NCCN Guidelines® Insights: Palliative Care, Version 2.2021.

Palliative care has evolved to be an integral part of comprehensive cancer care with the goal of early intervention to improve quality of life and patient outcomes. The NCCN Guidelines for Palliative Care provide recommendations to help the primary oncology team promote the best quality of life possible throughout the illness trajectory for each patient with cancer. The NCCN Palliative Care Panel meets annually to evaluate and update recommendations based on panel members' clinical expertise and emerging scientific data. These NCCN Guidelines Insights summarize the panel's recent discussions and highlights updates on the importance of fostering adaptive coping strategies for patients and families, and on the role of pharmacologic and nonpharmacologic interventions to optimize symptom management.

The PACT Project: Feasibility of a Multidisciplinary, Multi-Faceted Intervention to Promote Goals of Care Conversations.

BACKGROUND: Patients living with serious illness generally want their physicians to facilitate Goals of Care conversations (GoCc), yet physicians may lack time and skills to engage in these conversations in the outpatient setting. The problem may be addressed by supporting multiple members of the clinical team to facilitate GoCc with the patient while admitted to the hospital. METHODS: A multi-modal training and mentored implementation program was developed. A group of 10 hospitals were recruited to participate. Each hospital selected a primary inpatient unit on which to start the intervention, then expanded to a secondary unit later in the project. The number of trained facilitators (champions) and the number of documented GoCc were tracked over time. RESULTS: Nine of 10 hospitals completed the 3-year project. Most of the units were general medical-surgical units. Forty-eight champions were trained at the kick-off conference, attended primarily by nurses, physicians, and social workers. By the end of the project, 153 champions had been trained. A total of 51 087 patients were admitted to PACT units with 85.4% being screened for eligibility. Of the patients who were eligible, over 68% had documented GoCc. CONCLUSION: A multifaceted quality improvement intervention focused on serious illness communication skills can support a diverse clinical workforce to facilitate inpatient GoCc over time.

Outcomes of a Multisite Mentored Implementation Approach to Promoting Goals of Care Conversations.

CONTEXT: The Preference-Aligned Communication and Treatment (PACT) Project is a multisite quality improvement effort that has been shown to increase the frequency of goals of care (GOC) conversations in hospitalized patients with serious illness. OBJECTIVES: To evaluate the effect of PACT on goal-discordant care and resource utilization. METHODS: Hospitals enrolled in a multiyear mentored implementation quality improvement initiative to facilitate GOC conversations for seriously ill hospitalized patients. The primary outcome was the percentage of patients with care discordant with stated preferences, assessed by comparing documented wishes to Medicare claims data for patients who were admitted to intervention units and died over the study period. Secondary outcomes evaluated end-of-life resource utilization by comparing Medicare claims data for intervention patients with propensity score-matched controls. RESULTS: In the 9 hospitals included in the study, 1347 intervention group patients were compared to 4019 in the control group. Rates of discordance between wishes and care were generally low in the intervention group. Compared to the control group, patients in the intervention group had lower costs (-976.05 dollars, P = 0.010), were less likely to be admitted to the ICU (OR 0.9, P = 0.005), less likely to be on a ventilator or undergo CPR or cardioversion, more likely to enroll in hospice (OR 1.81, P < 0.001) and had a longer hospice stay (3.35 more days, P = 0.041). CONCLUSION: A multisite mentored implementation quality improvement intervention for seriously ill hospitalized patients resulted in care aligned with goals and decreased resource utilization at the end of life.

Online palliative care curriculum: contextual adaptation for Nigerian healthcare workers.

OBJECTIVES: This study reports on a yearlong sequence of three periodic, virtual trainings in primary palliative care for healthcare professionals across Nigeria. Our overall objective was to determine the impact of the full course on participants' attitudes, knowledge, skills and plans to implement and deliver palliative care in their local contexts. METHODS: The curriculum for this programme was codeveloped by a team of USA and Nigerian palliative care professionals and delivered via three 3-day virtual sessions. Daily surveys, knowledge tests and end-of-training surveys were administered to participants electronically. Demographics, knowledge scores, confidence levels and self-reported achievement were analysed using descriptive statistics. RESULTS: Pretraining and post-training knowledge scores showed significant improvement with average gains of 10.3 percentage points in training 1 (p<0.001) to 11.7 percentage points in training 2 (p=0.01). More than three-quarters of participants improved their test scores. Most participants (89.4%-100%) agreed that they had achieved the daily learning objectives across all trainings. Nearly 100% of participants reported that they felt more empowered as healthcare workers, more confident in their decision-making and more comfortable communicating with patients and other healthcare workers about palliative care. CONCLUSIONS: Healthcare workers in Nigeria demonstrated increased knowledge and confidence in providing palliative care as a result of an adapted virtual training programme. Further research is needed to (1) demonstrate feasibility for online trainings in similar resource-limited settings and (2) evaluate impact on patient-centred outcomes.

