Publications by authors named "Juliet Jacobsen"

48 Publications

Development of a Prognostic Awareness Impact Scale for Patients with Advanced Cancer.

J Palliat Med 2021 Oct 11. Epub 2021 Oct 11.

Massachusetts General Hospital, Boston, Massachusetts, USA.

No reliable instruments exist to measure prognostic awareness and its psychological and behavioral impacts for patients with advanced cancer. We developed the Prognostic Awareness Impact Scale (PAIS) using a qualitative approach. During phase 1, we convened a working group with a transdisciplinary team of clinicians from oncology ( = 2), psychology ( = 2), psychiatry ( = 1), palliative care ( = 3), and survey development ( = 1) to identify key domains of PAIS. Using a consensus-driven process, the team generated an item bank for each domain. During phase 2, we conducted cognitive interviews with 39 patients with advanced cancer to assess the understandability of the PAIS. The working group developed a conceptual framework for PAIS, identifying three domains: (1) cognitive understanding of prognosis (capacity to understand intellectually one's prognosis), (2) emotional coping (capacity to process prognostic uncertainty and terminal prognosis), and (3) adaptive response (capacity to use prognostic awareness to inform life decisions). Cognitive interviews revealed that patients had an accurate understanding of most PAIS items. Patients reported difficulty with binary response options for questions pertaining to emotional coping. They expressed difficulty answering numerous questions regarding their cognitive understanding of their prognosis. We revised the PAIS by (1) replacing binary response options with ordinal agreement scales; and (2) reducing the number of items focused on cognitive understanding of prognosis. We developed a conceptual framework to capture prognostic awareness and its psychological and behavioral impacts for patients with advanced cancer using the PAIS. Future work should focus on validating the PAIS by testing its psychometric properties.
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http://dx.doi.org/10.1089/jpm.2021.0238DOI Listing
October 2021

Foundations for Psychological Thinking in Palliative Care: Frame and Formulation.

J Palliat Med 2021 09;24(10):1430-1435

Division of Palliative Care and Geriatric Medicine, Department of Medicine, Massachusetts General Hospital, Boston, Massachusetts, USA.

This is the second article in the psychological elements of palliative care (PEPC) series. This series focuses on how key concepts from psychotherapy can be used in the context of palliative care to improve communication and fine tune palliative care interventions. In this article, we introduce two foundational concepts: frame and formulation. The is the context in which care is delivered; it includes concrete aspects of clinical care such as where it takes place, for how long, and with what frequency. It also includes the conceptual aspects of care, including the specific roles of the clinician and the patient, emergency contingencies, and the extent to which emotion is invited within the clinical encounter. Defining and discussing the frame with patients are especially important in palliative care because of the strong emotions that arise when talking about serious illness and because many patients may not be familiar with palliative care before they are in care. is the process by which we make judgment-neutral psychological hypotheses to understand the feelings and behaviors of our patients. It is an ongoing, dynamic process whereby as we learn more about our patients, we integrate that data to improve our explanatory model of who they are. This helps us tailor our interventions to meet their unique needs and respect their life experiences, aptitudes, and vulnerabilities. Both concepts are foundational PEPC; understanding them will prepare readers to continue to the next four articles in the series.
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http://dx.doi.org/10.1089/jpm.2021.0256DOI Listing
September 2021

The Meaning of Together: Exploring Transference and Countertransference in Palliative Care Settings.

J Palliat Med 2021 Sep 2. Epub 2021 Sep 2.

Harvard Medical School, Boston, Massachusetts, USA.

Establishing an empathic clinical relationship is a cornerstone of high-quality palliative care. More than simply approaching patients with a pleasant affect or "being nice," we propose that skilled clinicians routinely employ distinct psychological elements when creating effective bonds with seriously ill patients and their families. Palliative care involvement has been shown to improve a variety of outcomes for patients with serious cancer, and yet the components of this salutary effect are still becoming known in the literature. Many believe that a successful interpersonal relationship is the essential factor. In this article, we will apply the psychological constructs of transference and countertransference to the unique arena of palliative care communication. Although most palliative care clinicians are not mental health clinicians and have not received training or certification in psychotherapeutic techniques, there are elements from these frameworks that may be advantageously applied. We will draw on sources from psychology and psychiatry to explore the in-between spaces of clinical encounter. Using the case of Gloria, a patient living with cancer drawn from our clinical experience, we will offer adapted definitions and novel applications of these psychological concepts. Branching from the theory to everyday practice, we will then offer practical suggestions to guide the palliative care clinician in recognizing and managing strong countertransference reactions. This article is the third installment of a series on the psychological elements of palliative care.
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http://dx.doi.org/10.1089/jpm.2021.0240DOI Listing
September 2021

Exploring the Psychological Aspects of Palliative Care: Lessons Learned from an Interdisciplinary Seminar of Experts.

