Differences In End-of-life Care Research Articles

Impact of race on end-of-life care among patients with esophageal cancer.

337 Background: Esophageal cancer is an aggressive malignancy with rising incidence globally. Patients with advanced esophageal cancer suffer from a heavy burden of a wide array of symptoms including dysphagia and cachexia/anorexia, necessitating the need for focused symptom management and palliative care. Studies focused on other cancer types have shown that Black patients are more likely to receive aggressive care at end-of-life (EOL) and suffer from a decline in quality of life. We sought to investigate racial differences in EOL care among patients with advanced esophageal cancer in the US. Methods: The National Inpatient Sample (NIS) was queried to identify all hospitalizations with esophageal cancer utilizing ICD-10 codes C15x from 2016 to 2020. Hospitalizations of White and Black patients with documented inpatient mortality events were then extracted. Demographic and clinical data were analyzed using chi squared tests, independent sample t-tests, and binary logistic regression (adjusted for age, gender, and Charlson comorbidity index or CCI). Adjusted Odds ratios (aOR) are presented with 95% Confidence intervals (CI). Results: A total of 15,130 patients with esophageal cancer were included, of which 13,345 (88.2%) were White and 1785 (11.8%) were Black. Hospitalizations with White patients recorded higher age, more males, and higher comorbidities per CCI. Hospitalizations with Black patients had longer lengths of stay on average, higher total hospital charges, and significantly less likely to have a Do Not Resuscitate (DNR) code status (aOR 0.81, 0.74-0.9 95% CI). Rates of inpatient palliative care consultation at EOL were significantly lower among Black patients (aOR=0.53, 0.48-0.58 95% CI). Black patients were more likely to receive aggressive intervention at EOL demonstrated by rates of blood transfusion (aOR 1.9, 1.6-2.1 95% CI), mechanical ventilation (aOR 1.7, 1.5-1.8 95% CI), and vasopressor usage (aOR 1.4, 1.2-1.6 95% CI). Conclusions: We present a large retrospective analysis demonstrating significant racial disparities in EOL care amongst hospitalized patients with esophageal cancer. Black patients had longer lengths of stay, lower rates of palliative care consultation and DNR code status, and higher rates of aggressive interventions at EOL. These findings may have implications for improving health care decision making for EOL care amongst minority patients with esophageal cancer. WhiteN=13345 BlackN=1785 p-value Age (in years) 68.24±10.67 65.12±10.36 <.001 CCI 9.4±3.3 8.6±3.9 <.001 Mean length of stay (days) 7.5±11.3 10.4±22.8 <.001 Total Cost (In thousands of dollars) 108.6±231.0 141.9±388.5 <.001 Palliative Adjusted OR 60.9% 45.1% .53 (.48 - .58) <.001 DNR Adjusted OR 63.8% 58.0% .81 (.74 - .90) <.001 Blood transfusion Adjusted OR 13.0% 23.0% 1.9 (1.6-2.1) <.001 Mechanical ventilation Adjusted OR 31.4% 45.9% 1.7 (1.5-1.8) <.001 Vasopressor Adjusted OR 7.8% 10.6% 1.4 (1.2-1.6) <.001

European Society of Intensive Care Medicine guidelines on end of life and palliative care in the intensive care unit.

The European Society of Intensive Care Medicine (ESICM) has developed evidence-based recommendations and expert opinions about end-of-life (EoL) and palliative care for critically ill adults to optimize patient-centered care, improving outcomes of relatives, and supporting intensive care unit (ICU) staff in delivering compassionate and effective EoL and palliative care. An international multi-disciplinary panel of clinical experts, a methodologist, and representatives of patients and families examined key domains, including variability across countries, decision-making, palliative-care integration, communication, family-centered care, and conflict management. Eight evidence-based recommendations (6 of low level of evidence and 2 of high level of evidence) and 19 expert opinions were presented. EoL legislation and the importance of respecting the autonomy and preferences of patients were given close attention. Differences in EoL care depending on country income and healthcare provision were considered. Structured EoL decision-making strategies are recommended to improve outcomes of patients and relatives, as well as staff satisfaction and mental health. Early integration of palliative care and the use of standardized tools for symptom assessment are suggested for patients at high risk of dying. Communication training for ICU staff and printed communication aids for families are advocated to improve outcomes and satisfaction. Methods for enhancing family-centeredness of care include structured family conferences and culturally sensitive interventions. Conflict-management protocols and strategies to prevent burnout among healthcare professionals are also considered. The work done to develop these guidelines highlights many areas requiring further research.

Differences in end-of-life care and outcomes in palliative consultation-eligible patients with and without do-not-resuscitate orders: A propensity score-matched study.

