Objective: The aim of this study was to investigate whether there were any differences between patients who died at home and patients who died at a hospice, that is, sociodemographic variables, the family caregivers' experiences of burden, and their opinion of reasons for hospice care.

Methods: The study comprises a consecutive sample of family caregivers to adult patients: (I) who were cared for by the advanced palliative home care team (APHCT) and died at home, (II) who were cared for by the APHCT and died at the Hospice, (III) who were cared for and died at the Hospice in Uppsala during a period of one year. A questionnaire was mailed to caregivers and the medical records of all the patients were analyzed.

Results: The place of death differed significantly and varied according to gender and cohabitation status. Men died to a greater degree at home compared with women. The family caregivers' experiences of burden were moderate. Caregivers of patients who died at home thought that this care form has a more positive influence on the patients' quality of life than was the case in the other groups. They were also more satisfied with their own achievement. The caregivers' opinion of why patients needed hospice care was nearly the same in groups II + III, acutely developing symptoms being the most common reason.

Significance of results: This study showed that women died to a lesser degree at home than men. The explanation for this is unknown and requires further investigation. It is important to establish whether female patients or male caregivers need another type of support than male patients or female caregivers, since the aim of palliative care is that every patient who wishes to die at home should have this wish fulfilled.

Objective: The aim of this paper is to delineate the particular nature of the end-of-life care experience from the perspective of family members and friends. Ideas drawn from feminist analyses of caring and the sociology of death and dying are used to illuminate study respondents' accounts.

Methods: Qualitative study with people who cared for a family member or friend who died of breast cancer. Two interviews were conducted with each of 12 study participants, and one carer responded by letter to a series of questions drawn from the interview guide. Accounts were analyzed with reference to grounded theory methods.

Results: The analysis presented here suggests that anticipating the death of an ill relative or friend generates imperatives to care, imperatives that are both “felt” and linked to wider social structures and processes. The value assigned to closeness with the ill person can be seen to reflect cultural injunctions toward a “good death,” and to shape informal carers' perceptions of their labor. Also discussed in this paper are the complex negotiations undertaken by relatives and friends, for the life and death of someone with advanced cancer.

Significance of results: This paper offers insight into the social processes of caregiving, revealing how care may be shaped in particular ways by an awareness of approaching death.

Objective: This study aimed to examine factors associated with the prescription of opioid analgesics to terminal cancer patients, including physicians' general attitudes toward morphine and contextual factors.

Methods: A survey was conducted among a sample of French general practitioners (GPs) and oncologists. Respondents were asked to describe the last three terminally ill patients they had followed up to death.

Results: Overall, 526 GPs and oncologists (global response rate: 57%) described 1,082 cancer patients, among whom 85.4% received opioid analgesics. Among other significant predictors (patient age, cancer type, family assistance), this prescription was less frequent for female patients followed by male physicians (OR = 0.53), and more frequent for patients followed by physicians trained in palliative care (OR = 2.70). On the other hand, physicians' attitudes toward morphine were not associated with prescription of morphine and other opioid analgesics.

Significance of results: Although nonprescription of opioid analgesics is only a crude proxy measure for undertreatment of cancer pain, our findings suggest the need to develop training in palliative care in order to standardize practices among GPs and specialists. Our results also highlight the necessity to study pain assessment as an interaction between the physician and the patient, and to consider patients' and physicians' respective genders as a key variable within this interaction.

Objective: A key aspect of the role of clinicians caring for patients in the setting of advanced illness focuses on attending to the needs of informal caregivers during the end-of-life period. The purpose of this study was twofold: (1) to complement and enrich existing quantitative findings regarding caregiver burden near the end of life, and (2) to identify potential solutions to caregivers' unmet needs in an effort to assist clinicians in the development of clinical interventions.

Methods: This qualitative study, using focus groups and content analysis of transcripts, was conducted in a comprehensive cancer center in Washington, DC. Seven focus groups were held: three with recently bereaved caregivers and four with active caregivers of patients with metastatic cancer and an expected survival of 6 to 12 months.

