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.

Palliative and Supportive Care is an international journal that was begun specifically with the intent of promoting the development and integration of psychiatric, psychosocial, and existential aspects of clinical care into the modern practice of palliative medicine. We hoped to achieve this goal by providing a resource to clinicians and an outlet for clinical researchers interested in the unique interface of palliative care and psychosocial/existential issues in those with life-threatening medical conditions. It is therefore very encouraging to see a growing interest in this particular interface of palliative medicine and psychosocial/existential care. I reported to our readers, in the last issue of Palliative and Supportive Care (PS&C), of the great interest in psychosocial and existential issues in the palliative care community as represented by the June 2004 Research Congress of the European Palliative Care Association held in Stresa, Italy. I have just returned from the 7th World Congress of Psycho-Oncology, sponsored by the International Psycho-Oncology Society (IPOS), held on August 24–27, 2004, in Copenhagen, Denmark. Again, what I bring back to the readers of PS&C is a message of encouragement and a sense that the time has come for our interests and work to take on a more central role in the fields of both palliative care and psycho-oncology (the psychosocial aspects of care of cancer patients). The World Congress of Psycho-oncology featured psychiatric, psychosocial, and existential aspects of palliative care in cancer patients as a prominent part of the program.

With the printing and distribution of this issue of Palliative & Supportive Care (PS&C Volume 2, Number 4), we complete and celebrate the second year of publication of this rather unique scientific journal. It may seem to be a small affair really, this scientific journal business, yet it is in fact larger than one initially appreciates. It requires the immense diligence and hard work of a rather large cadre of editors, publishers, reviewers, and of course the scientists and writers who so graciously present their work into our trust. But, what has been the most profound realization of the last year is the fact that scientists and clinicians around the world actually read and appreciate our “small” journal.

There is little convincing agreement in the literature on the definition, measurement, and application of hope. The usual platitude—where there's life, there's hope—does not clarify the confusion, and clinical practice puts paid to a simplistic approach to hope. A 28 year-old man with widespread melanoma is hoping the doctor will offer him a new treatment. He hopes he will marry and have a family. The hopes to us are unrealistic—but for him they are tangible, the stuff of life, the dreams that keep him going. What should clinicians do with this man's hopes? Should we support him medically, for the sake of hope? Does hoping prolong life against death? Should we encourage unproven therapies as elixirs of hope? When hope clashes with reality and causes angst, is it better to jettison hope, or reality? What does acceptance of death mean in terms of hope? What can it mean to live without hope?

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: Recent years have shown an increase in the use of questionnaires measuring health-related quality of life to verify the quality of treatment in the field of oncology. An often used cancer-specific questionnaire is the “Quality of Life Core Questionnaire of the European Organization for the Research and Treatment of Cancer” (EORTC QLQ-C30). The purpose of this study is to analyze the psychometric properties of the EORTC QLQ-C30 (version 1) in order to determine the feasibility and appropriateness for its use in inpatient cancer rehabilitation in Germany with heterogeneous diagnoses.

Methods: The questionnaire was administrated to a sample of 972 cancer patients at the beginning of treatment and to 892 patients after treatment. Besides descriptive analysis, the statistical analyses include confirmatory analysis and the multitrait/multimethod approach to test the questionnaire's postulated scale structure (factorial validity) and its reliability (internal consistencies). The analysis also includes a comparison of responsiveness indices (effect size, reliable change index) to test the sensitivity of the instrument.

Results: The EORTC QLQ-C30 showed satisfactory levels of reliability and sensitivity, but the postulated scale structure could not be confirmed. The results illustrate that the varimax-rotated solution of a principal component analysis does not confirm the scale structure postulated by the authors. Correspondingly, the selected fit indices within the scope of the confirmatory factor analysis do not show satisfactory results either.

Significance of results: We therefore consider version 1 of the EORTC QLQ-C30 to be only limitedly useful for the routine assessment of changes in the quality of life of cancer patients in inpatient rehabilitation in Germany, especially because of the instrument's length and possible redundancies. For this reason, a scoring procedure limited to a subset of items is suggested, revealing satisfactory to good psychometric indices. However, further psychometric tests are necessary, especially with regard to validity and sensitivity.

