The case of Terri Schiavo resulted in substantial media attention about the use of artificial nutrition and hydration (ANH) especially by percutaneous endoscopic gastrostomy (PEG). In this article, I review ethical and legal principles governing decisions to choose or forgo ANH at the end of life, including issues of autonomy and decision-making capacity, similarities and differences between ANH and other medical treatments, the role of proxies when patients lack decision-making capacity, and the equivalence of withholding and withdrawing treatment. Evidence for palliative or life-sustaining benefits for ANH are reviewed in three disease processes: amyotrophic lateral sclerosis (ALS), cancer, and dementias, including Alzheimer's disease. Although more recent studies suggest a possible palliative role for ANH in ALS and terminal cancer, feeding tubes do not appear to prolong survival or increase comfort in advanced dementia of the Alzheimer's type.

Objective: Our purpose was to determine the frequency of psychiatric morbidity and to assess the quality of life of women with advanced breast cancer.

Methods: The 227 women in the sample were recruited in Melbourne, Australia, and were interviewed (prior to intervention) for a randomized controlled trial of supportive-expressive group therapy. The main outcome measures were DSM–IV psychiatric diagnoses plus quality of life data based on the EORTC QLQ-C30 (core) and QLQ-BR23 (breast module) instruments.

Results: Forty-two percent of the women (97/227) had a psychiatric disorder; 35.7% (81) of these had depression or anxiety or both. Specific diagnoses were minor depression in 58 women (25.6%), major depression in 16 (7%), anxiety disorder in 14 (6.2%), and phobic disorder in 9 (4%). Seventeen (7.5%) women had more than one disorder. In terms of quality of life, one-third felt less attractive, one-quarter were dissatisfied with their body image, and, in most, sexual interest had waned. Menopausal symptoms such as hot flashes affected less than one-third, whereas symptoms of lymphedema were experienced by 26 (11.5%).

Significance: Women with advanced breast cancer have high rates of psychiatric and psychological disturbance. Quality of life is substantially affected. Clinicians need to be vigilant in monitoring psychological adjustment as part of a comprehensive biopsychosocial approach.

Objective: Employing a nationwide cross-sectional survey, we investigated the Japanese general population's attitudes toward disease and prognosis disclosure and related factors. Furthermore, we investigated Japanese medical practitioners' attitudes toward disease and prognosis disclosure for patients and decision making.

Methods: A nationwide anonymous questionnaire survey was conducted. A total of 5000 individuals were randomly sampled from the general population and 3104 physicians and 6059 nurses were randomly sampled in Japan.

Results: Finally, 2422 people from the general population (response rate, 48%), 1577 physicians (51%), and 3361 nurses (56%) returned questionnaires. Among the general population, 73% of participants answered that they “want to know” about their disease and prognosis when in an incurable disease state. Ninety percent desired direct disclosure and 8% disclosure through their family. However, few medical practitioners answered “patient himself” (physician 3%, nurses 4%) as the person whom they would primarily notify about the disease and prognosis when in charge of a patient with an incurable disease. On the other hand, physicians answered “family” most frequently (59%), whereas nurses most commonly responded, “depends on patient's condition” (63%).

Significance of research: Several detailed analyses of factors associated with prognosis disclosure were conducted. Japanese physicians need to carefully communicate with the patients individually about whether direct disclosure or disclosure primarily to the family is preferred.

Objective: Optimal clinical practice depends upon a precise language with common understanding of core terms. The aim of the present study was to examine how Norwegian physicians understand the commonly used but poorly defined term “terminal.”

Methods: A questionnaire was mailed to 1605 Norwegian physicians, representative of the Norwegian medical community. Nine hundred and sixty-eight responded and defined “terminal” in expected weeks left to live. The effects of gender, age, specialty, and experience with prognostication toward end of life on the estimation of “terminal” were investigated.

