Demystifying Prognosis : Understanding the Science and Art of Prognostication.

The science of prognostication is emerging as a vital part of providing goal concordant patient care. Historically, modern medicine has tended to shy away from approaching prognostication as a core clinical skill, and prognosis as something to be shared directly with the patient. In recent years however, the medical field's shift towards a focus on patient autonomy and more openness in matters regarding end of life has propelled the study of prognostication into a more essential component of patient centered care. This calls for more emphasis on teaching the science of prognosis and the skill of prognostication as a core part of modern medical education. The following chapter aims to delve into the science of prognostication, explore the methods of formulating a prognosis, and discuss issues surrounding the communication of prognosis.

Understanding the Cures Act Information Blocking Rule in cancer care: a mixed methods exploration of patient and clinician perspectives and recommendations for policy makers.

BACKGROUND: The 21st Century Cures Act Interoperability and Information Blocking Rule was created to increase patient access to health information. This federally mandated policy has been met with praise and concern. However, little is known about patient and clinician opinions of this policy within cancer care. METHODS: We conducted a convergent parallel mixed methods study to understand patient and clinician reactions to the Information Blocking Rule in cancer care and what they would like policy makers to consider. Twenty-nine patients and 29 clinicians completed interviews and surveys. Inductive thematic analysis was used to analyze the interviews. Interview and survey data were analyzed separately, then linked to generate a full interpretation of the results. RESULTS: Overall, patients felt more positive about the policy than clinicians. Patients wanted policy makers to understand that patients are unique, and they want to individualize their preferences for receiving health information with their clinicians. Clinicians highlighted the uniqueness of cancer care, due to the highly sensitive information that is shared. Both patients and clinicians were concerned about the impact on clinician workload and stress. Both expressed an urgent need for tailoring implementation of the policy to avoid unintended harm and distress for patients. CONCLUSIONS: Our findings provide suggestions for optimizing the implementation of this policy in cancer care. Dissemination strategies to better inform the public about the policy and improve clinician understanding and support are recommended. Patients who have serious illness or diagnoses such as cancer and their clinicians should be included when developing and enacting policies that could have a significant impact on their well-being. Patients with cancer and their cancer care teams want the ability to tailor information release based on individual preferences and goals. Understanding how to tailor implementation of the Information Blocking Rule is essential for retaining its benefits and minimizing unintended harm for patients with cancer.

Palliative care utilization, transfusion burden, and end-of-life care for patients with multiple myeloma.

INTRODUCTION: Despite treatment advances, multiple myeloma (MM) remains a significant source of morbidity and mortality. We aimed to examine specialist palliative care (SPC) involvement and end-of-life care for patients with MM. METHODS: We assessed all deceased patients with a diagnosis of MM who received care at a single institution from January 2010 to December 2019 and assessed SPC involvement. RESULTS: We reviewed 456 deceased patients. Overall, 207 patients (45.4%) received SPC visits by clinicians during their disease, and 153 (33.5%) were on MM treatment in the month before death. Median time from SPC consultation to death was 1 month, with 42 (9.2%) of patients receiving SPC visits 6 or more months before death. Amongst the patients for which a place of death was reported (351), 117 (33.3%) died in the acute care setting. Outpatient SPC did not correlate with a reduction of death in the acute care setting. In the group of patients who received outpatient SPC, 22/84 (26.2%) died in an acute care setting, whereas 95/267 (35.5%) patients who did not receive outpatient SPC also died in an acute care setting, (p = .11). CONCLUSION: In our analysis of the entire trajectory of the MM patient experience from diagnosis to death, we found low rates of SPC involvement and a significant proportion of patients receiving aggressive care at end-of-life. While there is no clear correlation that SPC involvement impacted the rate of acute care deaths or decreased utilization of MM treatment in the last month of life, further prospective research on optimal utilization of SPC is required.

Visitation policies at NCI-designated comprehensive cancer centers during the COVID-19 pandemic.

PURPOSE: Family/caregiver visitation provides critical support for patients confronting cancer and is associated with positive outcomes. However, the COVID-19 pandemic brought historic disruptions including widespread visitation restrictions. Here, we characterize in-depth the visitor policies of NCI-designated comprehensive cancer centers (CCCs) and analyze geographic/temporal patterns across CCCs. METHODS: The public-facing CCC websites, including archived webpages, were reviewed to abstract initial visitation policies and revisions, including end-of-life (EoL) exceptions and timing of visitation restrictions relative to regional lockdowns. Chi-squared and Fisher's exact tests were employed to analyze associations between geographic region, timing, and severity of restrictions. RESULTS: Most CCCs (n=43, 86%) enacted visitation restrictions between March 15 and April 15, 2020. About half barred all visitors for COVID-negative inpatients (n=24, 48%) or outpatients (n=26, 52%). Most (n=36, 72%) prohibited visitors for patients with confirmed/suspected COVID-19. Most (n=40, 80%) published EoL exceptions but the specifics were highly variable. The median time from initial restrictions to government-mandated lockdowns was 1 day, with a wide range (25 days before to 26 days after). There was no association between timing of initial restrictions and geographic location (p=0.14) or severity of inpatient policies (p=1.0), even among centers in the same city. Outpatient policies published reactively (after lockdown) were more restrictive than those published proactively (p=0.04). CONCLUSION: CCCs enacted strict but strikingly variable COVID-19 visitation restrictions, with important implications for patients/families seeking cancer care. A unified, evidence-based approach to visitation policies is needed to balance proven infection control measures with the needs of patients and families.

