7- Be familiar with each of Kübler-Ross’s five stages in the process of dealing with impending death. In what ways was or is this model helpful to people? What are the key criticisms of this model?
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Most of us don’t give much thought to dying—it doesn’t seem real. So, in this sense, we are temporarily immortal. Dr. William Bartholome was a pioneering pediatric medical ethicist at a time when people in the West didn’t pay much attention to the experience of dying children. After he was himself diagnosed with terminal cancer, he came to realize that the difference between being “terminal” and being “temporarily immortal” was really just a matter of how much time one has left and whether or not one realizes that he or she is dying (Bartholome, 2000a, 2000b). In this chapter, we explore what it means to be terminal—in other words, to live in the valley of the shadow of death. We look at what we know about how human beings conceptualize their dying, comparing this with actual “death trajectories.”
“Death trajectories” were first conceptualized in the mid-1960s by a team of sociologists who were interested in the experience of dying patients and their doctors (Glaser & Strauss, 1965). They were looking at two factors: whether it was known for certain that a person would die and whether or not they knew when it would occur. In only one of four trajectories can one know with some confidence that someone will die and about when this will occur. The most common examples of this type of trajectory occur when a patient has amyotrophic lateral sclerosis (ALS) (Lou Gehrig’s disease) or a very lethal form of cancer, like esophogeal metastatic cancer, the type of cancer that ultimately took the life of Dr. Bartholome, introduced above.
One might say that in this chapter we metaphorically walk with critically ill people who are “in the valley of the shadow.” Within this context, we look at conventional, or traditional, medical treatment, especially with respect to cancer. Then, we briefly explore complementary, or alternative, approaches to treatment, including a fairly rich discussion about the state of the art with respect to the research on the use of cannabis as an alternative treatment for: epilepsy, neurodegenerative diseases, controlling the side effects of anticancer treatment (radiation and chemotherapy), pain, and, indeed, even the treatment of cancer itself.
Then, we review the work of Elisabeth Kübler-Ross (1969), who became interested in the experience of terminally ill patients. Based on interviews with about two hundred dying people, she developed her now-famous stage-based model suggesting that dying people go through a series of stages until they come to accept the inevitable. Although Kübler-Ross’s model has become an integral part of Western culture, the more recent literature calls into question some its claims, especially its assumptions about the grieving experience (see
Chapter 11
; Konigsberg, 2011; Maciejewski et al., 2007).
Within this more critical context, we review a “task-based” approach to coping with the dying developed by Charles Corr. It explores tasks that he believes are necessary to address at the physical, social, psychological, and spiritual dimensions of the process (also see discussion of the “four factor model” in
Chapter 1
).
Next, we explore the role of hope. We conclude with a few reflections about dying inspired by seven “lessons” learned about the process by Dr. William Bartholome, who refers to his own teacher as “the Angel of Death.”
WALKING IN THE SHADOW
■ ■ ■
Why did I feel like such an outcast, such an “Other”? . . . It’s hard to start new friendships. It’s hard to get people willing to invest in a relationship with you when they know your limited future. . . . I began to resent that and to wonder about the relationship between being terminal and being mortal. . . . Yet I, the terminal one . . . was living in a society of people who considered themselves to be temporarily immortal. . . . “You’re mortal” to my “terminal,” . . . It’s not all that much different.
WILLIAM G. BARTHOLOME
“Lessons from the Angel of Death,” Bioethics Forum, 2000, p. 35
■ ■ ■
The preceding quote was written by Dr. Bartholome before he died. The point he makes so well is that life itself is “terminal.” No one gets out alive. Unlike the rest of us, people living with a terminal diagnosis know they are dying. Everyone dies. Based on recent data, we can project that death will visit about 2.7 million people in the United States this year (Heron, 2016; Kochanek et al., 2017). While each experience of dying and death is unique and personal, we can make two generalizations. First, it is clear that infancy seems particularly precarious. If, however, a child survives the first year of life the outlook for those next years of childhood are fairly secure—deaths are few during this period. Second, although death occurs among people in every age range, it becomes significantly more frequent as people age.
Death is relatively rare among the young and much more common among the old. This is actually something of a recent phenomenon in the West. Since so few young people die, people today live longer and become older. This state of affairs has resulted from innovations in public health and medicine that unfolded during the second half of the twentieth century—better sanitation, improved nutrition, the discovery of antibiotics, the widespread immunization of children, and other advances in science and medicine (see
Chapter 2
; Goldberg, 1998; Wilkinson & Lynn, 2001). The life expectancy of a person born in the United States at the beginning of the twentieth century was 47 years; for persons born at the dawn of the twenty-first century, it is over 78 years, depending on race and gender (Heron, 2016; Kochanek et al., 2017).
When life expectancy increases, we can say that the
mortality
rate decreases. With a decreasing mortality rate there is also an increase in the age at which people die. So far, so good, right? Perhaps not. With aging comes greater morbidity—the occurrence of chronic illness and disability—which significantly impacts the quality of life (see Callahan, 1990; Sankar, 1993; Verbrugge, 1984; Wilkinson & Lynn, 2001). This is one of the ways in which dying at the beginning of the twenty-first century is different from what it was at the beginning of the twentieth. With some exceptions, instead of dying in one’s prime from an acute infection or injury, people today, particularly in the West, are far more likely to die at an older age. When they finally do succumb, they tend to be sicker than ever before. With this change in who dies (the old) also comes a change in how we die.
In
Chapter 3
, we discussed the leading causes of death in the United States by age group. To review here, infants are most likely to die from the complications related to birth defects, the complications of premature birth, and complications associated with the mother’s pregnancy (Heron, 2016). For toddlers, causes of death are likely to be accidents, complications associated with birth defects, and homicide (from child abuse). For children aged five to nine it is accidents, cancer, and complications associated with birth defects. For children ten to 14, it is accidents (often auto accidents), suicide, and cancer. For those aged 15 to 24, causes are likely to be accidents, suicide, and homicide (also see
Chapter 7
). For adults in the 25- to 44-year age range, it is accidents, suicide, and homicide. For people aged 35 to 44, it is accidents, cancer, and heart disease. Among middle-aged people, ages 45 to 64, it is cancer, heart disease, and accidents. Finally, for those over age 65, causes of death are likely to be cancer, heart disease, and chronic lower respiratory diseases.
BOX 8.1
The Messengers of Death
Once upon a time, Death confronted a giant while trekking through a mountain pass. Rather than succumbing to Death, the giant wrestled with Death, ultimately overcoming him. Death was left lying near a rock by the side of the trail, exhausted, thirsty, and so weak he was unable to rise. It was at this moment that Death wondered what would happen to the world if he was unable to do his job. Soon, he thought, there will be so many people they would be unable to stand next to each other. Just then, along came a healthy, young man. Taking pity, the young man comforted Death and gave him food and water.
Soon, Death recovered and was grateful. He said to the young man, “Do you know who I am?” The young man said he didn’t. “Well, I’m Death,” he said. “I can’t spare anyone, not even you. However, to show that I’m grateful, before your time comes, I will send messengers to warn you so that you will not be taken by surprise.” The years passed and the young man aged and became ill, but recovered. Then, Death appeared, tapping him on the shoulder. “But you said you’d send your messengers to warn me before it was my time,” the man said. “I did,” chimed Death. “I sent Sickness and Infirmity, not to mention my brother, Sleep, to remind you nightly of my coming.” To this the man could say nothing, so he went away with Death and gave up his life.
Source: Adapted from Grimm’s Fairy Tales.
THE COURSE OF DYING
Ann Wilkinson and Joanne Lynn (2001) comment that various writers have applied a range of terms to patterns of dying. For instance, Elisabeth Kübler-Ross (1969) coined the term stages of dying. Pattison (1977, 1978) used the phrase phases of dying. Schneidman (1977) referred to what people experience at the end of life as responses to challenges. Glaser and Strauss (1965, 1968), followed by Benoliel (1987–1988), who worked with them, used the term dying trajectory.
Dying Trajectories
Sociologists Anselm Strauss and Barney Glaser were among the first modern thanatologists to systematically study the experience of people facing death (Glaser & Strauss, 1965, 1968). As part of their research at several San Francisco Bay Area hospitals, they coined the term dying trajectory. Many years later, Strauss explained that what they wanted to convey was the concept of the course of illness, without resorting to any kind of medical thinking or clinical terminology (Strauss, 1985).
There are two dimensions involved in their concept of death trajectory: certainty of death and timing. Four basic trajectories, or courses, can be discerned as a result of the interaction:
1. Uncertain death at an unknown time.
2. Certain death at an unknown time.
3. Uncertain death with a reasonable estimate of when the outcome would be known.
4. Certain death within a generally known time frame.
In this chapter, we attempt to outline a rough approximation of the four basic trajectories in visual form (see
Figure 8.1
).
