other symptoms (Beresford, 1993; Cummings, 1998; Sheehan & Forman, 1996; Bial, Desai, & Martin, 2018). Palliative treatment frequently involves the use of pain medication, but it can include a wide range of other methods including surgery, radiation, or even chemotherapy.

The nurse, often the lynchpin of the entire team, frequently functions as treatment team leader or coordinator (Berry, 2010; Olthuis et al., 2006; Mitchell et al., 2012). Nurses are also the team members most likely to have regular contact with patients and families, monitor symptoms, administer medications, and report changes in the patient’s condition.

The social worker is often the person who helps the patient and family deal with the personal and social aspects of the advancing illness and impending death (Oliver & Peck, 2006; Sheldon, 2000; Mitchell et al., 2012). The social worker routinely helps support the patient and family, coordinates with funding sources, locates community resources and makes referrals, and often provides personal and family counseling.

The chaplain or counselor typically supports the patient and family personally and spiritually by listening nonjudgmentally (Williams et al., 2004; Wittenberg-Lyles et al., 2008; Mitchell et al., 2012). Often, they are called on to help resolve old emotional injuries and feelings of guilt. They often assist patients in talking about their lives and helping them achieve a sense of meaning and purpose. Volunteers, some of whom were themselves helped by hospice, are there to support the patient and family in practical ways, such as relieving the primary caretaker so he or she can run errands or simply take a break. Sometimes the volunteers are there just “present” for the dying person and the family as they go through the experience.

PROVIDING END-OF-LIFE CARE

What Hospice and Palliative Care Actually Do

Simply put, end-of-life care is an approach to treating patients with far-advanced disease and a short life expectancy for whom the focus of care should be on relieving suffering and enhancing the quality of life (National Consensus Project for Quality Palliative Care [NCP], 2013). There are four key tasks involved in accomplishing this (International Association for Hospice and Palliative Care, 2004):

• Relieving pain and other physical symptoms.

• Maximizing the quality of life while neither hastening nor postponing death.

• Providing for the patient’s psychosocial and spiritual care.

• Supporting the family during the patient’s illness and the bereavement process.

Most professionals now think of high-quality care as an approach where there is good communication between health care providers and patients; the best possible medical, nursing, and allied care is available; a comprehensive plan is in place and a multidisciplinary team addresses all aspects of the patient’s suffering; consistency and continuity of care exist across treatment settings (home, nursing home, or hospital); steps are taken to anticipate crisis situations and prevent them; caregivers are supported (especially by making respite, or breaks, available); and there is an ongoing assessment of the challenges that face the patients and their families (International Association for Hospice and Palliative Care, 2004; National Consensus Project for Quality Palliative Care [NCP], 2013).

The Experience of Pain

Pain can be defined as the unpleasant sensory and emotional experiences associated with tissue damage (International Association for Hospice and Palliative Care, 2004; National Consensus Project for Quality Palliative Care [NCP], 2013). It is always subjectively experienced, but there are a variety of ways to classify it. Differentiating various types of pain and understanding their causes sometimes helps guide what to do about it. One way to think about pain is to break it down into four broad categories: acute pain, chronic pain, incident pain, and breakthrough pain (International Association for Hospice and Palliative Care, 2004; McQuay & Jadad, 1994; Todd, 2006; Portenoy & Hagen, 1990).

Acute pain is usually due to a clearly identifiable injury or illness, with a definite onset and predictable duration. It is accompanied by easily recognizable distress and clear signs of heightened sympathetic nervous system activity (Todd, 2006). Chronic pain, in contrast, is caused by the effects of a long-term illness process. It generally has a gradual or poorly identified onset, continues without relief, and may become progressively more severe with time (Todd, 2006). Incident pain occurs only under certain circumstances, such as when some body part is in a particular position. It is often best managed by such simple techniques as repositioning the person or body part to minimize the effects (McQuay & Jadad, 1994). Breakthrough pain is very common (Portenoy & Hagen, 1990). It only occasionally erupts, or “breaks through,” the otherwise effective treatment of chronic pain. It requires temporary additional measures to control it.

Untreated pain can be a threat to the well-being of terminally ill people. It hastens dying by wearing the person out, impacting appetite, and interfering with sleep (Bailey, 2000). Patients and family members are justifiably concerned about unbearable pain. It is always appropriate to be vigilant, although they should be reassured to know that severe pain can be treated effectively.

