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Best practices for left ventricular assist devices (LVADs) deactivation at end-of-life (EOL) have yet to be elucidated. We conducted a single-institution retrospective review of patients who died following LVAD deactivation between January 2017 and March 2020. Data were obtained from institutional databases and electronic health record and were analyzed using descriptive statistics. Fifty-eight patients (70% male, 70% African American, median age 62 years) were categorized by implant strategy: bridge therapy (BT, N = 22, 38%) or destination therapy (DT, N = 36, 62%). Clinical events leading to deactivation were categorized either acute ( e.g. , stroke [ N = 31, 53%]), gradual decline ( N = 12, 21%), or complications during index hospitalization ( N = 15, 26%). Implant strategy was not associated with clinical trajectory leading to EOL ( p = 0.67), hospital unit of death ( p = 0.13), or use of mechanical ventilation ( p = 0.69) or renal replacement therapy ( p = 0.81) during terminal hospitalization. Overall time from admission to code status change was mean 27.0 days (SD 30.3 days). Compared with BT patients, DT experienced earlier do-not-resuscitate (DNR) orders ( p ≤ 0.01) and shorter survival post-deactivation ( p ≤ 0.01). Deactivations after gradual decline tended to occur outside ICUs, compared with acute events or index implant-related complications ( p = 0.04). Implant strategy was not associated with differences in EOL experience except regarding timing of DNR order and survival post-deactivation.

Background Members of racial and ethnic minority groups have been disproportionately impacted by coronavirus-2019 (COVID-19). The objective of the study is to describe associations between race and ethnicity on clinical outcomes such as need for mechanical ventilation and mortality. Methods Retrospective cohort study of patients with severe COVID-19 infection admitted within a large, not-for-profit healthcare system in the mid-Atlantic region between March and July, 2020. Patient demographic data and clinical outcomes were abstracted from the electronic health record. Logistic regressions were performed to estimate associations between race and ethnicity and the clinical outcomes. Results The study population (N = 2931) was stratified into 1 of 3 subgroups: non-Hispanic White (n = 466), non-Hispanic Black (n = 1611), and Hispanic (n = 654). The average age of White, Black, and Hispanic patients was 69 ± 17.06, 64 ± 15.9, and 50 ± 15.53 years old, respectively ( P Conclusion Our analysis demonstrated that Hispanic patients were more likely require mechanical ventilation but had lower mortality when compared to White patients, with lower average age likely mediating this association. These findings emphasize the importance of outreach efforts to communities of color to increase prevention measures and vaccination uptake to reduce infection with COVID-19.

Background Many patients with American College of Cardiology/American Heart Association Stage D (advanced) heart failure are discharged home on chronic intravenous inotropic support (CIIS) as bridge to surgical therapy or as palliative therapy. This study analyzed the clinical trajectory of patients with advanced heart failure who were on home CIIS. Methods We conducted a single-institution, retrospective cohort study of patients on CIIS between 2010 and 2016 (n = 373), stratified by indication for initiation of inotropic support. Study outcomes were time from initiation of CIIS to cessation of therapy, time to death for patients who did not receive surgical therapy and rates of involvement with palliative care. Results Overall, patients received CIIS therapy for an average of 5.9 months (standard deviation [SD] 7.3). Patients on CIIS as palliative therapy died in an average of 6.2 months (SD 6.6) from the time of initiation of CIIS, and those on CIIS as bridge therapy who did not ultimately receive surgical therapy died after an average of 8.6 months (SD 9.3). Patients who received CIIS as bridge therapy were significantly less likely to receive palliative-care consultation than those on inotropes as palliative therapy, whether or not they underwent surgery. Conclusions In this large cohort of patients with advanced HF, patients who on CIIS as palliative therapy survived for 6.2 months, on average, with wide variation among patients. Patients who were on CIIS as bridge therapy but did not ultimately receive surgical therapy received less palliative care despite the high mortality rate in this subgroup.