Glaser and Strauss were interested in learning how the awareness of death influenced the interaction between dying people and those around them. They identified four patterns: closed awareness, suspected awareness, mutual pretense, and open awareness. In the closed awareness pattern, the dying person does not know he or she is dying. In the suspected awareness pattern, the dying person suspects what is happening but this is not confirmed by those who know. In the mutual pretense pattern, everyone knows about the likely outcome but no one is talking about it openly. One could say this pattern leads to an indirect, or even devious, way of relating. Finally, in the open awareness pattern, death is acknowledged and discussed. It makes sharing, and even enhanced intimacy, possible for all concerned.
One of the problems with any model that attempts to simplify complex experiences like dying is that they tend to generalize. In the real world, death is messy. It rarely fits easily into existing paradigms. Each death, like each life, is individual and unique. We tend to idealize one kind of death—the kind in which a person dies a natural, and predictable, death at the end of a disease process. As you can see in
Figure 8.1
, however, only one of the four basic trajectories lends itself easily to this ideal—that is, an illness with a certain
prognosis
of death that is expected to unfold in a predictable time frame.
There is probably no life-threatening illness as predictable as amyotrophic lateral sclerosis, or ALS (Lou Gehrig’s disease). It is a disease of the nerve cells in the brain and spinal cord that control voluntary muscle movement (PubMed Health, 2011). In ALS, the nerve cells waste away, losing their ability to send messages to muscles. This leads to the inability to move arms, legs, and hands, and eventually to paralysis. The symptoms usually do not develop until after age 50. Death usually occurs within three to five years, although about 25 percent of ALS patients live longer than five years after diagnosis.
Lou Gehrig’s disease and the topic of facing death took on a courageous face in the story of Morrie Schwartz, a retired sociology professor at Brandeis University who wrote several articles for a local newspaper. As a result, Ted Koppel, then of ABC’s Nightline, got interested in his story. They aired an interview with Morrie, which was seen by a former student of Morrie, Mitch Albom, a sports writer who later went on to write a bestselling book about the time he spent with Morrie before he died (Albom, 1991). Not to be outdone, Morrie wrote the story in his own words (Schwartz, 1996).
FIGURE 8.1 Dying Trajectories.
Source: Adapted from EPEC, 1999, 2003; Glaser & Strauss, 1968.
BOX 8.2
Being with Morrie
Morrie Schwartz (1916–1995) was a much beloved professor of sociology at Brandeis University before he retired. He contracted ALS, or Lou Gehrig’s disease, soon after. ALS is a progressively degenerative and fatal disease of the central nervous system that causes the person to increasingly lose control of his or her muscles. Morrie appeared on an episode of ABC’s Nightline and was interviewed by its then host, Ted Koppel. One of Morrie’s former students, Mitch Albom, who was then a successful journalist and broadcaster, saw his old professor on TV. Albom then recalled that 16 years earlier, the day he graduated, Morrie asked, “You’ll stay in touch?”
He hadn’t. As a result of the Nightline appearance, Mitch did get in touch with Morrie and the two of them began to spend Tuesdays talking about old times and the meaning of life. Their experience evolved into a collaboration on a bestselling book, Tuesdays with Morrie, that would then become a movie. Morrie wrote his own book, Letting Go: Morrie’s Reflections on Living While Dying (1996). He died on November 4, 1995. In 1999, his publisher reissued the book under a new title, Morrie: In His Own Words.
Since publishing Tuesdays with Morrie, Albom has written three books, including The Five People You Meet in Heaven (2003) and Have a Little Faith (2009).
ADDRESSING LIFE-THREATENING ILLNESS
Medical Treatment
Although stories like Morrie’s are gripping dramas, the most common type of life-threatening illness is cancer. Indeed, cancer remains the most common diagnosis for persons referred to hospice (Taira, Kataoka-Yahiro, & Sy, 2017; National Hospice & Palliative Care Organization, 2010; also see
Chapter 9
). The National Cancer Institute estimates there will be over 1.7 million new cases of cancer diagnosed in the U.S. and over 600,000 deaths from it in 2018 (National Cancer Institute, 2018a). The good news is that it is no longer the automatic death sentence it once was. When there appears to be a reasonable chance of survival, patients and their health care providers will usually opt to pursue treatment intended to cure the illness, especially in the early stages.
While there are many different cancers and cancer treatments, the most common of these are surgery, cryosurgery, chemotherapy, and
radiation therapy
(National Cancer Institute, 2011). Surgery can be effective in the treatment of cancers that have not spread, but it is usually used in conjunction with other therapies. Cryosurgery is often less invasive than traditional surgery. It is the use of extreme cold produced by liquid nitrogen or argon gas to kill abnormal tissue.
Chemotherapy is a general term used to describe a type of treatment that uses drugs to stop the growth of, destroy, or prevent cancer cells from replicating themselves (National Cancer Institute, 2011). Traditional chemotherapy is designed to kill fast-growing cells, like cancer. Unfortunately, it also affects other fast-growing cells in the body, like bone marrow, the cells that grow hair, and those that line the mouth and the intestines. This helps explain some of the common side effects of “chemo,” including fatigue, nausea, hair loss, reduced blood cell counts, and sores.
Targeted therapy is a special type of chemotherapy that is designed to target specific kinds of cancer cells. For example, it is well known to oncologists that renal cell carcinoma (kidney cancer) has a genetic defect that makes this type of cancer vulnerable to certain drugs, like pazopanib (Votrient®), which interferes with cancer cell reproduction (Motzer et al., 2014, 2015). The side effects of targeted therapies are sometimes less severe than what is experienced with traditional chemotherapy. There are also immunotherapy drugs available, like nivolumab (Opdivo®), that combat cancer by enhancing the person’s own immune system to attack the cancer (Schumacher & Schreiber, 2015). In addition, a great deal of research is now being done with DNA and genetic therapy (Stewart & Wild, 2017; Teo et al., 2016).
About half of cancer patients receive some type of radiation therapy at some point during treatment (National Cancer Institute, 2011, 2018b). Radiation therapy involves the use of high-energy radiation to shrink tumors and kill cancerous cells. The types of radiation delivered include X-rays, gamma rays, and charged particles. Sometimes, radioactive substances, like radioactive iodine, are introduced into the bloodstream to kill the cancer cells. Depending on the patient’s condition, radiation can be curative (be used to help cure the illness) or palliative (intended to alleviate unpleasant symptoms), or both. Unfortunately, there are also potential side effects (West et al., 2014, National Cancer Institute, 2018b). Fatigue and nausea, depending on the site of the radiation, are among the most common. In addition, radiation therapy can damage healthy tissue, which can lead to a variety of other possible complications.
Complementary and Alternative Medicine (CAM)
In addition to the conventional cancer therapies described above, many people also choose to explore complementary and alternative medicine (CAM). Indeed, some cancer care centers integrate elements of complementary and alternative approaches. According to the National Cancer Institute (National Cancer Institute, 2011, 2018c), this is a group of medical and health care systems, practices, and products that are not presently considered to be part of traditional or conventional medicine. Conventional medicine is medicine that is practiced by physicians and by health care professionals who work with them, including registered nurses, physical therapists, occupational therapists, psychologists, and social workers.
A young person undergoing chemotherapy, which attacks fast-growing cancer cells. Unfortunately, it also affects other fast-growing cells, such as hair.
People in developing parts of the world often do not have access to basic medical procedures, drugs, and vaccines (Debas, Laxminarayan, & Straus, S. E., 2006). And, in the industrialized world, a fairly large number of people may choose to explore the use of complementary and alternative therapies that seem efficacious even though they may lack scientific evidence supporting their use (Debas, Laxminarayan, & Straus, S. E., 2006; Shaw, 2015; Adams, Tovey, & Easthope, 2017). Although medicine has been proven to be highly effective with a wide range of acute and chronic illnesses, not all people have access to traditional medicine and not all illnesses respond well to conventional approaches. In addition, lifestyle, diet, obesity, lack of exercise, and stress are believed to contribute to a wide variety of health issues. In such cases, alternative approaches may be helpful.
Complementary and alternative methods include naturopathic medicine, an approach to healing practiced by naturopathic physicians, who use many of the following tools and techniques; biologically based practices, e.g., the use of vitamins and other supplements; creative therapies, like music and art therapy; manipulative and body-based approaches, like chiropractic medicine and massage therapy; mind–body medicine, e.g., yoga, meditation, and the use of relaxation techniques; alternative medicine, e.g., traditional Asian healing methods, acupuncture, and acupressure; and energy medicine, e.g., reiki (Debas, Laxminarayan, & Straus, 2006).
