Promoting Excellence in End-of Life Care, a national program of The Robert Wood Johnson Foundation, funded 22 demonstration projects representing a wide range of health care settings and patient populations to develop innovative models for delivering palliative care that addressed documented deficiencies in the care of patients and families facing the final stage of life.
To determine the practicality (feasibility of development and operation as well as acceptance by stakeholders) of new models of care and to determine the impact of the models on access to, quality of and financing for palliative care.
The program cannot report scientifically rigorous outcomes, but the grant-funded projects used a variety of methods and measures to assess acceptance of new models and their impact from the perspectives of various stakeholders, including patients and their families, clinicians, administrators and payers. While it is not possible to aggregate data across projects, the data reported to the Promoting Excellence national program office were used to describe program impact with respect to the practicality of palliative care service integration into existing clinical care settings (feasibility and acceptance by stakeholders), the availability and use of palliative care services (access), quality of care (conformance to patient expectations and accepted clinical standards) and costs of care.
The 22 projects provided services in urban as well as rural settings, in integrated health systems, hospitals, outpatient clinics, cancer centers, nursing homes, renal dialysis clinics, inner city public health and safety net systems and prisons. Populations served included prison inmates, military veterans, renal dialysis patients, Native Americans, Native Alaskans, and African American patients, inner-city medically underserved patients, pediatric patients, and persons with serious mental illness patients.
Hosting or adopting institutions sustained or expanded twenty of the 22 models, and feedback from all stakeholders was positive. Project sites developed and utilized new palliative care services and addressed quality through implementation of new standards and clinical protocols. Costs of care, where they could be assessed, were unaffected or decreased for project patients versus historical or concurrent controls.
The 22 Promoting Excellence in End-of Life Care projects demonstrated that by individualizing patient and family assessment, effectively employing existing resources and aligning services with specific patient and family needs, it is possible to expand access to palliative services and improve quality of care in ways that are financially feasible and acceptable to patients, families, clinicians, administrators, and payers.
"The aforementioned studies focus on primary care and public health; while there is an abundance of literature on the sustainability in these areas, the literature does not adequately address the sustainability of PC service delivery programs. Of the few studies, the majority were not empirical, but rather descriptions of demonstration projects
, focused on the experiences of physicians eg. [36,37], or considered sustainability entirely from a financial perspective
[Show abstract][Hide abstract] ABSTRACT: This paper focuses on the sustainability of existing palliative care teams that provide home-based care in a shared care model. For the purposes of this study, following Evashwick and Ory (2003), sustainability is understood and approached as the ability to continue the program over time. Understanding factors that influence the sustainability of teams and ways to mitigate these factors is paramount to improving the longevity and quality of service delivery models of this kind.
Using qualitative data collected in interviews, the aim of this study is twofold: (1) to explore the factors that affect the sustainability of the teams at three different scales, and; (2) based on the results of this study, to propose a set of recommendations that will contribute to the sustainability of PC teams.
Sustainability was conceptualized from two angles: internal and external. An overview of external sustainability was provided and the merging of data from all participant groups showed that the sustainability of teams was largely dependent on actors and organizations at the local (community), regional (Local Health Integration Network or LHIN) and provincial scales. The three scales are not self-contained or singular entities but rather are connected. Integration and collaboration within and between scales is necessary, as community capacity will inevitably reach its threshold without support of the province, which provides funding to the LHIN. While the community continues to advocate for the teams, in the long-term, they will need additional supports from the LHIN and province. The province has the authority and capacity to engrain its support for teams through a formal strategy. The recommendations are presented based on scale and in priority order to better illustrate how actors and organizations could move forward.
This study may inform program and policy specific to strategic ways to improve the provision of team-based palliative home care using a shared care model, while simultaneously providing direction for team-based program delivery and sustainability for other jurisdictions.
BMC Palliative Care 08/2013; 12(1):32. DOI:10.1186/1472-684X-12-32 · 1.78 Impact Factor
"Health reform and further research are required to ensure the provision of supportive palliative care which is responsive to the needs of patients with end-stage COPD and their families. Two health reform programmes based around the mixed management model are the 'Promoting Excellence in End-of-life Care' from the United States of America (Byock et al., 2006), and the 'End-of-life Programme' in the United Kingdom (National Health Service, 2006). The 'Promoting Excellence in End-of-life Care' program has focused on the implementation of quality palliative care to individuals with non-malignant diagnoses with a focus on case management and home-based palliation. "
[Show abstract][Hide abstract] ABSTRACT: BACKGROUND: End-stage chronic obstructive pulmonary disease (COPD) is a debilitating, life-limiting condition. A palliative approach is appropriate for individuals with end-stage COPD, yet currently few interventions embrace this holistic, multidisciplinary and inclusive perspective. OBJECTIVE: To describe interventions to support a palliative care approach in patients with end-stage COPD. DESIGN: Integrative review. DATA SOURCES AND REVIEW METHOD: Peer reviewed articles meeting the search criteria were accessed from Medline, PsychINFO, CINAHL and Google Scholar databases as well as Caresearch online resource. The domains of quality palliative care developed by Steinhauser were used as the conceptual framework to synthesise information. RESULTS: This review has shown that a range of palliative interventions are used to address the needs of individuals with end-stage COPD. Although evidence exists for discrete elements of palliative management in this patient group, there is limited evidence for health service coordination and models that integrate the multiple domains of palliative care with active management. CONCLUSION: Further investigation is required to address the complex personal, provider and system elements associated with managing end-stage COPD. A comprehensive and collaborative approach is required to address the complex and varied needs of individuals with end-stage COPD and their families.
International journal of nursing studies 03/2012; 49(11). DOI:10.1016/j.ijnurstu.2012.02.004 · 2.90 Impact Factor
"The approach was essentially a " both –and " (as opposed to " either–or " ) model in which there would be a smooth transition from mostly anticancer treatment to mostly palliative care (Byock, 2000). Models with some similar features have been called integrated (Temel et al., 2007), concurrent, or simultaneous care (Meyers & Linder, 2003; Pitorak et al., 2003; Byock et al., 2006). "
[Show abstract][Hide abstract] ABSTRACT: There is a paucity of randomized controlled trials (RCTs) to evaluate models of palliative care. Although interventions vary, all have faced a variety of methodological challenges including adequate recruitment, missing data, and contamination of the control group. We describe the ENABLE II intervention, methods, and sample baseline characteristics to increase intervention and methodological transparency, and to describe our solutions to selected methodological issues.
Half of the participants recruited from our rural U.S. comprehensive cancer center and affiliated clinics were randomly assigned to a phone-based, nurse-led educational, care coordination palliative care intervention model. Intervention services were provided to half of the participants weekly for the first month and then monthly until death, including bereavement follow-up call to the caregiver. The other half of the participants were assigned to care as usual. Symptoms, quality of life, mood, and functional status were assessed every 3 months until death.
Baseline data of 279 participants were similar to normative samples. Solutions to methodological challenges of recruitment, missing data, and "usual care" control group contamination are described.
It is feasible to overcome many of the methodological challenges to conducting a rigorous palliative care RCT.
Palliative and Supportive Care 04/2009; 7(1):75-86. DOI:10.1017/S1478951509000108 · 0.98 Impact Factor
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