Results: Norwegian physicians on average expect a “terminal” patient to have 3.6 (± 3.5 SD) weeks to live with expectation ranging from 0 to 26 weeks. The majority (83.5%) defined “terminal” as less than 5 weeks' survival; 15.0% as 5 to 12 weeks' survival and 1.5% as more than 12 weeks' survival. No difference between genders was observed, whereas the youngest physicians (27–39 years) held shorter definitions than the other age groups. Physicians in internal medicine, surgery, and anaesthesiology held significantly shorter estimations of “terminal” than did physicians in general practice, public health, and psychiatry.

Significance of results: Our study shows that the majority of Norwegian physicians restrict “terminal” to the last 2–4 weeks of patients' lives. A life expectancy of a few days compared to several weeks should lead to different clinical actions. Efforts should therefore be made to come to a common definition of the term. In our opinion the use of “terminal” should be limited to when death is expected within a few days.

The article explores the individual patient's right to refuse, withdraw, or insist on medical treatment where there is conflict over these issues involving health care personnel or institutions, family members, legal requirements, or third parties concerned with public policy or religious/ideological/political interests. Issues of physician assistance in dying and medical futility are considered. The basis and the current legal status of these rights is examined, and it is concluded that threats to the autonomy of patients, to the privacy of the doctor/patient relationship, and to the quality of medical care should be taken seriously by individuals, medical practitioners, and others concerned with developing and maintaining reasonable, effective, and ethical health care policy.

Objective: Women with breast cancer suffer from considerable stress related to the diagnosis, surgery, and medical treatment. It is important to develop strategies to strengthen coping resources among these women. Research in art therapy has shown outcomes such as an increase in self-esteem and cohesion, significant improvement in global health, and a decrease in anxiety and depression. The aim of the present article was to describe the effects of an art therapy intervention program on coping resources in women with primary breast cancer.

Method: In this article, we report some of the results from a study including 41 women, aged 37–69 years old, with nonmetastatic primary breast cancer, referred to the Department of Oncology at Umeå University Hospital in Sweden for postoperative radiotherapy. The women represented various socioeconomic backgrounds. They were randomized to a study group (n = 20) with individual art therapy for 1 h/week during postoperative radiotherapy or to a control group (n = 21). The article focuses on changes in coping resources, as measured by the Coping Resources Inventory (CRI) before and 2 and 6 months after the start of radiotherapy. The study protocol was approved by the Umeå University Ethical Committee at the Medical Faculty (archive number 99–386).

Results: There was an overall increase in coping resources among women with breast cancer after taking part in the art therapy intervention. Significant differences were seen between the study and control groups in the social domain on the second and third occasions. Significant differences were also observed in the total score on the second occasion.

Significance of results: This study shows that individual art therapy provided by a trained art therapist in a clinical setting can give beneficial support to women with primary breast cancer undergoing radiotherapy, as it can improve their coping resources.

Objective: This study investigated the palliative options available when a patient requested euthanasia or physician-assisted suicide (EAS), the extent to which the options were applied, and changes in the patient's wishes.

Methods: In an observational study, 3614 general practitioners (GPs) filled in a questionnaire and described their most recent request for EAS (if any) (n = 1,681).

Results: Palliative options were still available in 25% of cases. In these cases options were applied in 63%; in 46% of these cases patients withdrew their request. Medication other than antibiotics, which was most frequently mentioned as a palliative option (67%), and applied most frequently (79%), together with radiotherapy, most frequently resulted in patients withdrawing their request.

Significance of results: GPs include the availability of palliative options in their decision making when considering EAS. The fact that not all options are applied or, if applied, the patient persists in the request is related to autonomy of the patient, the burden on the patient, and medical futility of the option.

Background and purpose: Although the relief of psycho-existential or spiritual suffering is one of the most important roles of palliative care clinicians, lack of an accepted conceptual framework leads to considerable confusion in research in this field. The primary aim of this article is to illustrate the process of developing a conceptual framework by the Japanese Task Force as the initial step of a nationwide project.

Methods: We used consensus-building methods with 26 panel members and 100 multidisciplinary peer reviewers. The panel consisted of six palliative care physicians, six psychiatrists, five nursing experts, four social workers or psychologists, two philosophers, a pastoral care worker, a sociologist, and an occupational therapist. Through 2 days of face-to-face discussion and follow-up discussion by e-mail, we reached a consensus.