Background: Hospitalized patients with advanced heart failure often experience acute and/or chronic pain. While virtual reality has been extensively studied across a wide range of clinical settings, no studies have yet evaluated potential impact on pain management on this patient population. Aim: To investigate the impact of a virtual reality experience on self-reported pain, quality-of-life, general distress, and satisfaction compared to a two-dimensional guided imagery active control. Design: Single-center prospective randomized controlled study. The primary outcome was the difference in pre- versus post-intervention self-reported pain scores on a numerical rating scale from 0 to 10. Secondary outcomes included changes in quality-of-life scores, general distress, and satisfaction with the intervention. Setting/participants: Between October 2018 and March 2020, 88 participants hospitalized with advanced heart failure were recruited from an urban tertiary academic medical center. Results: Participants experienced significant improvement in pain score after either 10 minutes of virtual reality (change from pre- to post −2.9 ± 2.6, p Conclusion: Virtual reality may be an effective nonpharmacologic adjuvant pain management intervention in hospitalized patients with heart failure. Trial Registration: ClinicalTrials.gov database (NCT04572425).

Over the past 20 years, the number of colleges offering programs in medical humanities has increased, and through the Medical Humanities Initiative at Georgetown University, this pilot study sought to understand students perceived benefits of a medical humanities curriculum. Based on a qualitative thematic analysis of free-response survey reflections from students enrolled in three unique medical humanities courses, six themes emerged. The themes help capture the role that a medical humanities education can play in shaping future clinicians and demonstrate that these courses not only provided a distinct teaching methodology from the scientific classroom but also appeared to deepen the students' understanding of the humanistic aspects of medicine and its many facets.

Use of continuous intravenous inotropic support (CIIS) strictly as palliative therapy for patients with ACC/AHA Stage D (end-stage) Heart Failure (HF) has increased significantly. The harms of CIIS therapy may detract from its benefits. To describe benefits (improvement in NYHA functional class) and harms (infection, hospitalization, days-spent-in-hospital) of CIIS as palliative therapy. Methods: Retrospective analysis of patients with end-stage HF initiated on CIIS as palliative therapy at an urban, academic center in the United States between 2014-2016. Clinical outcomes were extracted, and data were analyzed using descriptive statistics. Seventy-five patients, 72% male, 69% African American/Black, with a mean age 64.5 years ( SD = 14.5) met study criteria. Mean duration of CIIS was 6.5 months ( SD = 7.7). Most patients (69.3%) experienced improvement in NYHA functional class from class IV to class III. Sixty-seven patients (89.3%) were hospitalized during their time on CIIS, with a mean of 2.7 hospitalizations per patient ( SD = 3.3). One-third of patients (n = 25) required at least one intensive care unit (ICU) admission while on CIIS therapy. Eleven patients (14.7%) experienced catheter-related blood stream infection. Patients spent an average of 20.6% ( SD = 22.8), approximately 40 days, of their time on CIIS admitted to the study institution. Patients on CIIS as palliative therapy report improvement in functional class, survive 6.5 months following initiation, but spend a significant number of days in the hospital. Prospective studies quantifying the symptomatic benefit and the direct and indirect harms of CIIS as palliative therapy are warranted.

BACKGROUND: Palliative care (PC) in advanced heart failure (HF) aims to improve symptoms and quality of life (QOL), in part through medication management. The impact of PC on polypharmacy (>5 medications) remains unknown. METHODS AND RESULTS: We explored patterns of polypharmacy in the Palliative Care in HF (PAL-HF) randomized controlled trial of standard care versus interdisciplinary PC in advanced HF (N=150). We describe differences in medication counts between arms at 2, 6, 12, and 24 weeks for HF (12 classes) and PC (6 classes) medications. General linear mixed models were used to evaluate associations between treatment arm and polypharmacy over time. The median age of the patients was 72 (62–80) years, and 47% were female while 41% were Black. Overall, 48% had ischemic etiology, and 55% had an ejection fraction

