Development and Management of Networks of Care at the End of Life (the REDCUIDA Intervention): Protocol for a Nonrandomized Controlled Trial

Background: End-of-life needs can be only partly met by formalized health and palliative care resources. This creates the opportunity for the social support network of family and community to play a crucial role in this stage of life. Compassionate communities can be the missing piece to a complete care model at the end of life. Objective: The main objective of this study is to evaluate the REDCUIDA (Redes de Cuidados or Network of Care) intervention for the development and management of networks of care around people with advanced disease or at the end of life. Methods: The study is a 2-year nonrandomized controlled trial using 2 parallel groups. For the intervention group, we will combine palliative care treatment with a community promoter intervention, compared with a control group without intervention. Participants will be patients under a community palliative care team’s supervision with and without intervention. The community promotor will deliver the intervention in 7 sessions at 2 levels: the patient and family level will identify unmet needs, and the community level will activate resources to develop social networks to satisfy patient and family needs. A sample size of 320 patients per group per 100,000 inhabitants will offer adequate information and will give the study 80% power to detect a 20% increase in unmet needs, decrease families’ burden, improve families’ satisfaction, and decrease the use of health system resources, the primary end point. Results will be based on patients’ baseline and final analysis (after 7 weeks of the intervention). We will carry out descriptive analyses of variables related to patients’ needs and of people involved in the social network. We will analyze pre- and postintervention data for each group, including measures of central tendency, confidence intervals for the 95% average, contingency tables, and a linear regression. For continuous variables, we will use Student t test to compare independent samples with normal distribution and Mann-Whitney U test for nonnormal distributions. For discrete variables, we will use Mann-Whitney U test. For dichotomous variables we will use Pearson chi-square test. All tests will be carried out with a significance level alpha=.05. Results: Ethical approval for this study was given by the Clinical Research Committee of Andalusian Health Service, Spain (CI 1020-N-17), in June 2018. The community promoter has been identified, received an expert community-based palliative care course, and will start making contacts in the community and the palliative care teams involved in the research project. Conclusions: The results of this study will provide evidence of the benefit of the REDCUIDA protocol on the development and assessment of networks of compassionate communities at the end of life. It will provide information about clinical and emotional improvements, satisfaction, proxy burden, and health care resource consumption regarding patients in palliative care

Evidence-based planning and costing palliative care services for children : novel multi-method epidemiological and economic exemplar

Background: Children’s palliative care is a relatively new clinical specialty. Its nature is multi-dimensional and its delivery necessarily multi-professional. Numerous diverse public and not-for-profit organisations typically provide services and support. Because services are not centrally coordinated, they are provided in a manner that is inconsistent and incoherent. Since the first children’s hospice opened in 1982, the epidemiology of life-limiting conditions has changed with more children living longer, and many requiring transfer to adult services. Very little is known about the number of children living within any given geographical locality, costs of care, or experiences of children with ongoing palliative care needs and their families. We integrated evidence, and undertook and used novel methodological epidemiological work to develop the first evidence-based and costed commissioning exemplar. Methods: Multi-method epidemiological and economic exemplar from a health and not-for-profit organisation perspective, to estimate numbers of children under 19 years with life-limiting conditions, cost current services, determine child/parent care preferences, and cost choice of end-of-life care at home. Results: The exemplar locality (North Wales) had important gaps in service provision and the clinical network. The estimated annual total cost of current children’s palliative care was about £5.5 million; average annual care cost per child was £22,771 using 2007 prevalence estimates and £2,437- £11,045 using new 2012/13 population-based prevalence estimates. Using population-based prevalence, we estimate 2271 children with a life-limiting condition in the general exemplar population and around 501 children per year with ongoing palliative care needs in contact with hospital services. Around 24 children with a wide range of life-limiting conditions require end-of-life care per year. Choice of end-of-life care at home was requested, which is not currently universally available. We estimated a minimum (based on 1 week of end-of-life care) additional cost of £336,000 per year to provide end-of-life support at home. Were end-of-life care to span 4 weeks, the total annual additional costs increases to £536,500 (2010/11 prices). Conclusions: Findings make a significant contribution to population-based needs assessment and commissioning methodology in children’s palliative care. Further work is needed to determine with greater precision which children in the total population require access to services and when. Half of children who died 2002-7 did not have conditions that met the globally used children's palliative care condition categories, which need revision in light of findings

Rapid spread of complex change: a case study in inpatient palliative care

<p>Abstract</p> <p>Background</p> <p>Based on positive findings from a randomized controlled trial, Kaiser Permanente's national executive leadership group set an expectation that all Kaiser Permanente and partner hospitals would implement a consultative model of interdisciplinary, inpatient-based palliative care (IPC). Within one year, the number of IPC consultations program-wide increased almost tenfold from baseline, and the number of teams nearly doubled. We report here results from a qualitative evaluation of the IPC initiative after a year of implementation; our purpose was to understand factors supporting or impeding the rapid and consistent spread of a complex program.</p> <p>Methods</p> <p>Quality improvement study using a case study design and qualitative analysis of in-depth semi-structured interviews with 36 national, regional, and local leaders.</p> <p>Results</p> <p>Compelling evidence of impacts on patient satisfaction and quality of care generated 'pull' among adopters, expressed as a remarkably high degree of conviction about the value of the model. Broad leadership agreement gave rise to sponsorship and support that permeated the organization. A robust social network promoted knowledge exchange and built on an existing network with a strong interest in palliative care. Resource constraints, pre-existing programs of a different model, and ambiguous accountability for implementation impeded spread.</p> <p>Conclusions</p> <p>A complex, hospital-based, interdisciplinary intervention in a large health care organization spread rapidly due to a synergy between organizational 'push' strategies and grassroots-level pull. The combination of push and pull may be especially important when the organizational context or the practice to be spread is complex.</p

