ffective communication plays a major role in facilitating adaptation to illness realities, appropriate decision making, and quality of life 1,2 throughout the trajectory of a serious illness. As patients approach the end of life, communication about goals of care and planning is a key element in helping assure that patients receive the care they want, in alleviating anxiety, and in supporting families. [3][4][5] Effective communication supports, not only endof-life care, but quality of life throughout the illness trajectory, even if death is not an imminent outcome.In this review, we evaluate current practices in communication about serious illness, their effects on patients, and factors that may influence these practices; we conclude by identifying best practices in communication about goals of care in serious illness, primarily in the ambulatory setting. On the basis of this assessment, we propose a systematic approach, informed by evidence, to help assure that each seriously ill patient has a personalized serious illness treatment plan. The most common clinical conditions relevant to this discussion include cancer, congestive heart failure, chronic obstructive pulmonary disease, and chronic kidney disease and/or end-stage renal disease. This work was undertaken as part of the American College of Physicians (ACP) High Value Care Initiative and subsequently endorsed by the High Value Task Force of the ACP. MethodsWe conducted a narrative review of evidence about advance care planning and end-of-life communication practices to provide clinicians with practical, evidence-based advice. Both observational and intervention studies were included, as well as indirect evidence from high-quality studies of palliative care specialist interventions that address the impact of communication about serious illness care planning on outcomes. We use the term serious illness care goals to include discussions about goals of care, advance care planning, and end-of-life discussions for patients with serious illness to emphasize the targeted population and the potential impact on these discussions, not just for the very end of life but for care throughout the course of serious illness. In citing specific studies, we use the terms (eg, end-of-life care) used by the authors (see eMethods in the Supplement for a detailed description of methodology). For a summary of the ACP High Value Care Advice, see Box 1.An understanding of patients' care goals in the context of a serious illness is an essential element of high-quality care, allowing clinicians to align the care provided with what is most important to the patient. Early discussions about goals of care are associated with better quality of life, reduced use of nonbeneficial medical care near death, enhanced goal-consistent care, positive family outcomes, and reduced costs. Existing evidence does not support the commonly held belief that communication about end-of-life issues increases patient distress. However, conversations about care goals are often conducted by physicians who do no...
IntroductionEnsuring that patients receive care that is consistent with their goals and values is a critical component of high-quality care. This article describes the protocol for a cluster randomised controlled trial of a multicomponent, structured communication intervention.Methods and analysisPatients with advanced, incurable cancer and life expectancy of <12 months will participate together with their surrogate. Clinicians are enrolled and randomised either to usual care or the intervention. The Serious Illness Care Program is a multicomponent, structured communication intervention designed to identify patients, train clinicians to use a structured guide for advanced care planning discussion with patients, ‘trigger’ clinicians to have conversations, prepare patients and families for the conversation, and document outcomes of the discussion in a structured format in the electronic medical record. Clinician satisfaction with the intervention, confidence and attitudes will be assessed before and after the intervention. Self-report data will be collected from patients and surrogates approximately every 2 months up to 2 years or until the patient's death; patient medical records will be examined at the close of the study. Analyses will examine the impact of the intervention on the patient receipt of goal-concordant care, and peacefulness at the end of life. Secondary outcomes include patient anxiety, depression, quality of life, therapeutic alliance, quality of communication, and quality of dying and death. Key process measures include frequency, timing and quality of documented conversations.Ethics and disseminationThis study was approved by the Dana-Farber Cancer Institute Institutional Review Board. Results will be reported in peer-reviewed publications and conference presentations.Trial registration numberProtocol identifier NCT01786811; Pre-results.
