Psychosocial Interventions in End-of-Life Care

The Hope for a "Good Death"

Peggy Gordon, Peggy Sturman Gordon

• Publisher: Routledge
• Year: 2015
• Print ISBN: 9781138086098
• eBook ISBN: 9781317631958
• Edition: 1
• Topic: Psychology
• Subtopic: Ethics in Medicine
• Index: Psychology

The concept of a "good death" has been hotly debated in medical circles for decades. This volume delves into the possibility and desirability of a "good death" by presenting the psychosocial measures of care as a crucial component, such as religion, existentialism, hope and meaning-making. The volume also focuses on oncologic psychiatry and the influence of technology as a means to alleviate pain and suffering, and potentially provide relief to those at the end of life. Such initiatives are aimed at diminishing pain and are socially bolstering and emotionally comforting to ensure a peaceful closure with life as opposed to a battle waged.

Utilizing the most recent information from medical journals and books to present the latest on healthcare and dying today, this volume crosses the boundaries of thanatology, psychology, religion, spirituality, medical ethics and public health.

Part I
Aspects of Death and Dying

1 Western Attitudes to Death

A good death was more the norm prior to the explosion of technology in the 20th century, which fractured, not only atoms, but also families, neighborhoods, extended families, and communities. Where before an entire community routinely participated in the rituals of preparing a body for burial, in wakes and funerals, death today has been excommunicated from society and become a mystery to our contemporary population, hidden away in dark, cold basements.

1.1 Histories of Death: Ariès and Kellehear

In the past few decades, medical science has rendered obsolete centuries of experience, tradition, and language about our mortality and created a new difficulty for mankind: how to die.

(Atul Gawande, 2014, p. 158)

Two major views of the history of death and dying from ancient times to the social responsibilities of end-of-life care today were written by British sociologist Allan Kellehear and by the French social historian Philippe Ariès. Kellehear’s A Social History of Dying (2007) presents a major review of the human and clinical sciences literature about human dying, an historical approach that places recent dying and death in broader historical, medical, and global context. Ariès initially wrote Western Attitudes Toward Death: From the Middle Ages to the Present (1974) as a series of lectures delivered at Johns Hopkins and in 1984 incorporated it into the book The Hour of Our Death. Ariès presented the development of Western attitudes to death in terms of four stages of historical development: the Tamed Death, One’s Own Death, Thy Death, and Forbidden Death, which roughly match up with Kellehear’s specification of eras in the history of death.

Kellehear began his historical account of death and dying in the Pastoral Age, the period he designated as occurring approximately between the Stone Age and the 15th century. Early on, death and dying came very suddenly and humans in this prehistoric era had no way to prepare for it. Evident from cave drawings of burial rites, humans gradually became personally aware of danger and began to inquire about life after death, preparing for an otherworld journey. Kellehear thereby identified one of the most important aspects of death which began in the Stone Age, that of its anticipation. The dying experience became a post death activity that was dependent upon the beliefs and behaviors of the survivors (Kellehear, 2007, pp. 27–9). The awareness of mortal illness led to exploration of ways to prevent mortality that resulted in the prehistoric suggestions of healing and sorcery, and eventually, centuries later, to biomedical technology and pharmacology (p. 49). Self-awareness of oncoming death, then, became the first feature of a good death (p. 87) that began to be recognized after World War II, to be studied by Glaser and Strauss and to become an indicator of positive psychosocial well-being.

The experience of death in the later Pastoral Age differed by virtue of the dying experience being predictable and anticipated, caused by infectious diseases that led to a gradual dying process and allowing the peasant or farmer to participate in his or her death. Such a death, wherein the dying person was able to prepare for his death with the assistance of his family, friends, and his community, was a good death, the result of a life well lived (Kellehear, 2007). This good death of peasants and farmers evolved as the industrial revolution and warfare began to transform society and healthcare.

Ariès’s first period of death, Tamed Death, began in traditional peasant societies beginning in the early Middle Ages and lasted until about the 10th century. Then, as also described by Kellehear, a dying person knew and accepted that death was near and acted as the master of ceremonies over his or her own approaching death. The dying person presided over his or her last days, making farewells and seeking pardons, essentially repeating the rituals that he or she had witnessed as a younger person. Such rituals of dying and death, a public event that included the entire community, served as a public confirmation of humanity against an indifferent, callous Nature. These rituals were important, practiced ceremoniously, and conducted openly and freely, because death was known but not feared yet.

Ariès distinguished a change in death attitudes in the later Middle Ages, around ad 1000, wherein greater emphasis was placed on the significance of the moment of death and on the art of dying. Ariès referenced the pictorial art of the time, Ars Moriendi, which depicted various death scenes, such as the last judgment or scenes taking place in the bedchamber of the dying. Ariès called this historical stage of dying One’s Own Death. The old collective rites of passage were still conducted, but with a new consciousness of the significance of the dying person as an individual (Boyd, 1977).

