Perceptions of the role of the hospital palliative care team

AIM: The aim of this study was to understand staff perceptions of the role of the hospital palliative care team and to identify knowledge and confidence levels of general staff caring for patients with palliative care needs. METHOD: A survey questionnaire tool was used with a response rate of 51 per cent. Participants included nurses, health care assistants and doctors. RESULTS: The study highlighted several misconceptions about the role of the palliative care team, but demonstrated that the clinical staff surveyed were confident in their palliative care skills, with the exception of discharge planning, despite the fact that only 26 per cent of nurses reported having undergone training in palliative care. It identified that HCAs felt confident in caring for dying patients yet had little confidence in dealing with distressed relatives or speaking to patients and families about death. It was also interesting to note that trained nurses felt confident in their symptom control skills, and they rated training in this area as one of the top priorities. CONCLUSION: The findings have considerable implications for palliative care services. Professional education should continue to focus primarily on symptom control and communication skills training, but stress management training should be considered. Staff need to be clear about how to obtain advice and what support is available for cancer patients. Further research is required to understand the needs of HCAs and potential models for education and support.     

Home-based palliative care for children: the case for funding

Paediatric palliative care services have grown up in response to local needs with the result that provision is patchy and in some areas non-existent. Funding for existing services comes from a variety of sources and in the case of teams funded in 2003 from The New Opportunities Fund, there is uncertainty about future provision as funding streams come to an end. This article illustrates how home-based palliative care achieves the objectives of the NHS Plan (DH 2000a) and makes the case for the continuation of paediatric palliative care teams already established through New Opportunities Fund (NOF) funding as these provide a ready made, quality service meeting the government agenda and addressing the needs of patients in a place and at a time to suit them.     

The Diana community nursing team and paediatric palliative care.

This article describes the work of the Diana community nursing teams, a new nurse-led service funded by the Department of Health (DoH) to commemorate the life and work of Diana, Princess of Wales. It identifies paediatric palliative care as an emerging specialty within children's nursing and discusses how children and young people with life-limiting/threatening conditions and their families may benefit from this new service. It is anticipated that the Diana teams will work with existing services such as children's hospitals, outreach services, children's hospices, social services and education and voluntary agencies. A key element of this service will be the ability of Diana team members to work across professional and organizational boundaries to provide a seamless care service and promote the concept of 'joined-up working' (Hyman, 1998). Education in this specialty, preferably multidisciplinary education, is needed so that healthcare professionals in this field can share knowledge, skills and research findings and deliver up-to-date care based on clinical effectiveness.     

When death precedes birth: experience of a palliative care team on a labor and delivery unit

BACKGROUND: With increasing recognition and availability of palliative care, interdisciplinary palliative care teams continue to discover novel opportunities to enhance patient-centered care and improve hospital staff satisfaction. As a new palliative care consultation service in a large urban academic tertiary care setting, we found unanticipated palliative care needs on the labor and delivery unit. Women experiencing sudden intrauterine death, and the health care providers who care for them, have unique palliative care needs. CONCLUSION: In some circumstances an interdisciplinary palliative care team, may help to address acute grief and provide ongoing staff support. Case examples of our palliative care team's experience are instructive.     

A model of palliative care for the adolescent with cancer

Adolescents are a distinct group in paediatric and adult cancer and palliative care specialities. The process that is experienced by the patient and his/her family of the transition from health to living with a life-threatening illness and from a life-threatening to a life-limited illness raises specific issues for service provision. The adolescent population presents with a wide variety of physical and emotional maturity that highlights the need for health professionals to be equipped with skills in adolescent care, cancer care and specialist palliative care. Due to the small number of patients who will require such a service in any one health district in the UK this is not usually realistic. This article discusses a model of care that promotes collaborative professional practice in a cancer centre between the paediatric department and adult specialist palliative care team that in turn extends a philosophy of care into cancer units and the community setting.     

