Pediatric palliative care instruction for residents: an introduction to IPPC

A 1-day training event for pediatric residents with interdisciplinary staff was held, which was modeled after the Initiative for Pediatric Palliative Care (IPPC). Training included relational communication, cultural humility, pain-symptom management, family-centered care, team problem solving, and strategic planning using didactic, small group, and plenary platforms. Two bereaved parents were co-learners and trainers. Twenty-six interdisciplinary staff participated. A positive impact was measured in new knowledge gained, value in collaborative learning with health care professionals and families, and ability to work with professionals outside participants' own unit. Confidence to advocate for improved pediatric palliative care was also noted. The IPPC curriculum is easily adapted for resident education. Incorporating family members as co-learners and teachers is valuable. Advocacy for pediatric palliative care may follow this type of experience.     

Developing targets for public health initiatives to improve palliative care

Background  

Palliative Care is an approach that improves quality of life for patients and their families facing the problems associated with incurable life-threatening illness. In many countries, due to the rapidly ageing population, increasingly more people are suffering from serious chronic disease towards the end of life, making further development in palliative care a major public health challenge. The aim of this study was to develop the first targets for public health initiatives to improve palliative care in Germany.     

A clinician's view on palliative care, terminal care and quality of life.

No more than 20-25% of cancer patients are cured and 55% need palliative treatment from the time of diagnosis. Medical and nurse training in palliative care, and pain control in particular, is poor and there is a great shortage of doctors trained in terminal care. Palliative care is detailed, complex care and includes many services both in the hospital and in the community. It should be available to all patients wherever they live. We need a network of Home Care and Hospital Support Teams throughout the country, and a limited number of specialist hospice inpatient units to deal with the difficult problems, research and training in terminal care. These services need to be co-ordinated and monitored and will require funding by governmental bodies.     

Progress in palliative care in Israel: comparative mapping and next steps

ABSTRACT: Palliative care was established rapidly in some countries, while in other countries its establishment has taken a different trajectory. This paper identifies core steps in developing a medical specialty and examines those taken by Israel as compared with the US and England for palliative care. It considers the next steps Israel may take.Palliative care aims to provide quality of life for those with serious illnesses by attending to the illness-prompted physical, mental, social, and spiritual needs of patients and their families. It has ancient roots in medicine; its modern iteration began against the backdrop of new cures and life-sustaining technology which challenged conceptions of how to respect the sanctity of life.The first modern hospice was created by Saunders; it provided proof that palliative care works, and this has occurred in Israel as well (the first step). Another key step is usually skills development among clinicians; in Israel, few education and training opportunities exist so far. Specialty recognition also has not yet occurred in Israel. Service development remains limited and a major shortage of services exists, compared to the US. Research capacity in Israel is also limited. Policy to develop and sustain palliative care in Israel is underway; in 2009, the Ministry of Health established policy for implementing palliative care. However, it still lacks a financially viable infrastructure.We conclude that palliative care in Israel is emerging but has far to go. Adequate resource allocation, educational guidelines, credentialed manpower and specialty leadership are the key factors that palliative care development in Israel needs.     

Palliative care in Japan: current status and a nationwide challenge to improve palliative care by the Cancer Control Act and the Outreach Palliative Care Trial of Integrated Regional Model (OPTIM) study

Palliative care is an essential part of integrated cancer treatment. To improve palliative care throughout Japan, a nationwide demonstration project, the Outreach Palliative Care Trial of Integrated Regional Model (OPTIM) study, is ongoing. This article reviews the current status and the problems of palliative care in Japan and introduces the OPTIM study. Although the number of palliative care services is increasing, empirical evidence shows the quality of life of cancer patients is still inadequate. The OPTIM study is an intervention trial targeting 4 areas across Japan. Primary end points are quality of care reported by patients as well as the bereaved family, number of patients who received specialized palliative care services, and place of death. The interventions are comprehensively designed to cover all areas identified by the national task force. The OPTIM study will contribute to improve patients' quality of life by proposing a regional palliative care model suitable for Japan.     

