Four days after Mother's Day, May 15, 2003, my dear friend Marcy Dempsey passed away. Her personal reflection, “A Toolbox for Living: Cancer Reflections” can be read within the current issue of Palliative and Supportive Care (P&SC). I do wish she were still here, not so much just to see this piece come out, but to grace us longer with her gentle spirit, boundless energy, and sage wisdom.

In a recent British Medical Journal editorial, Ruth Macklin pronounced that dignity is “a useless concept in medical ethics and can be eliminated without any loss of content” (Macklin, 2003). The published responses offered a unanimous, firm rebuttal, arguing that dignity is somehow foundational to all we do, or ought to be doing, within the practice of medicine or medical research. Whereas Macklin argued that dignity lacked definitional specificity, the words of U.S. Supreme Court Justice Brennan were invoked by respondent Jayson Rapoport: “I can't define dignity, but I know it when I see it” (Rapoport, 2003). Whether dignity has no place or a pivotal place within the medical lexicon, what seems clear is that discussions pertaining to dignity leave little room for indifference.

We are extremely proud and gratified to present the inaugural issue of our new international palliative care journal, Palliative & Supportive Care (P&SC). P&SC is the first international journal of palliative medicine that focuses on the psychiatric, psychosocial, spiritual, existential, ethical, philosophical, and humanities aspects of palliative care. The journal's aim is to serve as an educational resource for practitioners from a wide array of disciplines engaged in the delivery of care to those with life-threatening illnesses along the entire continuum of care, from diagnosis to the end of life. The journal also seeks to both stimulate and provide a forum for research in the psychiatric, psychosocial, and spiritual components of palliative care.

In this issue of Palliative & Supportive Care, we are pleased to present recent work from Dr. E.R. Goy et al. (“Oregon hospice nurses and social workers' assessment of physician progress in palliative care over the past 5 years”) regarding their observations of the impact of the legalization of physician-assisted suicide in the state of Oregon. In 1977, Oregon enacted the Death with Dignity Act, which legalized physician-assisted suicide for terminally ill patients. In the past 5 years, a relatively small number of terminally ill patients in Oregon have requested assisted suicide and, after evaluation, were provided with physician assistance (Ganzini et al., 2002).

Objective: The aims of this study were to describe hope in a large sample that was drawn from the general Norwegian population and to examine how sociodemographic and health-related variables were related to hope.

Methods: Of 4,000 adult citizens, randomly drawn from the National Register, 1,912 (49%) returned the Norwegian version of the Herth Hope Index (HHI).

Results: When demographic and health-related variables were controlled for, age, gender, marital status, and employment status were significantly related to hope. The most important health-related variable was self-assessed health status, with participants who were satisfied with their health reporting significantly higher levels of hope. Participants who indicated that they had a chronic disease reported significantly higher hope scores compared to those without a chronic disease. Older men, individuals who were receiving a pension or were unemployed, and individuals who were widowed or unmarried reported the lowest levels of hope. In this study, an individual's subjective evaluation of his/her health was the most important health-related predictor of hope.

Significance of the research: The most important health-related variable that predicted hope was self-assessed health in that participants who were satisfied with their health reported higher levels of hope. This finding suggests that an individual's subjective assessment of health is a better predictor of hope than the presence a chronic disease. Knowledge about levels of hope in the general population can be used as reference values against which an individual score or a group mean may be compared.

Spiritual and religious issues are often important to people with serious illnesses. Spiritual beliefs and religious ceremonies may help patients near the end of life find meaning and comfort. Comprehensive palliative care ought to address patients' spiritual and religious needs and concerns as well as their physical distress. Puchalski et al. (2003) document the paucity of studies that collect empirical data on spiritual and religious issues in palliative care. They argue convincingly that more studies are essential in order to develop evidence-based standards for appropriate ways to address patients' spiritual and religious needs at the end of life. Such research would help us better understand how spiritual and religious concerns, beliefs, practices, and interventions might impact outcomes of end-of-life care. For instance, routine inquiry by physicians about patients' spiritual and religious concerns might lead to such outcomes as better relief of physical symptoms or improved quality of life. Puchalski et al. (2003) call for more empirical research on these important topics and also the development of better measures. For example, they point out the need for measurements of religiousness that account for more than a patient's denomination. They also found that very few of the available scales had undergone evaluation for internal consistency or test–retest reliability. Moreover, many existing instruments concerning spirituality are not validated for patients near the end of life.

