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Chapter 3

Caregiving and Communication

While you may never have had to care for a loved one who is living with an illness, chances are that you will be a caregiver at some point in the future. Most young people do not think about the possibility of becoming a caregiver for someone who is ill. Caregiving is one of the most difficult yet rewarding processes one may experience during one’s lifetime. However, when faced with such a daunting prospect, most of us are not prepared for the relatively unknown caregiving challenges that lie ahead. Approximately 65.7 million Americans, or 29 percent of US adults, engage in informal care (National Alliance for Caregiving/American Association for Retired Persons [NAC/AARP], 2009). Of these, five to seven million provide care from a distance, a figure that is expected to double within 15 years (Benefield & Beck, 2007).

According to the National Family Caregivers Association (2005), there are more than 50 million caregivers in the US. These individuals are family members and friends who do not receive payment for the assistance they provide their loved ones. The number of lay caregivers in the US is expected to increase within the next several decades due to factors such as an average increased life span, a growing segment of older adults, and advances in medical technology that can prolong the lives of people with a long-term illness (Stoltz, Uden, & Willman, 2004). It is worth noting, that family caregiving is unpaid, can continue for a lengthy time period, be a nearly constant time commitment (Baillie, 2007), and be a passive decision if the caregiver believes there is no one else or no other alternative (Brereton & Nolan, 2000). As Bevan and Sparks (2010) point out, caregiving experiences are often transitional times for families who must communicatively and behaviorally adapt as they adjust in ways that enable them to manage stressful family changes and emerge resilient and emotionally intact. The ability to communicate competently is thus particularly crucial in the context of distance family caregiving, as research indicates a link among family communication, health, and adjustment to diseases such as cancer (Helgeson & Cohen, 1999).

Mark Twain once said, “The difference between the right word and the almost right word is the difference between the lightning and the lightning bug.” Communication is a central component to a successful and effective caregiving experience for the patient, who will encounter many formal and informal caregivers and medical professionals at any given time from the onset of illness to either recovery or, for many, the process of dying. Unfortunately, most people in our culture do not feel comfortable talking about caregiving and the dying process. As a result, many find themselves unprepared to deal with these issues when they are faced with caring for someone or coping with the death of a loved one. Caring for a loved one who is facing a long-term illness and coping with the process of dying are difficult aspects of life, and the discussion of death and dying is a taboo topic in our culture. Younger individuals often feel that caring for a loved one is something that they will not have to deal with for many years to come. Unfortunately, researchers have found that lay caregivers are often unprepared to deal with the many challenges of caregiving, and they often find it difficult to cope with the demands of providing care for family members and other loved ones (Andrews, 2001; Sarna & McCorkle, 1996).

Researchers have found that the US healthcare system often provides inadequate care for the dying (Field & Cassel, 1997; Foley & Gelband, 2001), and dying individuals frequently experience underdiagnosis and undertreatment for pain and psychosocial concerns (Bernabei et al., 1998; Martin, Emanuel, & Singer, 2000; Reb, 2003). In addition, dying individuals are not always treated with respect, they experience communication problems with providers, and their family members often do not receive adequate social support during the dying process (Lawton, 2000). In the US and other countries, end-of-life care is typically provided by doctors and nurses who have limited training in caring for the dying (Barclay et al., 2003; Rhymes, 1990). Researchers have suggested that we need to learn how to communicate more effectively about these issues and take measures as a society to reform this important aspect of health (e.g. Sparks, 2003; Travis, Sparks-Bethea, & Winn, 2000). This chapter explores communication issues surrounding the caregiving process, end-of-life care, and the dying process.

Caregiving

Characteristics of People Requiring Long-Term Care and Caregivers

A caregiver is defined as “anybody who provides unpaid help, or arranges for help, to a relative or friend because they have an illness or disability” (Donelan et al., 1998, p. 243). As we mentioned earlier, a growing number of people are becoming caregivers in our society (Sparks, Travis, & Thompson, 2005; Travis & Sparks-Bethea, 2001; Travis, Sparks-Bethea, & Winn, 2000). Many of these individuals, such as middle-aged adults, find themselves simultaneously supporting both their children and parents, a phenomenon known as the “sandwich generation” (Richards, Bengston, & Miller, 1989; Williams & Nussbaum, 2001). Caregiving is a potential public health issue that will challenge society with caregivers who themselves suffer from various medical conditions (Talley & Crews, 2007). Caregiving is correlated with negative caregiver health with 17 percent of US caregivers reporting fair or poor health, compared with 13 percent of the general adult population (NAC/AARP, 2009). As the length of the human life span increases individuals are living longer, and with advances in medicine it is now possible for people with a variety of long-term illnesses to live with their condition for many years. However, despite the ability of medical advances to prolong life, terminally ill people often experience pain and discomfort from the symptoms of their illness, psychological distress from living with their illness and coping with their own mortality, and conditions that may limit their mobility or make them incapable of living on their own.