J Palliat Med 2021 09;24(9):1274-1279

Massachusetts General Hospital and Harvard Medical School, Boston, Massachusetts, USA.

Palliative care has been shown to help patients live well with serious illness, but the specific psychological factors that contribute to this benefit remain investigational. Although support of patient coping has emerged as a likely factor, it is unclear how palliative care helps patients to cope with serious illness. The therapeutic relationship has been proposed as a key element in beneficial patient outcomes, possibly undergirding effective patient and family coping. Understanding the distress of our patients with psychological depth requires the input of varied clinicians and thinkers. The complex conceptual model we developed draws upon the contributions of medicine, nursing, psychology, spiritual care, and social work disciplines. To elucidate these issues, we convened an interdisciplinary seminar of content experts to explore the psychological components of palliative care practice. "Healing Beyond the Cure: Exploring the Psychodynamic Aspects of Palliative Care" was held in May 2019 at Harvard University's Radcliffe Institute for Advanced Study. Over two days, the working group explored these essential elements of successful palliative care encounters through lecture and open discussion. This special report describes the key psychological aspects of palliative care that we believe underlie optimal adaptive coping in palliative care patients. We also outline key areas for further development in palliative care research, education, and clinical practice. The discussion held at this meeting became the basis for a planned series of articles on the psychological elements of palliative care that will be published in the on a monthly basis during the fall and winter of 2021-2022.
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http://dx.doi.org/10.1089/jpm.2021.0224DOI Listing
September 2021

Best Practices for Teaching Clinicians to Use a Serious Illness Conversation Guide.

Palliat Med Rep 2020 28;1(1):135-142. Epub 2020 Jul 28.

Division of Palliative Care and Pediatrics, Massachusetts General Hospital, Boston, Massachusetts, USA.

With the palliative care workforce shortage and changes in advance care planning reimbursement, many institutions are requesting that palliative care specialists provide serious illness communication training across their institution's workforce. Based on our experience training clinicians to use the Partners Serious Illness Conversation Guide, a structured guide to teach basic palliative care communication skills, we propose a set of best practices to help others teach use of a communication guide at their institution, including fostering a safe learning environment, explicit teaching of structured communication, and preparing cofacilitators to adapt to differing skill levels of learners.
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http://dx.doi.org/10.1089/pmr.2020.0066DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8241361PMC
July 2020

Too much too late? Optimizing treatment through conversations over years, months, and days.

Acta Oncol 2021 Aug 2;60(8):957-960. Epub 2021 Jul 2.

The Institute for Palliative Care at Lund University and Region Skåne, Lund, Sweden.

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http://dx.doi.org/10.1080/0284186X.2021.1945680DOI Listing
August 2021

Adapting the serious illness conversation guide for use in the emergency department by social workers.

Palliat Support Care 2021 Jun 18:1-5. Epub 2021 Jun 18.

Division of Palliative Care and Geriatric Medicine, Massachusetts General Hospital, Harvard Medical School, Boston, MA.

Objective: Although important treatment decisions are made in the Emergency Department (ED), conversations about patients' goals and values and priorities often do not occur. There is a critical need to improve the frequency of these conversations, so that ED providers can align treatment plans with these goals, values, and priorities. The Serious Illness Conversation Guide has been used in other care settings and has been demonstrated to improve the frequency, quality, and timing of conversations, but it has not been used in the ED setting. Additionally, ED social workers, although integrated into hospital and home-based palliative care, have not been engaged in programs to advance serious illness conversations in the ED. We set out to adapt the Serious Illness Conversation Guide for use in the ED by social workers.

