Public Attitudes Regarding Hospitals and Physicians Encouraging Donations From Grateful Patients.

Importance: Philanthropy is an increasingly important source of support for health care institutions. There is little empirical evidence to inform ethical guidelines. Objective: To assess public attitudes regarding specific practices used by health care institutions to encourage philanthropic donations from grateful patients. Design, Setting, and Participants: Using the Ipsos KnowledgePanel, a probability-based sample representative of the US population, a survey solicited opinions from a primary cohort representing the general population and 3 supplemental cohorts (with high income, cancer, and with heart disease, respectively). Exposures: Web-based questionnaire. Main Outcomes and Measures: Descriptive analyses (with percentages weighted to make the sample demographically representative of the US population) evaluated respondents' attitudes regarding the acceptability of strategies hospitals may use to identify, solicit, and thank donors; perceptions of the effect of physicians discussing donations with their patients; and opinions regarding gift use and stewardship. Results: Of 831 individuals targeted for the general population sample, 513 (62%) completed surveys, of whom 246 (48.0%) were women and 345 (67.3%) non-Hispanic white. In the weighted sample, 47.0% (95% CI, 42.3%-51.7%) responded that physicians giving patient names to hospital fundraising staff after asking patients' permission was definitely or probably acceptable; 8.5% (95% CI, 5.7%-11.2%) endorsed referring without asking permission. Of the participants, 79.5% (95% CI, 75.6%-83.4%) reported it acceptable for physicians to talk to patients about donating if patients have brought it up; 14.2% (95% CI, 10.9%-17.6%) reported it acceptable when patients have not brought it up; 9.9% (95% CI, 7.1%-12.8%) accepted hospital development staff performing wealth screening using publicly available data to identify patients capable of large donations. Of the participants, 83.2% (95% CI, 79.5%-86.9%) agreed that physicians talking with their patients about donating may interfere with the patient-physician relationship. For a hypothetical patient who donated $1 million, 50.1% (95% CI, 45.4%-54.7%) indicated it would be acceptable for the hospital to show thanks by providing nicer hospital rooms, 26.0% (95% CI, 21.9%-30.1%) by providing expedited appointments, and 19.8% (95% CI, 16.1%-23.5%) by providing physicians' cell phone numbers. Conclusions and Relevance: In this survey study of participants drawn from the general US population, a substantial proportion did not endorse legally allowable approaches for identifying, engaging, and thanking patient-donors.

Targeted investment improves access to hospice and palliative care.

CONTEXT: Availability of hospice and palliative care is increasing, despite lack of a clear national strategy for developing and evaluating their penetration into and impact on the target population. OBJECTIVES: To determine whether targeted investment (i.e., strategic grants made by one charitable foundation) in hospice and palliative care in one U.S. state (North Carolina [NC]) led to improved access to end-of-life care services as indicated by hospice utilization. METHODS: Access was measured by the death service ratio (DSR), defined as the proportion of people who died and were served by hospice for at least one day before death. Calculation of the DSR is based on counts of patients accessing hospice by county in a given year (numerator) and U.S. Census projected population data for that county (denominator). Multilevel modeling was the primary analytic strategy used to generate two models: 1) comparison of the DSR in counties with vs. without philanthropic funding and 2) relationship between years since receipt of a philanthropic grant and DSR. RESULTS: In NC, the average DSR increased from 20.7% in 2003 to 35.8% in 2009 (55% increase). In 2009, 82 of 100 NC counties had a DSR below the U.S. average (41.6%). In Model 1, significant associations were found between county population and DSR (P=0.03) and between receipt of philanthropic funding and DSR (P=0.01); on average, funded counties had a DSR that was 2.63 percentage points higher than unfunded counties. CONCLUSION: Receipt of philanthropic funding appeared to be associated with improved access to palliative care and hospice services in NC.

Demonstration of a sustainable community-based model of care across the palliative care continuum.

