Hospice Day Research Articles

Systemic anti-cancer treatment and healthcare utilization at end of life: A SEER Medicare analysis.

276 Background: Use of chemotherapy at end-of-life (EOL) is associated with adverse quality of life, higher costs, increased hospitalizations (HL), emergency department (ED), and intensive care unit (ICU) utilization and lower hospice (HP) use. While EOL chemotherapy use has declined in recent years, EOL immunotherapy use has increased. It is unknown how the trend of increased immunotherapy use at the EOL is associated with healthcare utilization. We evaluated the association between types of systemic anticancer therapy (SACT) within 30 days of death and hospitalizations, emergency department, intensive care unit, and hospice use. Methods: We identified patients in the SEER-Medicare database with a diagnosis date of 2005-2019 and death date of 2015-2020 with the following cancers: breast, colorectal, lung, prostate, bladder, cervix, kidney, leukemia, liver, lymphoma, myeloma, ovarian, pancreas, skin, and uterine. EOL SACT was defined as SACT received within 30 days of death, categorized as combination chemo-immunotherapy, immunotherapy, and chemotherapy. We analyzed associations between EOL SACT use (overall and by type), and healthcare utilization in the last 30-days of life (ED, HL, ICU, and HP) with chi-square tests and multivariable regression, controlling for sociodemographic and cancer covariates. Results: Of 499,607 beneficiaries, 37,595 (7.5%) received SACT within 30 days of death. Compared to no EOL SACT, any SACT use was associated with higher ED [75.5% vs 50.8%], HL [71.0% vs 48.7%] and ICU (35.7% vs 23.3%) and lower HP enrollment (46.1% vs 59.3%) and number of days in HP (2.4 vs 6.5 days) (all p <0.001, table). After adjusting for covariates, patients with EOL SACT were more likely to have HL (odds ratio [OR], 2.43; 95% confidence interval [CI], 2.38-2.49), ED visits (OR, 2.87; 95% CI, 2.80-2.94), and ICU stay (OR, 1.66; 95% CI, 1.62-1.70), and less likely to receive HP care (OR, 0.62; 95% CI: 0.61-0.64)-compared to no SACT use; All subtypes of EOL SACT were significantly more likely to have ED, HL, and ICU use and less likely to use HP than those with No EOL SACT (p-values <0.001). Conclusions: All types SACT within 30 days of death were associated increased healthcare use compared with no EOL SACT, with combination chemo-immunotherapy having the highest ED, hospitalizations and ICU use and lowest hospice enrollment and duration. Healthcare utilization. Combination Chemo-Immunotherapy(n=5,171) Immunotherapy(n = 11,397) Chemotherapy(n = 21,027) Any SACT(n = 37,595) No SACT(n = 462,012) P -value* ED Visit (%) 76.9 73.7 76.1 75.5 50.8 <.001 Hospitalizations (%) 72.5 67.7 72.5 71.0 48.7 <.001 ICU use (%) 40.4 32.1 36.5 35.7 23.3 <.001 Hospice use (%) 38.8 50.2 45.8 46.1 59.3 <.001 Number of days Hospice (Days, Mean ± standard deviation) 1.7 ± 3.0 2.7 ± 3.9 2.4 ± 3.9 2.4 ± 3.8 6.5 ± 7.8 <.001 *P-values for statistical difference between each individual SACT subgroup and No SACT and Any SACT and No SACT group.

