Palliative care education and research at US cancer centers: A national survey.

BACKGROUND: Palliative care (PC) education and research are essential to developing a skilled workforce and evidence base to support the delivery of quality cancer care. The current state of PC education and research at US cancer centers is unclear. In this national survey, the education and research programs of the National Cancer Institute (NCI)-designated and nondesignated cancer centers and the changes between 2009 and 2018 are compared. METHODS: Between April and August 2018, PC program leaders at all NCI-designated cancer centers and a random sample of nondesignated centers were sent a survey to examine the structure, processes, and outcomes of their programs on the basis of questions from a 2009 national survey. This preplanned analysis focused on education and research. RESULTS: There were 52 of 61 (85%) NCI-designated and 27 of 38 (71%) nondesignated cancer centers that responded. NCI-designated centers were more likely than nondesignated centers to have a PC fellowship program (87% vs 30%; P < .001), training for advanced practice providers (71% vs 44%; P = .03), PC research program (58% vs 15%; P < .001), peer-reviewed funding (43% vs 11%; P = .005), and philanthropic grants (41% vs 7%; P = .002). There were few significant improvements in PC education or research between 2009 and 2018 for both groups, notable exceptions include an increase in PC fellowships (38% vs 87%; P < .001) and mandatory PC rotations for medical oncology fellows (29% vs 55%; P = .02) at NCI-designated cancer centers. CONCLUSIONS: PC education and research are more developed at NCI-designated cancer centers. Despite some progress over the past decade, it is relatively slow and suboptimal.

Neuroleptic strategies for terminal agitation in patients with cancer and delirium at an acute palliative care unit: a single-centre, double-blind, parallel-group, randomised trial.

BACKGROUND: The role of neuroleptics for terminal agitated delirium is controversial. We assessed the effect of three neuroleptic strategies on refractory agitation in patients with cancer with terminal delirium. METHODS: In this single-centre, double-blind, parallel-group, randomised trial, patients with advanced cancer, aged at least 18 years, admitted to the palliative and supportive care unit at the University of Texas MD Anderson Cancer Center (Houston, TX, USA), with refractory agitation, despite low-dose haloperidol, were randomly assigned to receive intravenous haloperidol dose escalation at 2 mg every 4 h, neuroleptic rotation with chlorpromazine at 25 mg every 4 h, or combined haloperidol at 1 mg and chlorpromazine at 12·5 mg every 4 h, until death or discharge. Rescue doses identical to the scheduled doses were administered at inception, and then hourly as needed. Permuted block randomisation (block size six; 1:1:1) was done, stratified by baseline Richmond Agitation Sedation Scale (RASS) scores. Research staff, clinicians, patients, and caregivers were masked to group assignment. The primary outcome was change in RASS score from time 0 to 24 h. Comparisons among group were done by modified intention-to-treat analysis. This completed study is registered with ClinicalTrials.gov, NCT03021486. FINDINGS: Between July 5, 2017, and July 1, 2019, 998 patients were screened for eligibility, with 68 being enrolled and randomly assigned to treatment; 45 received the masked study interventions (escalation n=15, rotation n=16, combination n=14). RASS score decreased significantly within 30 min and remained low at 24 h in the escalation group (n=10, mean RASS score change between 0 h and 24 h -3·6 [95% CI -5·0 to -2·2]), rotation group (n=11, -3·3 [-4·4 to -2·2]), and combination group (n=10, -3·0 [-4·6 to -1·4]), with no difference among groups (p=0·71). The most common serious toxicity was hypotension (escalation n=6 [40%], rotation n=5 [31%], combination n=3 [21%]); there were no treatment-related deaths. INTERPRETATION: Our data provide preliminary evidence that the three strategies of neuroleptics might reduce agitation in patients with terminal agitation. These findings are in the context of the single-centre design, small sample size, and lack of a placebo-only group. FUNDING: National Institute of Nursing Research.

State of palliative care services at US cancer centers: An updated national survey.

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.

Expression of existential suffering in two patients with advanced cancer in an acute palliative care unit.

