Dio Kavalieratos

Association Between Palliative Care and Patient and Caregiver Outcomes: A Systematic Review and Meta-analysis

ImportancenThe use of palliative care programs and the number of trials assessing their effectiveness have increased.nnnObjectivenTo determine the association of palliative care with quality of life (QOL), symptom burden, survival, and other outcomes for people with life-limiting illness and for their caregivers.nnnData SourcesnMEDLINE, EMBASE, CINAHL, and Cochrane CENTRAL to July 2016.nnnStudy SelectionnRandomized clinical trials of palliative care interventions in adults with life-limiting illness.nnnData Extraction and SynthesisnTwo reviewers independently extracted data. Narrative synthesis was conducted for all trials. Quality of life, symptom burden, and survival were analyzed using random-effects meta-analysis, with estimates of QOL translated to units of the Functional Assessment of Chronic Illness Therapy-palliative care scale (FACIT-Pal) instrument (range, 0-184 [worst-best]; minimal clinically important difference [MCID], 9 points); and symptom burden translated to the Edmonton Symptom Assessment Scale (ESAS) (range, 0-90 [best-worst]; MCID, 5.7 points).nnnMain Outcomes and MeasuresnQuality of life, symptom burden, survival, mood, advance care planning, site of death, health care satisfaction, resource utilization, and health care expenditures.nnnResultsnForty-three RCTs provided data on 12u202f731 patients (mean age, 67 years) and 2479 caregivers. Thirty-five trials used usual care as the control, and 14 took place in the ambulatory setting. In the meta-analysis, palliative care was associated with statistically and clinically significant improvements in patient QOL at the 1- to 3-month follow-up (standardized mean difference, 0.46; 95% CI, 0.08 to 0.83; FACIT-Pal mean difference, 11.36] and symptom burden at the 1- to 3-month follow-up (standardized mean difference, -0.66; 95% CI, -1.25 to -0.07; ESAS mean difference, -10.30). When analyses were limited to trials at low risk of bias (nu2009=u20095), the association between palliative care and QOL was attenuated but remained statistically significant (standardized mean difference, 0.20; 95% CI, 0.06 to 0.34; FACIT-Pal mean difference, 4.94), whereas the association with symptom burden was not statistically significant (standardized mean difference, -0.21; 95% CI, -0.42 to 0.00; ESAS mean difference, -3.28). There was no association between palliative care and survival (hazard ratio, 0.90; 95% CI, 0.69 to 1.17). Palliative care was associated consistently with improvements in advance care planning, patient and caregiver satisfaction, and lower health care utilization. Evidence of associations with other outcomes was mixed.nnnConclusions and RelevancenIn this meta-analysis, palliative care interventions were associated with improvements in patient QOL and symptom burden. Findings for caregiver outcomes were inconsistent. However, many associations were no longer significant when limited to trials at low risk of bias, and there was no significant association between palliative care and survival.

“Not the ‘Grim Reaper Service’”: An Assessment of Provider Knowledge, Attitudes, and Perceptions Regarding Palliative Care Referral Barriers in Heart Failure

Background Although similar to cancer patients regarding symptom burden and prognosis, patients with heart failure (HF) tend to receive palliative care far less frequently. We sought to explore factors perceived by cardiology, primary care, and palliative care providers to impede palliative care referral for HF patients. Methods and Results We conducted semistructured interviews regarding (1) perceived needs of patients with advanced HF; (2) knowledge, attitudes, and experiences with specialist palliative care; (3) perceived indications for and optimal timing of palliative care referral in HF; and (4) perceived barriers to palliative care referral. Two investigators analyzed data using template analysis, a qualitative technique. We interviewed 18 physician, nurse practitioner, and physician assistant providers from 3 specialties: cardiology, primary care, and palliative care. Providers had limited knowledge regarding what palliative care is, and how it can complement traditional HF therapy to decrease HF‐related suffering. Interviews identified several potential barriers: the unpredictable course of HF; lack of clear referral triggers across the HF trajectory; and ambiguity regarding what differentiates standard HF therapy from palliative care. Nevertheless, providers expressed interest for integrating palliative care into traditional HF care, but were unsure of how to initiate collaboration. Conclusions Palliative care referral for HF patients may be suboptimal due to limited provider knowledge and misperceptions of palliative care as a service reserved for those near death. These factors represent potentially modifiable targets for provider education, which may help to improve palliative care referral for HF patients with unresolved disease‐related burden.

Prevalence and Predictors of Burnout Among Hospice and Palliative Care Clinicians in the U.S.