Methods: We undertook a four-phase process for the adaptation of the Serious Illness Conversation Guide for use in the ED by social workers. This included simulated testing exercises, pilot testing, and deployment with patients in the ED.

Results: During each phase of the Guide's adaptation, changes were made to reflect both the environment of care (ED) and the clinicians (social workers) that would be using the Guide. A final guide is presented.

Significance Of Results: This report presents an adapted Serious Illness Conversation Guide for use in the ED by social workers. This Guide may provide a tool that can be used to increase the frequency and quality of serious illness conversations in the ED.
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http://dx.doi.org/10.1017/S1478951521000821DOI Listing
June 2021

Here, but Apart During COVID-19: Bringing Connection and Empathy to the Socially Distant Family Meeting.

J Gen Intern Med 2021 04;36(4):1082-1083

Division of Palliative Care and Geriatric Medicine, Massachusetts General Hospital, Boston, MA, USA.

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http://dx.doi.org/10.1007/s11606-021-06635-6DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7853701PMC
April 2021

Neurology clinicians' views on palliative care communication: "How do you frame this?"

Neurol Clin Pract 2020 Dec;10(6):527-534

Division of Palliative Care and Geriatric Medicine (AZ, AMH, KB, JJ), Department of Medicine, Massachusetts General Hospital; Harvard Medical School (AZ, JAG, LT, KB, JJ); Department of Psychiatry (JAG, LT, MN-L), Massachusetts General Hospital, Boston.

Background: The communication process of preparing patients and families facing progressive neurodegenerative diseases for future illness has not been empirically elucidated; the goal of this qualitative study was to explore neurology interdisciplinary health professionals' communication experiences, including current approaches, facilitators, and challenges.

Methods: Three focus groups were conducted with 22 clinicians representing a range of health professions from several multidisciplinary neurology outpatient clinics at a large academic medical center. A thematic analysis approach was used to develop a coding structure and identify overarching themes.

Results: Neurology clinicians highlighted that in their practice, (1) conversations are triggered by acute events and practical needs; (2) conversations occur routinely but are rarely documented; (3) loss of patient capacity and resultant surrogate decision-making can be ethically fraught, especially in times of family conflict; (4) prognostic uncertainty, unfamiliarity with disease trajectories, and patient or surrogate avoidance pose communication challenges; and (5) generalist- and specialty-level palliative care roles should be better defined.

Conclusions: There is a need for a systematic, structured approach to communication that can be applied early in the disease trajectory and considered when developing integrated neuro-palliative care programs.
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http://dx.doi.org/10.1212/CPJ.0000000000000794DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7837442PMC
December 2020

PSST! I Need Help! Development of a Peer Support Program for Clinicians Having Serious Illness Conversations During COVID-19.

J Gen Intern Med 2021 Apr 26;36(4):1094-1097. Epub 2021 Jan 26.

Continuum Project, Division of Palliative Care and Geriatrics, Massachusetts General Hospital, Boston, MA, USA.

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http://dx.doi.org/10.1007/s11606-020-06565-9DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7837336PMC
April 2021

The Experience of Emergency Department Providers With Embedded Palliative Care During COVID.

J Pain Symptom Manage 2020 Nov 31;60(5):e35-e43. Epub 2020 Aug 31.

Department of Palliative Care and Geriatric Medicine, Massachusetts General Hospital, Harvard Medical School, Boston, Massachusetts, USA.

Context: Although the importance of palliative care (PC) integration in the emergency department (ED) has long been recognized, few formalized programs have been reported, and none have evaluated the experience of ED clinicians with embedded PC.

Objectives: We evaluate the experience of ED clinicians with embedded PC in the ED during the coronavirus disease pandemic.

Methods: ED clinicians completed a survey about their perceptions of embedded PC in the ED. We summarized responses to closed-ended items using descriptive statistics and analyzed open-ended items using thematic analysis.

Results: There were 134 ED clinicians surveyed. About 101 replied (75% response rate). Of those who had interacted with PC, 100% indicated a benefit of having PC involved. These included freeing up ED clinicians for other tasks (89%), helping them feel more supported (84%), changing the patients care trajectory (67%), and contributing to clinician education (57%) and skills (49%). Among barriers related to engaging PC were difficulty locating them (8%) and lack of time to consult because of ED volume (5%). About 98% of respondents felt that having PC in the ED was either valuable or very valuable. Open-ended responses reflected a positive impact on clinician wellness and improvement in access to high-quality goal-concordant care. Clinicians expressed gratitude for having PC in the ED and noted the importance of having readily available and easily accessible PC in the ED.