Results: The group agreed to adopt a conceptual framework as the starting point of this study, by combining the empirical model from multicenter observations, a theoretical hypothesis, and good death studies in Japan. We defined “psycho-existential suffering” as “pain caused by extinction of the being and the meaning of the self.” We assumed that psycho-existential suffering is caused by the loss of essential components that compose the being and the meaning of human beings: loss of relationships (with others), loss of autonomy (independence, control over future, continuity of self), and loss of temporality (the future). Sense of meaning and peace of mind can be interpreted as an outcome of the psycho-existential state and thus the general end points of our interventions. This model extracted seven categories to be intensively studied in the future: relationship, control, continuity of self, burden to others, generativity, death anxiety, and hope.

Conclusions: A Japanese nationwide multidisciplinary group agreed on a conceptual framework to facilitate research in psycho-existential suffering in terminally ill cancer patients. This model will be revised according to continuing qualitative studies, surveys, and intervention trials.

Objective: To describe elderly-specific issues in end-of-life care.

Methods: Literature review and case examples.

Results: There is great heterogeneity in elderly patients' responses to end-of-life care.

Significance of results: Developmental and individual issues need to be considered in end-of-life discussions.

Objective: A meta-summary of the qualitative literature on spiritual perspectives of adults who are at the end of life was undertaken to summarily analyze the research to date and identify areas for future research on the relationship of spirituality with physical, functional, and psychosocial outcomes in the health care setting.

Methods: Included were all English language reports from 1966 to the present catalogued in PubMed, Medline, PsycInfo, and CINAHL, identifiable as qualitative investigations of the spiritual perspectives of adults at the end of life. The final sample includes 11 articles, collectively representing data from 217 adults.

Results: The preponderance of participants had a diagnosis of cancer; those with HIV/AIDS, cardiovascular disease, and ALS were also represented. Approximately half the studies were conducted in the United States; others were performed in Australia, Finland, Scotland, and Taiwan. Following a process of theme extraction and abstraction, thematic patterns emerged and effect sizes were calculated. A spectrum of spirituality at the end of life encompassing spiritual despair (alienation, loss of self, dissonance), spiritual work (forgiveness, self-exploration, search for balance), and spiritual well-being (connection, self-actualization, consonance) emerged.

Significance: The findings from this meta-summary confirm the fundamental importance of spirituality at the end of life and highlight the shifts in spiritual health that are possible when a terminally ill person is able to do the necessary spiritual work. Existing end-of-life frameworks neglect spiritual work and consequently may be deficient in guiding research. The area of spiritual work is fertile ground for further investigation, especially interventions aimed at improving spiritual health and general quality of life among the dying.

Purpose: Caring for patients with cancer can be taxing for front-line health care providers. The growing intensity of treatment protocols, in conjunction with staff shortages, reduced hospital stays, and broader pressures on the health care system may exacerbate these challenges, leading to increased risk for burnout. This article reviews the research literature regarding the prevalence of burnout and psychosocial distress among oncology providers, examines multifactorial occupational and personal determinants of risk, and considers intervention strategies to enhance resilience.

Methods: Literature review of empirical peer-reviewed studies focusing on prevalence and correlates of burnout among oncology physicians and nurses.

Results: Findings from a number of studies using validated measures and large samples suggest that prevalence rates for burnout and psychosocial distress are high among oncology staff, though not necessarily higher than in non-cancer-practice settings. A growing database has examined occupational (e.g., workload) and demographic (e.g., gender) factors that may contribute to risk, but there is less information about personal (e.g., coping) or organizational (e.g., staffing, physician–nurse relations) determinants or multilevel interactions among these factors. Oncologist burnout may adversely affect anticipated staff turnover. Other important endpoints (biological stress markers, health status, patient satisfaction, quality-of-care indices) have yet to be examined in the oncology setting. Intervention research is at a more rudimentary phase of development.