The primary objective of palliative care, not synonymous with end-of-life (EOL) care, is to align care plans with patient goals, regardless of whether these goals include the pursuit of invasive, life-sustaining procedures, or not. This study determines the differences in EOL care, resource utilization, and outcome in palliative care consultation-eligible emergency department patients with and without do-not-resuscitate (DNR) orders. This is a retrospective observational study. We consecutively enrolled all the acutely and critically ill emergency department patients eligible for palliative care consultation at the Taipei Veterans General Hospital, a 3000-bed tertiary hospital, from February 1 to July 31, 2018. The outcome measures included in-hospital mortality and EOL care of patients with and without DNR. A total of 396 patients were included: 159 with and 237 without DNR. Propensity score matching revealed that patients with DNR had significantly shorter duration of hospital stay (404.4 ± 344.4 hours vs 505.2 ± 498.1 hours; p = 0.037), higher in-hospital mortality (54.1% vs 34.6%; p < 0.001), and lower total hospital expenditure (191 239 ± 177 962 NTD vs 249 194 ± 305 629 NTD; p = 0.04). Among patients with DNR, there were fewer deaths in the intensive care unit (30.2% vs 37.0%), more deaths in the hospice ward (16.3% vs 7.4%), more critical discharge to home (9.3% vs 7.4%), more endotracheal removals (3.1% vs 0%; p = 0.024), and more narcotics use (32.7% vs 22.1%; p = 0.018). The palliative care consultation-eligible emergency department patients with DNR compared with those without DNR experienced worse outcomes, greater pain control, more endotracheal extubations, shorter duration of hospital stay, more critical discharge to home, more hospice referrals, and 23.3% reduction in total expenditure. There were fewer deaths in the ICU among them as well.

Cultural differences in end‐of‐life care planning for persons with dementia: Comparison of U.S. and Korean cases

AbstractBackgroundProviding good quality care at the end of life is important not only for cognitively‐intact patients but also for people who have dementia. In order to respect the patients’ preferences for end‐of‐life care (EOLC) among persons with dementia (PwD), it is critical to engage in advance care planning before PwDs lose cognitive functioning. However, even if health practitioners perceive such needs, they may be constrained by social and cultural factors in initiating conversations about EOLC. This study examined cultural differences in EOLC planning for PwDs using the case study method. We conducted in‐depth interviews with 7 social workers who work in South Korea, 2 Korean American social workers working with Korean‐American older adults in the US, and 3 American social workers who work in the community and hospice settings serving diverse populations. We asked about participants’ opinion about advance care planning(or EOLC) for PwDs, whether and how they engage in discussions on EOLC, obstacles in their efforts to engage in these discussions, suggestions for improving EOLC and decision making for PwDs. We conducted content analysis and extracted themes relevant to our research questions. Results show that social workers in Korea feel reluctant to engage in advance care planning for PwDs because older adults as well as their caregivers do not want to talk about death. Compared to social workers in Korea, social workers working in the Korean American communities in the US engage in EOLC planning with their clients more frequently, but they wait until they find opportunities to talk about EOLC, such as death of their client’s family of friends. On the other hand, social workers working in the non‐immigrant communities in the US perceived advance care planning as a way to ensure self‐determination and autonomy in EOLC decision making and offered opportunities to prepare for EOLC even when their clients did not bring up the issues. Implications for culturally sensitive practice and ways to improve awareness on the importance of EOLC planning in death‐avoiding cultures are discussed.

‘Nosce te ipsum’: An Italian national survey to explore choice's differences in End of Life (EoL) care between healthcare professionals and general public

BackgroundThe current debate regarding decision-making at the End-of-Life (EoL) is increasing remarkably and has spread all over the world. However, literature has paid little attention to describe choice's differences in EoL care between healthcare professionals and general public. ObjectivesThe aim of this study was to explore the difference between choices in EoL care made by healthcare professionals and those of the general public within the Italian context. Setting and participantsIn 2017, an Italian widespread survey was conducted using a snowball sampling. A total of 2038 participants completed the survey, 55.64% of which were the general public. ResultsThe main differences related to specific EoL choices made by healthcare professionals and the general public. In particular, healthcare professionals were more likely to avoid cardiopulmonary resuscitation and mechanical forms of breathing in terminal-stage conditions, and they were also more likely to be favorable towards the use of opioids to avoid suffering. Overall, healthcare professionals were also more likely to make a choice rather than express a ‘not sure’ answer. ConclusionThe higher percentage of participants in the general public group that chose ‘not sure’ highlighted the importance of addressing and enhancing people's self-awareness. More cross-national investigation should help to frame the understanding of the choice's differences in EoL care between healthcare professionals and general public.