CONTEXT: In the U.S., the number of hospital-based palliative care programs has increased rapidly, but availability of outpatient palliative care remains limited. Multiple barriers impede the financial viability of these programs. Four Seasons, a nonprofit organization in western North Carolina, delivers a full spectrum of palliative care in hospitals, nursing homes, assisted living facilities, patients' homes, and outpatient clinics; its catchment area encompasses approximately 350,000 people. Initially focused on hospice care, Four Seasons added its palliative care program in 2003. Before the inquiry described herein, financial losses from outpatient palliative care (2003-2008) were escalating. OBJECTIVES: We explored organizational and financial barriers to sustainability of palliative care, so as to 1) identify reasons for financial losses; 2) devise and implement solutions; and 3) develop a sustainable model for palliative care delivery across settings, including the outpatient setting. METHODS: In 2008, Four Seasons's palliative care program served 305 patients per day (average) with 10.5 providers (physicians, nurse practitioners, and physician assistants); financial losses approached $400,000 per year. We used Quality Assessment and Performance Improvement cycles to identify challenges to and inefficiencies in service provision, developed targeted strategies for overcoming identified barriers to cost-efficiency, instituted these measures, and tracked results. RESULTS: In 2011, Four Seasons served 620 palliative care patients per day (average) with 14 providers; financial losses decreased by 40%. CONCLUSION: With health care reform promoting integration of care across settings, outpatient palliative care will gain importance in the health care continuum. Process changes can help reduce financial losses that currently impede outpatient palliative care programs.

Key characteristics of palliative care studies reported in the specialized literature.

CONTEXT: Although research activity in palliative care is rapidly increasing, the composition of published studies--in terms of significant research characteristics--has not yet been well described. OBJECTIVES: To describe the topics of and funding for palliative care studies reported in the three hospice and palliative care journals with the highest impact factors (Journal of Pain and Symptom Management, Palliative Medicine, and Journal of Palliative Medicine). METHODS: This was a substudy of a larger bibliographic study. The targeted journals were searched for 2007 using a previously validated Ovid MEDLINE filter for palliative care. All empirical palliative care studies were included. Articles were classified according to topics (palliative care patient, caregiver/family, health professional, service provision, tool development, healthy volunteer, medication compatibility, community), study type (intervention, nonintervention), country of origin, and funding source (pharmaceutical company, other funder, unfunded). RESULTS: Of 409 citations identified, the search yielded 189 eligible articles. Most articles were descriptive/observational. Approximately half were unfunded. Caregivers, healthy volunteers, and health service research were the least frequent topics for research. Only five randomized controlled trials were reported. CONCLUSION: Although there is a broad range of research undertaken in palliative care, few studies generate high-level evidence, with data showing a relative lack of funding for hospice and palliative care studies.

Refining a checklist for reporting patient populations and service characteristics in hospice and palliative care research.

CONTEXT: In specialist hospice and palliative care services, variations occur in diagnoses and prognoses of subpopulations referred, service configuration, and the health systems delivering care. These three levels of variation limit the ability to generalize study findings. OBJECTIVES: This article reports on coding one year of palliative care research using a previously developed checklist. The aims were to 1) quantify current reporting of factors related to generalizability in specialist palliative care research; 2) review and potentially refine the checklist in light of the first aim; 3) demonstrate the feasibility of collecting these data; and 4) set out simple processes to aid researchers in reporting, and clinicians in applying, new research evidence in hospice and palliative care. METHODS: A previously published checklist (five domains, 14 core subdomains, and 24 noncore subdomains) was used to code all research articles (n=189) published in 2007 in the three leading palliative care research journals. RESULTS: The most frequently reported subdomains were patient age, gender, and diagnosis; model of service delivery; and patient performance status. Data in subdomains, including time from referral to death, socioeconomic indices, and ethnicity, were rarely reported; none reported whole-of-service or whole-of-population data. In total, 2646 (189×14) core subdomains could have been reported. Data were provided in 28% (746/2646). CONCLUSION: Checklists such as the Consolidated Standards of Reporting Trials evaluate study design, focusing mainly on internal validity. The proposed checklist deals with specific content of hospice and palliative care, focusing on external validity.

Dyspnea review for the palliative care professional: treatment goals and therapeutic options.

Although dyspnea is frequently encountered in the palliative care setting, its optimal management remains uncertain. Clinical approaches begin with accurate assessment, as delineated in part one of this two-part series. Comprehensive dyspnea assessment, which encompasses the physical, emotional, social, and spiritual aspects of this complex symptom, guide the clinician in choosing therapeutic approaches herein presented as part two. Global management of dyspnea is appropriate both as complementary to disease-targeted treatments that target the underlying etiology, and as the sole focus when the symptom has become intractable, disease is maximally treated, and goals of care shift to comfort and quality of life. In this setting, current evidence supports the use of oral or parenteral opioids as the mainstay of dyspnea management, and of inhaled furosemide and anxiolytics as adjuncts. Nonpharmacologic interventions such as acupuncture and pulmonary rehabilitation have potential effectiveness, although further research is needed, and use of a simple fan warrants consideration given its potential benefit and minimal burden and cost.

Collecting data on quality is feasible in community-based palliative care.