Stepped Palliative Care for Patients With Advanced Lung Cancer

Despite the evidence for early palliative care improving outcomes, it has not been widely implemented in part due to palliative care workforce limitations. To evaluate a stepped-care model to deliver less resource-intensive and more patient-centered palliative care for patients with advanced cancer. Randomized, nonblinded, noninferiority trial of stepped vs early palliative care conducted between February 12, 2018, and December 15, 2022, at 3 academic medical centers in Boston, Massachusetts, Philadelphia, Pennsylvania, and Durham, North Carolina, among 507 patients who had been diagnosed with advanced lung cancer within the past 12 weeks. Step 1 of the intervention was an initial palliative care visit within 4 weeks of enrollment and subsequent visits only at the time of a change in cancer treatment or after a hospitalization. During step 1, patients completed a measure of quality of life (QOL; Functional Assessment of Cancer Therapy-Lung [FACT-L]; range, 0-136, with higher scores indicating better QOL) every 6 weeks, and those with a 10-point or greater decrease from baseline were stepped up to meet with the palliative care clinician every 4 weeks (intervention step 2). Patients assigned to early palliative care had palliative care visits every 4 weeks after enrollment. Noninferiority (margin = -4.5) of the effect of stepped vs early palliative care on patient-reported QOL on the FACT-L at week 24. The sample (n = 507) mostly included patients with advanced non-small cell lung cancer (78.3%; mean age, 66.5 years; 51.4% female; 84.6% White). The mean number of palliative care visits by week 24 was 2.4 for stepped palliative care and 4.7 for early palliative care (adjusted mean difference, -2.3; P < .001). FACT-L scores at week 24 for the stepped palliative care group were noninferior to scores among those receiving early palliative care (adjusted FACT-L mean score, 100.6 vs 97.8, respectively; difference, 2.9; lower 1-sided 95% confidence limit, -0.1; P < .001 for noninferiority). Although the rate of end-of-life care communication was also noninferior between groups, noninferiority was not demonstrated for days in hospice (adjusted mean, 19.5 with stepped palliative care vs 34.6 with early palliative care; P = .91). A stepped-care model, with palliative care visits occurring only at key points in patients' cancer trajectories and using a decrement in QOL to trigger more intensive palliative care exposure, resulted in fewer palliative care visits without diminishing the benefits for patients' QOL. While stepped palliative care was associated with fewer days in hospice, it is a more scalable way to deliver early palliative care to enhance patient-reported outcomes. ClinicalTrials.gov Identifier: NCT03337399.

VARIATION IN USE OF HOSPICE AIDES BY RESIDENTIAL SETTING

Abstract Hospice care frequently includes visits from hospice aides, but need for hospice aide care may be different for those in the community compared to settings like assisted living or nursing homes where personal care is routinely provided. The objective of this longitudinal cohort study is to identify factors associated with hospice aide visits (any versus none) and frequency of hospice aide visits (proportion of routine hospice cays with an aide visit) in different residential settings (community, assisted living, and nursing home). We identified Medicare beneficiaries enrolled in the Medicare Current Beneficiary Survey (MCBS) who died between 2010-2019 (n=1,915). We used self-reported survey responses, Medicare claims data, and Medicare Provider of Service data to compare decedent hospice care experience across residential settings and estimated multivariable models to compare factors associated with hospice aide visits among residential settings. Hospice aide visits were least common in the community setting (64.4% vs 76.6% vs 72.6% with any hospice aide visits in community, assisted living, and nursing home respectively, p=0.002). In models adjusted for sociodemographic, clinical/functional, and hospice factors, neither hospice aide visits nor the proportion of routine hospice days with hospice aide visits varied significantly by residential settings. Future work to understand when and why hospice aides are utilized and how hospice aides collaborate with families and existing care teams in will help ensure that hospice care is appropriately tailored to individual care needs in all residential settings.

The PaCES Study: Cost effectiveness of an early palliative care intervention in patients with advanced colorectal cancer.

20 Background: An early palliative care (PC) pragmatic trial conducted in outpatient cancer clinics for patients living with advanced colorectal cancer (CRC), led to a 17% increase in early referrals (more than 3 months before death). This study evaluates the cost effectiveness of this trial. A lack of timely palliative care is associated with poorer quality of life, poorer symptom control and fewer days spent at home. Improving on this time toxicity is an important part of early palliative care. Methods: This pragmatic controlled before-and-after study was performed in 18 outpatient cancer clinics in two tertiary cancer centers in neighboring metropolitan cities. Baseline phase was from April 2017 to December 2018 with intervention phase only occurring in 1 of the cities, from April 2019 to December 2020. Intervention consisted of systematically screening patients for unmet PC needs, adding a community-based PC nurse specialist and templated ‘shared care’ letters sent from oncologists to primary care providers. Effectiveness was defined as the number of days spent at home in the last 90 days of life, by subtracting days in hospital, residential hospice, emergency department and clinic. A healthcare system perspective was used to calculate total costs in all sectors including hospital, cancer care, home care, palliative care and physician visits. Healthcare outcomes and costs were analysed using a difference-in-differences (DID) method, while accounting for geographic variations and other covariates. Results: A total of 695 decedents were included. There was a 15% decrease in hospital stay and 18% decrease in chemotherapy days in last 90 days of life. The intervention was cost dominant with an overall DID increase of 2.3 community days with an average cost reduction of C$1,942.17 per patient day in the community. Adjusted analysis showed that this difference was not statistically significant. A non-parametric random resampling of the population with 1,000 reiterations (bootstrapping) showed that the likelihood of the program remaining dominant was 69%. The biggest cost contributors were inpatient acute care (53.6%) and residential hospice (33.6%). Conclusions: Integrating early palliative care services into the care of CRC patients’ shows potential for cost savings and more days spent in the community in the last 90 days of life. Measuring time toxicity is a potentially important outcome in early palliative care trials while examining impact on cost.

