Accountable and Transparent Palliative Quality Measures Will Improve Care.

How do we build on the proven successes of hospice and palliative care and build clinical programs to serve those who need it in the context of real-world health care? Experiences with glide pathways have clearly shown that changes in financial incentives must always be implemented with counterbalancing measures that ensure that seriously ill patients are getting high-quality care consistent with their goals and values. There are quality measures for quality improvement and there are quality measures for accountability or transparency. We must balance any financial incentives with concrete quality measures that act as a check and balance to the care that is being provided. This area of investigation is rich in opportunity. Much research is needed to advance the craft of hospice and palliative care if the field is to move forward at scale in a timely manner. We need to democratize research and engage both "small r" and a "big R" researchers in the manner of other subspecialties such as oncology and cardiology. Future research should focus on building innovative systems and models of care to uncover needs of seriously ill patients and their caregivers and effectively cater to those needs.

A Systematized Approach to Advancing the Quality of Community-Based Palliative Care.

Despite growing recognition of the importance of community-based palliative care, optimizing the use of services continues to be a challenge. Until recently, key barriers were reimbursement and limited access. As services have become increasingly available, engagement of patients and their caregivers has emerged as a major obstacle. The Palliative Activation SystemTM (PAS) is a comprehensive, quality improvement methodology designed to promote enhanced engagement of seriously ill adults and their caregivers in optimizing the use of community-based palliative care services and accelerate clinicians' progress in meeting patients' and caregivers' care goals. This paper describes the design of the PAS. Experts in patient engagement and the development and evaluation of palliative care programs advised organizational leaders in the development of this methodology. The "Patient and Family Engagement" framework proposed by Carman and colleagues (2013) guided this work. The framework informed the selection of three core concepts-care alignment, illness trajectory, and social determinants of health-as foundational to the goals of the PAS. Additionally, this framework guided the selection of measures that will be used to assess progress in achieving enhanced engagement. This background work, coupled with findings from interviews with patients and caregivers who are current recipients of palliative care services, resulted in the implementation and ongoing testing of strategies targeting clinicians and organizational leaders and designed to enhance engagement. Lessons learned from the design phase of the PAS will advance the efforts of other organizations committed to increasing patient and caregiver engagement and enhancing attainment of their goals.

Polypharmacy, Medication Possession, and Deprescribing of Potentially Non-Beneficial Drugs in Hospice Patients.

Patients frequently have comorbidities that when combined with their primary diagnosis qualifies the patient for hospice. Consequently, patients are at risk for polypharmacy due to the number of medications prescribed to treat both the underlying conditions and the related symptoms. Polypharmacy is associated with negative consequences, including increased risk for adverse drug events, drug-drug and drug-disease interactions, reduced functional status and falls, multiple geriatric syndromes, medication nonadherence, and increased mortality. Polypharmacy also increases the complexity of medication management for caregivers and contributes to the cost of prescription drugs for hospices and patients. Deprescribing or removing nonbeneficial or ineffective medications can reduce polypharmacy in hospice. We study medication possession ratios and rates of deprescribing of commonly prescribed but potentially nonbeneficial classes of medication using a large hospice pharmacy database. Prevalence of some classes of potentially inappropriate medications is high. We report possession ratios for 10 frequently prescribed classes, and, because death and prescription termination are competing events, we calculate prescription termination rates using Cumulative Incidence Functions. Median duration of antifungal and antiviral medications is brief (5 and 7 days, respectively), while statins and diabetes medications have slow discontinuance rates (median termination durations of 93 and 197 days). Almost all patients with a proton pump inhibitor prescription have the drug for their entire hospice stay. Data from this study identify those drug classes that are commonly deprescribed slowly, suggesting drug classes and diagnoses that hospices may wish to focus on more closely, as they act to limit polypharmacy and reduce prescription costs.

A Survey of Hospice Professionals Regarding Medical Cannabis Practices.