Correction: Documenting Social Media Engagement as Scholarship: A New Model for Assessing Academic Accomplishment for the Health Professions.

[This corrects the article DOI: 10.2196/25070.].

Documenting Social Media Engagement as Scholarship: A New Model for Assessing Academic Accomplishment for the Health Professions.

BACKGROUND: The traditional model of promotion and tenure in the health professions relies heavily on formal scholarship through teaching, research, and service. Institutions consider how much weight to give activities in each of these areas and determine a threshold for advancement. With the emergence of social media, scholars can engage wider audiences in creative ways and have a broader impact. Conventional metrics like the h-index do not account for social media impact. Social media engagement is poorly represented in most curricula vitae (CV) and therefore is undervalued in promotion and tenure reviews. OBJECTIVE: The objective was to develop crowdsourced guidelines for documenting social media scholarship. These guidelines aimed to provide a structure for documenting a scholar's general impact on social media, as well as methods of documenting individual social media contributions exemplifying innovation, education, mentorship, advocacy, and dissemination. METHODS: To create unifying guidelines, we created a crowdsourced process that capitalized on the strengths of social media and generated a case example of successful use of the medium for academic collaboration. The primary author created a draft of the guidelines and then sought input from users on Twitter via a publicly accessible Google Document. There was no limitation on who could provide input and the work was done in a democratic, collaborative fashion. Contributors edited the draft over a period of 1 week (September 12-18, 2020). The primary and secondary authors then revised the draft to make it more concise. The guidelines and manuscript were then distributed to the contributors for edits and adopted by the group. All contributors were given the opportunity to serve as coauthors on the publication and were told upfront that authorship would depend on whether they were able to document the ways in which they met the 4 International Committee of Medical Journal Editors authorship criteria. RESULTS: We developed 2 sets of guidelines: Guidelines for Listing All Social Media Scholarship Under Public Scholarship (in Research/Scholarship Section of CV) and Guidelines for Listing Social Media Scholarship Under Research, Teaching, and Service Sections of CV. Institutions can choose which set fits their existing CV format. CONCLUSIONS: With more uniformity, scholars can better represent the full scope and impact of their work. These guidelines are not intended to dictate how individual institutions should weigh social media contributions within promotion and tenure cases. Instead, by providing an initial set of guidelines, we hope to provide scholars and their institutions with a common format and language to document social media scholarship.

An Educational Needs Assessment for Outpatient Palliative Care Clinicians.

Introduction: As the field of palliative medicine continues to grow in community-based settings, outpatient palliative care clinics have become an important site for providing upstream palliative care to patients and families. It is unclear whether current training models, focused predominantly on the inpatient setting, adequately prepare clinicians for outpatient palliative care practice. Methods: We performed an online educational needs assessment survey of physicians and advanced practice providers working in outpatient palliative care clinics. Survey questions focused on the importance of specific palliative care knowledge, skills, and attitudes in outpatient practice using the Accreditation Council of Graduate Medical Education Hospice and Palliative Medicine (HPM) curricular milestones to guide survey development. We also explored clinician perception of training adequacy and current educational needs relevant to outpatient practice. Results: One hundred sixty-four clinicians, including 122 (74.4%) physicians, 32 (19.5%) nurse practitioners, and 8 (4.9%) physician assistants, completed our survey. Clinicians had a median of 10 years of HPM experience and 6 years of outpatient experience. We identified two main areas of perceived knowledge or skill deficit: navigating insurance and prior authorizations and co-management of pain and opioid use disorder. Conclusion: Addressing gaps in education and preparedness for outpatient practice is essential to improve clinician competence and efficiency as well as patient care, safety, and care coordination. This study identifies practice management and opioid stewardship as potential targets for educational interventions. The development of curricula related to these outpatient skills may improve clinicians' ability to provide safe, patient-centered care with confidence.

Palliative Care Practice During the COVID-19 Pandemic: A Descriptive Qualitative Study of Palliative Care Clinicians.