IMPORTANCE High-quality conversations between clinicians and seriously ill patients about values and goals are associated with improved outcomes but occur infrequently. OBJECTIVE To examine feasibility, acceptability, and effect of a communication quality-improvement intervention (Serious Illness Care Program) on patient outcomes. DESIGN, SETTING, AND PARTICIPANTS A cluster randomized clinical trial of the Serious Illness Care Program in an outpatient oncology setting was conducted. Patients with advanced cancer (n = 278) and oncology clinicians (n = 91) participated between September 1, 2012, and June 30, 2016. Data analysis was performed from September 1, 2016, to December 27, 2018. All analyses were conducted based on intention to treat. INTERVENTIONS Tools, training, and system changes. MAIN OUTCOMES AND MEASURES The coprimary outcomes included goal-concordant care (Life Priorities) and peacefulness (Peace, Equanimity, and Acceptance in the Cancer Experience questionnaire) at the end of life. Secondary outcomes included therapeutic alliance (Human Connection Scale), anxiety (Generalized Anxiety Disorder 7 scale), depression (Patient Health Questionnaire 9), and survival. Uptake and effectiveness of clinician training, clinician use of the conversation tool, and conversation duration were evaluated. RESULTS Data from 91 clinicians in 41 clusters (72.9% participation; intervention, n = 48; control, n = 43; 52 [57.1%] women) and 278 patients (45.8% participation; intervention, n = 134; control, n = 144; 148 [53.2%] women) were analyzed. Forty-seven clinicians (97.9%) rated the training as effective (mean [SD] score, 4.3 [0.7] of 5.0 possible); of 39 who received a reminder, 34 (87.2%) completed at least 1 conversation (median duration, 19 minutes; range, 5-70). Peacefulness, therapeutic alliance, anxiety, and depression did not differ at baseline. The coprimary outcomes were evaluated in 64 patients; no significant differences were found between the intervention and control groups. However, the trial demonstrated significant reductions in the proportion of patients with moderate to severe anxiety (10.2% vs 5.0%; P = .05) and depression symptoms (20.8% vs 10.6%; P = .04) in the intervention group at 14 weeks after baseline. Anxiety reduction was sustained at 24 weeks (10.4% vs 4.2%; P = .02), but depression reduction was not sustained (17.8% vs 12.5%; P = .31). Survival and therapeutic alliance did not differ between groups. CONCLUSIONS AND RELEVANCE The results of this cluster randomized clinical trial were null with respect to the coprimary outcomes of goal-concordant care and peacefulness at the end of life. Methodologic challenges for the primary outcomes, including measure selection and sample size, limit the conclusions that can be drawn from the study. However, the significant reductions in anxiety and depression in the intervention group are clinically meaningful and require further study. TRIAL REGISTRATION ClinicalTrials.gov identifier: NCT01786811
IMPORTANCE Earlier clinician-patient conversations about patients' values, goals, and preferences in serious illness (ie, serious illness conversations) are associated with better outcomes but occur inconsistently in cancer care. OBJECTIVE To evaluate the efficacy of a communication quality-improvement intervention in improving the occurrence, timing, quality, and accessibility of documented serious illness conversations between oncology clinicians and patients with advanced cancer. DESIGN, SETTING, PARTICIPANTS This cluster randomized clinical trial in outpatient oncology was conducted at the Dana-Farber Cancer Institute and included physicians, advanced-practice clinicians, and patients with cancer who were at high risk of death. MAIN OUTCOMES AND MEASURES The primary outcomes (goal-concordant care and peacefulness at the end of life) are published elsewhere. Secondary outcomes are reported herein, including (1) documentation of at least 1 serious illness conversation before death, (2) timing of the initial conversation before death, (3) quality of conversations, and (4) their accessibility in the electronic medical record (EMR). RESULTS We enrolled 91 clinicians (48 intervention, 43 control) and 278 patients (134 intervention, 144 control). Of enrolled patients, 58% died during the study (n=161); mean age was 62.3 years (95% CI, 58.9-65.6 years); 55% were women (n=88). These patients were cared for by 76 of the 91 enrolled clinicians (37 intervention, 39 control); years in practice, 11.5 (95% CI, 9.2-13.8); 57% female (n=43). Medical record review after patients' death demonstrated that a significantly higher proportion of intervention patients had a documented discussion compared with controls (96% vs 79%, P = .005) and intervention conversations occurred a median of 2.4 months earlier (median, 143 days vs 71 days, P < .001). Conversation documentation for intervention patients was significantly more comprehensive and patient centered, with a greater focus on values or goals (89% vs 44%, P < .001), prognosis or illness understanding (91% vs 48%, P < .001), and life-sustaining treatment preferences (63% vs 32%, P = .004). Documentation about end-of-life care planning did not differ between arms (80% intervention vs 68% control, P = .08). Significantly more intervention patients had documentation that was accessible in the EMR (61% vs 11%, P < .001). CONCLUSIONS AND RELEVANCE This communication quality-improvement intervention resulted in more, earlier, better, and more accessible serious illness conversations documented in the EMR. To our knowledge, this is the first such study to demonstrate improvement in all 4 of these outcomes.
It is well known that clinicians experience distress and grief in response to their patients' suffering. Oncologists and palliative care specialists are no exception since they commonly experience patient loss and are often affected by unprocessed grief. These emotions can compromise clinicians' personal well-being, since unexamined emotions may lead to burnout, moral distress, compassion fatigue, and poor clinical decisions which adversely affect patient care. One approach to mitigate this harm is self-care, defined as a cadre of activities performed independently by an individual to promote and maintain personal well-being throughout life. This article emphasizes the importance of having a self-care and self-awareness plan when caring for patients with life-limiting cancer and discusses validated methods to increase self-care, enhance self-awareness and improve patient care.
Improving communication about goals and values for patients with advancing serious illness nearing the end of life is a key opportunity to improve the value of care. The Serious Illness Care Program, implemented at primary care clinics affiliated with Brigham and Women's Hospital in Boston, Massachusetts, is a multicomponent intervention designed to support best practices in communication by clinicians to increase conversations with patients with serious illness about their goals and values. We conducted a study of the program in fourteen primary care clinics participating in a high-risk care management program based in an accountable care organization. Patients in the clinics with the program implemented were more likely than those in comparison clinics to have serious illness conversations-including discussion of values and goals-documented in patients' medical records. Clinicians who participated also reported high satisfaction with training they received as part of the program, which they regarded as effective. This work suggests that the Serious Illness Care Program promotes more and better conversations among selected primary care patients, and it highlights the need for further research.
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