Palliative Care Service Delivery Research Articles

Editorial introductions

Editorial introductions

Community Palliative Care

Palliative care, although relatively new in the United States, has grown tremendously over the past 10 years. Historically, in this country, it has been predominantly delivered in an acute care setting. Many different models of delivery within that setting have evolved: consultation, primary care, and unit based. It has been successful with many studies substantiating this. But patients spend the majority of their time at home. Outpatient palliative care programs are growing, and recent studies indicate good outcomes. Literature demonstrates that, as with the inpatient services, these community programs come in many staffing matrixes with different models of delivery and under many different monikers. This article explores the innovative approach that one community devised to provide palliative care services to patients and their families outside an acute facility. Referrals, staffing, care setting, and care processes that were developed when the patient and family are placed at the center of the care plan are discussed. The article describes this non–hospital-funded, interdisciplinary, predominantly home care model of delivery of palliative care services.

CC1-03: Documentations of Advanced Health Care Directives in the Electronic Health Record: Where Are They?

Background/AimsAdvanced Care planning is becoming a major public health concern. The ambulatory care setting is a new frontier for delivery of palliative care services. Understanding patients? preferences and documenting them in an accessible location can facilitate honoring patients? wishes. However, physicians document Advanced Health Care Directives (AHCD) in various locations within EpicCare EHR, including progress notes, scanned documents, and the problem list. The aim of the study is to identify the locations of AHCD decision documentations in the EHR.MethodsExtensive search of AHCD terms in EPIC EHR, e.g., Physician Orders for Life-Sustaining Treatments (POLST), living will, and power of attorney, using 10 years of EHR data (2000?2010) in a large multispecialty ambulatory group practice in Northern California.ResultsA total of 76,887 patients had a documented AHCD decision. About 69% (53,270 of 76,887) had a decision in progress notes, 43% (33,265/76,887) in scanned documents, and 34% (26,146/76,887) in problem list. Overall, 36% of patients (28,045/76,887) had only progress note documentations, 25% (19,116/76,887) had only scanned documents, 16% (12,606/76,887) had both progress notes and problem list, and 12% (8,964/76,887) had documentation in all 3 locations. POLST documents made up 2% (853/37,706) of scanned documents. About 59% of patients (45,240/76,887) were >= 65 at the time of their first AHCD documentation. About 57% (44,067/76,887) were female. About 90% (5,689/6,347) of patients who died had their first AHCD decision documented within 5 years of their death. Documentation was updated nearing death - 90% (3,594/3,989) of patients who died and had more than one documented decision had their last decision documented within a year of death.DiscussionMost AHCD decisions are in progress notes in the EHR which can be difficult to access for busy physicians. Physicians? effort to elicit patient preferences for AHCD and subsequent decisions may be wasted if these decisions cannot be readily found in the EHR in actionable formats. Scanned documents containing signatures of the patient, surrogate, and if applicable, the physician, may be more actionable than text in progress notes without proper signatures and flagging. Standardizing the location of these important decisions needs to become a priority.

Hospital Administrators' Views on Barriers and Opportunities to Delivering Palliative Care in the Emergency Department

We identify hospital-level factors from the administrative perspective that affect the availability and delivery of palliative care services in the emergency department (ED). Semistructured interviews were conducted with 14 key informants, including hospital executives, ED directors, and palliative care directors at a tertiary care center, a public hospital, and a community hospital. The discussions were digitally recorded and transcribed to conduct a thematic analysis using grounded theory. A coding scheme was iteratively developed to subsequently identify themes and subthemes that emerged from the interviews. Barriers to integrating palliative care and emergency medicine from the administrative perspective include the ED culture of aggressive care, limited knowledge, palliative care staffing, and medicolegal concerns. Incentives to the delivery of palliative care in the ED from these key informants' perspective include improved patient and family satisfaction, opportunities to provide meaningful care to patients, decreased costs of care for admitted patients, and avoidance of unnecessary admissions to more intensive hospital settings, such as the ICU, for patients who have little likelihood of benefit. Though hospital administration at 3 urban hospitals on the East coast has great interest in integrating palliative care and emergency medicine to improve quality of care, patient and family satisfaction, and decrease length of stay for admitted patients, palliative care staffing, medicolegal concerns, and logistic issues need to be addressed.

