Chapter 12: Death and Dying

1. Compare the leading causes of death in the United States with those of developing countries.
2. Compare physiological, social, and psychic death.
3. List and describe the stages of loss based on various models including that of Kubler-Ross.
4. Explain the philosophy and practice of palliative care.
5. Describe hospice care.
6. Differentiate attitudes toward hospice care based on race and ethnicity.
7. Compare euthanasia, passive-euthanasia, and physician-assisted suicide.
8. Characterize bereavement and grief.
9. Express your own ideas about death and dying.

The objectives are indicated in the reading sections below.

Introduction

We have now reached the end of the lifespan. While it is true that death occurs more commonly at the later stages of age, death can occur at any point in the life cycle. Death is a deeply personal experience evoking many different reactions, emotions, and perceptions.

“Everything has to die,” he told her during a telephone conversation. “I want you to know how much I have enjoyed being with you, having you as my friend, and confident and what a good father you have been to me. Thank you so much.” she told him. “You are entirely welcome.” he replied. He had known for years that smoking will eventually kill him. But he never expected that lung cancer would take his life so quickly or be so painful. A diagnosis in late summer was followed with radiation and chemotherapy during which time there were moments of hope interspersed with discussions about where his wife might want to live after his death and whether or not he would have a blood count adequate to let him proceed with his next treatment. Hope and despair exist side by side. After a few months, depression and quiet sadness preoccupied him although he was always willing to relieve others by reporting that he ‘felt a little better’ if they asked. He returned home in January after one of his many hospital stays and soon grew worse. Back in the hospital, he was told of possible treatment options to delay his death. He asked his family members what they wanted him to do and then announced that he wanted to go home. He was ready to die. He returned home. Sitting in his favorite chair and being fed his favorite food gave way to lying in the hospital bed in his room and rejecting all food. Eyes closed and no longer talking, he surprised everyone by joining in and singing “Happy birthday” to his wife, son, and daughter-in-law who all had birthdays close together. A pearl necklace he had purchased 2 months earlier in case he died before his wife’s birthday was retrieved and she told him how proud she would be as she wore it. He kissed her once and then again as she said goodbye. He died a few days later (Overstreet).

Except for a handful of illnesses in which death does often quickly follow diagnosis, or in the case of accidents or trauma, most deaths come after a lengthy period of chronic illness or frailty (Institute of Medicine (IOM), 2015). A dying process that allows an individual to make choices about treatment, to say goodbyes and to take care of final arrangements is what many people hope for. Such a death might be considered a “good death.” But of course, many deaths do not occur in this way. While modern medicine and better living conditions have led to a rise in life expectancy around the world, death will still be the inevitable final chapter of our lives.

Not all deaths include such a dialogue with family members or being able to die in familiar surroundings. People die suddenly and alone. People leave home and never return. Children precede parents in death; wives precede husbands, and the homeless are bereaved by strangers. In this chapter, we look at death and dying, grief and bereavement. We explore palliative care and hospice. And we explore funeral rites and the right to die.

Defining Death

Death is a physical event in which our bodies stop working, including the absence of breathing and a heartbeat. However, even this statement on describing death is overly simplistic. Our body is far more complex than this, composed of an intricate set of systems working together. These systems don’t all play an equal role in keeping us alive, but if something happens to one of them, it’s likely to affect the functioning of other systems and our body overall. For example, if our heart, lungs, and/or brain lose function, the other organs in our body may also start to fail. However, due to current medical science and advances, the failure of one organ does not guarantee that other systems of the body will inevitably and immediately lose functioning.

Medical professionals sometimes distinguish between clinical death, in which vital organs have stopped working but could be resuscitated, and biological death, in which these organs can’t be resuscitated (Parish et al., 2018). Depending on what caused the death, clinical death may occur before biological death. In cardiac arrest, for example, it may be possible to start the heart beating again. Or biological death may occur on its own: If a person is stabbed in the heart, the heart may sustain too much damage to be repaired.