BACKGROUND: Recognizing and managing existential suffering remains challenging. We present two cases demonstrating how existential suffering manifests in patients and how to manage it to alleviate suffering. CASE DESCRIPTION: Case 1: A 69-year-old man with renal cell carcinoma receiving end-of-life care expressed fear of lying down "as he may not wake up." He also expressed concerns of not being a good Christian. Supportive psychotherapy and chaplain support were provided, with anxiolytic medications as needed. He was able to express his fear of dying and concern about his family, and Edmonton Symptom Assessment System scores improved. He died peacefully with family at bedside. Case 2: A 71-year-old woman presented with follicular lymphoma and colonic obstruction requiring nasogastric drain of fecaloid matter. Initially, she felt that focusing on comfort rather than cure symbolized giving up but eventually felt at peace. Physical symptoms were well-controlled but emotionally she became more distressed, repeatedly asking angrily, "Why is it taking so long to die?." She was supported by her family through Bible readings and prayers, but she was distressed about being a burden to them. An interdisciplinary approach involving expressive supportive counseling, spiritual care, and integrative medicine resulted in limited distress relief. Owing to increasing agitation, the patient and family agreed to titrate chlorpromazine to sedation. Her family was appreciative that she was restful until her death. CONCLUSION: Existential suffering manifests through multiple domains in each patient. A combination of pharmacologic and non-pharmacologic techniques may be needed to relieve end-of-life suffering.

Inequalities in Financial Distress, Symptoms, and Quality of Life Among Patients with Advanced Cancer in France and the U.S.

BACKGROUND: Financial distress (FD) is common among patients with advanced cancer. Our purpose was to compare the frequency and intensity of FD and its associations with symptom distress and quality of life (QOL) in these patients in France and the U.S. MATERIALS AND METHODS: In this secondary analysis of two cross-sectional studies, we assessed data on 292 patients who received cancer care at a public hospital or a comprehensive cancer center in France (143 patients) or the U.S. (149 patients). Outpatients and hospitalized patients over 18 years of age with advanced lung or breast or colorectal or prostate cancer were included. Diagnosed cognitive disorder was considered a noninclusion criterion. Advanced cancer included relapse or metastasis or locally advanced cancer or at least a second-line chemotherapy regimen. Patients self-rated FD and assessed symptoms, psychosocial distress, and QOL on validated questionnaires. RESULTS: The average patient age was 59 years, and 144 (49%) were female. FD and high intensity were reported more frequently in U.S. patients than in French (respectively 129 [88%] vs. 74 [52%], p < .001; 100 [98%] vs. 48 [34%], p < .001,). QOL was rated higher by the U.S. patients than by the French (69 [SD, 18] vs. 63 [SD, 18], p = .003). French patients had more psychological symptoms such as anxiety (8 [SD, 4] vs. 6 [SD, 5], p = .008). Associations were found between FD and U.S. residence, FD and single status (0.907, p = .023), and FD and metastasis (1.538, p = .036). In contrast, negative associations were found between FD and older age (-0.052, p = .003) and FD and France residence (-3.376, p = .001). CONCLUSION: Regardless of health care system, FD is frequent in patients with advanced cancer. U.S. patients were more likely to have FD than French patients but reported better QOL. Further research should focus on factors contributing to FD and opportunities for remediation. IMPLICATIONS FOR PRACTICE: Suffering is experienced in any component of the lives of patients with a life-threatening illness. Financial distress (FD) is one of the least explored cancer-related symptoms, and there are limited studies describing its impact on this frail population. This study highlights the high frequency and severity of FD in patients with advanced cancer in the U.S. and France as well as its impact on their physical and emotional symptoms and their quality of life in these different health care systems. It is necessary for all health care providers to explore and evaluate the presence of FD in patients living with life-threatening illnesses.

Testing the feasibility of using the Edmonton Symptom Assessment System (ESAS) to assess caregiver symptom burden.