IMhPaCT: an education strategy for cross-training palliative care and mental health clinicians

The Australian Integrated Mental Health and Palliative Care Task (IMhPaCT) project aimed to improve the quality of palliative care for people with a severe and persistent mental illness and those who develop mental health issues as a response to their diagnosis of a life-limiting illness. These patients and families are generally cases of high complexity and require strong collaboration and cooperation across various service sectors. Education across both palliative care and mental health services was identified as a key objective in improving palliative care service delivery in this patient population. This article specifically addresses one aspect of the project-the education strategy. The processes of development, implementation, and evaluation of outcomes are discussed.

Development of a Rural Palliative Care Program in the Calgary Zone of Alberta Health Services

Specialized rural models of palliative care are greatly needed to address the challenges rural communities face in providing palliative care services and to ensure that their unique strengths and needs are considered. In late 2005, a Rural Palliative Care Program was developed to support primary care providers in delivering palliative care to patients in rural communities outside of Calgary, Alberta, Canada. The program was grounded in the needs of individual communities, incorporated integral roles for local champions, and adopted pre-existing, accepted rural structures and processes. Needs and gaps in rural palliative care service delivery were identified and prioritized. The following actions were taken to address the top six priorities: 1) more accessible palliative care education opportunities with a rural focus were provided to health care professionals; 2) linkages with rural and urban resources were strengthened and access to specialists and procedures was improved; 3) strategies were implemented to improve psychosocial support for patients and families; 4) resources were developed to facilitate rural home deaths; 5) opportunities were expanded for education and utilization of volunteers; and 6) a mobile specialist consultation team was developed to support rural health care professionals and their patients in their rural communities. In its first four years, the team consulted on 640 patients, nearly three-quarters of whom died in their rural communities. Rather than imposing an urban outreach strategy, the development of a rural-based program through respectful engagement of local providers has proven to be crucial to the success of this rural palliative care program.

The palliative care model for emergency department patients with advanced illness.

Large gaps in the delivery of palliative care services exist in the outpatient setting, where there is a failure to address goals of care and to plan for and treat predictable crises. While not originally considered an ideal environment to deliver palliative care services, the emergency department presents a key decision point at which providers set the course for a patient's subsequent trajectory and goals of care. Many patients with serious and life-threatening illness present to emergency departments because symptoms, such as pain or nausea and vomiting, cannot be controlled at home, in an assisted living facility, or in a provider's office. Even for patients in whom goals of care are clear, families often need support for their loved one's physical as well as mental distress. The emergency department is often the only place that can provide needed interventions (e.g., intravenous fluids or pain medications) as well as immediate access to advanced diagnostic tests (e.g. computed tomography or magnetic resonance imaging). Palliative care services provide relief of burdensome symptoms, attention to spiritual and social concerns, goal setting, and patient-provider communication that are often not addressed in the acute care setting. While emergency providers could provide some of these services, there is a knowledge gap regarding palliative care in the emergency department setting. Emergency department-based palliative care programs are currently consultations for symptoms and/or goals of care, and have been initiated both by both the palliative care team and palliative care champions in the emergency department. Some programs have focused on the provision of hospice services through partnerships with hospice providers, which can potentially help emergency department providers with disposition. Although some data on pilot programs are available, optimal models of delivery of emergency department-based palliative care have not been rigorously studied. Research is needed to determine how these services are best organized, what affect they will have on patients and caregivers, and whether they can decrease symptom burden and health care utilization.