CONTEXT: COVID-19 created unprecedented demand for palliative care at a time when in-person communication was highly restricted, straining efforts to care for patients and families. OBJECTIVES: To qualitatively explore the challenges presented by the COVID-19 pandemic from the perspective of palliative care clinicians. Specifically we sought to: 1) Describe the strategies adopted by palliative care clinicians to cope with new challenges including patient and clinician isolation, prognostication of an emergent disease, and rapidly rising numbers of severely ill patients; 2) Identify additions or adjustments to in-person and system-related palliative care training, methods, and tools made during pandemics. METHODS: This descriptive qualitative study utilized a thematic approach for data analysis of individual, semi-structured interviews with palliative care clinicians (n = 25). Codes, categories, and emerging themes were identified through an iterative, comparative method. Methods align with the Consolidated Criteria for Reporting Qualitative Research (COREQ) RESULTS: A theme of "Expanding the reach of palliative care for today and the future" was identified with three subthemes: 1) Redefining attitudes and hardship due to collective uncertainty, 2) Breaking with the past towards integrated concept of palliative care, and 3) Building capacity through primary palliative care training. CONCLUSION: COVID-19 forced hospital systems to consider the inclusion of palliative care in unforeseen ways due to an uncontrollable, unpredictable disease. Faced with unprecedented uncertainty, palliative care clinicians utilized strategies for integration and innovation across hospitals, particularly in intensive care units and emergency departments. A need to build capacity through increased primary palliative care access and training was identified.

Management of Urgent Medical Conditions at the End of Life.

Medical emergencies at the end of life require recognition of patients at risk, so that a comprehensive assessment and plan of care can be put in place. Frequently, the interventions depend on the patient's underlying prognosis, location of care, and goals of care. The mere presence of a medical emergency often rapidly changes an estimated prognosis. Education of the patient and family may help empower them to adequately handle many situations when clinicians are not available.

The Role of a Symptom Assessment Tool in Shaping Patient-Physician Communication in Palliative Care.

CONTEXT: Patients with cancer experience many symptoms that disrupt quality of life, and symptom communication and management can be challenging. The Edmonton Symptom Assessment System (ESAS) was developed to standardize assessment and documentation of symptoms, yet research is needed to understand patients' and caregivers' experiences using the tool and its ability to impact patient-provider aligned care. OBJECTIVES: The objective of this study was to understand how the ESAS shapes communication between patients and providers by exploring patients' and caregivers' experiences using the ESAS and assessing the level of agreement in symptom assessment between patients and palliative care physicians. METHODS: This study used a mixed-methods design. Thirty-one semistructured interviews were conducted and audio-recorded with patients (n = 18) and caregivers (n = 13). Data were analyzed following a social constructionist grounded theory approach. Patient and provider ESAS scores were obtained by medical chart review. Intraclass correlation coefficients were used to assess the level of agreement between patient-completed ESAS scores and provider-completed ESAS scores. RESULTS: Participants reported that the ESAS was a beneficial tool in establishing priorities for symptom control and guiding the appointment with the palliative care physician, despite challenges in completing the ESAS. Filling out the ESAS can also help patients more clearly identify their priorities before meeting with their physician. There was a good to excellent level of agreement between patients and physicians in all symptoms analyzed. CONCLUSION: The ESAS is beneficial in enhancing symptom communication when used as a guide to identify and understand patients' main concerns.

Palliative Care's Role Managing Cancer Pain During the Opioid Crisis: A Qualitative Study of Patients, Caregivers, and Clinicians.

CONTEXT: Patients with cancer face symptoms because of disease and treatment, and pain is common and complex. The opioid crisis may complicate patients' and clinicians' experiences of managing pain in cancer care. OBJECTIVES: In our study of perceptions and experiences with palliative care (PC) at an outpatient cancer center, we examined communication around symptom management throughout cancer care, and pain and its management emerged as particularly salient. The objective of this article is to describe, from the perspectives of patients, caregivers, and oncology health care professionals, the role of PC in navigating the complicated dynamics of pain management amidst the opioid crisis. METHODS: A qualitative descriptive study with grounded theory components was designed to investigate experiences with and perceptions of specialist PC and symptom management, including pain. Interviews were audiorecorded and transcribed, and focused coding identified themes related to pain and pain management from all three perspectives. RESULTS: About 44 patients, caregivers, and non-PC health care professionals completed interviews. Patients with cancer and their caregivers had many concerns about pain management and were specifically concerned about opioid use and stigma. For patients, PC improved pain management and helped to destigmatize appropriate pain management. Oncology clinicians reported that partnering with PC facilitated complex pain management and also provided moral support around difficult opioid recommendations for patients. CONCLUSION: PC offers the potential to uniquely support both patients and other oncology professionals in optimally navigating the complexity around pain management for cancer care in the midst of the opioid crisis.