But death isn’t just a physical event. It has psychological aspects, such as the way people cope with death, prepare and make decisions about end-of-life care, and express grief. Social aspects of death include the way dying people are treated and the cultural factors like religious and spiritual values and beliefs that affect people’s perceptions of dying and choices related to it. A researcher who studies the biological, psychological, and social aspects of death is called a thanatologist.

Aspects of Death (Ob 2)

One way to understand death and dying is to look more closely at physical death, psychological death, and social death. These deaths do not occur simultaneously. Rather, a person’s physiological, social, and psychic death can occur at different times (Pattison, 1977).

Physiological death occurs when the vital organs no longer function. The digestive and respiratory systems begin to shut down during the gradual process of dying. A dying person no longer wants to eat as digestion slows and the digestive tract loses moisture and chewing, swallowing, and elimination becomes painful processes. Circulation slows and mottling or the pooling of blood may be noticeable on the underside of the body appearing much like bruising. Breathing becomes more sporadic and shallower and may make a rattling sound as air travels through mucus filled passageways. The person often sleeps more and more and may talk less although continues to hear. The kinds of symptoms noted prior to death in patients under hospice care (care focused on helping patients die as comfortably as possible) are noted below. When a person no longer has brain activity, they are clinically dead. Physiological death may take 72 or fewer hours.

Social death begins much earlier than physiological death. Social death occurs when others begin to withdraw from someone who is terminally ill or has been diagnosed with a terminal illness. Those diagnosed with conditions such as AIDS or cancer may find that friends, family members, and even health care professionals begin to say less and visit less frequently. Meaningful discussions may be replaced with comments about the weather or other topics of light conversation. Doctors may spend less time with patients after their prognosis becomes poor. Why do others begin to withdraw? Friends and family members may feel that they do not know what to say or that they can offer no solutions to relieve suffering. They withdraw to protect themselves against feeling inadequate or from having to face the reality of death. Health professionals, trained to heal, may also feel inadequate and uncomfortable facing decline and death. A patient who is dying may be referred to as “circling the drain” meaning that they are approaching death. People in nursing homes may live as socially dead for years with no one visiting or calling. Social support is important for quality of life and those who experience social death are deprived of the benefits that come from loving interaction with others.

Psychic death occurs when the dying person begins to accept death and to withdraw from others and regress into the self. This can take place long before physiological death (or even social death if others are still supporting and visiting the dying person) and can even bring physiological death closer. People have some control over the timing of their death and can hold on until after important occasions or die quickly after having lost someone important to them. They can give up their will to live.

Death Process: For those individuals who are terminal and death is expected, a series of physical changes occur. Individual experiences may be influenced by such variables as the cause of death, the person’s general health, medications and other significant factors. All dying experiences are unique and influenced by many factors, such as the particular illness and the types of medications being taken, but there are some physical changes that are fairly common.

Bell (2010) identifies some of the major changes that occur in the weeks, days, and hours leading up to death:

Weeks Before Passing for death process

o Minimal appetite; prefer easily digested foods
o Increase in the need for sleep
o Increased weakness
o Incontinence of bladder and/or bowel
o Restlessness or disorientation
o Increased need for assistance with care

Days Before Passing for death process

o Decreased level of consciousness
o Pauses in breathing
o Decreased blood pressure
o Decreased urine volume and urine color darkens
o Murmuring to people others cannot see
o Reaching in air or picking at covers
o Need for assistance with all care

Days to Hours Before Passing for death process

o Decreased level of consciousness or comatose-like state
o Inability to swallow
o Pauses in breathing become longer
o Shallow breaths
o Weak or absent pulse
o Knees, feet, and/or hands becoming cool or cold
o Knees, feet, and/or hand discoloring to a purplish hue
o Noisy breathing due to relaxed throat muscles often called a “death rattle”
o Skin coloring becoming pale, waxen (pp. 5, 176-177)

Most Common Causes of Death (Ob1)

Like life expectancy, the most common causes of death differ by demographic variables. For example, men worldwide are more likely to die of accidents, murder, and suicide than women (WHO, 2019). Geographic location also plays a role, usually due to the resources and living conditions in an area. For example, in Angola, diarrheal disease (cholera, rotavirus) is the most common cause of death, likely due to lack of clean drinking water; however, in Canada, the leading cause of death is heart disease (Global Health Observatory, n.d.-a).