Palliative care nursing in rural and urban community settings: a comparative analysis

Nurses have key roles in the coordination and delivery of community-based palliative care. The purpose of this study was to examine the differences between rural and urban community nurses' delivery of palliative care services. A survey was distributed to 277 nurses employed by a community agency in Ontario, Canada, and a 60% response rate was obtained. Nurses reported spending 27% of their time providing palliative care. Rural and urban nurses had similar roles in palliative care but rural nurses spent more time travelling and were more confident in their ability to provide palliative care. Both groups of nurses reported moderate job satisfaction and moderate satisfaction with the level of interdisciplinary collaboration in their practice. Several barriers to and facilitators of optimal palliative care provision were identified. The study results provide information about the needs of nurses that practise in these settings and may provide a basis for the development of strategies to address these needs.

Interventions for improving palliative care for older people living in nursing care homes.

Residents of nursing care homes for older people are highly likely to die there, making these places where palliative care is needed. The primary objective was to determine effectiveness of multi-component palliative care service delivery interventions for residents of care homes for older people. The secondary objective was to describe the range and quality of outcome measures. The grey literature and the following electronic databases were searched: Cochrane Central Register of Controlled Trials, Cochrane Database of Systematic Reviews, Database of Abstracts of Reviews of Effectiveness (all issue 1, 2010); MEDLINE, EMBASE, CINAHL, British Nursing Index, (1806 to February 2010), Science Citation Index Expanded & AMED (all to February 2010). Key journals were hand searched and a PubMed related articles link search was conducted on the final list of articles. We planned to include Randomised Clinical Trials (RCTs), Controlled Clinical Trials (CCTs), controlled before-and-after studies and interrupted time series studies of multi-component palliative care service delivery interventions for residents of care homes for older people. These usually include the assessment and management of physical, psychological and spiritual symptoms and advance care planning. We did not include individual components of palliative care, such as advance care planning. Two review authors independently assessed studies for inclusion, extracted data, and assessed quality and risk of bias. Meta analysis was not conducted due to heterogeneity of studies. The analysis comprised a structured narrative synthesis. Outcomes for residents and process of care measures were reported separately. Two RCTs and one controlled before-and-after study were included (735 participants). All were conducted in the USA and had several potential sources of bias. Few outcomes for residents were assessed. One study reported higher satisfaction with care and the other found lower observed discomfort in residents with end-stage dementia. Two studies reported group differences on some process measures. Both reported higher referral to hospice services in their intervention group, one found fewer hospital admissions and days in hospital in the intervention group, the other found an increase in do-not-resuscitate orders and documented advance care plan discussions. We found few studies, and all were in the USA. Although the results are potentially promising, high quality trials of palliative care service delivery interventions which assess outcomes for residents are needed, particularly outside the USA. These should focus on measuring standard outcomes, assessing cost-effectiveness, and reducing bias.

Developing nurse independent prescribing in a specialist palliative care setting

Nurse independent prescribing (NIP) has been at the centre of government policy in the UK to improve patient care. Clinical nurse specialists (CNSs) are key workers in the delivery of specialist palliative care services, and NIP enables them to improve the quality of care their patients receive. However, there are known barriers that prevent qualified NIPs from prescribing, including lack of NIP policies in organizations and difficulties in ensuring ongoing mentoring and support. This article describes how an NIP policy was developed and introduced within an independent specialist palliative care setting (hospice community team). The process undertaken by the NIP policy team is described as well as approaches to overcoming potential and actual barriers. Challenges in creating a NIP policy are explored, including such issues as managing off-label prescribing, obtaining peer support and securing insurance cover. As CNSs often work independently, it was felt important to provide mentoring following qualification by senior medical staff in order to gain confidence in their new roles in NIP. Wider influences, such as initiatives to increase care of patients in the community and 7-day working by CNSs are also considered. This article aims to support other health care providers, both in the independent and national health sectors, who plan to deliver the NIP agenda. Barriers to NIP must be addressed in order to achieve success and to ensure specialist palliative care nurses trained in NIP are able to put their extended skills into practice.

