End-of-life Care Research Articles

Retrospective review of the code status of individuals with Down syndrome during the COVID-19 era.

Code status is a label in the medical record indicating a patient's wishes for end-of-life (EOL) care in the event of a cardiopulmonary arrest. People with intellectual disabilities had a higher risk of both diagnosis and mortality from coronavirus infections (COVID-19)than the general population. Clinicians and disability advocates raised concerns that bias, diagnostic overshadowing, and ableism could impact the allocation of code status and treatment options, for patients with intellectual disabilities, including Down syndrome (DS). To study this, retrospective claims data from the Vizient® Clinical Data Base (used with permission of Vizient, all rights reserved.) of inpatient encounters with pneumonia (PNA) and/or COVID-19 at 825 hospitals from January 2019 to June 2022 were included. Claims data was analyzed for risk of mortality and risk of "Do Not Resuscitate" (DNR) status upon admission, considering patient age, admission source, Elixhauser comorbidities (excluding behavioral health), and DS. Logistic regression models with backward selection were created. In total, 1,739,549 inpatient encounters with diagnoses of COVID-19, PNA, or both were included. After controlling for other risk factors, a person with a diagnosis of DS and a diagnosis of COVID-19 PNA had 6.321 odds ratio of having a DNR status ordered at admission to the hospital compared with those with COVID-19 PNA without DS. The diagnosis of DS had the strongest association with DNR status after controlling for other risk factors. Open and honest discussions among healthcare professionals to foster equitable approaches to EOL care and code status are needed.

Cuidados al final de la vida en unidades de cuidado intensivo neonatal de Iberoamérica: una mirada desde la perspectiva de enfermería

IntroductionEnd-of-life care (ELC) represents a quality milestone in neonatal intensive care units (NICU). The objective of this study was to explore how ELC are carried out in NICUs in Iberoamerica. MethodsCross-sectional study, carried out in 2022 through the administration of an anonymous survey sent to neonatal nursing professionals. The survey included general data and work activity data; existence and contents of ELC protocols in the NICU and training received. The survey was distributed by email and published on official SIBEN social networks. REDCap and STATA 14.0 software were used for data collection and analysis. ResultsWe obtained 400 responses from nurses from 11 countries, 73% working in third level hospitals. A percentage of 86 of the respondents are directly responsible for providing ELC, although 48% of them said they had not received training on this subject. Only 67 (17%) state that the NICU in which they work has a protocol that establishes a strategy for performing the ELC. Finally, the actions that are implemented during the ELC are globally infrequent (≤50%) in all the items explored and very infrequent (<20%) in relation to allowing free access to family members, having privacy, providing psychological assistance, register the process in the medical record, assist with bureaucratic processes or grant a follow-up plan for grief. ConclusionMost of the nursing professionals surveyed are directly responsible for this care, do not have protocols, have not received training, and consider that the ELC could be significantly improved. Strategies for ELCs in the Ibero-American region need to be optimized.

The Scope of Practice of an Embedded Pediatric Palliative Oncology Clinic

ContextPediatric palliative care (PPC) improves end-of-life (EOL) outcomes for children with cancer. Though PPC visits are the ‘intervention’ in studies focused on EOL care, the content of PPC visits within pediatric oncology is poorly understood. ObjectivesThis study aimed to understand the scope of PPC practice during visits for children with cancer and their families. MethodsThis was a retrospective cohort study of patients 0–27 years with cancer seen in PPC clinic within an academic pediatric oncology center between 2017 and 2022. During each PPC visit, documenting providers chose the domains discussed or managed (goals of care, symptom management, and care coordination with respective subdomains). Data was abstracted from the electronic health record, PPC clinic database, and Cancer Registry. The differences in frequency and addressed domains were analyzed by demographics, visit type, diagnosis group, and proximity to EOL. ResultsAcross 351 patients, 1919 outpatient PPC visits occurred. Median domains were higher in visits <90 days vs. 91+ days from EOL (12.0 vs. 10.0; p < 0.0001); pain and hospice collaboration were particularly discussed closer to EOL. Psychological symptoms like anxiety (30.7% vs. 21.1%; p < 0.001) were addressed more in follow-ups than initial visits. Compared to brain tumor or leukemia/lymphoma visits, solid tumor visits addressed more symptom management subdomains, especially pain (79.9%; p < 0.0001). ConclusionThe scope of PPC practice is broad and varied. Each visit encompasses many subdomains, the most common being care coordination with oncology teams and helping patients/families cope with the disease. More domains were addressed in solid tumor visits and near EOL.

