Social Deprivation and End-of-Life Care Use Among Adults With Cancer.

PURPOSE: Socioeconomic differences are partially responsible for racial inequities in cancer outcomes, yet the association of area-level socioeconomic disadvantage and race with end-of-life (EOL) cancer care quality is poorly understood. METHODS: This retrospective study used electronic medical records from an academic health system to identify 33,635 adults with cancer who died between 2013 and 2019. Using multivariable logistic regression, we examined associations between decedent characteristics and EOL care, including emergency department (ED) visits, intensive care unit (ICU) stays, palliative care consultation (PCC), hospice order, and in-hospital deaths. Social deprivation index was used to measure socioeconomic disadvantages. RESULTS: Racially minoritized decedents had higher odds of ICU stay than the least deprived White decedents (eg, other race Q3: aOR, 2.06 [99% CI, 1.26 to 0.3.39]). White and Black decedents from more deprived areas had lower odds of ED visit (White Q3: aOR, 0.382 [99% CI, 0.263 to 0.556]; Black Q3: aOR, 0.566 [99% CI, 0.373 to 0.858]) than least deprived White decedents. Compared with White decedents living in least deprived areas, racially minoritized decedents had higher odds of receiving PCC and hospice order, whereas White decedents in most deprived areas had lower odds of PCC (aOR, 0.727 [99% CI, 0.592 to 0.893]) and hospice order (aOR, 0.845 [99% CI, 0.724 to 0.986]). Greater deprivation was associated with greater odds of hospital death relative to least deprived White decedents, but only among minoritized decedents (eg, Black Q4: aOR, 2.16 [99% CI, 1.82 to 2.56]). CONCLUSION: Area-level socioeconomic disadvantage is not uniformly associated with poorer EOL cancer care, with differences among decedents of different racial groups.

Emergency Palliative Care: Acute Presentation of a Nonsurvivable Condition.

In this first segment of the emergency palliative care case series, we present a patient who arrives to the emergency department (ED) with signs of impending death in the setting of a newly diagnosed nonsurvivable condition. The patient has a history of chronic and serious illness including metastatic lung cancer, but her ED presentation is prompted by new symptoms of abdominal pain and diarrhea that are not immediately attributable to her known history and reflect the onset of a catastrophic process. Palliative care consultation is requested after surgery determines that that patient is not a candidate for surgical intervention. The palliative care provider plays an important role in supporting aggressive symptom management, elucidating goals of care, and rapidly facilitating disposition.

Barriers of Acceptance to Hospice Care: a Randomized Vignette-Based Experiment.

BACKGROUND: The per diem financial structure of hospice care may lead agencies to consider patient-level factors when weighing admissions. OBJECTIVE: To investigate if treatment cost, disease complexity, and diagnosis are associated with hospice willingness to accept patients. DESIGN: In this 2019 online survey study, individuals involved in hospice admissions decisions were randomized to view one of six hypothetical patient vignettes: "high-cost, high-complexity," "low-cost, high-complexity," and "low-cost, low-complexity" within two diseases: heart failure and cystic fibrosis. Vignettes included demographics, prognoses, goals, and medications with costs. Respondents indicated their perceived likelihood of acceptance to their hospice; if likelihood was <100%, respondents were asked the barriers to acceptance. We used bivariate tests to examine associations between demographic, clinical, and organizational factors and likelihood of acceptance. PARTICIPANTS: Individuals involved in hospice admissions decisions MAIN MEASURES: Likelihood of acceptance to hospice care KEY RESULTS: N=495 (76% female, 53% age 45-64). Likelihoods of acceptance in cystic fibrosis were 79.8% (high-cost, high-complexity), 92.4% (low-cost, high-complexity), and 91.5% (low-cost, low-complexity), and in heart failure were 65.9% (high-cost, high-complexity), 87.3% (low-cost, high-complexity), and 96.6% (low-cost, low-complexity). For both heart failure and cystic fibrosis, respondents were less likely to accept the high-cost, high-complexity patient than the low-cost, high-complexity patient (65.9% vs. 87.3%, 79.8% vs. 92.4%, both p<0.001). For heart failure, respondents were less likely to accept the low-cost, high-complexity patient than the low-cost, low-complexity patient (87.3% vs. 96.6%, p=0.004). Treatment cost was the most common barrier for 5 of 6 vignettes. CONCLUSIONS: This study suggests that patients receiving expensive and/or complex treatments for palliation may have difficulty accessing hospice.