The Living Model: An Australian Model for Aboriginal Palliative Care Service Delivery with International Implications

Research in the area of palliative care service delivery to Aboriginal peoples is still in its infancy. Service providers and health policy makers around the world are calling for research-based insights to guide practice. To make a contribution to this important initiative, this article will provide an overview of an evidence-based model developed for rural and remote Aboriginal palliative care service delivery in Australia. The model has attracted considerable interest from Canadian and international audiences, and they have provided strong feedback to the authors. These audiences indicate that the model resonates with, and provides practical insights for, those interested in Aboriginal palliative care in diverse geographical locations. Thus, this overview is intended not only to provide a thorough introduction to the model for interested readers but to go some way toward affirming our common concerns as well; it also suggests possible solutions to the challenges faced by all involved in the provision of palliative care to Aboriginal people.

Visioning for secondary palliative care service hubs in rural communities: a qualitative case study from British Columbia's interior

BackgroundAs the populations of many developed nations continue to age at rapid rates it is becoming increasingly important to enhance palliative care service delivery in order to meet anticipated demand. Rural areas face a number of challenges in doing this, and thus dedicated attention must be given to determining how to best enhance service delivery in ways that are sensitive to their particular needs. The purposes of this article are to determine the vision for establishing secondary palliative care service hubs (SPCH) in rural communities through undertaking a case study, and to ascertain the criteria that need to be considered when siting such hubs.MethodsA rural region of British Columbia, Canada was selected for primary data collection, which took place over a five-month period in 2008. Formal and informal palliative care providers (n = 31) were interviewed. A purposeful recruitment strategy was used to maximize occupational and practice diversity. Interviews were conducted by phone using a semi-structured guide. Interviews were audio recorded and transcribed verbatim. Data were managed using NVivo8™ software and analyzed thematically, using investigator triangulation to strengthen interpretation.ResultsFour themes emerged from the dataset: (1) main SPCH features; (2) determining a location; (3) value-added outcomes; and (4) key considerations. It was found that participants generally supported implementing a SPCH in the rural region of focus. Several consistent messages emerged, including that: (1) SPCHs must create opportunities for two-way information exchange between specialists and generalists and communities; (2) SPCHs should diffuse information and ideas throughout the region, thus serving as a locus for education and a means of enhancing training opportunities; and (3) hubs need not be physical sites in the community (e.g., an office in a hospice or hospital), but may be virtual or take other forms based upon local needs.ConclusionVisioning innovation in the provision of palliative care service in rural communities can be enhanced by consultation with local providers. Interviews are a means of determining local concerns and priorities. There was widespread support for SPCH coupled with some uncertainty about means of implementation.

Current Funding and Financing Issues in the Australian Hospice and Palliative Care Sector

This article overviews current funding and financing issues in the Australian hospice and palliative care sector. Within Australia, the major responsibilities for managing the health care system are shared between two levels of government. Funding arrangements vary according to the type of care. The delivery of palliative care services is a State/Territory responsibility. Recently, almost all States/Territories have developed overarching frameworks to guide the development of palliative care policies, including funding and service delivery structures. Palliative care services in Australia comprise a mix of specialist providers, generalist providers, and support services in the public, nongovernment, and private sectors. The National Palliative Care Strategy is a joint strategy of the Commonwealth and States that commenced in 2002 and includes a number of major issues. Following a national study in 1996, the Australian National Subacute and Nonacute Patient (AN-SNAP) system was endorsed as the national casemix classification for subacute and nonacute care. Funding for palliative care services varies depending on the type of service and the setting in which it is provided. There is no national model for funding inpatient or community services, which is a State/Territory responsibility. A summary of funding arrangements is provided in this article. Palliative care continues to evolve at a rapid rate in Australia. Increasingly flexible evidence-based models of care delivery are emerging. This article argues that it will be critical for equally flexible funding and financing models to be developed. Furthermore, it is critical that palliative care patients can be identified, classified, and costed. Casemix classifications such as AN-SNAP represent an important starting point but further work is required.