End of life care at home: The role of critical care transfer services.

Most people would rather die at home than in hospital but only 18% of patients do so. Palliative care focuses on the physical, spiritual and psychosocial wellbeing of patients and their families, which should include facilitating transfers home when possible. Patients can have more autonomy over their care and be surrounded by loved ones which can have a significant impact on their quality of life. In this article we describe two cases of home repatriation for palliation. Case 1 describes the transfer of a patient with difficulties and gaps in planning, but with a safe transfer ultimately. Case 2 recounts a more comprehensive planning process emphasising collaboration between teams. Facilitating home-based care aligns with patients' desires for familiar surroundings and emotional support. A secondary benefit is that releasing a bed space allows another patient to receive critical care treatment. Challenges of palliative critical care transfers include needing a highly trained team and thorough planning. Early discussion with the family and community palliative care teams makes this a more feasible option for patients. A multidisciplinary team of hospital and community healthcare professionals working with the patient and their family can facilitate the transfer from intensive care to allow them to die at a place of their choosing. We should aim to fulfil these wishes at the end of life as it can greatly improve the patient's and their family's physical and emotional wellbeing during this difficult time.

Developing a question prompt list for family caregivers concerning the progression and palliative care needs of nursing home residents living with dementia.

Communication around a palliative approach to dementia care often is problematic or occurs infrequently in nursing homes (NH). Question prompt lists (QPLs), are evidence-based lists designed to improve communication by facilitating discussions within a specific population. This study aimed to develop a QPL concerning the progression and palliative care needs of residents living with dementia. A mixed-methods design in 2 phases. In phase 1, potential questions for inclusion in the QPL were identified using interviews with NH care providers, palliative care clinicians and family caregivers. An international group of experts reviewed the QPL. In phase 2, NH care providers and family caregivers reviewed the QPL assessing the clarity, sensitivity, importance, and relevance of each item. From 127 initial questions, 30 questions were included in the first draft of the QPL. After review by experts, including family caregivers, the QPL was finalized with 38 questions covering eight content areas. Our study has developed a QPL for persons living with dementia in NHs and their caregivers to initiate conversations to clarify questions they may have regarding the progression of dementia, end of life care, and the NH environment. Further work is needed to evaluate its effectiveness and determine optimal use in clinical practice. This unique QPL is anticipated to facilitate discussions around dementia care, including self-care for family caregivers.

Removing Transfusion Dependence As a Barrier to Hospice Enrollment (BRUOG-407)