Introduction: With medical cannabis (MC) remaining illegal at the federal level, hospice programs are unsure how to handle requests for MC, particularly since hospice is largely funded with federal dollars. The purpose of this survey was to determine respondents' comfort level with MC use in hospice, what processes and logistics hospice programs are employing when dealing with MC, and to determine what, if any, education hospice programs are providing to their staff. Methods: An anonymous online survey assessed a variety of factors surrounding hospice staff practice, experience, and opinions regarding MC. The survey was disseminated to employees of clients of a large hospice benefit manager as well as through a national hospice and palliative medicine professional organization. Results: Three hundred ten hospice professionals responded to the survey. More than half of the respondents were nurses followed by administrators and physicians. Regardless of legal status, hospice staff members were overwhelmingly in agreement that MC is appropriate for hospice patients to have access to and use. Several barriers to use were identified including discordant legal status between state and federal governments, concerns about clinical efficacy and safety, and a myriad of other societal factors. Wide variations in MC documentation and education practices between hospices were noted. Discussion: The data suggest overwhelming support for MC use in the hospice setting. Our findings highlight important opportunities to support hospice providers and their patients through education and the development of policies around MC.

Effects of a Population Health Community-Based Palliative Care Program on Cost and Utilization.

Background: New population health community-based models of palliative care can result in more compassionate, affordable, and sustainable high-quality care. Objectives: We evaluated utilization and cost outcomes of a standardized, population health community-based palliative care program provided by nurses and social workers. Design: We conducted a retrospective propensity-adjusted study to quantify cost savings and resource utilization associated with a community-based palliative care program. We analyzed claims data from a Medicare Advantage (MA) plan and used a proprietary predictive model to identify 804 members at high risk for overmedicalized end-of-life care. We enrolled 204 members in the palliative care program and compared them with 600 who received standard, telephonic, health plan case management. We excluded members with fewer than two months of enrolled experience or those with insufficient data for analysis, leaving 176 members in the study group and 570 in the control group for evaluation. We compared differences in utilization and costs (medical and pharmacy), hospital admissions, bed days (acute and intensive care unit [ICU]), and emergency department visits. Setting/Subjects: A 30,000-member MA plan and a health system in Central Ohio between October 2015 and June 2016. Results: Members who received community-based palliative care showed a statistically significant 20% reduction in total medical costs ($619 per enrolled member per month), 38% reduction in ICU admissions, 33% reduction in hospital admissions, and 12% reduction in hospital days. Conclusion: A structured nurse and social work model of community-based palliative care using a predictive model to identify MA candidates for intervention can reduce utilization and medical costs.

Medicare Cost at End of Life.

As the Medicare program struggles to control expenditures, there is increased focus on opportunities to manage patient populations more efficiently and at a lower cost. A major source of expense for the Medicare program is beneficiaries at end of life. Estimates of the percentage of Medicare costs that arise from patients in the last year of life differ, ranging from 13% to 25%, depending on methods and assumptions. We analyze the most recently available Medicare Limited Data Set to update prior studies of end-of-life costs and examine different methods of performing this calculation. Based upon these findings, we conclude that higher estimates that take into account the spending over the 12 months leading up to death more accurately reflect the full cost of a patient's last year of life. Comparing current year costs of decedents with Medicare's current year costs understates the full budgetary impact of end-of-life patients. Because risk-taking entities such as Medicare Advantage plans and Accountable Care Organizations (ACOs) need to reduce costs while improving the quality of care, they should initiate programs to better manage the care of patients with serious or advanced illness. We also calculate costs for beneficiaries dying in different settings and conclude that more effective use of palliative care and hospice benefits offers a lower cost, higher quality alternative for patients at end of life.

International study of a continence device with 12-hour wear times.

