Improve End Of Life Care Research Articles

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.

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.

Hospital use at the end-of-life among elderly Medicare beneficiaries diagnosed with poor prognosis cancers.

232 Background: Hospital care for patients with cancer near the end of life (EOL) may reflect poor symptom management and be associated with worse quality of life. We quantified hospital use and in-hospital deaths among elderly Medicare beneficiaries with cancer. Methods: Medicare fee-for-service beneficiaries aged ≥65 years diagnosed with poor prognosis cancers, i.e., breast (stage IV), prostate (stage IV), non-small cell lung (NSCLC; stages III-IV), small cell lung (SCLC; all stages), and pancreas (all stages) cancers in 2008-2019 and died of cancer in 2014-2019 were identified from the linked SEER-Medicare data. The number of hospitalizations, intensive care unit (ICU) admissions, and in-hospital deaths during the last six months and last 30-days of life were examined with descriptive statistics (proportions, means, and rates per 100 person-months [PM]) by cancer site. Results: The final sample consisted of 40,304 patients diagnosed with poor prognosis cancers (mean age: 75.0 years). Among patients with pancreas and SCL cancers, nearly half died within 6 months of diagnosis. In contrast, six-month mortality was lower among patients with stage IV breast and prostate cancers. Among all patients in the last 6 months of life, there were 31.2 hospitalizations per 100 PM, with a mean of 2.02 hospitalizations among patients with any hospitalization. In patients with last 30 days of life, 34.7% had any hospitalization. Among hospitalized in the last 30 days, 43.4% were treated in an ICU and 35.2% died in hospital. Hospitalizations were high across all cancer types measured. Conclusions: Utilization of inpatient services among patients diagnosed with poor prognosis cancers is high near the EOL, which suggests sub-optimal care. Future studies should investigate patient and provider factors associated with such utilizations and identify opportunities to improve EOL care.[Table: see text]

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]

Dying and Death in a Pediatric Cardiac ICU: Mixed Methods Evaluation of Multidisciplinary Staff Responses.

Understanding factors influencing quality of pediatric end-of-life (EOL) care is necessary to identify interventions to improve family and staff experiences. We characterized pediatric cardiac ICU (PCICU) staff free-text survey responses to contextualize patterns in quality of dying and death (QODD) scoring. This mixed methods study reports on a cross-sectional survey of PCICU staff involved in patient deaths. Single, quaternary PCICU from 2019-2021. Multidisciplinary staff (bedside nurses, allied health professionals, and medical practitioners) rated QODD and voluntarily added free-text responses. We derived descriptive categories of free-text responses using content analysis. Response sentiment was classified as positive, negative or both positive and negative. We compared category and sentiment frequency by discipline, EOL medical intensity, years of experience and QODD score quartiles. None. Of 60 deaths and 713 completed staff surveys, 269 (38%) contained free-text responses, including 103 of 269 (38%) from nurses. Of six qualitative categories (i.e., relational dynamics, clinical circumstances, family experiences, emotional expressions, temporal conditions, and structural/situational factors), relational dynamics was most frequent (173 responses). When compared by discipline, family experiences were more common in nursing responses than medical practitioners or allied health. High intensity was associated with infrequent discussion of family experience and greater focus on temporal conditions and clinical circumstances. Emotional expressions and temporal conditions were more common in lowest QODD quartile surveys. Although 45% staff responses contained both sentiments, relational dynamics and family experiences were more likely positive. Negative sentiments were more common in the lowest QODD quartile surveys and responses containing temporal conditions or structural/situational factors. Synergistic relationships between the multidisciplinary team and family shaped clinician's positive responses. Attention to team dynamics may be a crucial ingredient in interventions to improve EOL care. Our data support that team-based education initiatives should consider differential foci between disciplines and EOL characteristics.