CANNABIS
In recent years, there has also been an increasing interest in the use of cannabis (marijuana) as an alternative approach to treating seizure disorders, major neurodegenerative diseases, the side effects of chemotherapy, and, indeed, perhaps even the various cancers themselves (Abrams & Guzman, 2015; National Cancer Institute, 2017).
The use of cannabis, or marijuana, as medicine dates back thousands of years (Abrams & Guzman, 2015; National Cancer Institute, 2017). It was reintroduced in the West in the 1840s by W. B. O’Shaughnessy, a physician who learned of it as a result of his experience in India when working for the British East India Company. It was said to have pain-relieving, sedative, anti-inflammatory, antispasmodic, and anticonvulsant properties. Indeed, it was widely used in the United States until 1937, when the Marihuana Tax Act became law, a law that was opposed at the time by the American Medical Association. Passage of the law was spearheaded by Harry Anslinger, who was the director of the Federal Bureau of Narcotics from 1931 until 1962. When the marijuana tax law was being considered, he testified before Congress that marijuana was the most violence-causing drug in the history of humankind. Because of the prohibitive cost of the tax and the stigma associated with the use of marijuana, the medicinal use of cannabis became unpopular. In 1970, it was classified as a Schedule I drug under the Controlled Substances Act. This meant it was regarded as having a high potential for abuse with no accepted medical use.
Although marijuana, or cannabis, continues to be listed as a Schedule I substance in the United States, modern research on its potential medicinal effects began in Israel in the 1960s with the work of Dr. Raphael Mechoulam and his colleagues. Indeed, they were the first scientists to isolate the chief active ingredient in cannabis, delta 9 tetrahydrocannabinol (THC) (Gaoini & Mechoulam, 1964; Mechoulam & Gaoni, 1965). Allyn Howlett, a professor of physiology and pharmacology at Wake Forest Medical School in the U.S., and her team, were the first to identify cannabinoid receptors in the brain (Devane et al., 1988). This led to the recognition that we have an endocannabinoid system, a network of receptors that is sensitive to stimulation by endocannabinoids, cannabinoids that are produced naturally in the body. These endogenous cannabinoids are chemically similar to the cannabinoids produced outside the body, like those found in cannabis, including THC, the ingredient believed to be responsible for producing the intoxicating marijuana “high.”
Scientists now understand that the endocannabinoid system has at least two types of receptors, CB1 and CB2. CB1 receptors were first identified in 1988 (Abrams & Guzman, 2015; National Cancer Institute, 2017). By 1990 scientists had cloned them, identified their DNA sequence, and mapped their location in the brain, chiefly in the basal ganglia, cerebellum, hippocampus, and cerebral cortex (although it is now believed they exist in virtually all body tissues). Two naturally produced endocannabinoids that interact with these sites are anandamide (AEA) and 2-AG. In 1993, CB2 receptors were identified outside the brain, the highest concentrations being found on the B-lymphocytes and natural killer cells, suggesting that CB2 receptors may play a role in the immune system (National Cancer Institute, 2017).
The two most common cannabinoids found in cannabis are THC and CBD (Abrams & Guzman, 2015; National Cancer Institute, 2017). As suggested above, THC is the compound most closely associated with the psychoactive “high” that users experience when consuming cannabis. CBD, the next most abundant cannabinoid found in cannabis, has no such psychoactive effect.
BOX 8.3
Charlotte’s Web
The use of CBD gained public notoriety in the U.S. with the case of Charlotte Figi, a little girl with a very serious form of epilepsy called Dravet Syndrome (Young, 2013; Maa & Figi, 2014). Charlotte had her first seizure when she was three months old and by the time she was five years old she began losing developmental milestones and her family was told she had reached the “end of the road.” Many medications and a ketogenic diet had all failed. Charlotte’s mother had heard the account of a California parent who had successfully treated their epileptic child with cannabis. Although initially discouraged from pursuing cannabis therapy by physicians and people in the Colorado cannabis industry (where Charlotte and her family lived and where its use is legal), she ultimately found a grower with a high-CBD strain of cannabis. After getting the approval of their team of epileptologists and pediatricians, she began treating Charlotte, starting low and slowly increasing the dose Charlotte received. After three months, Charlotte went from 300-plus convulsions per week to two to three per month (Maa & Figi, 2014). The growers have subsequently named the strain of high-CBD cannabis “Charlotte’s Web,” which is now being made available to other children suffering with severe seizure disorders.
The earliest historical accounts of using cannabis for medicine are documented in China, circa 4000 bce(Maa & Figi, 2014). There is also a historical account in Persia several hundred years ago of a person being successfully treated for epilepsy (Klein, 2015). In modern history, research on the use of CBD began in the 1970s, with several studies scientifically confirming the effectiveness of CBD in treating seizure disorders, even very serious cases (Carlini et al., 1973; Wada et al., 1975a; Wada et al., 1975b; Cunha et al., 1980). Although the science was promising, it didn’t get the attention of the mainstream scientific community. Indeed, Dr. Mechoulam, the Israeli scientist who first isolated THC, lamented that after some 35 years no one had attempted to replicate these studies (Klein, 2015). Fortunately, this trend may be changing. Recently, a team of researchers published the results of a clinical trial in the prestigious New England Journal of Medicinethat show that the use of CBD is effective in treating Lennox-Gastaut Syndrome, a severe early-onset form of epilepsy (Devinsky et al., 2018).
In addition to the promising literature about the use of CBDs in the treatment of seizure disorders, there is also evidence in the literature to suggest that cannabis and/or cannabinoids may be beneficial in treating key neurodegenerative diseases; pain; the side effects of anticancer treatment (i.e., the loss of appetite, nausea, and fatigue associated with the use of radiation and chemotherapy) and perhaps even the various cancers themselves (Abrams & Guzman, 2015; National Cancer Institute, 2017; Scotter, Abood, & Glass, 2010).
Although the reasons are not yet very well understood, cannabinoids show promise in treating several important neurodegenerative diseases, i.e., Huntington’s disease (HD), multiple sclerosis, (MS), Alzheimer’s disease, ALS, and Parkinson’s disease (PD) (Glass, 2001; Scotter, Abood, & Glass, 2010). Animal studies suggest that the use of the endocannabinoids anandamide (AEA) and 2-AG (see below) may help protect against hippocampal neuron damage in HD patients. Sativex®, a mixture of THC and CBD (see below) has been shown to be effective in in clinical trials for treating the neuropathic pain, disturbed sleep, and spasticity of MS patients (Rog et al, 2005; Rog et al., 2007; Wade et al., 2006; Collin et al., 2007; all cited in Scotter, Abood, & Glass, 2010). Synthetic and plant-derived THC has had similar effects (Karst et al., 2003; Wade et al., 2003; Svendsen et al., 2004; Iskedjian et al., 2007, cited in Scotter, Abood, & Glass, 2010). THC has been effective in reducing tremors and prolonging life in ALS in animal studies (Raman et al., 2004, cited in Scotter, Abood, & Glass, 2010). There is mixed evidence that cannabinoids help mediate the effects of levodopa, or L-dopa, the chief drug used in the treatment of PD (Scotter, Abood, & Glass, 2010).
Clinical trials to test the antiemetic effects of cannabis for the control of nausea were first done in the 1970s and 1980s (Sutton & Daeninck, 2006, cited in Abrams & Guzman, 2015). Dranobinol (synthetic THC) and nabilone (a synthetic analog of THC) were tested in a number of clinical trials. Drabinol was approved by the FDA in 1986 for use as an antiemetic, antinausea medication for patients receiving chemotherapy. Nabilone was approved in Canada in 1982, but has only recently become available in the U.S. In 2001, Tramèr et al. conducted a systematic review of 30 randomized studies comparing these medications with a placebo or conventional antiemetic. Oral dranobinol and nabilone, as well as intramuscularly administered levonantradol, were tested. They were found to be significantly more effective in treating chemotherapy-induced nausea and vomiting than prochlorperazine, metoclopramide, chlorpromazine, thiethylperazine, haloperidol, domperidone, or alizapride (Tramèr et al., 2001).
As of 2015, there had been three controlled clinical trials evaluating the use of smoked cannabis for chemotherapy-induced nausea and vomiting (Ben Amar, 2006; Abrams & Guzman, 2015). In two of these studies, smoked cannabis was made available only after dronabinol was unsuccessful. The third study was a randomized, double-blind, placebo-controlled trial involving 20 adults. One-quarter of patients reported beneficial effects. Thirty-five percent preferred oral dronabinol, 20 percent preferred smoked marijuana, and 45 percent had no preference.
