Sarah Brabant. Handbook of Death and Dying. Editor: Clifton D Bryant. Volume 1. Thousand Oaks, CA: Sage Reference, 2003.
The tremendous interest in the 6-hour PBS series On Our Own Terms: Moyers on Dying when it was first aired supported Bill Moyers’s rationale for producing the groundbreaking program: “There was a growing realization that something has gone wrong with the way we provide care for the dying and support their caregivers, and the time has come to fix it” (quoted in Public Broadcasting Service 2001). An estimated 19 million Americans tuned in when the series was first broadcast in 2001; the ratings were 58% higher than the national PBS prime-time average (Public Broadcasting Service n.d.). Although the focus of On Our Own Terms is how we die, the series shows that where we die is parallel in importance, accentuating the contrast between death with hospice care and death in an acute care facility. The current attitude toward preferable place of death is reflected in a recent Time/CNN poll that showed that 70% of those polled wanted to die at home. In reality, 75% of Americans die in medical institutions, and more than a third spend a minimum of 10 days in an intensive care unit before they die (Cloud et al. 2000).
In the early part of the 20th century, dying in a hospital was limited to those without financial or social resources. Sick individuals with sufficient resources recovered or died at home, among family and friends. By 1994, 78% of Americans died in hospitals, medical centers, or nursing homes; only 17% died at home (Corr, Nabe, and Corr, 1997). Although statistics on causes of deaths in hospitals are readily available, information about precisely where deaths occur is not. Statistics collected in 1997 at the University of Virginia Health Sciences Center, however, show that 18% of the deaths in that medical center occurred on floor units, 27% on the hospice unit, and 55% in intensive care units or the emergency room (Chapple 1998).
The shift in place of death for most Americans from home to institution is generally attributed to two factors: the expansion of medical technology and demographic changes. The advancement of medical technology has occasioned the use of equipment and the employment of skilled technicians in caring for the dying that are beyond the reach of individual physicians. Concomitantly, the geographic mobility of the U.S. population has minimized the probability that relatives or long-time friends are available to care for an individual at the end of life. As a result, dying and death have been relegated to professionals and thus have become phenomena relatively unfamiliar to most Americans (DeSpelder and Strickland 1999).
Death in an acute care facility has come to be associated with painful and often futile attempts to ward off death, or at least to delay it (see, e.g., Cloud et al. 2000). Hospice care, first initiated in the United States in 1974, has become, for some, a preferable alternative. In contrast to the cure-centered, often impersonal approach of the general hospital (Kalish 1985:293), hospice care focuses on palliative measures when there is consensus that death will occur in the near future (e.g., within 6 months) and reversal of the dying process is improbable. In hospice care, inclusion of the patient’s family as an integral part of the care unit is a basic objective (Zimmerman 1981:5–6). For a variety of reasons, however, ranging from accessibility to personal preference, less than 20% of those who die in the United States receive hospice care (Corr et al. 1997). Thus, with the exception of the relatively small number of Americans who die instantly as the result of trauma or system failure (less than 10%), most Americans in the near future can expect to die in an institutional setting.
The American cultural emphasis on “the good death,” as reflected in movies and television programs, has resulted in considerable pressure on hospitals in general and nurses in particular to provide hospice-like care (often defined as palliative care) when death is near. As Chapple (1999) warns, however, the often abrupt shift from aggressive care to palliative care is similar to trying
to “play baseball on the gridiron while the football game is in full swing.” In such a situation, “a top priority is to avoid being trampled” (p. 28). This notion of game shift warrants sociological attention. Thus, in this chapter, rather than comparing philosophical, political, and/or technological end-of-life issues, I employ Goffman’s (1959) use of the theater as an analogy to focus on the differences in human interactions between hospice and institutional (particularly acute care) settings in regard to end-of-life care.
The Theater as Analogy
According to Goffman (1959):
A social establishment is any place surrounded by fixed barriers to perception in which a particular kind of activity takes place … Within the walls of a social establishment we find a team of performers who cooperate to present to an audience a given definition of the situation. (P. 238)
Three components of Goffman’s definition of a social establishment are important to my discussion in this chapter: the individual as a member of a team of performers, the physical space wherein this performance takes place, and the performance itself. With respect to the concept of a team, Goffman (1959) writes:
A team, then, may be defined as a set of individuals whose intimate co-operation is required if a given projected definition of the situation is to be maintained. Team is a grouping, but it is a grouping not in relation to a social structure or social organization but rather in relation to an interaction or series of interactions in which the relevant definition of the situation is maintained. (P. 104)
Goffman (1971) also observes that “social settings and social occasions are not organized in terms of individuals but in terms of participation units” (p. 21). Individual actors, then, come together to present a particular kind of drama that at least purports to be based in consensus with respect to norms, values, and beliefs. Critical to this notion of a team of performers are the presence of an audience for whom the performance is intended and the possibility of outsiders who view the performance without the consent or, perhaps, even the knowledge of the performers.