0740 Factor Structure of Sleep in Older Adults Differs when Nearing End-of-Life

Abstract Introduction Adults aged 65 and older in the last year of life are at risk for experiencing non-beneficial hospitalizations, adversely effecting their quality-of-life. Reasons for undesired hospitalizations include the need to manage symptoms of progressing chronic illnesses, many of which are exacerbated by poor sleep. Given the complexity of sleep, especially as end-of-life (EOL) nears, it is imperative to understand if the myriad of variables traditionally used to describe sleep can be simplified. Insight gained by such knowledge could be used to guide assessment of sleep at EOL and identification of sleep-related interventions to improve EOL care. Methods Exploratory factor analyses (EFAs) were performed using data from rounds of the National Health and Aging Trends Study (NHATS) that included in-depth sleep modules. One EFA was performed for individuals who died before the next round, and another for those who did not. Ten variables were considered for each EFA, and comprised sleep disorders symptoms, sleep quality, and daytime consequences. Results There were three unique constructs each for the died and not-died groups. Among NHATS participants who had died, sleep experience (>30 mins falling asleep, try falling back asleep, time falling back asleep, sleep hours, and quality of sleep), tiredness (difficulty staying awake, how often nap), and EOL symptoms (sleep meds, breathing, and pain) explained 47.5% of the variability in sleep (n=122). Among NHATS participants who had not died, sleep disorder symptoms (>30 mins falling asleep, try falling back asleep, time falling back asleep, sleep hours, breathing, and quality of sleep), discomfort (pain, difficulty staying awake, how often nap), and sleep medication explained 40.9% of the variability in sleep (n=124). Conclusion Older adults nearing the EOL have different factor structures describing their sleep than those who are not near EOL. Napping and daytime sleepiness as well as pain, medication, and breathing for sleep have important implications for those nearing EOL that could be addressed by palliative care interventions. Support (if any) No support was provided for this study. Dr. Klingman is funded, in part, by NINR Award Number R01 NR018979. Dr. Sullivan is funded, in part, NIA Award Number R03 AG067159.

Advance Care Planning and Parent-Reported End-of-Life Outcomes in the Neonatal Intensive Care Unit.

This study aimed to evaluate the impact of advance care planning (ACP) on parent-reported end-of-life (EOL) outcomes in the neonatal intensive care unit (NICU). Single-center, cross-sectional mixed-methods survey study of bereaved parents who experienced the death of a child in the Boston Children's Hospital NICU between 2010 and 2021. Logistic regression, chi-square test, Fisher's exact test, and Wilcoxon rank-sum test were used to evaluate the relationship between ACP and parent-reported EOL outcomes. Qualitative content was analyzed through inductive coding. A total of 40/146 (27%) of eligible parents responded to our survey. There was a significant association between ACP and improved EOL care processes and parental satisfaction with communication. Parents with ACP were more likely to report goal-concordant care and higher levels of perceived shared decision-making. Qualitatively, emerging themes in parents' descriptions of goal-concordant care included misaligned expectations and communication. Emerging themes for parental preparedness included infant symptoms, logistical aspects, impact on parents, and degrees of preparedness. For decisional regret, the primary theme was reevaluating supports. ACP is associated with improved EOL care outcomes and parents qualitatively conceptualize goal-concordant care, preparedness for their child's death, and decisional regret in nuanced ways. Families should have the opportunity to participate in ACP discussions that meet their unique communication and decision-making needs. · ACP is associated with improved parent-reported end-of-life outcomes.. · Parents conceptualize end-of-life care outcomes in nuanced ways.. · Families should have the opportunity to participate in ACP discussions that meet their unique needs..

Specialized Palliative Care and Intensity of End-of-Life Care Among Adolescents and Young Adults with Cancer: A Medical Chart Review.