Death Anxiety and Correlates in Cancer Patients Receiving Palliative Care.

Background: Death anxiety is powerful, potentially contributes to suffering, and yet has to date not been extensively studied in the context of palliative care. Availability of a validated Death Anxiety and Distress Scale (DADDS) opens the opportunity to better assess and redress death anxiety in serious illness. Objective: We explored death anxiety/distress for associations with physical and psychosocial factors. Design: Ancillary to a randomized clinical trial (RCT) of Dignity Therapy (DT), we enrolled a convenience sample of 167 older adults in the United States with cancer and receiving outpatient palliative care (mean age 65.9 [7.3] years, 62% female, 84% White, 62% stage 4 cancer). They completed the DADDS and several measures for the stepped-wedged RCT, including demographic factors, religious struggle, dignity-related distress, existential quality of life (QoL), and terminal illness awareness (TIA). Results: DADDS scores were generally unrelated to demographic factors (including religious affiliation, intrinsic religiousness, and frequency of prayer). DADDS scores were positively correlated with religious struggle (p < 0.001) and dignity-related distress (p < 0.001) and negatively correlated with existential QoL (p < 0.001). TIA was significantly nonlinearly associated with both the total DADDS (p = 0.007) and its Finitude subscale (p ≤ 0.001) scores. There was a statistically significant decrease in Finitude subscale scores for a subset of participants who completed a post-DT DADDS (p = 0.04). Conclusions: Findings, if replicable, suggest that further research on death anxiety and prognostic awareness in the context of palliative medicine is in order. Findings also raise questions about the optimal nature and timing of spiritual and psychosocial interventions, something that might entail evaluation or screening for death anxiety and prognostic awareness for maximizing the effectiveness of care.

A Cost-Effective Analysis of Motivational Interviewing with Palliative Care Versus Usual Care: Results from the Living Well Project.

Little is known about the impact of early palliative care (EPC) combined with motivational interviewing (MI) for persons living with AIDS (PWA). We compared the cost and quality-adjusted life-years (QALYs) of EPC + MI (n = 61) versus usual care (UC) (n = 60) for patients with AIDS, not on antiretroviral medications, enrolled into the Living Well Project trial. Data on clinic, emergency department, and hospital visits were collected through self-report and billing records. Risk-adjusted average annual health care costs were estimated using a generalized linear model with a gamma log-link function. QALYs were calculated using the SF-12v2. Cost-effectiveness was defined as cost per QALY gained. Estimated intervention costs were $165 per participant. EPC + MI reduced costs by 33% (AOR = 0.67; CI 95%: 0.15, 0.93). QALYs did not differ between groups. Results suggest EPC + MI for PWA is cost-saving and maintains quality of life compared to UC due to reduced hospital and ED costs.

Oncologic emergencies and urgencies: A comprehensive review.

