At the end of life, hospice patients frequently rely on surrogate decision makers (SDMs) for healthcare decisions, which creates anxiety among SDMs. This project evaluated whether an educational intervention to create a plan of care for hospice patients would reduce anxiety among SDMs. Before the intervention, immediately after the intervention, and 2 weeks following the intervention SDM anxiety was measured with the Geriatric Anxiety Scale, State Trait Anxiety Inventory-State Anxiety Scale, and one question about decision-making anxiety. Twelve patients (80±14.7 years) and 18 SDMs (60±12.9 years) completed the intervention. Immediately after the intervention SDMs showed a significant decrease (P=0.003) in anxiety. When anxiety was measured 2 weeks post-intervention, anxiety had increased again, and was no longer significantly different from pre-intervention levels. This project demonstrated that an educational intervention in the hospice setting can be effective in creating a short-term decrease to SDM anxiety levels.
Background: The hospice market has changed substantially, shifting from predominately not-for-profit independent entities to for-profit national chains. Little is known about how hospice organizational characteristics are associated with quality of hospice care.
Objective: To examine the association between hospice characteristics and care processes and performance on measures of hospice care quality.
Design: Logistic regression models assessed the association between hospice characteristics and processes and hospices being in the top quartile of quality measure performance.
Setting/Subjects: U.S. hospices with publicly reported measure scores in 2015-2017.
Measurements: Summaries of hospice-level performance on Consumer Assessment of Healthcare Providers and Systems (CAHPS) Hospice Survey measures (including communication, timely care, symptom management, emotional and spiritual support, respect, training families, overall rating, and willingness to recommend) and Hospice Item Set (HIS) measures (including pain screening and assessment, dyspnea screening and treatment, bowel regimen for patients on opioids, discussion of treatment preferences, and beliefs/values addressed).
Results: Of the 2746 hospices that met public reporting requirements, 5.6% were in the top quartile of both CAHPS and HIS performance. Characteristics associated with being in the top quartile for CAHPS included being a nonprofit and nonchain or government hospice, smaller size (<200 patients per year), and serving a rural area. Characteristics associated with being in the top quartile for HIS included being in a for-profit chain, larger size (91+ patients per year), and having <40% of patients in a nursing home. Providing professional staff visits in the last two days of life to a higher proportion of patients was associated with hospices being in the top quartile of HIS and in the top quartile of CAHPS.
Conclusions: Hospice characteristics associated with strong performance on HIS measures differ from those associated with strong performance on CAHPS measures. Providing professional staff visits in the last two days of life is associated with high performance on both quality domains.
Background: More than 2.5 million older Americans die each year. Place of residence in which dying patients receive care plays a crucial role in the quality of end-of-life (EOL) care.
Objective: This study aimed to compare proxies' overall rating and ratings for 13 indicators across five major domains of EOL care by place of residence in the last month of decedents' lives.
Design: We used data from the National Health and Aging Trends Study, a nationally representative study of Medicare beneficiaries at age 65 years and older in the United States.
Setting/Subjects: Analyses included proxies (N = 1336) of Medicare beneficiaries who passed away between 2013 and 2016. Proxies were categorized into four groups, depending on place of residence in the last month of life and the involvement of hospice.
Measurements: Quality of EOL care was assessed using questions modeled after quality of EOL care instruments. We adjusted for demographic data of decedents and proxies.
Results: Hospice recipients, regardless of setting, were more likely to experience pain and talk about religion in the last month of life; families of patients without hospice in residential care settings were more likely to report not being kept informed; proxies of patients living in private residences with hospice care reported higher overall ratings. Among hospice recipients, those living in private residences were more likely to be treated with respect.
Conclusions: Disparities exist across settings and in overall ratings for quality of EOL domains—particularly, the subdomains of symptom management, decision making, and spiritual needs.