In 1986, the WHO developed a three-step model to help guide the management of cancer pain (1990, 1996, 2018d). Today, there is widespread acceptance of this simple model (EPEC Project, 1999 and 2003), shown in Figure 9.4 .

Most professionals now understand that pain is always experienced subjectively and can never be measured objectively by outside observers. Because of the impact on the quality of life, a key goal of care is learning how to assess it. As briefly mentioned in Chapter 8 , there is an emphasis on considering pain to be a fifth vital sign (Lynch, 2001a, 2001b; Lanser & Gessell, 2001; Torma, 1999). Health care professionals should routinely check on pain in addition to the other four vital signs: pulse, blood pressure, temperature, and respiration (National Pharmaceutical Council & Joint Commission on the Accreditation of Healthcare Organizations, 2001). It can be monitored by simply asking patients to rate their pain on a scale from 0 to 10 (International Association for Hospice and Palliative Care, 2004).

Concerns about Addiction

In recent years, there has been a great deal of concern about the use of opioid use in pain management and the so-called opioid epidemic (Kolodny et al., 2015; Vowles et al., 2015; Stevenson & Cole, 2015). Hospice and palliative care patients and their families are sometimes concerned about using strong pain medications out of fear of addiction. Rarely is this concern necessary. While physical dependence on opioids is a normal physiological response to the regular use of opioids (International Association for Hospice and Palliative Care, 2004), withdrawal is easily done in stages. Also, patients and families might be reassured to know that addiction requires more than physical dependence. It also involves a pattern of pathological pleasure-seeking. Hospice and palliative care patients with severe pain who are treated with opioids for a life-threatening illness need not be concerned about this occurring.

FIGURE 9.4 The WHO 3-Step Ladder: A Guide to Using Medications to Control Cancer Pain.

Other Physical Symptoms and Their Treatment

In addition to pain, there are a number of other distressing symptoms associated with the last stages of illness. These fall into four general types (International Association for Hospice and Palliative Care, 2004):

• Breathing difficulties (e.g., dyspnea or shortness of breath).

• Gastrointestinal problems (e.g., nausea, diarrhea, constipation).

• Weight loss and weakness (e.g., anorexia, fatigue).

• Reduced consciousness and restlessness (e.g., confusion, insomnia, restlessness).

Among the breathing difficulties associated with the dying process are dyspnea, cough, and terminal respiratory congestion (International Association for Hospice and Palliative Care, 2004). Dyspnea is experienced as severe shortness of breath (Ahmedzai, 1998; Grønseth et al., 2014; Heidrich, 2016; National Consensus Project for Quality Palliative Care [NCP], 2013). As anyone who has ever experienced difficult breathing can attest, anxiety quickly erupts. It is sometimes caused by an obstruction to the trachea or bronchia; the reduction in the ability of the lung tissue to process air and distribute oxygen to the body; circulatory problems (including heart); the loss of red blood cells; and anxiety.

Once the cause of the breathlessness is understood, the therapy is aimed at the source of the problem (Heidrich, 2016; National Consensus Project for Quality Palliative Care [NCP], 2013; Laviolette & Laveneziana, 2014). Reassuring the patient as well as repositioning the person can help, but there are a number of other techniques that can be used to improve the condition. These include administering oxygen or using opioids (sometimes infused into inhalers), as well as giving medications that dilate the bronchia, relax the patient, or reduce secretions.

Terminal respiratory congestion, often called the “death rattle,” is the noisy, gurgling respiration heard in some people when they are dying (Murphy & Gross, 2016). It is caused by the accumulation of fluids on the trachea in patients who are unconscious or semiconscious, or who are too weak to spit (Ahmedzai, 1998; International Association for Hospice and Palliative Care, 2004; National Consensus Project for Quality Palliative Care [NCP], 2013). Placing the individual on his or her side, suctioning, and using medications to reduce secretions can help, although these measures are used to comfort loved ones more than the dying person.

Gastrointestinal symptoms associated with the end-stage of life include nausea, vomiting, bowel obstruction, and constipation (International Association for Hospice and Palliative Care, 2004; National Consensus Project for Quality Palliative Care [NCP], 2013). Nausea and vomiting can have many causes, including cancer and the side effects of radiation or chemotherapy, as well as the use of certain pain medications (Mannix, 1999). Nausea and vomiting can be treated with diet, reducing unpleasant smells, using relaxation techniques, and administering antivomiting medication. Bowel obstructions can be effectively treated with a variety of medical interventions (see Reinhold, 1993), surgery, and various medications.