Patients with advanced cancer generate 4 million visits annually to emergency departments (EDs) and other dedicated, high-acuity oncology urgent care centers. Because of both the increasing complexity of systemic treatments overall and the higher rates of active therapy in the geriatric population, many patients experiencing acute decompensations are frail and acutely ill. This article comprehensively reviews the spectrum of oncologic emergencies and urgencies typically encountered in acute care settings. Presentation, underlying etiology, and up-to-date clinical pathways are discussed. Criteria for either a safe discharge to home or a transition of care to the inpatient oncology hospitalist team are emphasized. This review extends beyond familiar conditions such as febrile neutropenia, hypercalcemia, tumor lysis syndrome, malignant spinal cord compression, mechanical bowel obstruction, and breakthrough pain crises to include a broader spectrum of topics encompassing the syndrome of inappropriate antidiuretic hormone secretion, venous thromboembolism and malignant effusions, as well as chemotherapy-induced mucositis, cardiomyopathy, nausea, vomiting, and diarrhea. Emergent and urgent complications associated with targeted therapeutics, including small molecules, naked and drug-conjugated monoclonal antibodies, as well as immune checkpoint inhibitors and chimeric antigen receptor T-cells, are summarized. Finally, strategies for facilitating same-day direct admission to hospice from the ED are discussed. This article not only can serve as a point-of-care reference for the ED physician but also can assist outpatient oncologists as well as inpatient hospitalists in coordinating care around the ED visit.

Race Roundtable Series: Structural Racism in Palliative Care.

This series will focus on addressing the intersection of race and racism in palliative care through a series of roundtable discussions with interdisciplinary clinicians, researchers, educators, and leaders in palliative care. These short discussions are intended to stimulate readers to examine issues of race and racism within the field of hospice and palliative care - in the various forms that it appears - as well as serve as a continual call to action to facilitate and promote equity.

National Trends in Hospice Facility Deaths in the United States, 2003-2017.

CONTEXT: Hospice facilities are increasingly preferred as a location of death, but little is known about the characteristics of patients who die in these facilities in the U.S. OBJECTIVES: We sought to examine the trends and factors associated with death in a hospice facility. METHODS: Retrospective cross-sectional study using mortality data for years 2003-2017 for deaths attributed to natural causes in the U.S. RESULTS: The proportion of natural deaths occurring in hospice facilities increased from 0.2% in 2003 to 8.3% in 2017, resulting in nearly 1.7 million deaths during this time frame. Females had increased odds of hospice facility deaths (odds ratio [OR] = 1.04; 95% CI = 1.04, 1.05). Nonwhite race was associated with lower odds of hospice facility death (black [OR = 0.915; 95% CI = 0.890, 0.940]; Native American [OR = 0.559; 95% CI = 0.515, 0.607]; and Asian [OR = 0.655; 95% CI = 0.601, 0.713]). Being married was associated with hospice facility death (OR = 1.06; 95% CI = 1.04, 1.07). Older age was associated with increased odds of hospice facility death (85 and older [OR = 1.40; 95% CI = 1.39, 1.41]). Having at least some college education was associated with increased odds of hospice facility death (OR = 1.13; 95% CI = 1.11, 1.15). Decedents from cardiovascular disease had the lowest odds of hospice facility death (OR = 0.278; 95% CI = 0.274, 0.282). CONCLUSION: Hospice facility deaths increased among all patient groups; however, striking differences exist by age, sex, race, marital status, education level, cause of death, and geography. Factors underlying these disparities should be examined.

Allocating Scarce Health Care Resources During Pandemics: Making the Case for Patients with Advanced and Metastatic Cancer.

The oncology community is concerned that patients with cancer will be unfairly classified in pandemic allocation guidance. Past guidance either excluded patients with metastatic cancer from consideration or categorized them as having a survival of less than 1 year. Given recent improvements in treatments, we recommend that the prognosis of an individual patient with cancer be determined with input from a cancer specialist or, if this is impractical, that the presence of active metastatic solid cancer or relapsed hematologic malignancy is graded as a major comorbidity, with a likelihood that survival will be less than 5 years; severe limitation in physical functioning (3 or 4 on the Eastern Cooperative Oncology Group performance status) would define a patient with advanced cancer as having a severe comorbidity, with a likelihood of less than 1 year of survival. Cancer may be the "Emperor of all Maladies," but it is no longer a certain death sentence.

