Ronit Elk

Systematic Review of Palliative Care in the Rural Setting

BACKGROUND Many of the worlds population live in rural areas. However, access and dissemination of the advances taking place in the field of palliative care to patients living in rural areas have been limited. METHODS We searched 2 large databases of the medical literature and found 248 relevant articles; we also identified another 59 articles through networking and a hand search of reference lists. Of those 307 articles, 39 met the inclusion criteria and were grouped into the following subcategories: intervention (n = 4), needs assessment (n = 2), program planning (n = 3), program evaluation (n = 4), education (n = 7), financial (n = 8), and comprehensive/systematic literature reviews (n = 11). RESULTS We synthesized the current state of rural palliative care research and practice to identify important gaps for future research. Studies were conducted in the United States, Australia, Canada, Africa, Sweden, and India. Two randomized control trials were identified, both of which used telehealth approaches and had positive survival outcomes. One study demonstrated positive patient quality of life and depression outcomes. CONCLUSIONS Research to guide rural palliative care practice is sparse. Approaches to telehealth, community- academic partnerships, and training rural health care professionals show promise, but more research is needed to determine best practices for providing palliative care to patients living in rural settings.

Concordance of Advance Care Plans With Inpatient Directives in the Electronic Medical Record for Older Patients Admitted From the Emergency Department

CONTEXT Measuring What Matters identified quality indicators to examine the percentage of patients with documentation of a surrogate decision maker and preferences for life-sustaining treatments. OBJECTIVES To determine the rate of advance care planning in older adults presenting to the emergency department (ED) and translation into medical directives in the electronic medical record (EMR). METHODS A convenience sample of adults 65 years or older was recruited from a large urban ED beginning in January 2012. We administered a baseline interview and survey in English or Spanish, including questions about whether patients had a documented health care proxy or living will. For patients admitted to the hospital who had a health care proxy or living will, chart abstraction was performed to determine whether their advance care preferences were documented in the EMR. RESULTS From February 2012 to May 2013, 53.8% (367 of 682) of older adults who completed the survey in the ED reported having a health care proxy, and 40.2% (274 of 682) had a living will. Of those admitted to the hospital, only 4% (4 of 94) of patients who said they had a living will had medical directives documented in the EMR. Similarly, only 4% (5 of 115) of patients who had a health care proxy had the persons name or contact information documented in their medical record. CONCLUSION About half of the patients 65 years or older arriving in the ED have done significant advance care planning, but most plans are not recorded in the EMR.

Adherence to Measuring What Matters Measures Using Point-of-Care Data Collection Across Diverse Clinical Settings

CONTEXT Measuring What Matters (MWM) for palliative care has prioritized data collection efforts for evaluating quality in clinical practice. How these measures can be implemented across diverse clinical settings using point-of-care data collection on quality is unknown. OBJECTIVES To evaluate the implementation of MWM measures by exploring documentation of quality measure adherence across six diverse clinical settings inherent to palliative care practice. METHODS We deployed a point-of-care quality data collection system, the Quality Data Collection Tool, across five organizations within the Palliative Care Research Cooperative Group. Quality measures were recorded by clinicians or assistants near care delivery. RESULTS During the study period, 1989 first visits were included for analysis. Our population was mostly white, female, and with moderate performance status. About half of consultations were seen on hospital general floors. We observed a wide range of adherence. The lowest adherence involved comprehensive assessments during the first visit in hospitalized patients in the intensive care unit (2.71%); the highest adherence across all settings, with an implementation of >95%, involved documentation of management of moderate/severe pain. We observed differences in adherence across clinical settings especially with MWM Measure #2 (Screening for Physical Symptoms, range 45.7%-81.8%); MWM Measure #5 (Discussion of Emotional Needs, range 46.1%-96.1%); and MWM Measure #6 (Documentation of Spiritual/Religious Concerns, range 0-69.6%). CONCLUSION Variations in clinician documentation of adherence to MWM quality measures are seen across clinical settings. Additional studies are needed to better understand benchmarks and acceptable ranges for adherence tailored to various clinical settings.