BACKGROUND: Infections are common occurrences at end of life that are associated with high rates of morbidity and mortality among frail elderly individuals. The problem of infections in nursing homes has led to a subsequent overuse and misuse of antibiotics in this already-frail population. Improving palliative care in nursing homes has been proposed as a key strategy to reduce the use of antibiotics.
AIM: The aim of this study was to describe the current status of how nursing homes integrates palliative care and infection management at end of life across the nation.
DESIGN: This is a cross-sectional survey of nationally representative US nursing homes.
SETTING/PARTICIPANTS: Between November 2017 and October 2018, a survey was conducted with a nationally representative random sample of nursing homes and 892 surveys were completed (49% response rate). The weighted study sample represented 15,381 nursing homes across the nation.
RESULTS: Most nursing homes engaged in care plan documentation on what is important to residents (90.43%) and discussed spiritual needs of terminally ill residents (89.50%). In the event of aspiration pneumonia in terminally ill residents, 59.43% of nursing homes responded that resident would be transferred to the hospital. In suspected urinary tract infection among terminally ill residents, 66.62% of nursing homes responded that the resident will be treated with antibiotics.
CONCLUSION: The study found wide variations in nursing home palliative care practices, particularly for timing of end-of-life care discussions, and suboptimal care reported for antibiotic usage. Further education for nursing home staff on appropriate antibiotic usage and best practices to integrate infection management in palliative care at the end of life is needed.
BACKGROUND/OBJECTIVES: A patient-directed, online program (PREPARE for Your Care [PREPARE]; prepareforyourcare.org) has been shown to increase advance care planning (ACP) documentation. However, the mechanisms underlying PREPARE are unknown. Our objectives were to compare the efficacy of PREPARE plus an easy-to-read advance directive (AD) vs an AD alone to increase active patient participation in ACP discussions during clinic visits and to examine effects of active patient participation on ACP documentation.
DESIGN: Audio recordings of postintervention primary care visits from two randomized trials (2013-2016).
SETTING: Seven primary care clinics at a veterans affair and safety-net hospital in San Francisco, CA.
PARTICIPANTS: English- and Spanis-speaking adults, aged 55 years and older, with two or more chronic/serious conditions.
INTERVENTION: PREPARE plus an easy-to-read AD or an AD alone.
MEASUREMENTS: The primary outcome was the number of active patient participation utterances about ACP (eg, asking questions, stating preferences) measured by the validated Active Patient Participation Coding Scheme. We examined differences in utterances by study arm using mixed effects negative binomial models and utterances as a mediator of PREPARE's effect on documentation using adjusted logistic regression. Models were adjusted for health literacy, prior care planning, and clinician.
RESULTS: Among 393 participants, the mean (SD) age was 66 (8.1) years, 120 (30.5%) had limited health literacy, and 99 (25.2%) were Spanish speaking. PREPARE plus the AD resulted in 41% more active patient participation in ACP discussions compared with the AD alone (mean [SD] = 10.1 [16.8] vs 6.6 [13.4] utterances; incidence rate ratio = 1.41; 95% confidence interval = 1.00-1.98). For every additional utterance, participants had 15% higher odds of ACP documentation, and active patient participation accounted for 16% of PREPARE's effect on documentation.
CONCLUSIONS: The PREPARE program and easy-to-read AD empowered patients to actively participate in ACP discussions during clinical visits more than the AD alone. Increased activation was associated with increased ACP documentation. Therefore, PREPARE may mitigate barriers to ACP among English- and Spanish-speaking older adults.
TRIAL REGISTRATION: ClinicalTrials.gov identifiers: “Improving Advance Care Planning by Preparing Diverse Seniors for Decision Making (PREPARE)” NCT01990235 and “Preparing Spanish-Speaking Older Adults for Advance Care Planning and Medical Decision Making (PREPARE)” NCT02072941.
BACKGROUND: Despite recent growth in palliative care programs palliative care remains underutilized. Studies suggest that patients and providers commonly associate palliative care with end of life, often leading to misconceptions and late referrals.