Conclusion: ED clinicians' perception of embedded PC was overall positive, with an emphasis on the impact related to task management, enrichment of PC skills, providing support for the team, and improved care for ED patients.
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http://dx.doi.org/10.1016/j.jpainsymman.2020.08.007DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7456836PMC
November 2020

Implementing Automated Triggers to Identify Hospitalized Patients with Possible Unmet Palliative Needs: Assessing the Impact of This Systems Approach on Clinicians.

J Palliat Med 2020 11 24;23(11):1500-1506. Epub 2020 Jun 24.

Division of Palliative Care and Geriatric Medicine, Department of Medicine, Massachusetts General Hospital, Boston, Massachusetts, USA.

Understanding patients' goals and values is important to ensure goal-concordant care; however, such discussions can be challenging. Little is known about the impact of having these discussions on hospitalists. To assess the impact on hospitalists of a system that reminds them to have serious illness conversations with their patients identified with potential unmet palliative needs. Two group cohort trial. Single academic center. Internal medicine hospitalist physicians, nurse practitioners, and physician's assistants. Before the trial, all participants received serious illness conversation training. During the trial, hospitalists on intervention units received verbal notification when their recently admitted patients were identified using a computer algorithm as having possible unmet palliative needs. Hospitalists on the control unit received no notifications. At baseline and three months, hospitalists completed questionnaires regarding communication skill acquisition, perception of the importance of these conversations, and sense of the meaning gained from having them. Both groups had similar improvements in their self-reported communication skills and experienced a small decline in how important they felt the conversations were. Neither group perceived having the discussions as being affectively harmful to patients. The intervention hospitalists, over time, reported a slight reduction in the sense of meaning they achieved from the conversations. Routinely informing hospitalists when their patients were identified as being at increased risk for unmet palliative needs did not increase the sense of meaning these providers achieved. It is likely the pretrial training accounted for many of the positive outcomes in communication skills observed in both arms of the trial.
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http://dx.doi.org/10.1089/jpm.2020.0161DOI Listing
November 2020

Emergency Department-Based Palliative Care during COVID.

J Palliat Med 2020 09 22;23(9):1151-1152. Epub 2020 Jun 22.

Department of Emergency Medicine, Harvard Medical School, Massachusetts General Hospital, Boston, Massachusetts, USA.

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http://dx.doi.org/10.1089/jpm.2020.0285DOI Listing
September 2020

Case 19-2020: A 74-Year-Old Man with Acute Respiratory Failure and Unclear Goals of Care.

N Engl J Med 2020 Jun 27;382(25):2450-2457. Epub 2020 May 27.

From the Department of Medicine, Massachusetts General Hospital, and the Department of Medicine, Harvard Medical School - both in Boston.

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http://dx.doi.org/10.1056/NEJMcpc2002419DOI Listing
June 2020

Exploring Patients' Experience with Clinicians Who Recognize Their Unmet Palliative Needs: An Inpatient Study.

J Palliat Med 2020 11 4;23(11):1493-1499. Epub 2020 May 4.

Core Educator Faculty, Department of Medicine, Massachusetts General Hospital, Boston, Massachusetts, USA.

Given the national shortage of palliative care specialists relative to the need for their services, engaging nonspecialists is important to ensure patients with serious illness have an opportunity to share their goals and values with their providers. Hospital medicine clinicians are well positioned to conduct these conversations given they care for many medically complex patients. Yet, little is known about the patient experience of inpatient goals and values conversations led by hospitalist teams. To assess patients' experience and perception of the quality of goals and values conversations. Single center, tertiary care, nonrandomized, two group cohort trial of patients hospitalized on general medical inpatient units staffed by hospital medicine clinicians previously trained to conduct serious illness conversations. An automated screening tool was used to identify patients at increased risk for unmet palliative needs. The multidisciplinary team was informed of the screen's results on the intervention units but not on the control units. Intervention unit clinicians were asked to consider talking with patients about their goals and values. One hundred thirty patients participated in the study. The intervention patients reported improved quality of communication and fewer anxiety and depression symptoms compared with the control patients. Hospice utilization in addition to emergency department visits and hospital readmissions did not differ between the two groups. This study suggests that informing the care team regarding their patients' potential unmet palliative care needs is associated with patients reporting improved experience of their care without adverse effects on their mood.
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http://dx.doi.org/10.1089/jpm.2020.0043DOI Listing
November 2020

Scaling Implementation of the Serious Illness Care Program Through Coaching.

