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1.  A self-evaluation tool for integrated care services: the Development Model for Integrated Care applied in practice 
The purpose of the workshop is to show the applications of the Development Model for Integrated Care (DMIC) in practice. This relatively new and validated model, can be used by integrated care practices to evaluate their integrated care, to assess their phase of development and reveal improvement areas. In the workshop the results of the use of the model in three types of integrated care settings in the Netherlands will be presented. Participants are offered practical instruments based on the validated DMIC to use in their own setting and will be introduced to the webbased tool.
To integrate care from multiple providers into a coherent and streamlined client-focused service, a large number of activities and agreements have to be implemented like streamlining information flows and adequate transfers of clients. In the large range of possible activities it is often not clear what essential activities are and where to start or continue. Also, knowledge about how to further develop integrated care services is needed. The Development Model for Integrated Care (DMIC), based on PhD research of Mirella Minkman, describes nine clusters containing in total 89 elements that contribute to the integration of care. The clusters are named: ‘client-centeredness’, ‘delivery system’, ‘performance management’, ‘quality of care’, ‘result-focused learning’, ‘interprofessional teamwork’, ‘roles and tasks’, ‘commitment’, and ‘transparant entrepreneurship’ [1–3]. In 2011 a new digital webbased self-evolution tool which contains the 89 elements grouped in nine clusters was developed. The DMIC also describes four phases of development [4]. The model is empirically validated in practice by assessing the relevance and implementation of the elements and development phases in 84 integrated care services in The Netherlands: in stroke, acute myocardial infarct (AMI), and dementia services. The validation studies are recently published [5, 6]. In 2011 also other integrated care services started using the model [7]. Vilans developed a digital web-based self-evaluation tool for integrated care services based on the DMIC. A palliative care network, four diabetes services, a youth care service and a network for autism used the self-evaluation tool to evaluate the development of their integrated care service. Because of its generic character, the model and tool are believed to be also interesting internationally.
Data sources
In the workshop we will present the results of three studies in integrated diabetes, youth and palliative care. The three projects consist of multiple steps, see below. Workshop participants could also work with the DMIC following these steps.
One: Preparation of the digital self-evolution tool for integrated care services
Although they are very different, the three integrated care services all wanted to gain insight in their development and improvement opportunities. We tailored the digital self-evaluation tool for each specific integrated care services, but for all the basis was the DMIC. Personal accounts for the digital DMIC self-evalution survey were sent to multiple partners working in each integrated care service (4–16 partners).
Two: Use of the online self-evaluation tool each partner of the local integrated care setting evaluated the integrated care by filling in the web-based questionnaire. The tool consists of three parts (A-C) named: general information about the integrated care practice (A); the clusters and elements of the DMIC (B); and the four phases of development (C). The respondents rated the relevance and presence of each element in their integrated care practice. Respondents were asked to estimate in which phase of development their thought their service was.
Three: Analysing the results
Advisers from Vilans, the Centre of excellence for long-term care in the Netherlands, analysed the self-evolution results in cooperation with the integrated care coordinators. The results show the total amount of implemented integrated care elements per cluster in spider graphs and the development phase as calculated by the DMIC model. Suggestions for further development of the integrated care services were analysed and reported.
Four: Discussing the implications for further development
In a workshop with the local integrated care partners the results of the self-evaluation were presented and discussed. We noticed remarkable results and highlight elements for further development. In addition, we gave advice for further development appropriate to the development phase of the integrated care service. Furthermore, the professionals prioritized the elements and decided which elements to start working on. This resulted in a (quality improvement) plan for the further development of the integrated care service.
Five: Reporting results
In a report all the results of the survey (including consensus scores) and the workshops came together. The integrated care coordinators stated that the reports really helped them to assess their improvement strategy. Also, there was insight in the development phase of their service which gave tools for further development.
Case description
The three cases presented are a palliative network, an integrated diabetes services and an integrated care network for youth in the Netherlands. The palliative care network wanted to reflect on their current development, to build a guiding framework for further development of the network. About sixteen professionals within the network worked with the digital self-evaluation tool and the DMIC: home care organisations, welfare organizations, hospice centres, health care organisations, community organizations.
For diabetes care, a Dutch health care insurance company wished to gain insight in the development of the contracted integrated care services to stimulate further development of the services. Professionals of three diabetes integrated care services were invited to fill in the digital self-evaluation tool. Of each integrated care service professionals like a general practitioner, a diabetes nurse, a medical specialist, a dietician and a podiatrist were invited. In youth care, a local health organisation wondered whether the DMIC could be helpful to visualize the results of youth integrated care services at process- and organisational level. The goal of the project was to define indicators at a process- and organisational level for youth care services based on the DMIC. In the future, these indicators might be used to evaluate youth care integrated care services and improve the quality of youth care within the Netherlands.
Conclusions and discussion
It is important for the quality of integrated care services that the involved coordinators, managers and professionals are aware of the development process of the integrated care service and that they focus on elements which can further develop and improve their integrated care. However, we noticed that integrated care services in the Netherlands experience difficulties in developing their integrated care service. It is often not clear what essential activities are to work on and how to further develop the integrated care service. A guiding framework for the development of integrated care was missing. The DMIC model has been developed for that reason and offers a useful tool for assessment, self-evaluation or improvement of integrated care services in practice. The model has been validated for AMI, dementia and stroke services. The latest new studies in diabetes, palliative care and youth care gave further insight in the generic character of the DMIC. Based on these studies it can be assumed that the DMIC can be used for multiple types of integrated care services. The model is assumed to be interesting for an international audience. Improving integrated care is a complex topic in a large number of countries; the DMIC is also based on the international literature. Dutch integrated care coordinators stated that the DMIC helped them to assess their integrated care development in practice and supported them in obtaining ideas for expanding and improving their integrated care activities.
The web-based self-evaluation tool focuses on a process- and organisational level of integrated care. Also, the self assessed development phase can be compared to the development phase as calculated by the DMIC tool. The cases showed this is fruitful input for discussions. When using the tool, the results can also be used in quality policy reports and improvement plans. The web-based tool is being tested at this moment in practice, but in San Marino we can present the latest webversion and demonstrate with a short video how to use the tool and model. During practical exercises in the workshop the participants will experience how the application of the DMIC can work for them in practice or in research. For integrated care researchers and policy makers, the DMIC questionnaire and tool is a promising method for further research and policy plans in integrated care.
PMCID: PMC3617779
development model for integrated care; development of integrated care services; implementation and improvement of integrated care; self evaluation
2.  Hospice Care: What Services Do Patients and Their Families Receive? 
Health Services Research  2007;42(4):1672-1690.