Conclusions: Burnout and distress affect a significant proportion of oncology staff. There is a need for additional conceptually based, longitudinal, multivariate studies regarding burnout and its associated risk factors and consequences.

Objective: Disabling breathlessness is the most common symptom of advanced cardiopulmonary disease. It is usually intractable, even when patients receive maximal medical therapy for their underlying condition. A pilot study was undertaken to evaluate a newly formed palliative Breathlessness Intervention Service (BIS).

Methods: The methodology followed the Medical Research Council's Framework for the Evaluation of Complex Interventions (Phase I). Qualitative interviews were completed with patients and relatives who had used the service and clinicians who had referred to it. The focus of the interviews was the participants' experience of using BIS.

Results: Patients valued the positive educational approach taken to breathlessness, emphasizing what was possible rather than what had been lost. Non-pharmacological strategies, especially the hand-held fan and exercises, were rated very helpful and new to patients. Participants reiterated that breathlessness was frightening and isolating, exacerbating the disability it caused: the easy access to advice and flexibility of BIS helped to alleviate this. Participants wanted a written record of the advice given. Carers welcomed the focus on their needs. Clinicians valued sharing the management of patients with an intractable problem.

Significance of results: This Phase I study has helped to remodel the service rapidly by uncovering the aspects of BIS that users find most valuable and areas that need change or improvement. The BIS needs to provide written information, to reinforce and extend contacts with other agencies to build on support it already provides for patients and carers, and extend its flexibility and accessibility. Providing a “drop-in” service and continuing education after the initial program of contacts is completed could be a useful service development, warranting further evaluation. A qualitative methodology involving service users and referrers can help to shape service development rapidly.

Objective: Patients at the end of their life typically endure physical, emotional, interpersonal, and spiritual challenges. Although physicians assume a clearly defined role in approaching the physical aspects of terminal illness, the responsibility for helping their patients' spiritual adaptation is also important.

Methods: This article (1) describes the terms and definitions that have clinical utility in assessing the spiritual needs of dying patients, (2) reviews the justifications that support physicians assuming an active role in addressing the spiritual needs of their patients, and (3) reviews clinical tools that provide physicians with a structured approach to the assessment and treatment of spiritual distress.

Results: This review suggests that physicians can and should be equipped to play a key role in relieving suffering at the end of life.

Significance of results: Physicians can help their patients achieve a sense of completed purpose and peace.

Background: Hemodialysis is a palliative treatment for patients with established renal failure (ERF), and volume overload is a common problem for hemodialysis patients with low urinary output. Volume overload is thought to be mostly attributable to interdialytic fluid intake by the patient and is associated with an increased symptom burden and the development of serious medical complications. Repeated episodes of volume overload may adversely affect staff–patient relationships and the perception of care in this patient population. The aim of this case series study was to evaluate the effect and experience of a psychological intervention on interdialytic weight gain in a small group of patients.

Methods: Five patients were treated. The intervention involved using techniques derived from both cognitive behavior therapy and motivational interviewing. The main outcome measures were interdialytic weight gain and patient perception of the intervention.

Results: Three of the five patients reduced both mean interdialytic weight gain and the frequency with which they gained in excess of 3% of their dry weight during the intervention phase. The intervention was found to be acceptable to patients.

Significance of results: The intervention was effective in helping three of the five patients to reduce both the frequency and the severity of volume overload, and two of these patients maintained this for at least 6 months post intervention. The intervention used actively engaged the patients and appeared to be experienced positively. The methods used to mobilize patient resources and optimize staff–patient relationships as vehicles of change are discussed. Both may have implications for treatment concordance and the perception of care delivered.

The precise circumstances of Theresa Schiavo's disability, the reasons advanced for preserving and ending her life and the covert personal agendas and unacknowledged political-economic forces that may have significantly affected the outcome were investigated and are presented.

Objective: Little attention has been paid in research to the palliative care of those dying with dementia. This literature review summarizes current research in the social sciences, including medical sociology on palliative care in the example of dementia.