J Pain Symptom Manage 2020 07 20;60(1):101-105. Epub 2020 Mar 20.

Division of Palliative Care and Geriatrics, Massachusetts General Hospital, Harvard Medical School, Boston, Massachusetts, USA.

Background: We designed group coaching calls to reinforce communication skill acquisition and Serious Illness Care Program uptake in adult primary care.

Measures: Percentage of primary care physicians (PCPs) who have documented a serious illness conversation in the electronic health record (EHR) approximately three and six months after the coaching intervention. Participant feedback surveys to better understand provider attitudes toward the coaching intervention.

Intervention: We offered 60-minute group coaching calls to internal medicine PCPs, previously trained in serious illness conversation skills, as part of an institutional quality incentive program. The calls addressed communication challenges common to serious illness care and instructed participants about how to document and bill for conversations.

Outcomes: We completed 31 coaching calls during three months, in which 170 of 228 PCPs attended in groups of two to nine participants per call (74.6% penetration rate). The percentage of PCPs who documented at least one serious illness conversation in the EHR increased from 18.4% to 41.2% six months after the intervention. Primary care internal medicine physicians found the one-hour coaching calls to be highly valuable, with 86.9% of respondents attesting they would recommend the calls to their colleagues. Content analysis of participant feedback identified the most useful coaching content elements to be self-reflection around the impact of prior conversation skills training, instruction around using the EHR to find and document advance care planning discussions, the opportunity to share individual challenges and successes with peers, and feedback/advice from communication experts in palliative care.

Conclusions/lessons Learned: Group coaching of PCPs resulted in more than a twofold increase in documented serious illness conversations.
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http://dx.doi.org/10.1016/j.jpainsymman.2020.03.008DOI Listing
July 2020

Rapid Adoption of a Serious Illness Conversation Electronic Medical Record Template: Lessons Learned and Future Directions.

J Palliat Med 2020 02;23(2):159-161

Division of Palliative Care and Geriatric Medicine, Massachusetts General Hospital, Boston, Massachusetts.

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http://dx.doi.org/10.1089/jpm.2019.0420DOI Listing
February 2020

Understanding and Addressing the Role of Coping in Palliative Care for Patients With Advanced Cancer.

J Clin Oncol 2020 03 5;38(9):915-925. Epub 2020 Feb 5.

Massachusetts General Hospital, Boston, MA.

Advanced cancer, with its considerable physical symptoms and psychosocial burdens, represents an existential threat and major stressor to patients and their caregivers. In response to such stress, patients and their caregivers use a variety of strategies to manage the disease and related symptoms, such as problem-focused, emotion-focused, meaning-focused, and spiritual/religious coping. The use of such coping strategies is associated with multiple outcomes, including quality of life, symptoms of depression and anxiety, illness understanding, and end-of-life care. Accumulating data demonstrate that early palliative care, integrated with oncology care, not only improves these key outcomes but also enhances coping in patients with advanced cancer. In addition, trials of home-based palliative care interventions have shown promise for improving the ways that patients and family caregivers cope together and manage problems as a dyad. In this article, we describe the nature and correlates of coping in this population, highlight the role of palliative care to promote effective coping strategies in patients and caregivers, and review evidence supporting the beneficial effects of palliative care on patient coping as well as the mechanisms by which improved coping is associated with better outcomes. We conclude with a discussion of the limitations of the state of science, future directions, and best practices on the basis of available evidence.
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http://dx.doi.org/10.1200/JCO.19.00013DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7082158PMC
March 2020

Chasing Hope: When Are Requests for Hospital Transfer a Place for Palliative Care Integration?

J Hosp Med 2020 04 23;14(4):250-251. Epub 2019 Dec 23.