To determine the degree to which patients and families enrolled with hospice received services across key categories of palliative care, the extent of hospice-level variability in services delivered, and changes over time in services delivered.
Data Source
Nationally representative sample of 9,409 discharged patients from 2,066 hospices in the National Home and Hospice Care Survey.
Study Design
Observational, cross-sectional study conducted from 1992 to 2000. The primary outcome is the receipt of services across five key categories of palliative care: nursing care, physician care, medication management, psychosocial care, and caregiver support.
Data Collection
Data were obtained via interview with the hospice staff member most familiar with the patient's care, in conjunction with medical record review.
Principle Findings
In 2000, 22 percent of patients enrolled with hospice received services across five key categories of palliative care. There was marked variation across hospices in service delivery. One-third of hospices provided patients and families services in one or two of the five key categories of palliative care, whereas 14 percent of hospices provided services across five key categories of palliative care. In multivariable analysis, the odds of receiving any additional hospice service was significantly greater in later compared with earlier years (odds ratio = 1.10, 95 percent confidence interval 1.01–1.20). Nevertheless, the percentages of patients in 2000 receiving medication management (59 percent), respite care (7 percent), and physician services (30 percent) remained low.
Hospice care for patients and families varies substantially across hospices. Whereas some hospices provide services across the key categories of palliative care, other hospices do not provide this breadth of services. Greater understanding of the causes of variation in service delivery as well as its impact on patient and family outcomes and satisfaction with end-of-life care is a critical subject for future research. Changes in Medicare's reimbursement policies may help hospices increase the range of services provided to patients and families.
PMCID: PMC1955268  PMID: 17610443
Hospice; palliative care; Medicare Hospice Benefit
3.  Changing Patterns in Place of Cancer Death in England: A Population-Based Study 
PLoS Medicine  2013;10(3):e1001410.
Wei Gao and colleagues describe how location of death has changed for patients with cancer in England between 1993 and 2010.
Most patients with cancer prefer to die at home or in a hospice, but hospitals remain the most common place of death (PoD).This study aims to explore the changing time trends of PoD and the associated factors, which are essential for end-of-life care improvement.
Methods and Findings
The study analysed all cancer deaths in England collected by the Office for National Statistics during 1993–2010 (n = 2,281,223). Time trends of age- and gender-standardised proportion of deaths in individual PoDs were evaluated using weighted piecewise linear regression. Variables associated with PoD (home or hospice versus hospital) were determined using proportion ratio (PR) derived from the log-binomial regression, adjusting for clustering effects. Hospital remained the most common PoD throughout the study period (48.0%; 95% CI 47.9%–48.0%), followed by home (24.5%; 95% CI 24.4%–24.5%), and hospice (16.4%; 95% CI 16.3%–16.4%). Home and hospice deaths increased since 2005 (0.87%; 95% CI 0.74%–0.99%/year, 0.24%; 95% CI 0.17%–0.32%/year, respectively, p<0.001), while hospital deaths declined (−1.20%; 95% CI −1.41 to −0.99/year, p<0.001). Patients who died from haematological cancer (PRs 0.46–0.52), who were single, widowed, or divorced (PRs 0.75–0.88), and aged over 75 (PRs 0.81–0.84 for 75–84; 0.66–0.72 for 85+) were less likely to die in home or hospice (p<0.001; reference groups: colorectal cancer, married, age 25–54). There was little improvement in patients with lung cancer of dying in home or hospice (PRs 0.87–0.88). Marital status became the second most important factor associated with PoD, after cancer type. Patients from less deprived areas (higher quintile of the deprivation index) were more likely to die at home or in a hospice than those from more deprived areas (lower quintile of the deprivation index; PRs 1.02–1.12). The analysis is limited by a lack of data on individual patients' preferences for PoD or a clinical indication of the most appropriate PoD.
More efforts are needed to reduce hospital deaths. Health care facilities should be improved and enhanced to support the increased home and hospice deaths. People who are single, widowed, or divorced should be a focus for end-of-life care improvement, along with known at risk groups such as haematological cancer, lung cancer, older age, and deprivation.
Please see later in the article for the Editors' Summary
Editors' Summary
Death is the only certain event in our lives. Consequently, end-of-life care is an issue that is relevant to everyone, and everyone hopes for a “good death” (a death that is free from avoidable distress and suffering) for themselves and for their loved ones. Many factors contribute to a good death, including the place of death. When asked, most people say they would rather die at home or in a hospice (a care facility that gives supportive care to people in the final phase of a terminal illness and that focuses on comfort and quality of life rather than on cure) than in a hospital. Importantly, patients who die at home or in a hospice often have a better quality of life than those who die in hospital, and caring for terminally ill patients in the community is less expensive than caring for them in hospital.
Why Was This Study Done?
Many countries have introduced end-of-life care policies that are designed to enable more people to die at home or in hospices. England, for example, implemented its National End of Life Care Programme in 2004. However, to improve end-of-life care services and to enable more people to die in their preferred place, we need to understand how the patterns of place of death and the factors that affect the place of death are changing over time. In this population-based study, the researchers examine the changing pattern of place of death of people with cancer and the factors associated with place of death in England between 1993 and 2010. Cancer is a leading cause of death globally and is responsible for 8 million deaths annually. Deaths from cancer still occur most commonly in hospitals, which are the least preferred place of death for people with cancer; home and hospices are the first and second preferred places of death, respectively, for such people.
What Did the Researchers Do and Find?
The researchers used death registration data collected by the Office of National Statistics to identify all the adult cancer deaths in England between 1993 and 2010 (2.28 million deaths) and to determine where these deaths occurred, time trends in place of death, and the factors associated with place of death. Hospital was the commonest place of death throughout the study period—48% of cancer deaths occurred in hospital, 24.5% at home, and 16.4% in hospices. The proportion of home deaths increased after 2005 whereas the proportion of hospital deaths declined. The proportion of deaths in hospices also increased over the study period. The most important factor associated with place of death was cancer site. For example, patients who died from a blood (hematological) cancer were more likely to die in hospital than patients with colorectal cancer throughout the study period although the proportion dying at home or in a hospice increased over time. Being single, widowed, or divorced was associated with a higher likelihood of dying in hospital than being married. Being over 75 was associated with a higher likelihood of dying in hospital than being 25–54 although elderly people were more likely to die at home or in a hospice after 2006 than in earlier periods.
What Do These Findings Mean?