Provider perspectives on palliative care needs at a major teaching hospital

Jericho Metropolitan Hospital (JMH) is a major Australian teaching hospital which lacked a designated palliative care service at the time this study was conducted. A questionnaire addressing palliative care service needs, and educational and support needs of staff, was sent to 267 multi-disciplinary oncology staff at JMH. A response rate of 83% was achieved. Staff identified a number of palliative care needs that were being particularly poorly addressed by existing services. These included: spiritual support, cultural needs, grief and bereavement support, pleasant surroundings, adequate privacy and facilities for families. The majority of respondents identified the following issues as critical problems in palliative care provision: lack of a designated palliative care service, lack of palliative care education of staff, unmanageable caseloads and inadequate physical facilities for the provision of care. Only 24% of respondents reported having had any palliative care education, and 92% of respondents expressed a need for further education. The majority of respondents (79%) expressed a need for improved staff support. There was a significant association between perceived need for improved support and professional discipline (chi2 = 31.33, P < 0.002), with medical staff being significantly less likely than other staff groups to report a need for improved support. Overall, the health providers surveyed identified major deficiencies in the provision of palliative care to cancer patients at JMH and in the palliative care education and support for staff caring for terminally ill cancer patients. The findings support the need for a designated palliative care service at JMH to improve the standard of care of dying cancer patients, and the need for improved palliative care education and support for staff.     

The developing role of children's nurses in community palliative care

This article addresses some of the contemporary issues in relation to providing palliative care for children in Ireland, particularly focusing on the creation of the specialist palliative care nursing outreach posts. The recent publication of an Irish national policy on palliative care for children with life-limiting illness is welcome news for paediatric nurses in Ireland. Children are valued members of society and have a right to receive quality health care and support appropriate to meet both children and the families' precise needs. However, community services for children with life-limiting illnesses remain inadequate, with many parents and families struggling to provide palliative care for children in the home. Currently, community nurses, who are not always registered children's nurses, are providing palliative care for children at the end of life. These nurses may not fully understand the specific needs of critically or chronically ill children and their families. In addition, there are no specific palliative care educational programmes in Ireland with regard to end-of-life care for children. The challenges of providing palliative care to children and their families in relation to symptom control, controversial ethical and legal issues, and emotional and practical support, mean that advanced knowledge is required in order to progress the agenda and thus provide excellence in children's palliative care in Ireland. It is important that the agenda is moved forward so that children and their families requiring palliative care and nursing support do not suffer from a lack of professional provision for their needs.     

Provision of palliative care education in nursing homes

AIM: To map the nature and extent of existing palliative care education activities. METHOD: Data was gathered from questionnaires, face-to-face and telephone interviews, visiting palliative care teams across Mount Vernon Cancer Network and attendance at conferences, meetings and seminars. A comprehensive needs assessment for palliative care education within nursing homes was completed. RESULTS: The findings revealed inequality across the network with regard to education provision and uptake of palliative care services. Recruitment of overseas staff and a transient workforce were both cited as major difficulties in implementing education programmes. Funding of these programmes and responsibility for providing the education remain unclear. CONCLUSION: There was a real and urgent need for palliative care training in the network area and there was scope for a variety of approaches to be adopted to deliver the required training.     

Establishing need for palliative care services for children/young people

This article describes how epidemiology may be used effectively to provide hard statistical data upon which to justify and base the development of paediatric palliative nursing services within a defined locality. Through an analysis of mortality data this study identified the number of children and young people with life-limited (LL) conditions who met the criteria for paediatric palliative care (PPC) in South Glamorgan. Findings from this were then related to the provision of services, including nursing services, required to meet the PPC needs of children and those of their families within such a population. Outcomes identify the need for a multiprofessional/multiagency approach to care provision, including family nursing, respite and terminal care as well as postbereavement support. This study highlights how epidemiology may be used effectively to identify unmet needs and promote better systems of care delivery. Studies such as this strengthen the argument for nurses to cast aside what has been perceived as a hesitancy to use quantitative methods of research (Bonnell, 1999). Epidemiology, as a methodology, may now be deemed as yet another vital weapon in the nurse researchers' armoury aimed at providing evidence-based health care.     

Developing a pain and palliative care programme at a US children's hospital

Although a number of successful adult combined pain and palliative care programmes exist worldwide, integrated paediatric pain and palliative care services are rare. This article reviews epidemiology, definition, symptom prevalence and myths in paediatric palliative care. It then describes the development of the Pediatric Pain and Palliative Care Programme at the Children's Hospitals and Clinics of Minnesota, USA. This paediatric service aims to control acute, chronic and recurrent pain in all in- and outpatients at the hospitals, with follow-up at home. The team also provides holistic, interdisciplinary care for children and teens with life-limiting or terminal diseases, and their families. It is the only paediatric hospice provider in the state of Minnesota. One of the advantages of an integrated Pain and Palliative Care Programme such as the one described in this article, may be the provision of care in a continuum from acute, chronic or recurrent pain to palliative care and hospice care. This example shows, that integrated paediatric pain medicine and palliative care programmes can be successfully implemented in a children's hospital setting.     