Division of Palliative Care and Geriatrics, Massachusetts General Hospital, Boston, Massachusetts.

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http://dx.doi.org/10.12788/jhm.3341DOI Listing
April 2020

DNR, DNI, and DNO?

J Palliat Med 2020 06 12;23(6):829-831. Epub 2019 Nov 12.

Department of Surgery, Massachusetts General Hospital, Boston, Massachusetts, USA.

The addition of a do-not-operate (DNO) section to current medical orders for life-sustaining treatment (MOLST) and physician orders for life-sustaining treatment (POLST) medical order forms would more completely document patients' wishes for invasive interventions at the end of life. We propose a modification of the MOLST and POLST forms, in addition to hospital and electronic medical records, to include a DNO section, in addition to preexisting do-not-resuscitate (DNR) and do-not-intubate (DNI) orders, with the goal of reducing suffering from nonbeneficial surgical interventions in patients with severe illness at the end of life.
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http://dx.doi.org/10.1089/jpm.2019.0486DOI Listing
June 2020

To Prepare Patients Better: Reimagining Advance Care Planning.

Am Fam Physician 2019 03;99(5):278-280

Massachusetts General Hospital, Boston, MA, USA.

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March 2019

The Surprise Question Can Be Used to Identify Heart Failure Patients in the Emergency Department Who Would Benefit From Palliative Care.

J Pain Symptom Manage 2019 05 16;57(5):944-951. Epub 2019 Feb 16.

Division of Palliative Care, Department of Medicine, Massachusetts General Hospital, Harvard Medical School, Boston, Massachusetts, USA.

Context: Heart failure (HF) is associated with symptom exacerbations and risk of mortality after an emergency department (ED) visit. Although emergency physicians (EPs) treat symptoms of HF, often the opportunity to connect with palliative care is missed. The "surprise question" (SQ) "Would you be surprised if this patient died in the next 12 months?" is a simple tool to identify patients at risk for 12-month mortality.

Objectives: The objective of this study was to assess the accuracy of the SQ when used by EPs to assess patients with HF.

Methods: We conducted a prospective cohort study in which clinicians applied the SQ to patients presenting to the ED with symptoms of HF. Chart review and review of death records were completed. The primary outcome was accuracy of the surprise question to predict 12-month mortality. A univariate analysis for potential predictors of 12-month mortality was performed.

Results: During the study period, 199 patients were identified, and complete data were available for 97% of observations (n = 193). The one-year mortality was 29%. EPs reported that "they would not be surprised" if the patient died within the next 12 months in 53% of cases. 42.7% of these patients died within 12 months compared to 13.3% in the "would be surprised" group. There was a strong association with death in the "not surprised" group (odds ratio 4.85, 95% CI 2.34-9.98, P < 0.0001). The sensitivity, specificity, positive predictive value, and negative predictive value of the SQ were 78.6%, 56.9%, 42.7%, and 86.7%, respectively, with c-statistic = 0.68.

Conclusion: The SQ screening tool can assist ED providers in identifying HF patients that would benefit from early palliative care involvement.
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http://dx.doi.org/10.1016/j.jpainsymman.2019.02.007DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6713219PMC
May 2019

Softening Our Approach to Discussing Prognosis.

JAMA Intern Med 2019 01;179(1):5-6

Division of Palliative Care and Geriatrics, Massachusetts General Hospital, Harvard Medical School, Boston.

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http://dx.doi.org/10.1001/jamainternmed.2018.5786DOI Listing
January 2019

Communication Differences between Oncologists and Palliative Care Clinicians: A Qualitative Analysis of Early, Integrated Palliative Care in Patients with Advanced Cancer.

J Palliat Med 2019 01 25;22(1):41-49. Epub 2018 Oct 25.

2 Massachusetts General Hospital , Boston, Massachusetts.

Background: Growing evidence demonstrates the benefits of early, integrated palliative care (PC) for patients with advanced cancer and their caregivers. Yet, data are lacking on the communication patterns within this model of care.

Objective: The goals of this study were to describe the content of patient-clinician discussions among patients receiving PC and to compare differences in discussion content between oncologists and PC clinicians.

Design: We conducted a qualitative observational analysis.