The presentation or performance takes place within a particular space or stage. This space is often divided into a front region, where the performance is presented, and a back region, where the performance is prepared. As Goffman (1959) notes, “Access to these regions is controlled in order to prevent the audience from seeing backstage and to prevent outsiders from coming into a performance that is not addressed to them” (p. 238). Finally, the performance is not simply the unfolding of a set of individual behaviors, but rather “a preestablished pattern of action” (p. 16). This preestablished pattern of action may be thought of as the drama and includes historical as well as cultural components. Using Goffman’s analogy of the theater, in the pages that follow I compare death under hospice care with death in an acute care facility with respect to the drama and the stage on which the drama is played out, the actors, and the performance. I then discuss the implications of the differences between the two for both those who provide care and those who receive it.
The Drama and Stage
Until the middle of the 19th century, care of the sick and dying in the United States took place largely in the home. Public care was relegated to almshouses, which were places few people entered voluntarily. Over time, the successful treatment of injured soldiers in military hospitals changed public attitudes toward caring for the ill in public facilities and signaled the beginning of the modern hospital. Hospitals came to be seen as places for the curing of certain diseases, not as the end of the road for society’s less desirables. Today’s hospitals are primarily short-term, acute care facilities; their primary mission is to “treat specific diseases and to return people to society with more or less the same functional capacity they had before they became ill” (Corr et al. 1997:204). In such settings, death is a failure. As Ariès (1982) notes:
When death arrives, it is regarded as an accident, a sign of helplessness or clumsiness that must be put out of mind. It must not interrupt the hospital routine, which is more delicate than that of any other professional milieu. It must therefore be discrete. (P. 586)
Indeed, for many years, death in hospitals was kept so discrete that when Elisabeth Kübler-Ross (1969) requested permission to talk to dying patients in one hospital in the late 1960s, she was told that no one was dying there.
Although the words hospital and hospice can be traced to the same medieval root, the attitude toward death in hospice care is quite different from that found in acute care facilities. In hospice care, death is anticipated, given that a life expectancy of 6 months or less is required for a patient’s entry into the program. The purpose in hospice care, then, is not to avoid death or even to delay it, but rather to facilitate an individual’s dying in a way that meets that person’s unique needs (DeSpelder and Strickland 1999). In contrast, in an acute care facility death is an aberration, a failure on the part of the technology and/or the medical profession.
Thus the contrasting concepts of “letting nature take its course” and “aggressive intervention” characterize the fundamental difference between hospice care and other types of health care, particularly health care in acute care settings. Letting nature take its course is a process-oriented perspective; aggressive intervention is an event-oriented perspective. The dramas enacted in the two settings are thus quite different. Hospice care calls for a “wait and
watch” performance. There is no specific goal other than pain control. Timing is unimportant, and the process of dying is allowed to proceed at its own pace. In contrast, the critical care unit focuses on the immediate event in order to maintain, stabilize, and/or improve the patient’s condition as quickly as possible. Although both dramas demand skill, the first requires an ability to watch without doing; in contrast, the second requires an ability to assess and respond quickly.
Hospice care takes place within a variety of settings, including patients’ homes, freestanding hospice units, and hospice-based programs within hospitals, in either discrete units or assigned beds (Zimmerman 1981:10). Regardless of the setting, inclusion of the patient’s family and friends is fundamental, thus there is a need for sufficient physical space, a commodity often overlooked in both the social science literature and the nursing literature on hospice. This includes space in proximity to the patient, the site of the drama itself, as well as what Goffman (1959) calls “backstage” space. This latter is a place where “the performer can relax … drop his front … forgo speaking his lines, and step out of character” (p. 112). It also provides the performer space in which to practice the performance before the actual event.
