Response to Suffering of the Seriously Ill Child: A History of Palliative Care for Children.

Most pediatric clinicians aspire to promote the physical, emotional, and developmental well-being of children, hoping to bestow a long and healthy life. Yet, some infants, children, and adolescents confront life-threatening illnesses and life-shortening conditions. Over the past 70 years, the clinician's response to the suffering of these children has evolved from veritable neglect to the development of pediatric palliative care as a subspecialty devoted to their care. In this article, we review the history of how clinicians have understood and responded to the suffering of children with serious illnesses, highlighting how an initially narrow focus on anxiety eventually transformed into a holistic, multidimensional awareness of suffering. Through this transition, and influenced by the adult hospice movement, pediatric palliative care emerged as a new discipline. Becoming a discipline, however, has not been a panacea. We conclude by highlighting challenges remaining for the next generation of pediatric palliative care professionals to address.

The death of Anna Katharina Ehmer: a case study in terminal lucidity.

Terminal lucidity, the unexpected return of mental clarity and memory shortly before the death of patients suffering from severe psychiatric and neurologic disorders, has raised the curiosity of numerous physicians and laypersons in the past. However, this peculiar phenomenon has received little attention in the recent decades. In previous publications, we have presented overviews of cases of terminal lucidity in various neurologic and psychiatric disorders. In this article, we highlight terminal lucidity in persons with mental disabilities, and focus on one of the most remarkable cases that have been reported. We provide biographical background information about the two principal witnesses who reported this case. It concerns the death of Anna Katharina Ehmer, a 26-year-old woman with severe mental disabilities who lived in an institution for people with mental disorders, and who had allegedly never spoken a single word during her life. Yet, she was reported to have sung dying songs for a half hour before she died. The case was reported by the head of this institution and by its chief physician. We consider it difficult to evaluate the authenticity of the case definitively in retrospect. Nevertheless, there are similar cases and a variety of other anomalous brain-related findings we consider worth investigating. Studies into such anomalous cases might improve our concepts of human brain functioning and of mental processing in persons with mental disabilities, and might be of special value for the dying, the bereaved, and caretakers.

Concept analysis of good death in terminally ill patients.

The purpose of this concept analysis of good death was to examine the attributes of a good death and explore the changes of the concept over time and its impact on terminally ill patients. The method used for this analysis was the Rodgers' evolutionary method. A literature search was completed using Medline Ovid and Journal Storage (JSTOR).The findings describe the evolution of the good death concept over time from the prehistoric era followed by premodern, modern, and postmodern times. In addition, information is presented about surrogate terms, attributes, antecedents, and consequences associated with good death followed by analysis and discussion of the findings. General attributes of a good death include pain and symptom management, awareness of death, patient's dignity, family presence, family support, and communication among patient, family, and health care providers.

The painless brain: lobotomy, psychiatry, and the treatment of chronic pain and terminal illness.

This article examines the use of lobotomy as a treatment for chronic intractable pain and reconstructs then-common perceptions of pain and of the patients who suffered from it. It delineates the social expectations and judgments implicit in physicians' descriptions of the patients, analyzing what was expected from such patients and how the medical establishment responded to non-normative expressions of suffering. I argue that the medicalized response to an expectation for normativity demonstrates the convergence between psychiatric and palliative interventions. Based on a historically informed perspective of psychiatric interventions in the field of pain medicine, I examine the use of psychiatric medications for pain syndromes today and evaluate the interface between depression, chronic pain, and terminal illness. While not detracting from the medical imperative to alleviate pain, I question the usage of social criteria and normative judgments in the clinical decision of how to treat pain. What normalizing social function does the use of psychiatric interventions in pain treatment fulfill? This approach leads to a reexamination of perceptions of dualism in pain medicine.

Dying at home: nursing of the critically and terminally ill in private care in Germany around 1900.