As of 2019, heart disease was the most common cause of death worldwide. It accounted for 9 million deaths recorded that year; stroke and COPD were second and third (WHO, 2020). However, the COVID-19 pandemic changed the statistics somewhat. The WHO estimates that the excess mortality attributable to COVID-19 was 3 million people in 2020. In other words, in 2020, COVID-19 caused 3 million more deaths worldwide than would have occurred without it (WHO, 2021). In the United States, COVID-19 replaced unintentional injury/accidents as the third most common cause of death in 2020 and 2021 (Xu et al., 2022), then dropped to fourth in 2022 (Ahmad et al., 2023).

Falls are another frequent cause of injury-related death among adults ages sixty-five and older, and the death rate from falls is increasing (CDC, 2024). The age-adjusted fall death rate increased by 41 percent from 2012 to 2021, from approximately 55 to nearly 80 fall-related deaths per 100,000 older adults (CDC, 2024).

Common causes of death also vary by age. In the United States, the most common cause of death for infants less than one year old is congenital abnormality (WISQARS, 2022). From ages 1 to 44, the most common cause is unintentional injury/accident. Even within that category, however, there are age-related differences. For children aged 1 to 4, the most common type of fatal unintentional injury is drowning, while from 5 to 24, it is motor vehicle accidents (CDC, n.d.). In many developing nations, infectious diseases and malnutrition are more commonly the causes of death, especially in children under five (Abubakari et al., 2019; Djoumessi, 2022; GBD 2019 Demographics Collaborators, 2020).

                                      Table. Top 3 Causes of Death in U.S. in 1900s and 1990s

Top 3 leading causes of death in the United States
1900’s	1990’s
Pneumonia & Influenza	Heart Disease
Tuberculosis	Cancer
Diarrhea & Enteritis	Stroke
30% of all deaths	60% of all deaths.

In the US in 2021, the top leading cause was heart disease, followed by cancer (CDC, 2021). COVID-19, newly added as a cause of death in 2020, became the 3rd leading cause of death. Unintentional injuries became the 4th leading cause in 2021 followed by stroke. Chronic lower respiratory diseases is the 6th, and Alzheimer disease is the 7th. Diabetes became the 8th, followed by pneumonia.  Then, kidney disease became the 10th leading cause in 2020. The 10 leading causes accounted for 74.1% of all deaths in the United States in 2020.

These were the top causes of death for various age groups in the United States in the year 2021 (CDC):

                                   Table. Top Causes of Death by Age Group in the U.S. in 2021

Age range	Top cause of death
< 1 year	Congenital anomalies (short gestation #2)
1 – 4 years	Unintentional Injury (congenital anomalies #2)
5 – 9 years	Unintentional Injury (Malignant Neoplasms (cancer) #2)
10 – 14 years	Unintentional Injury (suicide #2)
15 – 24 years	Unintentional Injury (homicide #2)
25 – 34 years	Unintentional Injury (suicide #2)
35 – 44 years	Unintentional Injury (COVID-19 #2)
45 – 54 years	COVID-19 (heart disease #2)
55 – 64 years	Malignant Neoplasms (cancer) (heart disease #2)
65 +	Heart Disease (Malignant Neoplasms (cancer) #2)

 

How might cause of death the way we think of death, how we grieve, and the amount of control a person has over his or her own dying process?

 

Table. Leading causes of deaths for persons 65 years of age and older (Note: pre-covid; CDC, 2001)

	American Asian	White	Black	Pacific Islander	Hispanic
1	Heart Disease	Heart Disease	Heart Disease	Heart Disease	Heart Disease
2	Cancer	Cancer	Cancer	Cancer	Cancer
3	Stroke	Stroke	Diabetes	Stroke	Stroke
4	COPD	Diabetes	Stroke	Pneu/Influenza	COPD
5	Pneu/Influenza	Pneu/Influenza	COPD	COPD	Pneu/Influenza