This international, phase III, 215-day, open-label, non-randomized, multicentre study assessed the safety and efficacy of 12-hour wear times with a novel colostomy continence control device in participants with end colostomies. Study stages were usual pouching (21 days), wafer transition (14 days), device 'ramp-up' for 4, 6, and 8 hours (21 days), and 12-hour device wear (159 days). Of the 78 participants enrolled, 66 wore at least one device, and 45 completed treatment. Median device wear time was 11 hours per day during the final stage. Adverse events were reported by 12%, 7%, and 56% of participants during the usual pouching stage (0.01 events per participant per day), wafer transition stage, and device-wear stages (0.01 events per participant per day), respectively. No detrimental effects were seen on stoma vascularity or the normal gastrointestinal flora. The daily leakage-free rate was 0.89 for any leakage and 0.93 for type 2 leakage (e.g. not contained under the wafer). Most participants (87%) rated the ability of the device to restore continence as 'good' or 'very good'. Overall, the study showed that the continence control device was safe and effective for wear times up to 12 hours per day in colostomy patients.

Safety and efficacy of a novel continence device in colostomy patients.

PURPOSE: This study aimed to assess the safety and efficacy of a novel colostomy continence device. METHODS: This phase II, 142-day, open-label, nonrandomized, multicenter study enrolled patients who had end colostomies for ≥3 months. Study stages were usual pouching (21 days), wafer transition (14 days), and the device (107 days). During device wear, up to 8 hours per day, patients recorded the following outcomes in daily diaries: skin condition (if the wafer was changed); stoma color, moisture, and physical condition; and gastrointestinal symptoms. RESULTS: Of the 26 patients enrolled, 25 wore at least one device. The device was worn on 96% of study days and a mean of 6.8 hours per day. Adverse events were reported by 1 patient during the usual pouching 21-day period, by 5 patients during the wafer transition 14-day period, and by 15 patients during the device wear 107-day period. Stoma color and moisture were within normal range on all daily assessments. The device did not affect microbiology or vascularity. During device wear, patients had no unusual gastrointestinal symptoms or odor on >99% and 80% of days, respectively. The mean number of leaks per patient-month was 1.2 with usual pouching, 4.2 with the device overall, and 2.1 during the last 3 weeks with the device, suggesting a learning curve. Approximately 65% of patients preferred the device to usual pouching at the end of study. CONCLUSIONS: The novel continence device was safe and effective for up to 8 hours per day in colostomy patients.

Constipation in persons receiving hospice care.

CONTEXT: Symptom burden at the end of life is incompletely understood. OBJECTIVES: To estimate the natural history of constipation and the relation of clinical and demographic characteristics to moderate or severe constipation among persons who received hospice care in the United States starting in 2005. METHODS: Data were obtained from a national provider of hospice pharmacy services and included information about the hospice organization, patient demographics and clinical characteristics, constipation intensity, and drugs prescribed. Hospice nurses assessed patients' constipation during the previous 24 hours periodically, using a 0-10 numeric rating scale (NRS; 0=no intensity and 10=worst imaginable; none [NRS 0], mild [NRS 1-3], moderate [NRS 4-6], or severe [NRS 7-10]). Regression models were constructed to identify factors associated with last reported constipation severity scores. RESULTS: Fifty thousand six hundred forty-one persons received hospice services, had at least two constipation assessments, and had complete clinical and demographic information; 55.3% of these individuals were female, 87.1% were Caucasian, and mean age was 75.9 years. Constipation was assessed a mean of four times per person; 12% of persons had moderate or severe constipation at their first or last assessment, and 19% of persons who reported moderate or severe constipation at the first assessment also had moderate or severe constipation at the last assessment. First constipation and last pain scores, having cancer, and prescription of a laxative were associated with increased likelihood of moderate or severe constipation at the last assessment. CONCLUSIONS: These data provide insight into a common and potentially distressing symptom and also may be useful as process indicators of the quality of hospice care.

A review of quality of care evaluation for the palliation of dyspnea.