Health Care Costs Associated With Hospice Use For People With Dementia In The US.

Policy makers in the US are increasingly concerned that greater use of the Medicare hospice benefit by people with dementia is driving up costs. Yet this perspective fails to incorporate potential cost savings associated with hospice. We estimated the association between hospice use by people with dementia and health care costs, using Medicare Current Beneficiary Survey data from the period 2002-19. For community-dwelling people with dementia, Medicare costs were lower for those who used hospice than for those who did not, whether hospice enrollment was in the last three days ($2,200) or last three months ($7,200) of life, primarily through lower inpatient care costs in the last days of life. In nursing homes, total and Medicare costs were lower for hospice users with dementia who enrolled within a month of death than for those who did not use hospice. Total costs for the entire last year of life for those who used any days of hospice in the last year compared with no hospice did not differ, although Medicare costs were higher and Medicaid costs lower for those in nursing homes. Medicare policies that reduce hospice access and incentivize hospice disenrollment may actually increase Medicare costs, given that hospice cost savings generally derive from a person's last days or weeks of life.

The Third Annual US Celebration of World Hospice and Palliative Care Day: A virtual coming together to unify the global palliative care community.

On 3-4 October 2022, the Memorial Sloan Kettering Cancer Center Supportive Care Service and Department of Psychiatry and Behavioral Sciences hosted the Third Annual United States (US) Celebration of World Hospice and Palliative Care Day (WHPCD). The purpose of this article is to reflect on the event within the broader context of the international WHPCD theme: "healing hearts and communities." We describe lessons learned in anticipation of the fourth annual conference to be held on 3-4 October 2023. Description of the third annual event, conference planning team reflection, and attendee evaluation responses. The Worldwide Hospice Palliative Care Alliance launched WHPCD in 2005 as an annual unified day of action to celebrate and support hospice and palliative care globally. Since 2020, the conference has attracted an increasing number of attendees from around the world. Two primary aims continue to guide the event: community building and wisdom sharing. Fifty-two interprofessional palliative care experts, advocates, patients, and caregivers provided 13 unique interactive sessions. Four hundred and fifty-eight multidisciplinary registrants from at least 17 countries joined the program. Free registration for colleagues in low- and middle-income countries, students and trainees, and individuals experiencing financial hardship remains a cornerstone of inclusion and equitable access to the event. The US WHPCD celebration provides a virtual platform that offers opportunities for scientific dissemination and collective reflection on hospice and palliative care delivery amid significant local and global changes in clinical practice, research, policy and advocacy, and population health. We remain committed to ensuring an internationally relevant, culturally diverse, and multidisciplinary agenda that will continue to draw increased participation worldwide during future annual events.

Explaining how and why social support groups in hospice day services benefit palliative care patients, for whom, and in what circumstances.

