The preferred priorities for care document in motor neurone disease: views of bereaved relatives and carers.

Increasing emphasis is being placed on the need for advanced care planning (ACP) at the end of life. The Preferred Priorities for Care (PPC) document is a patient-held record promoted by the End of Life Care Strategy as an ACP tool to promote discussion and communication amongst patients, family and health care providers. However, little research exists into evaluating its effectiveness or exploring patient and carer views, particularly in non-malignant disease. Because the majority of patients with Motor Neurone Disease (MND) lose verbal communication, early discussion of patients' wishes and preferences, a central aspect of ACP, is vital. This study examined MND patients' bereaved relatives' experiences of using the PPC document and their perceptions about its impact on end-of-life care using qualitative methods. Key findings adding to existing literature were that the PPC document was felt to have little impact on end-of-life care amongst this patient group and that there was a perceived lack of awareness of the document amongst health care professionals (HCPs), in particular hospital staff. This was felt to limit the effectiveness of the document. This has obvious implications for practice, looking at awareness amongst HCPs and ways to improve this situation, particularly in light of the current pressures to meet patient preferences at the end of life.

Communication with families facing life-threatening illness: a research-based model for family conferences.

BACKGROUND: Communication is an ongoing challenge for clinicians working with people facing life-threatening illnesses and end of life. Family conferences offer patient-focused, family-oriented care that brings together patients, family members, and health care providers. OBJECTIVE: The aim of this study was to develop a research-based model for family conferences to help physicians and other health care providers conduct such conferences effectively and improve communication with patients and families. DESIGN: We prospectively studied family conferences for patients facing life-threatening illness in two inpatient medical centers. We videotape and audiotape recorded real-life conferences and postconference interviews with participants. PARTICIPANTS: Twenty-four family conferences were included in the study. Participants consisted of 24 patients, 10 of whom took part in the family conferences, 49 family members, and 85 health care providers. APPROACH: A multidisciplinary team conducted a qualitative analysis of the videotaped and audiotaped materials using thematic analysis. The team used a multistage approach to independently and collectively analyze and integrate three data sources. MAIN RESULTS: The resulting theoretical model for family conferences has 4 main components. These include the underlying structural context of conference organization and the key process components of negotiation and personal stance. Emotional engagement by health care providers, emotion work, appears central to the impact of these components on the successful outcome of the conference. In addition to the theoretical model, the authors found that family conference participants place specific value on the "simultaneous presence" of conference attendees that leads to being on the "same page." CONCLUSIONS: Physicians and other health care professionals can use the model as a guide for conducting family conferences and strengthening communication with patients, families and colleagues.

Prospective integration of cultural consideration in biomedical research for patients with advanced cancer: recommendations from an international conference on malignant bowel obstruction in palliative care.

In the setting of an international conference on malignant bowel obstruction as a model for randomized controlled trials (RCTs) in palliative care, we discuss the importance of incorporating prospective cultural considerations into research design. The approach commonly used in biomedical research has traditionally valued the RCT as the ultimate "way of knowing" about how to best treat a medical condition. The foremost limitation of this approach is the lack of recognition of the impact of cultural viewpoints on research outcomes. We propose that interest relevant to cultural viewpoints should be emphasized in conceptualizing and interpreting research questions, designs, and results. In addition to recognizing our cultural biases as individuals and researchers, we recommend two major shifts in designing and implementing RCTs: 1) inclusion of a multidisciplinary team of researchers to inform the diversity of perspectives and expertise brought to the research, and 2) use of mixed methods of inquiry, reflecting both deductive and inductive modes of inference.

Unrestricted opiate administration for pain and suffering at the end of life: knowledge and attitudes as barriers to care.