Setting/subjects: We included patients with incurable lung and esophageal cancer enrolled in a randomized trial of early, integrated PC versus usual oncology care. We analyzed 68 audio-recorded clinic visits (34 oncologist visits; 34 PC clinician visits) immediately after patients' (N = 19) first and second cancer progressions. We examined themes of clinician communication, comparing the content and frequency of discussions between oncologists and PC clinicians.

Results: Although both oncology and PC clinicians discussed symptom management, medical understanding, and treatment decision making with patients at nearly all postprogression visits, PC clinicians tended to assess patient understanding of the treatment process and prognosis more often than oncologists. PC clinicians addressed patient coping, caregiver experiences and needs, and advance care planning more frequently than oncologists.

Conclusion: PC clinicians play a distinct, complementary role to oncologists in providing care for patients with advanced cancer and their caregivers. PC clinicians tend to assess and elaborate on patient understanding of prognosis and treatment and emphasize effective coping, caregiver needs, and advance care planning. These results illuminate the communication elements by which early, integrated PC may improve patient and caregiver outcomes.
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http://dx.doi.org/10.1089/jpm.2018.0092DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6916528PMC
January 2019

Not Your Grandma's Advance Care Planning: Preparing (Ourselves) for a Systems-Based Approach.

Authors:
Juliet Jacobsen

J Palliat Med 2018 07;21(7):893-894

Department of Palliative Care and Geriatrics, Massachusetts General Hospital , Harvard Medical School, Boston, Massachusetts.

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http://dx.doi.org/10.1089/jpm.2018.0099DOI Listing
July 2018

Defining the Elements of Early Palliative Care That Are Associated With Patient-Reported Outcomes and the Delivery of End-of-Life Care.

J Clin Oncol 2018 04 23;36(11):1096-1102. Epub 2018 Feb 23.

Michael Hoerger and Laura M. Perry, Tulane Cancer Center, New Orleans, LA; Joseph A. Greer, Vicki A. Jackson, Elyse R. Park, Areej El-Jawahri, Emily R. Gallagher, Juliet Jacobsen, and Jennifer S. Temel, Massachusetts General Hospital Cancer Center, Harvard Medical School, Boston, MA; William F. Pirl, Sylvester Comprehensive Cancer Center/University of Miami, Miami, FL; and Teresa Hagan, University of Pittsburgh, Pittsburgh, PA.

Purpose We describe the key elements of early palliative care (PC) across the illness trajectory and examine whether visit content was associated with patient-reported outcomes and end-of-life care. Methods We performed a secondary analysis of patients with newly diagnosed advanced lung or noncolorectal GI cancer (N = 171) who were randomly assigned to receive early PC. Participants attended at least monthly visits with board-certified PC physicians and advanced practice nurses at Massachusetts General Hospital. PC clinicians completed surveys documenting visit content after each encounter. Patients reported quality of life (Functional Assessment of Cancer Therapy-General) and mood (Hospital Anxiety and Depression Scale and Patient Health Questionnaire-9) at baseline and 24 weeks. End-of-life care data were abstracted from the electronic health record. We summarized visit content over time and used linear and logistic regression to identify whether the proportion of visits addressing a content area was associated with patient-reported outcomes and end-of-life care. Results We analyzed data from 2,921 PC visits, most of which addressed coping (64.2%) and symptom management (74.5%). By 24 weeks, patients who had a higher proportion of visits that addressed coping experienced improved quality of life ( P = .02) and depression symptoms (Depression subscale of the Hospital Anxiety and Depression Scale, P = .002; Patient Health Questionnaire-9, P = .004). Patients who had a higher proportion of visits address treatment decisions were less likely to initiate chemotherapy ( P = .02) or be hospitalized ( P = .005) in the 60 days before death. Patients who had a higher proportion of visits addressing advance care planning were more likely to use hospice ( P = .03). Conclusion PC clinicians' focus on coping, treatment decisions, and advance care planning is associated with improved patient outcomes. These data define the key elements of early PC to enable dissemination of the integrated care model.
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http://dx.doi.org/10.1200/JCO.2017.75.6676DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5891131PMC
April 2018

"I'd Recommend …" How to Incorporate Your Recommendation Into Shared Decision Making for Patients With Serious Illness.