Purpose: Adolescents and young adults (AYAs) with cancer often undergo aggressive end-of-life (EOL) care. We evaluated whether specialized palliative care (SPC) involvement is associated with the receipt of intensive EOL care among AYAs. Methods: This retrospective study included patients with cancer treated between the ages of 15 and 39 years at a university hospital, who died during 2009-2022. The primary outcome was high-intensity EOL (HI-EOL) care, which was defined as ≥1 session of intravenous chemotherapy <14 days from death or during the final 30 days of life, ≥1 hospitalization at an intensive care unit, >1 emergency room admission, or >1 hospitalization at an acute care unit during the final 30 days of life. We determined predictors of outcomes using multiple logistic regression models. Results: We analyzed 132 AYAs (75 with SPC involvement), of whom 42.4% (95% confidence interval [CI]: 33.9%-51.3%) underwent HI-EOL care. The prevalence of HI-EOL care was significantly lower in those who had SPC involvement than in those without SPC involvement (adjusted odds 0.30; 95% CI: 0.13-0.69; p = 0.005). Using no SPC involvement group as a reference, the adjusted odds for SPC involvement ≤60 days and >60 days were 0.71 (95% CI: 0.18-2.78; p = 0.63) and 0.22 (95% CI: 0.09-0.57; p = 0.002), respectively. Conclusion: In AYAs with cancer, SPC involvement and duration were associated with a lower incidence of HI-EOL care. Thus, integrating SPC into oncology may improve EOL care for AYAs.

Facilitators and Barriers for Initiating Conversations About End of Life.

Conducting a conversation about wishes for treatment at end of life (EOL) has been shown to improve EOL care for patients and relatives. Still, only a minority of physicians conduct the conversation, which might lead to unwanted interventions and treatments. The purpose of this survey was to examine which factors facilitate and hinder physicians across a wide range of health care facilities to initiate the conversation about wishes for treatment at EOL. A questionnaire survey based on a Delphi-developed questionnaire. The questionnaire was sent to both hospital physicians and general practitioners (GPs) in a Danish region. More than 3000 physicians were invited to participate in the survey. Of these, 782 responded, 622 working at a hospital department, and 160 from general practice clinics. Results showed that senior physicians, GPs, and physicians working in a medical department feel best equipped to conduct the conversation. Moreover, senior physicians pointed to their experience as physicians as being of great importance for conducting the conversation, whereas junior physicians found training in conducting the conversation as an important factor. Our study indicates that different factors depending on the health care setting and the seniority of the physician facilitate or hinder physicians from conducting the conversation about wishes for treatment at EOL. Being aware of these differences and making a concerted effort depending on setting and seniority might help implement and conduct the conversation.

Effect of Palliative Care Decision on Use of Hospital Services in Pancreatic Cancer Patients: A Retrospective Study.

Continuing chemotherapy or using hospital services near the end of life (EOL) and delaying the approach to palliative care (PC) services are factors impairing quality of life near the EOL. Records of patients with pancreatic cancer treated at Helsinki University Hospital in 2013 and deceased by the end of 2014 were reviewed (N=221). The PC decision establishes the point when anticancer treatment is interrupted and the focus shifts to symptom-centered PC. The timing of the PC decision, referrals to specialized PC, use of hospital services at the EOL, and place of death were examined. The median overall survival was 13 months from diagnosis. The PC decision was made <30 days prior to death or not at all for 44% of patients. In addition, 68% of these patients used hospital service in the last month of life compared to 32% of patients with an earlier PC decision (p<0.001). A later or lacking PC decision correlated with a larger proportion of deaths in a secondary or tertiary hospital (64% vs. 36%), but the difference was not statistically significant (p=0.25). A late or lacking PC decision for patients with pancreatic cancer was found in almost half of the patients. There was a significant difference in the use of hospital services depending on the timing of the decision. An earlier PC decision might improve EOL care, since a late or lacking PC decision relates to a more abundant use of hospital services and an increased risk of hospital deaths.