Building the Nigerian Palliative Care Workforce: An Interdisciplinary Distance Learning Training Program.

Background: Education and capacity building in palliative care are greatly needed in Nigeria. Currently, two institutions integrate palliative care into the undergraduate medical curriculum and no post graduate training exists. A team from the University of Lagos in Nigeria and Northwestern University in the US collaborated to design, implement, and evaluate a 12-hour virtual palliative care training program for Nigerian health professionals. Objective: This study investigated the impact of the first session of the training program on healthcare professionals' knowledge, skills, attitudes, and confidence in palliative care. Methods: The Education in Palliative and End-of-Life (EPEC) curriculum and the Kenya Hospices and Palliative Care Association (KEHPCA) curriculum were used as foundations for the program and adapted for the Nigerian context. Delivered online, the training focused on goals of palliative care, whole patient assessment, communication skills, pain management, psychosocial issues, palliative care in COVID, oncology, and HIV. A mixed-methods evaluation based on Kirkpatrick's evaluation framework was used and data were gathered from surveys and focus groups. Findings: Thirty-five health professionals completed the training. The training had a positive impact on knowledge, skills, and attitudes. Confidence in providing end-of-life care increased from 27.3% to 92.9% while confidence in prescribing medication to relieve symptoms at the end of life increased from 42.9% to 92.0%. Performance on multiple-choice knowledge tests increased by 10% (p < 0.01). All participants stated that they would recommend the program to a peer while 96.4% reported the program was relevant to the Nigerian context. Qualitative analysis suggested that the training would help participants provide more holistic care for patients, communicate better, and change how they interacted with families. Topics to be addressed in future training were identified. Conclusions: This virtual training can be an important element in palliative care capacity building in Nigeria and represents a model for global health collaboration.

Revisiting patient-related barriers to cancer pain management in the context of the US opioid crisis.

ABSTRACT: Patient fear of addiction is a well-documented barrier to the use of analgesic medications for cancer pain control. Over the past 2 decades in the United States, an "opioid crisis" has arisen, accompanied by risk messages delivered through news outlets, public health education, and patient-provider communication. The purpose of this study was to determine if patient-related barriers to cancer pain management-specifically, fears of addiction-and related pain outcomes (pain severity, pain interference with daily life, and adequacy of pain management) have worsened over the last 20 years. A sample of 157 outpatients with active recurrent or active metastatic cancer completed the Barriers Questionnaire-II (BQ-II) and measures of pain and analgesic use. We identified 7 comparison studies published between 2002 and 2020 that reported patient-related barriers using the BQ-II. Significant linear relationships were found between later year of publication and greater fear of addiction (harmful effect subscale score, B = 0.0350, R2 = 0.0347, F1,637 = 23.19, P < 0.0001) and between year of publication and more pain management barriers overall (total BQ-II score, B = 0.039, R2 = 0.065, F1,923 = 73.79, P < 0.0001). Relationships between BQ-II scores (harmful effect and total) and pain outcomes did not change over time. Despite worsening in patient-related barriers, the proportion of patients with adequate vs inadequate analgesic use did not differ over time. Notably, 40% of participants reported inadequate analgesic use, a statistic that has not improved in 20 years. Additional research is necessary to clarify factors contributing to changing beliefs. Findings indicate a continuing need for clinical and possibly system/policy-level interventions to support adequate cancer pain management.

Perceptions of Bereaved Caregivers and Clinicians About End-of-Life Care for Patients With Destination Therapy Left Ventricular Assist Devices.

Background Patients with left ventricular assist devices (LVADs) implanted as destination therapy may receive suboptimal preparation for and care at the end of life, but there is limited understanding of the reasons for these shortcomings. Exploring perceptions of individuals (caregivers and clinicians) who are closely involved in the end-of-life experience with patients with destination therapy LVADs can help identify key opportunities for improving care. Methods and Results We conducted semistructured qualitative interviews with 7 bereaved caregivers of patients with destination therapy LVADs and 10 interdisciplinary LVAD clinicians. Interviews explored perceptions of preparing for end of life, communicating about end of life, and providing and receiving end-of-life care, and were analyzed using a 2-step team-based inductive approach to coding and analysis. Six themes pertaining to end-of-life experiences were derived: (1) timing end-of-life discussions in the setting of unpredictable illness trajectories, (2) prioritizing end-of-life preparation and decision-making, (3) communicating uncertainty while providing support and hope, (4) lack of consensus on responsibility for end-of-life discussions, (5) perception of the LVAD team as invincible, and (6) divergent perceptions of LVAD withdrawal. Conclusions This study revealed 6 unique aspects of end-of-life care for patients with destination therapy LVADs as reported by clinicians and caregivers. Themes coalesced around communication, team-based care, and challenges unique to patients with LVADs at end of life. Programmatic changes may address some aspects, including training clinicians in LVAD-specific communication skills. Other aspects, such as standardizing the role of the palliative care team and developing practical interventions that enable timely advance care planning during LVAD care, will require multifaceted interventions.

