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.     

Applying evidence to palliative care

OBJECTIVES: To discuss the evidence-based practice process for palliative care, from defining a clinical problem to implementation and evaluation of an evidence-based practice change. DATA SOURCES: Professional experience, literature, practice guidelines, and web sites related to evidence-based practice and palliative care. CONCLUSION: Nurses caring for patients needing palliative care need evidence from multiple sources. Using a systematic process to find and appraise evidence followed by strategically planning for implementation and evaluation of evidence-based practice changes optimizes the likelihood of enhanced patient care. IMPLICATIONS FOR NURSING PRACTICE: The integration of evidence-based practices into palliative care nursing will empower nurses to promote optimal patient outcomes and decrease practice variability.     

Complementary therapies in palliative care: a summary of current evidence

Complementary therapies are often cited as a possible alternative to the management of symptoms in palliative care, as another element in the armoury for coping with unmanageable problems. But how efficacious are these therapies, and what is the evidence to support their use in symptom management? Patients who are in the terminal stages of illness or require palliative care are in a very vulnerable position, so are they being exploited or are there real benefits from using complementary therapies? This article review some of the evidence currently available.     

Home palliative care as a cost-saving alternative: evidence from Catalonia

The aim of this study was to provide a comparative assessment of the health care resources consumed during the final month of life of patients undergoing palliative treatment and who died from cancer in the town of Mataró, Spain, in 1998, with respect to whether they benefited from home care teams or not. Relevant differences in the use of health care resources were found between the groups. Patients in the standard care group presented more hospital care admissions and longer length of stay, higher use of emergency and outpatient visits, and greater use of palliative care units within nursing homes than patients in the home care group. The monetary quantification of the use of the above-mentioned resources showed a 71% increase in the cost per patient in the standard care when compared to home care. According to the results of this study, home care teams for terminal cancer patients allow for savings to the health care system. A series of policy making and health services research implications are discussed.     

A question of evidence: decision-making in palliative care nursing

Nurses are urged to integrate research evidence into their practice. Current perspectives of evidence-based practice promote a hierarchy of empirical evidence. Notwithstanding the contribution of empirical knowledge, this approach constrains our understanding of the value and contribution of other forms of knowledge. Shifting to a model of 'evidence informed practice', where multiple forms of knowledge are considered and valued, may better reflect the complexities of end-of-life care and offer a fuller understanding of palliative care nursing best practice.     

Paediatric palliative care in Malaysia: Survey of knowledge base and barriers to referral

Abstract

Background

Paediatric palliative care in Malaysia is underdeveloped, but there is recent increasing awareness and interest in this speciality. In September 2012, the Health Minister of Malaysia launched an initiative to support a nationwide provision of this service.

Aim

This study aims to explore the knowledge and practice of healthcare providers and their barriers to referral for palliative care prior to development of a nationwide service.

Design

Self-administered questionnaire survey.

Participants

Hospital-based paediatricians and paediatric nurses.

Results

There were 292 participants (69 paediatricians). The majority (92.7%) were females and the median age for the paediatricians and nurses was 37 years (range 27–60) and 31 years (range 21–58), respectively. General paediatrics was the predominant speciality of the respondents (61.3%) and 59.3% had more than 5 years paediatric experience. Of the 28.8% of the responders who thought they have basic palliative care knowledge, 40.5% believed morphine used in palliative care is addictive, 34.9% thought palliative care hastens death, and 44.3% were neutral or agreed that palliative care is associated with euthanasia. Over a quarter of all respondents (28.2%) professed to be confident in providing palliative care and 30.1% were confident in providing bereavement support. Of the 29% paediatricians confident in providing palliative care, less than half were confident of controlling pain or dyspnoea at end-of-life. The most common perceived barrier to referral by paediatricians (79.4%) was the lack of accessible palliative care services.

Conclusion

There is a lack of knowledge and understanding of palliative care among healthcare providers. Focused training and supportive policies are necessary to develop this service in Malaysia.     