Palliative Care in Heart Transplantation.

The purpose of this article is to describe palliative care incorporation within the care of heart transplant patients. Palliative care is a holistic approach to care that includes symptom management and goal setting to improve patients' quality of life. Palliative care is designed to be used with patients who have chronic illness that impacts quality of life and should be incorporated early in the disease. All providers have a responsibility to be knowledgeable in palliative care approaches and to know when to refer a patient for specialty palliative care services. This article will describe palliative care, research study findings, and current professional guideline recommendations for patients. The article also describes challenges and barriers to the use of palliative care in heart transplant patients and strategies to address these challenges and barriers.

Dignity Therapy Led by Nurses or Chaplains for Elderly Cancer Palliative Care Outpatients: Protocol for a Randomized Controlled Trial.

BACKGROUND: Our goal is to improve psychosocial and spiritual care outcomes for elderly patients with cancer by optimizing an intervention focused on dignity conservation tasks such as settling relationships, sharing words of love, and preparing a legacy document. These tasks are central needs for elderly patients with cancer. Dignity therapy (DT) has clear feasibility but inconsistent efficacy. DT could be led by nurses or chaplains, the 2 disciplines within palliative care that may be most available to provide this intervention; however, it remains unclear how best it can work in real-life settings. OBJECTIVE: We propose a randomized clinical trial whose aims are to (1) compare groups receiving usual palliative care for elderly patients with cancer or usual palliative care with DT for effects on (a) patient outcomes (dignity impact, existential tasks, and cancer prognosis awareness); and (b) processes of delivering palliative spiritual care services (satisfaction and unmet spiritual needs); and (2) explore the influence of physical symptoms and spiritual distress on the outcome effects (dignity impact and existential tasks) of usual palliative care and nurse- or chaplain-led DT. We hypothesize that, controlling for pretest scores, each of the DT groups will have higher scores on the dignity impact and existential task measures than the usual care group; each of the DT groups will have better peaceful awareness and treatment preference more consistent with their cancer prognosis than the usual care group. We also hypothesize that physical symptoms and spiritual distress will significantly affect intervention effects. METHODS: We are conducting a 3-arm, pre- and posttest, randomized, controlled 4-step, stepped-wedge design to compare the effects of usual outpatient palliative care and usual outpatient palliative care along with either nurse- or chaplain-led DT on patient outcomes (dignity impact, existential tasks, and cancer prognosis awareness). We will include 560 elderly patients with cancer from 6 outpatient palliative care services across the United States. Using multilevel analysis with site, provider (nurse, chaplain), and time (step) included in the model, we will compare usual care and DT groups for effects on patient outcomes and spiritual care processes and determine the moderating effects of physical symptoms and spiritual distress. RESULTS: The funding was obtained in 2016, with participant enrollment starting in 2017. Results are expected in 2021. CONCLUSIONS: This rigorous trial of DT will constitute a landmark step in palliative care and spiritual health services research for elderly cancer patients. TRIAL REGISTRATION: ClinicalTrials.gov NCT03209440; https://clinicaltrials.gov/ct2/show/NCT03209440. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/12213.

Emergency Medical Services Provider Experiences of Hospice Care.