Getting older does not necessarily mean being unhealthy or requiring care from loved ones. Only about 5 percent of older Americans currently experience institutional long-term care, but this number is projected to grow in the next several decades with the aging of the baby boomer age cohort (Blevins & Deason-Howell, 2002). Most older individuals are healthy, although people over the age of 65 represent the majority of deaths in the US (Blevins & Deason-Howell, 2002). The majority of dependent older adults in the US who require long-term assistance currently receive care from family members (Sparks-Bethea, 2002), and the number of couples in their middle years who will have to care for their parents is expected to increase over the next decade (Moody, 1994).

While most people tend to equate long-term illness with older adults, it is important to remember that a person requiring long-term care may be of any age. Diseases, such as certain types of cancer, affect people of all ages (although older adults tend to be at higher risk for most types of cancer), and other diseases that can create the need for long-term care, such as HIV and AIDS, are more likely to affect younger individuals. The majority of individuals who are dying of long-term illnesses today have conditions such as cardiovascular disease, cancer, and cerebrovascular disease (Centers for Disease Control and Prevention, 2004).

Relatively few people in our society have the financial means to afford a professional caregiver for their loved ones, so they take on the responsibility themselves. As caregivers, marital partners and family members may have to spend an enormous amount of time meeting the physical needs of a parent, and most people do not have the experience, skills, or training that are necessary to handle the immense responsibility of caregiving. Research indicates that as the older adult population continues to expand, extended comprehensive care often becomes the responsibility of the aging adult’s family (Miller, Shoemaker, Willyard, & Addison, 2008). Adult children and women are much more likely than men to become caregivers in our society (Fowler & Fisher, 2009; Wolff & Kasper, 2006) because of factors such as women having a longer life span than men and the tendency for men to marry younger women. In addition, women are often stereotyped as more nurturing than men, and these perceptions shape societal expectations that women are better suited as caregivers than men. Unfortunately, these conditions and expectations have led to a situation where women have had to bear the brunt of caregiver responsibilities in our society, and many individuals are largely unprepared for taking on the role of caregiver (Fowler & Fisher, 2009). Many of these female caregivers are older women living on fixed incomes and who may have limited financial and social resources (Williams & Nussbaum, 2001). Further, intergenerational barriers such as stereotyping, memory, and language issues often present multiple communication problems for older adults, which can create conflict and hinder effective healthcare (Sparks & Nussbaum, 2008).

Distance Caregiving

Long-distance caregiving is defined by Bevan and Sparks (2011) as individuals who perceive themselves as being geographically distant in a caregiving situation. Long-distance caregiving is becoming more and more common in the US (Bevan & Sparks, 2011) impacting information quality, uncertainty, and quality of care (Bevan, Jupin & Sparks, 2011), increasing topic avoidance and negative health perceptions (Bevan, Rogers, Andrews, & Sparks, in press), as well as increasing interpersonal conflict and health perception, especially in distant caregiving contexts (Bevan, Vreeburg, Verdugo, & Sparks, 2012). As family residential distance increases (e.g. Zechner, 2008), stress is often placed on individuals who provide distant care to an aging adult (Bevan, Vreeburg, Verdugo, & Sparks, in press). Research shows that distance often presents an additional caregiving burden (Kelsey & Laditka, 2009; Mitnick, Leffler, & Hood, 2010). The American College of Physicians recently recommended that doctors “recognize that geographically distant caregivers may face unique challenges” in their ethical guidelines for caregivers (Mitnick, Leffler, & Hood, 2010, p. 257). Further, the various ways by which geographic distance is linked with emotional support is also a relevant aspect of interpersonal and health communication, as it involves messages that are intended to assist another to cope with emotional distress (Burleson, 2003). Research indicates that some distant family caregivers’ primary responsibility was providing emotional support (Roff et al., 2007). For sibling caregivers of those with traumatic brain injury, affective support including elements of providing encouragement, general support, and companionship, and finding time to check in on the care recipient, was unrelated to geographic distance (Degeneffe & Burcham, 2008). In addition, expected future provision of emotional support did not differ by geographic distance in adult child–parent care­giving (Baldassar & Baldock, 2000; Baldassar, Wilding, & Baldock, 2007).