OBJECTIVE: To characterize self-reported palliative care knowledge and misconceptions about palliative care among US adults and demographic, health, and social role factors associated with knowledge and misconceptions.
DESIGN: We conducted secondary data analysis of nationally representative, self-reported data from the 2018 Health Information National Trends Survey (HINTS) 5, Cycle 2. We examined associations between knowledge and misconceptions about palliative care together with demographics, health care access, health status, and social roles.
PARTICIPANTS: 3504 US adults. 2594 included in the first analysis after omitting missing cases; 683 who reported knowing about palliative care were included in the second analysis.
MAIN MEASURES: Palliative care knowledge was self-reported in response to: "How would you describe your level of knowledge about palliative care?" Level of misconceptions was based on a series of factual and attitudinal statements about palliative care.
KEY RESULTS: Among US adults, 28.8% report knowing about palliative care, but only 12.6% report knowing what palliative care is and hold no misconceptions. Those most likely to report knowing about palliative care are female, college-educated, higher income, have a primary health care provider, or are a caregiver. Among those who report knowing about palliative care, misconceptions were common: 44.4% automatically think of death, 38.0% equate palliative care with hospice, 17.8% believe you must stop other treatments, and 15.9% see palliative care as giving up.
CONCLUSIONS: US adults who have some knowledge of palliative care are most likely to confuse it with hospice but are less likely to see it as requiring forgoing treatment or as giving up. Primary care clinicians should be encouraged to communicate about palliative care with patients.
This study examines the impact of the level of religious observance on the attitudes toward end-of-life (EOL) decisions and euthanasia of Jews in Israel-where euthanasia is illegal-as compared to Jews living in the USA, in the states where euthanasia is legal. A self-reporting questionnaire on religiosity and personal beliefs and attitudes regarding EOL care and euthanasia was distributed, using a convenience sample of 271 participants from Israel and the USA. Findings show that significant differences were found in attitudes between Jews of different levels of religious observance with respect to patient autonomy, right to die with dignity, and dying in familiar and supportive surroundings. The USA and Israeli Jews have similar knowledge regarding EOL care and expressed similar attitudes and perceptions toward the issues of authority of medical staff and religious figures and patient's autonomy. Findings indicate that the level of religious observance has more potency in shaping their attitudes and perceptions of EOL decisions than the state law. We conclude by discussing the implications of our findings with regard to multicultural health systems and providing practical recommendations.
OBJECTIVES: Continuation of aspirin for secondary prevention in persons with limited life expectancy (LLE) is controversial. We sought to determine the incidence and predictors of aspirin discontinuation in veterans with LLE and/or advanced dementia (LLE/AD) who were taking aspirin for secondary prevention at nursing home admission, stratified by whether their limited prognosis (LP) was explicitly documented at admission.
DESIGN: Retrospective cohort study using linked Veterans Affairs (VA) and Medicare clinical/administrative data and Minimum Data Set resident assessments.
SETTING: All VA nursing homes (referred to as community living centers [CLCs]) in the United States.
PARTICIPANTS: Older (=65 y) CLC residents with LLE/AD, admitted for 7 days or longer in fiscal years 2009 to 2015, who had a history of coronary artery disease and/or stroke/transient ischemic attack, and used aspirin within the first week of CLC admission (n = 13 844).
MEASUREMENTS: The primary dependent variable was aspirin discontinuation within the first 90 days after CLC admission, defined as 14 consecutive days of no aspirin receipt. Independent variables included an indicator for explicit documentation of LP, sociodemographics, environment of care characteristics, cardiovascular risk factors, bleeding risk factors, individual markers of poor prognosis (eg, cancer, weight loss), and facility characteristics. Fine and Gray subdistribution hazard models with death as a competing risk were used to assess predictors of discontinuation.