Constipation can have many causes, including inactivity, diet, metabolic changes, obstructions, and various medications, particularly using opioids to control pain (National Consensus Project for Quality Palliative Care [NCP], 2013). In contrast, there is diarrhea. It is not as common as constipation in most types of cancer but it can occur among persons infected by HIV (Sykes, 1998). Often caused by infection, it can be either short-lived or chronic and persistent. The recommended treatment varies depending on the cause but can include using agents that absorb intestinal fluids, or opioids. Weight loss and weakness among terminally ill people can result from diarrhea. It requires medical intervention.

Weight loss and weakness can have other causes as well. These include anorexia and cachexia (Bruera & Fainsinger, 1998; International Association for Hospice and Palliative Care, 2004; Lowey, 2017; National Consensus Project for Quality Palliative Care [NCP], 2013). Anorexia is the reduced desire to eat. It often contributes to the problem. When this is the case, such simple remedies as providing dietary advice, preparing visually appealing meals, and including favorite foods in the diet can help. When weight loss and weakness among cancer patients doesn’t get better with improved diet, it may signal the existence of a more troublesome condition called cancer cachexia—a kind of wasting associated with the cancer itself. It is characterized by abnormally low weight, weakness, and a general bodily decline that interferes with the quality of life (Bruera, 2001; Bruera & Fainsinger, 1998; Kotler, 2000; Martignoni, Kunze, & Friess, 2003; Nagykálnai & Landherr, 2016; Strasser et al., 2016; Tisdale, 2001). Medical experts don’t understand the condition very well but believe it may be due to tumor metabolism and the person’s body spending large amounts of energy trying to fight off infection and fever (International Association for Hospice and Palliative Care, 2004; Martignoni et al., 2003). It remains very hard to treat. Even feeding the person artificially doesn’t generally help.

Impaired consciousness, delirium, and restlessness sometimes occur among terminally ill people (International Association for Hospice and Palliative Care, 2004; National Consensus Project for Quality Palliative Care [NCP], 2013). Delirium is a condition in which there is a global change in thinking and consciousness that is characterized by disorientation, fluctuating levels of consciousness, and impaired thinking (EPEC Project, 1999 and 2003). It can come on quite rapidly. Depending on its origins (it can have multiple causes), it can sometimes be reversed. When the origins of the delirium are determined, the benefits and risks of trying to reverse it should be explored (EPEC Project, 1999 and 2003). When delirious dying persons are agitated, restless, moaning, and groaning, it’s very likely they have terminal delirium, which may not be reversible (EPEC Project, 1999 and 2003; Murphy & Gross, 2016). In these cases, providers and caregivers may wish simply to make the dying person as comfortable as possible, continue speaking to him or her (many believe hearing is the last sense to go), reassure the person as much as possible, and perhaps reduce disquieting stimulation until death occurs.

Providing Psychological, Social, and Spiritual Care

Not all suffering is physical. Dame Cicely Saunders is credited with first using the term total pain in her effort to encourage physicians think about suffering as involving much more than just physical pain (Clark, 1999). To her, it includes the physical, yes, but it also embodies the psychological, social, and spiritual aspects of experience.

Because of the multidimensional nature of the dying experience, the team approach is integral to hospice palliative care. Treating pain and other symptoms certainly helps reduce suffering, but fear, anxiety, and depression in relation to loss—of control, dignity, independence, and the ability to direct the course of one’s life—also affect the dying person psychologically (National Consensus Project for Quality Palliative Care [NCP], 2013). The level of psychological well-being (or distress) is interwoven with the ability to cope. This coping depends on a number of factors, including how well the person has learned to deal with other illnesses and stresses; experiences with the illnesses of others; losses; family stress; personality development; psychiatric and substance abuse; social supports; economic status; culture; and spirituality (International Association for Hospice and Palliative Care, 2004; National Consensus Project for Quality Palliative Care [NCP], 2013).