Bevan et al. (2012) investigated conflict frequency and strategy usage in relation to negative health perceptions in the long-distance caregiving context. Their results indicate that conflict frequency and usage of both distributive and avoidant conflict strategies positively predicted distant caregivers’ negative health perceptions. However, collaboration and compromise were not associated with negative health perceptions in the long-distance caregiving environment. Further, Koerner, Shirai, and Kenyon (2010) determined that the more frequent family conflict about care provision, the greater caregivers’ experience of physical health symptoms. In addition, lower family relationship quality, including conflict, was linked to increased caregiver health difficulties (Francis, Worthington, Kypriotakis, & Rose, 2010). Although a relatively under-researched area, long-distance caregiving is increasingly becoming a significant public health issue, which should be more thoroughly investigated to better understand the repercussions it has on care providers, care recipients, and the overall healthcare system (Bevan & Sparks, 2011).

Caregiver Roles

Caregivers play a vital role in meeting patient needs (Andrews, 2001; Meyers & Gray, 2001; Siegel, Raveis, Houts, & More, 1991; Weitzner, McMillan, & Jacobson, 1999), and they often deal with a variety of communication-related issues that have important implications for the physical and psychological well-being of patients and for the caregivers themselves. According to Allen, Haley, Small, and McMillan (2002), “prior research suggests that the quality of communication among terminally ill individuals, their caregivers, and hospice staff influences patient and caregiver outcomes” (p. 508). Although researchers have identified communication as an important part of the process of providing care (Bakas, Lewis, & Parsons, 2001; Martinez, 1996; Zamborsky, 1996), few studies have actually examined how specific communication variables are related to health outcomes of people with long-term illnesses.

Some of the many responsibilities caregivers must contend with include: (i) providing physical assistance and emotional support to the patient; (ii) being a liaison between the patient and an interdisciplinary team of providers; (iii) handling financial and social affairs for the patient; and (iv) monitoring symptoms and communicating them to providers. These tasks present numerous communicative challenges for caregivers of people with cancer enrolled in hospice programs, and we will examine these in greater detail below.

As we have seen, most primary caregivers for people facing illnesses are family members who are ill-equipped to deal with the physical and emotional stress of care­giving duties (Andrews, 2001; Rusinak & Murphy, 1995; Sarna & McCorkle, 1996). While trained health workers (such as hospice workers, who we will discuss later) provide support in terms of administering medical care and attending to a variety of the patient’s physical needs, family caregivers must handle a variety of tasks, including providing emotional support, providing transportation, managing finances, monitoring symptoms, coordinating schedules, coping with increased housework, and running errands, and caregiver burden has been found to increase as patients enter into later stages of the disease (Andrews, 2001; Laizner, Yost, Barg, & McCorkle, 1993). These activities, coupled with the stress of coming to terms with the imminent death of a loved one, can lead to physical and emotional exhaustion for the caregiver. Moreover, caregiver burden has been linked to poorer care in the home, increased risk for institutionalization for the loved one who is being cared for, increased levels of depression, and increases in stress-related diseases for the caregiver (Haley et al., 2003; Skirton & Glendinning, 1997; Turner, Killian, & Cain, 2004).

Caregivers’ communication with their social network and providers can have a positive impact on their stress levels, particularly when they are able to use their communication skills to obtain assistance and emotional support. In addition, many caregivers have found the use of humor to be an effective way of coping with the complexities of caregiving as it often provides relief from the stresses involved in the caregiving process (Harzold & Sparks, 2007; Sparks et al., 2005; Sparks-Bethea, Travis, & Pecchioni, 2000). Further, Harzold and Sparks’ (2007) finding that a parent’s withholding of cancer information from an adult child is dissatisfying also implies that topic avoidance often emerges as a problem in the caregiving relationship. In terms of adult siblings, Willyard et al. (2008) found that, though siblings used avoidance to deal with negotiating who would participate in their parent’s care, caregivers also perceived that siblings did little or nothing to assist with caring for parents. The stresses involved in caregiving bring about a host of difficulties in communication such as topic avoidance and conflict in the relationship, which are often exacerbated when the caregivers must carry out their role from a distance (Bevan & Sparks, 2011).