With respect to appetite and weight gain, there have been at least two controlled trials that demonstrate that oral THC stimulates appetite and may slow weight loss in patients with advanced cancer (Ben Amar, 2006). In a clinical trial done with 469 participants, investigators looked at patients who received 2.5 mg of oral THC twice daily, 800 mg oral megestrol (a synthetic similar to progesterone) daily, or both (Abrams & Guzman, 2015). Forty-nine percent of participants in the oral THC group experienced increased appetite and 3 percent gained weight. Seventy-nine percent of participants who received megestrol reported increased appetite and 11 percent gained weight.
With respect to pain, there is now a fairly significant body of research suggesting that cannabis is helpful in controlling pain (Abrams & Guzman, 2015). CB1 agonists, like anandamide (AEA) and THC, appear to exert a strong analgesic, or pain-relieving effect, on the central nervous system. CB2 agonists, like 2-AG and CBD, appear to exert an analgesic effect on peripheral systems in the body, with CB2 agonists acting to attenuate the release of inflammatory agents, such as histamine and serotonin, and on keratinocytes (epidermal cells that produce keratin), so as to enhance the release of opioids in the body (Ibrahim et al., 2005, cited in Abrams & Guzman, 2015). Nabiximols (Sativex®) is a cannabis extract with a 1:1 ratio of THC:CBD and has been approved in Canada for the relief of pain associated with advanced cancer and MS (National Cancer Institute, 2017).
There are at least four studies that provide encouraging clinical data on the effects of cannabinoids on chronic cancer pain, which is often severe, persistent, and resistant to treatment with opioids (Noyes & Baram, 1974; Noyes et al., 1974; Johnson et al., 2010; all cited in Abrams & Guzman, 2015). The most recent of these studies investigated the effects of whole-plant extract preparations on 177 cancer patients who were treated with either a THC-CBD extract, a THC extract, or a placebo (Johnson et al., 2010). The results indicated that pain relief was superior in patients treated with the THC-CBD extract.
With respect to anxiety, depression, and sleep, many, but not all, patients given cannabis experience elevated mood. Although the effects appear to depend on the “set and setting” (Zinberg, 1984) in which it is used and prior experience, many patients seem to experience mood elevation after exposure to cannabis (Abrams & Guzman, 2015; National Cancer Institute, 2017). Enhanced sleep among cancer patients is also reported with exposure to cannabis (Russo et al., 2007; Ware et al., 2010). Abrams and Guzman (2015) argue that, for cancer patients suffering from anorexia, nausea, pain, depression, anxiety, and insomnia, a single agent, like cannabis, that can address all these symptoms may be an invaluable addition to existing therapies and may be particularly helpful in providing relief for cancer patients (Bar-Sela et al., 2013).
The suggestion that cannabis may help in the treatment of cancer is controversial. However, there are in vitro and animal studies showing that cannabinoids have a potential role in cancer therapy (Abrams & Guzman, 2015; National Cancer Institute, 2017). For example, there is evidence from these studies that has shown that THC and other cannabinoids are able to inhibit tumor growth by affecting the signaling pathways such that it leads to cancer growth arrest, cell death (apoptosis), inhibition of angiogenesis (growth), and metastasis (spreading) (Pertwee, 2014; Guzman, 2003; Velasco, Sánchez, & and Guzmán, 2012; Pertwee, 2014; Bowles et al., 2012; Bifulco et al., 2006; De Petrocellis et al., 1998; McKallip et al., 2002; Patsos et al., 2005; Sarfaraz et al., 2005; McAllister et al., 2005).
The potential advantages of using cannabinoids include that they appear able to kill cancer cells but not adversely affect surrounding tissue, and may even help protect healthy tissue from cell death (Abrams & Guzman, 2015). This is especially important when treating very critically sensitive tissue, like that of the brain. Although we do not currently have human clinical trials, a team of researchers in Spain has shown that cancerous tumors in mice and rats will shrink in response to activating CB1 and CB2 receptors (Torres et al., 2011; Marcu et al., 2010).
Unfortunately, there are no major human clinical trials in the literature showing cannabis to be effective in the treatment for cancer in humans (National Cancer Institute, 2017). There is only one published report of a small pilot study of the intratumoral injection of THC in patients with recurrent brain lesions, but there was no significant clinical benefit (Guzmán et al., 2006; Velasco, Sánchez, & Guzmán, 2012). Dr. Mechoulam laments that clinical trials are essential if we are to fully test the potential of cannabis in the treatment of cancer (Klein, 2015). To make matters worse, in the U.S. scientists who wish to conduct studies are often thwarted by the burdensome, and often conflicting, regulations of multiple governmental bodies. Not only this, but the cannabis permitted for use in U.S. studies must come from the University of Mississippi, and may be quite different from the many other strains that are now available from other sources (Klein, 2015).
In summary, it appears that the use of cannabinoids helps with appetite, the adverse effects of radiation and chemotherapy, and pain control (Abrams & Guzman, 2015; National Cancer Institute, 2017). It is still not possible, however, to claim that using highly concentrated cannabis extracts, or oils, can cure cancer. Indeed, there have not as yet been any rigorous clinical studies involving human beings that might justify recommending that patients forego conventional therapies in favor of medicinal cannabis (National Cancer Institute, 2017).
However, scientists who take cannabis research seriously suggest that cannabis does not appear to interfere with traditional cancer treatments, that its benefits appear to outweigh its adverse effects, and that it should probably be considered more often. Abrams and Guzman (2015) lament, “Many providers would frown upon the use of a relatively benign inhaled psychoactive substance while freely writing prescriptions for pharmaceutical agents with significantly greater cost, potential for addiction or abuse, and more negative social impact overall” (p. 10).
PROGNOSIS
The term prognosis is a commonly understood medical term that denotes an estimate about the likely outcome of a patient’s case. Reflecting on the clinical literature as well as their own work, Wilkinson and Lynn (2001) note that there seems to be a clear “terminal” phase in only about 23 percent of deaths. In 58 percent of cases, death occurs suddenly within the context of a serious chronic illness, such as chronic heart disease or dementia. In 17 percent of cases, death strikes with no apparent warning. Wilkinson and Lynn comment:
■ ■ ■
Only a few patients will have a short, well defined period that justifies special services or special attention. . . . Most people with chronic illnesses never have a defined time in which to “wrap up” their lives, plan for death, or consider hospice care.
(p. 447)
■ ■ ■
Although most people have a sense that prognoses are only estimates, we still seem to want to rely on these physician estimates. Indeed, Medicare uses estimates about projected longevity in determining funding eligibility for hospice programs. As we discuss more fully in the next chapter, Medicare will provide hospice funding for persons who have a prognosis of six months to live or less. In the mid-90s, an investigation called the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT) was undertaken in an effort to better understand problems in providing end-of-life care (Connors et al., 1995). We will discuss the SUPPORT study in more detail in the next chapter, but what I’d like to say here is that Joanne Lynn, one of SUPPORT’s principal investigators, did some additional analysis using data from the study, partly in an effort to get a better handle on the efficacy of prognosis (Lynn et al., 1996, 1997).
Using both the prognostic methodology of the SUPPORT study itself as well as the estimates from physicians, Lynn and her colleagues (Lynn et al., 1996; Lynn, Harrell, Cohn, Wagner, & Connors, 1997; Wilkinson & Lynn, 2001) came to the startling conclusion that most seriously ill patients die sooner than predicted, and that physicians and patients alike tended to avoid describing what was happening as “dying” until this outcome was unambiguously clear. Using SUPPORT criteria, Lynn and her colleagues were able to determine that 17 percent of those who actually died within one day were estimated to have had two months left. Using the same SUPPORT methods, they found that, of those who actually died within a week, 51 percent were thought to have had two months to live. Median physician estimates were comparable. In 10 percent of cases, physicians wrongly prognosticated that those who actually died within a day would live for two more months. They similarly estimated that 30 percent of those who died within a week would live for two months.
KüBLER-ROSS’S STAGES
There is undoubtedly no more famous model for understanding the experience of terminally ill patients than Elisabeth Kübler-Ross’s stage-based model of dealing with the awareness of dying. A psychiatrist who had recently begun working at the University of Chicago Hospital, Kübler-Ross was approached by four students from the Chicago Theological Seminary who were interested in undertaking some research on dying. As she recounts in her classic book, On Death and Dying (1969), she spoke with a colleague, Dr. Sydney Margolin, about the request. As a result, they decided to approach the task by directly interviewing terminally ill patients in the presence of the students.