Methods: A designated set of search words was applied to a comprehensive set of university-based search engines to ensure that relevant social science research since 200 was included.

Results: Primary themes discussed in the article include person-centered care, grief, agitation, aggression, pain management, care provision, training and education, decision-making, primary settings of care, and spirituality and dignity. Other key gaps in the literature are discussed.

Significance of the results: Given the projected increase within the next 20 years of people dying with dementia (Hanrahan et al., 2001), palliative care for those dying with dementia will become more relevant than ever.

In this article, I attempt to untangle some of the cultural, philosophical, and ethical currents that informed the Schiavo case. My objective is to better apprehend what the Schiavo case means for end-of-life care in general and to assert that our discourse about the ethical issues attendant to brain injury will be impoverished if we limit our discussions about disorders of consciousness solely to the vegetative state. If we ignore emerging developments in neuroscience that are helping to elucidate the nature of these disorders and fail to broaden the conversation about brain injury, beyond the unmitigated futility of the permanent vegetative state, we will imperil others who might improve and be helped. Through such efforts we can help mitigate the tragedy of the Schiavo case and overcome the rhetoric that marked the national discourse in March 2005. Once the complexity of disorders of consciousness is appreciated, rhetorical statements about a right to die or a right to life are exposed as being incompatible with the challenge of providing care to such patients. This is especially true as neuroscience brings greater diagnostic refinement to their assessment and management, a topic addressed in this article, which specifically focuses on the clinical and ethical implications of the recently described minimally conscious state. Instead of staking out ideological positions that do not meet the needs of patients or families, we should strive to both preserve the right to die for those who are beyond hope while affirming the right to care to those who might benefit from coming advances in neuroscience. If we can achieve that delicate balance, we will be able to transcend the partisan debate that shrouded the life and death of Theresa Marie Schiavo and begin to articulate a palliative neuroethics of care for those touched by severe brain injury and disorders of consciousness.

Delirium is a common syndrome complicating terminal illness. It is underrecognized partly because it is a difficult clinical concept. Consciousness, awareness, alertness, arousal, awakeness, vigilance, and attention are some of the terms used to describe the deficits occurring in delirium. Though interconnected, they are often loosely defined. Alertness is the primary impairment, and attentional deficits are objective clinical indices of the cognitive impairments of delirium. Simple bedside assessments of delirium are considered. The “deliriant” threshold and the symptomatic fluctuations of delirium are important concepts in the understanding of delirium. Jackson's conceptualization of the nervous system is relevant to delirium. Raising the deliriant threshold by multicomponent interventions is the intent of the palliative management of terminal delirium.

Prognosis.

Objective: We report here a terminally ill patient with stomach cancer who developed a brief psychotic disorder mimicking cerebrovascular attack after a short episode of nasal bleeding. Close examination of the patient revealed that nasal bleeding was an event that symbolized deterioration of the general condition leading to death for the patient.

Methods: A 77-year-old male, who was diagnosed as having stomach cancer and was receiving palliative care, presented with tremor and insomnia just after a short episode of nasal bleeding and showed reduced response to stimuli mimicking cerebrovascular attack. Laboratory data were unremarkable. The next day, catatonic behavior developed. He had no history of psychiatric illness or drug or alcohol abuse. After receiving haloperidol, psychiatric symptoms disappeared and he returned to the previous level of functioning within 3 days. The patient explained that he had seen a patient whose general condition deteriorated after nasal bleeding and regarded nasal bleeding as a symptom of deteriorating general condition leading to death and thereafter became afraid of the nasal bleeding.

Results and Significance of results: Although, nasal bleeding is common and usually not severe in medical settings, for the patient, it was an event that symbolized deterioration of the general condition leading to death. Brief psychotic disorder in cancer patients is rare in the literature, although patients receiving terminal care share various kinds of psychological burden. Medical staff in the palliative care unit should be aware of the psychological distress experienced by each patient and consider brief psychotic disorder as part of the differential diagnosis when patients show unexplained neurological-like and/or psychiatric symptoms.