Background: Patients with hematologic malignancies (HM) receive more aggressive care at the end of life (EOL) and have suboptimal hospice utilization when compared to patients with solid tumors. One reason for this is a high rate of transfusion dependence (TD). Many hospice agencies decline to provide palliative transfusions because of cost, philosophical objections, and/or logistical barriers, and as a result, many TD patients delay hospice enrollment or never enroll at all. In response to a call from ASH for novel care models to address this issue, we designed a pilot study of an open access transfusion model in hospice care. Our hypothesis was that the provision of transfusions for patients with HM on hospice would be feasible and would result in timely hospice referral and less aggressive EOL care. Methods: We conducted a single-center, prospective pilot study [NCT05063591] enrolling adults with aggressive HM who were TD and hospice-eligible. We concurrently enrolled patients' primary caregivers. Patients were evaluated weekly during a clinic visit or telephone call to assess potential symptoms related to anemia or thrombocytopenia. Relevant symptoms triggered a CBC assessment, and, if appropriate, administration of a transfusion of red blood cells (RBCs) and/or platelets. Caregivers completed the Caregiver Evaluation of Quality of EOL Care survey (CEQUEL, Higgins et al. PLoS One, 2013) ≥1 month after the patient death, to assess perception of the patient's EOL care. The primary outcome was feasibility of the care model, defined as 70% rate of successful enrollment after screening. Secondary outcomes included standard EOL care quality measures: hospice length of stay (LOS), inpatient days and ICU days in the last 30 days of life, inpatient deaths, and the use of chemotherapy in the last 14 days of life. Exploratory outcomes included caregiver's assessment of EOL care quality. Results: Of 22 patients and 9 caregivers screened, 10 patients (45%) and 8 caregivers enrolled. 4 screened patients died before consenting. The median patient age was 80 (range, 69-90). Most patients (90%) had a myeloid malignancy (AML, MDS, or CMML). The mean number of transfusions on study was 2.4 units of RBCs (range, 0-9) and 1.2 units of platelets (range, 0-10) ( Figure). The most common transfusion-triggering symptom was fatigue (N=40 transfusion events), followed by shortness of breath (N=15). The median LOS on hospice was 13 days (range, 4-103; Table). 60% of patients spent &amp;gt;9 days on hospice, and no patient spent ≤ 3 days on hospice. All enrolled patients died outside of the hospital: 60% at home and 40% at inpatient hospice. No patient received chemotherapy within 14 days of death, and 1 (10%) was admitted to the ICU within 30 days of death (prior to trial enrollment). There were no disenrollments due to transfusion reactions. One patient (10%) revoked hospice for hospitalization, but re-enrolled and died in inpatient hospice. When caregivers evaluated their loved one's EOL care, 100% reported that the patient experienced a peaceful death; 100% felt that medical intervention did not result in increased suffering; 86% agreed that EOL was not prolonged by medical intervention longer than they would have wished, and 86% felt that the patient suffered much less than expected. The mean CEQUEL score was 24 (range, 20-26, higher scores indicating a better perception of EOL care). Conclusion: Providing blood transfusions to patients with HM on hospice was feasible in our symptom-driven care model. The enrollment rate was short of the 70% goal, but some screened patients died before enrolling, suggesting that hospice was considered too late in the disease course, and that additional factors beyond TD may contribute to suboptimal hospice utilization among these patients. When compared with our population-based study describing EOL outcomes of patients with HM (Egan et al., Blood Adv. 2020), our current outcomes compare favorably, with longer median time on hospice (13 vs 9 days), fewer hospital deaths (0 vs 27%), and less chemotherapy at the EOL (0 vs 13%). Importantly, caregiver perception of EOL care quality was favorable. Our findings illustrate the potential of palliative blood transfusions to improve the EOL care quality for HM patients on hospice, and highlight the need for earlier hospice referral while pursuing care models that address the specific needs of this unique TD population.

Palliative care research utilising intersectionality: a scoping review

BackgroundAccess to palliative care is recognised as a human right, yet clear disparities exist. There have been recent appeals to examine people’s contexts and interactions with social systems which for many, adversely influence their utilisation of palliative care. Intersectionality provides a way to understand these drivers of inequity and ultimately advocate for change.AimTo identify and describe published studies utilising intersectionality in relation to need, access and experience of palliative care.DesignA scoping review.Data sourcesMedline, PsycINFO, CINAHL and Google Scholar databases and a manual search were undertaken for studies published up to January 2023. Included studies were evidence based articles where palliative or end of life care was the focus and intersectionality was identified and/or applied to the research that was undertaken.ResultsTen published studies were included. An analytic framework was developed to identify the extent that intersectionality was utilised in each study. A wide range of different groups were researched across the studies, with most focusing on aspects of their participant’s identity in relation to palliative care access and experience. Common topics of power, heterogeneity of people within the health system and barriers to palliative care were illuminated across the studies.ConclusionsVery limited research to date has utilised intersectionality to understand access, utilisation and experience of palliative care. This scoping review demonstrates intersectionality can provide a way to illuminate rich understandings of inequity in palliative care. It is imperative that future palliative research incorporates an intersectionality focus to further clarify the needs and experiences of structurally marginalised groups.