Trends in Place of Death for Cardiovascular Mortality Related to Heart Failure in the United States From 2003 to 2017.

BACKGROUND: The location of death is an important component of end-of-life care. However, contemporary trends in the location of death for cardiovascular deaths related to heart failure (CV-HF) and comparison to cancer deaths have not been fully examined. METHODS: We analyzed data from the Centers for Disease Control and Prevention's Control Wide-Ranging Online Data for Epidemiologic Research database between 2003 and 2017 to identify location of death for CV-HF and cancer deaths. The proportions of deaths that occurred in a hospice facility, home, and medical facility were tested for trends using linear regression. Odds ratios were calculated to determine the odds of death occurring in a hospice facility or home (versus a medical facility) stratified by sex and race. RESULTS: We identified 2 940 920 CV-HF and 8 852 066 cancer deaths. Increases were noted in the proportion of CV-HF deaths in hospice facilities (0.2% to 8.2%; Ptrend<0.001) and at home (20.6% to 30.7%; Ptrend<0.001), whereas decreases were noted in the proportion of deaths in medical facilities (44.5% to 31.0%; Ptrend<0.001) and nursing homes (30.8% to 25.7%; Ptrend<0.001). The odds of dying in a hospice facility (odds ratio, 1.79 [1.75-1.82]) or at home (odds ratio, 1.55 [1.53-1.56]) versus a medical facility was higher for whites versus blacks. The rate of increase in proportion of deaths in hospice facilities was higher for cancer deaths (ß=1.05 [95% CI, 0.97-1.12]) than for CV-HF deaths (ß=0.61 [95% CI, 0.58-0.64]). CONCLUSIONS: The proportion of CV-HF deaths occurring in hospice facilities is increasing but remains low. Disparities are noted whereby whites are more likely to die in hospice facilities or at home versus medical facilities compared with blacks. More research is needed to determine end-of-life preferences for patients with HF and identify the basis for these differences in location of death.

Pre-Ventricular Assist Device Palliative Care Consultation: A Qualitative Analysis.

INTRODUCTION: In 2013, the Centers for Medicare and Medicaid Services issued a mandate requiring that all patients undergoing destination therapy ventricular assist device (DT VAD) implantation have access to a palliative care team before surgery. Subsequently, many VAD programs implemented a mandatory preimplantation palliative care consultation for patients considering DT VAD. However, little is known about the quality of these consults. METHODS: All patients undergoing DT VAD implantation at Northwestern Memorial Hospital from October 30, 2013 (the Centers for Medicare and Medicaid Services decision date), through March 1, 2018, were included. Palliative care consultation notes were qualitatively analyzed for elements of "palliative care assessment" and preparedness planning. RESULTS: Sixty-eight preimplantation palliative care consultations were analyzed. Fifty-six percent of the consults occurred in the intensive care unit, and the median time from consult to VAD implant was six days. General palliative care elements were infrequently discussed. Furthermore, the elements of preparedness planning-device failure, post-VAD health-related quality of life, device complications, and progressive comorbidities-were discussed in only 10%, 54%, 49%, and 12% of consultations, respectively. CONCLUSIONS: One-time preimplantation palliative care consultations at our institution do not lead to completion of preparedness planning or even general palliative care assessment. Further work is needed to determine the most effective way to integrate palliative care into preimplantation care.

Feasibility and Acceptability of a Best Supportive Care Checklist among Clinicians.

CONTEXT: Best supportive care (BSC) is often not standardized across sites, consistent with best evidence, or sufficiently described. We developed a consensus-based checklist to document BSC delivery, including symptom management, decision making, and care planning. We hypothesized that BSC can be feasibly documented with this checklist consistent with consolidated standards of reporting trials. OBJECTIVE: To determine feasibility/acceptability of a BSC checklist among clinicians. METHODS: To test feasibility of a BSC checklist in standard care, we enrolled a sample of clinicians treating patients with advanced cancer at four centers. Clinicians were asked to complete the checklist at eligible patient encounters. We surveyed enrollees regarding checklist use generating descriptive statistics and frequencies. RESULTS: We surveyed 15 clinicians and 9 advanced practice providers. Mean age was 41 (SD = 7.9). Mean years since fellowship for physicians was 7.2 (SD = 4.5). Represented specialties are medical oncology (n = 8), gynecologic oncology (n = 4), palliative care (n = 2), and other (n = 1). For "overall impact on your delivery of supportive/palliative care," 40% noted improved impact with using BSC. For "overall impact on your documentation of supportive/palliative care," 46% noted improvement. Impact on "frequency of comprehensive symptom assessment" was noted to be "increased" by 33% of providers. None noted decreased frequency or worsening impact on any measure with use of BSC. Regarding feasibility of integrating the checklist into workflow, 73% agreed/strongly agreed that checklists could be easily integrated, 73% saw value in integration, and 80% found it easy to use. CONCLUSION: Clinicians viewed the BSC checklist favorably illustrating proof of concept, minor workflow impact, and potential of benefit to patients.