RESULTS: Cumulative incidence of aspirin discontinuation was 27% (95% confidence interval [CI] = 26%-28%) in the full sample, 34% (95% CI = 33%-36%) in residents with explicit documentation of LP, and 24% (95% CI = 23%-25%) in residents with no such documentation. The associations of independent variables with aspirin discontinuation differed in residents with vs without explicit LP documentation at admission.
CONCLUSION: just over one-quarter of patients discontinued aspirin, possibly reflecting the unclear role of aspirin in end of life among prescribers. Future research should compare outcomes of aspirin deprescribing in this population.
OBJECTIVES; To evaluate the prevalence and factors associated with statin pharmacotherapy in long-stay nursing home residents with life-limiting illness.
SETTING: US Medicare- and Medicaid-certified nursing home facilities.
PARTICIPANTS: Long-stay nursing home resident Medicare fee-for-service beneficiaries aged 65 years or older with life-limiting illness (n = 424 212).
MEASUREMENTS: Prevalent statin use was estimated as any low-moderate intensity (daily dose low-density lipoprotein-cholesterol [LDL-C] reduction <30%-50%) and high-intensity (daily dose LDL-C reduction >50%) use via Medicare Part D claims for a prescription supply on September 30, 2016, with a 90-day look-back period. Life-limiting illness was operationally defined to capture those near the end of life using evidence-based criteria to identify progressive terminal conditions or limited prognoses (<6 mo). Poisson models provided estimates of adjusted prevalence ratios and 95% confidence intervals for resident factors.
RESULTS: A total of 34% of residents with life-limiting illness were prescribed statins (65--75 y = 44.0%, high intensity = 11.1%; >75 y = 31.1%, high intensity = 5.4%). Prevalence of statins varied by life-limiting illness definition. Of those with a prognosis of less than 6 months, 23% of the 65 to 75 and 12% of the older than 75 age groups were on statins. Factors positively associated with statin use included minority race or ethnicity, use of more than five concurrent medications, and atherosclerotic cardiovascular disease or risk factors.
CONCLUSION: Despite having a life-limiting illness, more than one-third of clinically compromised long-stay nursing home residents remain on statins. Although recent national guidelines have expanded indications for statins, the benefit of continued therapy in an advanced age population near the end of life is questionable. Efforts to deprescribe statins in the nursing home setting may be warranted.
BACKGROUND: The use of Do-Not-Resuscitate (DNR) orders has increased but many are placed late in the dying process. This study is to determine the association between the timing of DNR order placement in the intensive care unit (ICU) and nurses' perceptions of patients' distress and quality of death.
METHODS: 200 ICU patients and the nurses (n = 83) who took care of them during their last week of life were enrolled from the medical ICU and cardiac care unit of New York Presbyterian Hospital/Weill Cornell Medicine in Manhattan and the surgical ICU at the Brigham and Women's Hospital in Boston. Nurses were interviewed about their perceptions of the patients' quality of death using validated measures. Patients were divided into 3 groups-no DNR, early DNR, late DNR placement during the patient's final ICU stay. Logistic regression analyses modeled perceived patient quality of life as a function of timing of DNR order placement. Patient's comorbidities, length of ICU stay, and procedures were also included in the model.
RESULTS: 59 patients (29.5%) had a DNR placed within 48 hours of ICU admission (early DNR), 110 (55%) placed after 48 hours of ICU admission (late DNR), and 31 (15.5%) had no DNR order placed. Compared to patients without DNR orders, those with an early but not late DNR order placement had significantly fewer non-beneficial procedures and lower odds of being rated by nurses as not being at peace (Adjusted Odds Ratio namely AOR = 0.30; [CI = 0.09-0.94]), and experiencing worst possible death (AOR = 0.31; [CI = 0.1-0.94]) before controlling for procedures; and consistent significance in severe suffering (AOR = 0.34; [CI = 0.12-0.96]), and experiencing a severe loss of dignity (AOR = 0.33; [CI = 0.12-0.94]), controlling for non-beneficial procedures.
