Stresa, a small town on the shores of the Lago Maggiore, about one hour north of Milan, Italy, was the site of the Third Research Forum of the European Association for Palliative Care (EAPC). From June 3 through 6, 2004, researchers from all across Europe, as well as investigators from North America, Australia, Japan, and Israel, gathered to review the state of palliative care research and set an agenda for the future. The setting was bucolic and tranquil; the official language was English; the accents were diverse; the accommodations were grand; the ambiance was intimate and insouciant; the dinners were elegant; the dress was stylish; the organization was impeccable; and the scholarship was of the highest level. All this, perhaps, was to be expected of an EAPC event, hosted by an Executive Scientific Committee and Research Committee headed by Franco De Conno of the Instituto di Tumori of Milano, Italy, and his colleagues. What was unexpected, however, was the prominence of research on psychosocial, existential, and spiritual aspects of palliative care at this critically important, international, palliative care research forum. Clearly, 2004 marks an important milestone for the entry of research in psychosocial and existential issues into the mainstream of academic palliative care. Palliative and Supportive Care, having just successfully completed its inaugural year of publication in 2003, is now extraordinarily and uniquely well placed to be the preeminent international palliative care journal for research in the psychosocial, existential, and spiritual aspects of palliative care.

Objectives: To validate the QUAL-E, a new measure of quality of life at the end of life.

Methods: We conducted a cross-sectional study to assess the instrument's psychometric properties, including the QUAL-E's associations with existing measures, evaluation of robustness across diverse sample groups, and stability over time. The study was conducted at the VA and Duke University Medical Centers, Durham, North Carolina, in 248 patients with stage IV cancer, congestive heart failure with ejection fraction ≤20%, chronic obstructive pulmonary disease with FEV1 ≤ 1.0 l, or dialysis-dependent end stage renal disease. The main outcome measures included QUAL-E and five comparison measures: FACIT quality of life measure, Missoula-VITAS Quality of Life Index, FACIT-SP spirituality measures, Participatory Decision Making Scale (MOS), and Duke EPESE social support scales.

Results: QUAL-E analyses confirmed a four-domain structure (25 items): life completion (α = 0.80), symptoms impact (α = 0.87), relationship with health care provider (α = 0.71), and preparation for end of life (α = 0.68). Convergent and discriminant validity were demonstrated with multiple comparison measures. Test–retest reliability assessment showed stable scores over a 1-week period.

Significance of results: The QUAL-E, a brief measure of quality of life at the end of life, demonstrates acceptable validity and reliability, is easy to administer, performs consistently across diverse demographic and disease groups, and is acceptable to seriously ill patients. It is offered as a new instrument to assist in the evaluation of the quality and effectiveness of interventions targeting improved care at the end of life.

Objective: Although terminal sedation (TS) has generally been seen as legal and ethically acceptable, ethical and moral issues remain. Little is known about the use of TS in general clinical practice and about how TS is viewed by physicians, given moral and ethical concerns. The objectives of this study are (1) to describe attitudes of physicians regarding terminal sedation; (2) to explore demographic characteristics, such as age, gender, subspecialty, and number of years in practice, that might be related to the use of TS; and (3) to compare physicians who have and have not used TS on the degree to which they view TS as moral and consistent with their professional and personal ethics.

Methods: An anonymous survey of New Jersey physicians was conducted at the University of Medicine and Dentistry of New Jersey–School of Osteopathic Medicine. A 39-item questionnaire assessing general opinions about, experiences with, and religious, moral, ethical attitudes toward TS and other end-of-life treatments was utilized.

Results: A majority of physicians (73%) had used TS for a patient. Most (93%) said there were circumstances under which they would use TS. With regard to questions about whether TS would be “immoral,” “would violate my religious beliefs,” “would violate my professional ethics” and “is inconsistent with the physician's role of preserving life,” approximately 55% of those who have used TS disagreed; for those who have not used TS, approximately 35% disagreed.

Significance of results: Professional education and opportunities for discussion appear necessary to help reconcile the conflicts raised in the use of this end-of-life treatment strategy.

Objective: Although success rates for bone marrow transplantation (BMT) continue to improve, there is still a high level of morbidity and physical and emotional distress associated with BMT. To date, limited research has focused on the assessment of and screening for specific psychiatric disorders of patients facing BMT. This is especially true with regard to identifying adjustment disorder (AD), despite the fact that AD is the most prevalent psychiatric diagnosis in cancer patients.