Deadliest Diseases Worldwide

In 2021, the top 10 causes of death accounted for 39 million deaths, or 57% of the total 68 million deaths worldwide (WHO, 2024). The top global causes of death, in order of total number of lives lost, are associated with two broad topics: cardiovascular (ischemic heart disease, stroke) and respiratory (COVID-19, chronic obstructive pulmonary disease, lower respiratory infections), with COVID-19 emerging as the second leading causes of death globally. Causes of death can be grouped into three categories: communicable (infectious and parasitic diseases and maternal, perinatal and nutritional conditions), noncommunicable (chronic) and injuries. At a global level, 7 of the 10 leading causes of deaths in 2021 were noncommunicable diseases, accounting for 38% of all deaths, or 68% of the top 10 causes.

1. Heart disease
2. COVID-19
3. Stroke
4. Chronic obstructive pulmonary disease
5. Lower respiratory infections
6. Trachea, Bronchus, and lung cancers
7. Alzheimer’s and other dementias
8. Diabetes mellitus
9. Kidney Diseases
10. Tuberculosis

Developmental Perceptions of Death

The concept of death changes as we develop from early childhood to late adulthood. Cognitive development, societal beliefs, familial responsibilities, and personal experiences all shape an individual’s view of death (Batts, 2004; Erber & Szuchman, 2015; National Cancer Institute, 2013).

Infancy: Certainly, infants do not comprehend death, however, they do react to the separation caused by death. Infants separated from their mothers may become sluggish and quiet, no longer smile or coo, sleepless, and develop physical symptoms such as weight loss.

Early Childhood: As you recall from Piaget’s preoperational stage of cognitive development, young children experience difficulty distinguishing reality from fantasy. It is therefore not surprising that young children lack an understanding of death. They do not see death as permanent, assume it is temporary or reversible, think the person is sleeping, and believe they can wish the person back to life. Additionally, they feel they may have caused death through their actions, such as misbehavior, words, and feelings.

Middle Childhood: Although children in middle childhood begin to understand the finality of death, up until the age of 9 they may still participate in magical thinking and believe that through their thoughts they can bring someone back to life. They also may think that they could have prevented the death in some way, and consequently feel guilty and responsible for the death.

Late Childhood: At this stage, children understand the finality of death and know that everyone will die, including themselves. However, they may also think people die because of some wrongdoing on the part of the deceased. They may develop fears of their parents dying and continue to feel guilty if a loved one dies.

Adolescence: Adolescents understand death as well as adults. With formal operational thinking, adolescents can now think abstractly about death, philosophize about it, and ponder their own lack of existence. Some adolescents become fascinated with death and reflect on their own funeral by fantasizing on how others will feel and react. Despite a preoccupation with thoughts of death, the personal fable of adolescence causes them to feel immune to death. Consequently, they often engage in risky behaviors, such as substance use, unsafe sexual behavior, and reckless driving thinking they are invincible.

Early Adulthood: In adulthood, there are differences in the level of fear and anxiety concerning death experienced by those in different age groups. For those in early adulthood, their overall lower rate of death is a significant factor in their lower rates of death anxiety. Individuals in early adulthood typically expect a long life ahead of them, and consequently do not think about, nor worry about death.

Middle Adulthood: Those in middle adulthood report more fear of death than those in either early or late adulthood. The caretaking responsibilities for those in middle adulthood is a significant factor in their fears. As mentioned previously, middle adults often aid with both their children and parents and they feel anxiety about leaving them to care for themselves.

Late Adulthood: Contrary to the belief that because they are so close to death, they must fear death, those in late adulthood have lower fears of death than other adults. Why would this occur? First, older adults have fewer caregiving responsibilities and are not worried about leaving family members on their own. They also have had more time to complete activities they had planned in their lives, and they realize that the future will not provide as many opportunities for them. Additionally, they have less anxiety because they have already experienced the death of loved ones and have become accustomed to the likelihood of death. It is not death itself that concerns those in late adulthood; rather, it is having control over how they die.

Psychological Aspects of Death

Death also has psychological aspects. The experience of death isn’t the same for everyone. Even when two people share the same cause of death, such as breast cancer, they may differ in the speed of progression, the pain they experience, and the kind and amount of support they have.