OBJECTIVE: Caregiver symptom assessment is not part of regular clinical cancer care. The ESAS (Edmonton Symptom Assessment System) is a multidimensional tool regularly used to measure symptom burden in patients but not caregivers. The objectives of the present study were to determine the feasibility of the ESAS in caregiver completion (defined as ≥ 9 of 12 items) and determine its concurrent validity with the Zarit Burden Interview-12 (ZBI-12). METHOD: We conducted a prospective study on 90 patient-primary caregiver dyads seen in an outpatient supportive care center in a cancer center. The 12 item ESAS-FS (financial-spiritual) was completed by the dyads along with other clinical and psychosocial measures. RESULTS: The caregiver ESAS was found to be feasible (90/90 caregivers, 100% completed ≥ 9/12 items) and useful (66/90 caregivers, 73%) by caregivers to report their symptom burden. Some 68 of 90 (76%) caregivers had symptom distress scores ≥ 4 on at least one symptom. A significant association was found between the ESAS scores of caregivers and patients for fatigue (0.03), depression (<0.01), anxiety (<0.01), sleep (0.05), well-being (<0.01), financial distress (<0.01), spiritual pain (<0.01), and total ESAS score (<0.01). Concurrent validity with the ZBI-12 was not achieved (r = 0.53, p = 0.74). A significant correlation was found between caregiver ESAS scores and time spent feeding, housekeeping, total combined caregiver activities, and total ZBI-12 scores. SIGNIFICANCE OF RESULTS: The caregiver ESAS is a feasible tool and was found useful by our caregivers. Further research is needed to modify the ESAS based on caregivers' recommendations, and further psychometric studies need to be conducted.

Effect of Lorazepam With Haloperidol vs Haloperidol Alone on Agitated Delirium in Patients With Advanced Cancer Receiving Palliative Care: A Randomized Clinical Trial.

Importance: The use of benzodiazepines to control agitation in delirium in the last days of life is controversial. Objective: To compare the effect of lorazepam vs placebo as an adjuvant to haloperidol for persistent agitation in patients with delirium in the setting of advanced cancer. Design, Setting, and Participants: Single-center, double-blind, parallel-group, randomized clinical trial conducted at an acute palliative care unit at MD Anderson Cancer Center, Texas, enrolling 93 patients with advanced cancer and agitated delirium despite scheduled haloperidol from February 11, 2014, to June 30, 2016, with data collection completed in October 2016. Interventions: Lorazepam (3 mg) intravenously (n = 47) or placebo (n = 43) in addition to haloperidol (2 mg) intravenously upon the onset of an agitation episode. Main Outcomes and Measures: The primary outcome was change in Richmond Agitation-Sedation Scale (RASS) score (range, -5 [unarousable] to 4 [very agitated or combative]) from baseline to 8 hours after treatment administration. Secondary end points were rescue neuroleptic use, delirium recall, comfort (perceived by caregivers and nurses), communication capacity, delirium severity, adverse effects, discharge outcomes, and overall survival. Results: Among 90 randomized patients (mean age, 62 years; women, 42 [47%]), 58 (64%) received the study medication and 52 (90%) completed the trial. Lorazepam + haloperidol resulted in a significantly greater reduction of RASS score at 8 hours (-4.1 points) than placebo + haloperidol (-2.3 points) (mean difference, -1.9 points [95% CI, -2.8 to -0.9]; P < .001). The lorazepam + haloperidol group required less median rescue neuroleptics (2.0 mg) than the placebo + haloperidol group (4.0 mg) (median difference, -1.0 mg [95% CI, -2.0 to 0]; P = .009) and was perceived to be more comfortable by both blinded caregivers and nurses (caregivers: 84% for the lorazepam + haloperidol group vs 37% for the placebo + haloperidol group; mean difference, 47% [95% CI, 14% to 73%], P = .007; nurses: 77% for the lorazepam + haloperidol group vs 30% for the placebo + haloperidol group; mean difference, 47% [95% CI, 17% to 71%], P = .005). No significant between-group differences were found in delirium-related distress and survival. The most common adverse effect was hypokinesia (3 patients in the lorazepam + haloperidol group [19%] and 4 patients in the placebo + haloperidol group [27%]). Conclusions and Relevance: In this preliminary trial of hospitalized patients with agitated delirium in the setting of advanced cancer, the addition of lorazepam to haloperidol compared with haloperidol alone resulted in a significantly greater reduction in agitation at 8 hours. Further research is needed to assess generalizability and adverse effects. Trial Registration: clinicaltrials.gov Identifier: NCT01949662.