The global prevalence of heart failure (HF) is increasing. Advancements in guideline-directed medical and device therapy have resulted in improved survival. Thus, there are more patients living - and living longer - with advanced HF. Only a small proportion of these patients are deemed appropriate for advanced surgical intervention (mechanical circulatory support or heart transplantation), and even if offered, some may decline such interventions if not aligned with their overall goals and values. Therefore, a growing number of patients with advanced HF receive chronic intravenous inotropic support (CIIS) for palliation of symptoms. Despite increased use, clinical evidence supporting use of palliative inotropes remains limited. However, available data suggest improvements in functional class, health-related quality of life (HRQoL) indicators, symptom burden, hemodynamic parameters, and possibly rehospitalization. While initial concerns regarding increased mortality have been assuaged in the modern era of guideline-directed medical therapy, palliative inotropes are certainly not without burden. Risks of infection and medication-related adverse effects, need for routine laboratory monitoring, frequent dressing changes, and presence of a reliable caregiver must be carefully considered prior to initiation. This review addresses pharmacology, guideline recommendations, benefits and burdens, considerations related to hospice and end-of-life care, and future directions of CIIS in advanced HF care.

Background Palliative care is an essential component of health responses in humanitarian settings, yet it remains largely unavailable in these settings, due to limited availability of palliative care training for healthcare professionals. Online training programs which connect experts to clinicians in the field have been proposed as an innovative strategy to build palliative care capacity humanitarian settings. Objective To describe the implementation and evaluate the impact of delivering palliative care education using an established virtual learning model (Project ECHO) for healthcare clinicians working in the Rohingya refugee response in Bangladesh. Program acceptability and the impacts on learners’ self-reported knowledge, comfort, and practice changes were evaluated. Methods Using the Project ECHO model, an education program consisting of 7 core sessions and monthly mentoring sessions was developed. Each session included a didactic lecture, case presentation and interactive discussion. Surveys of participants were conducted before and after the program to assess knowledge, confidence, and attitudes about palliative care as well as learning experiences from the program. Results This virtual palliative care training program engaged 250 clinicians, including nurses (35%), medical assistants (28%) and physicians (20%). Most participants rated the program as a valuable learning experience (96%) that they would recommend to their colleagues (98%). Participants reported improvements in their knowledge and comfort related to palliative care after participation in the program, and had improved attitudes towards palliative care with demonstrated statistical significance (p < 0.05). Conclusions Virtual training is a feasible model to support healthcare providers in a humanitarian health response. Project ECHO can help to address the urgent need for palliative care in humanitarian responses by supporting healthcare workers to provide essential palliative care to the growing number of individuals with serious health-related suffering in humanitarian settings.

Experts estimate that over 25 million Americans are in recovery from addiction to alcohol and other drugs. Many will be confronted with a serious progressive illness necessitating palliative care or hospice services. In current literature, substance use disorder has mostly been examined in relation to appropriate symptom assessment and management, opioid risk screening, and controlled substance prescribing practices. However, as hospice and palliative care (HPC) clinicians strive to provide whole person care for the seriously ill, awareness and facilitation of healthy psychosocial–spiritual coping strategies for recovering addicts should enhance such care. One of the more common support mechanisms to support recovery is the 12-step program, based on Alcoholics Anonymous. Twelve-step programs have been shown to provide effective coping strategies, not only to help facilitate ongoing abstinence but also to support other psychosocial–spiritual crises. The HPC providers may help to serve those living with addiction disorders better by assessing not only patient histories of substance use/abuse and other addictive behaviors but by facilitating their ongoing support recovery efforts. Here, we use 2 HPC cases to illustrate the value of 12-step recovery programs in patient support and provide recommendations for enhancing such healthy coping in HPC clinical settings.