Assessment and management of dyspnea has emerged as a priority topic for quality evaluation and improvement. Evaluating dyspnea quality of care requires valid, reliable, and responsive measures of the care provided to patients across settings and diseases. As part of an Agency for Healthcare Research and Quality Symposium, we reviewed quality of care measures for dyspnea by compiling quality measures identified in systematic searches and reviews. Systematic reviews identified only three existing quality measurement sets that included quality measures for dyspnea care. The existing dyspnea quality measures reported by retrospective evaluations of care assess only four aspects: dyspnea assessment within 48 hours of hospital admission, use of objective scales to rate dyspnea severity, identification of management plans, and evidence of dyspnea reduction. To begin to improve care, clinicians need to assess and regularly document patient's experiences of dyspnea. There is no consensus on how dyspnea should be characterized for quality measurement, and although over 40 tools exist to assess dyspnea, no rating scale or instrument is ideal for palliative care. The panel recommended that dyspnea assessment should include a measure of intensity and some inquiry into the associated bother or distress experienced by the patient. A simple question into the presence or absence of dyspnea would be unlikely to help guide therapy, as complete relief of dyspnea in advanced disease would not be anticipated. Additional knowledge gaps include standards for clinical dyspnea care, assessment in the cognitively impaired, and evaluation of effectiveness of dyspnea care for patients with advanced disease.

Cholinesterase inhibitor and N-methyl-D-aspartic acid receptor antagonist use in older adults with end-stage dementia: a survey of hospice medical directors.

BACKGROUND: 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. RESULTS: 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. CONCLUSIONS: 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.

Hospice use among patients with heart failure.

BACKGROUND: Hospices provide end-of-life care for heart failure (HF) patients, but hospice is underused for these patients, and its use has not been well described. METHODS: We examined hospice use among 11,754 HF and 31,228 cancer patients. These patients were either discharged from hospice or died while in hospice between January 1, 2004, and June 30, 2005. RESULTS: The percentages of patients with HF and cancer who received hospice care for /=6 months (7.6% vs 1.1%; P < .001). Patients with HF were significantly more likely to be discharged from hospice alive (19.0% vs 11.3%; P < .001), as were African Americans with HF and those who were prescribed HF medications. CONCLUSION: Our study provides detailed estimates of hospice use and identifies potential areas of hospice care that are unique to HF patients. Our findings generate hypotheses about the Medicare Hospice Benefit, specifically whether changes to the 6-month prognosis criterion for hospice eligibility would result in increased hospice use for HF patients. We hope that our results will stimulate additional studies to elucidate differences in hospice use between HF and cancer patients, including patient perspectives of hospice care and clinician referral patterns.

Acetylcholinesterase inhibitor and N-methyl-D-aspartic acid receptor antagonist use among hospice enrollees with a primary diagnosis of dementia.

OBJECTIVES: To describe acetylcholinesterase inhibitor (AChEI) and memantine use among persons over the age of 65 admitted to hospice with a primary diagnosis of dementia and identify patient and hospice program characteristics associated with the use of these agents. DESIGN: Retrospective, cross-sectional study. SETTING: Administrative database of a national hospice pharmacy provider. PARTICIPANTS: A total of 10,065 persons with end-stage dementia admitted to one of 441 U.S. hospices in 2004. MEASUREMENTS: The frequency of AChEI and memantine use was determined and utilized as the unit of analysis for bivariate and multivariate comparisons with patient and hospice program characteristics. RESULTS: Twenty-one percent (2148/10,065) of patients were prescribed AChEI and/or memantine therapy at the time of hospice enrollment. Of these, 49.5% were prescribed donepezil. Odds of receiving AChEI and/or memantine therapy were less likely if the patient was female, (odds ratio [OR] 0.68, 0.62-0.76), died while enrolled in hospice (OR 0.75, 0.67-0.85), received care at home (0.80, 0.71-0.89), or had a hospice length of stay (LOS) less than 7 days (0.53, 0.45-0.62). Patients who had a LOS of at least 60 days were significantly more likely to have received such therapies (OR 1.41 [1.24-1.60] for 61-180 days and 1.33 [1.15-1.54] for over 180 days). CONCLUSION: A notable number of hospice enrollees with a primary diagnosis of dementia were prescribed AChEI and/or NMDA receptor antagonist therapy. Studies are needed to better define the role of these agents as well as the impact of medication discontinuation in persons with end-stage dementia.