Advanced cancer patients' reported wishes at the end of life: a randomized controlled trial.

CONTEXT: Conversations about end-of-life (EOL) wishes are challenging for many clinicians. The Go Wish card game (GWG) was developed to facilitate these conversations. Little is known about the type and consistency of EOL wishes using the GWG in advanced cancer patients. METHODS: We conducted a randomized controlled trial to assess the EOL wishes of 100 patients with advanced cancer treated at The University of Texas MD Anderson Cancer Center. The purpose of this study was to determine the EOL wishes of patients with advanced cancer and to compare patients' preference between the GWG and List of wishes/statements (LOS) containing the same number of items. Patients were randomized into four groups and completed either the GWG or a checklist of 35 LOS and one opened statement found on the GWG cards; patients were asked to categorize these wishes as very, somewhat, or not important. After 4-24 h, the patients were asked to complete the same or other test. Group A (n = 25) received LOS-LOS, group B (n = 25) received GWG-GWG, group C (n = 26) received GWG-LOS, and group D (n = 24) received LOS-GWG. All patients completed the State-Trait Anxiety Inventory (STAI) for adults before and after the first test. RESULTS: Median age (interquartile range = IQR): 56 (27-83) years. Age, sex, ethnicity, marital status, religion, education, and cancer diagnosis did not differ significantly among the four groups. All patients were able to complete the GWG and/or LOS. The ten most common wishes identified as very important by patients in the first and second test were to be at peace with God (74 vs. 71 %); to pray (62 vs. 61 %); and to have family present (57 vs. 61 %). to be free from pain (54 vs. 60 %); not being a burden to my family (48 vs. 49 %); to trust my doctor (44 vs. 45 %); to keep my sense of humor (41 vs. 45 %); to say goodbye to important people in my life (41 vs. 37 %); to have my family prepared for my death (40 vs. 49 %); and to be able to help others (36 vs. 31 %). There was significant association among the frequency of responses of the study groups. Of the 50 patients exposed to both tests, 43 (86 %) agreed that the GWG instructions were clear, 45 (90 %) agreed that the GWG was easy to understand, 31 (62 %) preferred the GWG, 39 (78 %) agreed that the GWG did not increase their anxiety and 31 (62 %) agreed that having conversations about EOL priorities was beneficial. The median STAI score after GWG was 48 (interquartile range, 39-59) vs. 47 (interquartile range, 27-63) after LOS (p = 0.2952). CONCLUSION: Patients with advanced cancer assigned high importance to spirituality and the presence/relationships of family, and these wishes were consistent over the two tests. The GWG did not worsen anxiety.

Characteristics and outcomes of patients with advanced cancer evaluated by a palliative care team at an emergency center. A retrospective study.