Continuous cardiac inotropes are increasingly utilized for symptom management in advanced heart failure (AHF). Among patients who are not eligible for cardiac transplant or mechanical circulatory support, many are hospice eligible at the time of inotrope initiation. Nevertheless, given relative infrequent use as well as cost issues, acceptability and management of inotropes in the hospice setting are likely widely variable between hospice agencies.To describe hospice care experiences for patients with AHF receiving continuous inotrope therapies and weaning inotropes at the end of life.Single-institution retrospective chart review of patients with AHF receiving continuous inotropes who were discharged from the hospital to hospice care between February 2015 and October 2016 and survey of hospice medical directors providing direct care of these patients.Eighteen patients with AHF receiving continuous inotropes were discharged to 6 hospice agencies. Twelve patients were weaned from inotropes prior to death. Among cases where the inotrope was weaned, patients lived several days to more than 2 weeks. All hospice medical directors surveyed would accept patients on inotropes again. Most believed that providing continuous inotrope therapy for patients with AHF is compatible with the philosophy of hospice care.Cardiac inotropes can align with both the goals of care for the patient with AHF and the philosophy of hospice care. Patients with AHF admitted to hospice care on continuous inotropes may live days to weeks, whether or not inotropes are discontinued.

Although guidelines recommend more and earlier advance care planning (ACP) for patients with chronic kidney disease (CKD), scant evidence exists to guide incorporation of ACP into clinical practice for patients with stages of CKD prior to kidney failure. Involving nephrology team members in addition to primary care providers in this important patient-centered process may increase its accessibility. Our study examined the effect of coaching implemented in CKD clinics on patient engagement with ACP.Multicenter, pragmatic randomized controlled trial.Three CKD clinics in different states participated: 273 patients consented to participate, 254 were included in analysis. Eligible patients were 55 years or older, had stage 3-5 CKD, and were English speaking.Nurses or social workers with experience in nephrology or palliative care delivered individualized in-person ACP sessions. The enhanced control group was given Make Your Wishes About You (MY WAY) education materials and was verbally encouraged to bring their completed advance directives to the clinic.Primary outcome measures were scores on a 45-point ACP engagement scale at 14 weeks and a documented advance directive or portable medical order at 16 weeks after enrollment.Among 254 participants analyzed, 46.5% were 65-74 years of age, and 54% had CKD stage 3. The coached patients scored 1.9 points higher at 14 weeks on the ACP engagement scale (β = 1.87 [95% CI, 0.13-3.64]) adjusted for baseline score and site. Overall, 32.8% of intervention patients (41 of 125) had an advance directive compared with 17.8% (23 of 129) of patients in the control group. In a site-adjusted multivariable model, coached patients were 79% more likely to have a documented advance directive or portable medical order (adjusted risk ratio, 1.79 [95% CI, 1.18-2.72]), with the impact principally evident at only 1 study site.Small number of study sites and possible unrepresentativeness of the broader CKD population by study participants.Individualized coaching may be effective in enhancing ACP, but its impact may be influenced by the health care environment where it is delivered.The Patrick and Catherine Weldon Donaghue Medical Research Foundation, via the Greater Value Portfolio.Registered at ClinicalTrials.gov with study number NCT03506087.

Background: Critically ill patients with COVID-19 infection on extracorporeal membrane oxygenation (ECMO) face high morbidity and mortality. Palliative care consultation may benefit these patients and their families. Prior to the pandemic, our institution implemented a policy of automatic palliative care consultation for all patients on ECMO due to the high mortality, medical complexity, and psychosocial distress associated with these cases. Objectives: The main objective was to describe the role of the palliative care team for patients on ECMO for COVID-19 infection. The secondary objective was to describe the clinical outcomes for this cohort. Design: Case series. Settings/Subjects: All patients age 18 or older infected by the novel coronavirus who required cannulation on ECMO from March through July of 2020, at an urban, academic medical center in the United States. Inter-disciplinary palliative care consultation occurred for all patients. Results: Twenty-three patients (median age 43 years [range 28-64], mean body mass index 34.9 kg/m2 [SD 9.2], 65% Hispanic ethnicity) were cannulated on ECMO. Eleven patients died during the hospitalization (48%). Patients older than 50 years of age demonstrated a trend toward increased odds of death compared to those younger than 50 years of age (OR 9.1, P = 0.07). Patients received an average of 6.8 (SD 3.7) palliative clinical encounters across all disciplines. The actions provided by the palliative care team included psychosocial support and counseling, determination of surrogate decision maker (for 100% of patients), pain management (83%), and non-pain symptom management (83%). Conclusions: Here, we present one of the first studies describing the patient characteristics, outcomes, and palliative care actions for critically ill patients with COVID-19 on ECMO. Almost half of the patients in this cohort died during their hospitalization. Given the high morbidity and mortality of this condition, we recommend involvement of palliative care for patients/families with COVID-19 infection who are on ECMO. The impact of palliative care on patient and family outcomes, such as symptom control, satisfaction with communication, rates of anxiety, and grief experience merits further investigation.