S1172 Early Palliative Care Referral May Improve End of Life Care in End-Stage Liver Disease Patients. A Retrospective Analysis From a Non-Transplant Center

Introduction: Patients with End Stage Liver Disease (ESLD) who are not transplant candidates often have a trajectory of rapid decline and death similar to patients with stage IV cancer. Palliative care (PC) services have been shown to be underutilized for such patients. Most studies examining the role of PC in ESLD have been done at transplant centers. Thus, determining the utilization and benefit of PC at a non-transplant tertiary center may help establish a standard of care in the management of transplant-ineligible patients with ESLD. Methods: We conducted a retrospective analysis of adult patients with ESLD admitted to Rochester Regional Health (RRH) system hospitals from 2012 to 2021. Patients were divided into groups based on presence (Group 1) or absence (Group 2) of PC involvement. Baseline characteristics were recorded. Impact of PC was assessed by comparing number of hospitalizations before and after PC referral, comparing code status changes, health care proxy (HCP) assignments, and requirement of repeated paracentesis. Results: 576 patients were analyzed of which 237 received a PC consult (Group 1) and 339 did not (Group 2). Baseline characteristics were comparable in both groups (Table). Mortality rate was significantly higher in group 1 than group 2 (83.1 vs 46.4%, p < 0.01). Changes in code status were higher in group 1 than in group 2 (77.6% vs 29.2%, p < 0.001). 59.9% in group I had comfort care code status and 67.8% in group 2 had full code. Patients in group 1 were more likely to have an HCP assigned (63.7% vs 37.5%, p < 0.001). Aspira catheter use (5.9% vs 0.9%, p < 0.001) and hospitalizations for frequent paracentesis (30.8% vs 16.8%, p < 0.001) were both more frequent in group 1. Mean number of emergency room visits or hospitalizations before the first PC consult was 15.6 and mean number of admissions after PC consult was 3.4 (P< 0.001). Conclusion: Our study shows that PC referral in patients with ESLD is associated with a higher rate of code status changes, HCP assignments and reduced hospitalizations. Patients receiving a PC referral were more likely to have a comfort care status while patients without a PC referral were more likely to be full code. Mortality rates at our non-transplant center were higher in patients with palliative care referral than those without. It suggests that patients did not receive a PC referral unless their disease severity was significant, however all patients with ESLD may benefit from early PC referral. Table 1. - Baseline characteristics and outcomes Variable PC involved (237) PC not involved (339) P-value Age (years) 64.61 64.07 0.58 Sex (% male) 57.40% 55.20% 0.59 Hepatocellular carcinoma 11 (4.6%) 12/339 (3.5%) 0.38 Transplant referral done 41 (17.3%) 72/339 (21.2%) 0.29 Mortality 196 (83.1%) 157 (46.4%) < 0.0001 Aspira catheter 14 (5.9%) 3 (0.9%) < 0.001 Frequent paracentesis 73 (30.8%) 57 (16.8%) < 0.001 TIPS procedure 8 (3.4%) 24 (7.1%) 0.06 Code status changes 184 (77.6%) 99 (29.2%) < 0.001 Full code 44 (18.6%) 230 (67.8%) < 0.001 Comfort care 142 (59.9%) 70 (20.6%) < 0.001 HCP assignments 151 (63.7%) 127 (37.5%) < 0.001

Patients' perceptions of treatment benefits and correlation with end-of-life quality markers in advanced malignancy.

