Pamela J Kovacs & David P Fauri. Handbook of Death and Dying. Editor: Clifton D Bryant. Volume 1. Thousand Oaks, CA: Sage Reference, 2003.
Persons admitted to health care institutions for acute, chronic, and emergency care who are dying receive care from a range of persons—professional staff, volunteers, family members, and friends. Institutionally based care is provided in hospitals, nursing homes, and hospice and palliative care units. Home-based care is also an option, with the assistance of home health care services, hospice, and family and other loved ones. The responsibilities of caregiving are often shared between formal and informal caregivers, including medical professionals, specialized auxiliary staff, volunteers, and family members. Health care professionals, especially in institutional settings, are increasingly limited by time and cost constraints in tending to the medical as well as the psychosocial needs of dying patients and their families.
Regardless of cause or setting, and depending on the nature and circumstances surrounding the death, a variety of caregivers may be involved in helping with the dying process. The word caregiver is used to describe both those who provide help on a formal basis (e.g., professionals and trained volunteers) and those whose help is provided more informally (e.g., family members, friends, neighbors, and others who are not associated with health care organizations but who have personal connections to the patient and/or family). (We use the hospice definition of family: “All those in loving relationships with the person who is dying, the people who can be counted on for caring and support, regardless of blood or legal ties”; Lattanzi-Licht, Mahoney, and Miller 1998:29.) By improving our understanding of the complexity of caregiving, we can enhance the care of the dying and better support those who provide that care.
In this chapter, we examine the variety of roles performed by formal and informal caregivers in assisting persons who are dying in health care institutions or at home with hospice and home health care services. We explore the influence of the institutional setting on caregivers and the roles of formal and informal caregivers, including how these are influenced by social, cultural, and technological factors. Although caregivers often derive professional and/or personal satisfaction from providing care to dying persons, they may experience stress themselves; therefore, we address how caregiver support in the form of resources and training can aid them in their efforts to provide compassionate and effective care.
In our multicultural society, professional caregivers face the challenge of maintaining cultural sensitivity and competence in their work with patients and families. We acknowledge that extensive variation exists among cultures in regard to the dying process, and we discuss this briefly, but other chapters in this handbook address the impact of culture on dying more directly. We discuss the more traditional caregiving model in health care institutions, which originates from a Western or Eurocentric tradition, because that is the reality most Americans experience.
The Changing Role of Health Care Institutions in the Dying Process
In 2000, the majority of deaths in the United States occurred in health care institutions, mainly hospitals (50%) and nursing facilities (25%). The remaining 25% died at home. Of those deaths occurring at home, some were sudden deaths and accidents and approximately 14% were anticipated deaths under hospice care (National Hospice and Palliative Care Organization 2002). Prior to the 20th century, it was more common for death to occur at home, with care provided by family members and neighbors,
perhaps supplemented by visits to the home from a local physician. This change in place of death has affected the roles that formal and informal caregivers play in the dying process. In the past, generations of family members surrounded the dying person, keeping a “vigil,” and managed funeral preparations, including preparing the body. Visitation and viewing of the body often took place in the home rather than in a funeral parlor. The modern-day use of the term funeral home and the decor found in such facilities draws heavily on the family home setting, suggesting comfort and warmth.
Caregiving in this earlier era was less of an option and more of an understood personal and family responsibility. In contrast, with advancements in modern medicine, people began to observe rather than participate as caregivers in the dying process, deferring more often to professionals in institutional settings. A desire to return to these home-based practices of caring for the dying has spurred the growth of the hospice movement in the United States since 1974; today, more than 3,000 hospices are in operation across the country, serving most communities. However, for a variety of reasons, including availability, the wishes of patients and their families, and causes of death, hospice was involved in fewer than 15% of all U.S. deaths in 2000 (National Hospice and Palliative Care Organization 2002). Hence the majority of Americans die somewhere other than home.