Unfortunately, caregivers often lack the diverse communication skills necessary to effectively meet the needs of the patient and their own needs (Andrews, 2001; Bakas, Lewis, & Parsons, 2001). One variable that may influence a caregiver’s ability to use communication to mobilize support from his or her social network is communication competence. Communication competence refers to the ability to construct and use appropriate and effective messages to meet goals/needs and to successfully create and maintain satisfying relationships (Wiemann, 1977). Query and Wright (2003) found that both older adults with cancer and their caregivers with higher communication competence had lower perceived stress levels and higher satisfaction with their support networks than individuals with lower communication competence.

Caregiving and Changes in Relationships

Communication between family members may exhibit a number of changes when they take on caregiver roles (Richards, 2004; Sparks-Bethea, 2002; Williams & Nussbaum, 2001). Marital satisfaction can be damaged by the financial cost of providing for children and parents, as well as the emotional costs associated with the caregiving relationship. Married couples caring for a parent who report lower marital satisfaction state that the presence of a parent in the home reduces the amount of overall communication time within the marital dyad, the amount of private time between the couple, and increases certain types of communication between the couple, such as decision-making. These changes in communication appear to affect even long-term marriages, since partners have been found to experience declines in marital satisfaction when they are caring for an aging parent (Sparks-Bethea, 2002).

It is also important for caregivers to understand that patients often experience dramatic shifts in their identities as they move through the stages of being healthy and well to being sick. Identification as someone who was previously healthy shifting to someone who is sick, identification as a patient, and identification as a survivor are all important aspects to consider. Whether we experience a difficult health issue such as cancer through a friend, family member, or personal experience, it is our various relationships and/or conversations about the health experience across the continuum of care from prevention, diagnosis, treatment, survivorship to end of life that continually reinforce, renegotiate, and bring about shifts in our social identities across the life span (Sparks & Harwood, 2008). Another issue here is that particular conceptualizations of self within the health condition(s) have the capacity to change psychological orientation and behaviors related to one’s health, and hence to influence concrete outcomes (see, e.g. Harwood & Sparks, 2003; Sparks & Harwood, 2008). For example, cancer patients concerned about the stigma associated with a cancer diagnosis may pursue numerous strategies to avoid such stigma while they are fighting the disease. Such shifts in a patient’s social identity may greatly impact the way the patient and the various caregivers involved relate to the patient.

As Harwood and Sparks (2003) further point out, family identity may be crucial among those who have family histories of particular health issues (e.g. cancer or heart disease). Women in a family with a history of breast cancer, for instance, are in a situation where information and awareness about the disease should be heightened, preventive measures should be relatively automatic, and knowledge about treatment options in the case of illness should be readily available (Harwood & Sparks, 2003; Pecchioni & Sparks, 2007). However, the extent to which those women identify with the family may be crucial. People who are less involved and identified with their family may dissociate from the medical history and perhaps perceive themselves as less vulnerable (Harwood & Sparks, 2003; Sparks & Harwood, 2008).

Shifts in one’s social identity(ies) from one who is healthy (belonging to group memberships reinforcing this) to one who is not healthy (introduced to new group memberships not previously experienced) is an important component for formal and informal caregivers to consider when communicating with patients. By understanding the complexities involved in patients who were previously vital and energetic, full of life, and so on, but who now exhibit characteristics not demonstrating these strong dimensions, caregivers can use more appropriate, effective, and understanding communication strategies in relating to patients and their strong identity orientations and subsequent shifts in identity.

Communication Issues Surrounding Symptom Management

Researchers have found that caregivers and people with a long-term illness mutually influence one another during interactions in ways that can affect both parties psychologically and physically. For example, several researchers have found a relationship between patient symptom distress and caregiver depression and/or perceptions of caregiver burden (Andrews, 2001; Given et al., 1997; Sarna & Brecht, 1997). Increased patient symptom distress can increase the number of tasks in a caregiver’s daily schedule as well as add to his or her stress level. People with cancer may experience a number of symptoms associated with the disease and its treatment, including pain (Allen et al., 2002; Donnelly, Walsh, & Rybicki, 1994), fatigue, and dyspnea (Nail, 2002). According to Bakas, Lewis, & Parsons (2001), “family caregivers must be able to not only recognize these symptoms, but also assist patients in managing them” (p. 849).