In a hospital, the stage on which the drama is played out is commonly very small. In a floor unit there may be room only for the patient’s bed and one or two chairs. Monitors and other medical equipment may take up so much space that no more than one or two persons may share the room at any one time with the patient and hospital personnel. In an acute care unit, the space around the patient’s bed is devoted totally to technology. Additionally, the cost and complexity of this technology necessitate that the hospital allow minimum space between patients’ beds. Thus two or more dramas may be performed on one small stage at the same time. Backstage space for patients’ family members and friends is limited in both floor and critical care units, and even when it is available (e.g., a family waiting room), it often affords little privacy. Private areas (such as the hospital chapel) are often at some distance from the stage itself. This lack of backstage space precludes the release of emotions as an appropriate behavior. It also negates the performers’ opportunity to practice before the actual performance.
At the heart of hospice care is the notion that “the terminally ill person’s own preferences and lifestyle must be taken into account in all decision making” (Kastenbaum 2001:131). Thus, in hospice care, the patient is the lead actor. This does not mean that the dying patient’s every wish will be granted, but it does mean that the patient will not endure thirst or pain or gasp for breath when there are means available to prevent it. It also means that all involved take seriously any written documents in which the patient has expressed his or her wishes. This includes, of course, advance directives. Major areas of concern in hospice care are the patient’s right to a sense of basic security and protection, the patient’s access to opportunities for leave-taking with those most important to him or her, and the patient’s opportunity to experience the end of life in a way that is most meaningful to him or her. Family and friends, as defined by the patient, are of secondary importance only with respect to the patient. These individuals have a right to information as well as the right to express their thoughts and feelings. They have a right to privacy with the patient both before and after death. Finally, the members of the patient’s interdisciplinary care team have the right “to adequate time to form and maintain personal relationships with the patient” (Kastenbaum 2001:132).
Hall’s (1998) description of an acute care setting provides a sharp contrast to the status of the patient in hospice care:
If there was an ethics committee in place in any [of the hospitals in which I worked] it was largely invisible. Certainly it did not figure in the daily operations of the nursing unit; decisions were made on a pragmatic basis. Anything even approaching what might have been termed an ethical dilemma was arbitrated or flat out decided by the doctor or administrator. Those on the front line were not involved….The question of patient rights was addressed by reading them to new patients and duly charting that a patient had refused medication. The number of times I saw a doctor badger a patient into treatments, procedures or medications they expressly said they did not want far exceeded the times that discussion among team members and patient occurred. And while the old fashioned approach definitely shows signs of wear—the newer doctors, especially those dealing with HIV/AIDS patients, showed far more inclination to take their patients’ desires as well as their prognoses into account—for the most part, we operated on the assumption that “doctor knows best.” (P. 4)
Thus differences between hospice care and institutional acute care with respect to the roles played by physicians and nurses warrant special attention.
In hospice care, all health care is provided under the direction of a qualified physician. Basic to the hospice philosophy, however, is the notion of a holistic care plan that acknowledges the patient as an intellectual, emotional, and spiritual being as well as a physical one. Thus the physician directs a team of professionals that includes nurses, social workers, occupational and speech therapists, pastoral care professionals, and a variety of consultants (e.g., radiologists, psychiatrists). Although the hospice physician directs the team, he or she is considered a member of the team who assists the patient and his or her family in the dying journey by providing unique professional skills, not as the individual responsible for a particular outcome.
In contrast, a physician in an acute care facility is charged by society to produce “a cure so that a patient can return to normal activities or at least to near-normal activities” (Kalish 1985:278). The dying patient, then, becomes a source of conflict. As Kalish (1985) notes, if physicians “continue to treat a dying person, they are applying their costly skills and training to a situation that might be better handled by others; if they do not continue to treat the dying person, they then feel they have failed to fulfill the patient’s [and society’s] expectations” (p. 279).
