Rachelle Bernacki

Development of the Serious Illness Care Program: a randomised controlled trial of a palliative care communication intervention

Introduction Ensuring 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 analysis Patients 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 patients 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 dissemination This 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 number Protocol identifier NCT01786811; Pre-results.

Strategic Targeting of Advance Care Planning Interventions: The Goldilocks Phenomenon

Strategically selecting patients for discussions and documentation about limiting life-sustaining treatments-choosing the right time along the end-of-life trajectory for such an intervention and identifying patients at high risk of facing end-of-life decisions-can have a profound impact on the value of advance care planning (ACP) efforts. Timing is important because the completion of an advance directive (AD) too far from or too close to the time of death can lead to end-of-life decisions that do not optimally reflect the patients values, goals, and preferences: a poorly chosen target patient population that is unlikely to need an AD in the near future may lead to patients making unrealistic, hypothetical choices, while assessing preferences in the emergency department or hospital in the face of a calamity is notoriously inadequate. Because much of the currently studied ACP efforts have led to a disappointingly small proportion of patients eventually benefitting from an AD, careful targeting of the intervention should also improve the efficacy of such projects. A key to optimal timing and strategic selection of target patients for an ACP program is prognostication, and we briefly highlight prognostication tools and studies that may point us toward high-value AD interventions.

Recommendations for Best Communication Practices to Facilitate Goal-concordant Care for Seriously Ill Older Patients With Emergency Surgical Conditions.

OBJECTIVE To address the need for improved communication practices to facilitate goal-concordant care in seriously ill, older patients with surgical emergencies. SUMMARY BACKGROUND DATA Improved communication is increasingly recognized as a central element in providing goal-concordant care and reducing health care utilization and costs among seriously ill older patients. Given high rates of surgery in the last weeks of life, high risk of poor outcomes after emergency operations in these patients, and barriers to quality communication in the acute setting, we sought to create a framework to support surgeons in communicating with seriously ill, older patients with surgical emergencies. METHODS An interdisciplinary panel of 23 national leaders was convened for a 1-day conference at Harvard Medical School to provide input on concept, content, format, and usability of a communication framework. A prototype framework was created. RESULTS Participants supported the concept of a structured approach to communication in these scenarios, and delineated 9 key elements of a framework: (1) formulating prognosis, (2) creating a personal connection, (3) disclosing information regarding the acute problem in the context of the underlying illness, (4) establishing a shared understanding of the patients condition, (5) allowing silence and dealing with emotion, (6) describing surgical and palliative treatment options, (7) eliciting patients goals and priorities, (8) making a treatment recommendation, and (9) affirming ongoing support for the patient and family. CONCLUSIONS Communication with seriously ill patients in the acute setting is difficult. The proposed communication framework may assist surgeons in delivering goal-concordant care for high-risk patients.

Improving Access to Palliative Care through an Innovative Quality Improvement Initiative: An Opportunity for Pay-for-Performance

BACKGROUND Improving access to palliative care is an important priority for hospitals as they strive to provide the best care and quality of life for their patients. Even in hospitals with longstanding palliative care programs, only a small proportion of patients with life-threatening illnesses receive palliative care services. Our two well-established palliative care programs in large academic hospitals used an innovative quality improvement initiative to broaden access to palliative care services, particularly to noncancer patients. METHODS The initiative utilized a combination of electronic and manual screening of medical records as well as intensive outreach efforts to identify two cohorts of patients with life-threatening illnesses who, according to University HealthSystems Consortium (UHC) benchmarking criteria, would likely benefit from palliative care consultation. Given the differing cultures and structure of the two institutions, each service developed a unique protocol for identifying and consulting on suitable patients. RESULTS Consultation rates in the target populations tripled following the initiative: from 16% to 46% at one hospital and from 15% to 48% at the other. Although two different screening and identification processes were developed, both successfully increased palliative care consultations in the target cohorts. CONCLUSION Quality improvement strategies that incorporate pay-for-performance incentives can be used effectively to expand palliative care services to underserved populations.

Improving Communication About Serious Illness in Primary Care: A Review

IMPORTANCE The Institute of Medicine recently called for systematic improvements in clinician-led conversations about goals, values, and care preferences for patients with serious and life-threatening illnesses. Studies suggest that these conversations are associated with improved outcomes for patients and their families, enhanced clinician satisfaction, and lower health care costs; however, the role of primary care clinicians in driving conversations about goals and priorities in serious illness is not well defined. OBJECTIVE To present a review of a structured search of the evidence base about communication in serious illness in primary care. EVIDENCE REVIEW MEDLINE was searched, via PubMed, on January 19, 2016, finding 911 articles; 126 articles were reviewed and selected titles were added from bibliography searches. FINDINGS Review of the literature informed 2 major topic areas: the role of primary care in communication about serious illness and clinician barriers and system failures that interfere with effective communication. Literature regarding the role that primary care plays in communication focused primarily on the ambiguity about whether primary care clinicians or specialists are responsible for initiating conversations, the benefits of primary care clinicians and specialists conducting conversations, and the quantity and quality of discussions. Timely and effective communication about serious illness in primary care is hampered by key clinician barriers, which include deficits in knowledge, skills, and attitudes; discomfort with prognostication; and lack of clarity about the appropriate timing and initiation of conversations. Finally, system failures in coordination, documentation, feedback, and quality improvement contribute to lack of conversations. CONCLUSIONS AND RELEVANCE Clinician and system barriers will challenge primary care clinicians and institutions to meet the needs of patients with serious illness. Ensuring that conversations about goals and values occur at the appropriate time for seriously ill patients will require improved training, validation, and dissemination of patient selection tools, systems for conducting and revisiting conversations, accessible documentation, and incentives for measurement, feedback, and continuous improvement.

