Hospice Use Among Patients with Heart Failure

Despite its many benefits, hospice care is underused for patients with heart failure. This paper discusses the factors contributing to this underuse and offers recommendations to optimise use for patients with heart failure and proposes metrics to optimise quality of hospice care for this patient group

Adherence to

(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.To evaluate the implementation of MWM measures by exploring documentation of quality measure adherence across six diverse clinical settings inherent to palliative care practice.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.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%).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

Usability of PCforMe in Patients With Advanced Cancer Referred to Outpatient Palliative Care: Results of a Randomized, Active-Controlled Pilot Trial

Context. Low utilization of palliative care services warrant testing of new solutions to educate and engage patients around the benefits of palliative care. Objectives. We sought out to develop and test a novel, mobile health solution to prepare patients for an upcoming outpatient palliative care appointment. Methods. After developing a web-based tool called PCforMe (Palliative Care for Me), we conducted a randomized, active controlled, trial of PCforMe. The primary outcome was the score on the System Usability Scale (SUS). Secondary outcomes were patient self-efficacy and change in knowledge. We compared PCforMe to three common online resources for patients seeking information about palliative care. Results. A total of 80 patients were randomized. There were no significant demographic differences. Mean SUS score for PCforMe was 78.2, significantly above the normative average SUS score of 68 (P-value < 0.0001). Mean change in Perceived Efficacy in Patient-Physician Interactions score was -2.2 for PCforMe and -1.7 for control group (P-value ¼ 0.72). Preparedness for an upcoming palliative care visit increased 50% in the intervention group and 13.3% in the control group. Difference in the number of patients with improved knowledge regarding palliative care approached significance (P = 0.06). Lastly, we found that the no-show rate was lower during Q1 2017 (during trial) and Q1 2016 (before trial), at 11.7% and 21%, respectively (P < 0.05). Comparing the full calendar year (CY) 2016 with 2017, we did not find a statistical difference (CY 2016 of 18.8% and 15% in CY 2017; P = 0.22). Conclusion. PCforMe is a usable mobile health tool to prepare patients for an upcoming palliative care appointment. Further research is needed to test effectiveness

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

Dyspnea Review for the Palliative Care Professional: Assessment, Burdens, and Etiologies

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

Usability Testing of an Electronic Patient-Reported Outcome System for Survivors of Critical Illness

BACKGROUND: Web-based electronic patient-reported outcomes (ePRO) measures are increasingly used to facilitate patient-centered health assessments. However, it is unknown if ePRO completion is feasible for recently ill intensive care unit (ICU) survivors and their families. OBJECTIVE: To develop and evaluate the usability of a novel ePRO system (ePRO to Support People and Enhance Recovery [ePROSPER]) among ICU survivors and their families within an ongoing clinical trial. METHODS: Paper-based PROs were iteratively adapted to electronic forms (ePROs). Then, the usability of ePROSPER was assessed among 60 patients, their family members, and PRO and programming experts via questionnaires (eg, Systems Usability Scale), "think aloud" open-ended feedback, task completion times, and error rates. RESULTS: Input from patients and their families was used to incorporate user-experience modifications into ePROSPER. This feedback also led to inclusion of automated reminders for questionnaire completion and real-time alerts for staff triggered by high symptom levels. Median usability scores increased over testing cycles from 40 to 73 to 95, nearing the maximum score and showing excellent usability. All users completed ePROSPER within 20 minutes; 87% preferred it to a written version. ePROSPER was then implemented in a clinical trial without data errors. CONCLUSIONS: Automated ePRO systems can be successfully integrated in a post-ICU clinical trial setting. The value of integrating such systems in direct clinical care should be assessed in future studies

The Quality Imperative for Palliative Care

Palliative medicine must prioritize the routine assessment of the quality of clinical care we provide. This includes regular assessment, analysis, and reporting of data on quality. Assessment of quality informs opportunities for improvement and demonstrates to our peers and ourselves the value of our efforts. In fact, continuous messaging of the value of palliative care services is needed to sustain our discipline; this requires regularly evaluating the quality of our care. As the reimbursement mechanisms for health care in the United States shift from fee-for-service to fee-for-value models, palliative care will be expected to report robust data on quality of care. We must move beyond demonstrating to our constituents (including patients and referrers), “here is what we do,” and increase the focus on “this is how well we do it” and “let’s see how we can do it better.” It is incumbent on palliative care professionals to lead these efforts. This involves developing standardized methods to collect data without adding additional burden, comparing and sharing our experiences to promote discipline-wide quality assessment and improvement initiatives, and demonstrating our intentions for quality improvement on the clinical frontline

Comparing Unmet Needs between Community-Based Palliative Care Patients with Heart Failure and Patients with Cancer

Background: As the role of palliative care (PC) has yet to be clearly defined in patients with heart failure (HF), such patients may face barriers regarding PC referral. In order to maximally meet the needs of HF patients, it is necessary to understand how they compare to the classic PC population: patients with cancer