In hospice care, nurses bear the primary burden of ensuring patient comfort (Markel and Sinon 1978). In a real sense, this is the traditional role of the nurse, which originally included not only concern for the patient but concern for his or her family and friends as well. The degree to which the inclusion of patients’ family members and friends was an important component in nursing care in the first half of the 20th century is reflected in the suggested code of ethics presented by the American Nurses Association in 1926:
Therefore the nurse must broaden her thoughtful consideration of the patient so that it will include his whole family and his friends, for only in surroundings harmonious and peaceful for the patient can the nurse give her utmost of skill, devotion and knowledge, which shall include the safeguarding of the health of those about the patient and the protection of property. (P. 600)
Advances in technology and drug therapy, and the concomitant division of labor into increasingly narrow specialties, however, have minimized both the time professional health care providers have to spend and their opportunities for interaction with patients’ family members and friends. Indeed, research has shown that today it is not uncommon for nurses to regard their expertise with machinery as part of and even the ultimate expression of nursing care (Barr and Bush 1998). The care of family and friends has been delegated to others, such as social services or pastoral care workers. The American Nurses Association’s (1985) most recent code of ethics includes the patient’s family in the circle of care only when death is imminent:
The measures nurses take to care for the dying client and the client’s family emphasize human contact. They enable the client to live with as much physical, emotional, and spiritual comfort as possible, and they maximize the values the client has treasured in life. (P. 4)
In the critical care setting, however, this mandate becomes problematic. As Chapple (1999) observes:
In reality, death in the intensive care unit (ICU) is neither simple nor natural. [Nurses] would like this to happen “naturally,” but our interferences in Nature’s course up to the point of making the decision to withdraw life support have eliminated the possibility. (P. 25)
In an acute care facility, the possibility of the patient’s dying may certainly occur to the patient, the nurse, and/or members of the patient’s family. However, as Chapple (1999) notes, “death is not the mission of any ICU” (p. 25). Indeed, the goal of everyone concerned is to prevent death. Thus, until the decision is made to discontinue treatment and/or to withdraw life support, death is a taboo topic. Dying, then, has no place in the performance played out in the critical care area. In contrast, the primary players in hospice care—the patient, at least one family member, and the hospice team—are in agreement that death, although not the mission, is the prognosis, and dying is what the drama is all about.
In an institutional setting, then, the shift from an eventoriented drama to one of process necessitates a major shift in script (i.e., construction of reality) for most, if not all, of the players. One or more members of the patient’s circle of family/friends may have already defined the patient as “dead” when he or she entered the hospital; others, however, may have hoped for continued life. Those who define the patient’s situation as hopeless often avoid the hospital or spend their time in semibackstage places, such as the hospital cafeteria or parking lot. Those who are onstage generally at least give lip service to hope.
With the shift from event-oriented to process-oriented drama, there may be considerable inconsistency in construction of reality among those who are onstage. The nurse and the patient’s mother, for example, may concur that the patient is dying; the patient’s father, on the other hand, may not. Multiple scripts demand more space onstage as well as greater access to backstage space, neither of which is available in critical care units and both of which are often limited in floor units as well.
An example of the lack of appropriate backstage space in institutional settings and the need for such space comes from the case of John, a member of an AIDS support group I facilitated. John had been hospitalized for some weeks for treatment of an AIDS-related illness when, as a result of the physician’s decision to discontinue treatment and provide palliative care only, the drama shifted from treatment to letting John die. Both John’s mother and his partner had questioned continued treatment for several days; John’s father, however, had continued to hope for a cure. I remember the moment when he walked into his son’s room and suddenly realized that his son was dying. He began to shake uncontrollably, and the nurse suggested that I go with him to the nurses’ break room. We had just entered the break room when another nurse came in and demanded that we leave immediately, saying that this was
where she ate her lunch. We had, in a real sense, violated her backstage. Fortunately, I knew the hospital well and was able to guide John’s father out onto the fire escape, where he sobbed for some 15 minutes or more.
When the drama shifts and becomes event oriented rather than process oriented, the rights and obligations of the performers shift dramatically. In a critical care setting, the tasks of the primary actors are fairly simple. The patient is supposed to get well; the medical personnel are supposed to make this happen. Thus the patient is supposed to relinquish his or her rights to dignity, privacy, and control to the medical personnel. In return, the medical personnel are obliged to make every effort to maintain, stabilize, and improve the patient’s heath. Although the role of the patient’s family is to be supportive in this endeavor, family members’ primary task often becomes one of not interfering as the series of events resulting from the illness or trauma occur and then are assessed and treated.
When death is inevitable, the task of the patient is to let go (not the same as giving up). Some thanatologists suggest that this is a conscious act on the part of the dying person. Certainly, numerous anecdotal reports support this notion (see, e.g., Callanan and Kelley 1992). Given this task, the patient’s rights include the right to comfort, the right to respect, and, above all, the right to make the decision to let go in his or her own time and not in accordance with anyone else’s needs or preferences. In addition, the patient has the right to choose companionship or privacy both during the process and at the time of death. Needless to say, in a critical care setting, lack of space, proximity of other ill patients, and frequent reminders from other units (e.g., emergency or recovery rooms) that a transfer is imminent do not enhance the probability that the patient’s rights will be honored.
The primary task of the patient’s significant others is to say good-bye in such a way that the patient is allowed to die in peace and the family members or friends are able to look back on this time with a sense of fulfillment about the way in which they said good-bye. In order to accomplish this task, family and friends have a right to information, guidance, and affirmation that they are doing what they need to do—that is, playing an acceptable/appropriate role in the drama.