Many terminally ill patients suffer from depression, a bona fide psychiatric malady characterized by pervasive feelings of sadness; lack of energy; changes in appetite; the loss of interest in pleasure; feelings of helplessness, hopelessness, and worthlessness; and often a diminished sense of self-esteem (American Psychiatric Association, 2000, 2013). In contrast to popular belief, intense depression is not “normal” for anyone, even people with a terminal illness. It is a source of psychic pain and suffering that if left untreated can deprive the person of the energy needed to fight his or her illness. Personal psychotherapy, social support, as well as the use of medications, can often help.

As discussed in the introductory chapter, spirituality is an aspect of life that has to do with meaning and transcendence (Fitchett, 1993). It can be experienced as a connectedness to God, the infinite, one’s fellow human beings, or one’s true inner-self (Ley & Corless, 1988). Whereas most chaplains have their own religious affiliations and “spiritual paths,” they are trained to be “present” for the patients’ experiences, to support them in finding meaning in their experience and nurture their relationship with what the patient experiences as sacred. Peter Speck (1998) suggests there is good evidence to believe that the subjective experience of well-being is enhanced by the ability to engage in activities that give one’s life a sense of meaning (Reed, 1986, 1987), and that a deeply personal experience of spirituality may enhance this (Watson, Morris, & Hood, 1988). The spiritual issues a person deals with when preparing to die are sometimes grouped into three types (International Association for Hospice and Palliative Care, 2004; Speck, 1998; National Consensus Project for Quality Palliative Care [NCP], 2013)—those connected with past, present and future experience.

Those linked to the past include dealing with feelings of guilt and shame; understanding one’s relationships; reevaluating achievements; and coming to terms with past failures and unfulfilled aspirations. Concerns associated with the present include dealing with changes in one’s health; reconciling oneself to current suffering; and learning how to accept rising dependency. Some future-oriented issues include struggling with a sense of hopelessness; anticipating the loss of loved ones; thinking about the dying process; and contemplating an afterlife or nonexistence (International Association for Hospice and Palliative Care, 2004; Speck, 1998; National Consensus Project for Quality Palliative Care [NCP], 2013).

WORLD WITH GOOD DEATH?

There are many groups today that are devoted to promoting excellence in palliative care. They envision a time when everyone who comes to the end of their life can expect to experience the kind of good death discussed so far in this chapter (e.g., American Geriatrics Society, 2002; Ferris et al., 2002; Canadian Hospice Palliative Care Association, 2013; Connors et al., 1995; Field & Cassel, 1997; Jennings, Ryndes, D’Onofrio, & Baily, 2003; Last Acts, 1997, 2003a, 2003b; Metzger & Kaplan, 2001; National Consensus Project for Quality Palliative Care [NCP], 2013). Last Acts, a national coalition of over 50 such groups, developed a set of principles it hopes will lead to high-end end-of-life care. It integrates these principles into five Precepts of Palliative Care (Last Acts, 2003a, 2003b; Petersen, Breakwell, & Callahan, 2014).

In addition, there are many other groups committed to similar aims. Among them are the Milbank Memorial Fund (Cassel & Foley, 1999), the CHPCA (Ferris et al., 2002, Canadian Hospice Palliative Care Association, 2013), the American Academy of Hospice and Palliative Medicine, the Center to Advance Palliative Care, the Hospice and Palliative Nurses Association, the National Hospice and Palliative Care Organization, the National Association of Social Workers, and the National Palliative Care Research Center (National Consensus Project for Quality Palliative Care [NCP], 2013).

Advance Directives, Living Wills, Medical Powers of Attorney, and Do Not Resuscitate Orders

The sophisticated technology we have today has created choices we never had before. Medical personnel can resuscitate a person whose heart has stopped beating, keep the person breathing with a machine, and give him or her the needed nutrition with a feeding tube, even if the individual lacks consciousness or brain functioning. The person can physically survive this way. The question becomes, Would the person want to? In Chapter 13 , we will discuss various forms of “brain death,” human consciousness, and providing or not providing life support. If you end up in such a state, how could you communicate your wishes? An advance directive is a general term for two kinds of legal documents: the living will and medical power of attorney(National Hospice and Palliative Care Organization, 2011; Tolle, Back, & Meier, 2015).