BACKGROUND: Pain and symptom management is critical for quality end-of-life care in the hospital. Although guidelines support the use of unrestricted opiate administration to treat refractory pain and suffering in the dying patient, many patients die suffering with symptoms that could have been addressed. METHODS: A multidisciplinary convenience sample of 381 hospital-based health care providers completed a survey evaluating their understanding of the principles of treating refractory pain and suffering at the end of life in the hospital, knowledge of the institution's policy about how to implement such care, and attitudes about and comfort with such treatment. RESULTS: Respondents recognized pain and symptom management as a goal of unrestricted opiate use at the end of life, but 12% identified comfort for families or treatment of nonphysical suffering as the principal goal of this modality. Two thirds of respondents felt that unrestricted opiates were used too rarely and 45% felt they were used too late. However, 16% felt uncomfortable administering unrestricted opiates and 21% of physicians and nurses who had used restricted opiates reported having felt pressured to increase dosing of opiates. Knowledge deficits concerning appropriate candidates for unrestricted opiates and the protocol for appropriate implementation were common. CONCLUSIONS: Knowledge deficits and attitudinal concerns may hamper the administration of unrestricted opiates for refractory pain and suffering at the end of life in the hospital. Clinician education and clarification of the appropriate use of this modality when there are differences in clinician and family perception of discomfort are needed.

Preparing professionals for family conferences in palliative care: evaluation results of an interdisciplinary approach.

BACKGROUND: Patients, families, and health care professionals recognize the need for better communication in palliative and end-of-life care. Family conferences are a powerful clinical tool for communicating with patients and family members. Although family conferences are often used in medical care, few clinicians are prepared to conduct them effectively. An innovative palliative care educational model that included specific attention to family conferences was developed and evaluated. To intervene early in the process of professional socialization, the interactive and interdisciplinary training included medical and social work students. METHOD: A quasi-experimental longitudinal design was employed to evaluate the educational intervention. Survey measures were administered before, immediately after, and three months after training. Questions addressed experience, education, and attitudes about family conferences. A standardized scale was used to measure change in students' confidence in their ability to lead family conferences. RESULTS: For both professions, the intervention group demonstrated a significant increase in confidence in the ability to lead family conferences compared with the control group. Three-month follow-up data suggested that subjects in the intervention group maintained these gains. CONCLUSION: This pilot intervention showed that an interdisciplinary educational approach improves confidence in the ability to lead family conferences when students are exposed early in the process of professional socialization. Early intervention increases the propensity and skills needed to conduct family conferences and advances communication in palliative care. Future research on interdisciplinary education should evaluate effects on clinical practice behaviors, satisfaction with communication and collaboration, and patients' and families' perceptions of quality of care.

Interdisciplinary education: evaluation of a palliative care training intervention for pre-professionals.

PURPOSE: Medical education inadequately prepares students for interdisciplinary collaboration, an essential component of palliative care and numerous other areas of clinical practice. This study developed and evaluated an innovative interdisciplinary educational program in palliative care designed to promote interdisciplinary exchange and understanding. METHOD: The study used a quasi-experimental longitudinal design. Thirty-three medical students (third and fourth year) and 38 social work students (second year of masters degree) were recruited. The intervention group students (21 medical and 24 social work students) participated in a series of four training sessions over four weeks while the control group students received written materials after the study. The curriculum and teaching methods were based on theories of professional socialization and experiential learning. The intervention included experiential methods to promote interdisciplinary interaction to foster communication, exchange of perspectives, and the building of mutual trust and respect. Both groups completed assessments of perceived role understanding, a primary component of effective interdisciplinary teamwork, in palliative care. Self-administered surveys were completed at baseline, intervention completion, and three months later. The intervention group also completed an anonymous evaluation about the interdisciplinary education. RESULTS: The intervention group demonstrated a significant increase in perceived role understanding compared with the control group. Three-month follow-up data suggested that intervention group subjects maintained gains in perceived role understanding. CONCLUSION: An interdisciplinary educational intervention improves role understanding early in the process of professional socialization in a pilot program. Further implementation of interdisciplinary education should evaluate the effect on subsequent interdisciplinary practice and the quality of patient care.