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).

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.

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: 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: 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: A key aspect of the role of clinicians caring for patients in the setting of advanced illness focuses on attending to the needs of informal caregivers during the end-of-life period. The purpose of this study was twofold: (1) to complement and enrich existing quantitative findings regarding caregiver burden near the end of life, and (2) to identify potential solutions to caregivers' unmet needs in an effort to assist clinicians in the development of clinical interventions.

Methods: This qualitative study, using focus groups and content analysis of transcripts, was conducted in a comprehensive cancer center in Washington, DC. Seven focus groups were held: three with recently bereaved caregivers and four with active caregivers of patients with metastatic cancer and an expected survival of 6 to 12 months.

Results: Data were stratified into two broad categories: (1) general problems and (2) behaviors/activities that were helpful/would have been helpful in alleviating these problems. Within each of these two categories, five subcategories emerged: medical care (including provision of information, coordination of care, bedside manner, satisfaction with care), quality of life (including well-being, role adjustments), help from others (including practical assistance, social support), positives of caregiving, and unsolicited themes (including job flexibility, impact of the disease on the family, informational needs, relationship with patient).

Significance of results: Results suggest caregivers may benefit from more information about patient prognosis and hospice, attention to quality-of-life issues, and enhanced, direct communication with clinicians. Although information of this nature is likely to be known to palliative care clinicians, the specific details and verbal insights provided by caregivers give an important voice to existing quantitative data and may provide more detailed information to assist palliative care clinicians seeking to develop interventions to meet caregiver needs during the period near the end of life.

Objective: Palliative care is a philosophy of care for individuals experiencing progressive, incurable disease. It encompasses two dynamics, science-based practice and relationship between patient, family, and health professional. Each dynamic is essential for quality palliative care, yet the requisites for each are different.

Methods: The scientific process of observation and measurement requires differentiation, distance, and detachment to fulfill its demands for objectivity, whereas relationship, unobservable and immeasurable, requires sameness, closeness, and connection of a shared humanity. It is science, however, the prevailing world-view, that shapes our thinking and consequently, influences the education and practice of health professionals.

Results: We explore the dynamics of science and relationship and the incongruities between them. We examine the prominence of science in palliative care and its impact on relationship.

Significance of results: We contend that questioning the current emphasis of science in palliative care and discovering the joy and rewards of shared human experience will enrich the quality of life for patients, families, and health professionals.

Objective: Complementary and Alternative Medicine (CAM) is becoming increasingly popular among cancer patients, in particular those with breast cancer. It represents one of the fastest growing treatment modalities in the United States. Therefore, knowledge of CAM therapies is becoming necessary for physicians and other health care providers. CAM encompasses a wide range of modalities including special diet and nutrition, mind–body approaches, and traditional Chinese medicine.

Methods: We reviewed the biomedical literature on CAM use in breast cancer patients, using Medline search from 1975 until 2002. In addition, consensus reports and books on CAM and breast cancer were included in the review. We evaluated the prevalence of CAM use in breast cancer patients, the reasons cited for its use, the different available modalities, and the reported outcomes.

Results: Use of CAM in breast cancer patients ranges between 48% and 70% in the United States. The most commonly used CAM modalities include dietary supplements, mind–body approaches, and acupuncture. The reasons cited for using CAM were to boost the immune system, improve the quality of life, prevent recurrence of cancer, provide control over life, and treat breast cancer and the side effects of treatment. Several studies reported favorable results including improved survival, better pain control, reduced anxiety, improvement in coping strategies and significant efficacy in treating nausea and vomiting. Other less well-organized trials have reported either no benefit or negative effect of CAM and potential toxicity of some commercial products.

Significance of results: CAM is a growing field in health care and particularly among breast cancer patients. Knowledge of CAM by physicians, especially oncologists, is necessary. Oncologists should be willing to discuss the role of CAM with their patients and encourage patients to participate in well-organized research about CAM.

Objective: To report on the case of a terminally ill patient who expresses suicidal ideation.

Methods: As this case demonstrates, suicidality at end-of-life poses numerous challenges for the palliative care team. In this case, a 49-year-old man with locally extensive head and neck cancer refused all life-prolonging treatment and expressed a desire to hasten his own death. Other issues, such as chemical dependency and lack of social supports, complicated his care.

Results: Suicidality lessened as continuity of care, with ongoing assessments and interventions, addressed sources of suffering and built relationships with health care professionals.

Significance of results: This case highlights the observation that desire for hastened death fluctuates for patients at end-of-life and may be influenced by factors under the control of the palliative care team.

Each year, hundreds of thousands of Americans die following withholding or withdrawal of life-support treatments. This dramatic change in the practice of medicine has quietly taken place and been accompanied by minimal publicity or discussion.

This manuscript was written for and delivered as the keynote address at the Southern California Cancer Pain Initiative's 2002 Annual Awards Dinner. The author thought the journal's readership might experience the content as more immediate if it remained in its original narrative form.

Clinical Update: Literature Abstracts

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