BACKGROUND: Quality measurement in palliative care requires robust data from standardized data collection processes. We developed and tested the feasibility of the Quality Data Collection Tool version 1.0 (QDACTv1.0) for use in community-based palliative care. MEASURES: To evaluate for implementation barriers, we tested feasibility, acceptability, and utility of the QDACTv1.0 by reviewing use patterns, surveying clinician users, and reporting conformance with quality metrics. INTERVENTION: Comprising 37 questions within five domains, QDACTv1.0 was launched in May 2008 for data collection at point of care. OUTCOMES: Through March 2011, data on 5959 patients in 19,734 visits have been collected. We observed steady quarterly growth in data collection, positive clinician feedback, and successful mapping of data to quality metrics. Information gathered characterized practice variations and suggested quality improvement initiatives. Clinician feedback has driven updating to Quality Data Collection Tool version 2.0. CONCLUSIONS/LESSONS LEARNED: Standardized data collection is feasible in routine community-based palliative care and is valuable for quality monitoring.

Dyspnea review for the palliative care professional: assessment, burdens, and etiologies.

BACKGROUND: Dyspnea is a common symptom experienced by many patients with chronic, life-threatening, and/or life-limiting illnesses. Although it can be defined and measured in several ways, dyspnea is best described directly by patients through regular assessment, as its burdens exert a strong influence on the patient's experience throughout the trajectory of serious illness. Its significance is amplified due to its impact on family and caregivers. DISCUSSION: Anatomic and physiologic changes associated with dyspnea, and cognitive perceptions related to patients and the underlying disease, provide insights into how to shape interventions targeting this oppressive symptom. Additionally, as described in the concept of "total dyspnea," the complex etiology and manifestation of this symptom require multidisciplinary treatment plans that focus on psychological, social, and spiritual distress as well as physical components. Several validated assessment tools are available for clinical and research use, and choice of method should be tailored to the individual patient, disease, and care setting in the context of patient-centered care. CONCLUSION: This article, the first in a two-part series, reviews the identification and assessment of dyspnea, the burden it entails, and the underlying respiratory and nonrespiratory etiologies that may cause or exacerbate it.

When a chance to cut is not a chance to cure: a future for palliative surgery?

In the context of healthcare reform, Surgery stands at a critical juncture. Attempting to rein in healthcare spending, legislators and payers can be expected to closely examine the legitimacy and necessity of a variety of medical treatments, including surgical procedures. Among these procedures, the most at risk for dismissal based on perceived ineffectiveness or lack of need may be those performed near the end of life, when the potential benefit of surgical intervention may seem negligible. While procedures may be performed for a variety of reasons toward the end of life--some indeed being inappropriate and/or unnecessary--palliative surgery plays an important role in the management of incurable disease. The purposes of this article are to: describe the place for palliative surgery in the armamentarium of palliative care; discuss potential challenges to patients' access to palliative surgery that may arise from health policy or quality initiatives based on poor evidence; and outline a strategy for (a) systematically differentiating palliative surgeries from other, potentially expendable surgeries performed near the end of life, and (b) defining a plan for generating the evidence base to support best practice.

The value of data collection within a palliative care program.

Collecting reliable and valid data is an increasing expectation within palliative care. Data remain the crux for demonstrating value and quality of care, which are the critical steps to program sustainability. Parallel goals of conducting research and performing quality assessment and improvement can also ensure program growth, financial health, and viability in an increasingly competitive environment. Mounting expectations by patients, hospitals, and payers and inevitable pay-for-performance paradigms have transitioned data collection procedures from novel projects to expected standard operation within usual palliative care delivery. We present types of data to collect, published guides for data collection, and how data can inform quality, value, and research within a palliative care organization. Our experiences with the Quality Data Collection Tool (QDACT) in the Carolinas Palliative Care Consortium to collect data on quality have led to valuable lessons learned in creating a data collection system. Suggested steps in forming data-sharing collaborations and building data collection procedures are shared.

International perspective: outcomes of palliative oncology.

Accompanying the ascendance of cancer as a leading cause of death worldwide is a new set of global health priorities focused on palliative care--the relief of symptoms and suffering, optimization of functional status, and quality of life for those with advanced, potentially life-limiting illnesses. In high-income countries, palliative care improves outcomes for patients, caregivers, provider organizations, and health systems. Data are not yet available to demonstrate similar benefits in low- and middle-income countries, where access to even the most basic palliative interventions (eg, opioids for pain management) is inadequate and unevenly distributed. This article describes current global disparities in the availability of palliative care. We make the case for international prioritization of palliative care as a critical strategy for improving outcomes for people with cancer and their caregivers worldwide.