Palliative care benchmarks from academic medical centers.

INTRODUCTION: Palliative care is growing in the United States but little is known about the quality of care delivered. OBJECTIVE: To benchmark the quality of palliative care in academic hospitals. DESIGN: Multicenter, cross-sectional, retrospective chart review conducted between October 1, 2002 and September 30, 2003. SETTING: Thirty-five University HealthSystem Consortium (UHC) academic hospitals across the United States. PARTICIPANTS: A total of 1596 patient records. INCLUSION CRITERIA: (1) adults, (2) high-mortality diagnoses: selected cancers, heart failure, human immunodeficiency virus (HIV), and respiratory conditions requiring ventilator support, (3) length of stay (LOS) more than 4 days, and (4) two prior admissions in the preceding 12 months. MAIN OUTCOME MEASURES: Compliance with 11 key performance measures (KPM) derived from practice standards, literature evidence, and input from a multidisciplinary expert committee. Analyses examined relationships between provision of the KPM and specific outcomes. RESULTS: Wide variability exists among academic hospitals in the provision of the KPM (0%-100%). The greater the compliance with KPM, the greater the improvement in quality outcomes, cost and LOS. Assessment of pain (96.1%) and dyspnea (90.2%) was high, but reduction of these symptoms was lower (73.3% and 77.2%). Documentation of prognosis (33.4%), psychosocial assessment (26.2%), communication with family/patient (46%), and timely planning for discharge disposition (53.4%) were low for this severely ill population (16.8% hospital mortality). Only 12.9% received a palliative care consultation. CONCLUSIONS: The study reveals significant opportunities for improvement in the effective delivery of palliative care. Care that met KPM was associated with improved quality, reduced costs and LOS. Institutions that benchmarked above 90% did so by integrating KPM into daily care processes and utilizing systematized triggers, forms and default pathways. The presence of a formalized palliative care program within a hospital system had a positive effect on the achievement of KPM, whether or not formal consultation occurred. Hospitals need to develop systematic methods to improve access to palliative care.

Are newer, more expensive pharmacotherapy options associated with superior symptom control compared to less costly agents used in a collaborative practice setting?

Innovative approaches to care may be necessary to provide the most effective symptom management to hospice patients. One approach is prescribing newer pharmacotherapy options with the potential to improve symptom management in hospice. Such therapies are sometimes prescribed outside of Food and Drug Administration indications and are typically more costly than older agents used for the same symptoms. Another approach is the collaborative practice (CP) care model, whereby clinical pharmacists are given prescriptive authority according to evidence-based protocols and algorithms within boundaries approved by a physician. The agents typically included in CP protocols are those with wide therapeutic indices and with substantial evidence to support their use. The purpose of this study was to examine both approaches to management of pain, insomnia, and nausea, comparing symptom scores for those patients who received noncollaborative drug therapies (transdermal fentanyl, zolpidem, and ondansetron) to those who received agents under CP (oral sustained-release opioids, temazepam, and prochlorperazine). The object of the study was to investigate outcomes associated with newer drug therapy options as compared to older agents for the management of pain, insomnia, and nausea. A secondary goal is to compare symptom outcomes for patients receiving pharmaceutical care under CP and non-CP models. The study design was retrospective with a cohort. A total of 50 patients were randomly selected for each cohort of the pain and insomnia study arms. Only 45 patients prescribed oral ondansetron met inclusion criteria for the nausea group; 45 patients prescribed prochlorperazine were randomly selected as the comparator group. Patients were compared on their degree of response to the prescribed therapy. Response was classified as complete, partial, no improvement from baseline, worsened, or unknown. A complete response was defined as the symptom score improving to a 0 of 10, regardless of the previous value documented. A partial response was defined as any improvement in score that did not result in a 0 of 10. No improvement from baseline reflected a lack of overall change in score throughout the series of data points collected. A worsened response was any score found to be higher than the score documented at the time of dispense. The unknown category reflects any set of scores that had an "N/A " documented at the time of medication dispense or when documented for both attempts subsequent to dispensing the medication. A complete response was present in 14 of 50 (28 [corrected] percent) of the patients prescribed oral therapy [corrected] as compared with 12 of 50 (24 [corrected] percent) of those prescribed fentanyl [corrected] (p = .82). Responses defined as partial, no improvement over baseline, worsened, and unknown were also comparable between the two cohorts. A complete response was seen in 26 patients prescribed temazepam (52 percent), whereas only 11 (22 percent) of patients initially prescribed zolpidem achieved the same response (p = .0037). Both groups had a similar distribution of partial, no improvement over baseline, and worsened responses. For the nausea arm of the study, a difference was found in the number of complete responses, favoring prochlorperazine (22 of 45, 48.9 percent for prochlorperazine, 12 of 45, 26.7 percent for ondansetron, p = .0504), as well as an increased number of worse responses seen with ondansetron patients (p = .0513); however, neither difference was statistically significant. Newer pharmacotherapy options for the management of pain, insomnia, and nausea were not found to be superior when compared to older agents prescribed under CP.