A living will is a document in which the individual provides specific information about the course of treatment to be followed by health care providers if he or she is at the end of life or is unable to communicate (Brown, 2016; Goede & Wheeler, 2015). It is the oldest form of advanced directive used in North America, first proposed by Illinois attorney Luis Kutner (1969). It is called a living will because it is created by the individual while he or she is still alive. It can be called various things, depending on the legal jurisdiction in which the person lives, including “advance directive,” “health care declaration,” and “medical directive” (Brown, 2016; National Hospice and Palliative Care Organization, 2011; Goede & Wheeler, 2015).

There is a specialized living will called Five Wishes, valid in all but eight U.S. states (Aging with Dignity, 2018). It addresses an individual’s personal, emotional, and spiritual needs as well as his or her medical wishes. The Five Wishes specify: (1) who will be empowered to make medical decisions when the person can’t, (2) what medical treatment the person wants and doesn’t want, (3) how comfortable the person wants to be, (4) how the person wants to be treated, and (5) what the person wants their loved ones to know (Aging with Dignity, 2018; Butler et al., 2014).

A medical power of attorney, sometimes called health care power of attorney, health care proxy, or durable power of attorney for health care, is a document that allows you to appoint someone to make health care decisions for you, should you be unable to do so for yourself (National Hospice and Palliative Care Organization, 2011; Hale & Marshall, 2017; Lum, Sudore, & Bekelman, 2015). The reason it is sometimes called durable power of attorney for health care is because general powers of attorney generally cease to be legally binding when the person is no longer competent to make decisions for himself or herself. Language can be added to make a document “durable” (or effective) even when a person becomes incompetent. There is a link for a free PDF version of an advance directive and durable power of attorney for health care in the “Links” section at the end of this chapter.

A do not resuscitate order, or DNR, is a written document directing health care providers not to attempt cardiopulmonary resuscitation if a patient stops breathing or if his or her heart stops beating (Burns et al., 2003; National Hospice and Palliative Care Organization, 2011; White et al., 2018). Although the document is written at the request of the patient or the family, the order must generally be signed by a physician in order for it to become valid. These orders may be written for both a person in a health care facility or at home, such as someone who is in home hospice care. A DNR allows a person to make his or her wishes about end-of-life care known ahead of time in case the person is unable to participate in making these decisions at a future time.

Some Present-Day Realities

As discussed elsewhere in this text, 62 percent of Americans die in a hospital, nursing home, or residential hospice facility (Centers for Disease Control and Prevention, 2015, cited in Smith & Periyakoil, 2018). In England, it is 75 percent (Office of National Statistics, 2018, cited in Smith & Periyakoil, 2018). As you may have discerned from the previous discussion, palliative care programs are a fairly recent innocation. Although it was the exception rather than the rule for hospital and nursing home patients to receive specialized end-of-life care, this pattern is now beginning to change (National Consensus Project for Quality Palliative Care [NCP], 2013; Kelley & Morrison, 2015; Heidrich, 2016).

One of the implications is that many patients who die in the hospital or nursing home do so without the kind of palliative care that meets their physical, social, psychological, and spiritual needs. This came to light with the publication of the highly respected SUPPORT study, the earliest modern study to explore the experience of the dying in North America (Connors et al., 1995). At that time, the records of over 4,300 patients with life-threatening illnesses were reviewed in this study. Both patients and loved ones were interviewed. The results showed that communication between providers and patients (and their loved ones) was generally rated as being poor; aggressive treatment was routine; providers weren’t aware of the resuscitation preferences of patients in nearly half the cases; over one-third of patients who died spent at least ten days in an intensive care unit; and, among patients who were conscious when they died, over half experienced moderate to severe pain.

Today, the situation appears to be less dire. In one study of over a million patients admitted to the ICU in 151 New York hospitals, almost 80 percent of them received palliative care (Hua et al., 2018). Indeed, palliative care experts have the evidence to suggest that palliative care services improve patients’ quality of life, enhance family well-being, and reduce the use of intrusive, unnecessary, and expensive medical interventions (Kelley & Morrison, 2015; Fail & Meier, 2018). Indeed, patients who receive palliative care report feeling supported in their illness experience, informed about navigating the health care system, comforted by the personalized symptom management they receive, and informed so as to make better health care decisions (Hannon et al., 2017).

Eligibility, Access, and Referral

Getting into hospice, like access to all health care, depends on meeting eligibility requirements and having funding. The United States has no universal health care coverage and no universal coverage for end-of-life care apart from the Medicare and Medicaid programs. Medicare is a federally funded program that covers people over age 65 and those with disabilities (Moon & Boccuti, 2002; Centers for Medicare & Medicaid Services, 2014). Hospice became a Medicare benefit in 1982, in large part as a result of advocacy efforts and strong public support for better end-of-life care for the elderly.