Several factors account for the shift in American society from traditional family caregiving to institutionally based caregiving. First is the belief that life can be prolonged in health care institutions through scientifically based care (Fins 1999). The technology of medical monitoring and treatment has become standard for persons who are seriously ill or dying. Second is a general discomfort with discussing and acknowledging death, which in some cases leads to denial about the reality of impending death. Like mental illness, physical illness and decline are viewed as unpleasant and uncomfortable reminders of our vulnerability and mortality. Medical institutions provide the benefits of science and technology for the dying while at the same time separating family members and loved ones from aspects of death that may be physically and/or emotionally difficult. Medical professionals are looked to for help in managing death and easing the dying process for the patient and family. The third factor contributing to the prominence of institutional caregiving is the increasing mobility of the U.S. population. Fewer families experience the immediate and local support of multigenerational, extended families today than in the past. As young people move away and older family members remain behind or relocate during retirement, the availability of family caregivers is often compromised, causing greater dependence on formal caregivers. Fourth, due to the trend toward smaller family size, fewer adult children are available to share the caregiving responsibilities for older adults (Moen, Robison, and Fields 1994). The fifth contributing variable is the fact that more Americans are living longer, often outliving those who would be their caregivers (spouses or partners, adult children, and friends) at the very time their caregiving needs increase.
Health care institutions are formalized in nature, with emphasis on routine and prescribed ways of accomplishing goals. The institutional setting provides symbolic functions concerning how care is given and how death is processed. Caregiving for the dying in medical institutions involves a specialized, structured social process governed by professionals and influenced by their training and prescribed roles, as well as by the rules and procedures of the institutional setting (Rosenberg 1987).
The quality of care that professional caregivers provide to the dying person and the support they provide to the patient’s family and loved ones depend on the professionals’ orientation toward death and dying, their roles in the process, and the degree to which the institution supports their work in this area. Providing health care under the pressures of cost control and managed care puts a premium on efficiency in staff utilization. This creates stress for professional care providers when they see the need to take time with a dying patient and the patient’s family members but find it difficult to do so because of demands to see other patients or to justify time spent with family members.
Standardized care and routines in institutions replace the more personalized care provided in a home setting. As hospitals experience financial pressures, private spaces where patients’ family members can meet together or with staff are often limited; this results in an environment that is not very conducive to addressing the social and emotional needs of grieving families. Also, in most institutional settings the primary relationship is that between the medical staff and the patient, and any relationship between staff and the patient’s family may be to some degree peripheral or secondary. Societal respect for scientifically based professional medical practice reinforces this arrangement. Ideally, however, for dying persons who are no longer responding to or who no longer desire aggressive, curative care, the focus of medical attention shifts to palliative care. The need is not necessarily for less care, but for care with a different focus, one with increased attention to the physical, psychosocial, and spiritual needs of the patient and his or her family. Such care is best provided by a multidisciplinary team of professional (formal) caregivers that includes a physician, nurse, nursing assistant, social worker, chaplain, and volunteer trained in palliative care.
Characteristics of Caregiving
Caregiving is multidimensional. For a particular patient it can often involve an array of caregivers, both formal and informal, and possibly in more than one setting. Even in an institutional setting, where professional staff members assume the major caregiving responsibility, family members and friends of the patient may continue with informal caregiving functions such as emotional support and other comfort measures.
Formal and Informal Caregivers
Ideally, caregiving for a dying person is provided through a team approach in which the team of caregivers includes professionals associated with health care institutions and family members and friends of the patient who are based in the home and community. Professionals are the designated formal caregivers, with socially sanctioned and prescribed roles for which they have received appropriate training and for which they are appropriately compensated. Formal caregivers in traditional institutional settings are medical professionals trained to cure, rehabilitate, and restore functioning. Hospice and other homebased care professionals often bridge the gap between institution and home with more training in palliative care.
In contrast, informal caregivers are family, friends, neighbors, and others who assist the patient with daily living tasks and provide emotional support, generally without payment (Hogstel 2001). According to the Family Caregiver Alliance (2002), in 1997 22.4 million U.S. households (23%, or nearly one out of four) were involved in caregiving to persons age 50 and older; it is expected that by the year 2007, that number could climb to 39 million.