Provider insights about palliative care barriers and facilitators: results of a rapid ethnographic assessment

Palliative care remains underutilized in the United States. This may represent failure of translation of research into practice (diffusion of innovation). Qualitative methods can identify barriers to and facilitators of diffusion of innovation. The aim is to identify potential barriers to and facilitators of inpatient palliative care utilization at a large urban hospital, as articulated by health professionals. Rapid ethnographic assessment methods were used among health professionals with subsequent extraction of predominant themes illuminating factors influencing adoption of palliative care services. In all, 3 stakeholder categories and 7 major themes emerged. Analysis revealed consistent need for organized, cross-disciplinary education/training services and a clearly-defined team approach. Denial at all stakeholder levels and in most themes was a barrier to implementation of palliative care. Consistent, defined educational, policymaking, and procedural standards were requirements for best adoption of palliative care. Denial was a striking obstruction to diffusion of innovation.     

Professional carers' experiences of providing a pediatric palliative care service in Ireland

In this article the authors present findings on professional carers' experience of providing pediatric palliative care to children with life-limiting conditions. For this qualitative study, part of a national pediatric palliative care needs analysis, the authors engaged in 15 focus group interviews and drew on the responses of open-ended questions to give voice to the experiences of professional carers and to situate the humanity of their caring reality. This humanity is articulated through three themes: clarity of definition and complexity of engagement, seeking to deliver a palliative care service, and the emotional cost of providing palliative care. Further analysis of these themes points to a work-life experience of skilled and emotional engagement with children, and their parents, in complex processes of caregiving and decision making. Pediatric palliative care occurs in an environment where parents shoulder a large burden of the care and professionals find themselves working in underresourced services.     

A road map for the last journey: home telehealth for holistic end-of-life care

The Advanced Illness/Palliative Care (AIPC) program started as a 2-year pilot project to determine if a telehealth model of care would benefit veteran patients with life-limiting illness. The goals of the project were to manage the physical, emotional, functional, and spiritual care needs during the last 2 years of patients' lives and to foster an earlier enrollment of patients into hospice by educating providers about palliative care. The AIPC program partners the skills and expertise of both spiritual and medical care practitioners, along with cutting-edge home telehealth devices to improve symptom management and quality of life for veterans and families coping with end of life.     

Family health and infant palliative care: listening the relatives of technology dependent children

This study discusses the creation of a new child palliative care program based on the Family Health Program, considering the level of care at home and yielding to family requests. Eighteen members of nine families of technology dependent children (TDC) who were hospital patients in the Instituto Fernandes Figueira (IFF) participated on the study. From those four were being assisted by its palliative care program Programa de Assistência Domiciliar Interdisciplinar (PADI); three were inpatients waiting for inclusion in the program, and finally two inpatients already included in PADI. PADI was chosen because it is the only child palliative care program in Brazil. The results are positive in regards to the connection established between the families and the health care team, the reception of the children, the explanation to the family concerning the disease, and the functional dynamics between the PADI and the IFF. As negative points, difficulties arose as a result of the implementation of the program, from its continuity to the worsening or illness of the entire family. In conclusion, although the PADI is the IFF's way of discharging patients, the domiciliary care provided by the Family Health Program, well articulated with the healthcare system, would be ideal for being the adequate assistance for it.     

Organizing palliative care for rural populations: a systematic review of the evidence

BACKGROUND: Palliative care services have developed mostly in urban areas. Rural areas typically are characterized by the lack of well-organized services, with primary care professionals, specifically GPs and community nurses, having to undertake most of the palliative care. Little is known, however, either of their views or of how best to organize palliative care in rural areas. OBJECTIVE: The aim of this study was to conduct a systematic literature review of studies that have examined the organization of rural palliative care and the views of professionals in rural areas. METHOD: Six electronic databases were searched for published studies between 1991 and 2001. Articles had to match against (i). MeSH or keyword terms relating to palliative, terminal or end of life care; and (ii). MeSH or keyword terms relating to rural. A data extraction framework was designed and used systematically by two reviewers to consider research question and method, sample characteristics, selection and size, study quality, summary results and implications. RESULTS: Twenty-six studies were identified. These were mostly questionnaire surveys and reports, and three qualitative studies. No randomized controlled studies or cohort studies were identified. Education and strategic issues were dominant research questions. Both the sample numbers and response rates in the surveys were variable. The qualitative studies had methodological strengths and elicited important views from nurses, carers and families. GPs were, however, unrepresented. Whilst the role of primary care emerged as an important theme, primary care professionals reported difficulties in obtaining education and training. There were also reported problems in symptom control and in the management of emotional issues such as bereavement counselling. Difficulties were also described in accessing specialist services such as hospices, and families were reported as having problems in accessing information. Developments in information technology such as telemedicine were seen as possible solutions to some of the problems. CONCLUSIONS: There is little published work on this topic. Most of the work identifies problems in the delivery of palliative care in rural areas. Whilst primary care professionals are seen as having a key role, there is a need to discover both their views and their needs in this field.     