Results: Data were stratified into two broad categories: (1) general problems and (2) behaviors/activities that were helpful/would have been helpful in alleviating these problems. Within each of these two categories, five subcategories emerged: medical care (including provision of information, coordination of care, bedside manner, satisfaction with care), quality of life (including well-being, role adjustments), help from others (including practical assistance, social support), positives of caregiving, and unsolicited themes (including job flexibility, impact of the disease on the family, informational needs, relationship with patient).

Significance of results: Results suggest caregivers may benefit from more information about patient prognosis and hospice, attention to quality-of-life issues, and enhanced, direct communication with clinicians. Although information of this nature is likely to be known to palliative care clinicians, the specific details and verbal insights provided by caregivers give an important voice to existing quantitative data and may provide more detailed information to assist palliative care clinicians seeking to develop interventions to meet caregiver needs during the period near the end of life.

Objective: To investigate differences between African American and White family caregivers in self-reported health, use of social support and external resources, and emotional and financial strain in the context of their care of a family member with advanced cancer.

Methods: Sixty-nine patient-designated family caregivers of patients with advanced lung or colon cancer interviewed between December 1999 and July 2001.

Results: Most African American and White family caregivers were able to identify someone else who was helping them in the care of their family member. Few caregivers used outside resources (e.g., home-based medical care, meal delivery, pastoral care, outside social support visitor) to assist in the support and care of the patient. At baseline, White caregivers were more likely to agree that caregiving caused work adjustments (ρ = .28, p = .02) and emotional difficulties (ρ = .32, p = .008) and that caregiving had been completely overwhelming (ρ = .19, p = .12) than were African American caregivers. At follow-up, among family caregivers of patients who had died, 44% reported having to quit work to provide personal care for the patient. Twenty-five percent of family caregivers reported using most or all of the family's saving in caring for the patient.

Significance of results: Caregivers of patients at end of life experience substantial emotional and financial difficulties related to caregiving. Family caregiving is a private undertaking with little use of outside resources to mitigate the burden.

Objective: Palliative care is a philosophy of care for individuals experiencing progressive, incurable disease. It encompasses two dynamics, science-based practice and relationship between patient, family, and health professional. Each dynamic is essential for quality palliative care, yet the requisites for each are different.

Methods: The scientific process of observation and measurement requires differentiation, distance, and detachment to fulfill its demands for objectivity, whereas relationship, unobservable and immeasurable, requires sameness, closeness, and connection of a shared humanity. It is science, however, the prevailing world-view, that shapes our thinking and consequently, influences the education and practice of health professionals.

Results: We explore the dynamics of science and relationship and the incongruities between them. We examine the prominence of science in palliative care and its impact on relationship.

Significance of results: We contend that questioning the current emphasis of science in palliative care and discovering the joy and rewards of shared human experience will enrich the quality of life for patients, families, and health professionals.

According to the World Health Organization, the patient and family should be viewed as the “unit of care” when palliative care is required. Therefore family caregivers should receive optimal supportive care from health professionals. However, the impact of supporting a dying relative is frequently described as having negative physical and psychosocial sequalae. Furthermore, family caregivers consistently report unmet needs and there has been a dearth of rigorous supportive interventions published. In addition, comprehensive conceptual frameworks to navigate the family caregiver experience and guide intervention development are lacking. This article draws on Lazarus and Folkman's seminal work on the transactional stress and coping framework to present a conceptual model specific to family caregivers of patients receiving palliative care. A comprehensive account of key variables to aid understanding of the family caregiver experience and intervention design is provided.

Objective: The problem of boredom in people with cancer has received little research attention, and yet clinical experience suggests that it has the potential to profoundly affect quality of life in those patients. We were interested in developing a Purposelessness, Understimulation, and Boredom (PUB) Scale to identify this problem and to begin to differentiate it from depression.

