Objective: We reviewed our experience with 28 consecutive children referred for assessment and intervention. These were the children of patients with terminal cancer referred to the Palliative Care and Symptom Control Service. In all cases the dying parent was a biological parent.

Methods: Eleven parameters were assessed in each of 29 children and their incidence was calculated. The children and their parents were seen in a semistructured interview, together as well as separately. The parameters were: seeking reassurance (82), becoming a caretaker (79), inability to separate from parent (79), anger about feeling abandoned (68), despair (57), guilt (54), discipline problems, aggressive behavior (46), denial (39), blame of others (21), and fear for the child's own health (18).

Results: Our results suggest that children with dying parents manifest significant distress as well as a greater understanding of their parent's illness than is usually suspected.

Significance of results: Timely intervention by a child psychiatrist or other mental health professional with proven competence in working with children can help children to better cope with the death and dying of their parent and ameliorate the process of bereavement following the parent's death.

Because of our small sample, we cannot generalize about all of the findings. Further research is required to characterize the level of distress in the children and the long-term impact in their overall adjustment to life.

Objective: The aim of the present study was to evaluate competence development in palliative treatment, nursing and care in students (n = 25) undergoing a two-year postgraduate education program in palliation at a university college in Norway.

Methods: A questionnaire was handed out on five occasions during the education period.

Results: Results showed that the students rated their competence level as between some competence and good competence before entering the course. However, the competence level rose throughout the course period, and at the end of their education most of the students perceived themselves at a very good or extremely good competence level.

Significance of results: Statistically significant differences in all questions measuring competence in palliation were found on all occasions. Further studies are needed to confirm the effect of education on students' perceived competence development and whether it has a positive impact on clinical practice.

Objective: Hospice staff members have concerns about the appropriateness of enrolling terminally ill people in research studies. These concerns can have profound implications for the advancement of palliative and hospice care as they can impede the empirical investigation of interventions for improving the quality of life of patients with advanced disease. This survey study was designed to examine hospice staff attitudes, beliefs, and values about research with their patients and family members.

Methods: This study utilized a cross-sectional, anonymous survey design to measure hospice staff members' beliefs, attitudes, and values. The survey contained questions derived by hospice and palliative care experts from their experience and review of the literature. It was handed out at staff meetings and returned via mail. The survey contained 14 questions and was able to be completed in less than 5 min.

Results: A total of 225 participants (56.25% response rate) completed the survey and were included in the data analysis. Hospice staff members were largely supportive about the idea of conducting research with patients and family members (mean agreement of 4.08–4.44 on several perception items about research on a 1–5 scale). They also acknowledged a mixture of being protective of controlling access to patients (52% wanted to be the ones to approach patients) and not having enough time for research (59% either had no time or would be willing to spend no more than 10 min on research).

Significance of results: Although many of the opinions derived from the survey appear to indicate a willingness to embrace research in a hospice setting, significant barriers, especially time constraints and protective attitudes, remain. Educational efforts and firsthand involvement in the research process might be a useful first step in attempting to address these barriers and traditionally held beliefs against using hospice patients and families in research.

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.

Objective: This study assessed the prevalence of psychiatric disorder among a group of terminally ill cancer patients with or without a wish to hasten death (WTHD).

Methods: Consecutive patient referrals to a hospice inpatient unit, home palliative care service, and hospital palliative care-consulting service were recruited. A group of these patients (n = 56) consented to participate in a structured clinical interview (SCID) to identify the presence of psychiatric diagnoses. Patients were categorised into those with or without a wish to hasten death.

Results: Current major depressive episode and adjustment disorder were the most prevalent disorders in this group of patients. Patients with a high WTHD were significantly more likely to have a current major depressive episode compared to patients with no WTHD. Patients with a high WTHD were also significantly more likely to have a past major depressive episode compared to patients with no WTHD.

Significance of results: These results support the view that terminally ill patients with a high WTHD are significantly more likely to be suffering from a depressive disorder as assessed by a structured clinical interview. This has important clinical implications for those caring for dying patients who may make a request to hasten death.

