Paediatric palliative care delivered by an adult palliative care service

BACKGROUND: In recent years, the discipline of paediatric palliative care has emerged in response to the awareness of the distinct needs of dying children. To date, in Ireland there is no paediatrician trained in palliative medicine, and specialist paediatric palliative care is generally delivered by adult trained teams. AIMS: We wished to examine the experience of an adult palliative care service providing palliative care to children. Methods: The study entailed three stages: (1) a retrospective chart review of all children referred to the service; (2) a questionnaire survey; and (3) a focus group to explore the views of staff in caring for children. RESULTS: The main themes highlighted were staff competence, staff stress, uncertainty of prognosis, resource implications and co-operation with other teams. CONCLUSION: This study highlights some of the challenges for an adult palliative care team providing paediatric palliative care. Many skills developed for adult patients can be used in paediatric palliative care. Adult palliative care teams and paediatric teams have complementary skills. The challenge is to integrate services to meet the needs of terminally ill children.     

Ketamine for pain: an update of uses in palliative care

Ketamine is a lipophilic, general anesthetic. When given at subanesthetic doses, it also has been found to be an effective analgesic, with efficacy in cancer-associated neuropathic pain, ischemic pain, and regional pain syndromes. It can be administered orally, intravenously, subcutaneously, and topically, and interacts with several receptors important in pain management, most importantly the N-methyl-D aspartate (NMDA) receptor. Blockade of the NMDA receptor is associated with reversal of opioid tolerance. Ketamine is metabolized via cytochrome P450 3A4, although no significant interactions have been reported. Ketamine is considered one of the World Health Organization (WHO) essential drugs for the management of refractory pain.     

Professional competence and palliative care: an ethical perspective

The aim of this article is to explore an ethical view of professional competence by examining the professional competence of physicians in the context of palliative care. A discussion of the four dimensions of professional competence--knowledge, technical skills, relationships, and affective and moral attitude--leads us to the conclusion that "habits of mind" are important in every aspect of professional competence. This observation is then considered in the context of virtue ethics and ethics of care. Virtue ethics focuses on personal qualities and moral attitudes, while the ethics of care concentrates on the way these qualities are lived out in specific care relationships. Our conclusion points up the importance of education in ethics in the development of professional competence, and argues that because palliative care involves intense human interactions, integrating palliative care into the medical curriculum may improve the ethical culture of health care as a whole.     

Development of palliative care in India: an overview

India is a land of ancient civilizations with cities and villages, cultivated fields and works of art dating back 4,000 years. Currently, it is sharing the position of the second largest population in the world. Two-thirds of the population live in rural areas and only one-third live in urban areas. Because of these disparities in the population locations, the health-care system faces significant problems of adequate provision in rural areas. A lack of resources, illiteracy, poverty, lack of awareness about the types of available health care make developing palliative-care services a major challenge in India.     

Exploring cancer genetics and care of the family: an evolving challenge for palliative care

There is a growing scientific understanding and increasing public awareness of the influence of genetics on the development of cancer. This article, which is based on a review of the literature, focuses on how the awareness of genetic predisposition to cancer is affecting patients and their families. It highlights the way that risk assessment for predisposition to cancer can conflict with traditional models of informed consent and can cause concern for families. It suggests that there is need for informed discussion within palliative care about how best to support families with concerns about a family history of cancer.     

Pain assessment tools in palliative care: an urgent need for consensus

At present, there is no universally accepted cancer pain assessment tool for use in palliative care (PC). The European Palliative Care Research Collaborative (EPCRC), therefore, aims to develop an international consensus-based computerised pain assessment tool. As part of this process, we have performed (1) a literature review on pain assessment tools for use in the PC and (2) an international expert survey to gain information on the relevant dimensions for pain assessment in PC. 230 publications were identified, only six met the inclusion criteria. Three further articles were identified through manual searching, totalling 11 different pain assessment tools. Nine tools were multidimensional. Pain intensity was assessed in seven, using various numerical/verbal rating scales (NRS/VRS); five tools focused on pain management. Three publications did not identify the rationale for the need to develop a new tool, and the selection procedure for items/dimensions was not described in six tools. Patient and/or professional expert groups were involved in the development of five tools and only two tools were extensively validated or cross-culturally tested. Thirty-two experts (71%) completed the expert survey and identified 'intensity', 'temporal pattern', 'relief/exacerbation', 'pain quality' and 'location' as the five most relevant dimensions. Most preferred assessment of 'pain intensity' was by NRS rather than VRS. Time windows extending 24 h were regarded as less relevant. Development of PC pain assessment tools seems to be a continuous process, which does not adhere to systematic guidelines, thus does not contribute to a universally accepted tool. No tool contained all relevant dimensions as defined by the experts. Many tools focused on particular dimensions, suggesting that specific research interests may drive the tool development process. Extensive literature reviews, expert and patient input and clinical studies are a needed approach in the development of a new consensus-based pain assessment tool.     