Objective: This article describes an innovative 8-h training program that provides clinicians with the competencies necessary to conduct efficient, effective, and compassionate advance care planning discussions throughout the trajectory of life-limiting illnesses.

Method: The Advance Care Training Program (ACare) includes 6 h of group workshops and 2 h of one-on-one faculty–learner interaction. In this article, we describe the (1) objectives of ACare; (2) structure, training procedures, and educational rationale of ACare training; and (3) educational outcome studies in progress.

Results: ACare training in various forms has already been provided to over 100 medical professionals (medical students, medical residents, oncology and geriatric fellows, medical attendings, social workers, and nurses). Formative outcome data indicate considerable trainee satisfaction. Emerging summative outcome data indicate improved skills.

Significance of results: Widespread adoption of the program could increase the frequency and quality of advance care planning discussions between patients with life-limiting illnesses, their health care providers, and families.

Objective: Previous studies reveal that many terminally ill patients never receive hospice care. Among those who do receive hospice, many enroll very close to the time of death. Nationally, between 1992 and 1998, the median length of stay at hospice declined 27%, from 26 to 19 days. In our prior study of 206 patients diagnosed with terminal cancer and using hospice, we found that one-third enrolled with hospice within 1 week prior to death. Late hospice enrollment can have deleterious effects on patients and their family members. The aim of the present study was to characterize common experiences of patients and primary family caregivers as they transition to hospice, focusing on caregiver perceptions of factors that might contribute to delays in hospice enrollment.

Methods: We conducted in-depth interviews with a purposive sample of 12 caregivers selected from a population of primary family caregivers of patients with terminal cancer who enrolled with hospice in Connecticut between September 2000 and September 2001. Respondents represented different ages, genders, and kinship relationships with patients. Respondents were asked about the patient's care trajectory, how they first learned about hospice, and their experiences as they transitioned to hospice. NUD*IST software was used for qualitative data coding and analysis.

Results: Constant comparative analysis identified three themes common to the experience of transitioning to hospice: (1) caregivers' acceptance of the impending death, (2) challenges in negotiating the health care system across the continuum of care, and (3) changing patient–family dynamics.

Significance of results: Identification of these themes from the caregivers' perspective generates hypotheses about potential delays in hospice and may ultimately be useful in the design of interventions that are consistent with caregivers' needs.

Objective: To describe mental health status and its correlates among clients of three palliative care programs targeting underserved populations.

Methods: Mental Health Inventory (MHI-5) scores of clients from programs in Alabama (n = 39), Baltimore (n = 57), and New York City (n = 84) were compared.

Results: Mean MHI-5 scores did not differ among sites and were indicative of poor mental health. Significant differences were noted among sites with regard to client sociodemographics, physical functioning, and perceptions of interpersonal relations. Results of multivariate regression models estimated for each site suggest variation in the relative importance of potential predictors among sites. Whereas poorer mental health was primarily associated with history of drug dependence at Baltimore and more physical symptomatology at New York, better mental health was most strongly correlated with more positive perceptions of interpersonal relationships at Baltimore and increasing age and more positive perceptions of meaning and purpose in life at New York.

Significance of results: The data presented suggest the importance of assessing clients' history of and current need for mental health services. Evidence of a relationship between positive perceptions of meaning and purpose and better psychological function underscores the importance of existential issues for the overall well-being of those who are seriously ill.

Objective: The purpose of this study was to gather validity evidence for an innovative experience of hope scale, the Hope Differential-Short (HDS), and evaluate its clinical utility for assessing hope in advanced cancer patients.

Methods: A consecutive sampling approach was used to recruit 96 patients from an inpatient tertiary palliative care unit and three hospice settings. Each participant completed an in-person survey interview, consisting of the following measures: HDS (nine items), Herth Hope Index (HHI), hope visual analog scale (Hope-VAS) and Edmonton Symptom Assessment System (ESAS).

Results: Using factor analytic procedures, a two-factor structure for the HDS was identified, consisting of authentic spirit (Factor I) and comfort (Factor II). The HDS factors had good overall internal consistency (α = 0.83), with Factor I (α = 0.83) being higher than Factor II (α = 0.69). The two factors positively correlated with the HHI, Hope-VAS, and one of the ESAS visual analog scales, well-being (range: 0.38 to 0.64) and negatively correlated with depression and anxiety, as measured by the ESAS (range: −0.25 to −0.42).