188 Background: High-quality end-of-life (EOL) care is a recognized goal for modern cancer care delivery. Illness perception is often inaccurate among patients with cancer and may be associated with the quality of EOL care. We surveyed patients receiving palliative cancer-directed therapies to assess associations between accuracy of perceived likelihood of treatment response and recognized EOL quality measures in a cohort of patients with advanced solid malignancies. Methods: Patients and their oncologists were surveyed regarding perceived benefits of palliative cancer-directed therapies. Accuracy of perception was calculated as patient-assessed minus physician-assessed likelihood of benefit, expressed as a score from -100 to 100, with positive scores indicating that the patient was more optimistic than the oncologist with regards to treatment response. For deceased patients, data on quality of EOL measures, including timing of recent chemotherapy, emergency room (ER) visits, hospitalizations, and intensive care unit (ICU) admissions, hospice enrollment, and location of death were collected. The primary outcome consisted of a composite of ER visit, hospitalization, or ICU admission within 30 days, and/or chemotherapy within 14 days of death. We tested for associations between the unadjusted mean and 95% confidence interval perception of treatment response and EOL metrics. Results: Of 69 patients, median age was 67 years (interquartile range: 61-75), and 50% were male. Cancers included lung (32%), gastrointestinal (22%), genitourinary (16%) and gynecological (16%). Treatments at time of enrollment included cytotoxic chemotherapy (65%), immunotherapy (23%) and oral targeted therapy (12%). Most patients (67%) enrolled in hospice &gt; 7 days prior to death, and 59%, 19%, and 46% were hospitalized, had ICU admission, or an ER visit within 30 days of death, respectively. 12% received cancer-directed systemic therapy in the last 14 days of life. Patients’ accuracy of estimated treatment response was lower for patients with the composite quality outcome, suggesting poorer EOL quality, though this was not statistically significant (20.5, 95% CI: 12.4–28.7 vs. 28.5, 95% CI: 18.0–38.9, p = 0.24). Patients enrolled in hospice &gt; 7 days before death had less accurate perception of treatment benefit (28.1, 95% CI: 20.5–35.8 vs. 13.5, 95% CI: 2.5–24.4, p = 0.03). There was no significant difference for other individual EOL quality measures (all p≥0.17). Conclusions: In this cohort of patients with advanced solid cancer, higher EOL quality measures did not correlate with accuracy of perception of treatment responses. Patients who were more optimistic compared to their treating oncologists were more likely to be enrolled in hospice for &gt; 7 days before death. Improving EOL care for patients with advanced cancer requires more than ensuring accurate patient understanding of treatment goals.

Evaluating end-of-life care capacity building training for home care nurses

BackgroundWith the rapidly aging population, the quality of end-of-life (EOL) care has become a significant issue. As the majority of deaths in Hong Kong (HK) currently occur in public hospitals, promoting palliative home care can relieve hospital burden and provide good deaths. There is a practical need to properly educate and train nurses on the skills to provide EOL care in home care settings. ObjectivesTo evaluate the effect of the first EOL care training program for nurses working in home care settings or nursing homes on quality of life at work, orientation toward dying and death, and self-competence in death work. DesignA pre-experimental research design was utilized to conduct this study using a one-group pretest and posttest approach. Settings and participantsA convenience sample of 153 nurses working in home care settings or nursing homes in HK was selected. MethodsParticipating nurses attended two-day entry-level and seven-day advanced-level courses. Quality of life at work, multidimensional orientation toward dying and death, and self-competence in death work were assessed using questionnaires at baseline and immediately after entry- and advanced-level training. ResultsThe results revealed that nurses reported a higher level of compassion satisfaction (d = 2.52, p < 0.001), less burnout at work (d = −3.25, p = 0.045), less fear about their own death (d = −1.33, p = 0.019), and more acceptance of others' deaths (d = 1.07, p = 0.004) in post-advanced-level courses. In general, participants were satisfied with the delivery method, duration, and logistical arrangement of the courses. ConclusionsNurses reported improved professional quality of life, less fear, and more acceptance toward death and dying after the training program. More educational strategies, such as role-play and case study discussions, are needed to improve the overall learning experience and effectiveness of the program. Future studies could add a qualitative component to yield deeper insights through the findings. As training programs allow nurses to cultivate their skills in clinical situations, there is an undeniable need to continue implementing standardized education and training for palliative care nurses to improve EOL care quality.