Being aware (or not) of impending death might affect a person’s self-concept, and how helpful that awareness is can vary person to person.

Being diagnosed with a terminal illness is likely to change a person’s self-perception (Aho, 2016; Greenberg et al., 1986; Kalish, 1968; Raju & Reddy, 2018; Zhang et al., 2023). When people are unable to care for themselves or participate in typical aspects of daily life, they may experience a loss of identity (Bryden, 2019; Fang et al., 2023; Gaignard & Hurst, 2019). This may also happen when people with dementia forget important memories or loved ones and lose a general sense of continuity in their lives (Blandin, 2016). In her 2019 account of living with dementia, biochemist Christine Bryden–diagnosed with early onset dementia at age forty-six—explained that her intellectual functioning was a key part of her identity and crucial to her career. She worried that her progressing illness was removing that aspect of herself, and that she would become her diagnosis, lose her individuality, and be seen as merely a dementia patient. A study of terminally ill brain cancer patients in India found such results: patients reported that others started to treat them as a sick person and not as an individual, whereas they wanted to be treated as they had been before getting sick (Raju & Reddy, 2018)

Death can be a difficult or awkward topic to discuss or even acknowledge. Psychologist Suzanne M. Miller (1995) proposed two relevant coping styles: monitoring, in which people seek out information about a problem even if it represents bad news, and blunting, in which people avoid potentially distressing information. These styles have implications for how much distress a person may feel when diagnosed with a terminal illness, and they may also influence how comfortable the person is discussing it with others (Pao & Mahoney, 2018).

But do people benefit from knowing they’re dying? Does this knowledge make them scared or prepared? Does it cause them to seek comfort or push others away? These questions don’t have simple answers. In general, thinking about death makes people anxious; however, this anxiety will prompt some people to prepare, while others will feel helpless and overwhelmed. Thinking about their own death also affects the way people interact with others, particularly people they view as different. When people feel that their sense of self is threatened, as when they’re worried about their own death, they try to preserve that sense of self by becoming more committed to cultural values and showing more outgroup bias, negative feelings about people perceived as different (Greenberg et al., 1986; Juhl & Routledge, 2016; Ma-Kellams & Blascovich, 2011; Rubin, 2018). The idea that people try to preserve their identity in the face of a threat of impending death is called terror management theory (Greenberg et al., 1986). However, not everyone reacts to this threat the same way. European-Americans are more likely to react with outgroup bias than are Asian Americans. The collectivist orientation of many Asian cultures may emphasize bonding with others during times of trouble (Ma-Kellams & Blascovich, 2011; Kwon & Park, 2022), although not all research supports this (e.g., Otsubo & Yamaguchi, 2023).

People who worry about what awaits them after death may also experience death anxiety. Nichols and colleagues’ (2018) cross-cultural study looked at the relationship between views of the self and fear of death among Christians, Hindus, and Tibetan Buddhist monks. Christians generally view the soul (self) as separate from the body, existing continuously throughout life and after death. Hindus similarly view the self’s existence as continuous, but believe it is reincarnated after death. These two perspectives may make people fear death if they’re concerned about what might happen to them in the afterlife. Indo-Tibetan Buddhism, on the other hand, takes the perspective that nothing is permanent, including the self; therefore, death isn’t something to fear.

Five Stages of Loss (Ob 3)

Kubler-Ross (1969, 1975) describes five stages of loss experienced by someone who faces the news of their impending death. These “stages” are not really stages that a person goes through in order or only once; nor are they stages that occur with the same intensity. Indeed, the process of death is influenced by a person’s life experiences, the timing of their death in relation to life events, the predictability of their death based on health or illness, their belief system, and their assessment of the quality of their own life. Nevertheless, these stages help us to understand and recognize some of what a dying person experiences psychologically. And by understanding, we are more equipped to support that person as they die.