The palliative care quiz for nursing (PCQN): the development of an instrument to measure nurses' knowledge of palliative care

This paper descrihes the process and outcomes of a study to develop a tool to measure nurses' knowledge of palhative care The development of the palhative care quiz for nursing (PCQN) entailed the convening of an advisory committee, a wide process of consultation, the development of a conceptual firamework, determination of format, generating of items and pre-testing, piloting and further testing of the quiz The PCQN is a 20-item true, false and 'I don't know' test of knowledge that is easily administered and has utility for assessing knowledge, stimulating discussion and identifying misconceptions ahout palliative care nursing     

Residential aged care: the last frontier for palliative care

AIM: This paper is a report of an explorative study describing the perceptions and beliefs about palliative care among nurses and care assistants working in residential aged care facilities in Australia. BACKGROUND: Internationally, the number of people dying in residential aged care facilities is growing. In Australia, aged care providers are being encouraged and supported by a positive policy platform to deliver a palliative approach to care, which has generated significant interest from clinicians, academics and researchers. However, a little is known about the ability and capacity of residential aged care services to adopt and provide a palliative approach to care. METHODS: Focus groups were used to investigate the collective perceptions and beliefs about palliative care in a convenience sample of nurses and care assistants working in residential aged care facilities in Australia. Thematic content analysis was used to analyse the data, which were collected during 2004. RESULTS: Four major themes emerged: (1) being like family; (2) advocacy as a key role; (3) challenges in communicating with other healthcare providers; (4) battling and striving to succeed against the odds. Although participants described involvement and commitment to quality palliative care, they also expressed a need for additional education and support about symptom control, language and access to specialist services and resources. CONCLUSION: The residential aged care sector is in need of support for providing palliative care, yet there are significant professional and system barriers to care delivery. The provision of enhanced palliative care educational and networking opportunities for nurses and care assistants in residential aged care, augmented by a supportive organizational culture, would assist in the adoption of a palliative approach to service delivery and requires systematic investigation.     

Pediatric palliative care: a family-centered model for critical care

Melanie's case and the associated concerns are not unique. Children with life-threatening conditions and their families and communities may benefit from a family-centered model of pediatric palliative care. Benefits from its implementation are not just at the end of life, but throughout the course of therapy. Compassion coupled with a holistic approach incorporating humane and family-centered care is essential in meeting physical, mental, and spiritual needs. An interdisciplinary and collaborative model of pediatric palliative care involves the work of many, including nurses, physicians, social workers, chaplains, child life specialists, pharmacists, ethicists, bereavement counselors, ancillary staff, volunteers, and families themselves. They must incorporate key elements of the model, including clinical services, education and training, support services, and research that address physical, mental, and spiritual needs of families, children, and communities faced with life-threatening conditions.     

The initiative for pediatric palliative care: an interdisciplinary educational approach for healthcare professionals

There is growing empirical evidence that the U.S. healthcare system fails to meet the needs of children with life-threatening conditions and their families. The confluence of several recent developments has created a critical window of opportunity for improving clinical practice and institutional effectiveness in pediatric palliative care. This article presents an innovative, comprehensive approach to pediatric palliative care education that was developed by the Initiative for Pediatric Palliative Care, a consortium of seven academic children's hospitals, Education Development Center, the National Association of Children's Hospitals and Related Institutions, the New York Academy of Medicine, the Society of Pediatric Nursing, and the Association of Medical School Pediatric Department Chairs. The approach is based on needs assessment research with clinicians and parents and reflects a commitment to culturally respectful, family-centered care of children with life-threatening conditions. The pedagogy combines principles of adult education, includes families as teachers, and integrates affective and cognitive dimensions to enhance learning.     

Terminal restlessness: perspectives of an interdisciplinary palliative care team

AIM: To explore an interdisciplinary team's perceptions of families' needs and experiences surrounding terminal restlessness. DESIGN: A qualitative exploratory design using two focus groups. SAMPLE: Participants were members of an interdisciplinary palliative care team working in a palliative care unit in a university teaching hospital in Israel. RESULTS: The palliative care team confronted several challenging and stressful issues surrounding the management of terminal restlessness that influenced their treatment decisions and relationships with families. Four themes reflected the participants' perceptions and experiences: suffering, maintaining control, feelings of ambivalence and valuing communication to reduce conflict. CONCLUSION: Findings suggest the need for comprehensive treatment plans to meet the special supportive and information needs of these families, specific supportive strategies for the professional caregivers and further studies to develop ethical criteria and evidence-based guidelines for the use of sedation in the management of terminal restlessness.     

Implementing audit in palliative care: an action research approach

AIM: To investigate the factors that influence the successful implementation of audit in a palliative care setting. BACKGROUND: Quality assurance is a necessary component of contemporary health care. In the past, palliative care has not generally been subject to systems of audit and quality management. However in recent years the need for all health care organizations to have clear policies and procedures for maintaining quality has become more pressing. METHOD: An action research project was conducted to investigate the implementation of audit in a palliative care setting, which involved the application and modification of the Support Team Assessment Scale (STAS). FINDINGS: A collaborative approach was adopted and this facilitated the identification of factors vital to successful introduction of the audit methodology into the unit. These included effective teamwork, the input of an external facilitator, good relationships with management and prompt and relevant feedback on progress. The use of STAS was fully integrated into the work of the unit and a robust programme of audit has been established. CONCLUSIONS: Combining the cyclical nature of action research methodology and the audit process with Lewin's change theory provided a clear conceptual framework for the research. This approach would be applicable in a range of health care settings to bring about improvements in quality management.