BACKGROUND: Growing numbers of emergency medical services (EMS) providers respond to patients who receive hospice care. The objective of this investigation was to assess the knowledge, attitudes, and experiences of EMS providers in the care of patients enrolled in hospice care. METHODS: We conducted a survey study of EMS providers regarding hospice care. We collected quantitative and qualitative data on EMS provider's knowledge, attitudes, and experiences in responding to the care needs of patients in hospice care. We used Chi-squared tests to compare EMS provider's responses by credential (Emergency Medical Technician [EMT] vs. Paramedic) and years of experience (0-5 vs. 5+). We conducted a thematic analysis to examine open-ended responses to qualitative questions. RESULTS: Of the 182 EMS providers who completed the survey (100% response rate), 84.1% had cared for a hospice patient one or more times. Respondents included 86 (47.3%) EMTs with Intermediate and Advanced training and 96 (52.7%) Paramedics. Respondent's years of experience ranged from 0-10+ years, with 99 (54.3%) providers having 0-5 years of experience and 83 (45.7%) providers having 5+ years of experience. There were no significant differences between EMTs and Paramedics in their knowledge of the care of these patients, nor were there significant differences (p < 0.05) between those with 0-5 and 5+ years of experience. Furthermore, 53 (29.1%) EMS providers reported receiving formal education on the care of hospice patients. A total of 36% respondents felt that patients in hospice care required a DNR order. In EMS providers' open-ended responses on challenges in responding to the care needs of hospice patients, common themes were family-related challenges, and the need for more education. CONCLUSION: While the majority of EMS providers have responded to patients enrolled in hospice care, few providers received formal training on how to care for this population. EMS providers have expressed a need for a formal curriculum on the care of the patient receiving hospice.

Living with Symptoms: A Qualitative Study of Black Adults with Advanced Cancer Living in Poverty.

Cancer is associated with disease-related and treatment-related symptoms. Little is known about the symptom experience of black individuals with advanced cancer especially those with limited financial resources. Therefore, the purpose of this study was to explore the symptom experience of black adults with advanced cancer living in poverty. This qualitative descriptive study focused on the perspectives of the participants experiencing at least two symptoms related to cancer. A purposive sample of 27 individuals receiving care at a public hospital in a southeastern city participated in the study. Semi-structured audiotaped interviews were conducted by two research interviewers. Content analysis was used to develop themes to describe the symptom experience. Two main themes emerged in terms of the participants' symptom experiences: (1) "living in pain," which included the overwhelming experience of pain, both physical and emotional, and (2) "symptoms associated with functioning in everyday life." Participants frequently used the context of activities in their daily lives to explain symptoms, including the effect of symptoms on the activities of eating, moving and doing, and communicating. People with advanced cancer work to negotiate a high frequency of multiple distressful symptoms of severe-to-moderate severity. Information gained from this study can help guide research in symptom science and provide direction for clinicians working with this minority group.

Shared Decision Making to Support the Provision of Palliative and End-of-Life Care in the Emergency Department: A Consensus Statement and Research Agenda.

BACKGROUND: Little is known about the optimal use of shared decision making (SDM) to guide palliative and end-of-life decisions in the emergency department (ED). OBJECTIVE: The objective was to convene a working group to develop a set of research questions that, when answered, will substantially advance the ability of clinicians to use SDM to guide palliative and end-of-life care decisions in the ED. METHODS: Participants were identified based on expertise in emergency, palliative, or geriatrics care; policy or patient-advocacy; and spanned physician, nursing, social work, legal, and patient perspectives. Input from the group was elicited using a time-staggered Delphi process including three teleconferences, an open platform for asynchronous input, and an in-person meeting to obtain a final round of input from all members and to identify and resolve or describe areas of disagreement. CONCLUSION: Key research questions identified by the group related to which ED patients are likely to benefit from palliative care (PC), what interventions can most effectively promote PC in the ED, what outcomes are most appropriate to assess the impact of these interventions, what is the potential for initiating advance care planning in the ED to help patients define long-term goals of care, and what policies influence palliative and end-of-life care decision making in the ED. Answers to these questions have the potential to substantially improve the quality of care for ED patients with advanced illness.

Opportunities and Challenges Facing the Integrated Physician Workforce of Emergency Medicine and Hospice and Palliative Medicine.