Clinical Characteristics of Individuals with Interstitial Lung Diseases and Indication of End-of-Life Care

End-of-life care (EOLC) is palliative support provided in the last 6 months to 1 year of a patient’s life. Although there are established criteria for its indication, few studies describe the clinical and functional characteristics of individuals with interstitial lung diseases (ILD) in EOLC. ILD individuals underwent various assessments, including lung function, exercise capacity (6 min walk test), physical activity in daily life (PADL), peripheral muscle strength, maximal respiratory pressures, body composition, quality of life (SGRQ-I), symptoms of anxiety and depression, dyspnea (MRC scale), and sleep quality. Fifty-eight individuals were included and divided into two groups according to the indication for commencing EOLC (ILD with an indication of EOLC (ILD-EOLC) or ILD without an indication of EOLC (ILD-nEOLC). There were differences between the groups, respectively, for steps/day (2328 [1134–3130] vs. 5188 [3863–6514] n/day, p = 0.001), time spent/day carrying out moderate-to-vigorous physical activities (1 [0.4–1] vs. 10 [3–19] min/day, p = 0.0003), time spent/day in standing (3.8 [3.2–4.5] vs. 4.8 [4.1–6.7] h/day, p = 0.005), and lying positions (5.7 [5.3–6.9] vs. 4.2 [3.6–5.1] h/day, p = 0.0004), the sit-to-stand test (20 ± 4 vs. 26 ± 7 reps, p = 0.01), 4 m gait speed (0.92 ± 0.21 vs. 1.05 ± 0.15 m/s, p = 0.02), quadriceps muscle strength (237 [211–303] vs. 319 [261–446] N, p = 0.005), SGRQ-I (71 ± 15 vs. 50 ± 20 pts, p = 0.0009), and MRC (4 [3–5] vs. 2 [2–3] pts, p = 0.001). ILD individuals with criteria for commencing EOLC exhibit reduced PADL, functional performance, peripheral muscle strength, quality of life, and increased dyspnea.

Life-Sustaining Treatments Among Medicare Beneficiaries with and without Dementia at the End of Life.

Older adults with dementia including Alzheimer's disease may have difficulty communicating their treatment preferences and thus may receive intensive end-of-life (EOL) care that confers limited benefits. This study compared the use of life-sustaining interventions during the last 90 days of life among Medicare beneficiaries with and without dementia. This cohort study utilized population-based national survey data from the 2000-2016 Health and Retirement Study linked with Medicare and Medicaid claims. Our sample included Medicare fee-for-service beneficiaries aged 65 years or older deceased between 2000 and 2016. The main outcome was receipt of any life-sustaining interventions during the last 90 days of life, including mechanical ventilation, tracheostomy, tube feeding, and cardiopulmonary resuscitation. We used logistic regression, stratified by nursing home use, to examine dementia status (no dementia, non-advanced dementia, advanced dementia) and patient characteristics associated with receiving those interventions. Community dwellers with dementia were more likely than those without dementia to receive life-sustaining treatments in their last 90 days of life (advanced dementia: OR = 1.83 [1.42-2.35]; non-advanced dementia: OR = 1.16 [1.01-1.32]). Advance care planning was associated with lower odds of receiving life-sustaining treatments in the community (OR = 0.84 [0.74-0.96]) and in nursing homes (OR = 0.68 [0.53-0.86]). More beneficiaries with advanced dementia received interventions discordant with their EOL treatment preferences. Community dwellers with advanced dementia were more likely to receive life-sustaining treatments at the end of life and such treatments may be discordant with their EOL wishes. Enhancing advance care planning and patient-physician communication may improve EOL care quality for persons with dementia.

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

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. 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. 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]). Area-level socioeconomic disadvantage is not uniformly associated with poorer EOL cancer care, with differences among decedents of different racial groups.

Advance Care Planning: A Story of Trust Within the Family.

As the family usually plays a central role at the end of life, the quality of family relationships may influence how individuals approach advance care planning (ACP). Our study investigates the associations of trust in relatives with regard to end-of-life (EOL) issues-used as a proxy measure of family relationship quality-with individuals' engagement in EOL discussions, advance directive (AD) awareness, approval and completion, and designation of a healthcare proxy. Using nationally representative data of adults aged 55years and over from wave 6 (2015) of the Survey of Health, Ageing, and Retirement in Europe (SHARE) in Switzerland (n = 1911), we show that complete trust in relatives is related to higher engagement in ACP. Subject to patient consent, the family should, therefore, be included in the ACP process, as such practice could enhance patient-centered EOL care and quality of life at the end of life.