Denial is often the first reaction to overwhelming, unimaginable news. Denial, or disbelief or shock, protects us by allowing such news to enter slowly and to give us time to come to grips with what is taking place. The person who receives positive test results for life-threatening conditions may question the results, seek second opinions, or may simply feel a sense of disbelief psychologically even though they know that the results are true.

Anger also provides us with protection in that being angry energizes us to fight against something and gives structure to a situation that may be thrusting us into the unknown. It is much easier to be angry than to be sad or in pain or depressed. It helps us to temporarily believe that we have a sense of control over our future and to feel that we have at least expressed our rage about how unfair life can be. Anger can be focused on a person, a health care provider, at God, or at the world in general. And it can be expressed over issues that have nothing to do with our death; consequently, being in this stage of loss is not always obvious.

Bargaining involves trying to think of what could be done to turn the situation around. Living better, devoting yourself to a cause, being a better friend, parent, or spouse, are all agreements one might willingly commit to if doing so would lengthen life. Asking to just live long enough to witness a family event or finish a task are examples of bargaining.

Depression is sadness and sadness is appropriate for such an event. Feeling the full weight of loss, crying, and losing interest in the outside world is an important part of the process of dying. This depression makes others feel very uncomfortable and family members may try to console their loved one. Sometimes hospice care may include the use of antidepressants to reduce depression during this stage.

Acceptance involves learning how to carry on and to incorporate this aspect of the life span into daily existence. Reaching acceptance does not in any way imply that people who are dying are happy about it or content with it. It means that they are facing it and continuing to make arrangements and to say what they wish to say to others. Some terminally ill people find that they live life more fully than ever before after they come to this stage.

There is no “right way” to experience the loss. People move through a variety of stages with different frequency and in various ways. It is important to note that Kübler-Ross’s work may not apply to everyone who is grieving. Her research focused only on those who were terminally ill. Friedman and James (2008) and Telford et al. (2006) expressed concern that mental health professionals, along with the general public, may assume that grief follows a set pattern, which may create more harm than good. Lastly, the Yale Bereavement Study, completed between January 2000 and January 2003, did not find support for Kübler-Ross’s five-stage theory of grief (Maciejewski et al., 2007). Results indicated that acceptance was the most commonly reported reaction from the start, and yearning was the most common negative feature for the first 2 years. The other variables, such as disbelief, depression, and anger, were typically absent or minimal.

Palliative Care and Hospice (Ob 4, Ob 6, Ob 7)

When individuals become ill, they need to make choices about the treatment they wish to receive. One’s age, type of illness, and personal beliefs about dying affect the type of treatment chosen (Bell, 2010).

Curative care is designed to overcome and cure disease and illness (Fox, 1997). Its aim is to promote complete recovery, not just to reduce symptoms or pain. An example of curative care would be chemotherapy. While curing illness and disease is an important goal of medicine, it is not its only goal. As a result, some have criticized the curative model as ignoring the other goals of medicine, including preventing illness, restoring functional capacity, relieving suffering, and caring for those who cannot be cured.

Palliative care focuses on providing comfort and relief from physical and emotional pain to patients throughout their illness even while being treated (NIH, 2007). Palliative care is an interdisciplinary approach to specialized medical and nursing care for people with life-limiting illnesses. Although it is an important part of end-of-life care, it is not limited to that stage. Palliative care is provided by a team of physicians, nurses, physiotherapists, occupational therapists, speech-language pathologists, and other health professionals who work together with the primary care physician and referred specialists to provide additional support to the patient. It focuses on providing relief from the symptoms, pain, physical stress, and mental stress at any stage of illness, with a goal of improving the quality of life for both the person and their family. Medical staff who specialize in palliative care have training tailored to helping patients and their family members cope with the reality of the impending death and make plans for what will happen after.

Palliative care is part of hospice programs. Hospice involves caring for dying patients by helping them be as free from pain as possible, providing them with assistance to complete wills and other arrangements for their survivors, giving them social support through the psychological stages of loss, and helping family members cope with the dying process, grief, and bereavement. In order to enter hospice, a patient must be diagnosed as terminally ill with an anticipated death within 6 months. Most hospice care does not include medical treatment of disease or resuscitation although some programs administer curative care as well. The patient is allowed to go through the dying process without invasive treatments. Family members, who have agreed to put their loved one on hospice, may become anxious when the patient begins to experience the death. They may believe that feeding or breathing tubes will sustain life and want to change their decision. Hospice workers try to inform the family of what to expect and reassure them that much of what they see is a normal part of the dying process.