The professional caregiver has an obligation to define the situation (this includes providing information about the drama itself as well as expected role behavior), to set the limits for the performance of both the drama and the roles within the drama, and to model the behavior expected of all of the performers. The professional caregiver also has the responsibility of taking care of him- or herself, in order not to become an added responsibility for the other performers. Coupled with these complex tasks is the professional’s right to feel good about him- or herself, as a professional and as a human being. The latter is especially important.
In contrast to a growing body of nursing literature that suggests that critical care nursing is more stressful than nursing in other areas because of a variety of external factors (e.g., the need to assess and act quickly), some researchers have suggested that personality characteristics may be an even more important factor (Milazzo 1988). Thus a nurse may feel that he or she has provided the best possible nursing care and at the same time feel that he or she has somehow failed as a human being. The demand to shift quickly from an event-oriented drama to a process-driven one may exacerbate this feeling of failure as a human being.
The problematic nature of the shift from an eventoriented drama to a process-oriented one is not limited to the major players. The process-oriented drama requires a large supporting cast. The team approach is basic to hospice care. Physicians, nurses, clinical nurse practitioners, social workers, physical therapists, chaplains, and volunteers are all important components in a comprehensive approach aimed at meeting the social, physical, emotional, intellectual, and spiritual needs of the dying person. All the players share equal billing. It is also important to remember that this team is in place before the patient is defined as dying. The team members know each other; they have been through dress rehearsals together.
Although the various players mentioned above may be available in any given institutional setting, their coming together as a team for a specific person is often problematic. In an event-driven drama, support staff are identified and called in only as needed. Trained to focus on event rather than process, team members may take some time to develop the ability to work together in a process-oriented drama. These individuals may not know each other; they may not have ironed out any problems that could arise when boundaries between professional turfs are questioned, and some or all may still be using an event-oriented script.
As Chapple (1999) notes, the objective in the acute care unit is clear: to save the patient’s life. “The rules and strategies of cardiopulmonary resuscitation (i.e., airway, breathing, circulation) and Advanced Cardiac Life Support algorithms, constantly refined and updated, tell us how to play the game with the best chance of success” (p. 25). There are no rules and strategies when the decision to withdraw life support occurs. Those who played an active role in making this decision (i.e., physicians and ethicists) have now completed their part in the drama and withdraw from the stage. The nurse, then, becomes the director of the new game. Chapple continues:
A decision to withdraw life support, ethically made, does not often address the hands-on management issues that surround the dying process. Without a shared understanding of outcomes and standards, chaotic care can result. Hospice personnel have
such a shared understanding of the terminal care they provide, but the context of hospice practice and the longer death trajectory of hospice patients makes translation of that understanding into ICU practice problematic. (P. 28)
Using the dramaturgical model, shifting from the event-oriented drama of aggressive intervention to the process-oriented drama of letting nature take its course is tantamount to trying to produce grand opera on a stage designed for intimate dinner theater. It is not going to work. The stage itself is too small, the supporting staff is not assembled, and few if any of the performers are reading from the same script. Time—to plan, to learn the script, and to rehearse—is essential if the process-oriented drama is to be successful.
Hospice care professionals have learned that a patient’s entry into hospice within hours or even days of death is problematic (Head 2000). The director of one hospice program suggests that a patient needs a minimum of 2 months in hospice care in order to experience the maximum benefit of such care (Nelson Waguespack, personal communication, April 17, 2002). Hospice care may not be desirable for some patients in acute care units even when hospice care is readily available. Even though a hospital may have a hospice unit available, a patient may prefer to remain in the acute unit, where the patient and his or her family knows the staff and is familiar with the surroundings. Regardless of the reason, the pressure on nurses in hospital settings, especially in critical care units, to provide hospice care at the end of a patient’s life is unreasonable. It is possible, however, for acute care units to provide components of hospice care.
