Terri Schiavo died on March 31, 2005, at the age of 41. Virtually thousands of others died or lay dying on that day throughout the world, yet the death of Terri Schiavo gripped not only the attention of the media throughout the United States and much of the world, but the attention of the U.S. Congress, the U.S. President, the Vatican, and millions in the United States and around the world. Why? Well, in the words of U.S. President George Bush, “The case of Terri Schiavo raises complex issues…. Those who live at the mercy of others deserve our special care and concern. It should be our goal as a nation to build a culture of life, where all Americans are valued, welcomed, and protected—and that culture of life must extend to individuals with disabilities” (The New York Times, March 31, 2005). Terri Schiavo, in her persistent vegetative state of 15 years duration, was being kept alive, in her Florida hospice bed, with the help of a feeding tube that artificially delivered fluids and nutrition. The attempts of her husband over the last 7 years, in opposition to the wishes of his wife's parents, to remove the feeding tube and allow his wife to die have created a firestorm of controversy and debate in judicial, medical, political, ethical, moral, and religious arenas. When Terri Schiavo died, some 13 days after the feeding tube was removed, the noted civil rights activist Reverend Jesse Jackson said, “She was starved and dehydrated to death!” (The New York Times, March 31, 2005). A Vatican spokesman said “Exceptions cannot be allowed to the principle of the sacredness of life from conception to its natural death” (The New York Times, March 31, 2005). Clearly, the death of Terri Schiavo rekindled a variety of debates that were perhaps dormant but unresolved. The political debate in the United States and the appropriateness of steps taken by the U.S. President and Congress will likely continue through the next cycle of elections and the process of selecting and approving judicial nominations. They will also, undoubtedly, influence several aspects of medical research and practice including end-of-life care. The religious and moral debates regarding the sanctity of life will continue and also significantly impact on medical research and medical practice. For those interested in reading more about these particular issues I refer you to two excellent pieces in the April 21, 2005, issue of the New England Journal of Medicine (i.e., Annas, 2005; Quill, 2005). For clinicians and researchers in palliative care, however, the death of Terri Schiavo has raised some rather specific clinical and research issues that must be addressed. These issues pertain primarily to the experience of suffering in the dying process.

At a recent scientific conference in New York City, a student asked one of the scientists participating in a panel discussion on science and religion a provocative question. “Can you be a good scientist and also believe in God?” The scientist, a Nobel laureate, quickly responded: “Belief in the supernatural, especially belief in God, is not only incompatible with good science, this kind of belief is damaging to the well-being of the human race!” But disdain for religion is far from universal among scientists. Francis Collins, who directs the U.S. National Genome Research Institute and was head of the first team to map the entire human genome, is an example of a highly visible and respected scientist who also openly embraces a religious Christian faith. As palliative care clinicians and researchers, we, as well as our patients, are constantly confronted with this very dilemma: the age-old tension between faith and reason, God and science.

With the publication of Volume 3, Number 4 of our journal, Palliative & Supportive Care, we have reached several important milestones that are noteworthy. I am pleased to say that with this issue, we successfully conclude the third year of publication of our new journal, whose acceptance in the scientific and academic community was not a matter of certitude. We had the idealistic mission of providing an intellectual and journalistic home for that small (but growing) band of academicians around the world who were focusing their work in palliative care, with particular emphasis on the psychiatric, existential, and spiritual aspects of care. We have survived! Our survival is due, in no small part, to the contributions of researchers all around the world who have so graciously and generously submitted their work to us for publication. Palliative & Supportive Care is truly an international journal, with authors from more than 15 countries contributing to the journal these past three years. Our thanks also to our wonderful Editorial Board and dedicated reviewers. I know that I speak on behalf of my coeditors, Drs. Chochinov and Wein, when I say that these three years have been extraordinarily challenging, exciting, and extremely rewarding. However, none of it would be possible without the dedication of our Managing Editor, Donna Cassetta, and the wonderful support of the staff at Cambridge University Press, which publishes our journal.

Cancer is frequently compared with war. The daily newspapers report on such-and-such a person's battle against cancer. A patient declares, “I will fight it with everything I've got.” One country has called its peak body “The Association of War against Cancer.” In America the National Cancer Act of 1971 “declared war on cancer” (Levy, 2005). Thus is cancer declared the enemy, which must be conquered.

Objectives: This study sought to identify potential predictive variables of death within 6 months in patients with advanced AIDS.