Objective: The standards of care for patients at risk for or with a pressure ulcer in hospitals and nursing homes focus on prevention and ulcer healing using an interdisciplinary approach. Although not a primary hospice condition, pressure ulcers are not uncommon in dying patients. Their management in hospices, particularly the involvement of family caregivers, has not been studied. The objective of this study is to identify the factors that influence care planning for the prevention and treatment of pressure ulcers in hospice patients and develop a taxonomy to use for further study.

Methods: A telephone survey was conducted with 18 hospice directors of clinical services and 10 direct-care nurses. Descriptive qualitative data analysis using grounded theory was utilized.

Results: The following three themes were identified: (1) the primary role of the hospice nurse is an educator rather than a wound care provider; (2) hospice providers perceive the barriers and burdens of family caregiver involvement in pressure ulcer care to be bodily location of the pressure ulcer, unpleasant wound characteristics, fear of causing pain, guilt, and having to acknowledge the dying process when a new pressure ulcer develops; and (3) the “team effect” describes the collaboration between family caregivers and the health care providers to establish individualized achievable goals of care ranging from pressure ulcer prevention to acceptance of a pressure ulcer and symptom palliation.

Significance of results: Pressure ulcer care planning is a model of collaborative decision making between family caregivers and hospice providers for a condition that occurs as a secondary condition in hospice. A pressure ulcer places significant burdens on family caregivers distinct from common end-of-life symptoms whose treatment is directed at the patient. Because the goals of pressure ulcer care appear to be individualized for a dying patient and their caregivers, the basis of quality-of-care evaluations should be the process of care rather than the outcome of an incident pressure ulcer.

Objective: The faithful translation of the English version of the Schedule of Attitudes toward Hastened Death (SAHD) into Greek and its validation as an assessment tool in terminally ill cancer patients receiving palliative treatment.

Methods: 120 terminally ill cancer patients attending a Palliative Care Unit, at the University of Athens, Greece, between June 2003 and November 2003 for palliative treatment.

Results: SAHD would be a useful instrument for measuring desire for hastened death with valid psychometric properties in a Greek cancer population. The SAHD demonstrated high reliability. Desire for hastened death was significantly associated with Hospital Anxiety and Depression Scale (HAD) depression (r = 0.607, p < 0.0005) and substantially correlated with HAD anxiety (r = 0.502, p < 0.0005). “Pain intensity” had a moderate correlation with SAHD scores (r = 0.28, p = 0.01) and SAHD scores correlated significantly with “pain interference in mood” (r = 0.38, p = 0.01) and in “enjoyment of life” (r = 0.34, p = 0.03). SAHD correlation with quality of life was statistically significant (r = −0.38, p < 0.01) as was health status (r = −0.36, p < 0.01). Patients with a Poor Performance Status (from Eastern Cooperative Oncology Group scale) correlated significantly with high scores in SAHD (p = 0.038). Factor analysis supported the unidimentionality of the measurement.

Significance of results: SAHD could be a useful and valid instrument for measuring desire for hastened death in Greek terminally ill cancer patients.

Objective: Research indicates that children benefit from supportive interventions to help them cope with the loss of a loved one. The aim of this pilot study was to evaluate children's perceptions of the effectiveness of a grief camp.

Methods: Semistructured interviews were performed with 18 children who attended a weekend-long grief camp. Children also responded to follow-up interviews via telephone. Their parents also completed surveys before camp began and either after camp ended or at a follow-up evaluation. Data were analyzed using descriptive statistics and content coding to uncover key themes in the interviews.

Results: Children reported that art activities helped them to express feelings about their grief and release feelings of sadness and worry related to the death. Parents and children felt that the camp was a positive experience and that the children benefited from being in groups with peers who had also lost family members.

Significance of results: Evaluating the impact of grief camps, using practical methods such as the ones for this study, is important, as these camps are becoming more popular interventions. Children and parents may benefit from contact at specified follow-up periods after camp to determine if they would benefit from further therapy. Results also provide evidence of the success of this program, which supports the need for funding these types of interventions.