The need to alleviate pain is a common aspect of caring for individuals with a terminal illness (Brescia et al., 1992). Adequate pain relief among terminally ill patients has been found to be a significant problem across studies (Foley & Gelband, 2001; MacMillan & Small, 2002), and many of the problems related to pain control are associated with communication problems experienced by the patient or between the patient and caregiver (Panke, 2002). Pain is a multifaceted concept and it is experienced differently by different people. For example, people vary in terms of their tolerance of pain and they may react to pain in a variety of ways. Different experiences and perceptions of pain make it difficult for people with cancer and caregivers to assess the degree to which people are in pain and how pain should be treated. Most studies have concluded that self-reports of pain are the most reliable indicator of the pain a terminally ill patient is experiencing, but according to Allen et al. (2002), “the presence of cognitive and sensory deficits, however, may hamper an individual’s ability to communicate painful experiences” (p. 508).

In situations where a patient cannot communicate the amount of pain they are experiencing due to their illness, caregivers run the risk of under-medicating or over-medicating their loved ones. According to Panke (2002), “patients who aren’t able to communicate verbally are at risk for underassessment and inadequate pain relief, those at highest risk being patients with cognitive impairment, intubated patients, infants, and patients older than 85” (p. 28). Family caregivers are important sources of information about patient behaviors, and they are often crucial in communicating information about pain to providers (Pecchioni & Sparks, 2007). Family caregivers commonly typically act as liaisons between patients and providers in terms of reporting pain, but family caregivers may have difficulty accurately assessing the actual amount of pain their loved one is experiencing (Allen et al., 2002; Elliot et al., 1997), and this can lead to a situation where a patient remains in pain due to under-medication but cannot do anything about it.

In cases where people with an illness cannot verbally communicate with their caregivers, a caregiver must rely on nonverbal signs of pain, such as facial expressions and body movements. Nonverbal and behavioral cues indicating pain are often used by caregivers as a sign of whether to increase pain medications. However, it can be difficult for caregivers to “recognize that a particular behavior indicates pain, especially if they are unfamiliar with how the patient usually behaves” (Panke, 2002, p. 28). Effective assessment of pain is important in order to control it, and information about pain needs to be effectively communicated to providers in order to achieve a balance between adequate pain control and over- or under-medication (Panke, 2002; Travis & Sparks-Bethea, 2001; Travis, Sparks-Bethea, & Winn, 2000). Over-medicating a patient can lead to numerous problems, such as the accumulation of toxins associated with pain medications, renal dysfunction, decreased cognitive functioning, and organ failure. Under-medication can lead to inadequate pain control and unnecessary suffering for the patient.

Even in cases where verbal communication between caregivers and patients is possible, patients often remain silent when it comes to making their needs known to the caregiver due to reluctance to talk about terminal illness openly and/or the desire of the person receiving care not to burden the caregiver (Bachner & Carmel, 2009; Zhang & Siminoff, 2003). In some cases, this lack of talk about patient needs may delay recognition and treatment of pain and other symptoms that can even be life-threatening (Hinds, 1992). Studies have found higher levels of psychological and physical problems in families where people are not able to openly discuss terminal illness (Mesters et al., 1997). In situations where there is open communication about death and dying, researchers have found that there are lower levels of feelings that the loved one is a burden among caregivers (Fried, Bradley, O’Leary, & Byers, 2005) and greater emotional acceptance of death (Lepore & Hegelson, 1998).

Communication Challenges Associated with Caregiving

Willingness to Communicate Concerns 

Many family caregivers are reluctant to communicate problems they encounter during the caregiving process to the people they are caring for or to others within their social network because they do not want to burden them with the added stress of thinking about these concerns (Bakas, Lewis, & Parsons, 2001; Laizner et al., 1993). This is consistent with other research that has found that family member caregivers often avoid communicating about their problems with others because they do not want to overstep interpersonal boundaries or add stress to the lives of others by raising concerns about caregiving (Chesler & Barbarin, 1984).