Methods: A sample of 95 BMT patients were interviewed using the Structured Clinical Interview for Diagnostic and Statistical Manual of Mental Disorders, 4th edition (SCID) and completed several commonly used self-report instruments to determine if these tools could be used to identify patients with adjustment disorder in need of further assessment and intervention.

Results: Of these patients, 34.7% were diagnosed with adjustment disorder, 11.6% with major depression, and 5.3% with generalized anxiety disorder. The instruments were not found to be predictive of AD. However, the results of a regression analysis showed that the Social Subscale of the Functional Assessment of Cancer Therapy–General (R2 Δ = 0.04, F = 4.30, p < 0.05) was a significant predictor of adjustment disorder.

Significance of results: We conclude that there is little efficacy in using existing scales for detecting adjustment disorders in cancer patients undergoing bone marrow transplantation, and that other tools for identifying patients with adjustment disorder who might benefit from counseling are needed.

Objective: Screening for adjustment disorder (AD) in cancer patients presents a significant clinical challenge. As seen in Part I of this research, conventional, existing measures are rather poor at detecting this most common of psychiatric diagnoses. Bone marrow transplantation (BMT) has a high level of morbidity that can cause significant stress for patients faced with the procedure.

Methods: A sample of 95 BMT patients completed a semistructured interview and a novel self-report instrument, the Coping Flexibility Scale for Cancer (C-Flex), to determine if it could identify patients with adjustment disorder in need of further assessment and intervention.

Results: The screen yielded four factors but was not predictive of AD. However, the C-Flex was significantly related to the presence of any disorder (r = −0.44, p < 0.001) in this sample. In addition, Factor I of the screen was found to be correlated to the presence of any diagnosis (r = −0.44, p < 0.001) and to have adequate sensitivity (81.63%) and specificity (76.09%).

Significance of results: Either because of problems with the scale or the amorphous nature of the AD category, or both, rapid identification of patients with this common problem has proven to be elusive.

Objective: Understanding the construct of hopelessness in the context of a life-threatening or terminal illness is a complex and challenging undertaking. The objective of this study was to examine the construct of hopelessness in patients with advanced AIDS by examining the structure of the Beck Hopelessness Scale in this specific population.

Methods: For the past three decades, the primary measure used to study hopelessness in a variety of populations has been the Beck Hopelessness Scale. Several factor analytic studies have been published using this scale, with studies of nonclinical samples typically describing a two-factor model (optimism and pessimism), whereas clinical samples have consistently generated a third factor (lack of motivation to make changes). We used confirmatory factor analysis to analyze two data sets in patients with AIDS.

Results: Confirmatory factor analysis of the Beck Hopelessness Scale in two samples of patients with far advanced AIDS revealed a clear superiority for a three-factor model.

Significance of results: The Beck Hopelessness Scale has unique characteristics when applied to a terminally ill population. The implications of these results for studies of terminal illness are discussed.

This article reviews literature about the impact of advanced breast cancer on children and families. It is clear that the adjustment of the family is influenced by disease stage and maternal adjustment, the needs of the particular child relating closely to their developmental stage. Interventions with children and families to promote adjustment when a parent has advanced cancer are also discussed, including implications for clinical practice.

After years of neglect, care at the end of life is receiving increasing attention and concern. It is then that the body is consumed by a progressive and mortal illness, and the person must cope not only with the bodily symptoms, but also with the existential crisis of the end of life and approaching death. As the body suffers, the mind is indeed “commanded … to suffer with the body,” as Shakespeare so well described. Thus, suffering near the end of life encompasses both the mind and the body. Providing optimal symptom relief and alleviation of suffering is the highest priority. However, evidence suggests that we continue to fall far short of this ideal (American Society of Clinical Oncology, 1996; Cassem, 1997; Cassel & Foley, 1999; Carver & Foley, 2000). Although pain management guidelines have been the most widely disseminated, we know that many patients continue to suffer not only from pain, but other troubling physical symptoms in their final days (American Nursing Association, 1991; Carr et al., 1994; American Pain Society, 1995; American Academy of Neurology, 1996; American Board of Internal Medicine, 1996; Ahmedzai, 1998). Despite clear advances in the identification and treatment of psychiatric disorders, we continue to underdiagnose and undertreat the debilitating symptoms of depression, anxiety, and delirium in the final stages of life (Carroll et al., 1993; Hirschfeld et al., 1997; Holland, 1997, 1998, 1999; Breitbart et al., 2000; Chochinov & Breitbart, 2000). And, beyond these physical and psychological symptoms, we fall even shorter of our goals of alleviating the spiritual, psychosocial, and existential suffering of the dying patient and family (Cherny & Portenoy, 1994; Cherny et al., 1996; Fitchett & Handzo, 1998; Karasu, 2000). And this is in spite of the ethical imperative “to comfort always” (Pellegrino, 2000).

