BackgroundUnderstanding the characteristics of communication that foster patient-centered outcomes amid serious illness are essential for the science of palliative care. However, epidemiological cohort studies that directly observe clinical conversations can be challenging to conduct in the natural setting. We describe the successful enrollment, observation and data collection methods of the ongoing Palliative Care Communication Research Initiative (PCCRI).MethodsThe PCCRI is a multi-site cohort study of naturally occurring inpatient palliative care consultations. The 6-month cohort data includes directly observed and audio-recorded palliative care consultations (up to first 3 visits); patient/proxy/clinician self-report questionnaires both before and the day after consultation; post-consultation in-depth interviews; and medical/administrative records.ResultsOne hundred fourteen patients or their proxies enrolled in PCCRI during Enrollment Year One (of Three). Seventy percent of eligible patients/proxies were invited to hear about a communication research study (188/269); 60 % of them ultimately enrolled in the PCCRI (114/188), resulting in a 42 % sampling proportion (114/269 eligible). All PC clinicians at study sites were invited to participate; all 45 participated.ConclusionsEpidemiologic study of patient-family-clinician communication in palliative care settings is feasible and acceptable to patients, proxies and clinicians. We detail the successful PCCRI methods for enrollment, direct observation and data collection for this complex “field” environment.
Prognoses are routinely communicated in PC consultations with hospitalized patients and their families. The rate and characteristics of prognosis communication differ based on the length of time the patient is expected to live.
Context. Clinicians frequently overestimate survival time in serious illness. Objective. The objective of this study was to understand the frequency of overestimation in palliative care (PC) and the relation with end-of-life (EOL) treatment.Methods. This is a multisite cohort study of 230 hospitalized patients with advanced cancer who consulted with PC between 2013 and 2016. We asked the consulting PC clinician to make their ''best guess'' about the patients' ''most likely survival time, assuming that their illnesses are allowed to take their natural course'' (<24 hours; 24 hours to less than two weeks; two weeks to less than three months; three months to less than six months; six months or longer). We followed patients for up to six month for mortality and EOL treatment utilization. Patients completed a brief interviewer-facilitated questionnaire at study enrollment.Results. Median survival was 37 days (interquartile range: 12 days, 97 days) and 186/230 (81%) died during the follow-up period. Forty-one percent of clinicians' predictions were accurate. Among inaccurate prognoses, 85% were overestimates. Among those who died, overestimates were substantially associated with less hospice use (OR adj : 0.40; 95% CI: 0.16e0.99) and later hospice enrollment (within 72 hours of death OR adj : 0.33; 95% CI: 0.15e0.74). PC clinicians were substantially more likely to overestimate survival for patients who identified as Black or Latino compared to others (OR adj : 3.89; 95% CI: 1.64e9.22). EOL treatment preferences did not explain either of these findings.Conclusion. Overestimation is common in PC, associated with lower hospice use and a potentially mutable source of racial/ethnic disparity in EOL care.
PURPOSE Many individuals perceive their cardiovascular disease (CVD) risk to be lower than established clinical tools would estimate, yet little is known about the long-term consequences of holding such optimistic beliefs. We evaluated whether lower self-ratings of CVD risk are associated with lower rates of CVD death after addressing potential confounding by an extensive set of social and biologic CVD risk factors. METHODSWe conducted a 15-year mortality surveillance study of adults aged 35 to 75 years from southeastern New England (n = 2,816) who had no history of myocardial infarction. Baseline evaluation in 1990-1992 included household interview, anthropomorphic measures, and laboratory analyses. Outcomes were obtained using the National Death Index records through December 2005.RESULTS Rating oneself to be at lower-than-average risk for one's age and sex was associated with lower rates of CVD mortality among men (hazard ratio [HR] = 0.3; 95% confi dence interval [CI], 0.2-0.7) but not among women (HR = 0.9; 95% CI, 0.5-1.7). None of the following weakened the fi ndings among men: adjustment for baseline Framingham Risk Score, propensity score adjustment for both social and biologic factors, and censoring the fi rst 2 years of surveillance.CONCLUSIONS Lower self-ratings of CVD risk are independently associated with lower rates of CVD death among men. INTRODUCTIONR isk perception affects health behavior and emotional well-being among individuals facing a health threat. [1][2][3] When the behavior required to ameliorate the threat is a single event (eg, vaccination), 4 heightened perceptions of risk appear to motivate preventive action. In turn, successful completion of the preventive action facilitates reduction in risk perception. 4 Thus, holding higher risk perceptions can be benefi cial in some health contexts.The threat of cardiovascular disease (CVD), however, requires preventive actions that are not single events; they are multidimensional, ongoing, and effort-intensive. The preventive value of harboring higher perceptions of CVD risk is therefore less clear. An individual's failure to engage and sustain CVD preventive action can exacerbate negative emotions arising from threat perception, thereby leading to dysfunctional coping behaviors. In fact, holding optimistic perceptions of risk, whether through lack of awareness or denial, may protect against fear-related coping behaviors and the physiologic effects of stress that, in turn, can hasten the onset of CVD events. [5][6][7] These benefi ts might explain why so many adults tend to underestimate their personal risk of experiencing a CVD event. [8][9][10][11][12] Given the rapid emergence of genetic technologies that are likely to shape risk perceptions, 13 it is both timely and essential to investigate the long-term health impact of self-rated risk. We conducted a 15-year morRobert Gramling, MD 303SEL F -R AT ED C A R DIOVA SCUL A R RISK AND 15 -Y E A R MORTA LIT Y tality surveillance study of adults who rated their own CVD risk in the early...
Background: Seriously ill hospitalized patients and their loved ones are frequently faced with complex treatment decisions laden with expressions of emotional distress during palliative care (PC) consultations. Little is known about these emotional expressions or the compassionate responses providers make and how common these are in PC decision-making conversations. Objectives: To describe the types and frequency of emotional distress that patients and loved ones express and how providers respond to these emotions during PC decision-making consultations with seriously ill hospitalized patients. Methods: We used a quantitative descriptive approach to analyze 71 audio-recorded inpatient PC decisionmaking consultations for emotional distress and clinicians' responses to those emotions using reliable and established methods. Results: A total of 69% of conversations contained at least one expression of emotional distress. The perconversation frequency of expressions of emotional distress ranged from 1 to 10. Anxiety/fear were the most frequently encountered emotions (48.4%) followed by sadness (35.5%) and anger/frustration (16.1%). More than half of the emotions related to the patient's feelings (53.6%) and 41.9% were related to the loved ones' own emotions. The majority of emotions were moderate in intensity (65.8%) followed by strong (20.7%) and mild (13.5%). Clinicians responded to a majority of emotions with a compassionate response (75.7%) followed by those with medical content (21.9%) and very few were ignored (1.3%). Conclusions: Expressions of emotional distress are common during PC consultations and are usually met with compassionate responses by the clinician.
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