When Kübler-Ross began to approach attending physicians about speaking with their patients, she ran into unexpected problems, much as Herman Feifel had a decade earlier (see
Chapter 2
; Neimeyer & Fortner, 1997). Recalling the reactions of her medical colleagues, Kübler-Ross stated:
■ ■ ■
I did not get one single chance to get near such a patient. Some doctors “protected” their patients by saying that they were too sick, too tired or weak, or not the talking kind; others bluntly refused to take part in such a project.
(KÜBLER-ROSS, 1969, P. 23)
■ ■ ■
Undaunted, Kübler-Ross continued on and would eventually get access to terminally ill patients. As time went on, their simple idea would evolve into what has come to be called the “Chicago Seminar,” a fully sanctioned class, in which students would observe as Kübler-Ross thoughtfully interviewed dying patients. The idea caught on, and before long not only did she have students attending her seminar but physicians and staff began showing up, too, now eager to listen to these fascinating exchanges.
Famed thanatology pioneer, Elisabeth Kübler-Ross, is seen here at her home in Scottsdale, AZ, late in her career. She is surrounded by the many photos, books, and gifts she collected or received from friends, colleagues, and students.
By the time On Death and Dying (1969) was published, Kübler-Ross had interviewed over 200 patients about their experience. As a consequence, she would develop the stage-based model for which she has become so well known (see
Table 8.1
). Because of the popularity of this model, many people are familiar with the five stages of dealing with death she proposed: denial and isolation, anger, bargaining, depression, and acceptance. In describing the work of dying, she suggests that the process of moving through these stages begins when the patient learns of the fatal prognosis.
TABLE 8.1
Summary of Elisabeth Kübler-Ross’s Stage-Based Model on Dealing with Dying
Stage
Denial and Isolation
After the initial shock, this is the first response. As a way of protecting the self from the devastating news, the patient denies the reality of the situation. According to Kübler-Ross, the reaction of the patient is “No, not me. It cannot be true!”
Anger
When denial can no longer be maintained, and the reality sets in, it is replaced by feelings of anger, rage, envy, and resentment. No longer able to deny the reality of the situation, the question for the patient becomes “Why me?”
Bargaining
According to Kübler-Ross, the next stage of adaptation is one that involves trying to bargain, perhaps with health care personnel or with God, to postpone the inevitable. Kübler-Ross suggests that, when anger fails, it may be an attempt to ask more nicely.
Depression
Feelings of hopelessness and depression are natural responses that ensue when the effect of other emotions has worn off, and the patient comes face to face with the reality of his or her situation. In addition to the future prospect of dying and the present loss of functioning, the depression is a response to such things as the lengthy treatment, hospitalization, and financial burdens. Kübler-Ross describes two types of depression: reactive and preparatory. In the reactive type, the patient responds to losses already experienced. In the preparatory type, the patient responds in the present to losses that are anticipated to occur in the future.
Acceptance
In some respects, depression prepares the way for acceptance, the final stage in Kübler-Ross’s model. In this stage, the patient, having worked through feelings of anger and depression, is able to come to terms with fate. During this stage, Kübler-Ross observes, the person may be in and out of sleep. Acceptance is not a necessarily a happy state of affairs, merely one of recognition and resignation.
Source: This table is adapted from Kübler-Ross, E. (1969). On Death and Dying: What the Dying Have to Teach Doctors, Nurses, Clergy and Their Own Families. New York: Collier Books
In thinking about Kübler-Ross’s work, one of the things we might keep in mind is that she was deeply interested in learning from and affirming the experience of the terminally ill people with whom she worked (1969). During a period when it was all too common for professionals to “pathologize” patients, she expressed a great deal of concern about the importance of understanding the experience of the dying in a way that respected what it was like for them. According to Kübler-Ross, moving through the stages is a normal process—one that forces the patient to respond to the prospect of death as well as the realities of his or her current circumstances. Herself a practicing psychiatrist with a deep interest in the human psyche, Kübler-Ross was a leader in interpreting what dying patients experience as a normal part of a dreadful process. Commenting about denial, she stated that it is “a healthy way of dealing with the uncomfortable and painful situation with which some of these patients have to live for a long time” (p. 39).
Critiques of the Model
Over four decades after it was introduced, Kübler-Ross’s work has continued to have an undisputed appeal to the imaginations of sincere people who wish to understand the plight of dying people. According to one text on the subject, “It has directed caregivers and lay people alike to thoughtful consideration of issues related to dying patients, as well as to the universal human confrontation with death.” (DeSpelder & Strickland, 1999, p. 157). I think we could take this a step further to say that Kübler-Ross’s stages have become a well-integrated part of Western culture. While she had argued for fluidity, give and take, the possibility of experiencing more than one response at a time, and the feasibility of going back and forth between stages, many professionals have expressed considerable concern about the model and how it has at times been inappropriately, indiscriminately, and thoughtlessly used (Corr, 1993; Corr, Nabe, & Corr, 2003, 2005, 2008; Corr, Corr, & Doka, 2018; Kastenbaum, 2001, 2008, 2016; Konigsberg, 2011). For a summary of key criticisms identified by Robert Kastenbaum (2001, 2008, 2016), a thanatology pioneer and important author in the field, see
Figure 8.2
.
FIGURE 8.2 Kastenbaum’s Criticisms of Elisabeth Kübler-Ross’s Stage-Based Model.
Source: Adapted from Kastenbaum, R. (2008). Death, Society, and Human Experience (10th ed.). Boston, MA: Allyn & Bacon.
Kastenbaum (2001, 2008, 2016) points out that, although dying people sometimes use denial, become angry, try to bargain with fate, or fall into depression, these are experiences that are not unique to dying people, nor do they constitute the full range of experiences they undergo. He also points out that in addition to interviews with dying patients, there are other sources of information that might help us test the model and better understand the experience of the dying.
Kastenbaum (2001, 2008, 2016) and Corr (1993, 2003) suggest that one of the greatest misuses of Kübler-Ross’s model has been to imply that the dying process, as outlined in the model, is
normative
or prescriptive—in other words, that it has been used as the standard for how the process should unfold. As a result, well-meaning but misinformed helpers have abused it. The behaviors dying people use to cope have been, and continue to be, at risk of being misunderstood or adjudged as being “dysfunctional” when they don’t conform to Kübler-Ross’s stages. Kastenbaum (2001, 2008) also cautions that by putting so much emphasis on what happens in the supposed stages of dying, the person is treated primarily as a dying person, with the emphasis on dying, and not as a complete human being. Dying people are more than their diagnosis, Kastenbaum points out. Finally, he tells us, there are other circumstances that can exert a tremendous influence on how the dying process unfolds. It isn’t just about internal processes. We ought to pay attention to these factors as well, he insists.
In an essay written over three decades ago, Charles Corr, the chief author of another text on death and dying (Corr, Nabe & Corr 2003, 2005, 2008; Corr, Corr, & Doka, 2018) suggests we consider that there are both things that we should and should not learn from Kübler-Ross’s work (Corr, 1993). See
Table 8.2
.
Rather than thinking of the dying process as something that happens in stages, Corr suggests we might be better off if we framed the whole experience as a special category of coping. He generally agrees with Kastenbaum’s list of concerns. Indeed, he says, “As we develop our alternative model, we might turn Kastenbaum’s (1998, 2001, 2008, 2016) criticisms into positive guidelines for our work” (Corr, 1993, p. 80). Using Kastenbaum’s criticisms of Kübler-Ross’s framework, Corr (1993) suggests that we may wish to make use of the following principles as we attempt to develop an alternative.
1. Set aside stages.
2. Refrain from thinking about dying as a linear process.
3. Try to be clear about methods.
4. Emphasize describing what actually happens and forbear from prescribing what ought to happen.
5. Consider the totality of the dying person’s experience.
6. Attend to the influences that emanate from the dying person’s immediate environment.
TABLE 8.2
A Summary of Corr’s Suggestions about Lessons We Should and Should Not Learn from Elisabeth Kübler-Ross’s Work
Lessons We Should Not Learn
Lessons We Should Learn
1. There is no reason to believe there are only five ways of coping with dying
1. Those who are dying are still alive and often have unfinished needs they want to address
2. There is no reason to think that those five stages are interrelated as stages in some more encompassing dying process
2. We cannot become effective helpers unless we listen actively to those who are dying
3. There is no reason to think that the stages Kübler-Ross proposed ought to be normative or “prescriptive”
3. We need to learn from the dying in order to know ourselves better
Source: Adapted from Corr, C. (1993). Coping with Dying: Lessons That We Should and Should Not Learn from the Work of Elisabeth Kübler-Ross. Death Studies, 17, 69–83
In concluding our review of Kübler-Ross’s stage-based model, we may wish to put it in a broader context. Corr (1993), I think, astutely observes that we should consider the person of Kübler-Ross when we consider the model she has made famous. A psychiatrist, she developed professionally in her native Europe, where psychoanalytic theory has played a dominant role. Corr (1993) notes that Kübler-Ross’s model is based on the patient’s use of defense mechanisms, including denial, as a way of dealing with threats to the psyche that result from impending death. I agree with Corr when he suggests that it is well to consider the potential biases of theorists when weighing the implications of applying their work. He comments that “a careful examination of On Death and Dying reveals that its emphasis, not surprisingly, is on defense mechanisms” (Corr, 1993, p. 72). Remarking on Kübler-Ross’s use of psychotherapeutic language when she suggests it is important for dying patients to work through their issues, Corr observes, “Dying is not a psychiatric illness” (Corr, 1993, p. 72).