However, by not communicating their concerns to others, caregivers do not give themselves the opportunity to vent their frustrations or to receive advice or other offers of assistance from their social network. Caregivers may experience added stress when they do not have the opportunity to express their concerns, and this can lead to depression, burnout, anxiety, social withdrawal, and reduced quality of life (Bakas, Lewis, & Parsons, 2001; Given et al., 1993). In addition, the reluctance of caregivers to communicate their needs and concerns may also affect their ability to provide care (Bakas, Lewis, & Parsons, 2001).

Communication of Emotional Support 

Researchers have found that the provision of emotional support is one of the most time-consuming and challenging aspects of caregiving, often requiring more of a caregiver’s time and effort than other daily caregiving tasks (Bakas, Lewis, & Parsons, 2001; Egbert & Parrott, 2003; Toseland, Blanchard, & McCallion, 1995). This has been found to be true for both lay and professional caregivers (Travis & Sparks-Bethea, 2001; Travis, Sparks-Bethea, & Winn, 2000). According to Andrews (2001), “because the caregiver is the center of support for the needs of the patient with cancer, if the caregiver fails, the patient suffers” (p. 1469). Given the uncertainty and fear associated with coming to terms with one’s own mortality among people with diseases like cancer, it is not surprising that emotional support is a common need among terminally ill patients and other patients requiring long-term care. Listening to patient concerns and providing empathetic responses to patients is an important aspect of providing holistic hospice care. However, it can be very time consuming for caregivers (professional and lay), especially when faced with accomplishing multiple tasks when providing daily care to patients. Patient irritability, confusion, and aggressive behaviors during late-stage cancer may make it even more difficult and exhausting for caregivers to provide emotional support. Moreover, both professional and lay caregivers often have little training regarding the provision of emotional support, and there is a need for education and training about how to deal with these issues and effectively provide emotional support (Bakas, Lewis, & Parsons, 2001).

Hospice and Palliative Care

Over the past two decades, hospice and palliative care have become popular options for people facing terminal illness and their loved ones. It is the desire of most patients with serious, incurable diseases to die at home. Dying at home is associated with greater satisfaction by bereaved family members (Ratner, Norlander, & McSteen, 2001). Lynn (2001) described the importance of dying with dignity: “most people want more than just longer life; they want the end of life to be meaningful, comfortable, and supportive to loved ones” (p. 926). According to the National Hospice and Palliative Care Organization (NHPCO, 2006), over 400 000 hospice volunteers offer services and support to dying people and their caregivers in the US. Over 1.3 million patients and families utilize hospice services in the US (NHPCO, 2007). This section will explore the growth and impact of hospice and palliative care and a variety of communication issues associated with them.

History of Hospice and Palliative Care

The term hospice refers to programs that provide support and care for people in the last phases of an incurable disease, with a focus on maintaining the quality of their remaining life by providing services that both aid physical comfort and address psychological and spiritual needs (NHPCO, 2004). While hospice began as an alternative health movement, the goals of hospice care—to provide a dignified, comfortable death for the terminally ill and to care for the patient and family together—are being given increasing recognition in mainstream medical care (Query, Wright, & Gilchrist, 2006).

The hospice movement originated in England and was largely influenced by the work of Dame Cicely Saunders, an English nurse who promoted the idea that a patient’s care should be managed by an interdisciplinary team, that pain and symptom management should be a primary goal of hospice nursing, and that death education and bereavement counseling for family members should be included in hospice care (NHPCO, 2004). Saunders, who originally studied to be a nurse, was motivated by the pain and loneliness of the dying to become a physician. In 1957, she began her first job as a physician investigating terminal pain and its relief. As a result of her ideas, in 1967 St. Christopher’s Hospice was opened in Sydenham, London (Howarth & Leaman, 2001). Saunders continued to work full-time as St. Christopher’s chair well into the 1980s (Moore, 1998). In addition, hospice programs were influenced by the work of Elizabeth Kubler-Ross, a psychiatrist who brought attention to the taboo topic of death in our culture, and who promoted the idea that the focus of medicine for people facing incurable diseases should be to control pain and symptoms, and to promote quality of remaining life (Query, Wright, & Gilchrist , 2006).

In 1974, hospice arrived in the US with the opening of Hospice Inc. in Connecticut. Since that time, we have witnessed the rapid growth of hospice organizations in the US. In 1983, Medicare began offering a hospice option to Medicare Part A insurance to reimburse terminally ill patients who meet certain criteria, and the number of US hospices grew from 516 in 1983 to over 1000 today (Query, Wright, & Gilchrist, 2006). More than 90 percent of hospice care is provided in patients’ homes and 78 percent of hospice care is for cancer patients (Moore, 1998).