Medicaid, which is a joint federal–state program, covers low-income families, indigent seniors, and disabled adults—people who have few assets (Tilly & Wiener, 2001; Buchmueller, Ham, & Shore-Sheppard, 2015). Medicaid is the largest means-tested program in the U.S., covering over 59 million Americans at a cost of nearly $390 billion. For people with assets and good incomes to qualify, they must first “spend down,” or use up, their own resources to pay for care before becoming eligible. The Medicaid program is administered by the states, which use federal guidelines to determine eligibility.

Both Medicare and Medicaid require that persons be diagnosed as having six months to live and be willing to forego all medical care aimed at curing their illness (Moon & Boccuti, 2002; Tilly & Wiener, 2001). In addition to Medicare and Medicaid, most private insurance programs now cover hospice. For a visual representation of hospice funding sources in the United States, see Figure 9.5 .

In Canada, hospice palliative care is a benefit provided in a variety of settings: hospital-based palliative care units, stand-alone facilities, acute care facilities, continuing care beds, and at home (Canadian Hospice Palliative Care Association, 2004, 2014). Services are sometimes coordinated by regional teams who attempt to find a fit between patient need and available resources (e.g., Edmonton Regional Palliative Care Program). Canada has universal health coverage for its citizens, but waiting lists are sometimes a problem and hospice palliative care isn’t always available. As in the United States, Canada is struggling with how to make access to hospice palliative care more available (Canadian Hospice Palliative Care Association, 2004, 2014). In 2002, the Kirby Report, an official government review of the Canadian health care system, lamented that “palliative care services in Canada are often fragmented and frequently nonexistent” (Senate of Canada, Standing Committee on Social Affairs, Science & Technology, 2002, 6, 9.1).

FALLING THROUGH THE CRACKS

Because of the humanitarian philosophy, patient and family focus, team approach, and insistence on providing comprehensive care, hospice palliative care has been called the “gold standard” when it comes to end-of-life care. There are gaps, however, in both the American and Canadian systems. Many people fall through these cracks. In this section we briefly explore some of those fissures. We begin with a story about John and Sarah.

Although the biomedical model can do a lot in terms of preventing an untimely death, the reality remains that we human beings are mortal. The best efforts of the system cannot overcome this truth. The complexity of the system and division of labor created a condition where the key actors weren’t properly communicating with one another. No one told John and Sarah that he was not expected to live more than six months. They were victims of a compartmentalized and impersonal system.

FIGURE 9.5 Hospice Funding Sources, U.S.

In some ways, however, John and Sarah were among the “lucky” ones. They were referred to hospice. John died at home with the benefit of good symptom management. Most of his medical expenses were covered by insurance—a benefit of his job. Others aren’t so lucky. Please see the vignette below, titled “I Didn’t Even Know What Hospice Was.”

BOX 9.1

I Didn’t Even Know What Hospice Was

John was a 45-year-old man when he began to notice blood in his stool. Eventually diagnosed with colon cancer, John underwent extensive radiation treatment and chemotherapy. In and out of the emergency room for various complications, John was eventually given a referral to hospice. “I didn’t even know what hospice was,” Sarah, John’s wife, said, “until the day the hospice intake worker came out to explain the program.” It was not until the worker explained that hospice was for people with six or fewer months to live that she found out John was “terminal.”

By the time John and Sarah were referred to hospice, he had undergone long bouts of illness caused by his cancer as well as the side effects of chemotherapy and radiation. In an effort to eradicate the cancer, his intestines were inadvertently burned by the radiation. After several medical emergencies and many visits to the emergency room, he would eventually die at home with support from a local hospice program. John’s infected bowels, which would no longer function properly, began forming abnormal little tunnels, called fistula—his body’s attempt to provide for drainage. One of these fistula eventually found its way from John’s intestines to his kidney. When it did, his kidney could no longer function and he died. Heavily sedated for pain, John spent the last days of his life at home, in and out of consciousness.