Development of a health information technology-based data system in community-based hospice and palliative care.

BACKGROUND: Few hospice and palliative care organizations use health information technology (HIT) for data collection and management; the feasibility and utility of a HIT-based approach in this multi-faceted, interdisciplinary context is unclear. PURPOSE: To develop a HIT-based data infrastructure that serves multiple hospice and palliative care sites, meeting clinical and administrative needs with data, technical, and analytic support. METHODS: Through a multi-site academic/community partnership, a data infrastructure was collaboratively developed, pilot-tested at a community-based site, refined, and demonstrated for data collection and preliminary analysis. Additional sites, which participated in system development, became prepared to contribute data to the growing aggregate database. RESULTS: Electronic data collection proved feasible in community-based hospice and palliative care. The project highlighted "success factors" for implementing HIT in this field: engagement of site-based project "champions" to promote the system from within; involvement of stakeholders at all levels of the organization, to promote culture change and buy-in; attention to local needs (e.g., data for quality reporting) and requirements (e.g., affordable cost, efficiency); consideration of practical factors (e.g., potential to interfere with clinical flow); provision of adequate software, technical, analytic, and statistical support; availability of flexible HIT options (e.g., different data-collection platforms); and adoption of a consortium approach in which sites can support one another, learn from each others' experiences, pool data, and benefit from economies of scale. CONCLUSIONS: In hospice and palliative care, HIT-based data collection/management has potential to generate better understanding of populations and outcomes, support quality assessment/quality improvement, and prepare sites to participate in research.

Management of dyspnea within a rapid learning healthcare model.

PURPOSE OF REVIEW: This review addresses a distressing symptom experienced by many palliative care patients, for which available interventions have been only partially effective. A new model of healthcare delivery and research - rapid learning healthcare - provides a potential framework for improving clinical care for and outcomes of dyspnea. This review places dyspnea management in palliative care within the new systems approach offered by rapid learning healthcare. RECENT FINDINGS: Results of important studies in dyspnea are briefly presented, though the focus of this review is on evidence supporting implementation of a rapid learning model for palliative symptom management. Recent findings suggest that a rapid learning system is feasible and acceptable to patients with advanced illness, helps monitor symptoms over time, facilitates study of the impact of novel interventions, and can identify unrecognized needs and concerns. SUMMARY: A rapid learning model could improve comprehensive assessment, timeliness of intervention, accrual of data to support best practice, and tailoring of care to patients' needs as their disease and experiences change over time. Data collected in the process of routine care in a rapid learning model can simultaneously function as clinical information and a resource for research on patient-centered experiences and outcomes.

Correlates of quality of life-related outcomes in breast cancer patients participating in the Pathfinders pilot study.

OBJECTIVE: In a pilot study, participation in the Pathfinders program was associated with reductions in distress and despair and improvements in quality of life (QOL) among advanced breast cancer patients. This study explores the relationship between psychosocial resources invoked through the Pathfinders intervention and outcomes. METHODS: Advanced breast cancer patients were enrolled in a prospective, single-arm, pilot study of the Pathfinders psychosocial program. Participants met at least monthly with a licensed clinical social worker who administered the Pathfinders intervention, which focused on strengthening adaptive coping skills, identifying inner strengths, and developing a self-care plan. Longitudinal assessments over 6 months used validated instruments to assess changes in Pathfinders targets (coping, social support, self-efficacy, spirituality, and optimism) and outcomes (distress, despair, QOL, and fatigue). Multiple linear regression models examined the joint effect of average changes in target subscales on average outcome changes, adjusted for baseline outcome scores and patient characteristics. RESULTS: Participants (n=44) were: mean age 51 (SD, 12), 20% non-Caucasian, 50% college degree, and 75% married. Improvements in active coping skills, self-efficacy, and spiritual meaning/peace significantly correlated with an improvement in despair after adjustment for demographic characteristics (all P<0.05). Improvements in social support significantly correlated with positive changes in distress (P<0.05). Gains in learned optimism independently correlated with an increase in overall QOL (P<0.01). CONCLUSIONS: In this pilot assessment, changes in pre-defined Pathfinders targets such as coping skills, social support, self-efficacy, spirituality, and optimism correlated with improvements in patient-reported outcomes.

True translational research: bridging the three phases of translation through data and behavior.