Preferences for End-of-Life Care Among Patients With Terminal Cancer in China

In China, little is known about end-of-life (EOL) care preferences of patients with terminal cancer. Understanding these patients' treatment preferences is needed to improve patient-centered health care, better inform surrogates and medical staff about patient preferences, and enhance the quality of EOL care. To examine preferences for EOL care among patients with terminal cancer in China. In this survey study, patients older than 50 years who had terminal cancer were randomly selected from medical records at a single hospital in China. Data on patients' EOL care preferences were collected by discrete choice experiment (DCE) from August to November 2018 and were analyzed from October 2020 to March 2021. The main outcome was patient preferences in EOL care, derived using a mixed logit model. Each DCE scenario described 6 attributes: hospitalization days, life extension, quality of life, adverse treatment events, place-of-death preference, and out-of-pocket costs. The marginal willingness to pay (WTP) in US dollars was estimated from regression coefficients. Of 188 patients selected for the survey, 183 participated (97.3%). Among the respondents, the mean [SD] age was 61 [8.4] years, and 128 (69.8%) were male. Patients' preferences for moderate increase in survival time, better quality of life, death at home, and lower out-of-pocket costs were significantly associated with their choices between treatment models. Extending life by 10 months (vs 4 months: β, 1.63; 95% CI, 0.81-2.44) and a better quality of life (very good vs poor: β, 1.79; 95% CI, 0.96-2.62) were the most important attributes to patients. The uptake rate for a treatment scenario increased by 61.6% when the quality of life improved from poor to very good, and when life extension increased from 4 months to 10, the uptake rate increased by 57.2%. The uptake increased by 12.5% when the place of death changed from hospital to home. However, it decreased by 31.4% when the costs increased to $21 174. The study found a WTP of $38 854 (95% CI, $19 468-$95 096) to improve quality of life from a poor to a very good level, substantially higher than the WTP for a life extension of 6 months ($35 308; 95% CI, $17 745-$80 279) or 1 year ($27 572; 95% CI, $16 389-$58 027) compared with the baseline scenario of a 4-month extension. Patients were willing to pay $8860 (95% CI, $621-$26 474) to die at home rather than in a hospital. The findings suggest that in addition to extending life moderately for patients with terminal cancer, improving quality of life during EOL care and supporting home deaths may deserve greater attention. The findings also suggest that physicians and surrogates should ask about patients' care preferences and better inform them of their choices to improve EOL care outcomes.

Comparison of Advance Care Planning and End-of-Life Care Intensity Between Dementia Versus Cancer Patients.

While advanced care planning (ACP) is recommended in dementia and cancer care, there are unique challenges in ACP for individuals with dementia, such as the insidious onset and progression of cognitive impairment, potentially leading to high-intensity care at the end of life (EOL) for this population. To compare ACP completion and receipt of high-intensity care at the EOL between decedents with dementia versus cancer. Retrospective longitudinal cohort study. Participants of the U.S. Health and Retirement Study who died between 2000 and 2014 with dementia (n = 2099) and cancer (n = 1137). Completion of three types of ACP (living will, durable power of attorney for healthcare [DPOAH], discussions of preferences for EOL care) and three measures of EOL care intensity (in-hospital death, intensive care unit [ICU] care in the last 2 years of life, life support use in the last 2 years of life). Use of living will was lower in dementia than in cancer (adjusted proportion, 49.9% vs. 56.9%; difference, - 7.0 percentage points [pp, 95% CI, - 13.3 to - 0.7]; p = 0.03). Use of DPOAH was similar between the two groups, but a lower proportion of decedents with dementia had discussed preferences compared to decedents with cancer (53.0% vs. 68.1%; - 15.1 pp [95% CI, - 19.3 to - 10.9]; p < 0.001). In-hospital death was higher in dementia than in cancer (29.5% vs. 19.8%; + 9.7 pp [95% CI, + 5.9 to + 13.5]; p < 0.001), although use of ICU care was lower (20.9% vs. 26.1%; - 5.2 pp [95% CI, - 9.8 to - 0.7]; p = 0.03). Use of life support was similar between the two groups. Individuals with dementia complete ACP less frequently and might be receiving higher-intensity EOL care than those with cancer. Interventions targeting individuals with dementia may be necessary to further improve EOL care for this population.