PURPOSE: Patients with advanced cancer may be referred for a palliative care consultation (PC) from a hospital emergency center (EC) or as inpatients. However, research about symptoms and outcomes in patients with advanced cancer who receive PC at the EC is limited. METHODS: We reviewed demographic variables, frequency and intensity of symptoms (using the Edmonton Symptom Assessment Scale (ESAS)), PC interventions, time from admission to PC consultation, hospitalization duration, and discharge destination of 200 advanced cancer patients referred to PC services from the EC ("EC patients") and 200 matched advanced cancer inpatients referred to PC services ("inpatients") from January 1, 2010, through December 31, 2011. RESULTS: The median age for all patients was 56 years (range, 48-64 years); 222 (56 %) patients were female, and 243 (61 %) were white. There were no significant demographic differences between the EC patients and inpatients. The median time from admission to PC was 12 h (range, 7-23 h) for the EC patients and 24 h (24-96 h) for the inpatients (p < 0.0001). For EC patients and inpatients, symptoms at presentation for PC consultation included uncontrolled pain (83 and 45 %, respectively; p < 0.0001), nausea/vomiting/constipation (41 and 19 %, respectively; p < 0.0001), and dyspnea (29 and 19 %, respectively; p = 0.02). The medians and interquartile ranges of baseline symptom intensities for EC patients and inpatients, respectively, were as follows: pain, 7 (5-9) and 5 (2-8) (p < 0.0001); fatigue, 7 (4-8) and 6 (4-8) (p = 0.0517); and sleep, 6 (0-8) and 4 (1-7) (p = 0.1064). At follow-up, improvement was observed in pain (125/238 [53 %]), sleep (59/131 [45 %]), well-being (32/82 [39 %]), fatigue (53/139 [38 %]), anxiety (51/132 [39 %]), appetite (46/132 [35 %]), dyspnea (49/160 [31 %]), nausea (52/170 [31 %]), depression (36/123 [29 %]), and drowsiness (37/126 [29 %]). After PC consultations, discharge/admission destinations for EC patients were as follows: home, 65 (33 %); home hospice, 13 (7 %); inpatient hospice, 8 (4 %); regular hospital floor, 65 (33 %); and PC unit, 46 (23 %). The median duration of hospitalization was 92 h (range, 69-114) for hospitalized EC patients and 125 h (range, 108-142) for inpatients (p < 0.0001). CONCLUSIONS: Referral to PC from the EC led to earlier delivery of PC with subsequent earlier control of symptoms. EC patients who received PC consultations and were hospitalized had shorter hospitalizations than PC referral in the inpatient area. More research is needed to describe the impact of PC services on symptom assessment and management and on goals and plan of care in patients with advanced illness admitted to the EC.

Frequency, intensity, and correlates of spiritual pain in advanced cancer patients assessed in a supportive/palliative care clinic.

OBJECTIVE: Regular assessments of spiritual distress/spiritual pain among patients in a supportive/palliative care clinic (SCPC) are limited or unavailable. We modified the Edmonton Symptom Assessment Scale (ESAS) by adding spiritual pain (SP) to the scale (0 = best, 10 = worst) to determine the frequency, intensity, and correlates of self-reported SP (≥1/10) (pain deep in your soul/being that is not physical) among these advanced cancer patients. METHOD: We reviewed 292 consecutive consults of advanced cancer patients (ACPs) who were evaluated at our SCPC between October of 2012 and January of 2013. Symptoms were assessed using the new instrument (termed the ESAS-FS). RESULTS: The median age of patients was 61 (range = 22-92). Some 53% were male; 189 (65%) were white, 45 (15%) African American, and 34 (12%) Hispanic. Some 123 of 282 (44%) of ACPs had SP (mean (95% CI) = 4(3.5-4.4). Advanced cancer patients with SP had worse pain [mean (95% CI) = 5.3(4.8, 5.8) vs. 4.5(4.0, 5.0)] (p = 0.02); depression [4.2(3.7, 4.7) vs. 2.1(1.7, 2.6), p < 0.0001]; anxiety [4.2(3.6, 4.7) vs. 2.5(2.0, 3.0), p < 0.0001]; drowsiness [4.2(3.7, 4.7) vs. 2.8(2.3, 3.2), p < 0.0001]; well-being [5.4(4.9, 5.8) vs. 4.5(4.1, 4.9), p = 0.0136]; and financial distress (FD) [4.4(3.9, 5.0) vs. 2.2(1.8, 2.7), p < 0.0001]. Spiritual pain correlated (Spearman) with depression (r = 0.45, p < 0.0001), anxiety (r = 0.34, p < 0.0001), drowsiness (r = 0.26, p < 0.0001), and FD (r = 0.44, p < 0.0001). Multivariate analysis showed an association with FD [OR (95% Wald CI) = 1.204(1.104-1.313), p < 0.0001] and depression [1.218(1.110-1.336), p < 0.0001]. The odds that patients who had SP at baseline would also have SP at follow-up were 182% higher (OR = 2.82) than for patients who were SP-negative at baseline (p = 0.0029). SP at follow-up correlated with depression (r = 0.35, p < 0.0001), anxiety (r = 0.25, p = 0.001), well-being (r = 0.27, p = 0.0006), nausea (r = 0.29, p = 0.0002), and financial distress (r = 0.42, p < 0.0001). SIGNIFICANCE OF RESULTS: Spiritual pain, which is correlated with physical and psychological distress, was reported in more than 40% of ACPs. Employment of the ESAS-FS allows ACPs with SP to be identified and evaluated in an SCPC. More research is needed.