Hospice Services and Care

When a candidate for a hospice program is identified, hospice staff members generally hold an initial meeting with the patient’s primary physician(s) and a hospice physician to discuss the patient’s history, physical symptoms, and life expectancy. Following this initial meeting, hospice staff members meet with both the patient and his or her family to discuss the hospice philosophy, available services, and expectations. In addition, staff and patients discuss pain and comfort levels, support systems, financial and insurance resources, medications, and equipment needs. A plan of care is then developed for the patient, and this plan is regularly reviewed and revised according to the patient’s condition.

Most hospice care takes place in the patient’s home, although more and more in-patient hospice facilities are becoming available. In-patient hospice facilities are helpful for patients who do not have family members or other loved ones to care for them. In home settings, hospice staff members do not usually serve as primary caregivers for a patient enrolled in a hospice program. A family member is typically the primary caregiver and he or she often helps make decisions for the terminally ill individual (Sparks et al., 2005; Sparks, 2008). Members of the hospice staff support the family caregiver by making regular visits to assess the patient and provide additional care or other services. Hospice staff are usually on-call 24 hours a day, seven days a week.

The hospice physician and/or nurses are usually responsible for making decisions about increases and decreases in pain medication and the treatment of other physical symptoms, although pain and symptoms are usually monitored on a daily basis by the family caregiver (Travis & Sparks-Bethea, 2001; Travis, Sparks-Bethea, & Winn, 2000). Hospice staff members provide family caregivers with training in pain and symptom monitoring as well as a host of other caregiver tasks, and the hospice program provides all medications and supplies needed to care for the patient (NHPCO, 2004). Home care hospice programs sometimes make short-term in-patient care available (usually through an affiliated hospital) when pain or symptoms become too difficult for the family caregiver to manage at home, or the caregiver needs respite time (time to cope with the physical and emotional strain of caregiving). The hospice team also assists the patient with the emotional, psychosocial, and spiritual aspects of dying. Following the death of a hospice patient, bereavement services and counseling are typically available to loved ones for a year (Hospice Foundation of America, n.d.).

Barriers to Hospice Care

Despite the increased number of hospice organizations in the past 15 years, there are many barriers that may inhibit their growth. In the late 1990s, fewer than 50 percent of patients with terminal illness received the benefit of hospice care (Emanuel & Emanuel, 1998), and the situation has not improved much in recent years. Even among individuals who are admitted to hospice programs, many problems exist that may hinder the quality of care patients receive, such as the lack of continuity of care between hospice team members, the inability of hospice staff to meet the emotional and spiritual needs of patients, and the lack of adequate training among healthcare professionals in taking care of those who are dying (Egbert & Parrott, 2003; Gloth, 1998; Ragan & Goldsmith, 2008). There is currently no mandatory nationwide accreditation for hospice organizations. Many programs are accredited by the Joint Commission on Accreditation of Healthcare Organizations (JCAHO) or by the Community Health Accreditation Program (CHAP).

One reason for the relatively low number of people entering into hospices is the hospice eligibility requirements for Medicare patients (which reimburses older patients and their families for hospice services) that require physicians to certify potential hospice patients have six months or less to live (Foley & Gelband, 2001; Reb, 2003). According to Reb (2003), many hospices are reluctant to accept patients whose conditions might improve over time. Doctors are often reluctant to certify that a person only has six months or less to live because it can be extremely difficult to estimate how long a person will live when he or she has certain types of diseases, such as heart disease or dementia (Zerzan, Stearns, & Hanson, 2000). Complicating this matter are the continuous advances that are being made in medicine that can prolong the lives of individuals with a “terminal” illness. For example, a diagnosis of HIV was once thought to be 100 percent fatal to a patient, but new HIV medications have made it possible for HIV-positive individuals to live for many years. Similar advances (although not always as promising) are being made with Alzheimer’s disease and a variety of other diseases and conditions.

In addition, providers may be reluctant to refer individuals to hospice programs because current healthcare insurance options do not provide many financial incentives for doing so (Reb, 2003). Also, according to Walsh and Gordon (2001), physicians are also hesitant to refer people to hospice programs because they fear punitive damages from insurance company oversight committees and organizations such as the Centers for Medicare and Medicaid. In recent years, these organizations have targeted physicians who referred patients to hospice programs who ended up living longer than six months in an effort to investigate insurance fraud. Walsh and Gordon (2001) contend that because of these investigations, physicians may be more conservative when estimating the survival times of patients and cautious about referring people to hospice programs.