Methods: Investigators enrolled a consecutive series of patients with advanced AIDS admitted to a skilled nursing facility in New York City over a 1-year period. Demographic, clinical, laboratory, and outcome data were abstracted from medical records using a standardized data collection instrument.

Results: Of the 152 patients enrolled during the study period, 61 patients (40%) died within 6 months from date of admission. Serum albumin, percent deviation from ideal body weight, and number of comorbidities at the time of admission proved to be the best combination of predictors of death within 6 months.

Significance of results: The decrease in AIDS mortality over the past decade, along with an increase in prevalence due to longer survival, has been attributed primarily to the successful use of highly active antiretroviral therapy (HAART). HAART regimens, however, can also produce both short-term adverse effects and long-term complications. The prognostic model developed by this study may be useful in guiding treatment decisions in patients with advanced AIDS for whom a more palliative care plan may be sought.

Objective: It is known that families of terminally-ill cancer patients show levels of emotional and functional disruption and are called “second order patients,” however, little is actually known about the health problems of family members, especially in terms of cancer.

Methods: This study reviewed the family histories of terminally-ill cancer patients in a palliative care unit and investigated cancer related health problems of the spouses of terminally-ill cancer patients.

Results: We investigated the past medical history of 125 spouses of terminally-ill cancer patients and found that five spouses had a past medical history of cancer. In these five spouses, the duration of illness, present status of treatment and physical condition were reviewed from the database. Of these five spouses, three patients continued to attend an outpatient clinic regularly for checkup and one patient was hospitalized for nephrectomy. Two spouses did not have physical symptoms that made them unable to provide direct care for the terminally-ill spouses, while three could not provide care because of their own physical symptoms derived from cancer.

Significance of results: Our findings indicated that some of the spouses of terminally-ill cancer patients are not only “second order patients” but also “cancer patients.” Our findings also suggest that some spouses of terminally-ill cancer patients might experience distress both as a cancer patient and as a spouse and may need care both as a cancer patient and as a spouse.

Perhaps I best not mention his name; his lawyers, after all, are much more familiar with The Color of Money than mine will ever be. Nevertheless, these outrageous rantings by one of Hollywood's alleged Top Guns—denouncing psychiatry and challenging the legitimacy of psychiatric illness—has got to stop.

Objective: To identify criteria for measuring the eligibility of patients with end-stage noncancer diseases for palliative care services in Australian residential aged care facilities.

Methods: No validated set if guidelines were available so five instruments were used: an adaptation of the American National Hospice Association Guidelines; a recent adaptation of the Karnofsky Performance Scale; the Modified Barthel Index; the Abbey Pain Score for assessment of people who are nonverbal and a Verbal Descriptor Scale, also for pain measurement. In addition, nutritional status and the presence of other problematic symptoms and their severity were also sought.

Results: The adapted American National Hospice Association Guidelines provided an initial indicative framework and the other instruments were useful in providing confirmatory data for service eligibility and delivery.

Objective: In this pilot project we examined the quality of life of spouses of cancer patients who had significant fatigue.

Methods: We assessed both the spouses of cancer patients and the patients who presented with chemotherapy-induced fatigue and anemia. Study endpoints included the impact that cancer patients' fatigue had on their spouses' quality of life, including their own levels of fatigue, depressive symptoms, activity levels, work absenteeism, and marital adjustment. We examined the extent to which changes in patients' fatigue from baseline to one month follow-up were associated with changes in spouses' quality of life indices.

Results: 25 couples completed the study. Seven (28%) spousal caregivers reported handling fewer responsibilities at work, 8 (32%) had reduced their work hours, and 8 (32%) felt that they were less effective overall at work. Spousal caregivers also missed a significant amount of time at work during the month long study, missing an average of 2.7 (SD = 2.95) days, with an additional 1.29 (SD = 2.97) sick days and 1.76 (SD = 2.63) vacation days during that time. Spouses reporting greater levels of caregiver strain were more likely to have increased fatigue at baseline (F1,23 = 8.11, p < .01), and worse dyadic adjustment at both time points (baseline: F1,23 = 7.80, p < .01; follow-up: F1,21 = 9.24, p < .01). Also, those with more caregiver strain were less likely to engage in social activity at baseline (F1,23 = 6.11, p < .05) and more likely to engage in less work by the one month follow-up (F1,20 = 8.36, p < .01).

Significance of results: Spouses who were identified as having elevated burden experienced more personal fatigue, had worse dyadic adjustment, reported poor energy levels, and tended to engage in fewer work and social activities; the impact of patient's fatigue level on these parameters was highly variable in this small pilot study.