A randomised controlled trial of an advance care planning intervention for patients with incurable cancer

BackgroundWe modified and evaluated an advance care planning (ACP) intervention, which had been shown to improve compliance with patient’s end of life (EoL) wishes, in a different patient population.MethodsPatients with incurable cancer, and a Family Member (FM), were randomised one-to-one to usual care or usual care plus an ACP intervention, between April 2014 and January 2017. Oncologists and participants were non-blinded. ACP was based on the Respecting Patient Choices model, with an offer to provide individualised ranges for typical, best-case and worst-case scenarios for survival time. Seven facilitators (two oncology nurses, two nurses and three allied health professionals) delivered the intervention within 2 weeks of study enrolment. The primary outcome measure, assessed by interviewing the FM 3 months after patient death, was the FM perception that the patient’s wishes were discussed, and met.ResultsSix hundred and sixty-five patients from seven Australian metropolitan oncology centres were referred for consideration by their oncologists, 444 (67%) met the study inclusion criteria and were approached by a study researcher. Two hundred and eight patients (47%) and their FM entered the trial as dyads. Fifty-three (46%) dyads in the ACP group and 63 (54%) dyads in the usual-care group had complete primary outcome data (p = 0.16). Seventy-nine patients and 53 FMs attended an ACP discussion. Mean length of discussion was 57 min. FMs from 23 (43%) dyads allocated to ACP and 21 (33%) dyads allocated usual care reported the patient’s EoL wishes were discussed and met (difference 10%, 95% CI: −2 to 8, p = 0.27). There were no differences in EoL care received, patient satisfaction with care; FM satisfaction with care or with death; or FM well being. Rates of palliative care referral were high in both groups (97% vs 96%).ConclusionsA formal ACP intervention did not increase the likelihood that EoL care was consistent with patients’ preferences.

Abstract 18891: Racial Differences in End-of-life Care Associated With Heart Failure Hospitalizations in the United States: A Population-based Analysis From 2011-2012

Background and objectives: Racial disparities in healthcare delivery constitute a major public health problem in the US. There are few studies evaluating the effect of race on utilization of end-of-life (EOL) procedures in HF hospitalizations in the US. Hypothesis: Utilization of EOL procedures differs significantly between racial-ethnic groups independent of socioeconomic status (SES) or probability of in-hospital death. Methods: We used the 2011-2012 Nationwide/National Inpatient Sample to identify primary HF hospitalizations. EOL procedures of interest were intubation, tracheostomy and prolonged mechanical ventilation, hemodialysis, cardiopulmonary resuscitation, gastrostomy, enteral or parenteral nutrition. Relevant ICD-9 codes were used. We used residential ZIP code as a proxy for SES. Multivariate logistic models were used to evaluate racial differences in EOL care while adjusting for SES and probability of in-hospital mortality. Results: 375,740 hospitalizations representing 1.8 million hospitalizations nationwide were included in the study. Mean age was 72.6 (SD 14.6) years and 50.1% were women. Overall 7.81% were intubated, 0.69% underwent tracheostomy, and 6.55% underwent hemodialysis, 0.55% underwent CPR, 0.22% had a gastrostomy and 0.45% received enteral or parenteral nutrition. Blacks, Hispanics, Asians or Pacific Islanders and Other races were more likely to receive EOL procedures compared to Whites after adjusting for SES and probability of in-hospital death. (Fig) Use of any EOL procedure was associated with higher age and sex adjusted odds of in-hospital mortality (OR 6.54, 6.09 - 7.04; p&lt;0.001) and average charges ($76,917 vs. 35,841, p&lt;0.001). Conclusions: Racial-ethnic minorities hospitalized for HF are significantly more likely to receive aggressive EOL care compared to Whites. The reasons for racial differences in utilization of EOL care in HF should be investigated in future studies.

Male-female patient differences in the association between end-of-life discussions and receipt of intensive care near death.

Patient gender plays a significant role in patient-physician communication, patients' understanding of illness, and the aggressiveness of end-of-life (EoL) care. However, little is known about the extent to which gender differences in the effects of EoL discussions on EoL care contribute to gender differences in EoL care. The current study was aimed at determining whether gender differences exist in the receipt of intensive care unit (ICU) care near death and in the association between EoL discussions and the receipt of EoL ICU care. This was a multisite, prospective cohort study of patients (n = 353) with metastatic cancers who were identified as terminally ill at study enrollment and were interviewed at a median of 4.1 months before their deaths. Postmortem chart reviews and caregiver interviews documented ICU stays in the last week of life. Patients who received ICU care at the EoL were more likely to be male than those who did not (73% vs 52%, P = .02). After adjustments for potential confounders, male patients reporting an EoL discussion were less likely to have an ICU stay in the last week of life than male patients with no EoL discussion (adjusted odds ratio, 0.26, 95% confidence interval, 0.07-0.91; P = .04). There was no association between EoL discussions and ICU stays near death among female patients. Men with advanced cancers are more likely than women to receive aggressive, nonbeneficial ICU care near death. Gender differences in the effects of EoL discussions on EoL care likely contribute to and may even explain gender differences in the receipt of ICU care in the last week of life.

