Patient-reported distress as an early warning sign of unmet palliative care needs and increased healthcare utilization in patients with advanced cancer.

INTRODUCTION: Cancer patients' sources of distress are often unaddressed, and patient-reported distress data could be utilized to identify those with unmet and impending care needs. We explored the association between moderate/severe distress and healthcare utilization in a large sample of non-small cell lung cancer (NSCLC) and non-colorectal gastrointestinal cancer patients. METHODS AND MATERIALS: Adult patients treated between July 2013 and March 2019. Data from the NCCN Distress Thermometer (DT) and the accompanying "Problem List" were extracted from the EHR. A DT score of ≥ 4 indicates "actionable distress." Statistical analysis was performed using descriptive analysis for patient characteristics, clinical outcomes, and sources of distress. Generalized linear mixed models were fit to determine the relationship between distress and healthcare utilization (hospitalization, emergency department (ED) visit, or both). RESULTS: The ten most frequently reported problems were from the Physical and Emotional domains of the Problem List. Distress was mostly related to physical symptoms (pain, fatigue) and emotional issues (worry, fears, sadness, nervousness). Patients with actionable distress generally reported more problems across all their visits. Actionable distress was associated with higher odds of the composite outcome measure of hospitalization or visiting the ED, within both the next 3 months (OR = 1.37; 95% CI = 1.19, 1.58; p < 0.001) and 6 months (OR = 1.19; 95% CI = 1.03, 1.37; p = 0.019). CONCLUSION: Patients with significant distress had marked utilization of ED and inpatient services. DT scores are a source of untapped data in the EHR that can highlight patients in need of intervention, including palliative care and cancer support services.

Perceptions of hospitalized patients and their surrogate decision makers on dialysis initiation: a pilot study.

BACKGROUND: Dialysis is often initiated in the hospital during episodes of acute kidney injury and critical illness. Little is known about how patients or their surrogate decision makers feel about dialysis initiation in the inpatient setting. METHODS: We conducted a prospective cohort study at a large academic center in the United States. All patients who initiated dialysis during a 30-day period in 2016 were approached for enrollment. Study participants were defined as individuals who provided consent for dialysis initiation - either the patient or a surrogate decision-maker. Decisional satisfaction and the degree of shared decision-making were assessed using the decisional attitude scale and the control preferences scale, respectively. These scales were incorporated into a study questionnaire along with an exploratory structured interview. RESULTS: A total of 31 potential participants were eligible and 21 agreed to participate in the study. Continuous renal replacement therapy was used in 14 out of 21 cases (67%) and there was 33% in-hospital mortality in the study cohort. A majority (62%) of patients were unable to participate in the consent process for dialysis initiation and had to rely on a surrogate decision-maker. The mean score for the decisional attitude scale was 4.1 (95% CI 3.8-4.3) with a score of 5 corresponding to high decisional satisfaction. Most of the decisions were classified as shared and incorporated input from clinicians as well as patients or surrogates. Although 90% of participants agreed that they had a choice in making the decision, 81% were unable to mention any alternatives to dialysis initiation. CONCLUSIONS: Dialysis initiation was associated with high decisional satisfaction and most participants felt that the decision incorporated input from patients and providers. However, inpatient dialysis initiation was commonly associated with loss of decisional capacity and reliance on a surrogate decision-maker. This finding is likely driven by critical illness. Survivors of critical illness who remain dialysis dependent may need to revisit conversations about the rationale, risks, and benefits of dialysis.

Randomized Comparison of Electronic Health Record Alert Types in Eliciting Responses about Prognosis in Gynecologic Oncology Patients.