Palliative care aims to provide holistic support for people with life-limiting illness, responding to psychological, social and spiritual needs, as well as to clinical and physical. In the United Kingdom, hospice day services (including day care, group interventions, group activities, and social events for palliative care outpatients) aim to provide opportunities for patients to gain social support, which is thought to improve their quality of life. This research explored social support within hospice day services, to explain in detail how and why social support obtained within a hospice day service could be beneficial to palliative care patients. Qualitative research using observations of hospice day services and interviews with service providers. Data collection involved nineteen interviews with hospice service providers (n = 19) and researcher observations of hospice day services. The findings detail how patient and hospice context interact to produce mechanisms that lead to outcomes beyond the hospice day service. Practical, clinical and social aspects of the hospice day service are important for patients feeling welcome and safe in the setting. The opportunity to connect with other people and work towards personal goals can boost self-confidence for patients who have lost access to meaningful activity. New friendships between patients encourages reciprocal support and feelings of belonging. It is beneficial to have permission to speak freely about topics deemed inappropriate elsewhere, because honest communication is helpful in accepting and adapting to their circumstances. Hospice day services facilitate group settings for reciprocal social support. This research proposes an initial programme theory that can be further developed and tested. It explains how and why, in some contexts, social support increases personal and practical resources to cope with illness and death, leading to changes outside of the hospice (to mood, interpersonal interactions and behaviour) that could improve quality of life.

HOSPICE UTILIZATION AMONG MEDICAID-ONLY AND DUALLY ELIGIBLE DECEDENTS IN CONNECTICUT

Abstract Individuals with Medicaid as their health care payer source may be either “Medicaid-only,” or “dually eligible,” i.e., qualifying for both Medicaid and Medicare. Medicare included hospice as a full Medicare benefit in 1982; Hospice is an optional Medicaid benefit for states; Connecticut added the Medicaid hospice benefit in 2010. This study explores hospice use in Connecticut’s Medicaid program by comparing hospice use and length of hospice enrollment by Medicaid-only vs. dually eligible and by diagnosis for decedents who died between 2017 and 2020 and had a hospice-appropriate diagnosis. This analysis of 2,990 Medicaid-only and 24,881 dually eligible decedents finds that dually eligible decedents had a significantly (p&amp;lt;.001) higher rate of hospice use (48.1%) compared to Medicaid-only decedents (29.9%). Medicaid-only decedents received hospice for a median of 12 days vs. 13 days for the dually eligible (p=.12). Dually eligible decedents consistently received hospice more often than Medicaid-only decedents across all diagnoses (cancer (p&amp;lt;.05) circulatory (p&amp;lt;.001), dementia (p&amp;lt;.001), respiratory (p&amp;lt;.001) and stroke (p&amp;lt;.001)). Dually eligible decedents had significantly more days of hospice than Medicaid-only decedents for subgroups with a circulatory (p&amp;lt;.05) or stroke (p&amp;lt;.05) diagnosis, but Medicaid-only decedents with a dementia diagnosis had more days of hospice than their dually-eligible counterparts. Additional multi-variate analysis will demonstrate how other factors, like age, may account for differences. Recommendations include encouraging physician use of hospice screening tools and developing education interventions with physicians and patients to increase understanding of the availability and benefits of hospice with particular focus on Medicaid-only patients.

HEALTH AND WELL-BEING OF FAMILY CAREGIVERS FOLLOWING HOSPICE USE

Abstract Some patterns of hospice use are potentially disruptive and stressful for both patient and family. Using a decedent sample of 17,320 hospice users from the Utah Population Database, linked to the health records of spouse and first-degree relatives (child, parent, sibling, Mean=3.36 per decedent). Stroke decedents had higher odds of delayed admission (i.e., &amp;lt;7 days of hospice), while those with dementia and COPD had higher odds of extended use (i.e., &amp;gt;6 months of hospice), compared to cancer decedents. Family members, especially spouses, who experienced delayed admission or extended use had higher odds of hospitalization and increased use of antidepressants, both prior to and following the death, compared to those with more normative hospice use (6 months or less, typical of cancer patients). The hospice experience has both immediate and lasting consequences on the family; eligibility criteria for the hospice benefit may need to be modified by admitting diagnosis.

A survey of hospice day services in the United Kingdom & Republic of Ireland : how did hospices offer social support to palliative care patients, pre-pandemic?