Objective: This study aimed to clarify which older adults benefit most from a control-enhancing intervention; in particular, whether cognitive functioning or locus of control might moderate the benefit derived.

Methods: Nursing home residents were randomly assigned to two conditions: (1) a control-enhanced condition that provided the option of caring for a plant (n = 10), and (2) a comparison condition that monitored any change under the standard of care (n = 10). Comparison group participants were subsequently offered the intervention, which led to a total of 17 intervention participants.

Results: Cognitive function and locus of control were found to significantly moderate the effects of the control-enhancing intervention on residents' perceived health competency, but not depression or life satisfaction.

Significance of results: Interventions for nursing home residents could be tailored to fit specific needs. Screening for cognitive function and locus of control may help predict who is likely to benefit from control-enhancing interventions.

Background: The 1997 enactment of the Oregon Death with Dignity Act intensified interest in improving physician education and skills in caring for patients at the end of life.

Objective: To obtain hospice nurse and social workers' collateral ratings of efforts made by Oregon physicians to improve their palliative care skills over the previous 5 years.

Design: A descriptive survey of nurses and social workers from all 50 Oregon outpatient hospice agencies.

Measurement and Results: Oregon hospice nurse (N = 185) and social worker (N = 52) respondents, who had worked in hospice for at least 5 years, rated changes they observed over the past 5 years in physicians' approach to caring for their hospice clients. Six characteristics, including willingness to refer patients to hospice, willingness to prescribe sufficient pain medications, knowledge about using pain medications in hospice patients, interest in caring for hospice patients, competence in caring for hospice patients, and fearfulness of prescribing sufficient opioid medications were evaluated. Positive changes were endorsed by the majority of respondents on all but the scale measuring fearfulness of prescribing opioid medications; on the latter, 47% of nurses rated doctors as less fearful, whereas 53% rated them as about the same or more fearful than they were 5 years earlier.

Conclusions: Most respondents rated Oregon physicians as showing improvements in knowledge and willingness to refer and care for hospice patients.

Objective: The purpose of this article is to evaluate an 8-week pilot intervention based on Social Cognitive Theory to improve quality of life for women with breast cancer.

Methods: A total of 32 breast cancer patients were randomized to either the intervention or standard care. Outcome variables included quality of life, mood, self-efficacy, outcome expectations, and self-regulation.

Results: Effect sizes were calculated to examine the impact of the intervention, with moderate to large effect sizes found for several subscales of the outcome expectations variable: learning about cancer and treatment (d = 0.85), having a positive attitude (d = 0.54), talking about cancer (d = 1.02), engaging in relaxation (d = 0.62), and setting goals (d = 1.58).

Significance of results: A nonparametric sign test was conducted, indicating that women in the intervention condition either improved more or showed less decline than the women in standard care, p = .034, two-tailed. Implications and suggestions for the content and delivery of future psychosocial interventions with cancer patients are reviewed.

Objectives: Caregiver outcomes among those caring for symptomatic advanced cancer patients at VA Medical Centers have not been well reported. The purposes of this study were (1) to identify the caregiver characteristics and their unmet needs; (2) to examine the association between caregiver unmet needs, caregiver burden, and caregiver satisfaction; and (3) to identify the independent predictors of different caregiver outcomes.

Methods: One hundred caregivers completed three caregiver outcomes instruments: Family Inventory of Needs (FIN), Care Strain Index (CSI), and Family Satisfaction with Advanced Cancer Care (FAMCARE). The caregivers' demographics and their function, depression, health status, and social support status as well as the caregivers' perception of the patients' unmet needs (PPUN) were obtained. Principal component analysis was performed to examine the underlying dimensions of caregiver outcome measures. Pearson correlation and stepwise multivariate regression analyses were performed.

Results: The median number of unmet needs was 2 and the median CSI score was 4. Most of unmet needs were related to information needs (needing more information related to home care, finding help with the problems at home, and disease prognosis) and symptom management. The majority of caregivers were satisfied or very satisfied by the care patients received. Spouse caregivers (N = 60, 60%) were significantly older (p = 0.006) with higher unemployment rates (p = 0.001), higher depression scores (p = 0.04), and lower social support scores (p < 0.0001) than nonspouse caregivers (N = 40, 40%). The PPUN predicted caregiver burden and the presence of caregiver unmet needs independently. The presence of caregiver unmet needs was the only independent predictor of caregiver satisfaction. Caregivers with a high PPUN and higher depression score experienced a higher burden.