Ariès observed still another shift that began around the 16th century and is shown in the pictorial art as the Dance of Death, picturing death raping the living. Ariès saw this as a departure from the natural order, a violent disruption of daily life as it heretofore had been. The family of the dying person was then expected to do more, to take over the responsibility for the rituals of death from the dying person. The family was required to show and feel grief, eventually evolving into the hysterical mourning of the 19th century. By the advent of the 17th century, Thy Death, the understanding that such a death is one which happened to another, became emotionally exhausting to those who were charged with assuming the responsibility for the conduct of the death and of responding to it with feeling. As the family attempted to spare the dying person an undue ordeal, they also sought to spare themselves by avoiding strong emotion in the presence of death. This is Ariès’s notion of the Forbidden Death, an attitude to death that sought to conceal its reality.

Ariès characterized the Wild Death, wherein no one had the right to become emotional except in private, secretly, because overt sorrow inspired repugnance rather than pity; such evident sorrow was considered too morbid and was a sign of mental instability or of bad manners. Within the family, one hesitated to show emotion for fear of upsetting the children (Ariès, 1974). To make this point, Ariès referred to the work of sociologist Geoffrey Gorer, as showing how, in the 20th century, the taboo of death replaced that of sex as the principal forbidden subject—something to withhold from the children: “Death has become more and more unmentionable as a natural process” (Gorer, 1955, p. 50).

By the 19th century, developments in the biological sciences revealed the relationship between disease symptoms and internal organs. Next, death came to be understood as arising from diseases or anomalies within the body. Death was made visible to the doctor, who tended to the patient and displaced religion and priests as the main attendants at the deathbed (Kaufman & Morgan, 2005). Death became an aspect of life. At that point, urban elites became prone to the degenerative diseases of aging, heart disease, and cancer, which engendered the management of complex economic, medical, and legal issues.

By the 20th century, the Forbidden Death had evolved into denial of the reality of death by ceding responsibilities to the hospital, where death took place quietly with the individual often under sedation and perhaps not even realizing what is occurring as he was surrounded by professionals (Boyd, 1977). Thus is achieved the “acceptable style of living while dying” (Ariès, 1974, p. 89). Ariès represents this modern death as the Wild Death, an inhumane and solitary way of dying, wherein both the family and dying person are outsiders. The doctor and hospital team are

the masters of death…who try to obtain from their patient an acceptable style of living while dying…. An acceptable death is a death which can be accepted or tolerated by the survivors. It has its antithesis: the embarrassingly graceless dying, which embarrasses the survivors because it causes too strong an emotion to burst forth; and emotions must be avoided both in the hospital and everywhere in society.

(Ariès, 1974, p. 89)

The rise of the city, accompanying the advent of the industrial revolution, produced a change in social relations: where pastoral societies were close-knit and community-oriented, urban societies “occurred in a context of mass population” (Kellehear, 2007, p. 147). Anonymity became a major cultural phenomenon in cities that contained a large range of communities. Mass migration combined with occupational diversification to place additional pressure on personal abilities to negotiate the day-to-day meanings and social and economic transactions. These sorts of transactions altered the nature of the good death and gave birth to the concept of what Kellehear called the Well-Managed Death. The awareness of dying was a major factor in both the good death and the well-managed death, but the well-managed death required confirmation by specialized others, such as medical professionals, who were able to manage the final tasks of the exit.

Death and dying became increasingly hidden during the course of the 20th century. The accustomed natural death “evolved from being respected to being unnatural and shameful, from being the culmination of a life to an unwanted interruption of existence” (Kearl, 1996, p. 338). Death began to be denied in order to avoid its unpleasantness while families usurped their loved one’s autonomy in an effort to shield them, thereby undermining the ability to die well.

1.2 The Rise of the Institutional Care of the Dying

Kellehear made an important distinction between dying and death, particularly in today’s modern world. Today, deaths occur in institutional settings, while “‘dying’—as a shared set of overt social exchanges between dying individuals and those who care for them—is increasingly unrecognised…has become…severed from its earlier biological, psychological and interpersonal moorings” (Kellehear, 2007, p. 253). Nowhere was this more evident than in the medical settings of hospitals where the thrust of managing death came to be controlled through institutionalization, medicalization, and bureaucratization. The organization of work by the hospital staff assumed greater importance than that of the dying individuals in their care. The lives of dying people in hospital were tightly controlled and became meaningless, isolated, and powerless, and devoid of autonomy (Hart et al., 1998). Social processes and events of the past, as noted by Ariès (1981), “were once spoken of and conducted more openly and freely, and those who were dying and grieving were far less isolated” (p. 67). The routinization of managing death contributed to the eventual establishment and success of hospice.