These findings show that the hospital is still the commonest place of death for patients with cancer in England. However, the increase in home and hospice deaths since 2005 suggests that the National End of Life Care Programme has enabled more people to die at their preferred place of death. These findings identify cancer site, marital status, and age as the three most important factors associated with place of death for patients with cancer. Because the study is a large-scale, population-based study, these findings are likely to be generalizable to other high-income settings. However, because the study did not include data on individual patient preferences for place of death, these findings should be applied with care to individual patients. Importantly, these findings indicate that more needs to be done to support people with cancer (and other terminal illnesses) who wish to die at home or in a hospice. Moreover, they identify groups of people—single, widowed or divorced individuals, older people, and people with specific types of cancer—who need extra help to ensure that they are able to choose where they die.
Additional Information
Please access these Web sites via the online version of this summary at
The Cicely Saunders International, a not-for-profit organization, promotes research to improve the care and treatment of all patients with terminal illnesses at home, in hospices and in hospital; its website includes information on end-of-life care and on Cicely Saunders, the founder of the hospice movement in England
This study is part of GUIDE_Care, a project initiated by the Cicely Saunders Institute to investigate patterns in place of death and the factors that affect these patterns
Information on the National End of Life Care Programme is available
The UK National Health Service Choices website provides information (including videos of personal experiences) on end-of-life issues for carers, information on end-of-life care for patients with cancer, and an end-of-life care guide for people approaching the end of their life
The US National Cancer Institute has a fact sheet on end-of-life care for people who have cancer and provides information on hospice care and home care for patients with cancer (in English and Spanish)
The not-for-profit organization HealthTalkOnline provides personal stories about living with dying
The NHS National End of Life Intelligence Network (NEoLCIN) provides information on broad issues about end-of-life care
The South West Public Health Observatory (SWPHO) aims to improve the health of the population through producing evidence to inform decision making on health issues at local, regional, and national levels. SWPHO also produces specific end-of-life care resources (e.g., specialised reports, end-of-life care profiles) and disseminates it via the NEoLCIN website
PMCID: PMC3608543  PMID: 23555201
4.  Hospice Providers’ Key Approaches to Support Informal Caregivers in Managing Medications for Patients in Private Residences 
Managing and administering medications to relieve pain and symptoms are common, important responsibilities for informal caregivers of patients receiving end-of-life care at home. However, little is known about how hospice providers prepare and support caregivers with medication-related tasks.
This qualitative study explores the key approaches that hospice providers employ to facilitate medication management for caregivers.
Semi-structured, open-ended interviews were conducted with 22 providers (14 nurses, four physicians, and four social workers) from four hospice organizations around an urban setting in the Midwest U.S.
Based on the interviews, the following five key approaches emerged, constituting how the hospice team collectively helped caregivers manage medications: 1) establishing trust; 2) providing information; 3) promoting self-confidence; 4) offering relief (e.g., provided in-home medication assistance, mobilized supportive resources, and simplified prescriptions); and 5) assessing understanding and performance. Each hospice discipline employed multiple approaches. Nurses emphasized tailoring information to individual caregivers and patients, providing in-home assistance to help relieve caregivers, and assessing caregivers’ understanding and performance of medication management during home visits. Physicians simplified medication prescriptions to alleviate burden and reassured caregivers using their perceived medical authority. Social workers facilitated medication management by providing emotional support to promote self-confidence and mobilizing resources in caregivers’ support networks and the community at large.
Hospice nurses, physicians, and social workers identified distinct, yet overlapping, approaches in aiding caregivers with medication management. These findings emphasize the importance of teamwork among hospice providers. Future research should investigate how common, standardized, effective and efficient these approaches are in practice.
PMCID: PMC3367257  PMID: 22651949
Hospice home services; family caregivers; pain management
5.  Hospice Use Among Nursing Home Patients 
Journal of the American Medical Directors Association  2012;14(4):10.1016/j.jamda.2012.10.006.
Among hospice patients who lived in nursing homes, we sought to: (1) report trends in hospice use over time, (2) describe factors associated with very long hospice stays (>6 months), and (3) describe hospice utilization patterns.
Design, setting, and participants
We conducted a retrospective study from an urban, Midwest cohort of hospice patients, aged ≥65 years, who lived in nursing homes between 1999 and 2008.
Demographic data, clinical characteristics, and health care utilization were collected from Medicare claims, Medicaid claims, and Minimum Data Set assessments. Patients with overlapping nursing home and hospice stays were identified. χ2 and t tests were used to compare patients with less than or longer than a 6-month hospice stay. Logistic regression was used to model the likelihood of being on hospice longer than 6 months.
A total of 1452 patients received hospice services while living in nursing homes. The proportion of patients with noncancer primary hospice diagnoses increased over time; the mean length of hospice stay (114 days) remained high throughout the 10-year period. More than 90% of all patients had 3 or more comorbid diagnoses. Nearly 20% of patients had hospice stays longer than 6 months. The hospice patients with stays longer than 6 months were observed to have a smaller percentage of cancer (25% vs 30%) as a primary hospice diagnosis. The two groups did not differ by mean cognitive status scores, number of comorbidities, or activities of daily living impairments. The greater than 6 months group was much more likely to disenroll before death: 33.9% compared with 13.8% (P < .0001). A variety of patterns of utilization of hospice across settings were observed; 21 % of patients spent some of their hospice stay in the community.
Any policy proposals that impact the hospice benefit in nursing homes should take into account the difficulty in predicting the clinical course of these patients, varying utilization patterns and transitions across settings, and the importance of supporting multiple approaches for delivery of palliative care in this setting.
PMCID: PMC3820369  PMID: 23181979
Hospice; nursing home; utilization; policy
6.  Palliative Care for Patients with Dementia: A National Survey 
To determine the extent to which hospice and nonhospice palliative care (PC) programs provide services to patients with dementia and to describe barriers and facilitators to providing nonhospice PC.
Telephone and Web-based surveys.
U.S. hospice and PC programs from the National Hospice and Palliative Care Organization’s program list.
Executive directors of 240 hospice programs, 173 programs providing hospice and nonhospice PC, and 13 programs providing nonhospice PC.
A telephone survey of hospice and PC providers followed by an online survey of programs providing nonhospice PC.
Ninety-four percent of hospices and 72% of PC programs had served at least one patient with a primary diagnosis of dementia within the past year. Based on 80 responses to the online survey, the most highly rated barriers to providing PC were lack of awareness of PC by families and referring providers, need for respite services, and reimbursement policies. Highly rated needs were family information, assistance with caregiver burden, and behavioral symptoms. Strategies critical for success were an interdisciplinary team, collaboration with community organizations, and alternatives to aggressive end-of-life care.
Almost all hospices and a majority of nonhospice PC programs serve patients with dementia. Education and policy efforts should focus on education for families and providers, support for caregivers, and reforming reimbursement structures to provide coverage for interdisciplinary PC earlier in the disease, when patients have high needs but are not hospice eligible.