Evaluation of a Mastery Learning Intervention on Hospitalists' Code Status Discussion Skills.

CONTEXT: Although code status discussions (CSD) occur frequently in the hospital setting, discussions often lack content necessary for informed decision making. Simulation-based mastery learning (SBML) has been used to improve clinical skills among resident physicians and may provide a novel way to improve hospitalists' CSD skills. OBJECTIVES: The objective of this pilot randomized controlled trial was to develop and evaluate a CSD SBML intervention for hospitalists. METHODS: Twenty hospitalists were randomized to control vs. a CSD SBML intervention. Hospitalists conducted a baseline standardized patient encounter (pretest) that was scored using a 19-item CSD checklist and controls completed a repeat standardized patient encounter six months later (post-test). Intervention group hospitalists received at least one two-hour training session featuring deliberate practice and feedback and were expected to meet a minimum passing score (MPS) on the post-test of 84% set by an expert panel. RESULTS: Only two of the 20 hospitalists met the MPS at pretest. Seventy percentage of intervention hospitalists achieved the MPS after a single training session. Post-test median checklist scores were higher for intervention hospitalists compared with controls (16.5 vs. 12.0, P = 0.0001). Intervention hospitalists were significantly more likely to ask about previous experiences with end-of-life decision making (70% vs. 20%, P = 0.03), explore values/goals (100% vs. 50%, P = 0.01), ask permission to make a recommendation regarding code status (60% vs. 0%, P = 0.003), and align recommendations with patient values/goals (90% vs. 40%, P = 0.02) than controls. CONCLUSION: Few hospitalists demonstrated mastery of CSD skills at baseline; SBML was an effective way to improve these skills.

Safety and benefit of discontinuing statin therapy in the setting of advanced, life-limiting illness: a randomized clinical trial.

IMPORTANCE: For patients with limited prognosis, some medication risks may outweigh the benefits, particularly when benefits take years to accrue; statins are one example. Data are lacking regarding the risks and benefits of discontinuing statin therapy for patients with limited life expectancy. OBJECTIVE: To evaluate the safety, clinical, and cost impact of discontinuing statin medications for patients in the palliative care setting. DESIGN, SETTING, AND PARTICIPANTS: This was a multicenter, parallel-group, unblinded, pragmatic clinical trial. Eligibility included adults with an estimated life expectancy of between 1 month and 1 year, statin therapy for 3 months or more for primary or secondary prevention of cardiovascular disease, recent deterioration in functional status, and no recent active cardiovascular disease. Participants were randomized to either discontinue or continue statin therapy and were monitored monthly for up to 1 year. The study was conducted from June 3, 2011, to May 2, 2013. All analyses were performed using an intent-to-treat approach. INTERVENTIONS: Statin therapy was withdrawn from eligible patients who were randomized to the discontinuation group. Patients in the continuation group continued to receive statins. MAIN OUTCOMES AND MEASURES: Outcomes included death within 60 days (primary outcome), survival, cardiovascular events, performance status, quality of life (QOL), symptoms, number of nonstatin medications, and cost savings. RESULTS: A total of 381 patients were enrolled; 189 of these were randomized to discontinue statins, and 192 were randomized to continue therapy. Mean (SD) age was 74.1 (11.6) years, 22.0% of the participants were cognitively impaired, and 48.8% had cancer. The proportion of participants in the discontinuation vs continuation groups who died within 60 days was not significantly different (23.8% vs 20.3%; 90% CI, -3.5% to 10.5%; P=.36) and did not meet the noninferiority end point. Total QOL was better for the group discontinuing statin therapy (mean McGill QOL score, 7.11 vs 6.85; P=.04). Few participants experienced cardiovascular events (13 in the discontinuation group vs 11 in the continuation group). Mean cost savings were $3.37 per day and $716 per patient. CONCLUSIONS AND RELEVANCE: This pragmatic trial suggests that stopping statin medication therapy is safe and may be associated with benefits including improved QOL, use of fewer nonstatin medications, and a corresponding reduction in medication costs. Thoughtful patient-provider discussions regarding the uncertain benefit and potential decrement in QOL associated with statin continuation in this setting are warranted. TRIAL REGISTRATION: clinicaltrials.gov Identifier: NCT01415934.