Over the last twenty years, 'palliative care' has evolved as a special nursing field in Germany. Its historic roots are seen in the hospices of the Middle Ages or in the hospice movement of the twentieth century. Actually, there are numerous everyday sources to be found about this subject from the nineteenth century. The article at hand deals with the history of nursing the terminally ill and dying in domestic care in the nineteenth century. Taking care of and nursing the dying was part of everyday routine in the nursing care as practiced by the deaconesses and sisters in those days. Mit der Seelenpflege bei den unheilbar Kranken und Sterbenden schufen die Kaiserswerther Diakonissen sich einen von Arzten unabhängigen Kompetenzbereich. Meine Analysen zur Privatpflege zeigen jedoch darüber hinaus, dass die in ihrer Aufmerksamkeit auf das Mutterhaus ausgerichteten Diakonissen auch in Leibespflege sehr viel unabhängiger von den Arzten zu agieren schienen als die freien Krankenschwestern. The article takes a look not only at the actual nursing activities but also at the relationship between the sisters and their patients and their relatives and the family doctor. On the basis of the recorded letters which the nurses wrote to the deaconess motherhouse in Kaiserswerth, it is also possible to analyze how the deaconesses communicated and reflected their actions at the deathbed.

Will to live.

Review of David Rieff's Swimming in a sea of death: a son's memoir. Rieff is the son of writer Susan Sontag.

[A place for the dying? The house for incurables in the old imperial city of Regensburg]. / Ein Platz für Sterbende?--Das Unheilbarenhaus in der vormaligen freien Reichsstadt Regensburg.

In 1821, a "House for Incurables" was established on the baths' island of the St.-Catharine's-Hospital in Regensburg. The patient registers and other administrative sources show that many incurables or terminally ill people were hospitalized and medically assisted there until their death. The choice of the persons who were to be admitted generated substantial conflict between representatives of spiritual and medical welfare. The institution was not only a house for the terminally ill. Some very old patients and patients with curable diseases also received care. Inspite of the order to care for patients with love and patience and inspite of precise hospital regulations, rooms, food, nursing and care were of poor quality and, at least occasionally, apart from the idea of care and assistance also the concept of custody seems to have been operating. In the middle of the 19th century, the owner of the building, the council of St.-Catharine's-Hospital, demanded its evacuation. An adequate substitute could neither be built nor found. Finally, it moved into a noble looking baroque suburbian villa, which had been used as a restaurant. The new building left much to be desired. In the end, the institution was changed into an almshouse for the elderly.

Historia y desarrollo de los Cuidados Paliativos en Andalucía / No disponible

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Retrieving the ars moriendi tradition.

North Atlantic culture lacks a commonly shared view on dying well that helps the dying, their social environment and caregivers to determine their place and role, interpret death and deal with the process of ethical deliberation. What is lacking nowadays, however, has been part of Western culture in medieval times and was known as the ars moriendi (art of dying well) tradition. In this paper an updated version of this tradition is presented that meets the demands of present day secularized and multiform society. Five themes are central to the new art of dying: autonomy and the self, pain control and medical intervention, attachment and relations, life balance and guilt, death and afterlife. The importance of retrieving the ancient ars moriendi outreaches the boundaries of palliative medicine, since it deals with issues that play a central role in every context of medical intervention and treatment.

An historical analysis of disclosure of terminal status.

PURPOSE: To examine the concept of disclosure of terminal status and trace its development and implementation over time. An individual's ability to make appropriate end-of-life decisions, exert some control over the place and manner of death, and prepare self and significant others for this loss depends on knowing that life is drawing to a close. ORGANIZING FRAMEWORK: An analysis of disclosure of terminal status was performed within the context of American social, political, and cultural history from 1930 to 1990. METHODS: A combination of manual and computerized search mechanisms was performed utilizing popular, nursing, medical, sociological, psychological, and thanatological literature from 1930 to 1990. The articles and books obtained through these searches were scanned and those articles and books that dealt with health care disclosure issues were selected. Works included in the review were 149 articles and 22 books. FINDINGS: A long-standing tradition of nondisclosure exists in the medical profession. Societal events in the 1950s and 1960s influenced individuals' perceptions of death, individual rights, and physician responsibility, and culminated in some change in this tradition in the 1970s. The magnitude of this change is unknown. Current practice has not been investigated. This topic is rarely addressed in nursing literature even though nursing care is influenced by physicians' practice. CONCLUSIONS: A tradition of nondisclosure prohibits patients from managing the end of their lives and making choices about their manner of death. Nursing care of terminally ill patients is compromised when patients are uninformed.