A day in the life: a case series of acute care palliative medicine--the Cleveland model

Palliative care in advanced disease is complex. Knowledge and experience of symptom control and management of multiple complications are essential. An interdisciplinary team is also required to meet the medical and psychosocial needs in life-limiting illness. Acute care palliative medicine is a new concept in the spectrum of palliative care services. Acute care palliative medicine, integrated into a tertiary academic medical center, provides expert medical management and specialized care as part of the spectrum of acute medical care services to this challenging patient population. The authors describe a case series to provide a snapshot of a typical day in an acute care inpatient palliative medicine unit. The cases illustrate the sophisticated medical care involved for each individual and the important skill sets of the palliative medicine specialist required to provide high-quality acute medical care for the very ill.     

Out-of-hours palliative care in the UK: perspectives from general practice and specialist services

Palliative care within the community requires well coordinated multidisciplinary teamworking, involving both primary and secondary care practitioners. 'Out-of-hours' periods are a potentially problematic time for delivery of high quality care. We report on two national surveys-one of medical directors of out-of-hours general practitioner cooperatives, the other of medical directors of specialist palliative care units. The aim was to describe general practitioners' and specialists' perspectives on the availability and scope of community nursing and specialist palliative care services. The results point to wide variation in service provision within the community. The two groups differed strikingly in their perceptions, the general practitioners being much less positive than the specialists about the availability of specialist advice and admission to specialist units out of hours. Equitable out-of-hours palliative care services of high quality are unlikely to be achieved without dialogue between primary and secondary care based providers, local needs assessment and adequate resourcing.     

Establishing a district palliative care team for children

The children's palliative care team aims to ensure a high standard of care and support for children with life-threatening illnesses and their families. The team works through primary care teams and with hospital staff to ensure consistency and continuity of care and to maintain awareness of good practice and acts as a resource for staff from independent and voluntary agencies. The team consists of a consultant community paediatrician, clinical child psychologist, a dedicated social worker, sick children's trained district nurse, a senior member of staff from the children's ward, a health visitor, a school nurse, and a special school nurse. Other professionals are co-opted to the team as and when considered necessary, for example hospice consultant, pain specialist, dietician, paediatric pharmacist, chaplain. This paper describes how the children's palliative care team was set up and the first 2 years of its functioning.     

Providing a children's palliative care service in the community through fixed-term grants: the staff perspective

BACKGROUND: Children's palliative care services have recently been awarded fixed-term grants, aimed at improving the provision of care for children with life-limiting conditions in the community. We report findings of a qualitative study to investigate the experience of a cohort of community children's nurses from teams involved in setting up or extending community-based children's palliative care services. The purpose of the study was to identify factors that affect service delivery, from the staff perspective, and to suggest ways of promoting their sustainable development. METHODS: Semi-structured telephone interviews were conducted with 21 nurses from 12 different teams providing palliative care for children at home and in hospices. Participants were questioned about the services they provided and their own roles in that provision. NVIVO qualitative data analysis software was used to explore themes arising from the transcribed recorded interviews. FINDINGS: Key findings were the importance of physical location in facilitating multidisciplinary communication, the importance of defining role boundaries between existing and new providers of children's palliative care, and the potentially detrimental impact of insecure funding on referral patterns and recruitment to posts. Staff named the opportunity to offer direct 'hands-on' care to families, access to work-based support and networking opportunities as important factors in helping them cope with the stresses involved in managing finite resources and the emotional challenges of their work. CONCLUSIONS: The maintenance of a mixed caseload with a significant proportion of direct care, provision of ongoing support and clearly defined roles are recommended as means of bolstering the ability of staff to develop their services. The deliberate locating of services to enhance communication between staff and guidance on the preparation of funding applications may further contribute to the sustainability of these services.     