OBJECTIVES: To compare the ability of different electronic health record alert types to elicit responses from users caring for cancer patients benefiting from goals of care (GOC) conversations. METHODS: A validated question asking if the user would be surprised by the patient's 6-month mortality was built as an Epic BestPractice Advisory (BPA) alert in three versions-(1) Required on Open chart (pop-up BPA), (2) Required on Close chart (navigator BPA), and (3) Optional Persistent (Storyboard BPA)-randomized using patient medical record number. Meaningful responses were defined as "Yes" or "No," rather than deferral. Data were extracted over 6 months. RESULTS: Alerts appeared for 685 patients during 1,786 outpatient encounters. Measuring encounters where a meaningful response was elicited, rates were highest for Required on Open (94.8% of encounters), compared with Required on Close (90.1%) and Optional Persistent (19.7%) (p < 0.001). Measuring individual alerts to which responses were given, they were most likely meaningful with Optional Persistent (98.3% of responses) and least likely with Required on Open (68.0%) (p < 0.001). Responses of "No," suggesting poor prognosis and prompting GOC, were more likely with Optional Persistent (13.6%) and Required on Open (10.3%) than with Required on Close (7.0%) (p = 0.028). CONCLUSION: Required alerts had response rates almost five times higher than optional alerts. Timing of alerts affects rates of meaningful responses and possibly the response itself. The alert with the most meaningful responses was also associated with the most interruptions and deferral responses. Considering tradeoffs in these metrics is important in designing clinical decision support to maximize success.

Palliative care phenotypes among critically ill patients and family members: intensive care unit prospective cohort study.

OBJECTIVE: Because the heterogeneity of patients in intensive care units (ICUs) and family members represents a challenge to palliative care delivery, we aimed to determine if distinct phenotypes of palliative care needs exist. METHODS: Prospective cohort study conducted among family members of adult patients undergoing mechanical ventilation in six medical and surgical ICUs. The primary outcome was palliative care need measured by the Needs at the End-of-Life Screening Tool (NEST, range from 0 (no need) to 130 (highest need)) completed 3 days after ICU admission. We also assessed quality of communication, clinician-family relationship and patient centredness of care. Latent class analysis of the NEST's 13 items was used to identify groups with similar patterns of serious palliative care needs. RESULTS: Among 257 family members, latent class analysis yielded a four-class model including complex communication needs (n=26, 10%; median NEST score 68.0), family spiritual and cultural needs (n=21, 8%; 40.0) and patient and family stress needs (n=43, 31%; 31.0), as well as a fourth group with fewer serious needs (n=167, 65%; 14.0). Interclass differences existed in quality of communication (median range 4.0-10.0, p<0.001), favourable clinician-family relationship (range 34.6%-98.2%, p<0.001) and both the patient centredness of care Eliciting Concerns (median range 4.0-5.0, p<0.001) and Decision-Making (median range 2.3-4.5, p<0.001) scales. CONCLUSIONS: Four novel phenotypes of palliative care need were identified among ICU family members with distinct differences in the severity of needs and perceived quality of the clinician-family interaction. Knowledge of need class may help to inform the development of more person-centred models of ICU-based palliative care.

Palliative Care in Advanced Dementia: Comparison of Strategies in Three Countries.

Palliative care including hospice care is appropriate for advanced dementia, but policy initiatives and implementation have lagged, while treatment may vary. We compare care for people with advanced dementia in the United States (US), The Netherlands, and Israel. We conducted a narrative literature review and expert physician consultation around a case scenario focusing on three domains in the care of people with advanced dementia: (1) place of residence, (2) access to palliative care, and (3) treatment. We found that most people with advanced dementia live in nursing homes in the US and The Netherlands, and in the community in Israel. Access to specialist palliative and hospice care is improving in the US but is limited in The Netherlands and Israel. The two data sources consistently showed that treatment varies considerably between countries with, for example, artificial nutrition and hydration differing by state in the US, strongly discouraged in The Netherlands, and widely used in Israel. We conclude that care in each country has positive elements: hospice availability in the US, the general palliative approach in The Netherlands, and home care in Israel. National Dementia Plans should include policy regarding palliative care, and public and professional awareness must be increased.

A memory and organizational aid improves Alzheimer disease research consent capacity: results of a randomized, controlled trial.