A comparison of bereavement services provided in hospice and palliative care settings in Australia, the UK and the USA

Bereavement support services are recognised as an integral part of hospices and palliative care services. Exploratory surveys on the nature of such services have been conducted in recent years in several countries, including the USA, UK and Australia. The purpose of this paper is to compare the main findings of these surveys and to offer preliminary suggestions on how to improve this component of care both within and across these three countries. Through this comparison, a number of common aspects of service delivery were highlighted. Common difficulties were also found, including low numbers of paid staff, variations in specialist training, insufficient levels of funding, and the lack of the use of validated bereavement assessment tools. Bereavement support is an important aspect of hospice and palliative care service delivery. In all countries, further research and policy development is required to address the common difficulties.

Study Design, Precision, and Validity in Observational Studies

The use of observational research methods in the field of palliative care is vital to building the evidence base, identifying best practices, and understanding disparities in access to and delivery of palliative care services. As discussed in the introduction to this series, research in palliative care encompasses numerous areas in which the gold standard research design, the randomized controlled trial (RCT), is not appropriate, adequate, or even possible.1,2 The difficulties in conducting RCTs in palliative care include patient and family recruitment, gate-keeping by physicians, crossover contamination, high attrition rates, small sample sizes, and limited survival times. Furthermore, a number of important issues including variation in access to palliative care and disparities in the use and provision of palliative care simply cannot be answered without observational research methods. As research in palliative care broadens to encompass study designs other than the RCT, the collective understanding of the use, strengths, and limitations of observational research methods is critical. The goals of this first paper are to introduce the major types of observational study designs, discuss the issues of precision and validity, and provide practical insights into how to critically evaluate this literature in our field.

Supporting Patients and Their Caregivers After-Hours at the End of Life: The Role of Telephone Support

Twenty-four hour access is accepted as a gold standard for palliative care service delivery, yet minimal data exist to justify the cost of this initiative to health care planners and policy makers. Further, there is scant information concerning optimal and efficient methods for delivering after-hours palliative care advice and support, particularly in regional and rural settings. This article reports on an evaluation of a local after-hours telephone support service in regional Australia. A centralized after-hours telephone support service was provided by generalist nurses at a Multipurpose Service in a rural community. A mixed-method evaluation, including semistructured interviews, was undertaken after 20 months of operation. During the period March 31, 2005 until November 15, 2006, 357 patients were registered as part of the Mid North Coast Rural Palliative Care Program. Ten percent of patients or their caregivers accessed the After-Hours Telephone Support Service, representing 55 occasions of service. The most common reason for contacting the service was for reassurance surrounding medication usage, symptom management, and anxiety. This experience demonstrates proof of concept that acceptable palliative care advice can be provided by generalist nurses in a cost-efficient manner. Common patterns emerged in utilization that can assist in service planning and staffing formulae. There is also a need to investigate mechanisms of interfacing with larger scale call centers, to explore the differences within generic and disease-specific approaches, and assess the appropriateness of after-hours telephone support with different cultural groups.

