Abstract Background Despite increasing interest in advance care planning (ACP) and prior ACP descriptions, a consensus definition does not yet exist to guide clinical, research, and policy ...initiatives. Objective To develop a consensus definition of ACP for adults. Design Delphi Panel Setting/Participants Participants included a multidisciplinary panel of international ACP experts consisting of 52 clinicians, researchers, and policy leaders from 4 countries, and a patient/surrogate advisory committee. Measurements We conducted 10 rounds of a modified Delphi method and qualitatively analyzed panelists’ input. Panelists identified several themes lacking consensus, and iteratively discussed and developed a final consensus definition. Results Panelists identified several tensions concerning ACP concepts such as whether the definition should focus on conversations vs. written advance directives; patients’ values vs. treatment preferences; current shared decision making vs. future medical decisions; and who should be included in the process. The panel achieved a final consensus one-sentence definition and accompanying goals statement: “Advance care planning is a process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future medical care. The goal of advance care planning is to help ensure that people receive medical care that is consistent with their values, goals and preferences during serious and chronic illness.” The panel also described strategies to best support adults in ACP. Conclusions A multidisciplinary Delphi panel developed a consensus definition for ACP for adults that can be used to inform implementation and measurement of ACP clinical, research, and policy initiatives.
Abstract Context Patients with advanced illness are prescribed multiple medications in the last year of life, intensifying the risk of negative consequences related to polypharmacy. Objectives To ...describe the medication burden of patients near the end of life and identify potential areas for improvement in clinician prescribing practices. Methods This was a prespecified secondary analysis of data from a prospective trial. Eligible participants were adults with less than 12 months estimated prognosis taking a statin medication for primary prevention of cardiovascular disease. Participants were enrolled from 15 sites, randomized to continue or discontinue statin medications, and followed for up to a year. Concomitant medications were recorded at least monthly from study enrollment through death. Prescribed medications were categorized by class and subclass. Descriptive statistics were calculated. Results On average, participants ( n = 244) were 74.3 years old (SD 11.5) and lived 264 days (SD 128); 47.5% of the patients had a primary diagnosis of malignant tumor. This population was exposed to medications across 51 classes, 192 subclasses, and 423 individual medications. Patients took an average of 11.5 (SD 5) medications at the time of enrollment and 10.7 (SD 5) medications at death or study termination. The five most common classes of medications prescribed near the end of life were antihypertensives, broncholytics/bronchodilators, laxatives, antidepressants, and gastric protection agents. Conclusion There is a significant medication burden placed on patients with advanced illness. Although most medications were prescribed for supportive care, we observed a high prevalence of medications for managing non–life-threatening comorbidities.
Abstract Background Little is known about symptoms and their burden in outpatients with chronic heart failure. Diverse symptoms may be associated with poor heart failure-related quality of life, and ...depression may be related to increased symptoms. Methods and Results The number of symptoms and symptom distress (physical symptoms on the Memorial Symptom Assessment Scale-Short Form), depression (Geriatric Depression Scale-Short Form), and heart failure-related quality of life (Kansas City Cardiomyopathy Questionnaire) were measured cross-sectionally in 60 patients with heart failure from two outpatient cardiology clinics. Patients experienced a mean of nine symptoms in the previous week. More than half reported shortness of breath, lack of energy, pain, feeling drowsy, or dry mouth. In unadjusted analyses, more severe depression was associated with a greater number of symptoms ( r = 0.51, P < .0001) and greater overall symptom distress ( r = 0.58, P < .0001). For each additional depression symptom, the number of symptoms reported increased by 0.6 after adjustment for age, race, and N-terminal pro-brain natriuretic peptide ( P = .01). The number of symptoms accounted for 32% of the variance in quality of life ( P < .0001). Conclusions Patients with heart failure report a large number of distressing symptoms. Depression in patients with heart failure is associated with a greater number of symptoms, which in turn is associated with a decrease in heart failure-related quality of life. Treatment of depression and the diverse symptoms reported by patients with heart failure might significantly improve quality of life.
Abstract 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.
Abstract Palliative care has faced moral and ethical challenges when conducting research involving human subjects. There are currently no resources to guide institutional review boards (IRBs) in ...applying standard ethical principles and terms—in a specific way—to palliative care research. Using as a case study a recently completed multisite palliative care clinical trial, this article provides guidance and recommendations for both IRBs and palliative care investigators to facilitate communication and attain the goal of conducting ethical palliative care research and protecting study participants while advancing the science. Beyond identifying current challenges faced by palliative care researchers and IRBs reviewing palliative care research, this article suggests steps that the palliative care research community can take to establish a scientifically sound, stable, productive, and well-functioning relationship between palliative care investigators and the ethical bodies that oversee their work.