CONTEXTnMany clinical disciplines report high rates of burnout, which lead to low quality of care. Palliative care clinicians routinely manage patients with significant suffering, aiming to improve quality of life. As a major role of palliative care clinicians involves educating patients and caregivers regarding identifying priorities and balancing stress, we wondered how clinician self-management of burnout matches against the emotionally exhaustive nature of the work.nnnOBJECTIVESnWe sought to understand the prevalence and predictors of burnout using a discipline-wide survey.nnnMETHODSnWe asked American Academy of Hospice and Palliative Medicine clinician members to complete an electronic survey querying demographic factors, job responsibilities, and the Maslach Burnout Inventory. We performed univariate and multivariate regression analyses to identify predictors of high rates of burnout.nnnRESULTSnWe received 1357 responses (response rate 30%). Overall, we observed a burnout rate of 62%, with higher rates reported by nonphysician clinicians. Most burnout stemmed from emotional exhaustion, with depersonalization comprising a minor portion. Factors associated with higher rates of burnout include working in smaller organizations, working longer hours, being younger than 50 years, and working weekends. We did not observe different rates between palliative care clinicians and hospice clinicians. Higher rated self-management activities to mitigate burnout include participating in interpersonal relationships and taking vacations.nnnCONCLUSIONSnBurnout is a major issue facing the palliative care clinician workforce. Strategies at the discipline-wide and individual levels are needed to sustain the delivery of responsive, available, high-quality palliative care for all patients with serious illness.

Palliative Care Needs of Patients With Cancer Living in the Community

PURPOSEnWith improved effectiveness of early detection and treatment, many patients with cancer are now living with advanced disease and associated symptoms. As cancer becomes a chronic illness, adequate attention to patients symptoms and psychosocial needs in the community setting requires positioning of palliative care alongside cancer care. This article describes the current palliative care needs of a population of community-dwelling patients with advanced cancer who are not yet ready for transition to hospice.nnnMETHODSnThis secondary analysis used quality-monitoring data collected in three community-based palliative care organizations. Analyses focused on people with cancer-related diagnoses who were receiving palliative care during 2008 to 2011.nnnRESULTSnThe analytic data set included 4,980 people, 10% of whom had cancer. Median age was 71 years. Forty-eight percent had been hospitalized at least once in the 6 months before palliative care referral. Forty-nine percent had a Palliative Performance Score (PPS) of 40% to 60%; 40% had PPS ≤ 30%. Although 81% had an estimated prognosis of ≤ 6 months, 58% were expected to live weeks to months. Thirty-three percent had no identified healthcare surrogate; 59% had no do-not-resuscitate order despite declining functional status and limited prognosis. Ninety-five percent reported ≥ 1 symptom, and 67% reported ≥ 3 symptoms; a substantial proportion did not receive treatment for symptoms.nnnCONCLUSIONSnPatients referred to community-based palliative care experience multiple often-severe symptoms that have been insufficiently addressed. They tend to have declining performance status. Earlier palliative care intervention could improve outcomes but will require delivery models that better coordinate inpatient/outpatient oncology and community-based palliative care.

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

BACKGROUNDnAs 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.nnnOBJECTIVEnTo characterize the unresolved symptom and treatment needs with which patients with HF and those with cancer present to PC.nnnMETHODSnWe used data from the Palliative Care Research Registry (PCRR), a repository of quality improvement data from three community-based PC organizations. We abstracted first PC visit data from the PCRR for patients with primary diagnoses of HF or cancer seen between 2008 and 2012. We assessed the association of primary diagnosis (i.e., HF or cancer) on three outcomes: unresolved symptoms, treatment gaps, and a composite indicator of symptom control and quality of life. Analyses included descriptive statistics and multivariate Poisson regression.nnnRESULTSnOur analytic sample comprised 334 patients with HF and 697 patients with cancer, the majority of whom were white and male. Compared to patients with cancer, patients with HF presented with fewer unresolved symptoms, both overall and at moderate/severe distress levels. Patients with HF more commonly reported moderately/severely distressful dyspnea (25% versus 18%, p=0.02), and more commonly experienced dyspnea-related treatment gaps (17% versus 8%, p<0.001).nnnCONCLUSIONSnPatients with HF possess care needs that are squarely within the purview of PC. Future work is needed to delineate how PC referral policies should be refined to optimize PC access for patients with HF.

Usability and Acceptability of the QDACT-PC, an Electronic Point-of-Care System for Standardized Quality Monitoring in Palliative Care

CONTEXTnFew resources exist to support collaborative quality monitoring in palliative care. These tools, if proven efficient through technology-enabled methods, may begin to routinize data collection on quality during usual palliative care delivery. Usability testing is a common approach to assess how easily and effectively users can interact with a newly developed tool.nnnOBJECTIVESnWe performed usability testing of the Quality Data Collection Tool for Palliative Care (QDACT-PC) a novel, point-of-care quality monitoring tool for palliative care.nnnMETHODSnWe used a mixed methods approach to assess community palliative care clinicians evaluations of five domains of usability. These approaches included clinician surveys after recording mock patient data to assess satisfaction; review of entered data for accuracy and time to completion; and thematic review of think aloud protocols to determine issues, barriers, and advantages to the electronic system.nnnRESULTSnWe enrolled 14 palliative care clinicians for the study. Testing the electronic system vs. paper-based methods demonstrated similar error rates and time to completion. Overall, 68% of the participants believed that the electronic interface would not pose a moderate or major burden during usual clinical activities, and 65% thought it would improve the care they provided. Thematic analysis revealed significant issues with paper-based methods alongside training needs for future participants on using novel technologies that support the QDACT-PC.nnnCONCLUSIONnThe QDACT-PC is a usable electronic system for quality monitoring in palliative care. Testing reveals equivalence with paper for data collection time, but with less burden overall for electronic methods across other domains of usability.