The array of persons providing care to a given patient may vary over time, depending on the physical and psychosocial needs of the patient and his or her family as well as the resources available. Prior to a patient’s admission to a medical setting, the family has often carried major responsibility for care in the home setting. In an institutional setting, professional staff assume major responsibility, and in some cases hospice staff become the major source of caregiving.
Terminal illness, in contrast with death in an emergency situation or within a hospital intensive care unit, requires that formal and informal caregivers provide care over a longer period of time. Once hospice is involved, the unit of care shifts from the patient alone to the patient and his or her family. This can be a major factor in alleviating some of the stresses that family caregivers experience. At the same time, stress in the relationship between the patient’s family and medical staff can result if family members feel that the medical staff have referred the patient to hospice care “too late.” Delayed referral may result when it is difficult to predict the patient’s expected length of survival or when the patient and/or family members have difficulty accepting the hospice referral.
Gender and Caregiving
Although men are increasingly assuming greater roles in family caregiving, women in their mid-40s and older continue to provide approximately 75% of the care for older family members in the United States (Family Caregiver Alliance 2002). To date, it is unclear what impact women’s increased participation in the workforce has had on their involvement in family caregiving responsibilities. Moen et al. (1994) conducted a study of 293 women from four birth cohorts and found that women in all cohorts were equally likely to become caregivers, regardless of whether or not they were employed, confirming the idea that many women assume family caregiving roles in addition to full- and part-time employment. To accommodate their employment, some women are involved as managers of caregiving rather than as direct providers of care (both for children and for sick family members); others are more apt to share the responsibilities with other family members. As Conner (2000) reports, “The research findings on the effect of employment on women’s caregiving activities are mixed and somewhat contradictory” (p. 101). Some studies suggest that employment can moderate the effects of the caregiving experience on women, providing a socially acceptable limit on what care recipients might expect of caregivers; others suggest that the ability to juggle conflicting demands can be particularly rewarding and self-enhancing. Some researchers have speculated that in order to make time for caregiving, women who are also employed reduce their level of involvement in voluntary and social activities, whereas others have found that some women increase their participation in voluntary social activities that serve as a means of relieving the stress associated with caregiving.
Less is known about the experiences of male caregivers, because women are more often the subjects of research. Although daughters tend to provide more care for aging parents than do sons, this may change as the elderly population grows in this time of smaller family size and changing gender roles, making caregiving an expected role for all family members, at least in the dominant Western culture.
Ethnicity and Culture
Aside from gender differences, ethnic and cultural differences also influence caregiving practices. According to Hoffmann and Mitchell (1998), across cultures, “the family unit invokes a strong sense of belonging” (p. 5). Because caregiving is learned within the family, which is a cultural environment, it is understandable that the behaviors and roles related to caregiving are influenced by cultural values and practices (Phillips et al. 1996). Still, one must carefully examine generalizations about ethnic groups, because tremendous diversity exists within as well as among groups, depending on degree of acculturation, urban and rural experiences, socioeconomic status, personal values, and other factors. With this word of caution, we offer the following descriptions of the values and practices associated with caregiving within some of the primary ethnic groups in the United States.
Two important characteristics of African American families may affect the delivery of family caregiving: (a) African Americans are more likely than whites to live in extended family households, allowing caregiving
responsibilities to be shared by more family members; and (b) compared with white families, family roles in African American families tend to be more flexible and egalitarian, with men and women sharing household and family caregiving responsibilities (Conner 2000).
Hispanic and Asian American family values tend to stress respect for older people and the importance of family obligation, with strong intergenerational linkages. The Family Caregiver Alliance (2002) reports that among Americans between ages 45 and 55, a much higher proportion (42%) of Asian Americans provide care for older relatives than do white, non-Hispanic Americans (19%). A similar emphasis on respect for and inclusion of older family members is seen in Native American populations, especially those living in rural areas (Conner 2000), although there has been a shift toward greater dependence on community services to meet the needs of elders as more Native Americans have moved off the reservations to urban areas.
In their study of caregiver burden, Hoffmann and Mitchell (1998) found that this term is not universally recognized in all cultures. For example, historically the Amish view the opportunity to provide elder care as a gift, and Puerto Rican families guarantee their members protection and caregiving for life. More research examining family caregiving in various racial and cultural minority groups is needed if we are to gain a fuller understanding of the impacts of poverty and socioeconomic status on such caregiving as well as the degree to which family members in these groups assume the values and practices of the dominant culture.