Translational medicine has yet to deliver on its vast potential. Obstacles, or "blocks," to translation at three phases of research have impeded the application of research findings to clinical needs and, subsequently, the implementation of newly developed interventions in patient care. Recent federal support for comparative effectiveness research focuses attention on the clinical relevance of already-developed diagnostic and therapeutic interventions and on translating interventions found to be effective into new population-level strategies for improving health-thereby overcoming blocks at one end of the translational continuum. At the other end, while there is a preponderance of federal funding underwriting basic science research, further improvement is warranted in translating results of basic research into clinical applications and in integrating the basic sciences into the translational continuum. With its focus on the human and interactional aspects of health, medical practice, and healthcare delivery systems, behavioral medicine, itself a component of translational medicine, can inform this process.

Supporting implementation of evidence-based behavioral interventions: the role of data liquidity in facilitating translational behavioral medicine.

The advancement of translational behavioral medicine will require that we discover new methods of managing large volumes of data from disparate sources such as disease surveillance systems, public health systems, and health information systems containing patient-centered data informed by behavioral and social sciences. The term "liquidity," when applied to data, refers to its availability and free flow throughout human/computer interactions. In seeking to achieve liquidity, the focus is not on creating a single, comprehensive database or set of coordinated datasets, nor is it solely on developing the electronic health record as the "one-stop shopping" source of health-related data. Rather, attention is on ensuring the availability of secure data through the various methods of collecting and storing data currently existent or under development-so that these components of the health information infrastructure together support a liquid data system. The value of accessible, interoperable, high-volume, reliable, secure, and contextually appropriate data is becoming apparent in many areas of the healthcare system, and health information liquidity is currently viewed as an important component of a patient-centered healthcare system. The translation from research interventions to behavioral and psychosocial indicators challenges the designers of healthcare systems to include this new set of data in the correct context. With the intention of advancing translational behavioral medicine at the local level, "on the ground" in the clinical office and research institution, this commentary discusses data liquidity from the patient's and clinician's perspective, requirements for a liquid healthcare data system, and the ways in which data liquidity can support translational behavioral medicine.

A strategy to advance the evidence base in palliative medicine: formation of a palliative care research cooperative group.

BACKGROUND: Palliative medicine has made rapid progress in establishing its scientific and clinical legitimacy, yet the evidence base to support clinical practice remains deficient in both the quantity and quality of published studies. Historically, the conduct of research in palliative care populations has been impeded by multiple barriers including health care system fragmentation, small number and size of potential sites for recruitment, vulnerability of the population, perceptions of inappropriateness, ethical concerns, and gate-keeping. METHODS: A group of experienced investigators with backgrounds in palliative care research convened to consider developing a research cooperative group as a mechanism for generating high-quality evidence on prioritized, clinically relevant topics in palliative care. RESULTS: The resulting Palliative Care Research Cooperative (PCRC) agreed on a set of core principles: active, interdisciplinary membership; commitment to shared research purposes; heterogeneity of participating sites; development of research capacity in participating sites; standardization of methodologies, such as consenting and data collection/management; agile response to research requests from government, industry, and investigators; focus on translation; education and training of future palliative care researchers; actionable results that can inform clinical practice and policy. Consensus was achieved on a first collaborative study, a randomized clinical trial of statin discontinuation versus continuation in patients with a prognosis of less than 6 months who are taking statins for primary or secondary prevention. This article describes the formation of the PCRC, highlighting processes and decisions taken to optimize the cooperative group's success.

Developing the evidence base for palliative care: formation of the Palliative Care Research Cooperative and its first trial.

The field of palliative care and hospice has gained accreditation, with a growing cadre of specialists being trained, but there is a dearth of robust research evidence to guide clinical practice. After 2 years of planning, a group of senior investigators convened in January 2010 to explore the possibility of forming a research cooperative group dedicated to advancing the evidence base in palliative care and hospice. The meeting launched the Palliative Care Research Cooperative (PCRC) with an initial national/international membership, and a plan for developing policies and procedures. Proof of the concept for the PCRC is being established through the design, conduct, and dissemination of a multi-site clinical trial targeting a consensually selected, clinically relevant research question: Should patients who are taking statins for primary or secondary prevention, and who have a prognosis of < 6 months, discontinue these medications? A core group of PCRC members have developed the flagship study for the PCRC, evaluating the discontinuation of statin medications in the palliative care setting. Using the proposed trial as a case study, we underscore several approaches to overcoming common research challenges in end-of-life settings, including: 1) study design, to ensure feasibility and timeliness; 2) strategies to overcome barriers to research in this population; 3) data collection and management, to reduce the burden on patients, caregivers, research personnel, and sites while maximizing quality and efficiency; and 4) agenda setting. This article describes the rationale for convening the PCRC and highlights core principles for developing the evidence base in palliative medicine.