Methods: Cancer patients and professionals were interviewed using a semi-structured format to elicit their perceptions of the incidence, causes, scope, and consequences of boredom. From their responses, 45 questions were developed, edited for clarity, and piloted. A total of 100 cancer patients were recruited to participate in the study. Preliminary validation of the PUB using a cross-sectional survey of the measure was conducted. Other instruments used for purposes of convergent and divergent validity included the Functional Assessment of Cancer Therapy Scale–Anemia, Zung Self-Rating Depression Scale, Boredom Proneness Scale, Leisure Boredom Scale, Cancer Behavior Inventory, Systems of Belief Inventory, and the Eastern Cooperative Oncology Group Performance Status Scale.

Results: The average age of the sample was 62.37 years (SD = 13.43) and was comprised of 60 women (60.00%) and 40 men (40.00%). The results of a factor analysis on the 45 initial items (selected on the basis of professional and patient interviews) created a two-factor scale. The eight items from the strongest factor (items 1, 2, 3, 4, 5, 6, 9, 10) seemed to best tap the construct that could be deemed as overt boredom whereas the six items of the second factor (items 36, 38, 39, 42, 44, 45) seemed to tap the construct of boredom related to meaning and spirituality. Total scale internal consistency, when all 14 items were included in the analysis, yielded a coefficient alpha of 0.84 and good test–retest reliability at 2 weeks (r = .80, p < .001). The novel 14-item PUB Scale was significantly correlated to other measures of boredom; the Boredom Proneness Scale (r = −.588, p < .001) and the Leisure Boredom Scale (r = .576, p < .001).

Significance of results: The PUB Scale was found to be a statistically viable tool with the ability to detect boredom and differentiate it from depression. In many respects this work is in concert with much of the current research and clinical effort going on in psycho-oncology that defines components of distress that in sum, redefines depression in advanced cancer.

Objective: This study evaluated the comparability of two 5-point symptom self-report rating scales: Intensity (from “not at all” to “very much”) and Frequency (from “none of the time” to “all of the time”). Questions from the Functional Assessment of Chronic Illness Therapy (FACIT)-Fatigue 13-item scale was examined.

Methods: Data from 161 patients (60 cancer, 51 stroke, 50 HIV) were calibrated separately to fit an item response theory-based rating scale model (RSM). The RSM specifies intersection parameters (step thresholds) between two adjacent response categories and the item location parameter that reflects the probability that a problem will be endorsed. Along with patient fatigue scores (“measures”), the spread of the step thresholds and between-threshold ranges were examined. The item locations were also examined for differential item functioning.

Results: There was no mean raw score difference between intensity and frequency rating scales (37.2 vs. 36.4, p = n.s.). The high correlation (r = .86, p < .001) between the intensity versus frequency scores indicated their essential equivalence. However, frequency step thresholds covered more of the fatigue measurement continuum and were more equidistant, and therefore reduced floor and ceiling effects.

Significance of results: These two scaling methods produce essentially equivalent fatigue estimates; it is difficult to justify assessing both. The frequency response scaling may be preferable in that it provides fuller coverage of the fatigue continuum, including slightly better differentiation of people with relatively little fatigue, and a small group of the most fatigued patients. Intensity response scaling offers slightly more precision among the patients with significant fatigue.

Objective: An increasing number of patients are cared for at home and the presence of next of kin is often a prerequisite for successful home care. The aim of this study was to describe and interpret the construct of meaningfulness in next of kin of cancer patients who are in advanced palliative home care.

Methods: The perspective of Antonovsky's salutogenic framework of sense of coherence was applied in the analysis. Using a hermeneutic approach, 19 next of kin were interviewed (n = 30 interviews) during ongoing palliative home care.

Results: Elements that facilitated meaningfulness included comfort, retaining everyday life, action, commitment, and hope, which were of great importance for creating a perception of self-transcendence and that the best possible was done.

Significance of results: The findings are discussed in relation to the concepts of meaning-based coping, tragic optimism, and existentialism. Clinical implications are suggested.