A closer look at the hospice drama reveals two distinct themes. Although both come under the rubric of the peaceful death, they are, in fact, quite different. One is pain control; the other has to do with completion of unfinished business on the part of the patient and his or her family and friends. Because of the emphasis on symptom control in hospice care, hospice professionals are well trained in pain and symptom management for a number of terminal diseases (Davie 2001). In part because of this expertise, the terms hospice care and palliative care are often used interchangeably. Indeed, by 2000, the National Hospice Organization had changed its name to the National Hospice and Palliative Care Organization. As Hunter (2001) notes, however, hospice care and palliative care are not the same:
Hospice is a formalized interdisciplinary program of end-of-life care doing business under the provisions of the Medicare Hospice Benefit [enacted in 1982]. Palliative medicine (or, as some call it, palliative care) is the branch of medicine that specializes in caring for patients who cannot be cured and for whom the focus of care is comfort and maximizing the quality of life. (P. 3)
Despite the advances made in both hospice care and palliative medicine, at the present time, as Beresford (2001) points out, there is “no third-party reimbursement (other than hospice care) specific to the provision of palliative care and there is no regulatory structure or standard-setting body for palliative care” (p. iii). This, then, is a legal, and probably political, issue that is outside of the set of responsibilities that a nurse may reasonably be expected to fulfill.
Concerning the second theme, completion of unfinished business on the part of the patient and his or her family and friends, however, nurses may be able to help to some degree. Chapple (1999) recommends the following:
When we withdraw life support, we need a simple statement to acknowledge the fact that a new game has started on our inhospitable field to orient us to our new priorities of care: Dying is a process, and attending to the dying process is an ethical end in and of itself. (P. 30)
She suggests that nurses do three things: invite participation in the process, allow time to pass, and allow for unpredictability.
Invitation to Participate
Chapple suggests that in inviting patients and their families to participate in the dying process, nurses should share both power and powerlessness. Power includes access to information and control of situation. Nurses can share information about the dying process in general as well as about particular cases they have experienced. They can also invite the other participants to share experiences they may have had with both death and dying in the past as well as contribute suggestions for the process that is taking place at this time. How do the participants define life and death? What do they think happens following death? Do they wish to be present during the process and/or the death? Are there religious or cultural norms that they wish to consider? Sharing power also means acknowledging and affirming cultural differences. Sharing powerlessness means sharing both lack of information and lack of control in the given situation. It is easier for participants to acknowledge regrets, sadness, and fears when they know that these emotions are shared with and affirmed by others. For nurses, this is a time for listening, not talking. A simple nod in response to another’s words is often sufficient.
Allowing others to participate includes letting others share in immediate tasks. Knowing that you did something, however trivial, to assist a loved one in his or her last hours is a tremendous asset in the grief work that follows a death. I remember one occasion when a father was waiting for his son to die from AIDS. The young man was in no apparent pain, but he showed no evidence of being aware of the presence of others. His father paced the room, his hands clenched together. At one point, I rose to adjust the damp cloth on the young man’s head and the father asked if he could do that. I handed him the cloth, and as he stroked his
son’s face with it, he told me about the times he had bathed his son when he was a little boy and prepared him for bed. I asked if he would like to do this now. At first he voiced concern that he might hurt his son, but he allowed me to bring him a bowl of water, a washcloth, and towels. I asked if he wanted me to stay, and he said he did not, but he wanted me to remain nearby “just in case.” He then proceeded to bathe his son, who died later that evening. At the wake, the father came up to me, smiled, and said proudly that his son died in clean pajamas. I do not believe that he will ever forget his son’s dying; he will, however, always have the memory that it was he who made certain that his child died in clean pajamas.
The nurse’s invitation to participate may not only be helpful to the patient’s family members and friends, it may also alleviate constant intrusion into the nurse’s work by these persons. By taking a few minutes to teach someone how to perform a simple procedure for the patient, the nurse can avoid repeated requests for service. Family and friends are often concerned about the cessation of feeding during the end stage of the dying process. Feeding, after all, is one of the ways we show others that we love them. This is particularly true in some cultures, notably so in the Acadian ethos. By allowing family members and friends to crush ice or Popsicles and place small bits on the patient’s lips, the nurse can both provide immediate relief from the strain of watching a loved one die and create good memories for the survivors to draw on following the death.
Sometimes participation of this type is not feasible, especially in crowded critical care areas. Placing a cool cloth on the patient’s forehead, wiping the patient’s mouth, and moistening the patient’s lips, however, are small tasks that, although perhaps unnecessary or relatively unimportant, allow family members and friends to participate in caring for their loved one.
Allowing Time to Pass
In my experience, most participants want to know when death can be expected to take place. When they ask, it is useful for the nurse to acknowledge that their wish to know is normal and then draw attention away from the death itself to the process leading toward death. When cure is the goal, it is the professional who determines both the procedures to be done and the timing of these procedures. When death is imminent, it is the dying person who controls the process. Focusing on what is transpiring at the moment with the patient as well as those who wait with him or her, rather than the approximate time of a future event, helps to keep the drama flowing smoothly. One way in which the nurse can do this is by facilitating communication between the patient and his or her family and friends.