J Pain Symptom Manage 2018 04 2;55(4):1224-1230. Epub 2018 Jan 2.

Department of Palliative Care and Geriatrics, Massachusetts General Hospital, Harvard Medical School, Boston, Massachusetts, USA.

Patients and families facing serious illness often want and need their clinicians to help guide medical decision making by offering a recommendation. Yet clinicians worry that recommendations are not compatible with shared decision making and feel reluctant to offer them. We describe an expert approach to formulating a recommendation using a shared decision-making framework. We offer three steps to formulating a recommendation: 1) evaluate the prognosis and treatment options; 2) understand the range of priorities that are important to your patient given the prognosis; and 3) base your recommendation on the patient's priorities most compatible with the likely prognosis and available treatment options.
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http://dx.doi.org/10.1016/j.jpainsymman.2017.12.488DOI Listing
April 2018

Role of Patient Coping Strategies in Understanding the Effects of Early Palliative Care on Quality of Life and Mood.

J Clin Oncol 2018 01 15;36(1):53-60. Epub 2017 Nov 15.

Joseph A. Greer, Jamie M. Jacobs, Areej El-Jawahri, Ryan D. Nipp, Emily R. Gallagher, Elyse R. Park, Alona Muzikansky, Juliet C. Jacobsen, Vicki A. Jackson, and Jennifer S. Temel, Massachusetts General Hospital and Harvard Medical School, Boston, MA; and William F. Pirl, Sylvester Comprehensive Cancer Center and University of Miami, Miami, FL.

Purpose The early integration of oncology and palliative care (EIPC) improves quality of life (QOL) and mood for patients with advanced cancer. However, the mechanisms by which EIPC benefits these outcomes remain unclear. We therefore examined whether EIPC improved patients' coping strategies and if changes in coping accounted for intervention effects on QOL and depressive symptoms. Patients and Methods For this secondary analysis of an EIPC trial, we examined data from 350 patients with newly diagnosed incurable lung or GI cancer. Participants completed assessments of QOL (Functional Assessment of Cancer Therapy-General), depressive symptoms (Patient Health Questionnaire-9), and coping (Brief COPE) at baseline and 24 weeks. We used linear regression to test intervention effects on use of coping strategies and mediation regression models with bias-corrected bootstrapping to examine whether improvements in coping mediated the effects of early palliative care on patient-reported outcomes. Results Compared with usual oncology care, EIPC significantly increased patient use of approach-oriented coping strategies ( B = 1.09; SE = 0.44; P = .01) and slightly reduced use of avoidant strategies ( B = -0.44; SE = 0.23; P = .06) from baseline to 24 weeks. Also, the increased use of approach-oriented coping and reduction in avoidant coping were associated with higher QOL and lower depressive symptoms at 24 weeks. The positive changes in approach-oriented coping, but not avoidant coping, significantly mediated the effects of EIPC on QOL (indirect effect, 1.27; 95% CI, 0.33 to 2.86) and depressive symptoms (indirect effect, -0.39; 95% CI, -0.87 to -0.08). Conclusion Patients with incurable cancer who received EIPC showed increased use of approach-oriented coping, which was associated with higher QOL and reduced depressive symptoms. Palliative care may improve these outcomes by providing patients with the skills to cope effectively with life-threatening illness.
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http://dx.doi.org/10.1200/JCO.2017.73.7221DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5756320PMC
January 2018

When a Patient Is Reluctant To Talk About It: A Dual Framework To Focus on Living Well and Tolerate the Possibility of Dying.

J Palliat Med 2018 03 3;21(3):322-327. Epub 2017 Oct 3.

1 Department of Palliative Care and Geriatrics, Harvard Medical School, Massachusetts General Hospital , Boston, Massachusetts.

Many patients with serious illness struggle to talk about the possibility of dying; yet basic prognostic awareness is crucial for informed decision making. In this article, we aim to help outpatient clinicians working with seriously ill patients ambivalent, uncomfortable, or fearful of further discussion about the future. We describe a dual framework that focuses on living well while acknowledging the possibility of dying and equips clinicians to help patients hold both possibilities. This dual framework facilitates the developmental process of living as fully as possible while also preparing for the possibility of dying.
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http://dx.doi.org/10.1089/jpm.2017.0109DOI Listing
March 2018
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