Hospice delivery models and survival differences in the terminally ill: a large cohort study

ObjectiveA common difficulty at the end of life (EOL) is to determine an appropriate service model, such as hospice share care (HSC), hospice inpatient care (HIC) and hospice home care...

Being Heard: A Qualitative Study of Lithuanian Health Care Professionals' Perceptions of Dignity at the End-of-Life.

Background: The literature on professionals’ perceptions of dignity at the end-of-life (EOL) shows that there is a need for studies set in different cultural contexts. Lithuania represents one of these little-studied contexts. The aim of this study is to understand professionals’ attitudes, experiences, and suggestions concerning EOL dignity to provide knowledge upon which efforts to improve EOL care can be grounded. The research questions are “How do Lithuanian health care professionals understand the essence of dignity at the end-of-life of terminally ill patients?” and “How do they believe that dignity at the EOL can be enhanced?”. Materials and Methods: The study was exploratory and descriptive. It employed an interpretive phenomenological method to understand the essence of the phenomenon. Lightly structured interviews were conducted with professionals who had EOL experience, primarily with elderly and late middle-aged patients. from medicine, nursing, social work, and spiritual services. The interviews were primarily conducted by audiovisual means due to pandemic restrictions. Using a constant comparative method, the research team systematically codified text and developed themes by consensus after numerous analytic data iterations. Results: Four primary themes about EOL dignity were identified: Physical Comfort, Place of Care and Death, Effects of Death as a Taboo Topic, and Social Relations and Communication. A fifth, overarching theme, Being Heard, included elements of the primary themes and was identified as a key component or essence of dignity at the EOL. Conclusions: Patient dignity is both a human right and a constitutional right in Lithuania, but in many settings, it remains an aspiration rather than a reality. Being Heard is embedded in internationally recognized patient-centered models of EOL care. Hearing and acknowledging individuals who are dying is a specific skill, especially with elderly patients. Building the question “Is this patient being heard?” into practice protocols and conventions would be a step toward enhancing dignity at the EOL.

What is a Good Death? A Choice Experiment on Care Indicators for Patients at End of Life

ContextHealth systems should aim to deliver on what matters most to patients. With respect to end of life (EOL) care, knowledge on patient preferences for care is currently lacking. ObjectivesTo quantify preference weights for key EOL care indicators. MethodsWe developed a discrete choice experiment survey with 13 key indicators related to patients’ experience in the last six weeks of life. We fielded the survey to a web-panel of caregiver proxies for recently deceased care recipients. We obtained 250 responses in each of five countries: India, Singapore, Kenya, the UK and the US. Latent-class analysis was used to evaluate preference weights for each indicator within and across countries. ResultsA 2-class latent-class model was the best fit. Class 1 (average class probability = 64.7%) preference weights were logically ordered and highly significant, while Class 2 estimates were generally disordered, suggesting poor data quality. Class 1 results indicated health care providers’ ability to control patients' pain to desired levels was most important (11.5%, 95% CI: 10.3%–12.6%), followed by clean, safe, and comfortable facilities (10.0%, 95% CI: 9.0%–11.0%); and kind and sympathetic health care providers (9.8%, 95% CI: 8.8%–10.9%). Providers’ support for nonmedical concerns had the lowest preference weight (4.4%, 95% CI: 3.6%–5.3%). Differences in preference weights across countries were not statistically significant. ConclusionResults reveal that not all aspects of EOL care are equally valued. Not accounting for these differences would lead to inappropriate conclusions on how best to improve EOL care.