Caring For the Caregivers
Ideally, persons who are dying in an institutional setting are given social support through the trajectory of the dying process, surrounded and supported by institutionally based caregivers, including professional staff and volunteers, and by their families and members of their community. A major distinguishing factor in the traditional management of illness in the institutional setting is that the patient receives care from professional medical staff in a setting that is organized specifically around the provision of this care (Corbin and Straus 1988). In institutional settings, patients’ family members may be relegated to corridors and waiting areas. Yet they are primary providers of care at various points in the dying process, especially in the home setting, and they can continue to give emotional support in the institutional setting. In the home setting, the work of caregivers is much more variable and ranges from help with activities of daily living to emotional support and psychological processes such as “saying good-bye” and tending to unresolved conflicts. In the institutional setting, the work related to daily living is taken care of by professional caregiving staff, but the emotional support of the family is still important. Health care professionals are increasingly recognizing this fact, as evidenced by recent trends toward the integration of palliative care in institutional settings that recognizes the value of addressing the psychosocial and spiritual, as well as the physical, needs of patients.
The experience of caregiving, especially as it relates to the final stage of life, affects all participants. Just as they provide care for patients, formal and informal caregivers also need to receive care in order to maintain their emotional and physical stability, so that they can continue to be effective caregivers.
Stressors and Caregiving
Caregiving, whether formal or informal, can be very demanding; in addition to consuming the caregiver’s time, it drains his or her physical and emotional energy. It should be recognized, however, that caregiving can also be a rewarding experience for both formal and informal caregivers. Formal caregivers can realize a sense of professional competence and fulfillment through their work, and informal caregivers may find that they experience increased family closeness and growth in their personal feelings of self-confidence. For both types of caregivers, the presence of social supports, personal coping mechanisms, previous preparation or current instruction in caregiving, and positive beliefs and cultural values about caregiving can help to minimize caregiver burden.
Caregivers may experience major stresses owing to emotional, physical, or financial pressures and relationships. Stressors may be immediate and short-term, or, especially in the case of families, they may be reflective of long-term relationships. Figure 2 presents a summary of the potential stressors related to formal and informal caregiving. It is normal for an individual to experience stress in a caregiving role, and the degree of that stress and the caregiver’s capacity to cope depend on a variety of factors. A person’s position on the continuum of caregiver stress fluctuates depending on life experiences, the availability of support and resources, and the person’s preparation for the role of caregiver. A thorough patient and family assessment and care plan for the dying patient should include an assessment of informal caregiver status. It is important that the care plan include attention to monitoring and minimizing caregiver stress, the goal being to bring caregivers as close as possible the center of the continuum shown in Figure 2. The goal is to minimize rather than eliminate stress, given the inherent nature of stress during such a challenging time of life.
Support for Formal Caregivers
Like caregiving, the provision of support for formal caregivers is multidimensional. It might include structured institution-based activities, active support groups for professional staff and volunteers, peer and individual supervision, and professional training and continuing education in end-of-life care. Some examples of institutional support include groups for staff and volunteers, supervisory support in an atmosphere in which it is safe to discuss the challenges of the work, and memorial services that provide time for staff and family to honor individuals who have died, as well to acknowledge the work and personal involvement of the caregivers. Hospice and palliative care programs to varying degrees include such supports for staff. Until recently, similar support was more limited in acute and critical care settings (Fauri, Ettner, and Kovacs 2000). As Curtis and Rubenfeld (2001) suggest in regard to critical care, “The challenge to clinicians and educators in this area is to span two cultures: the rescue culture of critical care and the hospice culture of palliative medicine” (p. 4). Clinicians, as well as patients and their families, need support and training in making the transition from attempting to cure, rescue, and prolong life to providing comfort and allowing death with dignity. In a survey of nursing homes, however, Murphy, Hanrahan, and Luchins (1997) found minimal support available to residents, their families, or staff members following deaths in these institutions. Recent initiatives through the Robert Wood Johnson Foundation’s Promoting Excellence in End-of-Life Care program and the Soros Foundation’s Project on Death in America address the need for education and support in nursing homes and other long-term care facilities.