Quality of cancer treatment care before and after a palliative care pathway: bereaved relatives’ perspectives

ObjectiveAppropriate communication between healthcare providers and patients and their families is an essential part of good (palliative) care. We investigated whether implementation of a standardised palliative care pathway (PCP) facilitated...

Navigating parental requests: considering the relational potential standard in paediatric end-of-life care in the paediatric intensive care unit

Families and clinicians approaching a child’s death in the paediatric intensive care unit (PICU) frequently encounter questions surrounding medical decision-making at the end of life (EOL), including defining what is...

Mindfulness-Based Interventions for End-of-Life Professionals

In a recently published paper in this journal, Covington et al explored the potential advantages of mindfulness-based interventions (MBIs) for healthcare staff burnout and associated problems. In the demanding and emotionally charged field of end-of-life (EOL) care, healthcare professionals play a pivotal role in supporting patients and their families during their most vulnerable moments. However, as a recent systematic review reveals, the empirical research on MBIs in the context of EOL care is still in its nascent stages. This correspondence contributes to the research gap on mental health and self-care of EOL for professionals.

A comparison of end-of-life care quality for Veterans receiving hospice in VA nursing homes and community nursing homes.

While the Veterans Health Administration (VA) has long provided hospice care within VA community living centers (CLCs, i.e., VA nursing homes), an increasing number of Veterans are receiving hospice in VA-contracted community nursing homes (CNHs). However, little data exist about the quality of end-of-life (EOL) care provided in CNHs. The aim of this study was to compare family ratings of the quality of EOL care provided to Veterans receiving hospice in VA CLCs and VA-contracted CNHs. We conducted a retrospective analysis of national data from VA's electronic medical record and Bereaved Family Survey (BFS) for Veterans who received hospice in VA CLCs or VA-contracted CNHs between October 2021 and March 2022. The final sample included 1238 Veterans who died in either a CLC (n = 1012) or a CNH (n = 226) and whose next-of-kin completed the BFS. Our primary outcome was the BFS global rating of care received in the last 30 days of life. Secondary outcomes included BFS items related to symptom management, communication, emotional and spiritual support, and information about burial and survivor benefits. We compared unadjusted and adjusted proportions for all BFS outcomes between those who received hospice in CLCs and CNHs. The adjusted proportion of family members who gave the best possible rating (a score of 9 or 10 out of a possible 10) for the overall care received near EOL was more than 13 percentage points higher for Veterans who received hospice in VA CLCs compared to VA-contracted CNHs. Our findings also revealed quality gaps of even greater magnitude in specific EOL care-focused domains. Our findings document inadequacies in the quality of multiple aspects of EOL care provided to Veterans in CNH-based hospice and illuminate the urgent need for policy and practice interventions to improve this care.

Abstract 17891: Underutilization of Palliative Care Consults and End-of-Life Care Planning After Cardiogenic Shock

Background: Cardiogenic shock (CS) is associated with significant mortality. The 2022 ACC/AHA/HFSA guidelines discuss the importance of palliative care (PC) in advanced heart disease, but PC and end-of-life care (EOLC) integration after CS is not well characterized. We aimed to study the use of PC and EOLC planning after CS. Hypothesis: We assessed the hypothesis that PC consults and EOLC planning are underutilized after CS. Methods: This is a retrospective observational study of 63 consecutive patients at a quaternary care center in Boston diagnosed with CS between January and April 2022. CS onset and etiology were adjudicated by treating physicians. Results: Of 63 patients with CS (mean age 61±14 years, 30% Female, 73% White), 26 (41%) died during admission and 31 (49%) survived 1 year after CS onset. Only 6 patients (10%) received PC consults for EOLC considerations (consults placed on average 9 days from CS onset) (Table 1). Only 24 (38%) had documented advanced care plans after developing CS, of which 14 were documented by PC consultants. Of 44 patients with MCS or ICD placed, only 1 had a documented discussion about the option of discontinuing the therapy in the future. After CS, 28 (44%) had changes in resuscitation limits. Only 1 patient had their preferred location of death documented. Palliative inotropes were prescribed to 2 patients at discharge, and 3 patients were discharged to hospice. Readmission rates at 3 and 6 months were 24% and 36%, respectively. Conclusions: PC and EOLC planning are underutilized after CS, despite the significant mortality of CS. Secondary PC models may not be optimal for CS, given the acute presentation of CS and bimodal distribution of survival after onset. These data demonstrate a compelling need to address key considerations that impact EOLC after CS, such as resuscitation limits, duration of advanced therapies, and goal-concordant discharge locations. Further research is needed to explore optimal models of PC and EOLC integration after CS.