PMCID: PMC3167066  PMID: 21054292
dementia; hospice; palliative care
7.  The Relationships Among Pain, Non-pain Symptoms, and Quality of Life Measures in Older Adults with Cancer Receiving Hospice Care 
Pain medicine (Malden, Mass.)  2011;12(6):880-889.
Gathering first hand or reported information about patients in the final stages of terminal cancer is difficult due to patient frailty, cognitive impairment, excessive fatigue and severity of illness, as well as gatekeeping by hospice providers and caregivers, and highly variable documentation practices.
We sought to further understand and elucidate end-of-life experiences in older cancer patients through the application of validated tools employed in the hospice setting. This paper summarizes data collected about pain, non-pain symptoms, and other aspects of quality of life (QOL) as reported by older hospice patients or their caregivers during the first two weeks of hospice care.
Data was collected from an ongoing IRB approved research project with 94 older adults with cancer or their caregivers receiving service in a home setting from 14 Midwestern hospices. Participants completed one or two telephone interviews. Instruments used to gather information include the Brief Pain Inventory (BPI) and the Brief Hospice Inventory (BHI).
Data analysis showed mean “worst pain” ratings significantly decreased from interview 1 to interview 2 and pain reports were significantly correlated with fatigue, anxiety, appetite, comfort, symptom control and overall QOL.
Our findings reinforce previously held views that older patients with cancer experience pain and non-pain symptoms. And both pain and non-pain symptoms can impact and confound the treatment of other symptoms and interfere with the patient's overall QOL. The results of this study support the assertion that hospice care can have a positive impact on pain severity and related suffering, as well as patient QOL as death approaches.
PMCID: PMC3117028  PMID: 21539700
older adult; cancer pain; pain assessment; pain management; quality of life; hospice
8.  Cholinesterase Inhibitor and N-Methyl-D-Aspartic Acid Receptor Antagonist Use in Older Adults with End-Stage Dementia: A Survey of Hospice Medical Directors 
Journal of Palliative Medicine  2009;12(9):779-783.
Cholinesterase inhibitors and N-methyl-D-aspartic acid (NMDA) receptor antagonists are Food and Drug Administration (FDA) approved for the treatment of moderate to severe Alzheimer's disease. As dementia progresses to the end stage and patients become hospice-eligible, clinicians consider whether or not to continue these therapies without the benefit of scientific evidence. We sought to describe hospice medical directors practice patterns and experiences in the use and discontinuation of cholinesterase inhibitors and NMDA receptor antagonists in hospice patients that meet the Medicare hospice criteria for dementia.
Study Design
Mail survey of hospice medical directors from a random sample from the National Hospice and Palliative Care Organization.
Of the 413 eligible participants, 152 completed surveys were returned, yielding a response rate of 37%. Of the respondents, 75% and 33% reported that at least 20% of their patients were taking a cholinesterase inhibitor or memantine, respectively, at the time of hospice admission. The majority of respondents do not consider these therapies effective in persons with end-stage dementia, however, a subset believe that these medications improved patient outcomes including stabilization of cognition (22%), decrease in challenging behaviors (28%), and maintenance of patient function (22%) as well as caregiver outcomes namely reduced caregiver burden (20%) and improved caregiver quality of life (20%). While 80% of respondents recommended discontinuing these therapies to families at the time of hospice enrollment, 72% of respondents reported that families experienced difficulty stopping these therapies. A subset of respondents observed accelerated cognitive (30%) and functional decline (26%) or emergence of challenging behaviors (32%) with medication discontinuation.
The findings from this survey indicate that cholinesterase inhibitors and/or NMDA receptor antagonists are prescribed for a subset of patients with advanced dementia and that a proportion of hospice medical directors report clinical benefit from the ongoing use of these agents. In addition, physician preferences for discontinuing these therapies are frequently at odds with the wishes of family members. Prospective studies are needed to evaluate the clinical impact of the discontinuation of these therapies on patient and caregiver outcomes.
PMCID: PMC2988459  PMID: 19622011
9.  Reporting Characteristics of Cancer Pain: A Systematic Review and Quantitative Analysis of Research Publications in Palliative Care Journals 
A common disorder requiring symptom palliation in palliative and end-of-life care is cancer. Cancer pain is recognized as a global health burden. This paper sought to systematically examine the extent to which there is an adequate scientific research base on cancer pain and its reporting characteristics in the palliative care journal literature.
Materials and Methods:
Search conducted in MEDLINE and CINAHL sought to locate all studies published in 19 palliative/ hospice/ supportive/ end-of-life care journals from 2009 to 2010. The journals included were: American Journal of Hospice and Palliative Care, BMC Palliative Care, Current Opinion in Supportive and Palliative Care, End of Life Care Journal, European Journal of Palliative Care, Hospice Management Advisor, Indian Journal of Palliative Care, International Journal of Palliative Nursing, Internet Journal of Pain Symptom Control and Palliative Care, Journal of Pain and Palliative Care Pharmacotherapy, Journal of Palliative Care, Journal of Palliative Medicine, Journal of Social Work in End-of-life and Palliative Care, Journal of Supportive Oncology, Palliative Medicine, Palliative and Supportive Care, and Supportive Care in Cancer. Journal contents were searched to identify studies that included cancer pain in abstract.
During the years 2009 and 2010, of the selected 1,569 articles published in the journals reviewed, only 5.86% (92 articles) were on cancer pain.
While researchers in the field of palliative care have studied cancer pain, the total percentage for studies is still a low 5.86%. To move the field of palliative care forward so that appropriate guidelines for cancer pain management can be developed, it is critical that more research be reported upon which to base cancer pain therapy in an evidence-based palliative care model.
PMCID: PMC3098545  PMID: 21633623
Cancer pain; Palliative care research; Reporting characteristics
10.  Improving Hospice Outcomes through Systematic Assessment: A Clinical Trial 
Cancer nursing  2011;34(2):89-97.
Systematic assessment is vital to palliative care, but documentation confirming completion of systematic assessment in hospice settings is often inadequate or absent.
To determine the efficacy of systematic feedback from standardized assessment tools for hospice patient/caregiver dyads in improving hospice outcomes compared to the usual clinical practice.
The sample of patients (n=709) newly admitted to hospice homecare in two hospices had designated family caregivers. The interdisciplinary teams (IDT) caring for these dyads were randomly assigned to either experimental (n=338) or control (n=371) conditions. Data were collected from both groups of dyads using standardized assessments on admission, and one week after each of the first two IDT meetings in which these dyads were discussed. The experimental intervention consisted of reporting data from the standardized assessments to the IDTs.