Background: Patients admitted to an acute care setting with a devastating brain injury are at high risk for morbidity and mortality. These patients and their families can benefit from the psychosocial and decision-making support of a palliative care consultation. Objective: We aim to investigate the characteristics and impact of palliative care consultation for patients under the management of neurosurgical and critical care services with a devastating brain injury in a neurological intensive care unit (ICU) at a large tertiary-care hospital. Design: Data were collected by retrospective review of the electronic medical record and metrics collected by the palliative care service. Data were analyzed using descriptive statistics. Linear regression analysis was performed to assess effect of timing of palliative care consultation. Results: Fifty-five patients admitted to the neurological ICU under the management of the neurosurgical service received a palliative care consultation for the following: hemorrhagic stroke (49%), metastatic cancer (22%), and traumatic brain injury (18%). Of these, 73% had at least one neurosurgical intervention. Palliative care was most frequently consulted for assistance in defining a patient's goals of care (88%). When compared with late consultation, early palliative care consultation was significantly associated with shorter mean length of stay (LOS) and positively correlated in linear regression analysis without an effect on mortality. Conclusions: When compared with a late consultation, early palliative care consultation corresponded to shorter LOS without increasing mortality. One reason for this effect may be that palliative care can help to clarify and document goals of care earlier and more concretely.

Background: No guidelines exist regarding care for patients with advanced heart failure (HF) receiving hospice care while continuing advanced HF therapies such as left ventricular assist devices (LVADs) or continuous inotropes. Objective: We surveyed hospice providers in our tristate region to determine hospice demographics, current practices for care of patients with advanced HF, and perceived challenges of providing advanced HF therapies. Design: Cross-sectional survey of hospice clinical and administrative leaders. Results: Forty-six respondents representing 23 hospices completed the survey. Over half (27/46) held leadership administrative roles, and most (37/46) had more than 5 years of hospice experience. Although lack of experience and cost were cited as primary barriers to providing inotrope therapy in home hospice, about half of respondents (24/46) said they would manage inotropes. All participants said their respective hospices accept patients with implantable cardioverter-defibrillators; over half (28/46) said they accept patients with LVADs into hospice care. Lack of experience with LVADs was the most frequently cited barrier. Most participants were interested in training and support by an advanced HF program to facilitate hospice care of patients receiving these advanced therapies. General access to hospice services for patients with HF at their organization was considered adequate by 30 of 46 participants. Most (32/46) reported that referrals are made too late. Conclusions: Hospice specialists reported widely varied practice experiences caring for patients with HF receiving advanced therapies, noted specific challenges for care of these patients, and expressed a desire for targeted HF education.

Guest editors Christopher Barnett, MD, and Hunter Groninger, MD, conducted a roundtable discussion on March 23, 2018, with Keith Swetz, MD, Associate Professor of Medicine at the University of Alabama School of Medicine, Section Chief of Palliative Care at the Birmingham VA Medical Center and Medical Director of its Safe Harbor Palliative Care Unit; pulmonary hypertension patient Donna Hershey, RN, Children's National Medical Center, Washington, DC; and Anne Kinderman, MD, Associate Clinical Professor of Medicine at the University of California, San Francisco, and Director of the Supportive & Palliative Care Service at Zuckerberg San Francisco General. Their wide-ranging conversation about the role and status of palliative care for pulmonary hypertension patients follows.