Evaluation of an educational program for long-term care nursing assistants.

OBJECTIVES: To determine if an educational program can improve knowledge and attitude among ancillary staff on end-of-life care issues in a long-term care facility. DESIGN: A pilot study using a pre- and post-test design prior to and at the completion of an education intervention. SETTING: A long-term care facility in suburban Philadelphia that has 150 assisted living beds and 53 nursing home beds. PARTICIPANTS: Long-term care ancillary staff including certified nursing assistants (called "care managers" at this facility), social workers, recreational therapists, and food service workers. INTERVENTION: The intervention was a novel educational program consisting of five in-service lectures with accompanying take home self-study modules for ancillary staff in long-term care entitled "Dignity in Dementia." MEASUREMENTS: Ancillary staff attitudes and knowledge on end-of-life issues in dementia were assessed with a knowledge and attitude questionnaire pre- and post-intervention. One-year follow-up questionnaires were administered to assess long-term maintenance of knowledge and attitude changes. RESULTS: Thirty-two ancillary staff completed the pre-intervention questionnaires. Twenty-nine ancillary staff completed the post-intervention questionnaires (90.6%). There was a significant change in the end-of-life knowledge level of the ancillary staff (P =.0270). Specifically, there was a significant change in one question dealing with dementia as a terminal disease (P = .006). There were also significant changes in the average attitude scores of the ancillary staff. (P = .0242). One-year follow-up revealed that both knowledge and attitude changes were maintained. CONCLUSIONS: This pilot project demonstrates that a staff educational program on end-of-life care for dementia residents can improve end-of-life knowledge and attitudes among long-term care ancillary staff and that this improvement can be maintained for up to 1 year. This intervention is easily reproducible in the long-term care setting. This project is an important step in helping improve end-of-life care for dementia residents in long-term care settings by improving the knowledge and attitudes of their caregivers.

Experience with hospice: reflections from third-year medical students.

Nationally, there is a growing emphasis on experiential education and an interest in palliative care for health professionals. Hospice visits were added to the family medicine community rotation for third-year medical students to provide them with first-hand exposure to the hospice experience. Seven significant themes emerged from the students' reflection papers: (1) the value of hospice and the supportive role of the hospice team, (2) the value of empathy, (3) the distinction between acceptance and resignation, (4) the changing face of hope, (5) an understanding of death as a natural event, (6) the quality of family caregiving, and (7) the role of the physician in caring for the dying. The implications for medical education discussed include the value of home visits as a setting for experiences in palliative care and the effectiveness of narrative assignments for encouraging student reflection.