IntroductionSocial support is described by patients and other stakeholders to be a valuable component of palliative day care. Less is known about the range of hospice services that have been used in practice that facilitate social support. An online survey aimed to gain an overview of all hospice day services that facilitated social support for adults outside of their own homes.MethodsAn online survey was distributed via email to people involved in managing hospice day services. Questions were asked on hospice characteristics, including staff and volunteer roles. Respondents were asked to identify services they felt offered social support to patients. Data collection took place between August 2017 and May 2018.ResultsResponses were received from 103 hospices in the UK and ROI (response rate 49.5%). Results provide an overview of hospice day and outpatient services that offer social support to patients. These are: multi-component interventions, activity groups, formal support groups, befriending, and informal social activities. Multi-component interventions, such as palliative day care, were the most commonly reported. Their stated aims tend to focus on clinical aspects, but many survey respondents considered these multicomponent interventions to be the ‘most social’ service at their hospice. The survey also identified a huge variety of activity groups, as well as formal therapeutic support groups. Informal ‘social-only’ activities were present, but less common. Over a third of all the services were described as ‘drop in’. Most responding hospices did not routinely use patient reported outcome measures in their ‘most social’ services.ConclusionsThe survey documents hospice activity in facilitating social support to be diverse and evolving. At the time of data collection, many hospices offered multiple different services by which a patient might obtain social support outside of their own home and in the presence of other patients.

COVID Reflections

COVID Reflections

The 2nd Annual US Celebration of World Hospice and Palliative Care Day: A virtual coming together to support equity in palliative care access.

On October 5-6, 2021, the Memorial Sloan Kettering Cancer Center Supportive Care Service and Department of Psychiatry and Behavioral Sciences hosted the 2nd Annual United States (US) Celebration of World Hospice and Palliative Care Day (WHPCD). The purpose of this article is to describe the event within the broader context of the international WHPCD theme: "Leave No One Behind - Equity in Access to Palliative Care." We reflect on lessons learned in anticipation of the 3rd annual conference to be held October 3-4, 2022. Description of the 2nd annual event, conference planning team reflection, and attendee evaluation responses. The Worldwide Hospice Palliative Care Alliance launched WHPCD in 2005 as an annual unified day of action to celebrate and support hospice and palliative care around the world. The 2021 US-based innovative virtual conference featured 37 interprofessional hospice and palliative care specialists and patient and family caregiver speakers across 11 diverse sessions with a focus on health equity and COVID-19 considerations. Two primary aims continue to guide the event: community building and wisdom sharing at the intersection of art and science. 278 registrants from at least 14 countries and 21 different states across the US joined the program, which served as a global debriefing for hospice and palliative care workers from diverse settings, contexts, and disciplines. The US WHPCD Celebration creates a virtual coming together for collective reflection on hospice and palliative care delivery amid vast changes in clinical practice, research, and policy, both locally and globally. In addition, our goal to ensure an internationally relevant, culturally inclusive, and multidisciplinary agenda will continue to draw increased participation worldwide during future annual events.

The Long and Winding Road: A Caregiver’s Journey

In a discussion about innovative caregiving programs, it is important to hear the voice of the caregiver. In this section, using her personal experience, this healthcare professional will explore her interactions with the medical system as a caregiver for her partner. She will discuss her caregiver journey from the cancer diagnosis in 2014 through her partner’s final days in hospice, which occurred during the pandemic. She will discuss pertinent issues regarding in what ways the healthcare system response was helpful, which responses were problematic, and where it outright failed to address caregiver needs. Issues, such as caregiver perceived invisibility during the hospital stay, how ageism affected policy decisions and what effect those policies had on her as the caregiver, and other important issues will be explored, including the how the pandemic affected her as a caregiver.

Inequities in Palliative and Dementia Care and Health in Long-Term Supportive Services Settings

Abstract Most older adults with serious illness, including Alzheimer’s Disease and Related Dementias (ADRD) reside in community-based settings. These individuals and their care partners rely on Long Term Supportive Services (LTSS) including nursing home, home health, hospice, and adult day centers to provide support. LTSS are often under-resourced and reimbursed however, with significant regulatory restrictions on the care they can provide. These issues combined with other systemic factors in our healthcare system and society, including racism and poverty, lead to substantial inequities. Even preceding the use of LTSS, ADRD is diagnosed later in non-white individuals and access to high-quality services, including palliative care is severely limited. Moreover, few palliative care interventions address ADRD and even fewer have been specifically tailored to address the needs of our multi-cultural, racially and ethnically diverse society. This symposium will therefore utilize data from several nationwide data sets collected as part of routine care for clinical, billing, and/or regulatory purposes to assess inequities that exist across LTSS sites related to ADRD and palliative care. The individual abstracts show a clear pattern of inequities that stem from endemic systems failures towards people of color in the United States that must be addressed through a multipronged approach. This research shows that policies must be changed to require adequate collection of social determinants of health, to target policies that allow sub-standard or limited access to care, and research and clinical reform to produce a more culturally sensitive approach to care for those with ADRD and other serious illnesses.