Paediatric palliative care: a lack of research-based evidence

Providing the best possible care for the child and family is paramount to health professionals working in paediatric palliative care. However, there is little research which enables practitioners to question their current practice. There are concerns about conducting research on children receiving palliative care at such a sensitive time for the child and his/her family. These concerns must be considered against the growing demand for clear standards and guidelines for practice within health care. According to the Department of Health (DoH) there is no place within the modern healthcare system for the adoption of unproven theories or outdated care (DoH, 1998). While no-one would question the dedication and care being delivered to children and their families by well-trained staff, the lack of research is a cause for concern. A group of students undertaking a degree module in paediatric palliative care identified the lack of literature and research in this area and have undertaken a review of the available literature.     

Developing an educational programme in paediatric palliative care

Paediatric palliative care has increasingly been recognised as a specialist area of practice. Essentially it is a holistic approach to care that embraces a range of elements concerned with not only the management of symptoms but also the psychosocial and spiritual needs of the child and family through death and bereavement. Children requiring palliative care represent a diverse patient group whose illness trajectories are often prolonged and unpredictable and this creates much stress for children themselves, their families and professionals who support them (Price and McFarlane, 2006). Such an approach to care is unique and the development of paediatric palliative care educational programmes requires careful and thorough planning, with the specific needs of the child and family being pivotal to the process. This article recounts the development of the first paediatric palliative care programme in Ireland using the curricular cycle described by Peyton (1998).     

Palliative care in the community for children with cancer in South East England.

In-depth interviews and discussions were held with 40 different professionals in South East England involved in managing palliative care for children with cancer in the community. Participants included paediatric oncologists and outreach nurse specialists in tertiary centres, paediatricians in shared care units, children's community nurses, general practitioners, social workers and child psychologists. The research examined palliative care services available in the region, exploring attitudes to both current provision and possible service improvements. Providing palliative care in the community involves multi-agency collaboration and the study highlighted a range of different approaches to case management with the diversity of resources available. Key improvements proposed by health-care professionals included: better communication and liaison between all the professionals involved; clearer allocation of roles and responsibilities; 24-hour availability of specialist advice on palliative care for children with cancer; faster access to social work and psychology services at the community level; continuity of nursing and respite care. The provision of specialist local palliative care services for children with cancer was generally rejected. The participants favoured improving community palliative care for all children with life-limiting or life-threatening conditions with community nursing teams providing continuity of care and outreach nurses providing specialist advice and support.     

Palliative care nursing for children in the UK and Ireland

Currently, there are many changes taking place in the area of paediatric palliative care. These include the role of the nurse, development of national policies, and recommendations for the future of paediatric palliative care. This article discusses palliative care for children with life-limiting conditions in the UK and Ireland, highlights national and international developments in this area, describes current services, and makes recommendations for future developments. Paediatric palliative care should be holistic, family centred and tailored to meet the needs of each child and family. Palliative care should promote autonomy and allow informed choices regarding end-of-life care. Palliative care should begin at the time of diagnosis and continue beyond illness, through the bereavement process. It should be adaptable to allow care delivery in any setting; home, hospice or hospital. Health professionals providing paediatric palliative care should be appropriately trained in this specialist field and the best interests of the child should always be at the forefront of care.     

End-of-life palliative home care for children with cancer: A qualitative study on parents’ experiences

Background

There is insufficient knowledge available about the impact of paediatric palliative care at home on meeting family needs and ensuring the highest quality of care for the dying child. The aim of this study was to elucidate parents’ experiences of how and why home-based paediatric palliative care impacted the entire family during their child's final phase of life.

Methods

The study used a qualitative design. Semi-structured interviews were conducted with the bereaved parents of children who had received palliative care at home from a paediatric cancer hospital department programme that was based on collaboration with community nurses and the paediatric palliative care service. The interviews were transcribed verbatim, and qualitative content analysis was applied. The Ecocultural theory was used to explain the findings.

Results

Three main themes emerged: (1) involvement enabling a sense of control and coping, (2) sustaining participation in everyday family life routines and (3) making room for presence and comfort during and after the end-of-life trajectory.