It is important that the nurse encourage those gathered in attendance to talk to the patient rather than about him or her, even if the patient is nonresponsive. This is a time to reminisce about events that were important to all the participants. It is a time to forgive past omissions or commissions, a time to say thank you, a time to express the meaning that someone has for another. As death approaches, the technique of co-breathing can help family members, friends, and patient alike. The nurse can encourage those around the bedside to breath in unison with the patient. If his or her breathing is rapid, co-breathers can breathe with every other breath instead.
Allowing for Unpredictability
Predicting when death will occur is often haphazard at best. I have often left a patient’s bedside “knowing” that I have just been with him or her for the last time before death only to return later that day or even a week or two later and find him or her still alive or even improved. I remember clearly one night when a patient’s parents, nurse, and I concurred that the end was near. I sat with the young man’s parents that night as we watched his breathing grow more and more labored and irregular. Just as dawn began to break, he suddenly opened his eyes, looked out the window, and asked me why I was still at the hospital. I have to admit that I was at a loss for words.
Similarly, I have experienced the shock of learning that someone died when I thought that person’s death was days, weeks, or even months away. In the early months of my work with AIDS patients, I remember, I was surprised when a physician asked me if I thought a particular patient’s death was imminent. It was then that I learned that dying is definitely not an exact science.
Chapple (1999), then, suggests that health care professionals in acute care settings need to apply new rules when death is imminent. From a sociological perspective, the shift in drama requires a shift in roles as well (Brabant 2001). These new roles include the nurse as director, the nurse as educator, and the nurse as role model. The shift in drama also includes new roles for the patient and his or her family members and friends.
The Nurse as Director
It is important that nurses plan ahead as much as possible. Locating available space for backstage use is best done prior to need, not as the result of need. Some hospitals have “family rooms” for this purpose, but these areas are usually at a distance from patients’ rooms or lack essential privacy. Nurses can alleviate the pressure of having to cope with disruptive behavior on the floor or in a critical care area, and/or the embarrassment of trying to use a particular backstage space at the wrong time, by knowing in advance if there is a patient room that is not occupied that shift, by having a screen available to create a private area in the waiting room
or at the end of a hall, and by establishing consensus among staff on when or if the nurses’ lounge is available.
Nurses should become acquainted with the members of the hospital’s social service and/or pastoral care staff. In an event-oriented drama, patients and/or their family members are referred to these areas of the hospital for services just as they are transported to particular areas for specific procedures (e.g., X rays, lab work). The focus in the event-oriented drama is on getting a task accomplished. Family members may simply be told where to go in order to meet with someone to discuss some issue, such as outpatient care. In this situation it is the department and its service, not the specific person with whom they meet, that is important. In the process-oriented drama, the focus shifts, and continuity is important. When the nurse can say that he or she has asked a particular person from social services or pastoral care to come by in order to talk with a family member about some of the things the family member asked about earlier, the interaction becomes more personal. This support person may have only suggestions to offer, not answers, but he or she also will have time to sit and talk with the patient’s loved one for a few minutes, whereas the nurse may not.
The Nurse as Educator
In the past, most people experienced the death of someone they knew while they were still in childhood. Today, it is not uncommon for an adult to have had no prior experience with death. When this is the case, the nurse may need to serve as death educator. What are the signs of approaching death? What will take place as death occurs? What behavior is appropriate? What will happen following the death itself? The things the nurse says at this time, and the way in which he or she says them, can have critical impacts on the patient’s family members and friends, both at the time of death and thereafter.
Although we often use the words death and dead in ordinary speech (as when we talk about someone being a deadbeat or having a death wish, or say, “I laughed so hard I almost died”), we often use euphemisms when death actually occurs (e.g., “He passed away”; “She left us”). One such expression traditionally used by nurses is “The patient expired.” The use of such euphemisms by health care professionals is detrimental for at least two reasons. First, it supports the notion that death is a failure, something that should not be mentioned openly. It thus adds to the stigma surrounding death. Second, the use of euphemisms may lead to some confusion about what has actually taken place. On occasion people have come to me in a very distraught state following the death of a loved one because they were concerned that their loved one felt abandoned or suffered physically while in the morgue. Statements such as “They will be taking John down to the morgue to await the people from the funeral home” are misleading. John is dead. The professional should make that clear by saying, “John’s body will be taken to the morgue.”