CONCLUSIONS: Placement of DNR orders within the first 48 hours of the terminal ICU admission was associated with fewer non-beneficial procedures and less perceived suffering and loss of dignity, lower odds of being not at peace and of having the worst possible death.
Background: The location of death is an important component of end-of-life care. However, contemporary trends in the location of death for cardiovascular deaths related to heart failure (CV-HF) and comparison to cancer deaths have not been fully examined.
Methods: We analyzed data from the Centers for Disease Control and Prevention’s Control Wide-Ranging Online Data for Epidemiologic Research database between 2003 and 2017 to identify location of death for CV-HF and cancer deaths. The proportions of deaths that occurred in a hospice facility, home, and medical facility were tested for trends using linear regression. Odds ratios were calculated to determine the odds of death occurring in a hospice facility or home (versus a medical facility) stratified by sex and race.
Results: We identified 2 940 920 CV-HF and 8 852 066 cancer deaths. Increases were noted in the proportion of CV-HF deaths in hospice facilities (0.2% to 8.2%; Ptrend<0.001) and at home (20.6% to 30.7%; Ptrend<0.001), whereas decreases were noted in the proportion of deaths in medical facilities (44.5% to 31.0%; Ptrend<0.001) and nursing homes (30.8% to 25.7%; Ptrend<0.001). The odds of dying in a hospice facility (odds ratio, 1.79 [1.75–1.82]) or at home (odds ratio, 1.55 [1.53–1.56]) versus a medical facility was higher for whites versus blacks. The rate of increase in proportion of deaths in hospice facilities was higher for cancer deaths (ß=1.05 [95% CI, 0.97–1.12]) than for CV-HF deaths (ß=0.61 [95% CI, 0.58–0.64]).
Conclusions: The proportion of CV-HF deaths occurring in hospice facilities is increasing but remains low. Disparities are noted whereby whites are more likely to die in hospice facilities or at home versus medical facilities compared with blacks. More research is needed to determine end-of-life preferences for patients with HF and identify the basis for these differences in location of death.
Objectives: To investigate racial differences in implementation of 11 evidence-based cancer pain management strategies in a matched sample of patients in hospice.
Sample & Setting: 32 African American and 32 Caucasian American older adults (aged 65 years or older) with cancer pain receiving hospice care in the midwestern United States.
Methods & Variables: Matched cohort secondary data analysis of postintervention data in a cluster randomized controlled trial was used. Main outcomes are the summative and individual Cancer Pain Practice Index scores.
Results: There were few statistically significant or clinically meaningful differences in implementation of individual best practices for pain management by race. Assessment of primary pain characteristics and management of opioid-induced constipation with a bowel regimen was significantly lower in African Americans than in Caucasian Americans.
Implications for Nursing: African American older adults receiving hospice care at the end of life received pain management that was, overall, comparable to matched Caucasian American older adults. Hospice and oncology nurses play a critical role in effective pain management and should continue to implement evidence-based guidelines for pain management into daily practice. Diffusing the hospice model and principles of pain and symptom management into other settings and specialty care areas may reduce widespread pain disparities.
CONTEXT: Opportunities for the use of palliative care services are missed in African-American communities, despite Level I evidence demonstrating their benefits.
OBJECTIVE: Single-institution, stakeholder-engaged study to design an intervention to increase palliative care use in African-American communities.
METHODS: Two-phased qualitative research design guided by the Behavior Change Wheel (BCW) and Theoretical Domains Framework (TDF) models. In phase one, focus group sessions were conducted to identify barriers and facilitators of palliative care use, and the viability of community health workers (CHWs) as a solution. After applying the BCW and TDF to data gathered from phase one, phase two consisted of a stakeholder meeting to select intervention content and prioritize modes of delivery.
RESULTS: A total of 15 stakeholders participated in our study. Target behaviors identified were for patients to gain knowledge about benefits of palliative care, physicians to begin palliative care discussions earlier in treatment, and to improve patient-physician interpersonal communication. The intervention was designed to improve patient capability, physician capability, patient motivation, physician motivation, and increase patient opportunities to use palliative care services. Strategies to change patient and physician behaviors were all facilitated by CHWs and included: creation and dissemination of brochures about palliative care to patients, empowerment and activation of patients to initiate goals of care discussions, outreach to community churches, and expanding patient social support.