Significance of the research: The caregiver outcome model is proposed and needs to be further validated in a new cohort of caregivers.

Objectives: The purposes of this study were to study symptomatic metastatic cancer patients' knowledge and attitudes toward end-of-life (EOL) care and to examine how patient-perceived health status affects attitudes toward EOL care and survival.

Methods: From 1999 to 2002, 254 symptomatic metastatic cancer patients at the VA New Jersey Health Care System completed the Vermont Voices on Care of the Dying Questionnaire. Survival status and location of death were obtained. Descriptive statistics and the chi square method were used to assess the differences between African Americans (N = 109) and Caucasians (N = 135), and between different patient-perceived health status groups. A log-rank test was performed to assess for differences in median survival length between different patient-perceived health-status groups.

Results: Veterans' responses to the Vermont questionnaire showed knowledge deficits regarding EOL care. There was wide variation in self-rankings of health status: 45.6% of patients rated their illness as serious and life threatening, 18.9% considered their health problem significant but not life threatening, 2.8% thought they were in good health, and one-third of patients were unsure about their health status. Most patients (86.2%) preferred physician frankness when communicating bad news and 61.8% preferred family involvement in EOL discussions. African American patients were less likely to have completed advance directives (p < 0.0001), to have knowledge about hospice programs (p < 0.00001), and to feel capable of assessing their health situation (p = 0.04). Patient-rated health status affected completion rates of advance directives and survival.

Significance of the research: These findings demonstrate knowledge deficits and racial differences in attitudes and values toward EOL care in veterans with cancer. The Vermont questionnaire enables patients to state their EOL preferences but may not be detailed enough for clinical applications. Patient-rated health status may be an important explanatory variable for EOL preferences and length of survival.

Objective: There has been increasing recognition and acceptance of the importance of addressing existential and spiritual suffering as an important and necessary component of palliative medicine and end-of-life care in the United States. This paper seeks to empirically and systematically examine the extent to which there is an adequate scientific research base on spirituality and its role in palliative care, in the palliative care and hospice literature.

Methods: We sought to locate all empirical studies published in five palliative medicine/hospice journals from 1994 to 1998. The journals included: American Journal of Hospice and Palliative Care, Journal of Palliative Care, Hospice Journal, Palliative Medicine, and The Journal of Pain and Symptom Management. Journal contents were searched to identify studies that included spiritual or religious measures or results. Case studies, editorials, and theoretical or descriptive articles were not included in the search.

Results: During the years 1994–1998, 1,117 original empirical articles were published in the five journals reviewed. Only 6.3% (70 articles) included spiritual or religious variables. This percentage, while low, was better that the 1% previously reported in an examination of studies published in Journal of the American Medical Association, The Lancet, and New England Journal of Medicine.

Significance of results: While researchers in the field of palliative care have studied spiritual/religious variables more than other areas of medicine, the total percentage for studies is still a low 6.3%. To move the field of palliative medicine forward so appropriate guidelines for spiritual care can be developed, it is critical that good research be conducted upon which to base spiritual care in an evidence-based model. Recommendations are made for future studies on spiritual care in palliative medicine.

Objective: In discussing spiritual care of patients with terminal cancer, it is important to clarify the structure of spiritual pain to be evaluated.

Methods: In this article, spiritual pain is defined as “pain caused by extinction of the being and the meaning of the self,” and its structure was evaluated according to the three dimensions of the human being, that is, a being founded on temporality, a being in relationship, and a being with autonomy.

Results: As a result, spiritual pain of patients with terminal cancer could be described as meaninglessness of life, loss of identity, and worthlessness of living derived from loss of the future, loss of others, and loss of autonomy of a dying individual.

Significance of results: On the basis of these understandings, the author deduced principles of spiritual care of terminally ill cancer patients as recovery of the future beyond death, others beyond death, and autonomy toward death in each dimension of the human being.