Racial differences in the impact of financial hardship on the intensity of end-of-life cancer care.

6012 Background: Research suggests that Black cancer patients have higher end-of-life (EOL) medical costs than White patients; and that Black, compared with White, families are more likely to use all or most of their savings to pay for EOL care. Although Black cancer patients receive more intense EOL care than Whites, research has yet to determine the effect of financial hardship on receipt of intensive EOL care, and whether the effect varies by the patient’s race. Methods: Coping with Cancer (CwC) is a longitudinal, multi-site cohort study of advanced cancer patients and their informal caregivers recruited from September 2002-February 2008. CwC was designed to investigate Black/White differences in EOL care. The purpose of this analysis was to determine the association between baseline financial hardship and receipt of intensive EOL care in the last week of life (CwC deceased cohort N=342), and to identify racial differences in this association. Financial hardship was defined as whether the household had to use all or most of their savings due to the family member’s illness (response =yes/no). Intensive EOL care was defined as the receipt of ventilation or resuscitation in the last week of life assessed by medical record review and patient’s caregiver. Results: Patients reporting financial hardship had higher odds of receiving intensive EOL care (OR = 2.83, CI: 1.33, 6.05). After adjusting for socio-demographic characteristics the significant association remained (OR = 2.55, CI: 1.13, 5.81). Race-stratified fully adjusted models revealed no statistically significant association between financial hardship and intensive EOL care for Whites; however, for Blacks, those reporting financial hardship had over five times higher odds of receiving intensive EOL care (OR = 5.21, CI: 1.51, 17.99) compared to those not reporting financial hardship. Conclusions: Financial hardship was associated with greater likelihood of receiving intensive EOL care. The intensity of EOL care received by White patients was insensitive to financial hardship; in contrast Black patients reporting depletion of life savings for cancer care were much more likely to die receiving intensive EOL care than their non-financially strained counterparts.

Communication in End-Stage Cancer: Review of the Literature and Future Research

Concerns have been raised about the quality of life and health care received by cancer patients at the end of life (EOL). Many patients die with pain and other distressing symptoms inadequately controlled, receiving burdensome, aggressive care that worsens quality of life and limits patient exposure to palliative care, such as hospice. Patient–physician communication is likely a very important determinate of EOL care. Discussions of EOL with physicians are associated with an increased likelihood of the following (1) acknowledgment of terminal illness, (2) preferences for comfort care over life extension, and (3) receipt of less intensive, life-prolonging and more palliative EOL care; while this appears to hold for White patients, it is less clear for Black, advanced cancer patients. These results highlight the importance of communication in determining EOL cancer care and suggest that communication disparities may contribute to Black–White differences in EOL care. We review the pertinent literature and discuss areas for future research.

Health Care Costs in the Last Week of Life

Life-sustaining medical care of patients with advanced cancer at the end of life (EOL) is costly. Patient-physician discussions about EOL wishes are associated with lower rates of intensive interventions. Funded by the National Institute of Mental Health and the National Cancer Institute, Coping With Cancer is a longitudinal multi-institutional study of 627 patients with advanced cancer. Patients were interviewed at baseline and were followed up through death. Costs for intensive care unit and hospital stays, hospice care, and life-sustaining procedures (eg, mechanical ventilator use and resuscitation) received in the last week of life were aggregated. Generalized linear models were applied to test for cost differences in EOL care. Propensity score matching was used to reduce selection biases. Of 603 participants, 188 (31.2%) reported EOL discussions at baseline. After propensity score matching, the remaining 415 patients did not differ in sociodemographic characteristics, recruitment sites, illness acknowledgment, or treatment preferences. Further analyses, adjusted by quintiles of propensity scores and significant confounders, revealed that the mean (SE) aggregate costs of care (in 2008 US dollars) were $1876 ($177) for patients who reported EOL discussions compared with $2917 ($285) for patients who did not, a cost difference of $1041 (35.7% lower among patients who reported EOL discussions) (P =.002). Patients with higher costs had worse quality of death in their final week (Pearson production moment correlation partial r = -0.17, P =.006). Patients with advanced cancer who reported having EOL conversations with physicians had significantly lower health care costs in their final week of life. Higher costs were associated with worse quality of death.