OBJECTIVES: Early and progressive cognitive impairments of patients with Alzheimer disease (AD) hinder their capacity to provide informed consent. Unfortunately, the limited research on techniques to improve capacity has shown mixed results. Therefore, the authors tested whether a memory and organizational aid improves the performance of patients with AD on measures of capacity and competency to give informed consent. DESIGN, SETTING, AND PARTICIPANTS: Patients with AD randomly assigned to standard consent or standard plus a memory and organizational aid. INTERVENTION: Memory and organizational aid summarized the content of information mandated under the informed consent disclosure requirements of the Common Rule at a sixth grade reading level. MEASUREMENTS: Three psychiatrists without access to patient data independently reviewed MacArthur Competence Assessment Tool for Clinical Research (MacCAT-CR) interview transcripts to judge whether the patient was capable of providing informed consent. The agreement of at least two of the three experts defined a participant as capable of providing informed consent. Secondary outcomes are MacCAT-CR measures of understanding, appreciation and reasoning, and comparison with cognitively normal older adult norms. RESULTS: AD intervention and control groups were similar in terms of age, education, and cognitive status. The intervention group was more likely to be judged competent than control group and had higher scores on MacCAT-CR measure of understanding. The intervention had no effect on the measures of appreciation or reasoning. CONCLUSIONS: A consent process that addresses the deficits in memory and attention of a patient with AD can improve capacity to give informed consent for early phase AD research. The results also validate the MacCAT-CR as an instrument to measure capacity, especially the understanding subscale. TRIAL REGISTRY: ClinicalTrials.Gov#NCT00105612, http://clinicaltrials.gov/show/NCT00105612.

Top Ten Tips Palliative Care Clinicians Should Know About Integrating Population Health Principles into Practice.

The field of palliative care (PC) has spent the past decade demonstrating that it improves outcomes for patients, clinicians, and health systems. Forward-thinking organizations preparing for a reimbursement system rooted in value have built robust inpatient PC programs and are rapidly moving toward the outpatient and community settings as well. As PC programs get larger and are increasingly tasked with leading a wide variety of diverse initiatives, population health principles can help to focus programs on high-value activities. This article, written by population health researchers and PC clinicians, seeks to provide PC teams nationally with a variety of population health strategies and tools to guide PC delivery throughout the health system and beyond.

Standards, Guidelines, and Quality Measures for Successful Specialty Palliative Care Integration Into Oncology: Current Approaches and Future Directions.

Although robust evidence demonstrates that specialty palliative care integrated into oncology care improves patient and health system outcomes, few clinicians are familiar with the standards, guidelines, and quality measures related to integration. These types of guidance outline principles of best practice and provide a framework for assessing the fidelity of their implementation. Significant advances in the understanding of effective methods and procedures to guide integration of specialty palliative care into oncology have led to a proliferation of guidance documents around the world, with several areas of commonality but also some key differences. Commonalities originate from a shared vision for integration; differences arise from diverse roles of palliative care specialists within cancer care globally. In this review we discuss three of the most cited standards/guidelines, as well as quality measures related to integrated palliative and oncology care. We also recommend changes to the quality measurement framework for palliative care and a new way to match palliative care services to patients with advanced cancer on the basis of care complexity and patient needs, irrespective of prognosis.

Benefit of Tetrahydrocannabinol versus Cannabidiol for Common Palliative Care Symptoms.

Objectives: To determine the relative contributions of tetrahydrocannabinol (THC) and cannabidiol (CBD) to patients' self-ratings of efficacy for common palliative care symptoms. Design: This is an electronic record-based retrospective cohort study. Model development used logistic regression with bootstrapped confidence intervals (CIs), with standard errors clustered to account for multiple observations by each patient. Setting: This is a national Canadian patient portal. Participants: A total of 2,431 patients participated. Main Outcome Measures: Self-ratings of efficacy of cannabis, defined as a three-point reduction in neuropathic pain, anorexia, anxiety symptoms, depressive symptoms, insomnia, and post-traumatic flashbacks. Results: We included 26,150 observations between October 1, 2017 and November 28, 2018. Of the six symptoms, response was associated with increased THC:CBD ratio for neuropathic pain (odds ratio [OR]: 3.58; 95% CI: 1.32-9.68; p = 0.012), insomnia (OR: 2.93; 95% CI: 1.75-4.91; p < 0.001), and depressive symptoms (OR: 1.63; 95% CI: 1.07-2.49; p = 0.022). Increased THC:CBD ratio was not associated with a greater response of post-traumatic stress disorder (PTSD)-related flashbacks (OR: 1.43; 95% CI: 0.60-3.41; p = 0.415) or anorexia (OR: 1.61; 95% CI: 0.70-3.73; p = 0.265). The response for anxiety symptoms was not significant (OR: 1.13; 95% CI: 0.77-1.64; p = 0.53), but showed an inverted U-shaped curve, with maximal benefit at a 1:1 ratio (50% THC). Conclusions: These preliminary results offer a unique view of real-world medical cannabis use and identify several areas for future research.