Objective: Cachexia is a problematic wasting syndrome experienced by some cancer patients that can lead to early death in these patients. The purpose of the present study was to examine the criterion validity and sensitivity and specificity of two single items from a depression scale to rapidly screen patients in ambulatory oncology clinics for cancer-related nutritional risk and cachexia.

Methods: A chart review was conducted of 50 randomly selected patient profiles. Patients' responses to item 5 (“I eat as much as I used to”) and item 7 (“I notice I am losing weight”) of the Zung Self Rating Depression Scale (ZSDS) were compared against the Scored Patient-Generated Subjective Global Assessment (PG-SGA) as well as to Body Mass Index (BMI) scores and weight at two time periods.

Results: Item 5 of the ZSDS was significantly related to initial weight (F3,45 = 6.06, p < 0.001), weight at 6-month follow-up (F3,27 = 4.16, p < 0.05), BMI score (F3,46 = 2.89, p < 0.05), and nutritional risk on the PG-SGA (F3,45 = 5.80, p < 0.01). Item 7 of the ZSDS was only a significant predictor of nutritional risk as measured by the PG-SGA (F3,46 = 6.01, p < 0.01). When the two items were combined to form a two-item scale, it maintained the individual items' significant relationship to the PG-SGA (F1,48 = 13.99, p < 0.001). Using this as the criterion for identifying nutritionally at-risk patients, the two-item screen yields a sensitivity of 50% and specificity of 88%.

Significance of the research: It is concluded that a single item or a combination of two items can yield a reliable initial screen for identifying patients who might be at nutritional risk for the development of cachexia. Further study is needed in prospective trials to further explore the utility of these items.

Objective: The multidimensional aspect of pain suggests the use of multimodal interventions. The Memorial Sloan-Kettering Cancer Center has recently utilized the art therapy modality to help patients communicate the painful side of their illness in such a way that they can feel understood and respected. In this paper we describe a simple innovative art therapy intervention that we have developed within the Art Therapy Service in the Psychiatric Department of Memorial Sloan-Kettering Cancer Center.

Method: The patients work with a Body Outline as a starting template, together with the art therapist, in sessions lasting approximately 45 minutes. They are encouraged to fill the space inside and outside the Body Outline. They can use colored pastels, markers, or watercolor or cut out images for a collage.

Results: Seventy hospitalized adult cancer patients, 60 women and 10 men, used this intervention between January 1999 and May 2000. We have analyzed the variety of responses from the 70 patients, and three main groups have emerged, which have focused on the following issues: (1) visualization of physical pain, (2) communication of emotions, and (3) search for meaning/spirituality.

Significance of results: The results suggest that because of its abstract symbolic feature, the Body Outline is a very flexible therapeutic intervention. It must be offered within the relationship with the art therapist, and it may fulfill quite a variety of expressive needs, from the description of physical pain to the elaboration of spiritual longings.

Objective: The purpose of this study was to describe quality of life (QOL) and psychosocial and spiritual issues among patients receiving hospice care.

Methods: A questionnaire addressing QOL, spirituality, optimism, loss, fears about the terminal process and death anxiety was administered to 66 adults receiving care from 14 hospices. The physical components of QOL (physical symptoms and physical well-being) were rated lower than the psychosocial and spiritual aspects (support, existential well-being, psychological symptoms).

Results: Respondents had a strong spiritual connection and a strong sense of hope. Although these individuals did not express anxiety or fear about death, there were concerns about the dying process itself. Also, although most felt at ease with their current situation, respondents were concerned about how their illness was affecting their family. Financial and legal issues did not concern most of these individuals.

Significance of results: There were few significant associations between patient characteristics and the QOL or other psychosocial or spiritual issues addressed. Among this older terminally ill population receiving hospice care, whose functional status was fair and for whom physical symptoms were troublesome, QOL persisted and a positive outlook prevailed.

Objective: To determine how home hospice patients deal with their impending death and whether there is a need for greater involvement of mental health professionals in the care of patients dying at home.

Method: In a pilot study, 12 female home hospice patients with advanced cancer and a median survival time of 42 days were assessed using structured interviews and brief questionnaires. Topics of inquiry included facing death, fear of death, pain, fatigue, depression, and anxiety. Three key themes were extracted from the information reported by the women: (1) confronting the issue of death, (2) fear of dying and death and its correlates, and (3) spirituality/religious faith and its role in mitigating fear of death.