In this communication, we report an acute leukemia patient who developed conversion disorder mimicking the adverse effects of high-dose cytosine arabinoside (Ara-C) treatment after the patient received high-dose Ara-C treatment.

A 21-year-old woman, with acute recurrent leukemia after bone marrow transplantation, received high-dose Ara-C treatment and 10 days later was referred for psychiatric consultation because of an abrupt onset of convulsion. On neurologic examination, she showed convulsion of all the limbs without loss of consciousness. All limbs looked paretic; however, tendon reflexes in all limbs were normal and pathological reflex was not recognized. When her hand was dropped onto her own face, it fell next to her face but not on her face. Laboratory data were unremarkable. She had no history of psychiatric illness or drug or alcohol abuse.

The patient explained that she knew about the recurrence of her own leukemia and the news of the death of a close friend due to leukemia at the same time, which was a shocking event for her, focusing her attention on her own fears of dying from the same disease.

Conversion disorder in cancer patients is not common; however, appropriate diagnosis is very important to avoid inappropriate examinations and treatments.

In leukemia patients receiving chemotherapy, various kinds of signs and symptoms may develop due to the adverse effects of chemotherapy and/or infection. Therefore, conversion disorder might be overlooked and inappropriate treatment and examinations might be performed. Clinicians should consider conversion disorder in the differential diagnosis when patients develop unexplained neurological symptoms.

Every year, a new cache of medical students is baptized into this ageless art, and with this distinction comes a ceremonial distribution of the white coat. I was exuberant when I received mine—how beautiful! The thick cords of fabric are so neatly woven, reminiscent of chain mail armor worn by Lancelot and his peers…. Yes, this is a suit of armor, my impervious battle dress against the foes of Disease and Illness. It is replete with knowledge, seething with confidence, keen in choice of diagnosis and treatment—a great garment of ritual and power no different than Merlin's robe or the shield of Constantine. The brilliant white threads reflect purity of heart and clarity of mind, illuminating the nature of human condition. With this armament, we saw ourselves as the natural optimistic extension of our time—purveyors of medical manifest destiny. I was confident a true understanding of humanity hinged on my education. What an astonishing machine, this Man creature! So intricate, so functionally efficient, so synergistic, the ultimate holistic wonder. And how very reasonable for such a pinnacle in the scheme of natural history to have insight regarding his mechanics, that he might tinker and prod, cut a bit here and there, a tincture of chemical now or again, polishing up the imperfections and peccadillos inherent in producing 6,000,000,000 copies of something, anything.

Patrick began writing a journal in 1998 just before he retired from paid work as a result of effects of Multiple Sclerosis. He continued to write irregularly over the subsequent 5 years until he moved into a long-term care facility. He used the journal as a writing exercise, but lived with the frustrations of having to rely upon the computer first to translate his spoken words into written text and then to speak those words back to him. Although Patrick was legally blind, a wheelchair user, and lived with debilitating fatigue, he never let himself be defined by those features. Rather it was his imagination, humor, and quality of thought that captured those around him. These journal excerpts document his reflections on “life, the universe, and everything” in the words of Douglas Adams, a favorite author. The poems were written with the assistance of scribes while Patrick lived in a care facility. Patrick died on January 11, 2004 of pneumonia, having embraced the process of dying as he had his living over the previous 45 years. His family, including his research and life partner, Deborah Stienstra, and their children Rebecca and Cailum, celebrate his life and contributions.

Yizkor Minyan: Memorial suite.

Clinical update: Literature abstracts.

Calendar of events.