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.

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: 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: 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: 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 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: 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: 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.

The codes of ethics of the National Hospice and Palliative Care Organization and the National Association of Social Workers support ethical standards of client self-determination and confidentiality. Lack of societal consensus on the parameters of a terminally ill person's right to die continues to confound at times the health care field, including hospice programs. This article explores an actual case where a hospice social worker faced an ethical dilemma related to the sanctity of life versus patient autonomy. While a more seasoned social worker might have chosen a different alternative to the dilemma, this case illustrates the importance of creating an interdisciplinary rather than multidisciplinary hospice team and the need for ongoing dialogue on how to support patient choice.

Dr. Alan Morgenstern joined the psychiatry faculty at Oregon Health and Science University (OHSU) in 1965. He also served as chairman of psychiatry at Good Samaritan Hospital and Medical Center in Portland, Oregon. His many accomplishments include his part in a World Health Organization Travel-Study Fellowship. He served as a senior examiner for the American Board of Psychiatry and Neurology and he published a critique of this process, which resulted in a humanization of the experience for examinees. While teaching at OHSU he had a tremendous impact on generations of students who were impressed by his humane approach to medicine. He received the OHSU Meritorious Achievement Award for Teaching. He also served as a captain in the United States Air Force School of Aerospace Medicine. His close friend, Harold Boverman, M.D., wrote, “He loved his family, his work, his patients, his friends, and his music; his license plate read ‘etude.’”

Dr. Morgenstern contacted us regarding his hope that we would facilitate publishing this account of his experience as a hospice patient. This represents an edited version of his manuscript. L.G. and H.B.

From earliest times, sages have advised us to become comfortable with transience, more than that, to be at peace with our approaching death and to keep it in constant view. Whatever the benefits of such a perspective, they must surely be harvested in abundance by those working in Palliative Care! An ongoing personal cost/benefit analysis of our daily confrontation with death is for many a legacy of the trade. “Why” questions are our persistent companions. They have colored my recent days as I holiday with my family in a cottage on Lac Massawippi in Quebec.

“Cultured Mourning” and “Solstice of My Life”

Abstract categories: New Measures and Symptom Control