Serious Illness Communications Checklist

The goal of the Serious Illness Communication Checklist is to improve care for patients with serious illnesses and their families by facilitating and documenting discussions about end-of-life issues at the right time in the right way.

Methodological Research Priorities in Palliative Care and Hospice Quality Measurement

Quality measurement is a critical tool for improving palliative care and hospice, but significant research is needed to improve the application of quality indicators. We defined methodological priorities for advancing the science of quality measurement in this field based on discussions of the Technical Advisory Panel of the Measuring What Matters consensus project of the American Academy of Hospice and Palliative Medicine and Hospice and Palliative Nurses Association and a subsequent strategy meeting to better clarify research challenges, priorities, and quality measurement implementation strategies. In this article, we describe three key priorities: 1) defining the denominator(s) (or the population of interest) for palliative care quality indicators, 2) developing methods to measure quality from different data sources, and 3) conducting research to advance the development of patient/family-reported indicators. We then apply these concepts to the key quality domain of advance care planning and address relevance to implementation of indicators in improving care. Developing the science of quality measurement in these key areas of palliative care and hospice will facilitate improved quality measurement across all populations with serious illness and care for patients and families.

Surgeons' Perspectives on Avoiding Nonbeneficial Treatments in Seriously Ill Older Patients with Surgical Emergencies: A Qualitative Study

BACKGROUND Clinical decisions for seriously ill older patients with surgical emergencies are highly complex. Measuring the benefits of burdensome treatments in this context is fraught with uncertainty. Little is known about how surgeons formulate treatment decisions to avoid nonbeneficial surgery, or engage in preoperative conversations about end-of-life (EOL) care. OBJECTIVE We sought to describe how surgeons approach such discussions, and to identify modifiable factors to reduce nonbeneficial surgery near the EOL. DESIGN Purposive and snowball sampling were used to recruit a national sample of emergency general surgeons. Semistructured interviews were conducted between February and May 2014. MEASUREMENTS Three independent coders performed qualitative coding using NVivo software (NVivo version 10.0, QSR International). Content analysis was used to identify factors important to surgical decision making and EOL communication. RESULTS Twenty-four surgeons were interviewed. Participants felt responsible for conducting EOL conversations with seriously ill older patients and their families before surgery to prevent nonbeneficial treatments. However, wide differences in prognostic estimates among surgeons, inadequate data about postoperative quality of life (QOL), patients and surrogates who were unprepared for EOL conversations, variation in perceptions about the role of palliative care, and time constraints are contributors to surgeons providing nonbeneficial operations. Surgeons reported performing operations they knew would not benefit the patient to give the family time to come to terms with the patients demise. CONCLUSIONS Emergency general surgeons feel responsible for having preoperative discussions about EOL care with seriously ill older patients to avoid nonbenefical surgery. However, surgeons identified multiple factors that undermine adequate communication and lead to nonbeneficial surgery.

Mortality and Readmission After Cervical Fracture from a Fall in Older Adults: Comparison with Hip Fracture Using National Medicare Data

To examine the prevalence of cervical spine fractures after falls in older Americans, to show changes in recent years, and to compare 12‐month outcomes between individuals with cervical and hip fracture after falls.

Serious Illness Conversations in ESRD

Dialysis-dependent ESRD is a serious illness with high disease burden, morbidity, and mortality. Mortality in the first year on dialysis for individuals over age 75 years old approaches 40%, and even those with better prognoses face multiple hospitalizations and declining functional status. In the last month of life, patients on dialysis over age 65 years old experience higher rates of hospitalization, intensive care unit admission, procedures, and death in hospital than patients with cancer or heart failure, while using hospice services less. This high intensity of care is often inconsistent with the wishes of patients on dialysis but persists due to failure to explore or discuss patient goals, values, and preferences in the context of their serious illness. Fewer than 10% of patients on dialysis report having had a conversation about goals, values, and preferences with their nephrologist, although nearly 90% report wanting this conversation. Many nephrologists shy away from these conversations, because they do not wish to upset their patients, feel that there is too much uncertainty in their ability to predict prognosis, are insecure in their skills at broaching the topic, or have difficulty incorporating the conversations into their clinical workflow. In multiple studies, timely discussions about serious illness care goals, however, have been associated with enhanced goal-consistent care, improved quality of life, and positive family outcomes without an increase in patient distress or anxiety. In this special feature article, we will (1) identify the barriers to serious illness conversations in the dialysis population, (2) review best practices in and specific approaches to conducting serious illness conversations, and (3) offer solutions to overcome barriers as well as practical advice, including specific language and tools, to implement serious illness conversations in the dialysis population.