Culture and Palliative Care: Preferences, Communication, Meaning, and Mutual Decision Making

Palliative care is gaining acceptance across the world. However, even when palliative care resources exist, both the delivery and distribution of services too often are neither equitably nor acceptably provided to diverse population groups. The goal of this study was to illustrate tensions in the delivery of palliative care for diverse patient populations to help clinicians to improve care for all. We begin by defining and differentiating culture, race, and ethnicity, so that these terms-often used interchangeably-are not conflated and are more effectively used in caring for diverse populations. We then present examples from an integrative literature review of recent research on culture and palliative care to illustrate both how and why varied responses to pain and suffering occur in different patterns, focusing on four areas of palliative care: the formation of care preferences, communication patterns, different meanings of suffering, and decision-making processes about care. For each area, we provide international and multiethnic examples of variations that emphasize the need for personalization of care and the avoidance of stereotyping beliefs and practices without considering individual circumstances and life histories. We conclude with recommendations for improving palliative care research and practice with cultural perspectives, emphasizing the need to work in partnerships with patients, their family members, and communities to identify and negotiate culturally meaningful care, promote quality of life, and ensure the highest quality palliative care for all, both domestically and internationally.

The potential of palliative care for patients with respiratory diseases

Based on the demonstrated effectiveness of palliative care in the alleviation of symptoms and enhancement of life quality, it is important to incorporate palliative care early in the respiratory disease trajectory. Quality palliative care addresses eight domains that are all patient and family centred. Palliative care interventions in respiratory conditions include management of symptoms such as dyspnoea, cough, haemoptysis, sputum production, fatigue and respiratory secretion management, especially as the end-of-life nears. A practical checklist of activities based on the domains of palliative care can assist clinicians to integrate palliative care into their practice. Clinical management of patients receiving palliative care requires consideration of human factors and related organisational characteristics that involve cultural, educational and motivational aspects of the patient/family and clinicians. Educational aims To explain the basic domains of palliative care applicable to chronic respiratory diseases. To review palliative care interventions for patients with chronic respiratory diseases. To outline a checklist for clinicians to use in practice, based on the domains of palliative care. To propose recommendations for clinical management of patients receiving palliative care for chronic respiratory diseases. Early palliative care can relieve suffering and provide support for people with respiratory diseases http://ow.ly/z0Hd30jpsb4

Challenges and Recommended Solutions to End of Life Care for Lesbian, Gay, Bisexual and Transgender Patients Diagnosed with Cancer with a Life-Limiting Prognosis

There is a sizeable LGBT population for whom end of life care services are required. However, over and above the tremendous challenges that most people face at end of life, there are several significant additional obstacles that LGBT patients at end of life encounter, barriers that often prevent them from receiving appropriate end of life care.

The Implementation of Measuring What Matters in Research and Practice: Series Commentary

The Measuring What Matters (MWM) initiative identified 10 indicators of high-quality palliative and hospice care. Members of the AAHPM Research Committee, through a special series of articles, examined applications of the MWM quality indicators in research and practice settings. Many themes were present in these articles, including the important role of electronic health records in quality measurement, challenges and strategies for implementing and tracking measures over time, and the importance of identifying new measures. This article is the final commentary of the series and includes recommendations for next steps in quality measurement.

The Challenges Remain: Needed Next Steps in Alleviating the Burden of Cancer in the LGBT Community

Recently, there have been significant improvements in federal policy that have positively impacted many aspects of healthcare for LGBT patients and their families. Despite this, significant challenges remain. In order to improve outcome and survival in the LGBT community, as well as to reduce suffering in LGBT patients and families, there are steps that we as a community and society need to take. In this chapter we focus on these obstacles and the necessary action steps.