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.

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: 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: 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: 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.

Objective: We reviewed our experience with 28 consecutive children referred for assessment and intervention. These were the children of patients with terminal cancer referred to the Palliative Care and Symptom Control Service. In all cases the dying parent was a biological parent.

Methods: Eleven parameters were assessed in each of 29 children and their incidence was calculated. The children and their parents were seen in a semistructured interview, together as well as separately. The parameters were: seeking reassurance (82), becoming a caretaker (79), inability to separate from parent (79), anger about feeling abandoned (68), despair (57), guilt (54), discipline problems, aggressive behavior (46), denial (39), blame of others (21), and fear for the child's own health (18).

Results: Our results suggest that children with dying parents manifest significant distress as well as a greater understanding of their parent's illness than is usually suspected.

Significance of results: Timely intervention by a child psychiatrist or other mental health professional with proven competence in working with children can help children to better cope with the death and dying of their parent and ameliorate the process of bereavement following the parent's death.

Because of our small sample, we cannot generalize about all of the findings. Further research is required to characterize the level of distress in the children and the long-term impact in their overall adjustment to life.

Objective: The faithful translation of the English version of the Schedule of Attitudes toward Hastened Death (SAHD) into Greek and its validation as an assessment tool in terminally ill cancer patients receiving palliative treatment.

Methods: 120 terminally ill cancer patients attending a Palliative Care Unit, at the University of Athens, Greece, between June 2003 and November 2003 for palliative treatment.

Results: SAHD would be a useful instrument for measuring desire for hastened death with valid psychometric properties in a Greek cancer population. The SAHD demonstrated high reliability. Desire for hastened death was significantly associated with Hospital Anxiety and Depression Scale (HAD) depression (r = 0.607, p < 0.0005) and substantially correlated with HAD anxiety (r = 0.502, p < 0.0005). “Pain intensity” had a moderate correlation with SAHD scores (r = 0.28, p = 0.01) and SAHD scores correlated significantly with “pain interference in mood” (r = 0.38, p = 0.01) and in “enjoyment of life” (r = 0.34, p = 0.03). SAHD correlation with quality of life was statistically significant (r = −0.38, p < 0.01) as was health status (r = −0.36, p < 0.01). Patients with a Poor Performance Status (from Eastern Cooperative Oncology Group scale) correlated significantly with high scores in SAHD (p = 0.038). Factor analysis supported the unidimentionality of the measurement.

Significance of results: SAHD could be a useful and valid instrument for measuring desire for hastened death in Greek terminally ill cancer patients.

Objective: Research indicates that children benefit from supportive interventions to help them cope with the loss of a loved one. The aim of this pilot study was to evaluate children's perceptions of the effectiveness of a grief camp.

Methods: Semistructured interviews were performed with 18 children who attended a weekend-long grief camp. Children also responded to follow-up interviews via telephone. Their parents also completed surveys before camp began and either after camp ended or at a follow-up evaluation. Data were analyzed using descriptive statistics and content coding to uncover key themes in the interviews.

Results: Children reported that art activities helped them to express feelings about their grief and release feelings of sadness and worry related to the death. Parents and children felt that the camp was a positive experience and that the children benefited from being in groups with peers who had also lost family members.

Significance of results: Evaluating the impact of grief camps, using practical methods such as the ones for this study, is important, as these camps are becoming more popular interventions. Children and parents may benefit from contact at specified follow-up periods after camp to determine if they would benefit from further therapy. Results also provide evidence of the success of this program, which supports the need for funding these types of interventions.

Cancer pain generally has a physical cause exacerbated to varying degrees by psychological, social, and spiritual factors. This article describes the case history of a cancer patient with severe pain for which no physical cause could be found, who was subsequently found to have a history of somatization disorder. There follows a review of the literature, with specific reference to the difficulties of managing somatization in the context of cancer.

Hope is the anticipation of something better to come and an essential component of life. It is a complex notion that is fundamental to the promise of health care. Initially, hope is for cure or restoration of health but in terminal illness, when there is no longer the possibility of cure, hope rests in the knowledge and skill of the medical scientist to alter the course of disease and to prolong life. It is this expectation for renewed physical being that is the focus of every intervention. At the end of life, when science can do no more, hope endures, but the focus of hope changes. It becomes hope to find meaning in life, as it was lived, and in the time that remains. For most, however, the end of life unfolds in the scientific milieu of the hospital where the significance of redefining hope may not be considered, and many die without hope. The purpose of this article is to explore the meaning of hope, to highlight the necessity of redefining hope at the end of life, and to emphasize the importance of sanctuary in engendering hope through relationship. Hospice is proposed as a sanctuary for the final days, where the patient, family, and health professional discover a new meaning of hope through shared human experience.

The value of integrating palliative with curative modes of care earlier in the course of disease for people with life threatening illnesses is well recognized. Whereas the now outdated model of waiting for people to be actively dying before initiating palliative care has been clearly discredited on clinical grounds, how a better integration of modes of care can be achieved, financed and sustained is an ongoing challenge for the health care system in general as well as for specific institutions. When the initiative comes from a hospital or academic medical center, which may, for example, begin a palliative care consultation service, financial benefits have been well documented. These palliative care services survive mainly by tracking cost savings that can be realized in a number of ways around a medical center. We tried to pilot 3 simple models of potential cost savings afforded to hospice by initiating a palliative care program. We found that simple models cannot capture this benefit (if it in fact exists). By adding palliative care, hospice, while no doubt improving and streamlining care, is also taking on more complex patients (higher drug costs, shorter length of stay, more outpatient, emergency room and physician visits). Indeed, the hospice was absorbing the losses associated with having the palliative care program. We suggest that an avenue for future exploration is whether partnering between hospitals and hospice programs can defray some of the costs incurred by the palliative care program (that might otherwise be passed on to hospice) in anticipation of cost savings. We end with a series of questions: Are there financial benefits? Can they be modeled and quantified? Is this a dilemma for hospice programs wanting to improve the quality of care but who are not able on their own to finance it?

Clinical update: Literature abstracts.

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