Abstract 18112: LVAD Recipient and Caregiver Perspective on Prognosis and End of Life Care: A Qualitative Study

Background: For left ventricular assist device (LVAD) recipients and caregivers, accurate understanding of prognosis is central to shared decision making. Our study evaluates (i) patient and caregiver estimated survival after a LVAD and (ii) describes how patients and caregivers rationalize estimated survival. Methods: We conducted a qualitative study with 18 LVAD recipients and 9 caregivers using semi-structured interviews. Interviews were transcribed and coded, with themes identified using rapid qualitative analysis. Results: Included patients had a median (range) age of 60.5 (28-83) years, 12 (67%) were men and 10 (56%) received their LVAD as destination therapy (DT). Participating caregivers included 8 (89%) women supporting 5 (56%) DT LVAD recipients. Depression was reported by 7 (39%) patients and 2 (22%) caregivers. Reported quality of life was low for most participants [median EQ-VAS score 60 (range 25-70) for patients and 50 (range 20-80) for caregivers]. Only 6 patients reported willingness to trade survival in favor of better quality of life. In the event of cardiac arrest, 15 (83%) patients and 7 (78%) caregivers reported wanting CPR for themselves or loved one. Although most participants reported health concerns primarily relating to their cardiac health and LVAD complications, both patients and caregivers provided high estimates of life expectancy [median 16 (range 3-45) and 14 (range 3-32) years respectively]. We identified three themes explaining how LVAD recipients and caregivers rationalize their estimated survival (i) survivor’s bias (ii) optimism (iii) minimization. Exemplary quotes are provided in the Table below. Conclusions: Several patients and caregivers reported low quality of life with concerns around poor cardiovascular health and LVAD complications. However, their estimated survival frequently exceeded clinically observed survival. This suggests an opportunity for improving patient-physician prognosis communication.

The experience of bereaved cancer carers in rural and regional areas: The impact of the COVID-19 pandemic and the potential of peer support.

Caring for someone with cancer during end of life care can be a challenging and complex experience. Those living in rural and regional areas are less likely to have local healthcare services and may be physically isolated. Even where support services such as respite do exist, they may be less likely to be accessed due to the time burden in travelling to services. This was compounded by the COVID-19 pandemic. To understand the potential benefits of peer support for bereaved carers of people with cancer from rural and regional locations during the COVID-19 period. Phone interviews were conducted with bereaved cancer carers living in rural and regional areas in Victoria. Semi-structured interviews were used, and participants were asked about their experience as a carer, bereavement and the potential for peer support. Interviews were audio recorded and transcribed verbatim; transcripts were coded and a thematic analysis was conducted. 12 interviews were conducted. Carers were mostly female (85%) and were on average 58 years of age (range 42-71). Interviews lasted an average of 58 minutes (range 53-91 minutes). Three themes were derived from the data; 1) Supportive care needs while caring and the impact of COVID-19; 2) Isolation during bereavement compounded by the COVID-19 pandemic; and 3) Peer support requires flexibility to meet diverse needs. Peer support has potential to assist bereaved carers of people with cancer. A co-design approach may be beneficial for developing a flexible model for supporting and linking carers together.

End-of-Life Outcomes in Patients with Acute Myeloid Leukemia Receiving Non-Curative Chemotherapy