Ethical dilemmas in end-of-life care, such as the request for assisted suicide, must be understood in the context of the relationship that exists between patients and the clinicians treating them. This context includes the way health professionals respond to the tasks in caring for a dying patient. This article reviews the literature exploring the factors the influence clinical decision making at the end of life. The interplay of ethics, countertransference and transference are explained in detail.

Objective: Complementary and Alternative Medicine (CAM) is becoming increasingly popular among cancer patients, in particular those with breast cancer. It represents one of the fastest growing treatment modalities in the United States. Therefore, knowledge of CAM therapies is becoming necessary for physicians and other health care providers. CAM encompasses a wide range of modalities including special diet and nutrition, mind–body approaches, and traditional Chinese medicine.

Methods: We reviewed the biomedical literature on CAM use in breast cancer patients, using Medline search from 1975 until 2002. In addition, consensus reports and books on CAM and breast cancer were included in the review. We evaluated the prevalence of CAM use in breast cancer patients, the reasons cited for its use, the different available modalities, and the reported outcomes.

Results: Use of CAM in breast cancer patients ranges between 48% and 70% in the United States. The most commonly used CAM modalities include dietary supplements, mind–body approaches, and acupuncture. The reasons cited for using CAM were to boost the immune system, improve the quality of life, prevent recurrence of cancer, provide control over life, and treat breast cancer and the side effects of treatment. Several studies reported favorable results including improved survival, better pain control, reduced anxiety, improvement in coping strategies and significant efficacy in treating nausea and vomiting. Other less well-organized trials have reported either no benefit or negative effect of CAM and potential toxicity of some commercial products.

Significance of results: CAM is a growing field in health care and particularly among breast cancer patients. Knowledge of CAM by physicians, especially oncologists, is necessary. Oncologists should be willing to discuss the role of CAM with their patients and encourage patients to participate in well-organized research about CAM.

Objective: Although surgery for early-stage non-small cell lung cancer (NSCLC) is generally considered curative, the outcome is still unsatisfactory, leaving patients faced with uncertainty and fear of recurrence for a long time after surgery. The purpose of this study was to clarify the course of patients' mental adjustment after surgery for NSCLC and to identify predictors of long-term outcome.

Methods: A total of 205 patients completed a baseline interview for patient characteristics at 1 month after curative resection of NSCLC and for social support at 3 months, and the Mental Adjustment to Cancer scale at 3 and 12 months. Univariate and multivariate analyses were used to identify predictors of their psychological outcome.

Results: The helplessness/hopelessness subscale score improved slightly after curative resection (p < .001), but the score on the fighting spirit subscale score was unchanged (p = .659). Significant predictors of helplessness/hopelessness at 12 months included helplessness/hopelessness at 3 months and advanced disease stage, and satisfaction with confidants. Significant predictors of fighting spirit at 12 months included fighting spirit at 3 months existence of confidants.

Significance of results: The results suggested that mental adjustment improved slightly after curative resection for NSCLC. They also suggested the need to maintain continuity of psychosocial care that provides social support, and that an approach that includes careful attention to patients with advanced stage disease may be a strategy for improving mental adjustment after surgery for NSCLC.

Objective: To report on the case of a terminally ill patient who expresses suicidal ideation.

Methods: As this case demonstrates, suicidality at end-of-life poses numerous challenges for the palliative care team. In this case, a 49-year-old man with locally extensive head and neck cancer refused all life-prolonging treatment and expressed a desire to hasten his own death. Other issues, such as chemical dependency and lack of social supports, complicated his care.

Results: Suicidality lessened as continuity of care, with ongoing assessments and interventions, addressed sources of suffering and built relationships with health care professionals.

Significance of results: This case highlights the observation that desire for hastened death fluctuates for patients at end-of-life and may be influenced by factors under the control of the palliative care team.

Articles from the last decade that have propelled the field of palliative care are reviewed. The areas of depression, anxiety, substance abuse, delirium, and grief are represented by seminal articles that define, explore, or thoroughly review these topics.