Crossing Organizational Boundaries in Palliative Care: The Promise and Reality of Community Partnerships

This report presents the first of a series of findings from the Community-Oriented Palliative Care Initiative (COPCI), an innovative program testing new approaches to caring for individuals with progressive, life threatening illness. Developed and supported by the United Hospital Fund, the project was designed to initiate collaborations among health care and social service organizations, with the goal of reaching seriously ill individuals and their caregivers earlier in the course of illness and providing a broad range of coordinated services. Six such networks of diverse partners received a total of $2.1 million in grants over the two-year period from mid-2000 into 2002.The urgency to provide alternatives to current standard practice is underscored by the number of individuals affected: in New York City alone, in the year 2000, some 46,000 people died of diseases typically marked by a lengthy course from diagnosis to death. While many could have benefited from appropriate and timely palliative care services, most did not receive them.The Fund reasoned that networks including not only hospitals and hospices but also social services agencies and other community resources could collectively respond, earlier and more fully, to the complex combination of medical, social, psychological, and spiritual needs that typify the months and years leading to death. Local expertise and resources should determine the structure of each network, the partners involved, and the specific model for service delivery. Drawing on the experiences of the six pioneering projects, this report focuses on the challenges of creating such new networks

Is individual educational level related to end-of-life care use? : results from a nationwide retrospective cohort study in Belgium

Background: Educational level has repeatedly been identified as an important determinant of access to health care, but little is known about its influence on end-of-life care use. Objectives: To examine the relationship between individual educational attainment and end-of-life care use and to assess the importance of individual educational attainment in explaining differential end-of-life care use. Research Design: A retrospective cohort study via a nationwide sentinel network of general practitioners (GPs; SENTI-MELC Study) provided data on end-of-life care utilization. Multilevel analysis was used to model the association between educational level and health care use, adjusting for individual and contextual confounders based upon Andersen's behavioral model of health services use. Subjects: A Belgian nationwide representative sample of people who died not suddenly in 2005-2007. Results: In comparison to their less educated counterparts, higher educated people equally often had a palliative treatment goal but more often used multidisciplinary palliative care services (odds ratios [OR] for lower secondary education 1.28 [1.04-1.59] and for higher [secondary] education: 1.31 [1.02-1.68]), moved between care settings more frequently (OR: 1.68 [1.13-2.48] for lower secondary education and 1.51 [0.93-2.48] for higher [secondary] education) and had more contacts with the GP in the final 3 months of life. Conclusions: Less well-educated people appear to be disadvantaged in terms of access to specialist palliative care services, and GP contacts at the end of life, suggesting a need for empowerment of less well-educated terminally ill people regarding specialist palliative and general end-of-life care use

The place of volunteering in palliative care

This chapter discusses the place and development of volunteering in palliative care in the context of hospice service provision in the UK. It draws on recent qualitative research undertaken in a large hospice in England. The research explored a range of issues connected to the process and experience of voluntary work in this setting including who volunteers, what roles volunteers take up, how they are trained and supported and the ways in which role boundaries are established and maintained. The research revealed that hospice volunteering is rewarding but often emotionally challenging and is now highly routinised and closely monitored in ways paralleling practices in the paid labour market. Although volunteers freely give their time to the work of hospice, their activities are subject to significant management prescription, with hospices increasingly adopting sophisticated business models to underpin their operation and, in many cases, their expansion (Watts, 2010)

An evaluation of professional networks, co-ordination, cooperation and collaboration in the West Midlands Paediatric Palliative Care Network