Top Ten Tips Palliative Care Clinicians Should Know About Medical Cannabis.

The use of medical cannabis is increasing significantly throughout the United States in spite of limited and sometimes contradictory data about its effectiveness. Palliative care providers are being asked to consider cannabis as part of symptom-directed treatment regimens although many providers have limited experience recommending medical cannabis and were trained before it was commercially available. This article seeks to dispel myths about medical cannabis and provides a balanced view of the benefits and burdens of this therapeutic option, providing evidence where it exists and offering practicing clinicians guidance on conditions in which medical cannabis is likely to be helpful or burdensome.

"I'm not ready for hospice": strategies for timely and effective hospice discussions.

Hospice programs offer unique benefits for patients who are near the end of life and their families, and growing evidence indicates that hospice can provide high-quality care. Despite these benefits, many patients do not enroll in hospice, and those who enroll generally do so very late in the course of their illness. Some barriers to hospice referral arise from the requirements of hospice eligibility, which will be difficult to eliminate without major changes to hospice organization and financing. However, the challenges of discussing hospice create other barriers that are more easily remedied. The biggest communication barrier is that physicians are often unsure of how to talk with patients clearly and directly about their poor prognosis and limited treatment options (both requirements of hospice referral) without depriving them of hope. This article describes a structured strategy for discussing hospice, based on techniques of effective communication that physicians use in other "bad news" situations. This strategy can make hospice discussions both more compassionate and more effective.

Palliative Care Office Hours for Patients with Hematologic Malignancies: An Innovative Model for Symptom Management and Education.

BACKGROUND: Palliative care programs are experiencing rapid growth, with demand for consults surpassing staffing. Innovative models are needed to equip nonpalliative care providers to manage basic palliative care issues. OBJECTIVES: To develop a novel program of palliative care office hours for hematologic oncology advanced practice providers, and to evaluate its impact on palliative care consult volume and composition. METHODS: A palliative care nurse practitioner or pharmacist was available for weekday office hours to all inpatient hematologic oncology advanced practice providers at an academic medical center to offer advice on pain, nonpain symptoms, and psychosocial distress. A retrospective study looking at outcome measures after six months of office hour utilization and palliative care consults from the hematologic oncology services. RESULTS: Palliative care office hours had a mean duration of 16 minutes per day (range 5 to 55). A mean of 11 patients were discussed per week (range 4 to 20). Pain, nausea, and anxiety were the issues most frequently raised. Of 299 patients discussed during office hours, 44 (14.7%) subsequently required a full palliative care consult. Overall, palliative care consults from the hematologic oncology services decreased from 19.6% to 10.2% of admissions (87/445 vs. 61/594, p < 0.001) with an increase in consults for goals of care. CONCLUSION: Office hours are an efficient way to address palliative care needs when demand for palliative care consults exceeds capacity. Office hours may serve an educational function as well, enabling primary teams to manage basic palliative care issues with increasing independence over time.

Electronic Goals of Care Alerts: An Innovative Strategy to Promote Primary Palliative Care.

CONTEXT: Given the shortage of palliative care specialists, strategies are needed to promote primary palliative care by nonpalliative care providers. Electronic reminders are frequently used in medicine to standardize practice, but their effectiveness in encouraging goals of care discussions is not well understood. OBJECTIVES: To determine whether brief education and electronic alerts increase the frequency of goals of care discussions. METHODS: All general medicine services at a large academic medical center were included. Each medicine team received brief education on rounds about goals of care communication tool. When a newly admitted patient met predefined criteria, an electronic alert that included the tool was sent to the patient's resident and attending physicians within 48 hours. RESULTS: Of 352 admissions screened over a four-week period, 18% met one or more criteria. The combination of alerts and education increased documentation of goals of care in the medical record from 20.5% (15/73) to 44.6% (25/56) of patients (risk ratio 2.17, 95% CI 1.23-3.72). There were no significant changes in code status, noncode status limitations in care, or palliative care consultation. CONCLUSION: The combination of brief education and electronic goals of care alerts significantly increased documented goals of care discussions. This intervention is simple and feasible in many settings, but larger studies are needed to determine impact on patient outcomes.

How should nations measure the quality of end-of-life care for older adults? Recommendations for an international minimum data set.