Significance of results: This is the first validation study of the HDS in advanced cancer patients. Its promising psychometric properties and brief patient-oriented nature provide a solid initial foundation for its future use as a clinical assessment measure in oncology and palliative care. Additional studies are warranted to gather further validity evidence for the HDS before its routine use in clinical practice.

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: Despite the strong emphasis on home-based end-of-life care in the United States and the recognition of dying at home as a gold standard of quality of care, hospice home care is not a panacea and death at home may not be feasible for every terminally ill cancer patient. Admission to an inpatient hospice and dying there may become a necessary and appropriate solution to distressing patients or exhausted families. However, the factors associated with death in an inpatient hospice have not been examined in previous studies.

Methods: A prospective cohort study was conducted to investigate the determinants of death in an inpatient hospice for terminally ill cancer patients. Approximately two-fifths (40.8%) of the 180 terminally ill cancer patients in this study died in inpatient hospices over the 3-year study period.

Results: Results from Cox proportional hazards model with adjustment for covariates revealed several factors that were significantly associated with dying in inpatient hospice, as opposed to home, in a nursing home, or in the hospital. Patients were more likely to die in an inpatient hospice if they received hospice care before death (hazard ratio [HR] = 7.32, 95% confidence interval [CI]: 3.21–16.67), if they had a prestated preference to die in an inpatient hospice (HR = 4.86, 95% CI: 2.24–10.51), if they resided in New Haven County (HR = 1.70, 95% CI: 1.00–2.93), or if they experienced higher levels of functional dependency (HR = 1.05, 95% CI: 1.02–1.08).

Significance of results: The high prevalence of inpatient hospice deaths for terminally ill cancer patients in this study was related to the local health care system characteristics, health care needs at the end of life, and personal preference of place of death. Findings from this study may shed light on future directions for developing end-of-life care tailored to the needs of cancer patients who are admitted to hospices and eventually die there.

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: The purpose of this study was to evaluate the psychometric properties of the Herth Hope Index (HHI) in a representative sample of the Norwegian population.

Methods: The HHI-N was administered to 4000 people randomly selected from the Norwegian population. 1893 questionnaires were usable, yielding a response rate of 48.5%.

Results: The internal consistency of the HHI-N, estimated by Cronbach's alpha, was 0.81. Factor analysis resulted in a two-factor solution, which explained 38% of the variance. The correlation between hope and overall quality of life was 0.48 (p < 0.001), and between hope and fatigue severity −0.30 (p < 0.001).

Significance of results: Further testing, especially with regard to the dimensionality of the instrument, is recommended.

Objective: Humor and laughter are present in most of human interaction. Interactions in health care settings are no exception. Palliative care practitioners know from experience that humor and laughter are common in palliative care despite the seriousness of the care context. Research establishing the significance of humor in care of the dying is limited.

Methods: Clinical ethnography conducted in a 30-bed inpatient palliative care unit served as the means of exploring the functions of humor in care of the dying. Clinical ethnography is intended for examination of the human experience of illness or of caregiving in an interpersonal context (Kleinman, 1992). The method emphasizes the subjective experience and the realm of communication and interaction for both patients and caregivers. Data were collected through participant observation, informal interviews with patients and families, and semistructured interviews with members of the health care team.

Results: Humor and laughter were widespread and important in the research setting. An overall attitude of good humor prevailed. Within that atmosphere, humor served myriad functions. Functions were identified in three overarching themes; building relationships, contending with circumstances, and expressing sensibility. Humor among patients, families, and staff most commonly served to build therapeutic relationships, relieve tension, and protect dignity and a sense of worth. Humor was particularly significant in maintaining collegial relationships, managing stressful situations, and maintaining a sense of perspective.

Significance of results: Findings established the significance of humor and laughter as humanizing dimensions of care of the dying and contributes to the volume of research supporting evidence-based practice.