Prevalence and Predictors of Burnout Among Hospice and Palliative Care Clinicians in the U.S.

CONTEXT: Many clinical disciplines report high rates of burnout, which leads to low quality of care. Palliative care clinicians routinely manage patients with significant suffering, aiming to improve quality of life. As a major role of palliative care clinicians involves educating patients and caregivers regarding identifying priorities and balancing stress, we wondered how clinician self-management of burnout matches against the emotionally exhaustive nature of the work. OBJECTIVES: We sought to understand the prevalence and predictors of burnout using a discipline-wide survey. METHODS: We asked American Academy of Hospice and Palliative Medicine clinician members to complete an electronic survey querying demographic factors, job responsibilities, and the Maslach Burnout Inventory. We performed univariate and multivariable regression analyses to identify predictors of high rates of burnout. RESULTS: We received 1357 responses (response rate 30%). Overall, we observed a burnout rate of 38.7%, with higher rates reported by nonphysician clinicians. Most burnout stemmed from emotional exhaustion, with depersonalization comprising a minor portion. Factors associated with higher odds of burnout include nonphysician clinical roles, working in smaller organizations, working longer hours, being younger than 50 years of age, and working weekends. We did not observe different rates between palliative care clinicians and hospice clinicians. Higher rated self-management activities to mitigate burnout include participating in interpersonal relationships and taking vacations. CONCLUSION: Burnout is a major issue facing the palliative care clinician workforce. Strategies at the discipline-wide and individual levels are needed to sustain the delivery of responsive, available, high-quality palliative care for all patients with serious illness.

Palliative medicine review: prognostication.

Prognostication, along with diagnosis and treatment, is a traditional core clinical skill of the physician. Many patients and families receiving palliative care want information about life expectancy to help plan realistically for their futures. Although underappreciated, prognosis is, or at least should be, part of every clinical decision. Despite this crucial role, expertise in the art and science of prognostication diminished during the twentieth century, due largely to the ascendancy of accurate diagnostic tests and effective therapies. Consequently, "Doctor, how long do I have?" is a question most physicians find unprepared to answer effectively. As we focus on palliative care in the twenty-first century, prognostication will need to be restored as a core clinical proficiency. The discipline of palliative medicine can provide leadership in this direction. This paper begins by discussing a framework for understanding prognosis and how its different domains might be applied to all patients with life limiting illness, although the main focus of the paper is predicting survival in patients with cancer. Examples of prognostic tools are provided, although the subjective assessment of prognosis remains important in the terminally ill. Other issues addressed include: the importance of prognostication in terms of clinical decision-making, discharge planning, and care planning; the impact of prognosis on hospice referrals and patient/family satisfaction; and physicians' willingness to prognosticate.

Prevalence and Predictors of Burnout Among Hospice and Palliative Care Clinicians in the U.S.

CONTEXT: Many clinical disciplines report high rates of burnout, which lead to low quality of care. Palliative care clinicians routinely manage patients with significant suffering, aiming to improve quality of life. As a major role of palliative care clinicians involves educating patients and caregivers regarding identifying priorities and balancing stress, we wondered how clinician self-management of burnout matches against the emotionally exhaustive nature of the work. OBJECTIVES: We sought to understand the prevalence and predictors of burnout using a discipline-wide survey. METHODS: We asked American Academy of Hospice and Palliative Medicine clinician members to complete an electronic survey querying demographic factors, job responsibilities, and the Maslach Burnout Inventory. We performed univariate and multivariate regression analyses to identify predictors of high rates of burnout. RESULTS: We received 1357 responses (response rate 30%). Overall, we observed a burnout rate of 62%, with higher rates reported by nonphysician clinicians. Most burnout stemmed from emotional exhaustion, with depersonalization comprising a minor portion. Factors associated with higher rates of burnout include working in smaller organizations, working longer hours, being younger than 50 years, and working weekends. We did not observe different rates between palliative care clinicians and hospice clinicians. Higher rated self-management activities to mitigate burnout include participating in interpersonal relationships and taking vacations. CONCLUSIONS: Burnout is a major issue facing the palliative care clinician workforce. Strategies at the discipline-wide and individual levels are needed to sustain the delivery of responsive, available, high-quality palliative care for all patients with serious illness.

Palliative Care of Urologic Patients at End of Life.

This article focuses on the issues facing patients with advanced and terminal urologic illness, from the framework of care planning based on defining patient-specific and family-specific goals of care, to palliative management strategies for common symptoms and syndromes that these patients and their families experience. This article also focuses on the management of common urologic issues that may arise in the course of care for all patients at the end of life, as well as the impact of these conditions on caregivers.