End-of-Life Care for Older Adults with Aggressive Non-Hodgkin Lymphoma

Background: Aggressive non-Hodgkin lymphoma (NHL) commonly affects older adults and is often treated with intensive therapies. Receipt of intensive therapies and absence of a clear transition between the curative and palliative phases of treatment yield prognostic uncertainty and risk for poor end-of-life (EOL) outcomes. However, data regarding the EOL outcomes of this population are lacking.Methods: We conducted a retrospective analysis of adults >65 years with aggressive NHL treated with systemic therapy at Massachusetts General Hospital from 4/2000-7/2020 who subsequently died. We abstracted patient and clinical characteristics and EOL outcomes from the electronic health record (EHR), including patients' place of death, cause of death, palliative care and hospice utilization, and hospice length of stay using the EHR and the Social Security Death Index. We also determined whether patients were hospitalized (yes versus no), received systemic therapy (yes versus no), or were admitted to the ICU (yes versus no) within 30 days of death. Using multivariable logistic regression, we examined factors associated with hospitalization within 30 days of death and hospice utilization.Results: Among 91 patients (median age = 75 years; 37.4% female), the most common lymphoma diagnosis was de novo DLBCL/grade 3B follicular lymphoma (64/91, 70.3%), and the majority (64/91, 70.3%) had advanced stage disease. Overall, 70.3% (64/91) were hospitalized, 34.1% (31/91) received systemic therapy, and 23.3% (21/90) had an intensive care unit admission within 30 days of death. The rates of palliative care consultation and hospice utilization were 47.7% (42/88) and 39.8% (35/88), respectively. A minority (21/88, 23.9%,) received palliative care more than 30 days before death. Of those receiving palliative care consultations, the majority (33/42, 78.6%) occurred exclusively in the inpatient setting, and most (32/42, 76.2%) were seen either as a one-time consultation or followed during a single inpatient hospitalization. Symptom management (24/42, 57.1%) was the most common reason for palliative care consultation, followed by both symptom management and goals of care (11/42, 26.2%) and goals of care (4/42, 9.5%). Only 39.8% (35/88) received hospice services, with 80.7% (71/88) having a hospice length of stay ≤ 7 days. Among hospice enrollees, the median length of stay on hospice was 7 days (range: 0-117). Among all patients, 51.6% (47/91) died in hospital, rehab, or nursing home, 23.1% (21/91) died at home, 11.0% (10/91) died in inpatient hospice or a hospice house, and 14.3% (13/91) had an unknown or other place of death. The most common cause of death was cancer progression (44/91, 48.4%,) followed by infection or cancer treatment complication (20/91, 22.0%). In multivariable analysis, elevated LDH was associated with risk of hospitalization within 30 days of death (OR 3.61, p=0.014). Palliative care consultation (OR 4.45, p=0.005) and hypoalbuminemia (OR 0.29, p=0.026) were associated with likelihood of hospice utilization.Conclusions: Older adults with aggressive NHL often experience high health care utilization and infrequently utilize hospice care at the EOL. Our findings underscore the need for interventions to optimize the quality of EOL care for this population, and provide important data to guide informed decision-making and help inform future interventions aimed at improving the EOL care of this unique geriatric oncology population. DisclosuresNo relevant conflicts of interest to declare.

Access to palliative care: the primacy of public health partnerships and community participation

Oct 9, 2021, marks World Hospice and Palliative Care Day. The 2021 theme, Leave No One Behind—Equity in Access to Palliative Care, is especially pertinent given the unprecedented effects of COVID-19. In support of this theme, we propose a re-imagining of palliative-care access to promote more equitable outcomes through public-health partnerships that prioritise community development and participation in end-of-life care.