Understanding pharmacists’ experiences with advice-giving in the community pharmacy setting: A focus group study

OBJECTIVEnTo examine the experiences of community pharmacists providing advice about symptoms and complementary and alternative medicines (CAM).nnnMETHODSnTen licensed pharmacists and 21 student pharmacists working in community settings participated in 4 focus groups to discuss: patients questions about symptoms and CAM, comfort level providing advice, and factors prompting physician referrals. Focus group recordings were transcribed verbatim and interpreted using thematic text analysis.nnnRESULTSnPharmacists dual role as advisors and medical liaisons emerged as primary themes. Participants reported that patients often seek their advice about self-care of symptoms to delay physician visits. Participants were comfortable giving advice; lack of medical history decreased their comfort level. Most were uncomfortable recommending CAM because of the lack of regulation and evidence. Participants suggested that pharmacy curricula expand training on symptom triage, pharmacist-patient communication, and CAM to prepare graduates for employment in community settings.nnnCONCLUSIONnStudent and licensed pharmacists of this study voiced that they are often asked for advice on symptom management, but reported needing training to help provide appropriate advice to patients.nnnPRACTICE IMPLICATIONSnThe findings suggest that training strategies could help pharmacists appropriately triage and advise patients seeking self-care advice for their symptoms in the community setting.

Nursing Home Provider Perceptions of Telemedicine for Reducing Potentially Avoidable Hospitalizations

OBJECTIVEnPotentially avoidable hospitalizations (PAHs) of nursing home (NH) residents are common, costly, and can have significant economic consequences. Telemedicine has been shown to reduce emergency department and hospitalization of NH residents, yet adoption has been limited and little is known about providers perceptions and desired functionality for a telemedicine program. The goal of this study was to survey a nationally representative sample of NH physicians and advanced practice providers to quantify provider perceptions and desired functionality of telemedicine in NHs to reduce PAHs.nnnDESIGN/SETTING/PARTICIPANTS/MEASUREMENTnWe surveyed physicians and advanced practice providers who attended the 2015 AMDA-The Society for Post-Acute and Long-Term Care Medicine Annual Conference about their perceptions of telemedicine and desired attributes of a telemedicine program for managing acute changes of condition associated with PAHs.nnnRESULTSnWe received surveys from 435 of the 947 conference attendees for a 45.9% response rate. Providers indicated strong agreement with the potential for telemedicine to improve timeliness of care and fill existing service gaps, while disagreeing most with the ideas that telemedicine would reduce care effectiveness and jeopardize resident privacy. Responses indicated clear preferences for the technical requirements of such a program, such as high-quality audio and video and inclusion of an electronic stethoscope, but with varying opinions about who should be performing the consults.nnnCONCLUSIONnAmong NH providers, there is a high degree of confidence in the potential for a telemedicine solution to PAHs in NHs, as well as concrete views about features of such a solution. Such consensus could be used to drive an approach to telemedicine for PAHs in NHs that retains the theoretical strengths of telemedicine and reflects the needs of facilities, providers, and patients. Further research is needed to objectively study the impact of successful telemedicine implementations on patient, provider, and economic outcomes.

Palliative Care in Heart Failure: Rationale, Evidence, and Future Priorities

Patients with heart failure (HF) and their families experience stress and suffering from a variety of sources over the course of the HF experience. Palliative care is an interdisciplinary service and an overall approach to care that improves quality of lifexa0and alleviates suffering for those living with serious illness, regardless of prognosis. In this review, we synthesize the evidence from randomized clinical trials of palliative care interventions in HF. While the evidence base for palliative care in HF is promising, it is still in its infancy and requires additional high-quality, methodologically sound studies to clearly elucidate the role of palliative care for patients and families living with the burdens of HF. Yet, an increase in attention to primary palliative care (e.g., basic physical and emotional symptom management, advance care planning), provided by primary care and cardiology clinicians, may be a vehicle to address unmet palliative needs earlier and throughout the illnessxa0course.

The palliative care needs of patients with idiopathic pulmonary fibrosis: A qualitative study of patients and family caregivers

Objectives To explore the perceptions of palliative care (PC) needs in patients with idiopathic pulmonary fibrosis (IPF) and their caregivers. Background IPF carries a poor prognosis with most patients succumbing to their illness at a rate comparable to aggressive cancers. No prior studies have comprehensively explored perceptions of PC needs from those currently living with the disease, caring for someone living with the disease, and who cared for a deceased family member. Methods Thematic analysis of focus group content was obtained from thirteen participants. Results Four themes described frustration with the diagnostic process and education received, overwhelming symptom burden, hesitance to engage in advance care planning, and comfort in receiving care from pulmonary specialty center because of resources. Conclusions Findings support that patients and caregivers have informational needs and high symptom burden, but limited understanding of the potential benefits of PC. Future studies are needed to identify optimal ways to introduce early PC.