Objective: To identify the factors associated with difficulties encountered by nurses working in general wards in hospitals in Japan.

Methods: Questionnaires including items regarding difficulties in providing care to terminally ill cancer patients, the existence of a mentor regarding end-of-life issues, awareness of end-of-life issues, and demographic factors were administered to 375 staff nurses working in general in-patient wards. Multivariate regression analyses were employed to investigate correlations between factors.

Results: Multivariate regression analysis revealed that the existence of a mentor for end-of-life issues was associated with fewer difficulties in all areas other than “Knowledge and skill of nurses.” Clinical experience was inversely related to difficulties in “Communication with patients and families” and “Personal issues.” Greater awareness of end-of-life issues was related to higher difficulties in most areas.

Significance of results: The existence of a mentor was correlated with fewer difficulties in most areas. Support by a palliative care team might be effective in reducing difficulties experienced by nurses and in improving care for terminally ill cancer patients. Basic communication training undertaken sooner after registration might be also useful.

Objective: For patients who are terminally ill, the efficiency of symptom management is dependent, among other factors, on an accurate assessment by proxy raters. The aim of this prospective study is to describe differences in symptom severity ratings between patients and their nurses, physicians, and family members during their stay in different departments with acute care, and to identify variables associated with the accuracy of the ratings by others.

Methods: Physical, psychological, social, and functional disorders were assessed for 41 in-patients with a standardized 13-item Symptom List for Quality Assurance in Palliative Care drafted by the Working Group on the Core Documentation for Palliative Care Units in Germany. Symptom assessment was completed by different raters (patient, nurse, physician, family member) within the first four days after admission. Socio-demographic, disease-related, and hospitalization data were taken from patient charts.

Results: Reliability of the symptom list was computed with Cronbach's alpha measures for the present sample. Between-group-comparisons on the individual items and on the sum-score level were analyzed separately for the different rater-pairs: patients-nurses (n = 41), patients-physicians (n = 39), patients-family members (n = 12). Multiple regression analyses calculated predictive variables of the staff's deviation scores.

Significance of results: Significant differences for nurses and physicians were found on the sum-score level for psychological and social symptoms, but not for physical and functional symptoms. Family members rated the intensities of the symptoms generally higher than the patients. Suggestions for further analyses are presented and discussed.

Objective: Individuals in the helping professions are subject to unique stressors that may lead to burnout, and research has shown that those who work with dying or bereaved individuals might be particularly at-risk. This study explores how factors such as spirituality and level of training might buffer the stress of working with terminally ill clients and their families.

Method: A total of 80 medical and mental health practitioners attending palliative care seminars were surveyed, with each completing validated measures of daily spiritual experiences and caregiver burnout, as well as assessments of demographic factors, their general education and training experiences specific to working in end-of-life care and bereavement settings.

Results: Findings indicate that daily spiritual experiences might mitigate physical, cognitive, and emotional forms of burnout in the workplace. In addition, a negative correlation was found between the amount of end-of-life training received and burnout in the physical and cognitive domains. However, training was not related to professionals' level of emotional exhaustion.

Significance of the research: Results reinforce a growing literature on the salutary effects of spirituality, and underscore its relevance as one possible form of constructive coping for professionals attending to the needs of the dying and bereaved. The study carries further implications for how the stresses of such work might be ameliorated by enhanced training efforts, as well as creative facilitation of diverse spiritual expressions (e.g., inclusive forms of ritual recognition of loss) in the workplace.

Objective: In this study, we examined the prevalence of depression, its recognition, and its treatment in continuing care patients with advanced illness (AI).

Methods: All data were obtained from the Ontario (Canada) provincially-mandated MDS 2.0 form for chronic care. Of 3,801 patients, 524 met our empiric definition of AI, which was predicated on a previously validated algorithm. The MDS-embedded Depression Rating Scale (DRS) was used to measure psychological well-being and a score of 3 or greater indicated potential depression.

Results: Twenty-nine percent of patients with AI scored greater than 3, making them nearly twice as likely to be potentially depressed as other patients (OR 1.8, 95% CI 1.5–2.2). Despite this patients with AI were less likely to have received antidepressants (28.9% vs. 38.2%), even among those with a diagnosis (45.3% vs. 58.4%). Using logistic regression, correlates of potential depression were identified and surprisingly patients with cancer were substantially less likely to be depressed (AOR 0.37, 95% CI 0.2–0.6). Further investigation revealed that cancer patients were more likely to be treated for depression and to be recognized as being within the terminal phase of illness.