Professional caregivers often experience stress as a result of unclear boundaries between themselves and patients’ families and in their relationships with professional colleagues. To a degree, this is set up within the curative role expected of medical staff. For example, when working with dying children, professional caregivers often have “unrealistic expectations and grandiose feelings of indispensability” (Lattanzi-Licht 1991:298). Also, caregiver strain among professionals on hospice teams has been attributed to role blurring and lack of clear role definition among nurses, social workers, and chaplains. Peer support groups and individual supervision are useful vehicles for clarifying such issues, processing feelings, and offering general professional support.
In addition to institutional activities and resources, a critical source of support for formal caregivers is professional training and continuing education, because it creates confidence and increases competence. Recent trends reflect the desire of many organizations to help professionals and the general public feel more comfortable and competent with end-of-life care issues. Several important public and private initiatives have focused on the education of physicians, nurses, social workers, chaplains, and others who provide care to the dying (see, e.g., McPhee et al. 2000). Initiatives to improve palliative care education for professionals and the public include the American Medical Association’s Education for Physicians in the End-of-Life Care Program (EPEC) and a similar program for nurses (ELNEC); the U.S. Department of Veterans Affairs’s Faculty Scholars in End-of-Life Care Program; the Soros Foundation’s Project on Death in America; two programs funded by the Robert Wood Johnson Foundation, Last Acts and Community-State Partnership; and the Public Broadcasting Service’s project tied to the Bill Moyers series On Our Own Terms: Moyers on Dying. All of these are examples of broadbased efforts to enhance end-of-life care through professional and public education, state policy, and community awareness.
Addressing the individualized support needs of professional caregivers presents a challenge, given the wide range of personal and professional comfort levels and expertise with death and dying. Harper (1977) has developed a model of the stages of development that identifies an adaptation process that professionals experience over time as they become more comfortable in this work. Harper has focused in her work on professionals working in oncology, and although empirically based studies are not available, chapters she has written on her model continue to be included in edited volumes addressing end-of-life care (Harper 1989, 1993). Harper’s model contains the following five stages, in 3-month increments, related to “coping with professional anxiety in terminal illness” (Harper 1977:29):
- Initially one intellectualizes as a way of dealing with anxiety and lack of knowledge (0-3 months).
- Next, one simply tries to survive emotionally (3-6 months).
- There occurs a feeling of depression often related to painful experiences (6-9 months).
- Eventually, after 9-12 months of this work, one experiences “emotional arrival” as skills are acquired and enhanced.
- In the final stage, achieved between 12 and 24 months, one can feel deep compassion in this work because of selfrealization, self-awareness, and self-actualization.
Support for Informal Caregivers
Informal caregivers also need support. Most often, for assistance in caregiving an informal caregiver depends on family members, friends, and others in his or her community, many of whom are also personally affected by the patient’s impending death. Hospice recognizes the need to support informal caregivers, and most programs provide respite care to give caregivers time away from this emotionally draining work. Respite may be provided by a volunteer or staff member for a few hours, or, when the physical needs of the patient are especially demanding, the patient may be admitted to an inpatient unit for a period to provide relief for the informal caregivers.
Much of the research on caregiving has focused on generational issues, in particular the “sandwich generation” phenomenon of adult children caring for both their own children and their older parents (Pearlin, Pioli, and McLaughlin 2001). Increasingly, however, older spousal caregivers may be forced to restructure their lives to accommodate the demands of caregiving, suggesting that this phenomenon of fitting in caregiving while managing other roles is not limited solely to the younger generation of adult children.