Task-Based Approach
Based on an address he made to the Annual Conference of the Association for Death Education in 1991, Charles Corr wrote a rather compelling paper calling for a model to replace Kübler-Ross’s decades-old stage-based one (Corr, 1992). A key element of his proposal was the assertion that we needed a model that accurately describes coping with dying. He suggests it is a process that goes beyond being a reaction to the threat of death or a defense against psychic trauma. Coping with dying is an active process, he suggests. It involves awareness of, and efforts to contend with, the many events and challenges that confront a person who is dying. The differences between the two models pivot on the premise that reacting is a negative, passive, process; coping is an active one that involves taking steps to manage what happens.
Corr (1992) suggests that any adequate model about coping with dying ought to do four basic things:
1. Provide a basis for understanding all dimensions, and all the individuals involved.
2. Foster empowerment by emphasizing the options available to the dying person.
3. Emphasize participation—the shared aspects of coping with dying—those aspects in which people come together to help each other.
4. Provide guidance for care providers and helpers.
Corr (1992) endeavors to accomplish these four things through what he calls a task-based approach. The way he portrays this model, tasks represent work that may, or may not, be undertaken by those who are coping with dying. In Corr’s view, they aren’t prescriptive—in other words, the tasks are not things that must be done, or ought to be done, by the dying person. Rather, they are things that may be helpful or desirable. Corr says, “I prefer to describe them as discretionary, although I realize that some may be more or less necessary and others recommend themselves more insistently” (p. 83).
Describing the genesis of his task-based model, Corr (1992) notes that the hospice and death awareness movements sprang forth from the realization that dying people are still living, breathing human beings. He describes his own model as being rooted in the same understanding. He comments that, although it may seem obvious that the dying are still people, this is all too often lost within the complexities of the modern health care milieu. Consistent with the holistic philosophy introduced in
Chapter 1
, Corr suggests that we look to the needs of dying patients in four basic areas, which he refers to as dimensions of coping with dying. They are:
1. Physical
2. Psychological
3. Social
4. Spiritual.
TABLE 8.3
Dimensions of Coping in Corr’s Task-Based Model of Coping with Dying
Table 8.3
is a visual representation of the four dimensions, together with examples of tasks Corr associated with each.
This four-pronged approach is both simple and compelling. The physical dimension certainly includes such tasks
hydration
(providing fluids), elimination, and the management of pain. These are discussed in more detail in the next chapter. For now, it may be enough to note that because pain hasn’t always been properly attended to, many concerned health care providers are advocating that it be monitored as a
fifth vital sign
(the other four being temperature, heart rate, blood pressure, and respiration). Corr (1992) suggests that such issues as autonomy, security, and the richness of life (also known as quality of life) falls within the psychological sphere. Relationships are a feature of the social dimension. Corr identifies two key types: (1) those with close, significant, people and (2) those with other people that take place in one’s broader social network (e.g., people in the neighborhood, congregation, or community). Corr does not attempt to define the spiritual dimension, although he does note it’s a broader concept than religion. He points to such deeds as attempting to find a sense of meaning as the kind of thing that falls within the spiritual domain.
HOPE
In the social sciences,
hope
has sometimes been thought of as an elusive, mysterious, or “soft” concept (Farran, Herth, & Popovich, 1995). Used as a verb, a noun, and an adjective, Ronna Jevne and Cheryl Nekolaichuk (2003) comment, “Its descriptions have spanned soul and goal, being and doing, process and outcome, and state and trait” (pp. 189–190). According to Farran, Herth, and Popovich (1995):
■ ■ ■
Hope constitutes an essential experience of the human condition. . . . A way of thinking, a way of behaving, and a way of relating to oneself and one’s world . . . has the ability to be fluid in its expectations, and in the event that the desired object or outcome does not occur can still be present.
(p. 6)
■ ■ ■
Farran and colleagues suggest that hope is a process with at least four clear attributes: experiential, rational, relational, and spiritual (transcendental).
As you can see from
Table 8.4
, the attributes of hope in this model are somewhat similar to the dimensions of coping seen elsewhere—with a twist (Farran et al., 1995). Jevne and Nekolaichuk (2003) suggest that “Hoping and coping are intricately intertwined” (p. 11). Note that the experiential, rational, relational, and spiritual (transcendental) attributes of hope in
Table 8.4
are beautifully and poetically expressed in this model as being the pain, mind, heart, and soul of hope. In a paradoxical way, hope comes into existence only as a result of coming face to face with some undesirable and unavoidable trial or threat. The individual subjectively desires a positive outcome that may not always be likely but is nevertheless objectively possible. Other people can foster the hope by their own love and caring, as expressed by projecting a positive attitude and confidence, or simply being truly present for the person. Farran and colleagues describe the spiritual or transcendent aspects of hope as being related to faith about oneself, a higher power, or a sense of confidence in a positive outcome that has not yet become an eventuality.
TABLE 8.4
Four Attributes of the Process of Hope
Source: This table is adapted from Farran, C. J., Herth, K. A., & Popovich, J. M. (1995). Hope and Hopelessness: Critical Clinical Constructs. Thousand Oaks, CA: Sage.
Ronna Jevne, the former director of the Hope Foundation in Edmonton, Alberta, suggests that, whatever else hope is, it is capable of changing lives and enabling affected individuals to “envision a future in which they are willing to participate” (Jevne & Nekolaichuk, 2003, p. 190). In relation to the experience of cancer, it seems that not only is hope important because of the now-well-documented relationship between hope and one or more positive health outcomes but also because of its intrinsic value (Farran et al., 1995; Jevne & Nekolaichuk, 2003). Hope can be directed at a particular outcome, such as cure, remission, or freedom from pain, or it can be experienced as the desire for some generalized, albeit unspecified, future good (Dufault & Martocchio, 1985).
LIVING IN THE LIGHT
We now turn from the experience of living in the shadow of death to living in the light of death (Bartholome, 2000b). You may recall that we began the opening of this chapter with a quote from William Bartholome. Early in his career, Dr. Bartholome was thrust into the arena of pediatric bioethics when, as a pediatrics resident at the Johns Hopkins Hospital, he was involved in the landmark 1970 Baby Doe Hopkins case, which involved a child born with multiple birth defects who was allowed to die. In the ensuing years, he would devote much of his career to helping dying children, medical bioethics, and teaching—until, that is, he himself succumbed to metastatic adenocarcinoma of the esophagus, an especially lethal form of cancer.
People with the type and severity of cancer experienced by Dr. Bartholome usually die relatively quickly. He would live on for five more years—a span he would refer to as a gift beyond his wildest imaginings. By his own account, he would be transformed during this time. In a meditation he wrote several months after “getting the bad news,” he used the expression, “living in the light of death” to describe his metamorphosis. It has also become the inspiration for this section of the chapter. Indeed, it is about hope and transformation as much as it is about dying.
LESSONS FROM THE ANGEL OF DEATH
In the case of William Bartholome, the particular hope for a cure from his cancer would not have been a very reasonable one. With the cancer having spread to several lymph nodes and his liver, his doctors were very clear that it wasn’t a matter of if his cancer would end his life, as his doctors expressed it; rather, it was a matter of when. He underwent “radical palliative surgery” with the hope that it might buy him some time. The surgery and other “intangibles” gave him a little over five more years of living. Without hesitation, Dr. Bartholome attributed this lengthy respite to his experience of getting married again. Between the time of his surgery and his death he would celebrate five “last” Christmases with his new wife, Pam, his children, and many friends. By his own account, this was a remarkable gift of time. During the interval, he lived his life—enjoying time with family and friends, worked as long as he could, and became a teacher to us, leaving several reflections and an essay titled, “Lessons from the Angel of Death” (Bartholome, 2000a).