Barriers to the provision of optimal care to dying patients in hospital: a cross-sectional study of nurses’ perceptions

Objectives: To examine in a sample of nurses working in acute-care wards, self-reported perceptions of the: 1) patient; family; nurse; doctor; and health system-related barriers to the provision of optimal end-of-life care to people who are dying in hospital; and 2) five barriers which, if removed, would lead to the greatest improvements in hospital-based end-of-life care. Background: Nurses play a central role in caring for dying patients and can offer a unique perspective about the factors that impact the quality of end-of life care delivered in hospitals. Study design and methods: Two hundred and fifteen registered and enrolled nurses from three metropolitan and three rural hospitals across three health services completed a questionnaire-based, cross-sectional study between April 2016 and June 2017. Results: Nurses perceive that doctors continue to treat for too long (79% ranked as a large barrier); families have unrealistic expectations about a patient’s prognosis (73%); junior doctors are unwilling to alter the decision of senior doctors (67%); doctors do not adequately explain the dying process (66%); and doctors have inadequate training in end-of-life care (66%). Nurses indicated that doctors reducing the length of active treatment and families having a more realistic expectation about life-expectancy would lead to the greatest improvement in end-oflife care in hospitals. Discussion: In this study of nurses working in a wide range of acute care settings across rural and metropolitan locations, substantial barriers to the provision of high-quality end-of-life care were perceived across all facets of healthcare provision. Important barriers included the continuation of potentially futile treatment, inadequacy of symptom control, and poor communication between doctors, patients and their families. Conclusion: Nurses perceive a range of patient; family; provider; and health system-related challenges to the provision of optimal end-of-life care in hospital. Findings highlight potential areas for improvement as part of a coordinated approach to optimising the provision of end-of-life care in hospitals. Future goals should include larger-scale, longitudinal studies across various states and territories to inform the development of interventions that can help to address the identified gaps in service provision. Implications for research, policy, and practice: This study has highlighted the need to involve all stakeholders when designing interventions to improve end-of-life care. Nurses can provide valuable insight into the factors that can make the greatest impact in improving care provision. It suggests that the provision of high-quality end-of life care in hospitals is complex, and that there is substantial overlap between items nurses perceive to be barriers in each of the five domains of care provision. To achieve sustainable improvement in the quality of end-of-life care provided in hospitals, a multi-factorial, and collegial, approach to designing interventions will be needed. What is already known about the topic? End-of-life care is increasingly being provided in hospital settings. Nurses are an important source of information and support for dying patients and their families. Few studies have explored nurses’ perceptions of the barriers to the provision of high-quality end-of life care across all domains of healthcare provision. What this paper adds: Important barriers include continuation of potentially futile treatment, adequacy of symptom control, and poor communication between doctors, patients, and their families. Findings can support the design of more effective intervention strategies to mitigate identified barriers and achieve improvements in the quality of end-of-life care delivered in hospital.

High-Intensity End-of-Life Care Among Patients With GI Cancer in Puerto Rico: A Population-Based Study.

PURPOSE:High-intensity care with undue suffering among patients with cancer at the end of life (EoL) is associated with poor quality of life. We examined the pattern and predictors of high-intensity care among patients with GI cancer in Puerto Rico.METHODS:This population-based study of data from the Puerto Rico Central Cancer Registry-Health Insurance Linkage Database examined patients with GI cancer who died between 2009 and 2017. EoL care intensity indicators include the following services in the last month before death: emergency room (ER) visits, hospitalizations, intensive care unit (ICU) admissions, life-extending procedures, death in an acute care setting, and the use of chemotherapy in the last 14 days. We used logistic regression models to examine factors associated with EoL care.RESULTS:Four thousand six hundred twenty-nine patients with GI cancer were included in the analysis. We found that 11.0% of patients received chemotherapy, 17.3% had > 1 hospitalization, 9.3% were in the ICU, 18.0% had > 1 ER visit, 39.3% died in an acute care setting, and 8.6% received life-extending procedures. A compound indicator of the aggressiveness of care showed that 54.5% of patients had at least one of the selected aggressive indicators. The multivariable model showed that female patients, patients ≥ 60 years of age, patients enrolled in Medicaid, patients dually eligible for both Medicare and Medicaid, and patients who survived > 1 year were less likely to receive aggressive EoL care.CONCLUSION:Our findings support the urgent need to improve EoL care in Puerto Rico. Further studies are warranted to fully understand EoL care in patients with cancer in Puerto Rico.