CONCLUSION: Use of a theory-based approach to facilitate the implementation of a multi-component strategy provided a comprehensive means of identifying relevant barriers and enablers of CHWs as an agent to increase palliative care use in African-American communities.
BACKGROUND: Decisions to limit use of life-sustaining treatment occur frequently during hospitalizations, and portable medical orders (also known as Portable Orders for Life-Sustaining Treatment (POLST)) can ensure that patient preferences regarding resuscitation are followed after discharge.
OBJECTIVE: To determine the frequency and predictors of completion of POLST orders for adults with change during hospitalization in resuscitation status to Do Not Resuscitate.
DESIGN: Retrospective observational study at level 1 trauma and academic hospital in Minneapolis, MN, USA PARTICIPANTS: All adults (18 years or older) hospitalized between June 2017 and June 2018, inclusive, with code status changed from Full Code to DNR. For patients with more than one hospitalization during this study interval, only the first hospitalization when DNR was ordered was included in this analysis.
MAIN MEASURES: Completion of POLST orders by time of discharge.
KEY RESULTS: From 2017 to 2018, 160 adults had a change from Full Code to DNR status during index hospitalization and survived to discharge, most (156 patients) to a nursing care facility. Of these, only 50 (31.2%) had POLST orders provided at discharge. Documentation of informed refusal of intubation in addition to DNR status was a significant predictor (OR 4.1, 99% CI 1.5-11.0) of POLST orders on discharge, as was admission to a medical service compared with non-medical service (OR 3.2, 99% CI 1.1-12.2). Palliative care consultants, rather than primary providers on the hospital services, completed most POLST orders.
CONCLUSIONS: Despite primary hospital providers engaging in conversations regarding resuscitation and entering DNR orders during hospitalization, the majority of patients in our study discharged to other care facilities without POLST orders. POLST orders are a simple palliative care tool available to primary hospital providers to help ensure continuity of plan of care at discharge for patients who wish to avoid invasive life-sustaining treatments and/or cardiopulmonary resuscitation.
BACKGROUND: This study examined the changes in outpatient palliative care services at US cancer centers over the past decade.
METHODS: Between April and August 2018, all National Cancer Institute (NCI)-designated cancer centers and a random sample of 1252 non-NCI-designated cancer centers were surveyed. Two surveys used previously in a 2009 national study were sent to each institution: a 22-question cancer center executive survey regarding palliative care infrastructure and attitudes toward palliative care and an 82-question palliative care program leader survey regarding detailed palliative care structures and processes. Survey findings from 2018 were compared with 2009 data from 101 cancer center executives and 96 palliative care program leaders.
RESULTS: The overall response rate was 69% (140 of 203) for the cancer center executive survey and 75% (123 of 164) for the palliative care program leader survey. Among NCI-designated cancer centers, a significant increase in outpatient palliative care clinics was observed between 2009 and 2018 (59% vs 95%; odds ratio, 12.3; 95% confidence interval, 3.2-48.2; P < .001) with no significant changes in inpatient consultation teams (92% vs 90%; P = .71), palliative care units (PCUs; 26% vs 40%; P = .17), or institution-operated hospices (31% vs 18%; P = .14). Among non-NCI-designated cancer centers, there was no significant increase in outpatient palliative care clinics (22% vs 40%; P = .07), inpatient consultation teams (56% vs 68%; P = .27), PCUs (20% vs 18%; P = .76), or institution-operated hospices (42% vs 23%; P = .05). The median interval from outpatient palliative care referral to death increased significantly, particularly for NCI-designated cancer centers (90 vs 180 days; P = 0.01).
