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.

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: 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: 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.

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.

Objective: Physical abuse is one of the most important public health problems, but little is known about physical abuse of cancer patients. The objects of this study are (1) to identify whether cancer patients have sustained physical abuse; (2) to explore clinical characteristics of the abused patients.

Methods: We reviewed 584 cancer patients referred to our psychiatry clinic by a cancer center hospital and investigated whether there were victims of physical abuse among these patients. We also investigated psychiatric characteristics of the abused patients.

Results: Of these 584 patients, three patients were recognized as victims of physical abuse at the time of referral. The perpetrator of physical abuse was their husband (domestic violence) in all three cases. All three patients had sustained physical abuse from their husbands for years before being diagnosed with cancer. In addition to physical abuse, all three patients had sustained emotional abuse (e.g., threat or intimidation) from their husbands. Psychiatric diagnoses of all three patients fulfilled the DSM-IV criteria for post-traumatic stress disorder (PTSD) and the traumatic event was mainly physical abuse by their husbands.

Significance of results: Oncologists and psychiatrists should pay greater attention to the psychosocial and environmental problems of cancer patients and inquire about the presence of physical abuse in suspected cases. Medical staff should also know that early multidisciplinary interventions in addition to cancer treatments are needed for victims of physical abuse among cancer patients and that these interventions are necessary to improve compliance with treatment and proper decision making.

Objective: This article describes how a Multidisciplinary Pain Management Group was set up in a palliative care unit, and outlines the ways that the group works with different patients. We place these comments in the context of the wider representations of pain.

Methods: Our observations of patients seen by the multidisciplinary team.

Results: We tentatively propose that where the patient's pain has certain characteristics it may require a different approach. Patients who are older, with a lengthy treatment history, may require a different input than younger patients, who may have a number of factors that further complicate their experience of pain. We use our extensive experience with mesothelioma patients to draw a further important distinction between this patient group and other patients.

Significance of research: Our observations suggest the need to allow sufficient time for intensive psychological work to be done with mesothelioma patients in order for pharmacological interventions to be effective.

Objective: Neuroleptic malignant syndrome (NMS) is a life-threatening reaction to neuroleptics. Several prospective studies have reported NMS occurrence rates ranging from 0.07% to 2.2% of patients receiving neuroleptics. However, few occurrences of NMS have been reported in cancer patients despite frequent complications of cancer and its treatment by mental disorders managed with neuroleptic drugs. Exhaustion, dehydration, and malnutrition are considered risk factors for NMS, and cancer patients represent a high risk group for NMS.

Methods: We describe a patient with metastatic chondrosarcoma who had received frequent neuroleptic injections prior to brain surgery and developed NMS in the intensive care unit immediately after surgery. The patient showed delirium, hyperpyrexia, tachycardia, diaphoresis, and extrapyramidal symptoms. After a diagnosis of NMS was made, supportive care and careful monitoring were carried out, and the patient recovered over an interval of 11 days.

Results and significance of the research: Clinical NMS studies have been conducted mainly in psychiatric units, but NMS can occur wherever psychotropic drugs are administered. NMS can be difficult to diagnose due to multiple complicating factors in cancer treatment, but the diagnosis is highly important given the risk of death. Recognition of prodromal NMS symptoms can facilitate actions to decrease morbidity and mortality. It is suggested that special attention to cancer patients undergoing psychopharmacologic treatment is required in clinical oncologic practice.

From time immemorial the stars have been solicited to guide us. For mariners using an astrolobe to find their way across the oceans. For philosophers to reflect on the infinite and eternal. For lovers to dream of the future.

We are born. We live. We die. In between birth and death is a life that is filled with joy and sadness, laughter and tears, tragedy and triumph, suffering and healing. This life can be long or short in duration. The events in our lives can be given meaning or appear to be absent of meaning. The events in our lives can be given value and judged as “good” or “bad,” “just” or “unjust,” or they can be interpreted as random valueless events. One's perspective on these aspects and events of human existence are often shaped by our religious beliefs (or lack of them), our experiences, and our instincts. Ultimately, however, the task of every human being is to find the means by which one can live a mortal life that is inevitably characterized by finiteness and the existential truths that have been described above. Simply put, the challenge of life is to learn how to balance hope and despair, to learn how to live with the inevitability of death and suffering.

Poem: The Old Man

Clinical update: Literature abstracts.

Calendar of events.