An evidence base for a palliative care chaplaincy service in Northern Ireland

Palliative care encompasses spiritual as well as physical, social and psychological aspects. Spiritual care has been identified as a key concern of dying patients. During an audit of the Northern Ireland Hospice chaplaincy service against the national Standards for Hospice and Palliative Care Chaplaincy (2003), 62 patients' spiritual needs along with their interactions with the hospice chaplains were assessed by using a questionnaire survey and reviewing data recorded on their pastoral care notes. Findings suggest that the Standards were useful for assessing and addressing spiritual needs. Access to the chaplaincy service (Standard 1) was partially met and Standard 2's spiritual criteria were fully met. The participants, of whom 92% had a faith in God or a Higher Being, highlighted their top six spiritual needs as: to have the time to think; to have hope; to deal with unresolved issues; to prepare for death; to express true feelings without being judged; to speak of important relationships. The majority of the participants (82%) felt their spiritual needs had been addressed and viewed their interaction with the chaplaincy service positively. Recommendations were made relating to improve communication of chaplaincy services.     

Supportive and palliative care needs of families of children with life-threatening illnesses in Western Australia: evidence to guide the development of a palliative care service

OBJECTIVE: To obtain feedback from families of children receiving palliative and supportive care about their care needs in hospital and in community settings. DESIGN: A two-phase combined quantitative and qualitative study. SETTING: Western Australia. PARTICIPANTS: 134 parents and 20 service providers. RESULTS: Analysis indicated the concept of palliative care is poorly understood by health professionals and by parents. Many families are affected emotionally, financially and physically by the burden of caring for children with life threatening or chronic conditions requiring complex care at home. Parents indicated the need for clear and honest information about their child's condition and prognosis throughout the trajectory of illness and perceived this had been lacking. Families required financial and practical assistance with providing care from their children at home. Parents also wanted more practical resources and information to assist with the management of their child's nutrition and pain, as well as support for their other children. The level of respite (in home and residential) was perceived to be insufficient and inequitable. Parents also required access to, and advice from, multidisciplinary health professionals when caring for their child at home. There was a perceived lack of coordination between community services and the hospital. CONCLUSION: Education of health professionals and parents regarding the concepts and introduction of palliative and supportive care is required. Care for children and their families should be coordinated by a multidisciplinary team in consultation with children and their families, and linked and integrated with the treating hospital in collaboration with community services. More inclusive criteria are required for community services including practical aids and respite care.     

Is elderly care research-based?

Nurses working with elderly people, and students considering the specialty as a career option, may develop negative attitudes about the value of the work they do. These often derive from the perception that their efforts do not improve patients' problems, and a misconception that what they do is intuitive rather than based in research. Such tensions can lead to the development of 'burnout' and the rapid demoralisation of the workforce. Roger Watson shows how nursing elderly people, particularly those with dementia who live in continuing care settings, calls on high degrees of technical and interpersonal skills, and demonstrates how the roots of the specialty are deeply entrenched in research.     

Children's palliative care: a global concern

Children's palliative care (CPC) is a specialty in itself, albeit closely related to adult palliative care (World Health Organization (WHO), 2002). However, although there are many children who require palliative care, in much of the world CPC has a poor profile and is inaccessible to those who need it (Downing et al, 2010; Knapp et al, 2011). The provision of high-quality palliative care for children is a global concern, with 27% of the world population being under the age of 15, rising to as many as 49% in countries such as Uganda (WHO, 2010). It has been estimated that as many as 7 million of these children around the world will need palliative care each year (Rushton et al, 2002), although the true figure is likely to be higher. The public health approach to palliative care is key to the development of CPC services, as is the development of models that integrate services into existing health structures.     

Challenging the framework for evidence in palliative care research

This paper examines the debate about best evidence within the public health literature and proposes that similar arguments and concerns exist with respect to use of current evidence-based approaches to implementing research and evaluating the literature in palliative care. Whilst randomized controlled trials (RCTs) remain the gold standard and are appropriate in many instances of palliative care research, there is a need for an alternate research design framework that incorporates contextual and compositional effects pertinent to palliative care research. A framework, entitled Equity-Based Evidence, is discussed as an approach to evidence-based knowledge development in palliative care.     

The need for palliative care for patients with non-cancer diseases: a review of the evidence

The palliative care needs of patients with cancer are understood and managed well by specialist palliative care services. Patients dying of non-cancer diseases are rarely offered these services. A literature review was conducted to determine the physical and psychosocial problems of patients dying from non-cancer diseases. Studies were identified using a systematic keyword search of six electronic databases. Fourteen studies were identified and assessed according to rigour of design. Findings suggest that some patients dying of non-cancer have needs comparable with those dying of cancer. Low response rates, subject bias, and measurement bias mean that findings should be viewed with caution. More prospective, rigorously designed research is necessary to identify which patients with non-cancer diagnoses may benefit from specialist palliative care.