Objective: Health care professionals and policy makers acknowledge that spiritual needs are important for many patients with life-limiting illnesses. We asked such patients to describe their spiritual needs and how these needs may impinge on their physical, psychological, and social well-being. Patients were also encouraged to explain in what ways their spiritual needs, if they had any, could be addressed.

Methods: We conducted two qualitative interviews, 3 months apart, with 20 patients in their last year of life: 13 patients with advanced cancer and 7 with advanced nonmalignant illness. We also interviewed each patient's general practitioner. Sixty-six interviews were tape-recorded, transcribed, and analyzed.

Results: Patients' spiritual needs centered around their loss of roles and self-identity and their fear of dying. Many sought to make sense of life in relation to a nonvisible or sacred world. They associated anxiety, sleeplessness, and despair with such issues, which at times resulted in them seeking support from health professionals. Patients were best able to engage their personal resources to meet these needs when affirmed and valued by health professionals.

Significance of results: Enabling patients to deal with their spiritual needs through affirmative relationships with health professionals may improve quality of life and reduce use of health resources. Further research to explore the relationship between spiritual distress and health service utilization is indicated.

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: Palliative care services have made significant contributions to those needing end-of-life care, but the effect of these services on informal caregivers is less clear. This article reviews the literature and examines the influences of palliative care services on caregivers of people who are dying of cancer, HIV-related illnesses, and illnesses of later life.

Methods: Based on questions that we developed from the literature review, we conducted six focus groups in Toronto, Thunder Bay, and Ottawa, Canada, with informal caregivers about their experiences with caregiving and with palliative care services.

Results: We outline the major themes relating to the 42 focus group participants' experiences of giving support and getting help.

Significance of results: Our findings help us better understand the common concerns of caregivers of terminally ill seniors, people with HIV/AIDS, and people with cancer. The article discusses the implications of participants' experiences for palliative care service providers.

Objective: Dignity Psychotherapy has shown great promise as a value-affirming intervention for patients with advanced disease. We delivered the Dignity Psychotherapy intervention in a feasibility study of a series of eight cancer patients via videophone technology to deliver the therapy into their homes.

Methods: Once eligible patients were consented on this IRB-approved study, they completed baseline assessments and were scheduled to have the videophone placed in their homes. The Dignity Therapy sessions then encompassed a first session, which was transcribed and edited, followed by a second session to go over the edited transcript and allow the patient to make changes. Patients then filled out follow-up questionnaires and had the telemedicine equipment removed from their homes, and their legacy document delivered.

Results: Participants had a mean age of 56.32 years (range = 41–66, SD = 7.65) and were diagnosed with lung (n = 5, 62.5%), breast (n = 2, 25%), or colon cancer (n = 1, 12.5%). They reported overall benefit from the intervention along with a high level of satisfaction. We were able to deliver the intervention in a timely fashion, with minimal length between sessions and transcript delivery and few technical difficulties.

Significance of results: Telemedicine can greatly extend the benefits of Dignity Psychotherapy by bringing it to patients who are dying at home. Our very preliminary work suggests that delivering the intervention to patients who are too ill to leave their homes or who are in rural locations may be a feasible way to help them.

Objective: The aim of this project was to develop an appropriate and valid instrument for assessment by medical professionals in Japanese palliative care settings.

Methods: We developed a Japanese version of the Support Team Assessment Schedule (STAS-J), using a back translation method, and tested its reliability and validity. In the reliability study, 16 nurses and a physician who work in a palliative care unit evaluated 10 hypothetical cases twice at 3-month intervals. For the validity study, external researchers interviewed 50 patients with matignancy and their families and compared the results with ratings by the nurses in the palliative care unit.

Results: Our results with hypothetical cases were: interrater reliability weighted κ = 0.53–0.77 and intrarater reliability weighted κ = 0.64–0.85. In the validity study comparing nurse evaluations and the results of interviews with patients and families, complete agreement was 36–70%, and close agreement (±1) was 74–100%. As a whole, weighted κ were low: between −0.07 and 0.51. Our results were similar to those in the United Kingdom and Canada.

Significance of results: Although this research was conducted under methodologically limited conditions, we concluded that the STAS-J is a reliable tool and its validity is acceptable. The STAS-J should become a valuable tool, not only for daily clinical use, but also for research.