Objectives: This article synthesizes the published literature related to the construct of meaning in the adult cancer population.

Methods: The databases CancerLit, CINAHL, Medline, PsychINFO, and the Journal of Psychosocial Oncology and PsychoOncology were searched to identify all studies related to meaning. The methodological aspects of all studies are described and the conceptual aspects are summarized only from those studies that met criteria for methodological rigor and validity of findings. The definitions for global meaning, appraised meaning, search for meaning, and meaning as outcome as proposed by Park and Folkman were used to interpret the findings.

Results: Of 44 studies identified, 26 met the criteria for methodological rigor. There is strong empirical and qualitative evidence of a relationship between meaning as an outcome of and psychosocial adjustment to cancer.

Significance of results: The qualitative findings are considered useful for the development of psychosocial interventions aimed at helping cancer patients cope with and even derive positive benefit from their experience. However, variations in the conceptual and operational definitions, frequent reliance on homogeneous and convenience sampling, and the lack of experimental designs are considered to be methodological limitations that need to be addressed to advance the study of meaning in the context of cancer.

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).

Delirium is a highly prevalent disease in the elderly and postoperative, cancer, and AIDS patients. However it is often misdiagnosed and mistreated. This may be partly due to the inconsistencies of the diagnosis itself. Delirium is best defined currently by an association of cognitive impairment and arousal disturbance. Three subtypes (hyperactive, hypoactive, mixed) receive a definition in the literature, but those definitions may vary from author to author according to the importance they give either to the motoric presentation of the delirium or to the arousal disturbance. Our aim is to point out the inconsistencies we found in the literature, but also to identify different paths that have been explored to solve them, that is, the suggestion to emphasize the arousal disturbances in defining the subtypes instead of the motoric presentations, which seem to be more fluctuating, and because of the fluctuating course of the disease to extend the observation over a period of time, which may improve the accuracy of the diagnosis. This is not without importance from a clinical standpoint. Subtypes of delirium may be explained by different pathophysiologic mechanisms, which remain partly unexplained, and may respond to specific treatments. There is a trend to isolate core symptoms (disorientation, cognitive deficits, sleep–wake cycle disturbance, disorganized thinking, and language abnormalities) so as to distinguish them from secondary symptoms that may be correlated with the different etiologies. Our contribution is also to challenge, with new data, the accepted belief that psychotic features are quite rare in the hypoactive type of delirium. We demonstrate that delusions and perceptual disturbances, although less frequent, are present in more than half of the patients with hypoactive delirium. The psychotic features are clearly correlated with a highly prevalent rate of patients', spouses', and caregivers' distress. The mixed subtype of delirium seems to have the worst prognosis, the hyperactive showing the best prognosis. The treatment of the agitated delirious patient is also more consensual. Haloperidol remains the gold standard in the treatment of delirium regardless of the clinical presentation, but the literature provides several alternatives that may prove more specific and have less adverse effects (atypical antipsychotics, psychostimulants, anesthetics).

Cancer pain generally has a physical cause exacerbated to varying degrees by psychological, social, and spiritual factors. This article describes the case history of a cancer patient with severe pain for which no physical cause could be found, who was subsequently found to have a history of somatization disorder. There follows a review of the literature, with specific reference to the difficulties of managing somatization in the context of cancer.

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.

Indigenous community health outreach workers (CHWs), who serve as a bridge between underserved, difficult-to-reach minority populations and health professionals, can play a critical role in bringing palliative care to patients dying of AIDS and other illnesses in the inner city. Although the contribution of CHWs in the delivery of “curative” and preventive services has been well established, little attention has been given to CHWs in palliative care.

Integrating the medical literature with experiences of a team providing HIV palliative care in the Bronx, a descriptive typology of critical stages and components in the work of CHWs in end-of-life care in the inner city is presented. A longitudinal case narrative, told from the perspective of the CHW, is used to demonstrate the richness and complexity of the CHW's role.