Results showed improved patient depression (p.<.001) as a result of the intervention, and improvement in both groups in patient quality of life (p.<.001). No other patient outcomes (symptom distress, spiritual needs) or caregiver outcomes (depression, support, spiritual needs) were significantly different.
Assessment of depression added to usual care probably had an effect because it is not normally a focus of hospice staff. Hospice care was so good during the study that overall quality of life improved as a result of standard care and left little room for improvement in other variables.
Implications for Practice
Systematic assessment of depression is needed in hospice patients. No caregiver variables changed, which may indicate a need for a focus on caregivers.
PMCID: PMC3036771  PMID: 20885302
11.  Hospice for Nursing Home Residents: Does Ownership Type Matter? 
Journal of Palliative Medicine  2013;16(10):1221-1226.
Currently, more than half of all nursing home residents use hospice at some point. Studies have shown benefits to hospice enrollment for patients; however, the literature on ownership differences in hospice care in general has indicated that for-profit hospices offer a narrower scope of services and employ fewer professional staff. Although nursing home staffing patterns have been shown to be essential to quality of care, the literature has not explored differences in number of patients per staff member for hospice care within nursing homes.
We hypothesized that for-profit hospices would have a higher number of patients per staff member for home care workers (HCWs), registered nurses (RNs), and medical social workers (MSWs), and this relationship would be moderated by the proportion of hospice users living in nursing homes. Using data from the National Hospice Survey, a random sampling of all Medicare-certified hospices operating between September 2008 and November 2009, we identified 509 hospices that served individuals living in a nursing home, with 89 hospices having 50% or greater of their clients living in a nursing home.
Adjusted analysis indicated a higher number of patients per staff member for HCWs and RNs among for-profit hospices. Moreover, compared with nonprofit hospices, for-profit hospices with a high proportion of nursing home residents had 36 more patients per HCW (p=0.011) and 24 more patients per RN (p=0.033).
Staffing is an important indicator of hospice quality, thus our findings may be useful for anticipating potential impacts of the growth in for-profit hospice on nursing home residents.
PMCID: PMC3791037  PMID: 23895303
12.  Impact of Hospice Disenrollment on Health Care Use and Medicare Expenditures for Patients With Cancer 
Journal of Clinical Oncology  2010;28(28):4371-4375.
Patients with cancer represent the largest diagnostic group of hospice users, with 560,000 referred for hospice in 2008. Oncologists rely on hospice teams to provide care for patients who have completed disease-directed treatment and desire to remain at home. However, 11% to 15% of hospice users disenroll from hospice, and little is known about their health care use and Medicare expenditures.
Patients and Methods
We used Surveillance, Epidemiology and End Results–Medicare data for hospice users who died as a result of cancer between 1998 and 2002 (N = 90,826) to compare rates of hospitalization, emergency department, and intensive care unit admission and hospital death for hospice disenrollees and those who remained with hospice until death. We also compared per-day and total Medicare expenditures across the two groups.
Patients with cancer who disenrolled from hospice were more likely to be hospitalized (39.8% v 1.6%; P < .001), more likely to be admitted to the emergency department (33.9% v 3.1%; P < .001) or intensive care unit (5.7% v 0.1%; P < .001), and more likely to die in the hospital (9.6% v 0.2%; P < .001). Patients who disenrolled from hospice died a median of 24 days following disenrollment, suggesting that the reason for hospice disenrollment was not improved health. In multivariable analyses, hospice disenrollees incurred higher per-day Medicare expenditures than patients who remained with hospice until death (higher per-day expenditures of $124; P < .001).
Hospice disenrollment is a marker for higher health care use and expenditures for care. Strategies to manage a patient's care and support family caregivers following hospice disenrollment may be beneficial and should be explored.
PMCID: PMC2954136  PMID: 20805463
13.  Preliminary Report of a Palliative Care and Case Management Project in an Emergency Department for Chronically Ill Elderly Patients 
Journal of Urban Health   2008;85(3):443-451.
The Palliative Care Service at Montefiore Medical Center (MMC) established a pilot project in the emergency department (ED) to identify chronically ill older adults in need of palliative care, homecare, and hospice services and to link such patients with these services. Two advance practice nurses conducted consultations on elderly patients who were found to have one or more “palliative care triggers” on initial screening. A standardized medical record abstraction form was developed. Service utilization and survival were evaluated using the Clinical Information Systems of MMC. Activity of daily living items were developed from the Outcome and Assessment Information Set and the Palliative Care Performance Scale (PPS). Risk factors for hospitalization and use of the ED were taken from the SIGNET model risk screening tool. Physical and emotional symptoms were evaluated using the 28-item Memorial Symptom Assessment Scale short form. Preliminary outcomes and characteristics are presented for 291 patients who completed the intake needs assessment questionnaire. Almost one third (30.9%) of the study cohort died during the project period. Most of the deaths occurred beyond the medical center (7.7% died in the medical center and 23.3% outside the medical center). Thirty percent of patients who died were enrolled on a hospice. Survival time was predicted by the presence of dyspnea, clinician prediction of death on the current hospitalization, psychosocial distress, and PPS scores. Chronically ill patients visiting an urban community ED had complex medical and psychosocial problems with limited support systems and homecare services. Significant proportions of such patients can be expected to have limited likelihood of survival. The presence of palliative homecare and hospice outreach services in the ED in urban community hospitals may provide an effective strategy for linkage of elderly patients at the end of life with otherwise underutilized services.
PMCID: PMC2329741  PMID: 18363108
Case management project; Chronically ill elderly patients; Palliative care.
14.  A Nursing Informatics Research Agenda for 2008–18: Contextual Influences and Key Components 
Nursing outlook  2008;56(5):206-214.e3.
The context for nursing informatics research has changed significantly since the National Institute of Nursing Research-funded Nursing Informatics Research Agenda was published in 1993 and the Delphi study of nursing informatics research priorities reported a decade ago. The authors focus on three specific aspects of context - genomic health care, shifting research paradigms, and social (Web 2.0) technologies - that must be considered in formulating a nursing informatics research agenda. These influences are illustrated using the significant issue of healthcare associated infections (HAI). A nursing informatics research agenda for 2008–18 must expand users of interest to include interdisciplinary researchers; build upon the knowledge gained in nursing concept representation to address genomic and environmental data; guide the reengineering of nursing practice; harness new technologies to empower patients and their caregivers for collaborative knowledge development; develop user-configurable software approaches that support complex data visualization, analysis, and predictive modeling; facilitate the development of middle-range nursing informatics theories; and encourage innovative evaluation methodologies that attend to human-computer interface factors and organizational context.