Heart failure (HF) experts recommend initiation of continuous inotrope therapy, such as milrinone or dobutamine, for clinically decompensating patients with stage D HF. Although originally intended to serve solely as a bridge to more definitive surgical therapies, more and more patients are receiving inotrope therapy for purely palliative purposes. In these cases, questions arise regarding care at the end of life. What criteria determine ongoing clinical benefit? Should the inotrope be continued until death? Should inotrope dosing be increased within recommended guidelines to improve symptoms? What is the role of inotropes in hospice care? Here, we describe such a case as a springboard to contemplate the evolving role of inotrope therapies and how hospice and palliative providers may interface with this rapidly developing face of advanced HF care.

Purpose As more patients live with advanced heart failure, use of continuous intravenous inotropic support (CIIS) as palliative therapy has increased over the last decade. However, in-depth analysis of symptom benefits provided by CIIS and its associated risks merit further investigation. We aimed to study health-related quality of life outcomes for patients receiving CIIS as palliative therapy. Methods Retrospective analysis of patients with advanced heart failure at an urban, academic center who were started on CIIS as palliative therapy between 2014-2016. Patients prescribed CIIS as bridge to surgical therapies were excluded. Data collected from the EHR included demographics, length of time on CIIS, change in functional status at first clinic appointment, and complications of therapy (e.g. ICD shocks, infections, hospitalizations, ER visits, ICU admissions). Data were analyzed using descriptive statistics. Results Seventy-six patients meeting study criteria received CIIS for palliation for an average of 6.2 months. The majority experienced improvement in functional status (69.7%) and changed code status to DNR/DNI after inotrope initiation (57.8%). Rates of ICD shocks and central line infection were 4.4 and 1.3 per 100 person-months of CIIS therapy, respectively. The rate of all cause- hospitalization was 43.6 per 100 person-months of follow up. More specifically, rate of hospitalization due to acute decompensated heart failure (ADHF), bacteremia, ICD shock, or other were 12.9, 1.1, 0, and 1.3 per 100 person-months of follow-up, respectively. Reasons for ED visits due to HF compared to non-HF related were 11.2 and 3.4 per 100 person-months, respectively. The rate of ICU admission during palliative CIIS was 5.5 per 100 person-months. Overall, patients spent 20.1% (SD 21.7%) of their time on inotropes admitted to our hospital. Conclusion Patients in this cohort reported an improvement in functional status after the initiation of CIIS. All-cause hospitalization rate was quite high in this patient cohort, with ADHF being the primary reason for hospitalization, followed by bacteremia. ICD shocks do not appear to be a major burden for these patients with respect to both rate of shocks observed and reason for hospitalization. Patients on CIIS as palliative therapy spent, on average, one out of five days in the hospital while on inotropic therapy.