Medicare

As you may recall, Medicare is the largest funder of hospice care in the United States. Hospice became a Medicare benefit in 1983 (Moon & Boccuti, 2002; Moon, 2006; Baseman et al., 2016; Mor & Teno, 2016). Under this benefit, persons diagnosed as having six or fewer months to live can elect to receive hospice under Medicare Part A (the part that covers hospitalization) if they agree to give up on efforts to cure their illness. In 1995, Pam Miller and Paula Mike, of the School of Social Work at Portland State University, did a ten-year follow-up on the program (Miller & Mike, 1995). They identified four problem areas with Medicare:

1. Home care requirement: Medicare hospice benefit requires that almost all care be provided at home. A large number of elderly people don’t have a person who can be with them 24 hours a day, and 18 percent of men and 41 percent of women live alone. The cost of long-term care in a skilled nursing facility or around-the-clock care at home aren’t covered by Medicare.

2. Resources of small communities: Medicare rules require programs to use a professional team. It is hard for small, rural communities to afford this.

3. Estimating prognosis: Medicare rules require the patient to be certified to have six or fewer months to live. Estimating how much time a terminally ill person has left is difficult, with the possible exception of patients with certain forms of cancer. As a result, most people who get hospice will be suffering from terminal cases of cancer; others will be left out.

4. Funding is capitated: This means that programs get a daily fixed rate (see Table 9.2 ). That doesn’t offer much incentive to take on the tough cases, provide higher levels of care, or use helpful but expensive palliative procedures (Centers for Medicare & Medicaid Services (CMS), 2017; Miller & Mike, 1995; Moon & Boccuti, 2002; Baseman et al., 2016; Mor & Teno, 2016).

Medicaid

Medicaid uses Medicare’s hospice requirements, but, unlike Medicare, which covers all people over 65 years of age, Medicaid covers people of any age who have low incomes and few assets, including those who have become impoverished by the high cost of health care. Also unlike Medicare, Medicaid does pay for long-term nursing home stays and in-home services for those still able to live at home. Although expanded eligibility and nursing home coverage are boons to people who need them, there are other concerns about the end-of-life benefits available through Medicaid.

In order to expand the limited research available on end-of-life care for Medicaid beneficiaries, Tilly and Wiener (2001) of the nonpartisan Urban Institute, interviewed 23 national experts in a qualitative study of Medicaid. Their findings suggest four problem areas with Medicaid:

1. Estimating prognosis: The requirement that beneficiaries must have a prognosis of six or fewer months to live creates the same kind of barriers as are created by Medicare rules.

2. Pressure to get pain relief: Like Medicare patients, Medicaid patients must agree to forego efforts to cure their illness in order to qualify for hospice. Nursing home patients often have had difficulty getting adequate pain relief. Some will choose hospice, even if they might otherwise want to continue efforts at a cure.

3. Conflicting standards of care: The rules governing nursing home care, where many Medicaid patients live, and those controlling hospice care aren’t consistent. Nursing homes that might otherwise want to use hospice to help care for their terminally ill patients may be reluctant to do so out of fear of going out of compliance with these regulations.

4. Reduced payment: When nursing home residents get hospice, the Medicaid payment is switched from going directly to the nursing home to going to the hospice. The hospice receives only 95 percent of the nursing home rate, and must then pay the nursing home directly. The hospice must offer the nursing home the reduced rate, which few are willing to accept.

TABLE 9.2

Capitated Medicare Hospice Reimbursement by Level of Care

Source: This table is based on Centers for Medicare & Medicaid Services (CMS) (2017), p. 36,650

The eligibility realities of Medicare and Medicaid are such that people under age 65 aren’t eligible for Medicare and those with income or assets but without insurance are required to “spend down” their assets before they can qualify for Medicaid. They must, in effect, become medically indigent. Because of the high cost of care, the spend-down process typically unfolds rapidly. Since both marital partners hold their assets in common—savings, securities, house, and vehicles—and since these assets must be liquidated to pay for care, when death comes the surviving spouse may be left with large burial expenses but few means with which to pay them.

ON THE HORIZON

The dream of hospice is that everyone should be able to have a good death and do so without bankrupting their heirs. In Chapter 2 , we discussed the efforts of a growing band of people who have become concerned about the excessive use of technology, medicalization, and depersonalization in the way we care for dying people (Benoliel & Dregner, 1995; Callahan, 2000; Cassell, 1993; Kastenbaum, 1993; Kearl, 1996). It is this concern, together with the efforts of a corps of pioneers and present-day leaders that are responsible for the more holistic treatment climate that exists today. Although problems persist, we now have the resources, know-how, and technology to resolve them—if, that is, we also have the will.