Most insurance plans to not adequately cover services needed for quality end-of-life care (Raphael, Ahrens, & Fowler, 2001). Outside of hospice organizations, there are few ways that people can be reimbursed for these types of services. One of the reasons that insurance plans are reluctant to cover end-of-life care is the fact that some diseases, such as cancer, progress to late stages where people experience multiple physical symptoms that can be expensive to treat. Most insurance plans currently do not recognize or provide only limited reimbursement for services that meet the psychosocial needs of patients, such as patient counseling, counseling for family members, or other services that do not deal with physical health (Reb, 2003).

The result of these factors is that most individuals who are referred to hospice programs often do not live long enough to reap the benefits that these programs provide. Thirty percent of hospice patients on Medicare die within one week of admission, and hospice care providers often label this “brink of death” care, as compared to genuine end-of-life care (Nicoll, 2002). Such services are also described as “drive-by hospice care” as hospice team members often move from one patient to the next, rushing to complete visits, documentation, and follow-up only to learn of the death of the patient the next morning, before “care” could be provided (see Nicoll, 2002). One week or less of hospice care does not give hospice staff sufficient time to meet the various physical, psychological, spiritual, and social needs of patients and their families.

There are other barriers to the hospice movement as well. Many physicians and nurses have not been trained in caring for the terminally ill and most feel uncomfortable doing so (Block & Sullivan, 1998; Rhymes, 1990). Also, hospice staff members often have difficulty communicating with other members of the hospice team because hospice teams tend to be interdisciplinary, and members often have limited knowledge of each member’s area of expertise (Coopman, 2001; Street & Blackford, 2001). In addition, studies have found that individuals with lower socioeconomic status are less likely to be referred to hospice programs (Grande, McKerral, & Todd, 2002), and Karim, Bailey, and Tunna (2000) found that black/minority ethnic populations are referred to hospice less often than white populations. There are cultural barriers to hospice as well, and despite the inclusion of psychosocial concerns, most hospice organizations have largely adopted a mainstream western perspective of healthcare. Poulson (1998) identified several salient cultural issues to be considered during end-of-life care, including the possible need for translators, varying religious traditions, differing communication patterns, diverse social customs, familial hierarchies, and death rituals.

Additionally, although one of the goals of the hospice movement is to provide end-of-life care to patients at home rather than in hospitals, the majority of individuals in the US still die in hospitals and nursing homes (von Gunten, 2002). Each of these barriers seriously undermines the original goals and ideals of the hospice movement, and they will need to be reexamined in order for the hospice movement to thrive in the future.

Palliative Care

Palliative care refers to the comprehensive care of terminally ill individuals and their family members using an interdisciplinary approach. The term palliation refers to any treatment, care, or support that relieves symptoms and suffering (Query, Wright, & Gilchrist, 2006). This is in contrast to curative care, which has the primary goal of curing disease and prolonging life. In terms of comprehensive care, palliative care includes pain and symptom relief, attention to psychological and spiritual aspects of dying, and involving a patient’s family and other support network members in the process of dying (Ragan et al., 2008).

Palliative care approaches accept death as a normal process and focuses on improving the quality of life for terminally ill patients and their families by compassionately helping them to make the transitions that precede the final stages of life (Winker & Flanagin, 1999). As you can see, dealing with all of these facets of health requires an interdisciplinary team of health professionals (see Chapter 11 for a discussion of interdisciplinary teams), and palliative care organizations often include the services of physicians, nurses, counselors, and clergy.

Palliative care is closely associated with the hospice movement. Hospice organizations attempt to provide clients with palliative care. However, while palliative care may include services provided by hospices, palliative care can be offered at any point during an illness while hospice services are usually only provided during the last six months of life due to medical insurance reimbursement requirements (Reb, 2003; Zerzan, Stearns, & Hanson, 2000). Palliative care and hospice care are often used interchangeably because they overlap in many ways. However, palliative care is typically offered simultaneously with curative approaches to relieve suffering from stressful, painful, or debilitating symptoms (Ragan et al., 2008). By contrast, hospice care typically excludes curative treatment of primary illness and is limited to comforting terminally ill patients.

Barriers to Palliative Care

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