PMCID: PMC2613178  PMID: 18922269
15.  A Cross-Sectional Analysis of the Prevalence of Undertreatment of Nonpain Symptoms and Factors Associated With Undertreatment in Older Nursing Home Hospice/Palliative Care Patients 
Approximately 25% of all US deaths occur in the long-term care setting, and this figure is projected to rise to 40% by the year 2040. Currently, there is limited information on nonpain symptoms and their appropriate treatment in this setting at the end of life.
This study evaluated the prevalence of undertreatment of nonpain symptoms and factors associated with undertreatment in older nursing home hospice/palliative care patients.
This study used a cross-sectional sample of older (≥65 years) hospice/palliative care patients to represent all patients from the 2004 National Nursing Home Survey (NNHS) funded by the Centers for Disease Control and Prevention. Nonpain symptoms were determined from facility staff, who used the medical records to answer questions about the residents. Data on medication use were derived from medication administration records. Undertreatment was defined as the omission of a necessary medication for a specific nonpain symptom and was evaluated as a dichotomous variable (yes = the nonpain symptom was not treated with a medication; no = the nonpain symptom was treated with a medication). Cross-sectional bivariate analyses were conducted using χ2 and regression coefficient tests to determine factors potentially associated with undertreatment of nonpain symptoms.
The cross-sectional sample included 303 older nursing home hospice/palliative care patients from among the 33,413 (weighted) patients from the 2004 NNHS. Overall, most of the patients were white (91.4% [277/303]) and female (71.9% [218/303]), and nearly half were aged ≥85 years (47.9% [145/303]). One or more nonpain symptoms occurred in 82 patients (22.0% weighted). The most common nonpain symptoms (weighted percentages) were constipation/fecal impaction in 35 patients (8.8%), cough in 34 patients (9.2%), nausea/vomiting in 26 patients (7.2%), fever in 11 patients (3.1%), and diarrhea in 9 patients (1.9%). Medication undertreatment of any of the above symptoms was seen in 47 of 82 patients (60.0% weighted), ranging from a low of 26.4% for constipation/fecal impaction to a high of 88.0% for nausea/vomiting. Undertreated patients had significantly more problems with bed mobility (n [weighted %], 43 [92.3%] vs 21 [67.2%]; P = 0.013), mood (21 [44.7%] vs 7 [19.7%]; P = 0.017), and pressure ulcers (12 [25.7%] vs 2 [6.1%]; P = 0.023) than did treated patients. The undertreated group also had a significantly greater number of secondary diagnoses (weighted mean [SD], 6.5 [0.7] vs 5.2 [0.5]; P = 0.004) but had a shorter length of stay in hospice/palliative care (120.5 [20.1] vs 219.4 [51.8] days; P < 0.001) or in the nursing home (552.0 [96.5] vs 1285.4 [268.3] days; P = 0.001).
The prevalence of nonpain symptoms was low (22.0% weighted) in older nursing home hospice/palliative care patients. However, medication undertreatment of nonpain symptoms was seen in more than half of these patients. Future quality-improvement initiatives for nursing home hospice/palliative care patients are needed beyond the management of pain symptoms.
PMCID: PMC2929128  PMID: 20624612
long-term care; nursing homes; palliative care; hospice care; aged
16.  Support Needs of Informal Hospice Caregivers: A Qualitative Study 
Journal of Palliative Medicine  2009;12(12):1101-1104.
Informal caregivers of hospice patients experience multiple stressors that can negatively impact physical, psychological, and emotional health. The goal of this qualitative study was to understand caregivers' needs to inform the feasibility, structure, and content of a telephone-based counseling intervention.
Focus groups and interviews with 36 former hospice caregivers and 11 hospice staff from 6 hospices were conducted. Interviews and focus groups were audio-recorded, transcribed, and analyzed using a constant comparative approach.
Key content areas included coping, emotional support, self-care, logistical issues, and bereavement. Respondents supported telephone-based counseling, appreciating its relative anonymity and convenience. It was recommended that calls be initiated by the counselor, on a weekly basis, and that one counselor be assigned to each caregiver. Hospice staff emphasized the need to coordinate telephone counseling with hospice care, scheduling around and communicating with hospice staff. Most caregivers indicated that they would participate in telephone-based counseling were it available; hospice staff thought that half of caregivers would participate. A pervasive theme was that “there can never be enough support for a caregiver.”
Informal caregivers of hospice patients have support needs that are amenable to telephone-based counseling designed to be complementary to existing hospice services. Based on these qualitative findings, we are pilot-testing a telephone-based cognitive-behavioral stress management program for informal caregivers of hospice patients.
PMCID: PMC2883517  PMID: 19764830
17.  Hospice Utilization in Nursing Homes: Association With Facility End-of-Life Care Practices 
The Gerontologist  2012;53(5):817-827.
Objectives: Hospice care provided to nursing home (NH) residents has been shown to improve the quality of end-of-life (EOL) care. However, hospice utilization in NHs is typically low. This study examined the relationship between facility self-reported EOL practices and residents’ hospice use and length of stay. Design: The study was based on a retrospective cohort of NH residents. Medicare hospice claims, Minimum Data Set, Online Survey, Certification, and Reporting system and the Area Resource File were linked with a survey of directors of nursing (DON) regarding institutional EOL practice patterns (EOLC Survey). Setting and Participants: In total, 4,540 long-term–care residents who died in 2007 in 290 facilities which participated in the EOLC Survey were included in this study. Measurements: We measured NHs’ tendency to offer hospice to residents and to initiate aggressive treatments (hospital transfers and feeding tubes) for EOL residents based on DON’s responses to survey items. Residents’ hospice utilization was determined using Medicare hospice claims. Results: The prevalence of hospice use was 18%. The average length of stay was 93 days. After controlling for individual risk factors, facilities’ self-reported practice measures associated with residents’ likelihood of using hospice were tendency to offer hospice (p = .048) and tendency to hospitalize (p = .002). Residents in NHs reporting higher tendency to hospitalize tended to enroll in hospice closer to death. Conclusion: Residents’ hospice utilization is not only associated with individual and facility characteristics but also with NHs’ self-reported EOL care practices. Potential interventions to effect greater use of hospice may need to focus on facility-level care processes and practices.
PMCID: PMC3858022  PMID: 23231947
Hospice utilization; Hospice length of stay; Quality of end-of-life care; Nursing home end-of-life care practices; Hospice referral
18.  Conducting the ACTIVE Randomized Trial in Hospice Care: Keys to Success 
Clinical trials (London, England)  2012;10(1):10.1177/1740774512461858.
Untreated pain is common for patients at the end of life. Informal caregivers, often family or friends of patients, are responsible for working with hospice staff to provide pain management. Interdisciplinary team meetings conducted in hospices every two weeks provide an opportunity for hospice staff to communicate about pain management with informal caregivers of hospice patients.