Chapter Summary

This chapter began by recalling lessons learned by William Bartholome, a physician who wrote about his own experience as a terminally ill person. He used the term intensive caring to contrast the kind of high-quality care he thought was desirable at the end of life with intensive care, a term from modern medicine that conjures up images of intensive care units and the sort of high-tech approach that strives to prolong life at all costs.

Discussion then turned to changing philosophies of care—a movement of consciousness away from putting one’s total faith in the biologically based biomedical model toward accepting a wellness paradigm. The chapter traced the evolution of this caring ideal—now embodied in the hospice concept—from its ancient religious roots, through medieval monastic expressions, to Dame Cicely Saunders and the founding of St. Christopher’s Hospice, which most sources agree marks the beginning of the present-day dying well movement, which proliferated in home-based hospice programs, hospital-based palliative care units, dedicated ICU palliative care teams, community-based palliative care programs, comanaged palliative care programs, and the new subspecialty of hospice and palliative medicine.

We also discussed some of the present-day realities in end-of-life care. People still fall through the gaps, sometimes because of problems in communicating, sometimes because of barriers in the system itself. Among the barriers to accessing U.S. programs, we observed a lack of universal health insurance and eligibility restrictions in accessing public health insurance.

Finally, we looked to a horizon where everyone can have a good death without bankrupting those left behind. Reflecting on the existing problems surveyed in Chapter 2 , we might take solace in knowing that there is a band of concerned people out there who want to humanize our system. The concerns of those early hospice pioneers gave rise to the dying well movement we have today. What remains to be done is nothing short of fulfilling the promise.

Key Terms

acute pain

advance directive

anorexia

breakthrough pain

cachexia

chronic pain

do not resuscitate order (DNR)

dyspnea

Five Wishes

good death

hospital-based palliative care program (HBPCP)

hospice palliative care

hospice

incident pain

living will

Medicaid

medical power of attorney

Medicare

palliative care

palliative medicine

suffering

terminal delirium

terminal respiratory congestion

total pain

Suggested Activities

1. Write about whatever experiences you may have had with a dying person. As you reflect, consider the things that made the experience of dying difficult or that made a difference to the dying person. What lessons can you find in your experience?

2. Consider the ways in which religion, science, and medicine have influenced your life. What tensions between these two systems do you experience because of their differing ways of understanding the world, if any?

3. Reflect on whatever changes in thinking you’ve experienced as you’ve gone through life. Why did your thinking change? How was life different? What do you think of paradigm shifts?

4. Browse the Internet. Using your favorite search engine, type in such terms as hospice, palliative care, and palliative medicine. Explore the websites you find. Then explore links you find at those sites to other sites. What do you suppose the existence of all these resources say about our society’s interest in end-of-life care?

5. Write a one-page essay about some experience you had with pain. How did it change life for you? How did you cope? Also consider other physical discomforts you’ve experienced. How have they affected you at various times?

6. Reflect on your experiences with bureaucracies—for example, schools, government, hospitals, the military, and so forth. What kinds of experience did you have? How would you describe these systems? What are the advantages and disadvantages of having them?

7. Interview a person with a serious illness or who is elderly. Spend an hour or so listening to the person tell his or her story without offering your own opinions, reflections, or conclusions. Just listen. You may want to tape record it, particularly if this is a person you care about. Wait a day. Listen to the tape if you recorded your interview. Then write a short summary of what you learned about the person.

8. Chart a “life line.” Make a list of all the significant events in your life. On a piece of paper draw a horizontal line. On the line plot these events from beginning to present. You may also want to anticipate the end of your life. What would you like to accomplish between now and then?

9. Make a collage. Using copies of old photos or pictures from magazines, piece together a collage that portrays the important experiences of your life. What was it like as you arranged the pictures in a collage?

10. Put together a family genogram. Chart whatever you know of your family. Use squares to depict males and circles to depict females. Draw lines to show connections such as marriages and children. To indicate death, use an X. Breaks in lines can show breaks in relationships. Strong connections can be depicted with bold, or double, lines; weak ones can be represented with dotted lines. Reflecting on the genogram, what does it say to you about your past, present, or future?