Results: First, all subjects reported thinking about their approaching death. For half of them, this thought was bothersome and these women were frequently troubled by unresolved issues and higher anxiety, pain, and fatigue. The majority of the subjects expressed a desire to actively discuss their impending death. Second, more than half of the patients reported being afraid of death and high death anxiety was associated with fear of dying in pain, high peak or usual pain, unresolved issues, and difficulty in parting with family in death. Third, most subjects experienced their religious faith as an important source of comfort and strength.

Significance of results: A substantial subgroup of home hospice patients expressed problems dealing with their approaching death. These problems are amenable to psychological treatment, such as fear of death, unresolved issues, parting with family, and pain. The findings, thus, highlight the need for close collaboration of mental health professionals with home hospice institutions.

Objective: To investigate and document the effects of breathlessness on the everyday lives of patients with cancer and COPD and their carers. This subject has been little researched, although dyspnoea is recognized as a disabling, distressing symptom. The number of breathless people is increasing as patients with all types of cardio-respiratory disease live longer.

Methods: Patients with severe COPD and cancer and their carers were interviewed at home using a semistructured format to record their perceptions of the impact of breathlessness, the help they had received from medical and caring services, and their ideas on how these could be improved.

Results: 10 patients with COPD (6 male) and 10 with cancer (6 male) and their spouses were interviewed. All patients found breathlessness frightening, disabling, and restricting. Patients developed a stoical, philosophical approach in order to live with dyspnoea and the difficulties it imposed: this was also an important way of reducing the emotional impact of breathlessness. Patients' spouses suffered significantly, experiencing severe anxiety and helplessness as they witnessed their partners' suffering and felt powerless to reduce it. The restrictions imposed by breathlessness affected their lives profoundly. Support of all kinds, practical, medical, and psychosocial was highly valued but was provided inconsistently and sporadically. Where help was given it came most frequently from general practitioners (GPs, family physicians) and specialist respiratory nurses.

Significance of results: This study is the first to document the psychosocial needs of carers, which are not adequately recognized or addressed at present. Patients and carers may feel most isolated and need support outside the working hours of most services and future provision needs to reflect this. Patients with cancer experience a more rapid onset of breathlessness. More clinicians need to be educated in the management of chronic breathlessness so known helpful strategies are more widely employed.

Objective: Several studies have concluded that family members in palliative home care want information about the patient's disease. The aim of this study was to describe family members' perceptions of their motivation for receiving information about the patient's disease.

Method: Semistructured tape-recorded interviews were performed with 20 family members of patients with incurable progressive cancer who were admitted to hospital-based home care in Sweden. Data were analyzed using a qualitative phenomenographic method.

Results: Family members justified their informational needs by emphasizing that they needed to understand and confirm what would happen when the disease progressed, to be mentally prepared for the future, to organize their daily life, to be a source of information to others, and that receiving information was a natural right.

Significance of results: This study has revealed some explanations as to why family members want information. In clinical practice, it is important that palliative care team members are aware of family members' level of knowledge and their need for information, as this mental preparation is important.

Objective: Spirituality has been neglected when assessing the well-being of cancer patients. Traditionally, researchers have focused on areas such as physical, social, and emotional functioning. However, there is a potential for spirituality to have a large impact on quality of life in patients with cancer. The current study was conducted to investigate the relationship between spirituality and boredom, constraint, social contact, and depression.

Methods: A total of 100 oncology patients completed several assessment instruments, including the Purposelessness, Under-stimulation, and Boredom (PUB) Scale, Functional Assessment of Cancer Therapy Scale–Anemia, Brief Zung Self-Rating Depression Scale (BZSDS), Cancer Behavior Inventory, Systems of Belief Inventory, and 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%) and 40 men (40%). A regression analysis conducted to explore the impact of the variables on quality of life found only the BZSDS (R2Δ = .650, F = 180.392, p < .001) and the PUB Scale (R2Δ = .077, F = 26.885, p < .001) were significant predictors of quality of life. Another set of regression analyses were conducted to explore whether spirituality had a mediating effect on this relationship, but the mediated model was not supported.

Significance of results: We conclude that spirituality and boredom are difficult concepts to define, operationalize, and measure, but crucial to our understanding of quality of life in advanced cancer. More research is needed to clarify the nature of the interrelationships between these important concepts.