As Dr. Bartholome recounts, his life began to change from the moment he realized what he was up against. As you might imagine, his life was turned upside down. To use his words, it was “a world unraveling” (Bartholome, 2000c). Almost from the outset of learning of his diagnosis, however, Dr. Bartholome looked beyond the specter of death, which, as he described it, was sitting on his shoulder, to how he might live until he died. From the unraveling strands of his old life, he would weave a new one:
■ ■ ■
I have no desire to go back to the frantic life I was living before—a life dominated by things-to-do lists and organizers and calendars; a life in which I did little more than juggle an almost overwhelming burden of things that needed to get done.
(Bartholome, 2000d, p. 19)
Four years later, he wrote:
I don’t want . . . to go back to living the life I was before . . . now every aspect of my life is miraculous. I want to live each day . . . as if it will be the last time I am “above ground.”
(Bartholome, 2000e, p. 25)
In June of 1994, my life was visited by a teacher, the likes of which I had never previously encountered. From this teacher I have been taught lessons in a way that I had never learned before. . . .
I have learned about what illness means in a way that I couldn’t possibly learn from textbooks or professional journals or even by carefully listening to patients and families describe their illness experiences.
WILLIAM G. BARTHOLOME
“Lessons from the Angel of Death,” Bioethics Forum, 2000, p. 29
■ ■ ■
Dr. Bartholome articulated seven lessons he learned from the Angel of Death. Although you miss out on the joys of reading these lessons directly, and in the prose style of its author, I nevertheless include a brief summary in
Figure 8.3
.
While the idea of the “Angel of Death” may conjure up a sense of foreboding, Dr. William Bartholome believed he learned important lessons from the “Angel of Death” that made his final days profoundly more meaningful.
FIGURE 8.3 Summary of Dr. William Bartholome’s Seven Lessons from the Angel of Death.
Source: Adapted from Bartholome, W. (2000a). Lessons from the Angel of Death. Bioethics Forum, 16(1), 29–36.
The metaphors of living in the shadow and living in the light of death provide a distinct contrast and way of looking at the complexity of the experiences of dying. There is no single such experience, but rather a variety of them, each being individually and uniquely different. Only a small proportion of people are lucky enough to know in advance that they will die soon, yet the “deathbed scene”—the veritable model for terminal illness—has become the social norm. Those who have an illness with a clear “terminal stage” have, if they are told, the opportunity for consciousness about their impending death, and a period of time to suffer, to hope, to plan, and to live until they die. Such was the stuff of Doctor Bartholome’s dying. As odd as it may sound, death was like “sugar” to him (2000e). Although perhaps bittersweet, he wrote that the awareness of dying nevertheless enriched his life. With little future to consider, there was only the present. He used it as an opportunity to learn a new way of living. With no clear-cut terminal stage—the experience of most people—dying is often a less certain and more lingering affair.
LIFE INSURANCE, WILLS, AND TRUSTS
Included in Lesson 1, William Bartholome learned as he was drying how important it is to get your affairs in order for the sake of those left behind. This means making your wishes known and providing for your loved ones. A
will
is a legal document in which one declares what they want to happen with assets and who will manage estate after they die (American Association of Retired Persons, 2011). The person one appoints to manage affairs after death is often called the executor because he or she executes what the deceased has already decided. The will generally specifies who inherits large assets—such as homes, retirement funds, and bank accounts—but it can also specify who to will get such personal things as particular photographs, mementos, and automobiles. It addition, it can specify who will become the guardian of any minor children who might still be at home. Although laws vary from jurisdiction to jurisdiction, people with simple estates can usually make use of online resources or do-it-yourself will kits, which are widely available. For those with more extensive estates, the services of an experienced attorney are often a good investment.
A revocable
living trust
is a written document that designates a person to manage your property (American Association of Retired Persons, 2011), including yourself. You create a trust while you are living. So long as you are legally competent, a person can change or dissolve it at any time for any reason. Once you die, it cannot be changed. While still living, people generally appoint themselves and their spouses as the trustees, or persons designated to manage your affairs. Both wills and trusts establish who gets what, when, and how. The advantages of a trust are that they are private while you are still alive and they provide a way to avoid probate court after you die. Living trusts can be more complicated than wills and may require the services of an attorney. However, just as with wills, there is a wide range of online resources that can help most people put one together.
Life insurance is something of a misnomer. It is really a contract between a policy holder and the insurance company, in which the insurance company agrees to pay a designated beneficiary a sum of money upon the death of the insured person. Insurance of various kinds are frequently offered to eligible employees as a benefit, so you should check with the human resources department of any present or future employer to determine the benefits and eligibility requirements.
Life insurance is a complicated topic, and one is cautioned to explore the options carefully before purchasing any form of life insurance. However, we can generally say there are two basic types of life insurance:
term insurance
and
whole life
coverage. Term insurance provides life insurance coverage for a specified period of time in exchange for the payment of a regular premium (Insurance Information Institute, 2011). The policy cannot be cashed in; it buys protection in the event of death and nothing else. With whole life coverage, there is a fixed annual premium, guaranteed death benefits, and guaranteed cash values, depending on when the policy is cashed out. In addition, there are relatively low-cost accidental death policies that pay off only in the event of accidental death. Most policies assess the risk of death and base insurability and the cost of premiums on the likelihood of death. Many policies have exclusionary clauses. For example, they commonly will not pay out in the event of suicide.
BOX 8.4
Focus on Practice: Dealing with Four Dimensions of Dying
In 1969, Elisabeth Kübler-Ross ignited the social consciousness about end-of-life issues. Based on her work with dying patients, she suggested there are five stages in coming to terms with dying. Charles Corr (1992) observed that Kübler-Ross’s model had been often misused. He suggested a task-based model as an alternative that includes attention to the physical, social, psychological, and spiritual dimensions. Richard Groves and his colleagues advise attending to three aspects of the spiritual experience (Groves & Klauser, 2005).
1. Coming to terms with dying: Kübler-Ross’s work should inform us that those facing death wish to come to terms with and share their struggle. We can help by being present, listening, and allowing the dying person the opportunity to share his or her experiences and struggles. Without imposing any expectations, you may wish to consider the degree to which the person is accepting of his or her situation. Resolve to support the person as the person contends with whatever end-of-life issues he or she may struggle with.
2. Tasks of dying: Corr (1992) helps bring focus to the many issues faced at the end of life: physical, social, psychological, and spiritual. As you journey with the dying person, make sure you attend to such physical issues as pain and shortness of breath. A simple pain scale, rating it from 1 to 5, can be used to monitor physical pain. Consider the social dimensions, such as family issues and funding realities. Pay attention to emotions, thoughts, and behavior. How might these things inform ways to help?
3. Spiritual pain: Groves and Klauser (2005) suggest there are at least four dimensions of spiritual pain. These relate to issues of finding meaning, forgiveness, relationships, and hope about the future. Use the poles on the end of each spectrum as a way to dialog about the person’s experience. You may be surprised at what you learn.
Chapter Summary
This chapter began with a brief quote from Dr. William Bartholome in which he writes about what it’s like to have a terminal diagnosis in a world full of people oblivious to the prospect of death. We then focused on causes of death in the twenty-first century at various ages, noting that our present-day experiences are quite different from those in earlier times. Today, it is common for old people to die, but death is rare for the young. It was not always so. With this change came a change in how we die—now more commonly with chronic disease. We looked at a model of dying trajectories, first developed by Glaser and Strauss (1968). Using a matrix, we differentiated these dying trajectories and noted that while we generally imagine the deathbed scene and think of the kind of death as being associated with a terminal stage as the norm, most people actually die at an unpredictable time from chronic illness.
Then, we turned our attention to traditional, or conventional, approaches to dealing with serious illness, such as ALS and cancer. In this context, we looked at the key weapons in the armamentarium of the field of medicine: surgery, cryosurgery, chemotherapy, and radiation, including some discussion of newer approaches to chemotherapy, such as targeted therapies, immune therapy, and the use of DNA in designing the most effective treatment possible.
Then, we discussed complementary and alternative medicine, approaches to treatment that complement or are alternative to traditional therapies, such as naturopathic medicine, chiropractic medicine, massage therapy, creative therapies, energy therapies, and mind–body therapies, and finally we turned to a fairly robust discussion of the use of cannabis as an alternative, reviewing an emerging body of literature about its efficacy in cancer treatment.
Next, we looked anew at Elisabeth Kübler-Ross’s famous (1969) model about stages of dying, which she developed after interviewing over 200 dying patients. We also explored criticisms of the Kübler-Ross model and then reviewed an alternative, task-based, model, articulated by Charles Corr (1992). We noted that this new model is in important ways more holistic and inclusive, encompassing the physical, emotional, social, and spiritual dimensions of dying, much like the four-facet model offered in
Chapter 1
.