Hospice Use Among Patients with Myeloma

Introduction: Timely hospice enrollment is widely endorsed as an indicator of quality end-of-life (EOL) care. Although there have been significant increases in overall rates of hospice for patients with blood cancers, there have also been concomitant increases in “late” enrollment (generally defined as stays of ≤ 3 days before death). Such late enrollment may be less meaningful, as patients are being admitted to hospice primarily to manage their death, rather than to obtain additional palliative benefits. We aimed to characterize hospice use among patients with myeloma, focusing on prevalence and predictors of late enrollment.Methods: We conducted a retrospective analysis using the Surveillance Epidemiology and End Results (SEER)-Medicare database. Patients ≥ 65 years of age who had a primary diagnosis of myeloma between 2000 and 2013, lived for at least 30 days after their diagnosis, and died prior to December 31, 2013 were eligible for inclusion. We examined time trends in overall hospice use and late enrollment (defined as ≤ 3 days before death). Next, limiting our analysis to those who enrolled, we fit a multivariable logistic regression model to characterize factors independently associated with late enrollment, including sociodemographic and clinical characteristics (for those with p <0.05 in univariable analysis).Results: A total of 12,803 patients with myeloma were eligible. Overall, 47.9% enrolled in hospice, of which the majority used outpatient/home hospice services (80.5%). The median length of stay in hospice was 12 days. Among those who enrolled, 17.8% spent ≤ 3 days in hospice before death. There was a significant trend in increasing hospice use from 28.6% in 2000 to 56.4% by 2013, p <0.001, but no significant increase in late enrollment (12% in 2000 to 16.7% in 2013, p=0.38). Transfusion-dependent patients (37.9% vs. 16.6%, p <0.001) and patients on dialysis (32.9% vs. 16.6%, p <0.001) were more likely to experience late enrollment, an association that remained significant in multivariable analysis. Other factors associated with late enrollment are shown in the Table below.Conclusions: In this large cohort of myeloma decedents, there was a significant increase in hospice use over time, reaching a clear majority enrolling by 2013. Unlike many other hematologic cancers, gains in hospice use were not accompanied by increases in late enrollment. Distinct features of myeloma as compared to other blood cancers-such as incurability and high prevalence of pain at the EOL-may make the need for hospice services at the EOL more clear and encourage more timely enrollment. [Display omitted] DisclosuresRichardson:Takeda: Consultancy, Research Funding; Celgene: Consultancy, Research Funding; Jazz Pharmaceuticals: Consultancy, Membership on an entity's Board of Directors or advisory committees, Research Funding; Oncopeptides AB: Membership on an entity's Board of Directors or advisory committees. Anderson:Bristol-Myers Squibb: Membership on an entity's Board of Directors or advisory committees; C4 Therapeutics: Other: scientific founder; Millenium Pharmaceuticals: Membership on an entity's Board of Directors or advisory committees; Oncopep: Other: scientific founder; Gilead Sciences: Membership on an entity's Board of Directors or advisory committees; MedImmune: Membership on an entity's Board of Directors or advisory committees.

The utility of the Brief Edinburgh Depression Scale (BEDS) in assessing severity of depression in advanced cancer patients