                                                              Table. Elements of Hospice 

According to Shannon (2006), the basic elements of hospice include: Care of the patient and family as a single unit Pain and symptom management for the patient Having access to day and night care Coordination of all medical services Social work, counseling, and pastoral services Bereavement counseling for the family up to one year after the patient’s death

Today, there are more than 6,000 hospice programs and over 1,000 of them are offered through hospitals. In 2022, an estimated 1.72 million people received hospice care (NHPCO, 2024). The majority of patients on hospice are cancer patients and typically do not enter hospice until the last few weeks prior to death. The majority of patients on hospice are cancer patients who typically do not enter hospice until the last few weeks prior to death. The average length of stay is less than 25 days (National Center for Health Statistics, 2022). The median length of stay was 18 days, and one out of three patients were on hospice for less than a week. Although hospice care has become more widespread, these new programs are subjected to more rigorous insurance guidelines that dictate the types and amounts of medications used, length of stay, and types of patients who are eligible to receive hospice care (Weitz, 2007). Thus, more patients are being served, but providers have less control over the services they provide, and lengths of stay are more limited. Patients receive palliative care in hospitals and in their homes. When hospice is administered at home, family members may also be part, and sometimes the biggest part, of the care team. Certainly, being in familiar surroundings is preferable to dying in an unfamiliar place. But about 60 to 70% of people die in hospitals and another 16% die in institutions such as nursing homes (APA Online, 2001). Most hospice programs serve people over 65; few programs are available for terminally ill children (Wolfe et al., in Berger, 2005).

 

The Hospice Foundation of America notes that not all racial and ethnic groups feel the same way about hospice care. African-American families may believe that medical treatment should be pursued on behalf of an ill relative as long as possible and that only God can decide when a person dies. Chinese-American families may feel very uncomfortable discussing issues of death or being near the deceased family member’s body. The view that hospice care should always be used is not held by everyone and health care providers need to be sensitive to the wishes and beliefs of those they serve (Hospital Foundation of America, 2009).

Family Care

According to the 2023 Caregiving in America report, an estimated 53 million Americans are currently caregivers for someone who is dying or chronically ill. Two-thirds of these caregivers are women. This care takes its toll physically, emotionally, and financially. Family caregivers may face the physical challenges of lifting, dressing, feeding, bathing, and transporting a dying or ill family member. They may worry about whether they are performing all tasks safely and properly, as they receive little training or guidance. Such caregiving tasks may also interfere with their ability to take care of themselves and meet other family and workplace obligations. Financially, families may face high out of pocket expenses (IOM, 2015). , most family caregivers are employed, are providing care by themselves with little professional intervention, and there are high costs in lost productivity. As the prevalence of chronic disease rises, the need for family caregivers is growing. Unfortunately, the number of potential family caregivers is declining as the large baby boomer generation enters into late adulthood (Redfoot et al., 2013).

                                  Table. Characteristics of Family Caregivers in the United States

Characteristic
No home visits by health care professionals	69%
Caregivers are also employed	72%
Caregivers for the elderly	67%
% of employed workers who have been caregiving for 3+ years	55%

Adapted from IOM, 2015

End of Life Decisions

Advanced Directives

Advanced care planning refers to all documents that pertain to end-of-life care. These include advance directives and medical orders. Advance directives include documents that mention a healthcare agent and living wills. These are initiated by the patient. Living wills are written or video statements that outline the health care initiate the person wishes under certain circumstances. A durable power of attorney for healthcare names the person who should make healthcare decisions in the event that the patient is incapacitated. In contrast, medical orders are crafted by a medical professional on behalf of a seriously ill patient. Unlike advanced directives, as these are doctor’s orders, they must be followed by other medical personnel. Medical orders include Physician Orders for Life-sustaining Treatment (POLST), do-not-resuscitate, do not-incubate or do-not-hospitalize. In some instances, medical orders may be limited to the facility in which they were written. Several states have endorsed POLST so that they are applicable across healthcare settings (IOM, 2015).