BACKGROUND: The American Board of Emergency Medicine joined nine other American Board of Medical Specialties member boards to sponsor the subspecialty of Hospice and Palliative Medicine; the first subspecialty examination was administered in 2008. Since then an increasing number of emergency physicians has sought this certification and entered the workforce. There has been limited discussion regarding the experiences and challenges facing this new workforce. DISCUSSION: We use excerpts from conversations with emergency physicians to highlight the challenges in hospice and palliative medicine training and practice that are commonly being identified by these physicians, at varying phases of their careers. The lessons learned from this initial dual-certified physician cohort in real practice fills a current literature gap. Practical guidance is offered for the increasing number of trainees and mid-career emergency physicians who may have an interest in the subspecialty pathway but are seeking answers to what a future integrated practice will look like in order to make informed career decisions. CONCLUSION: The Emergency and Hospice and Palliative Medicine integrated workforce is facing novel challenges, opportunities, and growth. The first few years have seen a growing interest in the field among emergency medicine resident trainees. As the dual certified workforce matures, it is expected to impact the clinical practice, research, and education related to emergency palliative care.

Palliative Care and Cardiovascular Disease and Stroke: A Policy Statement From the American Heart Association/American Stroke Association.

The mission of the American Heart Association/American Stroke Association includes increasing access to high-quality, evidence-based care that improves patient outcomes such as health-related quality of life and is consistent with the patients' values, preferences, and goals. Awareness of and access to palliative care interventions align with the American Heart Association/American Stroke Association mission. The purposes of this policy statement are to provide background on the importance of palliative care as it pertains to patients with advanced cardiovascular disease and stroke and their families and to make recommendations for policy decisions. Palliative care, defined as patient- and family-centered care that optimizes health-related quality of life by anticipating, preventing, and treating suffering, should be integrated into the care of all patients with advanced cardiovascular disease and stroke early in the disease trajectory. Palliative care focuses on communication, shared decision making about treatment options, advance care planning, and attention to physical, emotional, spiritual, and psychological distress with inclusion of the patient's family and care system. Our policy recommendations address the following: reimbursement for comprehensive delivery of palliative care services for patients with advanced cardiovascular disease and stroke; strong payer-provider relationships that involve data sharing to identify patients in need of palliative care, identification of better care and payment models, and establishment of quality standards and outcome measurements; healthcare system policies for the provision of comprehensive palliative care services during hospitalization, including goals of care, treatment decisions, needs of family caregivers, and transition to other care settings; and health professional education in palliative care as part of licensure requirements.

Respiratory Therapists' Experiences and Attitudes Regarding Terminal Extubations and End-of-Life Care.

BACKGROUND: Respiratory therapists (RTs) routinely care for patients with life-limiting illnesses and in some hospitals are responsible for terminal extubations. Data on how such experiences affect RTs are scarce. The objective of this work was to survey RTs at 2 academic medical centers about their experiences caring for patients with terminal extubations. METHODS: An online survey was distributed to the hospitals' RTs. Survey data included demographics and experiences with end-of-life care and terminal extubations. The survey was derived from previously published questionnaires plus input from hospital RT leaders. RESULTS: Sixty-five of 173 RTs (37.6%) responded. Of these, 42.4% were ≥50 y old, and 62.7% were female. 20.3% had ≤5 y experience; 52.5% had ≥16 y. 93.8% self-reported being involved in at least one terminal extubation; of those, 36.1% reported performing ≥20. Nearly half (47.5%) wanted to be involved in family meetings discussing terminal extubations, but just 6.6% were frequently involved. Only 32.3% felt that they received adequate education regarding terminal illness in RT school; 32.3% reported gathering this knowledge while working. 60.0% wanted more formal education around terminal patient care. 27.9% reported sometimes being uncomfortable with performing a terminal extubation; most of these rarely felt that they had the option not to perform the extubation. CONCLUSIONS: RTs are rarely involved in end-of-life discussions despite a desire to be, and they experience situations that generate discomfort. There is demand for more formal RT training around care for terminal patients. Clinical protocols that involve RTs in meetings before ventilator withdrawal should be considered.