Background Patients with end-stage renal disease have high mortality and symptom burden. Past studies demonstrated that nephrologists do not feel prepared to care for their patients at the end of ...life. We sought to characterize current palliative and end-of-life care education received during nephrology fellowship and compare this with data from 2003. Study Design Cross-sectional online survey of second-year nephrology trainees. Responses were compared to a similar survey in 2003. Setting & Participants 104 US nephrology fellowship programs in 2013. Measurements Quality of training in and attitudes toward end-of-life care and knowledge and preparedness to provide nephrology-specific end-of-life care. Results Of 204 fellows included for analysis (response rate, 65%), significantly more thought it was moderately to very important to learn to provide care at end of life in 2013 compared to 2003 (95% vs 54%; P < 0.001). Nearly all (99%) fellows in both surveys believed physicians have a responsibility to help patients at end of life. Ranking of teaching quality during fellowship in all areas (mean, 4.1 ± 0.8 on a scale of 0-5 0, poor; 5, excellent) and specific to end-of-life care (mean, 2.4 ± 1.1) was unchanged from 2003, but knowledge of the annual gross mortality rate for dialysis patients was nominally worse in 2013 because only 57% versus 67% in 2003 answered correctly ( P = 0.05). To an open-ended question asking what would most improve fellows’ end-of-life care education, the most common response was a required palliative medicine rotation during fellowship. Limitations Assessments were based on fellows’ subjective perceptions. Conclusions Nephrology fellows increasingly believe they should learn to provide end-of-life care during fellowship. However, perceptions about the quality of this teaching have not improved during the past decade. Palliative care training should be integrated into nephrology fellowship curricula.
An abstract of a study by Sudore et al developing a consensus definition of advance care planning for adults is presented. Panelists identified several tensions such as whether the ACP definition ...should focus on conversations vs. written advance directives: patients' values vs. treatment preferences; current shared decision making vs. future medical decisions; and who should be included in the process.
Abstract Context Measuring What Matters (MWM) prioritizes quality measures in palliative care practice. Hematologic malignancy patients are less likely to access palliative care, yet little is known ...about their unique needs. Differences in MWM adherence may highlight opportunities to improve palliative care in hematology. Objectives To assess adherence to MWM measures by palliative care clinicians caring for patients with hematologic malignancies, compared to those with solid tumors. Methods We used the Quality Data Collection Tool (QDACT) to assess completion of MWM measures across nine sites. Results We included data from 678 patients’ first visits and various care settings; 64 (9.4%) had a hematologic malignancy, while 614 (90.6%) had a solid tumor. Hematology patients were more likely to be seen in a hospital (52 or 81.3% vs. 420 or 68%), while solid tumor patients were more frequently seen at home or in clinics (160 26% vs. 7 10.9%). Of the nine MWM measures we assessed, high adherence (>90%) was seen regardless of tumor type in measures #3 (Pain Treatment), #7 (Spiritual Concerns), #8 (Treatment Preferences) and #9 (Care Consistent with Preferences). Clinicians seeing hematology patients were significantly less likely to meet measures #2 (Screening for Physical Symptoms; 57.8% vs. 84.2%, P <0.001), and #5 (Discussion of Emotional Needs; 56.3 vs. 70.0%, P =0.03). Conclusion MWM adherence regarding symptom assessment and meeting emotional needs was lower for patients with hematologic malignancies compared to those with solid tumors. This finding suggests two key areas for quality improvement initiatives in palliative care for patients with hematologic malignancies.
Abstract Context Latinos experience significant health disparities at the end of life compared with non-Latinos. Objectives To determine the feasibility of a patient navigator intervention to improve ...palliative care outcomes for Latino adults with serious illness. Methods This was a pilot randomized controlled trial that included 64 Latino adults with life-limiting illness randomized to an intervention or a control group. All participants received a packet of linguistically matched materials on palliative care. In addition, intervention participants received up to five home visits from the bilingual, bicultural patient navigator. Visits focused on addressing barriers to palliative care through education, activation, and culturally tailored messaging. Outcomes included feasibility and advance care planning rates, documentation of pain management discussions in the medical record, and hospice utilization. Results Of the 32 patients randomized to the intervention arm, 81% had at least one home visit (range 1–5) with the patient navigator. Overall, advance care planning was higher in the intervention group (47% n = 15 vs. 25% n = 8, P = 0.06), and 79% of intervention participants had a discussion about pain management documented in their medical record vs. 54% of control patients ( P = 0.05). Hospice enrollment between the two groups ( n = 18 decedents) was similar ( n = 7 intervention vs. n = 6 control); length of stay in the intervention group was 36.4 ± 51.6 vs. 19.7 ± 33.6 days for control patients ( P = 0.39). Conclusion A culturally tailored patient navigator intervention was feasible and suggests improved palliative care outcomes for Latinos facing advanced medical illness, justifying a fully powered randomized controlled trial.
Highlights • Cognitive biases can influence decisions in a non-normative way. • Implantable cardioverter-defibrillators (ICDs) are a challenging decision. • Retrospectively, we found indications of ...cognitive bias in ICD decision making. • On the whole, the biases appeared to encourage ICD treatment.
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