Despite the fact that many Americans worry about the financial burden of end-of-life care, “more than one-quarter of all adults, including those aged 75 and older, have given little or no thought to their end-of-life wishes, and even fewer have captured those wishes in writing or through conversation” (IOM, 2015, p. 18).

Euthanasia (Ob 8)

Euthanasia, or helping a person fulfill their wish to die, can happen in two ways: voluntary euthanasia and physician-assisted suicide. Voluntary euthanasia refers to helping someone fulfill their wish to die by acting in such a way to help that person’s life end. Euthanasia can be by passive euthanasia such as no longer feeding someone or giving them food. While voluntary euthanasia involves administering the deadly drug for a patient upon their request, the practice of prescribing drugs that are self-administered is sometimes referred to as physician-assisted suicide.

Physician-assisted suicide involves active euthanasia and occurs when a physician prescribes the means by which a person can end his or her own life. Physician-assisted suicide is legal in six states in the U.S., Canada, the Netherlands, Luxembourg, Switzerland, and Belgium. The person seeking physician-assisted suicide for US states must be: (1) at least 18 years of age, (2) have six or less months until expected death, and (3) obtain two oral (or least 15 days apart) and one written request from a physician (ProCon.org, 2016). In 2014, Belgium allows the right to die to those under the age of 18. Stricter conditions were put in place for children, including parental consent, the child must be suffering from a serious and incurable disease, the child must understand what euthanasia means, and the child’s death must be expected in the near future (Narayan, 2016). Physician-assisted suicides, however, are rare. Since 1997 when the law was passed in Oregon, 1545 people had lethal prescriptions written and 991 patients had died from the medication by the end of 2015 (Oregon Public Health Division, 2016).

Table. Eleven States with Legal Physician-Assisted Suicide

State	Date Passed
Oregon	Passed 11/8/1994, but enacted 10/27/1997
Washington	11/4/2008
Montana	12/31/2009
Vermont	5/20/2013
California	10/5/2015
D.C.	10/5/2016
Colorado	11/8/2016
Hawaii	4/5/2018
New Jersey	3/25/2019
Maine	6/12/2019
New Mexico	4/8/2021

The practice of physician-assisted suicide is certainly controversial with religious, legal, ethical, and medical experts weighing in with opinions. The main areas where there is a disagreement between those who support physician-assisted suicide and those who do not include: (1) whether a person has the legal right to die, (2) whether active euthanasia would become a “slippery slope” and start a trend to legalize deaths for individuals who may be disabled or unable to give consent, (3) how to interpret the Hippocratic Oath and what it exactly means for physicians to do no harm, (4) whether the government should be involved in end-of-life decisions, and (5) specific religious restrictions against deliberately ending a life (ProCon.org, 2016). Not surprisingly, there are strong opinions on both sides of this topic.

Assisted suicide and euthanasia are being legalized in an increasing number of countries and in those places where the practice has been allowed, the number of people who die with assistance is rising. The number of people dying with assistance has been rising much faster in Canada over the past three years than in other countries where assisted suicide or euthanasia are legal. The Netherlands and Belgium which, like Canada, allow both have seen numbers rise more slowly. Assisted dying has been legal there since the early 2000s, however, Canada legalized it in 2015. In 2021, assisted dying accounted for 3.3 percent of all deaths in Canada. The United States also saw a somewhat faster rise in those dying by self-administered physician-assisted suicide over the past four years (euthanasia is not legal in the U.S.). This was also aided by the fact that four states – New Jersey, Hawaii, Maine and New Mexico – legalized it between 2018 and 2021, while two more populous ones, Colorado and California, started the practice in 2016. Switzerland is another practitioner of physician-assisted suicide, but not euthanasia. Assisted dying is also legal or will become so soon in Luxembourg, Colombia, Spain, Austria, New Zealand and most Australian states.

Cultural Differences in End-of-Life Decisions

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