The Frequency, Characteristics, and Outcomes Among Cancer Patients With Delirium Admitted to an Acute Palliative Care Unit.

BACKGROUND: Delirium is a common neuropsychiatric condition seen in patients with severe illness, such as advanced cancer. Few published studies are available of the frequency, course, and outcomes of standardized management of delirium in advanced cancer patients admitted to acute palliative care unit (APCU). In this study, we examined the frequency, characteristics, and outcomes of delirium in patients with advanced cancer admitted to an APCU. METHODS: Medical records of 609 consecutive patients admitted to the APCU from January 2011 through December 2011 were reviewed. Data on patients' demographics; Memorial Delirium Assessment Scale (MDAS) score; palliative care specialist (PCS) diagnosis of delirium; delirium etiology, subtype, and reversibility; late development of delirium; and discharge outcome were collected. Delirium was diagnosed with MDAS score ≥7 and by a PCS using Diagnostic and Statistical Manual, 4th edition, Text Revision criteria. All patients admitted to the APCU received standardized assessments and management of delirium per best practice guidelines in delirium management. RESULTS: Of 556 patients in the APCU, 323 (58%) had a diagnosis of delirium. Of these, 229 (71%) had a delirium diagnosis on admission and 94 (29%) developed delirium after admission to the APCU. Delirium reversed in 85 of 323 episodes (26%). Half of patients with delirium (n = 162) died. Patients with the diagnosis of delirium had a lower median overall survival than those without delirium. Patients who developed delirium after admission to the APCU had poorer survival (p ≤ .0001) and a lower rate of delirium reversal (p = .03) compared with those admitted with delirium. CONCLUSION: More than half of the patients admitted to the APCU had delirium. Reversibility occurred in almost one-third of cases. Diagnosis of delirium was associated with poorer survival.

Financial Distress and Its Associations With Physical and Emotional Symptoms and Quality of Life Among Advanced Cancer Patients.

OBJECTIVE: There are limited data on the effects of financial distress (FD) on overall suffering and quality of life (QOL) of patients with advanced cancer (AdCa). In this cross-sectional study, we examined the frequency of FD and its correlates in AdCa. PATIENTS AND METHODS: We interviewed 149 patients, 77 at a comprehensive cancer center (CCC) and 72 at a general public hospital (GPH). AdCa completed a self-rated FD (subjective experience of distress attributed to financial problems) numeric rating scale (0 = best, 10 = worst) and validated questionnaires assessing symptoms (Edmonton Symptom Assessment System [ESAS]), psychosocial distress (Hospital Anxiety and Depression Scale [HADS]), and QOL (Functional Assessment of Cancer Therapy-General [FACT-G]). RESULTS: The patients' median age was 60 years (95% confidence interval [CI]: 58.6-61.5 years); 74 (50%) were female; 48 of 77 at CCC (62%) versus 13 of 72 at GPH (18%) were white; 21 of 77 (27%) versus 32 of 72 (38%) at CCC and GPH, respectively, were black; and 7 of 77 (9%) versus 27 of 72 (38%) at CCC and GPH, respectively, were Hispanic (p < .0001). FD was present in 65 of 75 at CCC (86%; 95% CI: 76%-93%) versus 65 of 72 at GPH (90%; 95% CI: 81%-96%; p = .45). The median intensity of FD at CCC and GPH was 4 (interquartile range [IQR]: 1-7) versus 8 (IQR: 3-10), respectively (p = .0003). FD was reported as more severe than physical distress, distress about physical functioning, social/family distress, and emotional distress by 45 (30%), 46 (31%), 64 (43%), and 55 (37%) AdCa, respectively (all significantly worse for patients at GPH) (p < .05). AdCa reported that FD was affecting their general well-being (0 = not at all, 10 = very much) with a median score of 5 (IQR: 1-8). FD correlated (Spearman correlation) with FACT-G (r = -0.23, p = .0057); HADS-anxiety (r = .27, p = .0014), ESAS-anxiety (r = .2, p = .0151), and ESAS-depression (r = .18, p = .0336). CONCLUSION: FD was very frequent in both groups, but median intensity was double among GPH patients. More than 30% of AdCa rated FD to be more severe than physical, family, and emotional distress. More research is needed to better characterize FD and its correlates in AdCa and possible interventions. IMPLICATIONS FOR PRACTICE: Financial distress is an important and common factor contributing to the suffering of advanced cancer patients and their caregivers. It should be suspected in patients with persistent, refractory symptom expression. Early identification, measurement, and documentation will allow clinical teams to develop interventions to improve financial distress and its impact on quality of life of advanced cancer patients.