In the 1960s, sociologists joined the psychologists in studying death and dying within hospitals. Glaser and Strauss actually spent time in hospitals and published two books that contributed some important concepts about the dying process. In Awareness of Dying (1965) they documented what dying people knew or suspected about their impending death and the four awareness contexts and their influence on the dying process (see page xx). In their 1968 book, Time for Dying, Glaser and Strauss identified the dying trajectory, an objective picture of the good or appropriate death that was marked by hospital staffs’ negotiation and management of critical events as the patient’s status changed in progression towards death (Hart et al., 1998; Doka, 2007, p. 20). Subjectively, when professionals were confronted by a patient, Glaser and Strauss noted “fairly rapid estimations” about whether or not and how that individual might die (Corr et al., 1999, p. 244). Professionals organize their work and ill persons are treated in different ways on the basis of these estimates, such as bed assignment or use of more or less aggressive intervention. The importance of dying trajectories may then involve two elements of the same patient: “the disease processes internal to ill persons and important elements of assessment, communication, and interaction between dying persons and their care providers” (p. 244). Deaths which occur in an untimely manner present certain difficulties for the routinization and bureaucratization of staff and families.

David Sudnow was an ethnologist who studied the social organization of the modern hospital, that major setting of dying in our society (Sudnow, 1967, p. 2). Sudnow’s experience of the modern medical management of death and dying exposed the routinization of dying and death, wherein the value of organizational efficiency was held as far more important than that of human dignity. He explained how social class affected the choice and execution of real procedures relevant to healthcare and dying in a charity hospital. He introduced the concept of social death that referred to his observation of family and staff often treating many comatose patients, technically alive, as if they were dead (Doka, 2007, p. 20). Sudnow also exposed the social inequality in the process of dying. Sudnow’s work revealed that healthcare staff opted to administer their caregiving based on the patient’s perceived social value: patients with low perceived social worth were much less likely to be resuscitated aggressively than patients with a high social value.

The stage theory presented in the writing of Elisabeth Kubler-Ross (On Death and Dying, 1969) was also developed within the sphere of the medical model hospital setting, and likewise highlighted the lonely, dehumanized isolation of dying patients. In it, Kubler-Ross proposed that dying people progressed through identifiable stages (denial, anger, bargaining, depression, acceptance) as they approached death and that each of the stages was characterized by observable behaviors and emotions. The final stage of dying, acceptance, was characterized by the dying person’s acceptance of the end of life and became the goal of those who were providing their care; the concept of acceptance, along with awareness, of dying later became part of the characterization of a good death (Zimmermann, 2012). In spite of notably weak methodological foundations, Kubler-Ross’s work was well-received by the general public as a welcome sort of field map for grieving caregivers and survivors who saw it as a guide to making sense of the process of dying of their loved ones.

Within this scenario, the modern hospice movement was founded in 1967 at St. Christopher’s Hospice in Sydenham, outside of London, where Dr. Cicely Saunders developed her approach to managing pain and all other needs of dying patients and their families. The inpatient model hospice focused largely on those patients with advanced cancers. Because the identified trajectory of a disease like cancer makes it easier to predict death within weeks or months, pain may be managed with the use of opioids that allows the patient the possibility of living out the end of life without suffering. The hospice was staffed by an interdisciplinary team of medical, spiritual, social work, and psychological professionals.

1.3 The Advent of Modern Death Awareness

Dying is not only a biological affair, but a human one. The [death] movement has underscored the importance of healing the humanity wounded by illness and oncoming death…. Technology and competence have to be infused with compassion and benevolence and that life is not just a matter of length but of depth and quality as well.

(Feifel, 1990, p. 540)

The American psychologist, Herman Feifel, broke the taboo on the subjects of death and dying, making them legitimate subjects for scientific, scholarly study. Feifel organized and chaired the first symposium on the subject, The Concept of Death and Its Relation to Behavior, in 1956 at the annual meeting of the American Psychological Association. That year, he became the first individual to be awarded a research grant from the National Institutes of Mental Health (NIMH), to study death attitudes. Feifel became known as the founder of the death psychology movement, publishing Meanings of Death in 1959, which became a classic in the field. He asserted that developments of an impersonal technology alienated society from traditional institutional and community supports, such that grief and dying traditions have been de-ritualized (Feifel, 1977a, p. 5). T...

Table of contents

• Cover
• Title
• Copyright
• Contents
• List of Figures
• Series Editor Introduction
• Introduction
• Part I Aspects of Death and Dying
• Part II Psychosocial Interventions to Promote a Good Death
• Part III Characterizing the Concept of the Good Death
• Index