AimsWhen using an assessment tool, brevity and validity are essential. Although brief depression inventories exist, they rely heavily on the inclusion of somatic symptoms. This can be problematic in advanced cancer populations; weight loss and sleep disturbance are for the most part ubiquitous in these patients and may not necessarily be indicative of depression.The Brief Edinburgh Depression Scale (BEDS) is a 6-item shortened version of the Edinburgh Depression Scale which has been validated for use in patients with advanced cancer and is used internationally. The BEDS cut off threshold of 6/18 indicates that depression may be present. However, the BEDS currently provides no information regarding severity. The aim of this study is to establish severity thresholds for the BEDS by comparing it to another depression scale: the commonly used, rigorously validated, Patient Health Questionnaire (PHQ-9).Method284 advanced cancer patients attending hospice day services in the North West of England completed both the PHQ-9 and the BEDS. Mean participant age was 66.7 (Standard Deviation = 13.2) and the sample contained both males (n = 102, 36%) and females (n = 182, 64%). BEDS severity thresholds with the highest Sensitivity (Sn) and Specificity (Sp) were selected based on their ability to predict PHQ-9 categories.ResultA BEDS score of 4 to 6 was selected to indicate ‘mild depression’ (Sn = 81.7, Sp = 65); 7 to 8 ‘moderate depression’ (Sn = 74.8, Sp = 78.7); 9 to 11 ‘moderately severe depression’ (Sn = 82, Sp = 82.9) and 12 or more ‘severe depression’ (Sn = 63.2, Sp = 92.8). A linearly weighted kappa (with s weighting) showed a moderate level of agreement (0.47, 95% Confidence Interval: 0.40-0.54).ConclusionThe BEDS is a simple and brief tool used to screen for depression in advanced cancer patients. It is administered throughout the UK and multiple translation studies have enabled its global a (including in resource poor countries). The severity thresholds calculated here are derived from a large sample of patients with advanced cancer attending hospice services and demonstrate acceptable sensitivity and specificity in relation to the PHQ-9, a thoroughly validated reference standard. We conclude that the generated BEDS thresholds support use of the BEDS in determining the presence and severity of depression in advanced cancer populations.

The inaugural United States World Hospice and Palliative Care Day Celebration: A virtual coming together.

On October 10, 2020, the Memorial Sloan Kettering Cancer Center Supportive Care Service hosted their first-ever United States (US) World Hospice and Palliative Care Day (WHPCD) Celebration. The purpose of this article is to describe the US inaugural event in alignment with the broader goals of WHPCD and provide lessons learned in anticipation of the second annual conference to be held on October 5-6, 2021. Description of the inaugural event in the context of COVID-19 and WHPCD, co-planning conference team reflection, and attendee survey responses. The Worldwide Hospice Palliative Care Alliance initially launched WHPCD in 2005 as an annual unified day of action to celebrate and support hospice and palliative care around the world. The US-based innovative virtual conference featured 23 interprofessional hospice and palliative care specialists and patient and family caregiver speakers across nine diverse sessions addressing priorities at the intersection of COVID-19, social injustice, and the global burden of serious health-related suffering. Two primary aims guided the event: community building and wisdom sharing. Nearly 270 registrants from at least 16 countries and one dozen states across the US joined the free program focused on both personal and professional development. Unlike many other academic conferences and professional gatherings that were relegated to online forums due to pandemic-related restrictions, the US WHPCD Celebration was intentionally established to create a virtual coming together for collective reflection on the barriers and facilitators of palliative care delivery amid vast societal change. The goal to ensure a globally relevant and culturally inclusive agenda will continue to draw increased participation at an international level during future annual events. Finally, the transparent and respectful sharing of palliative care team experiences in the year preceding the conference established a safe environment for both individual expression and scholarly discussion.

Group-based Tai Chi as therapy for alleviating experiences of social death in people with advanced, incurable disease: an ethnographic study

ABSTRACT Advanced, incurable disease is a highly stressful and traumatic life event that can lead to losses of social identity, social connectedness, and losses associated with bodily disintegration. The combination of these losses makes it difficult to remain socially active and sometimes results in experiences of social death. However, few studies have explored the role of group-based hospice activities for mitigating the impact of social death in people with advanced, incurable disease. The aim of this study was to explore the personal and social experiences of participating in hospice-based Tai Chi among people with advanced, incurable disease, including its impact in mitigating experiences of social death. A focused ethnography was used to guide this study. Six months were spent in a local hospice day therapy unit in England collecting data through multiple methods, including 17 semi-structured interviews, 200 hours of participant observation, and informal conversations with 19 participants (15 females; 4 males, aged between 50 and 91). Data were analysed using a thematic framework approach and represented using traditional tales and ethnographic creative non-fictions (CNF). Two main themes were developed: (1) fostering social connections and meaningful support; and (2) the protection of a collective identity. An ethnographic CNF ‘moving and being together’ presents these themes in evocative, engaging, and accessible ways. Study findings demonstrate the value of group-based Tai Chi for mitigating experiences of social death in people with advanced, incurable disease. Ethnographic CNFs are a valuable way to represent lived experiences of illness in palliative and hospice care populations.