The association between religiosity and resuscitation status preference among patients with advanced cancer.

OBJECTIVE: The potential influence of patient religious and spiritual beliefs on the approach to end-of-life care and resuscitation status preferences is not well understood. The aim of this study was to assess the association between religiosity and resuscitation preferences in advanced-cancer patients. METHOD: We performed a secondary analysis of a randomized controlled trial that evaluated the influence of physician communication style on patient resuscitation preferences. All patients completed the Santa Clara Strength of Religious Faith Questionnaire-Short Form (SCSRFQ-SF) and expressed their resuscitation preferences. We determined the frequency of resuscitation preferences and its association with intensity of religiosity. RESULTS: A total of 78 patients completed the study. The median age was 54 years, with a range of 18-78. Some 46 (59%) were women; 57 patients (73%) were Caucasian, 15 (19%) African American, and 5 (7%) Hispanic. A total of 46 patients (56%) were Protestant and 13 (17%) Catholic. Some 53 of 60 patients who chose Do Not Resuscitate status (DNR) (88%) and 16 of 18 patients who refused DNR (89%) for a video-simulated patient were highly religious (p = 0.64). When asked about a DNR for themselves after watching the videos, 43 of 48 who refused DNR (90%) and 26 of 30 patients who chose DNR (87%) were highly religious (p = 0.08). The Spearman correlation coefficient for patients choosing DNR for themselves and intensity of religiosity was r = -0.16 (p = 0.16). Some 30 patients (38%) who chose DNR for the video patient refused DNR for themselves, and 42 who chose DNR for both the video patient and themselves (54%) were highly religious (p = NS). SIGNIFICANCE OF RESULTS: There was no significant association between intensity of patient religiosity and DNR preference for either the video patient or the patients themselves. Other beliefs and demographic factors likely impact end-of-life discussions and resuscitation status preferences.

Association between hypogonadism, symptom burden, and survival in male patients with advanced cancer.