Background: Patients with acute myeloid leukemia (AML) frequently have poor-quality end of life (EOL) care including intensive care unit admissions and prolonged hospitalizations. Prognostic uncertainty and restrictions on transfusions during hospice are barriers that prevent patients with AML from having access to palliative care services. There is a paucity of data on EOL care on patients with AML that are unable to continue a venetoclax and hypomethylating agent (HMA-ven) treatment. Methods: A query was conducted using Northwell Cancer Institute's electronic health records to identify all transplant-ineligible patients with AML who received HMA-ven between January 2019 and December 2022 that had died. We retrospectively analyzed the charts of 84 patients who fit the criteria. EOL outcomes including rate of advanced care planning, location of death, and resource utilization were recorded. Overall survival (OS) was defined as the time from start of the last line of chemotherapy to death for patients that had disease-modifying treatment at EOL. For those that continued to best supportive care (BSC), OS was defined as the time from stopping the last dose of chemotherapy to death. Hospice length of stay (HLOS) was the time from a hospice referral to death for patients that chose to stop transfusions and pursue hospice. Kaplan-Meier method and log rank testing were used to compare time to event data. Results: In our cohort of 84 patients, 43% of patients died on hospice, 53% of patients died in the hospital, with 23% requiring an ICU admission at the end of life. 18% had either cardiopulmonary resuscitation (CPR) or an activation of the emergency response system within 24 hours of death. While more than half of patients opted to not have CPR, 15% of these decisions were made within the last 24 hours of life. Furthermore, of the patients only 65% saw a palliative care physician while admitted for treatment. Of note, 42 patients tolerated HMA-ven and were continued to take this medication until their death. However, 42 patients stopped HMA-Ven due to progression of disease (69%) or intolerance (31%). Of this cohort, 15 patients continued to subsequent line therapy following HMA-ven with a median OS of 56 days. 24 patients continued on to hospice without transfusion support, with a median HLOS of 7 days. Seven patients continued BSC with median OS of 41 days, requiring an average of 1.6 transfusions weekly. Of note, the patients that continued BSC did not transition to hospice as these patients were unable or unwilling to stop transfusions. There was no statistical difference in OS between receiving subsequent chemotherapy and BSC at EOL (p = 0.40). Patients receiving BSC had a lower percentage of patients dying in the ICU (55% vs 40%) and documented advanced directives with a health care proxy (29% vs 7%) compared to those that had received chemotherapy at EOL. Discussion: Our study identified opportunities to improve EOL care and goal-concordant care in patients with AML receiving non-curative therapy. A subset of this population significantly benefitted from transfusion-only support and stopping disease modifying treatment. Opting for BSC may drastically improve the EOL quality by decreasing ICU deaths and improving access to goal-concordant care. Further research on the timing of best supportive care to patients with AML undergoing non-curative intent therapy as opposed to continuing subsequent line chemotherapy regimens is needed.

The influence of religion/spirituality (R/S) on end of life (EOL) outcomes among patients of Dharmic religions with cancer: A mixed methods study.

230 Background: Spiritual support of cancer patients has been associated with improved EOL outcomes; however, little is known about EOL experiences among cancer patients who identify with a Dharmic religion (DR; Hinduism, Buddhism, Sikhism, Jainism). This study used mixed methods to evaluate utilization and EOL care preferences among DR cancer patients. Methods: We conducted a secondary analysis of data from a separate retrospective study of utilization of chaplaincy services by patients hospitalized at a specialty cancer center in New York City between 2015 and 2019. This database included information about patients' religious identification and about accepted measures of EOL care utilization: hospice enrollment in the last 3 days; chemotherapy use in the last 14 days; urgent care center (UCC) visits or ICU admissions within the last 30 days; and inpatient deaths. Bivariate analyses examined associations between religious identification and EOL care metrics. In 2020, we prospectively conducted semi-structured qualitative interviews to explore EOL care preferences among DR patients with cancer at this hospital. Data were coded and analyzed independently and iteratively by two investigators, and themes were identified. Results: Among 28711 patients (99% NDR), DR patients had significantly higher rates of EOL care utilization on every measure (Table). Only 41% of DR patients had ≥ 1 chaplaincy visit. Twenty-two patients (91% Hindu, 9% Sikh) and 11 NDR chaplains were interviewed. Few patients felt religion influenced their preferences for CPR and intubation. Some patients felt uncomfortable discussing EOL practices with their care team, and several chaplains acknowledged lacking knowledge in EOL practices. To improve EOL care for DR patients, chaplains suggested improving chaplaincy training and developing relationships with community-based leaders and volunteers. Conclusions: While DR patients had higher EOL care utilization, most did not report religion influenced their EOL care preferences. Chaplains’ unfamiliarity with DR-specific EOL practices was identified as a barrier. Future work to optimize EOL care for DR patients should improve chaplaincy training and access to faith-concordant spiritual care providers.[Table: see text]