The importance of funding palliative care education: a look to the future

This article outlines the position statement agreed by the Midlands Palliative Care Teachers' Professional Forum. Written by a member of the group, it includes suggestions from other members and was submitted for publication before the recent announcement of funds being available for palliative education for district nurses. The article highlights the challenges facing the adequate funding of specialist palliative care education and, in particular, for education departments within independent hospices. The statement recognizes the sensitive nature of subjects that ought to be included in palliative care education. Emphasis is placed on the provision of holistic multiprofessional and uniprofessional courses dedicated to enhancing the quality of palliative care. The article confirms the commitment of palliative care educationalists to this end and looks to continued commitment of adequate funding from NHS trusts and regions in supporting existing palliative care education and its ongoing development in response to clinical need.     

Regulating palliative care: the case of hospice

Palliative care services provided to patients and families vary substantially across hospices. Literature suggests regulation can act as a standardizing force in health care delivery. However, little is known about the effect of regulation on the delivery of palliative care in hospice and whether its effect differs for different types of hospice providers. We estimated the association between regulation, defined as Medicare hospice certification, and the delivery of palliative care in hospice using a nationally representative data set of 9,409 patients from 2,066 hospices surveyed in the National Home and Hospice Care Survey, 1992-2000. Using multivariable analysis, we found Medicare hospice certification was associated with a significantly broader range of services provided to patients (odds ratio [OR]=2.45; 95% confidence interval [CI]: 1.16, 5.17). This effect was significantly more pronounced (P-value for interaction=0.001) among for-profit hospices (OR=15.24; 95% CI: 4.06, 57.17) than among nonprofit hospices (OR=1.53; 95% CI: 0.75, 3.14). The effect of ownership on certification differences was most apparent for the provision of skilled nursing (prevalence difference in difference=52.4%), spiritual care (prevalence difference in difference=49.6%), and social services (prevalence difference in difference=48.1%). This study is the first to demonstrate the substantial association between the regulation of hospices and the provision of a multidisciplinary range of services to patients and families. It provides valuable insights regarding the potential role of regulation in standardizing the quality of palliative care across the increasingly diverse palliative care programs developing outside of hospice.     

Integrating case management and palliative care

Most seriously ill Americans live at home under the care of their primary physician and with the support of family caregivers. To reduce costs while simultaneously improving the quality of patient care, insurers have increasingly turned to the concept of case management. While case management is targeted to individuals with life-threatening illnesses, palliative care assessment and interventions are typically not included in the management protocols. An academic/care management/health plan partnership between Mount Sinai School of Medicine, Franklin Health, a care management organization, and South Carolina Blue Cross Blue Shield, was formed in 1998 to test the utility of integration of case management with formal palliative care assessment, feedback and recommendations to treating physicians, and ongoing support for implementation of a palliative care plan. The goal of the project was to ensure identification and optimal care of seriously ill patients' complex needs, while facilitating doctor-patient continuity, improving patient/family/physician communication, providing assistance with decision-making, ensuring quality care at home, and promoting efficient use of health care resources. Care management nurses were randomly assigned to a control (usual care) group or to the intervention (palliative care) group. Intervention nurses were trained in formal palliative care assessment and interventions, supported by treatment protocols and communication strategies with treating physicians. Measurements included symptom burden, prescribing practices, advance care planning status, satisfaction, and health care utilization. These results are pending completion of study run-out and analysis. Preliminary programmatic results indicate that combining palliative care with the case management approach is a logical, feasible, and effective strategy to improve the care of seriously ill patients living in the community. Franklin Health has offered the program to their entire client base because they feel that the integration of palliative care into their case management program improved the standard of patient care. Blue Cross Blue Shield of South Carolina has also chosen to sustain this enhanced model of care management for seriously ill patients.     

Decision-making in palliative care: a reflective case study

Critical examination of the processes by which we as nurses judge and reach clinical decisions is important. It facilitates the maintenance and refinement of good standards of nursing care and the pinpointing of areas where improvement is needed. In turn this potentially could support broader validation of nurse expertise and contribute to emancipation of the nursing profession. As pure theory, clinical decision-making may appear abstract and alien to nurses struggling in 'the swampy lowlands' (Schon 1983) of the realities of practice. This paper explores some of the key concepts in decision-making theory by introducing, then integrating, them in a reflective case study. The case study, which examines a 'snapshot' of the patient and practitioner's journey, interwoven with theory surrounding clinical decision-making, may aid understanding and utility of concepts and theories in practice.     

Lymphoedema treatment in palliative care: a case study

This article will focus on the evidence to support the treatment of a palliative patient who was diagnosed with cancer-related secondary lymphoedema. A case study approach has been adopted, which focuses on the anatomy and physiology of lymphoedema and how this is treated through an analysis of the treatment regimens. To establish the effectiveness of these treatment regimes, the use of objective and subjective tools will also be analysed to ascertain their importance within care. The findings of this case study and the supporting evidence indicate a positive correlation between the use of lymphoedema treatment methods in both limb volume reduction and quality-of-life outcomes. However, robust evidence is required to expand the importance of each treatment used in the area of lymphoedema management.     

Complex palliative care and transition: a case review

This case study assesses the effect that health and social care had on the chronic life-limiting condition of a young man going through transition from children's to adult services. He was taken into foster care at 16 years old and placed with his maternal uncle and aunt. Relevant literature is introduced to consider the impact that placement had on the foster family and the young person as he was transitioned over a two-year period to adult services, not only in terms of their adaptations, but also on his health and prognosis. Close liaison between social services and hospital and community teams meant that medical and social outcomes were markedly improved for this young man.     

Home-based primary care: the care of the veteran at home

Home-Based Primary Care is a program designed by the Department of Veteran Affairs (VA) to care for frail, medically complex, elderly veteran patients in their home setting. Unique to the VA, the program has similarities and differences in relation to typical Medicare/Medicaid home health and hospice programs. The VA has demonstrated success in maintaining the patients' independence and quality of life as well as exceptional management of chronic disease and prevention.     

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.     

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.     

Issues and challenges in palliative care for children with cancer

Although the majority of children with cancer are cured of their illness, the children who die from their disease or complications require special care at the end of life. We present special issues and challenges unique to pediatric palliative care and suggest ways in which we can face these issues and address the challenges. The care must be family centered and balance the needs of the health-care system, the child, and the family. The way in which the care is delivered, the services provided, and the place in which that care is given are not carved into a simple protocol. Quality of life is an important concept that is often overlooked. Educational initiatives for patients, families, health-care providers, and third-party payers are essential. Reimbursement for palliative care services presents a large barrier to provision of appropriate services to all children and families in need. Hypothesis-driven research must be developed to help us learn more about how best to deliver end-of-life care to children and their families.     

Using the BIS monitor in palliative care: a case study.

The majority of deaths occur in the hospital setting, and of these deaths, 20% are in an intensive care unit (ICU). Care provided on the ICU shifts from curative to palliative when a patient's death appears to be imminent. Nursing care decisions made at the end of life are critical to the experience of the patient, and leave a lasting impression on the patient's family and the nurses involved in providing care. One of the main concerns of family members during this time is the comfort of their loved one. Assessing comfort can be especially difficult in the patient who is unresponsive. One tool that can assist the nurse in the assessment and management of analgesic effectiveness is the Bispectral (BIS) Index Monitor. As the use of BIS monitoring grows in the ICU setting, more information will be available that will help all involved in the palliative care process ensure patients have a peaceful death.