Information and education about how best to care for the patient are important forms of support for informal caregivers. Knowledge about the following topics can help to prepare and support informal caregivers: medication; moving, bathing, and assisting the patient safely and comfortably; nutritional needs; and the dying process itself. Assistance with legal and financial matters such as funeral arrangements, living wills, power of attorney, and DNR (do not resuscitate) orders is another form of support for those in the caregiving role. Hospice families receive this information because in the hospice approach family caregivers are considered an important part of the care team and a link from the home to the hospice team. An informed family is better able to provide care and is usually more comfortable doing so. Time invested in educating family members often helps ease their fears, increases their competence, and may minimize emergency calls. Hospice professionals must recognize, however, that for some people, such information may be overwhelming rather than comforting. The identification of those members of the family system with whom it is most appropriate to share this information is an important part of the patient and family’s psychosocial assessment.
Providing informal caregivers with informational support and education takes time, and in busy, short-staffed, fast-paced hospital units, staff usually do not have much time or incentive to answer questions and help to educate patients’ family members. As more health care staff are trained in palliative care, addressing the psychosocial and spiritual needs of patients and families through education, counseling, and other supportive measures should become more fully integrated in traditional care.
Support groups are another source of information support. In such groups, family caregivers can learn how
others manage their caregiving roles as well as receive emotional support. Unfortunately, scheduling support group meetings is challenging in hospital settings, given short lengths of stay, limited meeting space and time, and families’ sporadic visitation schedules. The establishment of support groups is more feasible in nursing home and hospice settings, due to the longer time frame in which care takes place.
Concern about the stress that family caregivers experience, often referred to as caregiver burden, has been addressed in the professional literature since the 1980s. Terms such as caretaker role fatigue, spousal burnout, and role engulfment refer to an imbalance between the physical and mental resources needed to care for the recipient and those available within the family unit or community (Hoffman and Mitchell 1998). The demands of caregiving often result in depression, anxiety, sleeplessness, and other signs of emotional strain. In addition, caregivers might experience financial hardship and deterioration of their own health, which in turn affects other family members and the patient.
The need to alleviate the physical and emotional stress associated with caregiving has led to the development of support groups, the publication of self-help literature, and other activities designed to minimize caregiver isolation and reduce stress. There has also been a policy response to the increasing involvement and importance of family caregivers, indicating a new appreciation of the associated role strain. In 2000, the U.S. Congress provided funding for the National Family Caregiver Support Program under Title III of the Older Americans Act. This program encourages support for caregivers through training, counseling, and information, as well as respite care for family members who are providing support for older relatives at home (AARP 2002).
The physical, emotional, and financial strains inherent in being a caregiver are a reality. Conner (2000:248), however, questions whether caregiving must be defined only as a burden and identifies potential rewards in this “opportunity.” She suggests that many caregivers derive enhanced selfesteem from managing the multiple roles associated with caregiving and that through these multiple roles caregivers are often linked to the greater community. Family caregiving is a sign of the strength of the family at a time when rates of divorce, poverty, juvenile crime, and substance abuse as well as other statistics indicate a decline in the American family. Lattanzi-Licht et al. (1998) describe this complexity: “Most [hospice] families relate to the dying process as both a difficult and valuable time…. the majority of family members who care for a loved one describe high feelings of self-satisfaction and little regret” (pp. 30-31).
Negotiating Caregiving among Staff Members
The setting in which caregiving takes place influences the nature of caregiving roles. Traditionally, health care institutions are organized around the medical model, with a social order that places the physician at the top of a hierarchy of care. Straus et al. (1964) suggest that this order is negotiated and based on each person’s “definition of the situation” (Wiener 2000). The diverse and sometimes divergent perspectives of the participants shape a social order that is negotiated through an ongoing process of bargaining, maneuvering, restraining, and compromising. Staff representing a variety of professions bring differing expectations of team members’ caregiving roles to the team setting. Although this creates a rich environment in which team members can engage in critical thinking about their beliefs and practices and how they can contribute to improved patient care, this negotiation process can be challenging. It can take many different courses, depending upon the people involved, the professions represented, and the setting. In traditional settings, the unit of care, or “unit of attention,” is the patient, as care tends to focus on “cure-oriented” therapies and interventions; negotiation in such settings involves primarily those who provide or control the interventions. In a less traditional model of care, such as hospice, however, the unit of care is the patient and the patient’s family, and negotiation therefore also involves informal caregivers. These different perspectives help shape the nature of the care.