On one level it was a perfectly ordinary wedding—elaborate floral bouquets adorned the room, the family's favorite lemon cake was covered in sugar-frosted curlicues and topped with traditional tiny statuettes of a happy couple, the bride's gown was splendid, and the wedding feast was complete with shrimp cocktail, filet mignon, and champagne. On another level, as the bride's mother, 58-year-old Amy Plasse slowly walked down the aisle, everyone in the hospital chapel knew that they were participating in an extraordinary event. This was the culmination of Amy's life; she had achieved her final goal—to witness the wedding of her only daughter. The way was prepared to stop the life-support treatment of dialysis and to end the prolongation of her suffering.

Each year, hundreds of thousands of Americans die following withholding or withdrawal of life-support treatments. This dramatic change in the practice of medicine has quietly taken place and been accompanied by minimal publicity or discussion.

Objective: Significant levels of depressive symptoms are an impediment to adjustment and affect greater than one-third of people with cancer. The clinical diagnosis of major depression is estimated to occur in 25%. Depression is dramatically underrecognized by oncologists and oncology nurses, and as a result, often undertreated. Clinical experience suggests that antidepressants of virtually all types are well tolerated and potentially efficacious. There is, however, a lack of an evidence base for the use of antidepressants in cancer patients.

Methods: We undertook an open-label pilot study using citalopram in 30 cancer patients who reported a high level of depressive symptoms on the Zung Self-Rating Depression Scale (ZSDS). In addition to the ZSDS, eligible patients completed a series of visual analog scales for pain, depression, and sleep disturbance; the Functional Assessment of Cancer Therapy-General Module; and the Purposelessness, Understimulation, and Boredom Scale developed by the research team. Patients began a 2-month course of therapy with citalopram 20 mg, increasing to 40 mg at the end of the fourth week if the patient was in the same range of depressive symptoms as measured by the ZSDS.

Results: Twenty-one of 30 patients completed the protocol. The average age of the sample was 57.32 years (SD = 12.6) and was comprised of 11 women (52.4%) and 10 men (47.6%). Depressive symptoms decreased and quality of life improved during the 8-week treatment period. Of special interest was the rate of improvement in boredom, and using the total boredom score of the PUB, significant improvement compared to baseline was seen in weeks 6 (F = 5.266, p < .05) and 8 (F = 9.248, p < .01).

Significance of results: Overall, the positive findings suggest the need for a randomized, double-blind, placebo-controlled trial of citalopram in cancer patients. Regarding the interplay of boredom and depression, the relationship between improvements in depressive symptoms and boredom is complex. This is illustrated by the way in which the different elements respond to antidepressant treatment. Depression began to improve almost immediately upon initiation of treatment whereas improvement in boredom does not become evident until week 6.

His death had been expected for weeks. Just out of his teens he never complained, the girls reminisced later. The leukemic weeds in his blood starved his body of fight and life. His parents stood by his bed as he lay dying. His breathing quickened over a quarter of an hour, then slowed, became irregular and ceased. He died. Death to those inexperienced can be a little surprising in its understatement. Nothing much happens. These parents showed little shock. No hysterics. Numbed, exhausted. In the end all deaths are alike, but no stories the same.

Growing up on New York City's Lower East Side of the 1950s there were no other Breitbarts to be found, so it was not surprising that I would be drawn to the heroic legend of my famous ancestor and namesake, Siegmund (Zishe) Breitbart. My parents were survivors of the Holocaust, born in Turka, a small shtetl in Galicia, Poland, not far from the Lodz birthplace of the “greatest Jewish strongman—the modern Samson.” Being related to the famous Jewish “Iron King” was, for me, a proud link to a legacy of strength, courage, and defiance in an environment scarred by the profound losses and overwhelming grief of my generation of “children of survivors.” In 1994, I attended the International AIDS Congress in Berlin, and was the first Breitbart, to my knowledge, to visit Zishe's grave site in a small Jewish cemetery in the former East Berlin. Zishe Breitbart was a looming figure of strength in my subconscious.