We present challenges, solutions, and keys strategies for carrying out a randomized trial in the hospice setting.
We are conducting the ACTIVE study (Assessing Caregivers for Team Intervention through Video Encounters) to determine whether regular videoconferencing between hospice patients' informal caregivers and the hospice care team alters caregivers' perceptions of pain management and patients' pain. Participants must be primary caregivers for a hospice patient, at least 18 years of age, capable of providing informed consent, and have access to a computer with a high-speed Internet connection or a telephone. We randomized caregivers to participate in biweekly team meetings through video or phone conferencing (intervention) or to receive usual care from the hospice. All patients receive standard hospice care regardless of the group assignment of their informal caregiver.
As of July 1, 2012, there has been 1038 new admissions to the participating hospices. Of 391 cases in which no contact was made, 233 patients had died or had life expectancy less than 14 days. Home visits were made to 271 interested and eligible caregivers; 249 caregivers of 233 patients were randomly assigned to the usual care or intervention arm. Enrollment is on pace to meet recruitment goals.
Lessons Learned
Thorough pilot-testing of instruments and procedures helped us overcome barriers to conducting research in this vulnerable population. Keys to success included obtaining support from hospice medical directors, including hospice staff in study preparation, minimizing the burden on hospice staff, housing research staff in each participating hospice, using newsletters to enhance communication, developing and maintaining a detailed procedural manual, producing regular data quality reports, developing a secure site to facilitate coding videos for qualitative studies, and holding regular teleconferences with key staff.
Late enrollment of many patients in hospice left little to no time for their caregivers to take part in the intervention. Assisting caregivers of patients with very short life expectancy may require different methods.
The challenges of conducting randomized trials with hospice patients and caregivers can be addressed with appropriate study design, well-tested research methods, and proactive monitoring of any issues or problems.
PMCID: PMC3554844  PMID: 23104974
hospice; randomized trial; pain management; videoconference; caregivers; interdisciplinary teams
19.  Medicare’s Hospice Benefit: Analysis of Utilization and Resource Use 
Medicare & Medicaid Research Review  2014;4(2):mmrr2014-004-02-b03.
This work provides descriptive statistics on hospice users. It also explores the magnitude of relative resource use during hospice episodes and whether such patterns vary by episode length for patients who only use routine home care as compared to those who use multiple levels of hospice care. Examining resource use for hospice users who require different hospice levels of care within an episode versus solely routine home care provides insight to the varied resource use associated with the different patient populations (i.e., those who may require steady routine home care across the entire episode versus those who require varied levels of care across the episode).
Data Source
The analyses were based on a longitudinal analytic file that was constructed from 100% of Medicare claims for hospice users with completed episodes spanning September 1, 2008 through the end of calendar year 2011. In examining resource use for routine home care users and all levels of hospice care, the analyses were restricted to single episode decedents who began their hospice episode on or after April 1, 2010 and whose date of death was on or before December 31, 2011. Daily wage-weighted visit units (WWVUs) were calculated for each patient during their hospice stay. In order to compute a WWVU, one-fourth of the Bureau of Labor Statistics hourly wage rate for each visit discipline (i.e., skilled nursing, medical social services, home health aide, and an average for therapies) was multiplied by the corresponding number of visit units reported on hospice claims.
Principal Findings
Using enhanced data on the intensity of service use, the results confirm previous research that suggested a curved pattern to service use during a hospice episode. For several measures of resource intensity, service use is more intensive during the initial days in the episode and for the last few days prior to death relative to the middle days of the episode. The pattern becomes more pronounced as episodes increase in length, but is otherwise a similar curve when compared by diagnosis. Thus, the results provide useful information for potential policy discussions about Medicare hospice reform.
PMCID: PMC4120783  PMID: 25097798
Medicare; Medicare hospice; hospice benefit; hospice resource use; hospice utilization
20.  Association of hospice patients' income and care level with place of death 
JAMA internal medicine  2013;173(6):450-456.
Terminally ill patients with lower incomes are less likely to die at home, even with hospice care.
Analysis of VITAS hospice patients admitted to routine care in a private residence between January 1, 1999 and December 31, 2003. We matched zip codes to U.S. census tracts to generate annual median household incomes and divided the measure into $10,000 increments from ≤$20,000 to >$50,000). To examine the relationship between income and transfer from home before death, we used logistic regression (adjusted for demographics, diagnosis, region, length of stay). We also examined the interaction between income and level of hospice care (any vs. no continuous care) as a predictor of transfer from home. Unlike routine care which includes periodic visits by hospice, continuous care is a higher level of care, used for short periods of crisis to keep a patient at home and includes hospice services in the home at least 8 hours in a 24 hour period.
Of the 61,063 enrollees admitted to routine care in a private residence, 13,804 (22.6%) transferred from home to another location (i.e. inpatient hospice unit, nursing home) with hospice care before death. Patients who transferred had a lower average median household income ($42,585 vs. $46,777, P<0.001) and were less likely to have received any continuous care (49.38% vs. 30.61%, P<0.001). The median number of days of continuous care was 4. For patients who did not receive continuous care, the odds of transfer from home before death increased with decreasing annual median household incomes (OR range 1.26—1.76). For patients who received continuous care, income was not a predictor of transfer from home.
Patients with limited resources may be less likely to die at home, especially if they are not able to access needed support beyond what is available with routine hospice care.
PMCID: PMC3889123  PMID: 23420383
21.  Hospice experiences and approaches to support and assess family caregivers in managing medications for home hospice patients: A providers survey 
Palliative medicine  2012;27(4):329-338.
Hospice providers need to ensure that informal, unpaid caregivers can safely manage medications to alleviate pain and distressing symptoms in patients near the end of life.
This study characterizes hospice providers' self-reported experiences and approaches to helping caregivers' medication management for home hospice patients.
Survey with mixed-method analysis.
Surveys were administered to a convenience sample of 98 hospice providers (74 nurses, 6 physicians, 11 social workers, 7 chaplains) from 5 Chicago-based agencies in the United States.
Among respondents, 67% rated ensuring proper medication management as “most important” in hospice care delivery, and 33% reported frequently encountering caregivers with problems managing medications. To assess if caregivers had problems managing medications, two categories of approaches emerged from the data: prospective approaches and retrospective warning signs when a problem occurred (e.g. identifying medication nonadherence after observing a sudden patient health decline). Overall, 42% reported using at least one prospective approach, while 38% reported only retrospective signs. To help caregivers manage medications, three categories of approaches emerged: teaching to increase knowledge, supporting existing or simplifying medication management process, and counseling to overcome attitudinal barriers. Overall, 6% reported approaches from all three categories. About 28% frequently experienced difficulty teaching/supporting caregivers with medication management. As much as 47% believed that they would benefit “to a great extent” from additional resources to help caregivers.