Nations face numerous challenges in providing high-quality end-of-life care for their citizens, and an aging population that has a prolonged trajectory of decline and substantial needs for care magnifies these challenges. As nations begin to address these challenges, it will be essential to determine whether their responses are effective, but current national data collection efforts are sporadic, and data are often collected only for patients who receive care through certain funding programs or provider organizations or in selected sites of care. Therefore, governments do not know whether their citizens are receiving adequate care, whether current programs are improving care, or how their outcomes compare with those of other countries. This article describes the importance of developing national minimum data sets that can be used to assess the quality of end-of-life care that older adults receive and recommends key variables that these data sets should include.

You won't know if you're improving unless you measure: recommendations for evaluating Hospice-Veteran Partnerships.

Growing evidence indicates that there are abundant opportunities to improve the care that patients receive near the end of life. Hospice care has been associated with improvements in these and other outcomes, but hospice is underused by most patient populations. Therefore, the Department of Veterans Affairs (VA) has made hospice access a priority in its plan to improve end-of-life care for all veterans. In addition to committing funding for hospice care, the VA has also established a national network of Hospice-Veteran Partnerships (HVPs) whose goal is to improve access to hospice for veterans. This article describes the results of a nationwide consensus project to develop measures of the success of HVPs and recommends key measures that should be used to track improvements and to identify opportunities for highly successful collaborative strategies.

Differences in Terminal Hospitalization Care Between U.S. Men and Women.

CONTEXT: In many settings, men and women receive different care. OBJECTIVES: We sought to determine whether men and women receive different care during terminal hospitalizations. METHODS: We analyzed data of 98,314 adult patients who died while hospitalized in 458 acute care hospitals in the U.S. during 2011. We examined sex-based differences in lengths of stay (LOS), resuscitation status, and intensive interventions and processes of care, adjusting for patient- and hospital-level characteristics. RESULTS: Women represented half of the sample (48,509; 49.34%), were older than men (73.8 vs. 70.6 years, P < 0.0001), and less likely to be married (27.7% vs. 48.3%, P < 0.001). Among all patients, median LOS was four days (interquartile range 2-10); 19.1% of subjects received cardiopulmonary resuscitation; 37.6% had a do-not-resuscitate order during the admission; and 51.6% received mechanical ventilation. Compared with men, women had slightly shorter hospitalizations (adjusted LOS: -0.16 days; 95% CI -0.19, -0.12) and were more likely to have a do-not-resuscitate order (odds ratio [OR] 1.08; 95% CI 1.05, 1.11). Women remained less likely to receive care in an intensive care unit (OR 0.95; 95% CI 0.93, 0.98), cardiopulmonary resuscitation (OR 0.83; 95% CI 0.80, 0.86), mechanical ventilation (OR 0.94; 95% CI 0.91, 0.97), hemodialysis (adjusted OR 0.81; 95% CI 0.78, 0.86), or surgical procedures (OR 0.88; 95% CI 0.84, 0.93). CONCLUSION: Men who die in hospitals receive more aggressive care than women. Further research should examine potential causes of this overall pattern.

How well are we caring for caregivers? Prevalence of grief-related symptoms and need for bereavement support among long-term care staff.

To define the prevalence and correlates of grief-related symptoms among long-term care staff who care for patients near the end of life, a cross-sectional survey was conducted at six Program of All-inclusive Care for the Elderly (PACE) organizations that provide long-term care in the home and in institutions. All clinical and non-clinical program staff were surveyed to examine the prevalence of 20 grief-related symptoms and assess current sources of bereavement support, as well as willingness to use additional sources of support. Surveys were completed by 203/236 staff (86%), who described a wide variety of symptoms they attributed to the death of one of their patients in the past month. Most staff (147/203; 72%) reported at least one symptom. Staff with more symptoms had experienced more patient deaths in the past month (Spearman rho = 0.20, P = 0.007), had worked for a longer time at a PACE organization (Spearman rho = 0.16, P = 0.031), and reported a closer and longer relationship with the last patient who died (Spearman rho = 0.32, P < 0.001; rho = 0.24, P = 0.001). Although staff identified several informal sources of bereavement support (mean 2.3 sources, range 0-6), almost all (n = 194; 96%) said they would use additional support services if they were offered. These community-based long-term care staff experience a variety of symptoms attributable to the deaths of their patients, and would welcome additional sources of bereavement support.