Significance of results: These findings suggest that a high proportion of terminally ill patients had unmet needs for psychological support. As well, they suggest that cancer patients received better targeted end-of-life care, which resulted in an overall decrease in psychological distress when compared to other patients with similarly advanced illness.

Objective: The nature of sleep disturbances in palliative cancer patients has not been delineated clearly or fully understood due to limited clinical information. The purpose of this study was to describe sleep disturbance patterns, treatments, and communication in an advanced cancer outpatient population attending a pain and symptom control clinic.

Method: One hundred oncology outpatients who came for consultation at a multidisciplinary pain and symptom control clinic were asked and agreed to complete a self-report questionnaire that elicited information about their sleeping habits, sleep concerns, sleep enhancement strategies, and related communication with health care providers.

Results: The majority of participants (72%) reported a wide variety of sleep disturbances, after cancer diagnosis, with the three most frequent elevated symptoms (≥5) being not feeling rested in the morning (72%), difficulty staying asleep (63%), and difficulty falling asleep (40%). Approximately one-fifth of participants (19%) reported having insomnia problems prior to their cancer diagnosis. In a correlational comparison with four other symptoms (i.e., fatigue, pain, anxiety, depression), the three highest correlations were between difficulty falling asleep and fatigue (r = 0.612), early awakening and fatigue (r = 0.596), and difficulty falling asleep and anxiety (r = 0.572). Fifty-three percent of participants reported using a variety of interventions for their sleep problems, the most frequent being sleep medication (37%). Of the 52 participants who reported an elevated level of concern about their sleeping difficulties (≥5), 48 (92%) discussed their concerns with a health care provider. However, of the 20 participants with elevated symptoms (≥5) and low levels of concern (<5), only 7 (35%) communicated their concerns to a health care provider.

Significance of results: The results of this study underline the importance of routine clinical assessments to detect sleep problems and interventions designed specifically to improve the overall sleep quality of cancer patients.

Background: Sociologists, anthropologists, and psychologists agree that grief is a universal phenomenon. Reactions to it are, however, socially constructed and patterned.

Objective: To compare the outcomes of bereavement among family or close friends of deceased first-generation black Caribbean and white native-born patients living in the United Kingdom.

Design: Comparative cross-sectional questionnaire survey in three inner London health authorities administered 10 months after the patient's death.

Participants: Family and close friends of 50 deceased first-generation black Caribbean and 50 native-born white patients with advanced disease.

Main outcome measures: 28-item General Health Questionnaire (GHQ-28), Core Bereavement Items scale, a 17-item measure of grief.

Results: The intensity of grief, measured using the Core Bereavement Items was similar between the two groups. Seventy-two respondents had visited their family doctor subsequent to bereavement, and of these, black Caribbean respondents reported more psychological problems. Depression and anxiety measured by the GHQ-28 were significantly higher among black Caribbean respondents (28.00 vs. 21.2) (t-test = −2.28, p = 0.025). Multiple regression analysis revealed this difference was best accounted for by bereavement concerns such as legal and housing problems.

Conclusions: This study has observed higher psychological morbidity among the bereaved Caribbean individuals. Family doctors are a source of support for three-quarters of respondents, and they may need to focus on the needs of black and minority ethnic minorities.

Objective: The primary aim of the present article was to identify palliative care patient populations who are willing to participate in and able to complete a group exercise/physical training program designed specifically for the individual patient.

Method: We conducted a prospective phase II intervention study examining the willingness and ability of palliative care cancer patients to participate in a group exercise physical training program. Patients who were diagnosed with incurable cancer and had a life expectancy of less than 1 year at two outpatient clinics were invited to participate in an exercise program in the hospitals. The groups met twice a week over a 6-week period.

Results: One hundred one consecutive patients were asked for inclusion. Sixty-three patients agreed to participate. Sixteen (25%) of the 63 patients dropped out after consent was given, but before the program started due to medical problems, social reasons, or death. Thus, 47 patients started the exercise program. Thirteen patients withdrew during the program due to sudden death, medical problems, or social reasons. The most frequent reasons for withdrawal were increased pain or other symptoms. Thirty-four patients completed the exercise program.

Significance of results: A high proportion of incurable cancer patients were willing to participate (63%) in a structured exercise program. The attrition rate was high, but despite being severely ill, 54% of the patients completed the exercise period. This shows that a physical exercise program tailored to the individual patient is feasible in this population.