A syllabus for fellowship education in palliative medicine

Recent years have seen significant growth in palliative medicine training programs and positions. There are plans to pursue palliative medicine specialty status with the American Board of Medical Specialties and accreditation of fellowship programs with the American College of Graduate Medical Education. A work group of program directors, supported initially by the Cleveland Clinic and then by the American Board of Hospice and Palliative Medicine, has recently published standards for fellowship training. Despite this, fundamental questions remain about defining the field and delineating the knowledge and skills expected following completion of specialty training. In this article, we describe the first fellowship program in palliative medicine (PMP) in the United States, developed and supported by the Cleveland Clinic Foundation. The program has been implemented as part of the Harry R. Horvitz Center for Palliative Medicine, founded in 1987 as the first comprehensive integrated US program in this field. This training program, in existence since 1989, features a traditional rotational structure with an inpatient primary care service, inpatient consult services, and an outpatient consult/hospice service. This article outlines the syllabus developed for this fellowship, given what we believe to be the essential knowledge base for the field of palliative medicine.     

Increased access to palliative care and hospice services: opportunities to improve value in health care

Context: A small proportion of patients with serious illness or multiple chronic conditions account for the majority of health care spending. Despite the high cost, evidence demonstrates that these patients receive health care of inadequate quality, characterized by fragmentation, overuse, medical errors, and poor quality of life. Methods: This article examines data demonstrating the impact of the U.S. health care system on clinical care outcomes and costs for the sickest and most vulnerable patients. It also defines palliative care and hospice, synthesizes studies of the outcomes of palliative care and hospice services, reviews variables predicting access to palliative care and hospice services, and identifies those policy priorities necessary to strengthen access to high‐quality palliative care. Findings: Palliative care and hospice services improve patient‐centered outcomes such as pain, depression, and other symptoms; patient and family satisfaction; and the receipt of care in the place that the patient chooses. Some data suggest that, compared with the usual care, palliative care prolongs life. By helping patients get the care they need to avoid unnecessary emergency department and hospital stays and shifting the locus of care to the home or community, palliative care and hospice reduce health care spending for America's sickest and most costly patient populations. Conclusions: Policies focused on enhancing the palliative care workforce, investing in the field's science base, and increasing the availability of services in U.S. hospitals and nursing homes are needed to ensure equitable access to optimal care for seriously ill patients and those with multiple chronic conditions.     

Palliative care: the public health strategy

There is the knowledge to improve the Quality of Life, Dying and Death of cancer sufferers, other patients dying of chronic diseases, HIV/AIDS and the children and elderly terminally ill and their caring family members, an estimated 100 million people globally, if palliative care and pain relief would be available. Tragically however, palliative care is only reaching a lucky few. Two third of those in need of palliative care are in the low or middle income countries.The World Health Organization (WHO) has pioneered a public health strategy to integrate palliative care into existing healthcare systems as this offers the best approach for translating new knowledge and skills into evidence-based, cost-effective interventions that can reach everyone in the population, when incorporated by governments into all levels of their healthcare systems and owned by the community. The WHO Strategy starts by establishing four foundation measures, key components that are: 1) appropriate policies, 2) adequate drug availability, 3) education of the public, policymakers and the public and 4) implementation.The WHO Model has shown that it provides an effective strategy for countries to establish palliative care. The Open Society Institute has actively supported countries to establish National Palliative Care Programs according to these principles. Combined with a community strategy that involves the society through collective and social action"Palliative Care for All" indeed could become a reality.     

Providing regular relief; considerations for palliative care in the Netherlands]

Over the last few decades the attention devoted to the palliative aspects of medicine, particularly those in hospital care, has declined due to the emphasis on medical technology. In Anglo-Saxon countries a review of this development resulted in structured palliative care that benefited terminally ill patients with a progressive fatal disease, especially cancer patients. Due to increasing national and international criticism of both the practice of euthanasia (assumed to be too liberal) and the lack of attention devoted to structured palliative care in the Netherlands, the Dutch government decided to improve the structure of palliative care. The government's viewpoint is based on the assumption that good palliative care that includes adequate pain control benefits patient care and might eventually lead to fewer requests for euthanasia. The improvements to palliative care should be realised by means of improvements in the structure, training and knowledge. Six academic medical clusters have been designated as Centres for the Development of Palliative Care (Dutch acronym: COPZ) for a 5-year period. Each COPZ must develop the various aspects needed to improve palliative care within the region it serves and ensure that its activities are carefully coordinated with those in the other centres. Research will focus on measuring the efficacy of palliative care as well as ethical and epidemiological aspects. A government committee will assess the appropriateness of the activities undertaken by each of the centres.