Finally, the first task of grief work is to acknowledge that the person is dead. This does not mean that one accepts the death as all right, just that one acknowledges that the person is no longer alive. The nurse, as society’s representative, can promote this acknowledgment by using the correct words.
The Nurse as Role Model
The nurse not only directs the drama, he or she provides the model for all others who take active roles. In touching the patient, the nurse shows by example how the patient’s family members and friends may proceed. If the nurse treats the patient as an object, those who witness this will probably do so as well. If the nurse treats the patient as a human being with rights to dignity and respect, those in attendance will often follow suit. If the nurse can express his or her feelings of regret, others may feel permission to do so as well.
As death approaches, the nurse’s roles as director, educator, and model may commingle with his or her role as coparticipant. The relationship between the nurse and his or her patient is coming to a close. It is time to give the patient permission to die, and the nurse may be an important person in this ritual. He or she may also use this opportunity to model this behavior for others. The moment of death may well be the most difficult time for the nurse, for it is at this time that he or she must step aside and at he same time set limits for the behavior of others.
It is not always as easy as it sounds for the nurse to step aside. I have to admit that I have often resented relatives who appear just before death occurs and take center stage with last-minute reconciliations when I was the one who cared for their loved one during the long weeks or months that preceded the death. I have to remind myself that this is, after all, what I had hoped would take place. I need to step aside and give others the center stage.
At the same time, it is the professional who must set the limits for final good-byes. Removing any tubes that may still be present, wiping away secretions that may have occurred in the last moments of life, and arranging the linens all attest to a shift in the drama. Allowing those in attendance time with the body is important. The nurse, however, must set limits, in terms of both behavior and length of time. The nurse’s work in educating the patient’s family and friends and modeling behavior toward the patient prior to the death can often make this much easier for everyone concerned.
Current debates between hospice professionals and palliative care professionals represent the emergence of a new arena for end-of-life care (Hunter 2001). In a joint project, the National Hospice and Palliative Care Organization and the Center to Advance Palliative Care are now considering three possible models: (a) hospice as an independent entity in contractual relationship with one or more hospitals, (b) hospice as a program within a hospital or medical center, and (c) hospice as a consultant/support
for palliative care in a hospital (Beresford 2001). The drama is changing, scripts are being rewritten, and roles are shifting. Ethical considerations, legal issues, and the costs of care all play a part in the emergence of this new drama. In the meantime, awareness of the need to shift from an event-oriented drama to a process-oriented one, and the impossibility of putting on a full-scale opera on a small stage with no rehearsal or supporting cast, allows nurses to facilitate end-of-life care for patients and their family members and friends.
It is of utmost importance that medical personnel, particularly nurses, understand that they need to assume new roles with new obligations when the drama shifts from acute care to end-of-life care. Of equal importance, however, is the willingness of the patient and his or her family and friends to assume new roles with new obligations as well. As with acute care personnel, this requires planning.
First, every potential acute care patient (and that includes all of us) should have a living will that clearly outlines his or her wishes in the event that death is likely to take place in the near future due to an incurable injury, disease, or illness. A living will, however, may not anticipate all circumstances, and so a second component of last directives is critical. This includes the establishment of a durable power of attorney, which authorizes someone else to make end-of life decisions for the patient if the patient is no longer capable of making these decisions. The selection of this person requires some thought. It is important that the person selected is one who is both capable of assuming and willing to assume the role of advocate. Such an individual needs to be able to shift from a supporting role to a lead role in the drama, to ask questions, to assess and reassess the situation, and to make decisions that may or may not be popular ones. He or she should be able to build a cast of supporting actors (e.g., social services, pastoral care) to assist him or her in carrying out this new role. This position is not for the timid or unassertive, no matter how close the friendship.
Finally, it is important that the patient’s immediate family members are aware of the patient’s wishes and are willing to support both those wishes and the person with the durable power of attorney. All of this requires that the patient be willing both to contemplate the issues around his or her own death and dying and to draw others into a discussion of these issues. Given the death taboo in our society, this is no easy task.
Head (2000:5) suggests that when a patient enters hospice care at the last moment, the patient and his or her family and health care team should hold realistic expectations, and the parameters for their satisfaction must be redefined. This is good advice for patients, their families and friends, and professionals in the acute care unit as well. It is not often possible to produce a full-scale end-of-life opera. Such a production takes time, space, and a large cast of actors. It may, however, be feasible to produce one or more arias. This in itself is quite an accomplishment when all is said and done.