CONCLUSIONS: Despite significant growth in outpatient palliative care clinics, there remain opportunities for improvement in the structures and processes of palliative care programs.
Background: Care costs rise towards the end of life. International comparison of service use, costs and care experiences can inform quality and improve access.
Aim: The aim of this study was to compare health and social care costs, quality and their drivers in the last 3 months of life for older adults across countries. Null hypothesis: no difference between countries.
Design: Mortality follow-back survey. Costs were calculated from carers’ reported service use and unit costs.
Setting: Palliative care services in England (London), Ireland (Dublin) and the United States (New York, San Francisco).
Participants: Informal carers of decedents who had received palliative care participated in the study.
Results: A total of 767 questionnaires were returned: 245 in England, 282 in Ireland and 240 in the United States. Mean care costs per person with cancer/non-cancer were US$37,250/US$37,376 (the United States), US$29,065/US$29,411 (Ireland), US$15,347/US$16,631 (England) and differed significantly (F = 25.79/14.27, p < 0.000). Cost distributions differed and were most homogeneous in England. In all countries, hospital care accounted for > 80% of total care costs; community care 6%–16%, palliative care 1%–15%; 10% of decedents used ~30% of total care costs. Being a high-cost user was associated with older age (>80 years), facing financial difficulties and poor experiences of home care, but not with having cancer or multimorbidity. Palliative care services consistently had the highest satisfaction.
Conclusion: Poverty and poor home care drove high costs, suggesting that improving community palliative care may improve care value, especially as palliative care expenditure was low. Major diagnostic variables were not cost drivers. Care costs in the United States were high and highly variable, suggesting that high-cost low-value care may be prevalent.
BACKGROUND: Associations of demographic factors with elective dialysis withdrawal and setting of death, patterns of illness trajectories preceding death, and how illness trajectories, particularly worsening putative disability, are associated with elective withdrawal are poorly understood.
METHODS: Using United States Renal Data System data, we performed a case-control analysis of hemodialysis patients who died in 2010-2015. A disability proxy score characterized disability; logistic regression identified characteristics associated with death from withdrawal and with death setting; and group-based trajectory models characterized the trajectory of disability in the months preceding death.
RESULTS: We identified 14,571 (9.2%) patients who withdrew and 144,305 (90.8%) who died of a non-withdrawal cause. Women were more likely than men to withdraw (OR 1.19, 95% CI 1.15-1.24). The most rural patients were more likely to withdraw than the most urban (OR 1.37, 95% CI 1.25-1.50). Medicaid coverage (a marker for impoverishment) was associated with less withdrawal (OR 0.90, 95% CI 0.86-0.94). Disability proxy score was strongly related to withdrawal: the OR for patients in the highest score category was 31.16 (95% CI 28.40-34.20) versus those with a score of 0. Women and whites (vs. blacks) were overrepresented in the worst, versus better, proxy disability score trajectory. In-hospital death and death in the intensive care unit were more common in women and minorities than in men and whites, but less common in the most rural patients.
CONCLUSIONS: Important differences separate patients who electively withdraw from those who die of non-withdrawal causes. Worsening disability, in particular, may be a marker for withdrawal.
BACKGROUND: Opioid overdoses have reached epidemic levels in the United States and have clustered in Northeastern and "Rust Belt" states. Five Factor Model (FFM) personality traits also vary at the state level, with anger-prone traits clustered in the Northeast region. This study tested the hypothesis that state-level anger proneness would be associated with a greater increase in rates of opioid overdose death.
METHODS: This was a secondary analysis of state-level data on FFM traits, opioid overdose deaths, and other classes of preventable death. Robust mixed models tested whether change in rates of opioid overdose death from 2008 to 2016 was moderated by state-level anger proneness.