Objective: To identify factors associated with internal medicine interns' self-assessed competency in death pronouncement and to evaluate the effectiveness of a 10-minute death pronouncement module and pocket card guidelines.

Methods: In June 2003 at the Birmingham VAMC, Alabama, 48 internal medicine interns completed a survey of medical school education, training, and experience in death pronouncement and a self-assessment of death pronouncement competency. In September 2003, 33 of the 48 interns completed a follow-up training/education survey and rated their post-intervention competency. Using chi-square and paired t-tests, we identified factors associated with variations among baseline and post-intervention variables and examined pre-post changes in self-assessed competency levels.

Results: At baseline, less than 30% of the interns had medical school instruction in the process of death pronouncement. More than 70% reported needing basic instruction/close supervision. Post-intervention, close to 90% interns needed minimal or no assistance. Over 50% reported using pocket card guidelines. We found significant pre-post increases in mean rankings in each of the 5 self-assessed competencies (p < .001). Factors associated with differences in baseline and post-intervention assessments included medical school training/experience and use of the pocket card guidelines.

Significance of results: When interns began training, most had no instruction in death pronouncement and felt unprepared for this task. With brief instruction, pocket card guidelines, and 3-months experience, the majority of interns reported needing minimal/no assistance in pronouncing death. A larger sample from multiple sites is needed to confirm these findings.

Objective: To investigate social aspects of caregiving for people living with motor neurone disease (MND) and examine their relationships to carers' well-being.

Methods: A questionnaire was developed to assess carers' perceptions of their social support network (the Caregiver Network Scale, CNS), including measures of sociodemographic status and general well-being (GHQ-12), and mailed to carers of people living with MND.

Results: Seventy-five surveys were returned (response rate: 33%). In univariate analyses, relationships between well-being and carer age, time as caregiver, and four subscales of the CNS were found to be significant. However, multivariate analyses combining their effects revealed that stress on carer social networks was the best single contributor to predictions of carer well-being.

Significance of results: Results indicate that prolonged caring for others living with MND has substantial costs for the carer in terms of loss of social support, which affects carer well-being and impacts ultimately on those living with MND. The CNS offers promise as a measure for screening at-risk carers; those who are distressed become candidates for professional intervention to help them cope better. Further research, providing validation of the scale for this task, is recommended.

Objectives: To investigate health-related quality of life (HRQOL) in children eligible for Phase 1 trials and the reasons why families consider participating in these trials.

Methods: Individual, semistructured interviews were conducted with parents (seven mothers, two fathers) and three children, after a child was invited to participate in a clinical trial. Information regarding disease and treatment progression, daily life, and decision making about experimental treatments was elicited. Interviews were recorded, transcribed, and coded for themes.

Results: HRQOL themes were grouped into four main domains: physical, psychological, social, and spiritual. Minimal physical restrictions, maintaining normalcy and control, information sharing, and having hope for life seemed to be critical HRQOL components. Hope for a cure and prolonging the child's life were the main reasons for enrolling in Phase 1 trials.

Conclusions: Normalcy and control are key end-of-life HRQOL components, and hope for life is a main reason for participating in Phase 1 trials.

Objective: Patient-centered care is better achieved through a comprehensive understanding of patients' preferences for how they want to live their life and how they want to influence their own death. Though much has been written on identifying goals of care, it is often difficult for clinicians to articulate patient goals to guide care planning. We explored the literature on patient's preferences for their care in chronic or life-limiting illness to develop a model for assessment of patient perspectives. We then illustrated our model with composite patients from our clinics and we provide questions to guide patient discussion.

Methods: We searched MEDLINE from 1986 to 2004 for primary research articles that relate primarily to a patient's preferences for his or her care. We reviewed over 3500 titles, abstracts, and research papers. Hundreds of articles described patients' quality of life, health status, or satisfaction. We excluded consensus guidelines, non-English papers, reviews, and articles focused on medical professional perspectives. Forty-eight studies focused primarily on patient preferences. Using an iterative process, we identified unique issues and broader themes in patients' desires for their care.

Results: Studies focused on patients with cancer, those in hospice or those with terminal disease. Three domains emerged: patient feelings about disease, feelings about suffering, and feelings about the circumstances of death. Attention was given to the differences between patients in terms of the strength and persistence of feelings in each domain.

Significance of results: Based on existing data, there are three fundamental domains of patient perspective that influence preferences for care. These domains can be assessed by the care team to guide the development of a plan of care and to identify areas of conflict. Our review identifies gaps in the end-of-life literature and areas for future work in patient preferences.