In an institutional setting, caregiving is the responsibility of physicians, nurses, unit support staff, and ancillary service staff (e.g., social workers, chaplains, physical therapists, occupational therapists), with limited assistance from volunteers. Emergency medical technicians, emergency room personnel, and organ recovery and transplant staff also become involved when appropriate. Medical professionals, in particular physicians and nurses, have technical expertise and authority, status, and knowledge of institutional processes. Dying patients and their families often defer to this expertise, leaving medical staff in a control position in care planning and decision making. This might be expected in matters related to medical treatment and physical processes, but it can also extend into areas related to the psychosocial and spiritual aspects of end-of-life care.
It is often stressful for medical staff to help grieving families and to devote time to anything beyond immediate patient medical requirements. Following the death of a patient, family members and friends often face grief in the unfamiliar institutional setting (VonBlock 1996; Wells 1993). This may elicit bereavement needs that not all staff are prepared to address, but increasingly hospitals have staff members trained in bereavement matters or bereavement teams headed by clergy or social workers. Staff with this training can best assist the dying patient, the patient’s family, and medical staff with bereavement care by becoming involved in the case as early as possible (Fauri et al. 2000).
Traditionally, medical practice in an institutional setting is intended to extend life, in a quantitative sense. Physicians spend considerable energy organizing and directing treatment for their patients (Straus et al. 1964). Persons who have been trained to cure or rehabilitate often perceive a patient’s death to be a failure. Health care professionals trained in palliative care, however, consider comfort care and symptom management to be part of standard medical care. Once a decision is made that palliation is the appropriate focus in the patient’s care, medical care shifts in orientation. Palliative care enhances the quality of life remaining, and for formal caregivers, this requires a shift in emphasis to “comfort care.” It also requires rearrangement of the order negotiated for treatment. For example, management of pain through medication and pain control procedures is emphasized, requiring continuing assessment and adjustment of medication and pain control procedures by medical staff. As refocusing takes place, the presence of family and other loved ones can be critical to the emotional well-being of the patient. Family members and friends are better able to provide emotional support to the patient when they have the comfort of knowing that the patient’s pain and symptoms are being managed.
There was a time when caring for dying patients and their families was an integral part of family and community life as well as the practice of medicine. As medical care became more specialized and technological advances facilitated a societal desire to avoid death and prolong life, the care of the dying became more fragmented. Health care institutions play a key role in the lives of dying patients; hence the importance of support for professional caregivers.
We recommend that support, resources, and training be readily available for formal caregivers, including increased, ongoing, and culturally sensitive training in end-of-life care for physicians, nurses, clergy, social workers, pharmacists, nutritionists, and other allied health professionals who assist patients and families during any part of their experience with life-limiting illness. Formal caregivers need the opportunity for bereavement support through structured support groups, individual and peer supervision, and time off as needed for personal care and professional development. Formal caregivers need to have time and opportunities to clarify role confusion and ambiguity associated with stress and occupational burnout.
Informal caregivers need education and emotional support in order to perform their roles. These forms of support are often provided by local health care organizations, community associations, private practitioners, and national organizations. Through participation in family caregiver support groups, as well as through less formal individual conversations with health care professionals, informal caregivers have opportunities to ask questions and share their fears; they can learn how to change dressings, administer medications, bathe a dying relative, and deal with their guilt when they cannot fulfill the roles they believe they should. Informal caregivers need societal and financial support such as that reflected in the National Family Caregiver Support Program, which helps families provide care for older relatives. Parents, adult children, and other caregivers need family leave time from work and flexible work schedules that will allow them to balance multiple roles. They may also benefit from spiritual guidance or counseling. The recent focus on death and dying in the mass media, increased training in end-of-life care in the medical professions, and important policy initiatives addressing the rights of the dying and encouraging respite care for caregivers are all positive signs. Much needs to be done, however, to maintain this momentum, given the societal desire to deny and “cure” death.
Caring for the dying will always be one of life’s most challenging privileges. With proper support, resources, and training, both formal and informal caregivers are better able meet this challenge in a way that enhances not only the lives of persons who are dying, but their own lives as well.