TOPIC: Chest Infections TYPE: Original Investigations PURPOSE: Studies have demonstrated the disproportionate impact of COVID-19 on patients from racial and ethnic minorities. Black and Hispanic people suffer disproportionately high rates of infection with SARS-CoV-2, hospitalization, and mortality, compared to non-Hispanic White people. However, case fatality rates have been shown to be similar across racial and ethnic groups. Less is known about the factors underpinning the similar case fatality rates between different racial and ethnic populations. METHODS: This retrospective cohort study analyzed outcomes for patients with COVID-19 hospitalized at MedStar Health institutions between March 1st, 2020 and July 1st, 2020. MedStar Health is a large health system with 9 hospitals in the Baltimore-Washington DC region. Data was abstracted from electronic health records, with patients stratified based on their race and ethnicity. The primary outcome was survival to hospital discharge, and secondary outcomes included need for mechanical ventilation. Statistical analyses included descriptive statistics and multi-variate logistic regressions. RESULTS: 3,165 patients were included in this analysis. The mean age of the cohort was 60.2 years (SD 17.3) and 49% were female. 14.7% were non-Hispanic White patients, 57.2% were non-Hispanic Black patients, and 20.7% were Hispanic. Hispanic patients were significantly younger than the cohort, with a mean age of 50.0 years. The overall survival of this cohort was 84.3%, with 79.8% survival for non-Hispanic White patients, 83.3% for non-Hispanic Black patients, and 89.8% for Hispanic patients. Hispanic patients had lower odds of death than non-Hispanic White patients (OR=0.45, CI 0.32-0.63), but this difference was no longer present when controlling for patient age. Non-Hispanic Black patients (OR=1.35, CI 1.04-1.75) and Hispanic patients (OR=1.43, CI 1.06-1.93) had significantly increased odds of needing mechanical ventilation, with persistence of this difference when controlling for age, gender, insurance, and comorbidities. CONCLUSIONS: In this large cohort of patients from the Baltimore-Washington DC region hospitalized for SARS-CoV-2 infection, we demonstrate that patients of Hispanic ethnicity have higher odds of severe illness, as defined by need for mechanical ventilation, but lower hospital mortality than non-Hispanic White patients. The lower hospital mortality rate is likely mediated by the younger age of this group. CLINICAL IMPLICATIONS: Policy makers should consider interventions to target the social determinants such as differences in access to health care and risk of exposure to COVID-19 that may account for the higher odds of severe infection and delayed presentation among Hispanic patients. Additionally, our findings suggest that Hispanic community may be shouldering a disproportionate burden of chronic illness related to surviving severe COVID-19. DISCLOSURES: No relevant relationships by Muhtadi Alnababteh, source=Web Response No relevant relationships by Victor Avila-Quintero, source=Web Response No relevant relationships by Jose Flores, source=Web Response No relevant relationships by Hunter Groninger, source=Web Response No relevant relationships by Nina Laing, source=Web Response No relevant relationships by Anirudh RAO, source=Web Response No relevant relationships by Akram Zaaqoq, source=Web Response

While end-of-life care (EoLC) priorities for patients dying in the hospital are well-documented, few data characterize needs and experiences of their family members. We conducted thematic analysis of audio recorded interviews of 18 bereaved family members to elucidate these experiences. Participants' memories were organized into two parent themes: those related to satisfaction with the care received and effective communication; those identifying shortcomings in patient care, hospital-family communication, hospital environment, and care burden on the part of family members. These findings provide insight to enhance services to patients and their families at end-of-life and improve postmortem and bereavement services.

Context Palliative care (PC) clinical practice guidelines recommend providers assess the impact of illness on intimacy and sexuality. Previous studies around sexuality and intimacy in patients with advanced illness have largely focused on patients with a cancer diagnosis in the outpatient setting. Little is known about such impact of illness on inpatients receiving PC consultation. Objectives To assess the impact of patient illness on intimacy and sexuality through use of a screening tool and brief clinical questionnaire in hospitalized patients receiving PC consultation. Methods Between January 2016 and May 2017, palliative social workers at three hospitals asked patients to report the level of impact that their illness(es) had on intimacy and to describe the impact. Data were analyzed using descriptive statistics and chi-square analysis. Qualitative data were analyzed using constant comparison methodology. Results Among the 97 PC patients screened for intimacy concerns, the majority were female (57.7%), African American (71.1%) and on average 57.9 years of age. Most (91.7%) reported that they had not been previously asked about how their illness had impacted their intimacy. Nearly half (48.4%) reported that illness had moderately or significantly impacted their intimacy; these patients tended to be younger and in a current relationship (P Conclusion Patients with advanced illness commonly report negative issues regarding intimacy and sexual health. Incorporating routine screening into PC consultation may be warranted.

Palliative care is an interdisciplinary care focusing on alleviating biopsychosocial-spiritual distress in patients and caregivers with a serious, progressive illness and their families – including mesothelioma. Distress can be of any modality and reflects the ways mesothelioma affects the whole person and the community. This chapter decouples palliative care and hospice care and encourages the early integration of palliative interventions in the treatment continuum for people with mesothelioma, unlike hospice. Moreover, it provides an evidence-based perspective on treating common physiological and psychosocial symptoms, improved mortality rates for patients who utilize palliative care, and how to access palliative care.