Collaboration in primary care: the need to see the bigger picture

The mantras of collaboration, teamwork, interdisciplinary learning, and education have been urged on primary healthcare teams for a very long time. In the UK, Spencer1 suggests that this advocacy goes back to the Dawson Report of 1920,2 but observes: ‘Nevertheless, although the PHCT [primary healthcare team] is widely advocated as the best means for delivering health care in the community, there are problems in realising this ambition.’ 1 Two papers in this issue illustrate the continuing nature of these teamwork problems.3,4 The papers are concerned with the delivery of palliative care services, but the issues they expose are those associated with interdisciplinary teamwork rather than being uniquely related to palliative care. It is accepted that to provide high quality preventive, curative, or rehabilitation care necessitates input from a range of healthcare and other practitioners. To provide such care requires effective communication between all contributors to the care of the individual or community. The basis effective overall communication starts from good communication within a profession. Effective communication then needs to extend to members of other professions and disciplines who form the immediate working team and, subsequently, to members of other teams or organisations. Communication is fundamental to effective teamworking. Focusing on primary care, we know that teamwork can be enhanced by: co-location; facilitated practice-based education; interprofessional learning; shared record systems; shared goals, plans, and activities; and possibly through shared management systems and remuneration.5–10 Fundamental to these approaches to the development of teamwork in primary health care is the idea that education, the organisation of services, and access to resources all need to be utilised to help facilitate and stimulate teamworking. Various approaches to education of practitioners in primary care have been used to develop teamwork. Thomas and colleagues in Liverpool in the 1980s …

Palliative care provision for people with intellectual disabilities: a questionnaire survey of specialist palliative care professionals

There is a growing interest in the palliative care needs of people with intellectual disabilities (ID). There are indications that palliative care staff face particular problems providing care to this group, but empirical data about the extent of the problem are lacking. This study aims to gain insight into the current use of palliative care services by people with ID in London, to identify the prevalence and severity of problems faced by palliative care professionals and to identify strategies that will facilitate an improvement in access and delivery of palliative care services to people with ID. A postal questionnaire was developed for this study and returned by 543 professionals working in 53 specialist palliative care services in London (57% response rate). Sixty-seven percent of respondents had supported a patient with ID at some point in their palliative care career. Problems arising from the patient’s difficulty in understanding the illness and treatment were reported as the most pertinent. Other prevalent problems included difficulty around communication, assessment and patient fear. Respondents emphasised the need for collaboration with carers and other services. Link worker schemes, training and access to background information were seen as most helpful. The authors conclude that palliative care services appear to be under-used by people with ID. There is a distinct set of problems related to the provision of palliative care for people with ID. Palliative care services should assess the nature and level of their service provision for people with ID. Future research should include epidemiological studies to assess need and include people with ID as informants to evaluate the effectiveness of palliative care provision.

Revolution in end-of-life care

For several decades, nurses have been pivotal to the development and delivery of palliative care services in the UK. End-of-life care – always a central feature of palliative care – has recently come under the scrutiny of healthcare professionals, researchers and policy makers. Several factors contribute to this interest: the desire to promote patient choice, increasing healthcare costs and, importantly, concerns about the appropriateness of some interventions at the end-of-life.

Ontario, Canada: Using Networks to Integrate Palliative Care Province-Wide

Ontario, a Canadian province, identified the lack of coordination, integration, and consistency of end-of-life care services as barriers to quality palliative care. To address these barriers, various governmental, organizational, and community-level initiatives were implemented. The Ministry of Health and Long-Term Care enacted an End-of-Life Care Strategy in 2005 aimed at shifting care from acute settings to appropriate alternate settings of care; enhancing client-centered and interdisciplinary service capacity; and improving access, coordination, and consistency of services. Crucial to accomplishing the strategy was the establishment of End-of-Life Networks within health care planning regions. The networks were instrumental in developing end-of-life care service delivery models in the various regions, bringing key stakeholders together toward a common vision, and building strong collaborations across providers and settings. Cancer Care Ontario, an organization dedicated to improving cancer care at the regional and provincial levels, also leads improvements in palliative care through the implementation of a palliative strategy for cancer patients aimed at improved measurement of quality indicators, increased use of evidence and standards, and increased efficiency and access to care. A regional network of organizations in Southeastern Ontario created a quality improvement project, the Palliative Care Integration Project (PCIP), which disseminated common symptom assessment tools, collaborative care plans, and evidence-based guidelines across the continuum of care. The PCIP was embraced by key stakeholders across the province as a model intervention to better coordinate, integrate, and standardize palliative care service delivery, and is currently being spread across all regions of the province.