Supporting caregivers in medication management is considered important, yet challenging, to hospice providers. Additional resources may be needed to help providers consistently and effectively teach, support, and assess caregivers' medication management.
PMCID: PMC3606683  PMID: 23175509
Hospices; caregivers; medication adherence; terminal care; self-care
22.  Perceived Barriers that Impede Provider Relations and Medication Delivery: Hospice Providers’ Experiences in Nursing Homes and Private Homes 
Journal of palliative medicine  2010;13(3):305-310.
Hospice providers often work with nursing home providers or with family caregivers to deliver medication services aimed at alleviating suffering in patients with life-limiting illnesses. From the perspective of hospice providers, this study explores barriers that may impede provider relations and medication delivery in nursing homes and private homes.
Semi-structured, open-ended interviews were conducted in-person with a purposive sample of 22 hospice providers (14 registered nurses, 4 physicians, and 4 social workers) from 4 hospice programs in the greater Chicago metropolitan area.
In general, registered nurses, doctors, and social workers discussed similar barriers in nursing homes and in private homes. According to hospice providers, nursing home providers and family caregivers exhibited comparable attitudinal barriers (“owning” their settings; “knowing what’s best for the patient”; distrust toward hospice; and emotional state), and encountered similar site-readiness barriers (ill-defined hierarchy, poor communication, disagreements among care providers, and responsibility overload). Additionally, comparable alignment barriers (differences in care priority and in education/training) existed between hospice providers and care providers in nursing homes and private homes. Together, these barriers impeded care providers’ communication with hospice providers and their readiness to accept hospice guidance. Overall, poor provider relations compromised the efficiency and quality of medication management, as well as potentially undermined the role of hospice providers.
From the perspectives of hospice providers, this study provides preliminary insight into barriers that multilevel interventions may need to address to improve provider relations and medication delivery in nursing homes and private homes.
PMCID: PMC2828533  PMID: 20078242
hospice care; prescription medications; family caregivers
23.  Perceived Barriers that Impede Provider Relations and Medication Delivery: Hospice Providers' Experiences in Nursing Homes and Private Homes 
Journal of Palliative Medicine  2010;13(3):305-310.
Hospice providers often work with nursing home providers or with family caregivers to deliver medication services aimed at alleviating suffering in patients with life-limiting illnesses. From the perspective of hospice providers, this study explores barriers that may impede provider relations and medication delivery in nursing homes and private homes.
Semistructured, open-ended interviews were conducted in-person with a purposive sample of 22 hospice providers (14 registered nurses, 4 physicians, and 4 social workers) from 4 hospice programs in the greater Chicago metropolitan area.
In general, registered nurses, doctors, and social workers discussed similar barriers in nursing homes and in private homes. According to hospice providers, nursing home providers and family caregivers exhibited comparable attitudinal barriers (“owning” their settings; “knowing what's best for the patient”; distrust toward hospice; and emotional state), and encountered similar site-readiness barriers (ill-defined hierarchy, poor communication, disagreements among care providers, and responsibility overload). Additionally, comparable alignment barriers (differences in care priority and in education/training) existed between hospice providers and care providers in nursing homes and private homes. Together, these barriers impeded care providers' communication with hospice providers and their readiness to accept hospice guidance. Overall, poor provider relations compromised the efficiency and quality of medication management, as well as potentially undermined the role of hospice providers.
From the perspectives of hospice providers, this study provides preliminary insight into barriers that multilevel interventions may need to address to improve provider relations and medication delivery in nursing homes and private homes.
PMCID: PMC2828533  PMID: 20078242
24.  A Bimonthly Interdisciplinary State-wide Palliative Care Case Conference Promotes Education, Networking, and Emotional Support 
Meeting emotional, educational, and professional development needs for palliative care practitioners is a priority of clinical practice guidelines for quality palliative care. Here, we introduce and evaluate Palliative Pupus, a novel, state-wide, interdisciplinary, case conference designed to meet these needs.
Palliative Pupus is a free, interdisciplinary case conference open to all hospice and palliative care clinicians in Hawai‘i. The conference has convened every other month since 2010 and is jointly sponsored by Hawai‘i's largest hospital-based palliative care program and Kokua Mau, Hawai‘i's hospice and palliative care organization. Twenty to forty participants typically meet on the island of O‘ahu and are joined by participants from other islands who attend remotely via audio or video conferencing technology. Attendees at the Palliative Pupus on May 15th, 2013 were asked to complete an anonymous evaluation tool designed for this purpose. Demographic data were analyzed using SPSS software (IBM, 1911) and inductive content analysis was carried out on open-ended questions.
Twenty-four attendees participated in the study. The majority of participants were women (75%). The leading disciplines of attendees were nursing (46%), medicine (25%), and chaplaincy (12.5%). The primary work settings were hospice (67%) and hospital (25%). Participants cited education (96%), networking (87%), and emotional support (37%) as reasons for attending. Inductive content analysis revealed the most valued benefits of attending were educational (71%), an enhanced sense of being part of a community of providers (24%), and emotional/psychological support (24%). Respondents agreed that the format of the conference would work in other communities (100%) and that they would recommend attending the conference to others (100%).
Palliative Pupus is an innovative and sustainable state-wide approach to meeting diverse educational, emotional, and networking needs for practitioners in palliative care. Participants expressed confidence that this approach could be successfully disseminated to other states.
PMCID: PMC4175964
25.  The ACTive Intervention in Hospice Interdisciplinary Team Meetings: Exploring family caregiver and hospice team communication 
This paper presents the theoretical framework and rationale for the ACTive intervention which proposes the use of video technology to facilitate patient and family participation in hospice interdisciplinary team meetings where plans of care are determined. It is surmised that patient and family involvement will improve communication and compliance in hospice care. An analysis of data from a pilot project of the ACTive intervention was conducted to explore active participation among family caregivers and the hospice team. Through the use of videophone technology caregivers participated in video-recorded team meetings. The actual communication behaviors of caregivers and team members were analyzed for active participation. Findings revealed that team–prompted caregiver participation was most common, however, team use of supportive talk in this context was considerably less frequent. The study also found that the team’s use of active participation behaviors elicits caregiver active participation behaviors. The results of this study suggest the intervention was an effective way to involve family caregivers as active participants in the designing of care for their loved one. Findings also suggest that hospice staff would benefit from education and training on best practices for communicating with caregivers in the team meeting setting.
PMCID: PMC2882300  PMID: 20543889

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