Conclusion

End-of-life palliative care at home can enable parents and other family members to maintain a sense of control, presence and semblance of everyday life. It contributes to managing and alleviating the burden and distress during the last phase of the child's life and during bereavement. We suggest that healthcare professionals support family members in participation and daily life routines and activities during a child's EOL care, as it affects the well-being of the entire family.     

Multidisciplinary perspectives of music therapy in adult palliative care

BACKGROUND: Music therapy aims to provide holistic support to individuals through the sensitive use of music by trained clinicians. A recent growth in music therapy posts in UK palliative care units has occurred despite a paucity of rigorous research. Study aim: To explore the role of music therapy within multidisciplinary palliative care teams, and guide the future development of the discipline. DESIGN: In-depth qualitative interviews with 20 multidisciplinary colleagues of music therapists, based in five UK hospices. RESULTS: Analysis of interview material revealed a number of themes relevant to the study aims. Music therapy was valued by most interviewees; however there exists some lack of understanding of the role of the music therapist, particularly amongst nurses. Emotional, physical, social, environmental, creative and spiritual benefits of music therapy were described, with some benefits perceived as synergistic, arising from collaborations with other disciplines. Interviewees found experiencing or witnessing music therapy is effective in developing an understanding of the discipline. CONCLUSION: Music therapy is an appropriate therapeutic intervention for meeting the holistic needs of palliative care service users. More understanding and integration of music therapy could be encouraged with collaborative work, educational workshops, and the utilization of environmentally focused techniques. The study merits further research to explore and develop these findings.     

Transition from paediatric to adult service in epidermolysis bullosa

Children with chronic health needs are living longer than they have in the past (Department of Health, 2006) and are becoming adults with complex health needs. This has implications for the health service, which needs to address the arrangements for transfer of young adults from paediatric to adult centres. This article describes the transitional care arrangements established at Great Ormond Street Hospital to address the needs of children with severe epidermolysis bullosa as they move on to adult care. It emphasises the close liaison between paediatric and adult clinical nurse specialists, and recognizes the role of the wider family who also have long-standing links with staff in the paediatric environment and can find transfer to an adult unit traumatic. The article concludes by recognizing that the young adult and specialist teams need to work together to continue the transition process for future generations.     

Teaching palliative care to critical care medicine trainees

OBJECTIVES: Palliative care is an important component of critical care medicine. Few fellowship programs have developed a curriculum designed to teach palliative care precepts to trainees. We describe our 2-yr experience in teaching palliative care to multidisciplinary critical care medicine fellows. DESIGN: Two-consecutive-year palliative care training for unselected critical care medicine fellows at a large, urban, university, tertiary care medical center. INTERVENTIONS: We 1) identified palliative care skills and knowledge that first-year critical care fellows should acquire; 2) developed a curriculum to teach those skills and knowledge, including required readings, small group lectures and skills sessions that included role-playing to modify skills and attitudes, and (in year 2) experiential learning on a hospital-based palliative care rotation; and 3) attempted to evaluate the curriculum with attitude and knowledge assessments. RESULTS: A total of 35 fellows participated in the palliative care training during the 2 yrs reported. Seven fellows participated in a clinical rotation in palliative care. Fellows evaluated usefulness of the small group sessions between 4.4 and 4.9 on a 5-point Likert scale. Four of seven fellows rated the clinical rotation quality at 3/5. Pretest and posttest knowledge mean scores were 58% and 69%, respectively. Problems included providing time for fellows to participate in the clinical rotation and negative attitudes regarding the relevance of palliative care to their future in critical care. CONCLUSIONS: Palliative care training for critical care fellows is feasible. Fellows value skills training more than a clinical rotation in palliative care. Baseline knowledge of palliative care is low.     

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.     

Teaching small groups in palliative care

Small group learning (i.e., tutorial, seminar, or small problem-solving class) is uniquely suited to transformative change as the ultimate goal of education, and especially appropriate for use in teaching about palliative care. The small group can be a fertile environment for both individual and communal development on both personal and professional levels by recognizing the unique needs of small group facilitation, and developing necessary faculty skills, and by modeling thoughtful preparation, reflective execution, and perceptive feedback. The small group learning approach focuses on learning facilitation and enhancing students' communications skills, which are vital to providing effective, patient-centered palliative care.