We shifted our attention from living in the shadow to living in the light of death. We briefly explored some recent work on the role of hope, noting that even in the case of terminal illness there is room to hope for some general, albeit unspecified, future good. In this light, we heard the story of Dr. William Bartholome, who left us an account of his own experiences as a dying person—a legacy of lessons he learned from the Angel of Death. And, finally, we discussed some of the practical realities for anyone facing death (all of us): life insurance, wills, and trusts.
Key Terms
amyotrophic lateral sclerosis (ALS)
chemotherapy
cryosurgery
defense mechanisms
dying trajectory
endocannabinoid system
fifth vital sign
hope
hydration
life insurance
living trust
morbidity
mortality
normative
prescriptive
prognosis
radiation therapy
term insurance
whole life
will
Suggested Activities
1. Draw a time line of your life. On a piece of paper draw a horizontal line, representing birth to the present. Indicate years along the line and include significant events. Consider “where” you were in terms of your development, awareness, and state of mind. What sorts of things were influencing you? What kind of impact were you having on others?
2. Make a list of people you have personally known who have died. Consider their age and the kind of death they experienced. What happened? Who was around? Did they become ill or did they die suddenly and unexpectedly? Did the manner of death make a difference to them and those around them?
3. Reflect on your relationship with a dying person, or a person you know who has died. Did you and the person who eventually died know they were dying? As a result, what did you experience? How has this person’s death impacted your own life? Did you learn anything from the experience?
Suggested Reading and Viewing
• Albom, M. (1997). Tuesdays with Morrie. New York and Toronto: Doubleday.
This deeply moving book recounts the lessons taught by Morrie Schwartz to the author during the last days of Schwartz’s life. Mitch Albom, a student, begins to meet with Morrie after seeing him appear with Ted Koppel on an episode of ABC’s Nightline.
• Schwartz, M. (1996). Morrie: In his own words. New York: Delta Trade Paperbacks.
Morrie Schwartz, the subject of the book Tuesdays with Morrie, endeavors to teach us lessons of living while he is dying. With warmth, wisdom, and humor, Morrie shares his thoughts on such things as what it means to live with physical limitations, handle frustration, grieve losses, maintain one’s involvement with life, and consider death at the end of life.
• Moyers, B. (2000). On our own terms: Moyers on dying. [Video series]. Available: Public Affairs Television, Inc.,
www.films.com
.
This is a series of four videos, first aired on PBS in 2000. Bill Moyers takes us into the world of the dying and those who care for them. Program 1 focuses on living with dying; Program 2 deals with a different kind of care; Program 3 focuses on a death of one’s own; and Program 4 deals with a time to change.
• Bosanquet, S. (Producer), & Nichols, M. (Director). (2010). Wit. [Motion picture]. United States: Home Box Office, Inc.
This is an intense and moving portrayal of a university literature professor diagnosed with life-threatening ovarian cancer. The protagonist discovers a fine line between life and death that can only be walked with wit.
• Klein, Z. (Producer and Director) (2015). The scientist. Available at:
.
This is a documentary available for viewing on YouTube that tells the story of Dr Raphael Mechoulam and colleagues, the first to isolate delta 9 tetrahydrocannabinol, the active ingredient in cannabis, and which is widely believed to produce the psychoactive high experienced by users. Dr. Mechoulam ascertained that THC interacts with the endocannabinoid system (ECS), which scientists now believe may be the largest receptor system in the human body. The documentary profiles many of the scientific discoveries made by Dr. Mechoulman and colleagues around the world, which suggest that cannabis and cannabinoids are efficacious in treating seizure disorders, several key neurodegenerative disorders, the adverse effects of anticancer treatment (chemotherapy), and pain, and which may even be beneficial in treating the various cancers themselves.
• Frank, A. W. (1991). At the will of the body: Reflections on illness. New York: Houghton Mifflin Harcourt.
A deeply moving memoir in which sociologist Arthur W. Frank reflects on his experience with two life-threatening illnesses, a heart attack and cancer. He explores his transformation from person to patient and attempts to grapple with what having a life-threatening illness can teach us about life. He describes what can happen when we are pushed to the extreme and explores what it means to be human.
• Rosenberg, L. (2000). Living in the light of death. Boston, MA: Shambhala.
Noting that getting older, becoming ill, and dying are difficult subjects in today’s Western world, Larry Rosenberg, a Buddhist practitioner, teaches us about an ancient Buddhist path to liberation—death awareness. He suggests that becoming intimate with aging and mortality, we can uncover greater understanding of ourselves, relationships, and all things, thereby achieving a measure of freedom from suffering.
• Sourkes, B. M. (1982). The deepening shade. Pittsburgh, PA: University of Pittsburgh Press.
This book deals with the medley of issues that confront patients, families, and caregivers when they face a life-threatening illness. Written as a resource for psychiatrists, psychologists, social workers, and other professionals who encounter patients like these in their practices, it helps professionals put a human face on this troubling experience.
Links and Internet Resources
• Center for Practical Bioethics
www.practicalbioethics.org
This freestanding practical bioethics center is dedicated to raising and responding to ethical issues in health and health care. It serves as a resource center dedicated to educating and empowering health care professionals and their institutions, advocating for patients’ rights, training ethics committees, and supporting change though ethics education and leadership. Resources on aging and end-of-life care are available. See “online store” in the “resources” tab for video and print materials, including some featuring Dr. William Bartholome.
• National Cancer Institute Resource on Cannabis and Cannabinoids
This article provides a fairly succinct discussion on many of the important issues related to the use of cannabis and cannabinoids in cancer treatment. It reflects the work of some of the most creative and insightful investigators currently working in the field.
• On Our Own Terms: Moyers on Dying
www.pbs.org/wnet/onourownterms
This PBS-sponsored site is the online home for the pioneering four-part, six-hour series On Our Own Terms: Moyers on Dying. The website contains a vast array of articles (many written by professionals featured on the series) and other resources of interest to any student of death and dying.
• Sacred Art of Living
www.sacredartofliving.org
Founded by Richard and Mary Groves, the Sacred Art of Living Center was begun as a one-of-a-kind school for spiritual formation. They offer a range of programs and services, including an acclaimed workshop on the Sacred Art of Living and Dying, America’s first comprehensive training program on spirituality in end-of-life care.
• Hope Foundation of Alberta
www.ualberta.ca/HOPE
Affiliated with the University of Alberta, the Hope Foundation of Alberta is dedicated to understanding and enhancing hope in individuals, families, and institutions. It offers opportunities for research, specialized counseling, speakers, workshops, and hands-on experience.
• Nolo Press
www.nolo.com
Nolo Press was born out of the frustration of two legal aid lawyers in California out of concern for people who didn’t qualify for free legal aid but couldn’t afford lawyers. They offer do-it-yourself books, PC software (but not for the Mac OS X), and online legal forms to help people get quality legal information.
• American Association of Retired Persons, Estate Planning
www.aarp.org/money/estate-planning
AARP, the largest organization in the United States representing elderly people, offers a variety of free resources on its estate planning pages. Included are articles on insurance, wills, and trusts.
Review Guide
1. Be familiar with the definitions of each of the concepts that were printed in bold.
2. What are the four basic dying trajectories in the dying trajectories matrix, drawn from the work of Glaser and Strauss (1968)? About what percentage of people die with an illness in which there is a clear terminal stage? What proportion of people die as a result of complications during the course of a chronic illness?
3. Be familiar with the various approaches to treating serious, life-threatening, illnesses, especially cancer.
4. Be familiar with the key terms associated with complementary, or alternative, approaches to dealing with life-threatening medical conditions.
5. Be fully familiar with key terms and concepts associated with the recent research on the use of cannabis as a complementary, or alternative, approach to treating cancer.
6. What is prognosis? How accurate is prognosis? To what degree can we rely on them?
7. Be familiar with each of Kübler-Ross’s five stages in the process of dealing with impending death. In what ways was or is this model helpful to people? What are the key criticisms of this model?
8. What are the four key elements of Charles Corr’s task-based model? What kinds of things are subsumed in each? How does this model differ from the stage-based model? What does it say about what a model ought to do? Does the model accomplish these? In what ways is this model more holistic?
9. What is the spiritual dimension? How is spirituality defined?
10. What is hope? How can it be defined? What are the faces of hope? What is the difference between particular and generalized hope? Why is it important to understand the distinction?
11. What are the lessons we can learn from the experience of people like Dr. William Bartholome? To what degree is their experience like and unlike what is outlined in the models of dying we discussed in this chapter? What lessons did Bartholome say he learned from the Angel of Death?
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