The article concludes with a description of the experience of the CHW, straddling two worlds—the world of the inner city patient and the world of the health care providers—and explores the special characteristics of the individuals who can fill this vital role in palliative care.

Psychotherapy with the terminally ill poses special challenges for clinicians and in return offers unique rewards. As a time limited therapy, acceptance, rather than change is a primary goal; yet, patients can be strongly motivated to change. Patients may need to struggle with how to disengage while also maintaining connection. Unique transference and countertransference issues arise. The psychological tasks of dying include grieving, saying goodbye, constructing a meaningful context to one's life, and letting go. The therapist can serve as a companion and guide to the dying person as she or he negotiates these tasks. Through the use of a case example, these issues are explored from the perspectives of patient and therapist. The therapist must address the following issues: attending to physical suffering, differentiating between grieving and depression, addressing fears, facilitating the life review, and assisting in decision making. A dying patient's need to leave a legacy, complete relationships, grapple with spiritual and religious issues, and attend to his or her family, are often important themes. Therapists must work productively with denial, maintain flexible yet appropriate boundaries, grapple with their own anxiety about death, and grieve the loss of their patients. Psychotherapy with dying patients can help reduce their psychological pain, relieving psychosocial distress and providing opportunities for personal growth in the last stage of life. Such work is often draining yet immensely rewarding for the patient and therapist alike.

Based on a comparison of studies of patient desires regarding end-of-life care and of the actual course of end-of-life care, this article concludes that there is a significant discrepancy in the United States between the kind of care most people want and the kind of care they in fact receive. The article offers a case example to illustrate one type of dilemma commonly encountered in end-of-life care. It then introduces and describes the practice of advance care planning. Use of advance care planning, it is argued, can prevent moral dilemmas and improve end-of-life care.

Objective: Cancer patients often encounter sexual concerns during the diagnosing, treatment, and recovery phase of their illness. However, the sexual concerns of these patients are often overlooked. Brain cancer patients are no exception to this oversight.

Methods: A case report of a 39-year-old patient with a history of high-grade anaplastic astrocytoma presented to the Sexual Health Program at the Memorial Sloan-Kettering Cancer Center complaining of vaginal discharge and several months of amenorrhea. Although the patient was administered extensive aggressive antineoplastic treatments, her disease rapidly progressed.

Results: Despite the patient's terminal illness she continued to have normal sexual thoughts, feelings, and desires; however, she had difficulty discussing these issues with her partner and caregiver, who was her mother. An examination by the sexual medicine gynecologist noted no clinical signs of genital infections; however, there was minimal vaginal atrophy. Her sexual health laboratory evaluation was extensively abnormal. Her treatment consisted of intravaginal non-hormonal moisturizers and vaginal lubricants, counseling, and sexual education. The patient successfully engaged in sexual contact with her partner by the third counseling session.

Significance of Results: Almost all oncology patients have sexual concerns during or following cancer treatment. These patients should be referred to comprehensive sexual health programs for treatment, if available.

Hope is the anticipation of something better to come and an essential component of life. It is a complex notion that is fundamental to the promise of health care. Initially, hope is for cure or restoration of health but in terminal illness, when there is no longer the possibility of cure, hope rests in the knowledge and skill of the medical scientist to alter the course of disease and to prolong life. It is this expectation for renewed physical being that is the focus of every intervention. At the end of life, when science can do no more, hope endures, but the focus of hope changes. It becomes hope to find meaning in life, as it was lived, and in the time that remains. For most, however, the end of life unfolds in the scientific milieu of the hospital where the significance of redefining hope may not be considered, and many die without hope. The purpose of this article is to explore the meaning of hope, to highlight the necessity of redefining hope at the end of life, and to emphasize the importance of sanctuary in engendering hope through relationship. Hospice is proposed as a sanctuary for the final days, where the patient, family, and health professional discover a new meaning of hope through shared human experience.

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.