Palliative Care In Non-malignant Disease Research Articles

Responding to Urgency of Need in Palliative Care: Initial Stage of Development of a Decision Aid for Palliative Care Triage (S783)

•Comprehend the factors that indicate urgency of palliative care needs.•Articulate the challenges and barriers associated with the triage process in palliative care. Demand for inpatient and community-based palliative care (PC) is growing. This trend is due to an aging population, earlier integration of PC in cancer care, increasing involvement of PC in non-malignant disease, and increasing community awareness of palliative care. Thus a diverse patient population referred from a variety of sources must be triaged for allocation of limited clinical resources. The aim of this study was to explore the experience of health professionals when triaging PC needs as an initial step in developing a decision aid that can facilitate the equitable, efficient and transparent allocation of PC services by urgency of need. Twenty purposive-sampled general and specialist PC health professionals (medical n=9, nursing n=9, allied health n=2) from metropolitan and regional locations across Victoria, Australia participated in focus groups or individual interviews. A semi-structured interview guide sought to explore perspectives on indicators of urgency and facilitators and barriers to implementation. Transcripts were subjected to deductive thematic analysis by two researchers. Health professionals shared commonality in the factors they found useful to determine urgency, such as current or impending mismatch between care needs and care environment. Performance status was reported to be less important when considered in isolation. Interpersonal and ethical challenges associated with the triage process and systemic barriers for implementing a decision aid were highlighted. Indicators of urgent PC needs are complex, dynamic and often inter-related, but are useful for PC health professionals undertaking the difficult task of triage. The results of this study will form the basis of a future discrete choice experiment to determine the relative importance of each triage factor.

Cardiorespiratory Nurses’ Perceptions of Palliative Care in Nonmalignant Disease: Data for the Development of Clinical Practice

Nurses lack a comprehensive body of scientific knowledge to guide the palliative care of patients with nonmalignant conditions. Current knowledge and practice reveal that nurses in many instances are not well prepared to deal with death and dying. Focus groups were used in an exploratory study to examine the perceptions of palliative care among cardiorespiratory nurses (n = 35). Content analysis was used to reveal themes in the data. Four major themes were found: (1) searching for structure and meaning in the dying experience of patients with chronic disease, (2) lack of a treatment plan and a lack of planning and negotiation, (3) discomfort in dealing with death and dying, and (4) lack of awareness of palliative care philosophies and resources. The information derived from this sample of cardiorespiratory nurses represents a complex interplay between personal, professional, and organizational perspectives on the role of palliative care in cardiorespiratory disease. The results of the study suggest a need for nurses to be equipped on both an intellectual and a practical level about the concept of palliative care in nonmalignant disease.

Palliative care in non-malignant disease: a pragmatic response.

With increasing requests for palliative care provision for all patients regardless of diagnosis, professionals within specialist palliative care services and palliative care nurse specialists need to consider how they will respond. Current palliative care is considered inequitable as the majority of palliative care services do not include those with non-malignant disease. This article examines a number of issues concerning the extension of palliative care to this patient population. It considers the needs of non-cancer patients, palliative care responsibilities, resource implications, professional knowledge and responsibilities, and possible action. Recommendations include the need for further research to explore these patients' needs and the role of specialist palliative care services. Suggestions regarding how Macmillan nurses could respond to the increased demand for palliative care services are offered. Within the current financial climate, the only realistic response for the Macmillan nurse is to act as a consultant working in collaboration with other health professionals outside the palliative care specialty.

Patients with non-malignant disease deserve an equitable service.

Palliative care has often challenged the status quo. With the wider health agenda focused on technology, cure and waiting lists, palliative care has strongly supported and valued quality care of the dying, the patients agenda and multidisciplinary working. Yet when faced with the new frontier of palliative care in non-malignant disease, the palliative care movement seems cautious, perhaps even daunted.

Specialist palliative care in nonmalignant disease.

The objective of this study was to investigate how many patients who die from causes other than cancer might benefit from specialist palliative care. This was achieved by secondary analysis of data from the Regional Study of Care for the Dying, a retrospective national population-based interview survey. The investigation involved 20 self-selected English health districts, nationally representative in terms of social deprivation and most aspects of health services provision. A total of 3696 patients were randomly selected from death registrations in the last quarter of 1990; an interview concerning the patient was completed 10 months after the death by bereaved family, friends or officials. The results show that a third (243/720) of cancer patients who were admitted to hospices or had domiciliary palliative care scored at or above the median on three measures of reported symptom experience in the last year of life. That is the number of symptoms (eight or more), the number of distressing symptoms (three or more) and the number of symptoms lasting more than six months (three or more). A total of 269 out of 1605 noncancer patients (16.8%) fulfilled these criteria. On this basis, it is estimated that 71,744 people who die from nonmalignant disease in England and Wales each year may require specialist palliative care. An increase of at least 79% in caseload would, therefore, be expected if specialist palliative care services were made fully available to noncancer patients. This is a conservative estimate, as non-cancer patients were matched to only one-third of cancer patients who had specialist palliative care. It is concluded that clinicians and patient groups caring for patients with advanced nonmalignant disease must work together with specialist palliative care services and with health commissioners to develop, fund and evaluate appropriate, cost-effective services which meet patient and family needs for symptom control and psychosocial support.