Introduction: This is a report on Strand 3 of the Big Study, which studied the West Midlands Paediatric Palliative Care Network. The Big Study was funded by The Big Lottery Fund and Strand 3 of the Big Study was researched by the Centre for Nursing and Healthcare Research in the School of Health and Social Care at the University of Greenwich. 1.1 Background: The West Midlands Paediatric Palliative Care Network began as an interest group which started in the year 2000, with 6 to 10 members and grew. At one stage it was allied to the Birmingham Cancer Network and funded by the NHS Strategic Health Authority and at this stage it became more representative of services and West Midlands geography. It has existed in its current format, as a voluntary clinical network to promote paediatric palliative care and share best practice since 2009. The membership is wide and inclusive which means 30 to 40 people may attend the meetings which are held on a bimonthly basis and are hosted and supported charitably. Subgroups are now used to manage work in specific areas e.g. transition or clinical standards. There are links to other related networks with reciprocal membership and informal links to NHS commissioners who may seek advice. 1.2 Scope: This strand of the Big Study focused on the West Midlands Paediatric Palliative Care Network. The geographical area of the West Midlands Paediatric Palliative Care Network includes Birmingham, Coventry, The Black Country, Herefordshire, Shropshire, Solihull, Staffordshire, Stoke-on-Trent, Telford and Wrekin, Warwickshire and Worcestershire. All members of the WMPCCN and the organisations they represent were included in the study. Both NHS and non-NHS organisations offering clinical services to any children requiring palliative care were represented. Excluded from this study was the detailed examination of any of the other networks, e.g. children’s speciality networks or networks covering smaller geographical areas, to which members belonged. 1.3 Report: This report will present the results of an analysis of the responses to an online questionnaire and Social Network data from semi structured telephone interviews. This data was collected during the period February to June 2012. The approach included analysing the online survey data in order to understand the benefits and constraints of the network for individual members and Social Network Analysis of data derived from telephone interviews to explore the flow of knowledge, communication and information within the network. This report will consist of 3 different sections, with Section 1 focusing on children’s palliative care policy, the development of clinical networks and social network analysis concepts. Section 2 will focus on the research design and methods. Section 3 presents the results of the study and the final section provides a summary and conclusions of the analysis

Business models in health care: Accounting for the sustainability of palliative and end of life care provision by voluntary hospices' in England

This study evaluates the sustainability of palliative and end of life care provision by voluntary hospices in England. Using a mixed methods, inductive approach, we construct a ‘descriptive business model’ for hospices which is grounded in analysis of relevant accounting information, and supported by narratives extracted from interviews with senior clinical and non clinical managers from four large and medium sized hospices. The study reveals the strengths and weaknesses of the hospice business model and evaluates its robustness against forthcoming challenges. Our findings highlight the gradual transition from a basic voluntary sector business model to a complex, highly sophisticated, and institutionalized care establishment, sharing many of the characteristics found in large private and public organizations. The sustainability however of the business model is threatened due to its exposure to a number of contradictory forces. Whilst demand for palliative and end of life care going forward is set to increase, due to both demographic and regulatory factors, hospices' voluntary income is highly volatile. Dependency on sustaining a complex network of stakeholder groups to underwrite income, challenges the hospice business model’s ability to cope with the anticipated challenges

Can consumer research panels form an effective part of the cancer research community?

The North Trent Cancer Research Network’s Consumer Research Panel (NTCRN CRP) was established in December 2001 by the Academic Unit of Supportive Care at the University of Sheffield. In three years, the CRP has succeeded in nurturing a climate of sustainable consumer involvement within the NTCRN and this has become embedded in the culture of the network. Furthermore, the panel have championed a sustainable development of consumer involvement in health and social care research by testing new ground and forging a new way of working between health professionals and patients and carers. The CRP model has been held up as an example to other cancer networks, with new panels being set up around the country to emulate its success. This paper describes the Sheffield model of patient and public involvement and using the eight key principles of successful consumer involvement in research, identified in a recent paper by Telford et al (2003), provides a useful framework for analysing the work of the Panel. This demonstrates how consumers and professionals can inform each other to work constructively and synergistically to achieve impressive research results. The need for measurable outcomes to assess the impact and effect of consumer involvement is finally explored

Planning ahead with children with life-limiting conditions and their families : development, implementation and evaluation of ‘My Choices’

Background: The United Kingdom has led the world in the development of children’s palliative care. Over the past two decades, the illness trajectories of children with life-limiting conditions have extended with new treatments and better home-based care. Future planning is a critically under-researched aspect of children’s palliative care globally. This paper describes the development, implementation and evaluation of innovative child and parent-held palliative care planning resources. The resources were designed to facilitate parent and child thinking and engagement in future planning, and to determine care preferences and preferred locations of care for children with life-limiting conditions from diagnosis onwards. These resources fill a significant gap in palliative care planning before the end-of-life phase. Methods: Drawing on contemporaneous research on producing evidence-based children’s health information, we collaborated with leading children’s not-for-profit organisations, parents, children, and professionals. A set of resources (My Choices booklets) were developed for parents and children and evaluated using interviews (parents, children, professionals) and questionnaires (professionals) and an open web-based consultation. Results: Parents and children responded in three ways: Some used the booklets to produce detailed written plans with clear outcomes and ideas about how best to achieve desired outcomes. Others preferred to use the booklet to help them think about potential options. Remaining parents found it difficult to think about the future and felt there was no point because they perceived there to be no suitable local services. Professionals varied in confidence in their ability to engage with families to plan ahead and identified many challenges that prevented them from doing so. Few families shared their plans with professionals. Parents and children have far stronger preferences for home-care than professionals. Conclusion: The My Choices booklets were revised in light of findings, have been endorsed by Together for Short Lives, and are free to download in English and Welsh for use by parents and young people globally. More work needs to be done to support families who are not yet receptive to planning ahead. Professionals would benefit from more training in person-centred approaches to future planning and additional communications skills to increase confidence and ability to engage with families to deliver sensitive palliative care planning