RESULTS: State-level anger proneness was significantly associated with greater increases in rates of opioid overdose deaths (B = 1.01, standard error = 0.19, P < .001, 95% confidence interval: 0.63-1.39). The slope of increase in opioid overdose death rates was 380% greater in anger-prone states and held after adjustment for potential confounders such as state-level prevalence of major depressive disorder, number of mental health facilities, and historical patterns of manufacturing decline. A similar pattern was observed between state-level anger proneness and benzodiazepine overdose deaths but was not significant for the latter after adjustment for potential confounders.
CONCLUSION: These findings suggest that states characterized as more anger prone have experienced greater increases in opioid overdose deaths.
Rationale & Objective: Older patients with advanced chronic kidney disease (CKD) utilize intensive care at the end-of-life and die in a hospital more frequently than patients with cancer or heart disease. Advance care planning (ACP) can help align treatment with patient preferences and improve patient-centered care, yet ACP quality and experiences among older patients with CKD and their care partners remain incompletely understood, particularly among the non–dialysis-dependent population.
Study Design: n-person, interviewer-administered surveys of patients 70 years and older with non–dialysis-dependent CKD stage 4 or 5 and their self-identified care partners.
Setting & Participants: 42 participants (31 patients, 11 care partners) at two clinical sites in Greater Boston
Outcomes: Completion of advance directives, and self-reported perceptions, preferences, and experiences of ACP.
Analytical Approach: Descriptive analysis of patient and care partner surveys. McNemar’s test analysis to compare patient and care partner responses.
Results: Most patients had written advance directives (64%) and surrogate decision makers (81%). Although patients reported positive perceptions and high trust in their clinicians’ judgment, few (16%) had actually discussed preferences for life-sustaining treatment with their nephrologists. Few ACP discussions included components reflective of high-quality ACP: 16% of patients had been asked about their values concerning end-of-life care and 7% had discussed issues of decision-making capacity and consent to care should their health decline. When presented with two hypothetical scenarios (stroke/heart attack, or dementia), nearly all patients and care partners reported a preference for comfort care over delaying death. Care partners were more likely than patients to report that they had experienced discussion components reflective of high-quality ACP with the clinical team.
Limitations: Single metropolitan area; most patients did not identify a care partner, non-response bias and small sample size.
Conclusions: Patients often believed that their clinicians understood their end-of-life wishes despite not having engaged in ACP conversations that would make those wishes known. Improving clinical ACP communication may result in end-of-life treatment that better aligns with patient goals.
Objective: Evaluate trends in place of death for patients with head and neck cancers (HNC) in the U.S. from 1999 to 2017 based on the CDC WONDER (Wide-ranging Online Data for Epidemiologic Research) database.
Materials/methods: Using patient-level data from 2015 and aggregate data from 1999 to 2017, multivariable logistic regression analyses (MLR) were performed to evaluate for disparities in place of death.
Results: We obtained aggregate data for 101,963 people who died of HNC between 1999 and 2017 (25.9% oral cavity, 24.6% oropharynx/pharynx, 0.4% nasopharynx, and 49.1% larynx/hypopharynx). Most were Caucasian (92.7%) and male (87.0%). Deaths at home or hospice increased over the study period (R2 = 0.96, p < 0.05) from 29.2% in 1999 to 61.2% in 2017. On MLR of patient-level data from 2015, those who were single (ref), ages 85+ (OR 0.78; 95% CI: 0.68, 0.90), African American (OR 0.73; 95% CI: 0.65, 0.82), or Asian/Pacific Islanders (OR 0.66; 95% CI: 0.54, 0.81) were less likely to die at home or hospice. On MLR of the aggregate data (1999–2017), those who were female (OR 0.87; 95% CI: 0.83, 0.91) or ages 75–84 (OR 0.79; 95% CI: 0.76, 0.82) were also less likely to die at home or hospice. In both analyses, those who died from larynx/hypopharynx cancers were less likely to die at home or hospice.
Conclusions: HNC-related deaths at home or hospice increased between 1999 and 2017. Those who were single, female, African American, Asian/Pacific Islander, older (ages 75+), or those with larynx/hypopharynx cancers were less likely to die at home or hospice.