BACKGROUND: A high frequency of hypogonadism has been reported in male patients with advanced cancer. The current study was performed to evaluate the association between low testosterone levels, symptom burden, and survival in male patients with cancer. METHODS: Of 131 consecutive male patients with cancer, 119 (91%) had an endocrine evaluation of total (TT), free (FT), and bioavailable testosterone (BT); high-sensitivity C-reactive protein (CRP); vitamin B12; thyroid-stimulating hormone; 25-hydroxy vitamin D; and cortisol levels when presenting with symptoms of fatigue and/or anorexia-cachexia. Symptoms were evaluated by the Edmonton Symptom Assessment Scale. The authors examined the correlation using the Spearman test and survival with the log-rank test and Cox regression analysis. RESULTS: The median age of the patients was 64 years; the majority of patients were white (85 patients; 71%). The median TT level was 209 ng/dL (normal: ≥ 200 ng/dL), the median FT was 4.4 ng/dL (normal: ≥ 9 ng/dL), and the median BT was 22.0 ng/dL (normal: ≥ 61 ng/dL). Low TT, FT, and BT values were all associated with worse fatigue (P ≤ .04), poor Eastern Cooperative Oncology Group performance status (P ≤ .05), weight loss (P ≤ .01), and opioid use (P ≤ .005). Low TT and FT were associated with increased anxiety (P ≤ .04), a decreased feeling of well-being (P ≤ .04), and increased dyspnea (P ≤ .05), whereas low BT was only found to be associated with anorexia (P = .05). Decreased TT, FT, and BT values were all found to be significantly associated with elevated CRP and low albumin and hemoglobin. On multivariate analysis, decreased survival was associated with low TT (hazards ratio [HR], 1.66; P = .034), declining Eastern Cooperative Oncology Group performance status (HR, 1.55; P = .004), high CRP (HR, 3.28; P < .001), and decreased albumin (HR, 2.52; P < .001). CONCLUSIONS: In male patients with cancer, low testosterone levels were associated with systemic inflammation, weight loss, increased symptom burden, and decreased survival. A high frequency of hypogonadism has been reported in male patients with advanced cancer. In the current study, an increased symptom burden, systemic inflammation, weight loss, opioid use, and poor survival were found to be associated with decreased testosterone levels in male patients with cancer. Cancer 2014;120:1586-1593. © 2014 American Cancer Society.

Characteristics and outcomes of advanced cancer patients who miss outpatient supportive care consult appointments.

BACKGROUND: Missed appointments (MA) are frequent, but there are no studies on the effects of the first MA at supportive care outpatient clinics on clinical outcomes. METHODS: We determined the frequency of MA among all patients referred to our clinic from January-December 2011 and recorded the clinical and demographic data and outcomes of 218 MA patients and 217 consecutive patients who kept their first appointments (KA). RESULTS: Of 1,352 advanced-cancer patients referred to our clinic, 218 (16 %) had an MA. The MA patients' median age was 57 years (interquartile range, 49-67). The mean time between referral and appointment was 7.4 days (range, 0-71) for KA patients vs. 9.1 days (range, 0-89) for MA patients (P = 0.006). Reasons for missing included admission to the hospital (17/218 [8 %]), death (4/218 [2 %]), appointments with primary oncologists (37/218 [18 %]), other appointments (19/218 [9 %]), visits to the emergency room (ER) (9/218 [9 %]), and unknown (111/218 [54 %]). MA patients visited the ER more at 2 weeks (16/214 [7 %] vs. 5/217 [2 %], P = 0.010) and 4 weeks (17/205 [8 %] vs. 8/217 [4 %], P = 0.060). Median-survival duration for MA patients was 177 days (range, 127-215) vs. 253 days (range, 192-347) for KA patients (P = 0.013). Multivariate analysis showed that MAs were associated with longer time between referral and scheduled appointment (odds ratio [OR], 1.026/day, P = 0.030), referral from targeted therapy services (OR, 2.177, P = 0.004), living in Texas/Louisiana regions (OR, 2.345, P = 0.002), having an advanced directive (OR, 0.154, P < 0.0001), and being referred for symptom control (OR, 0.024, P = 0.0003). CONCLUSION: MA patients with advanced cancer have worse survival and increased ER utilization than KA patients. Patients at higher risk for MA should undergo more aggressive follow-up. More research is needed.

Engaging Mortality: Effective Implementation of Dignity Therapy.

Background: Patients consider the life review intervention, Dignity Therapy (DT), beneficial to themselves and their families. However, DT has inconsistent effects on symptoms and lacks evidence of effects on spiritual/existential outcomes. Objective: To compare usual outpatient palliative care and chaplain-led or nurse-led DT for effects on a quality-of-life outcome, dignity impact. Design/Setting/Subjects: In a stepped-wedge trial, six sites in the United States transitioned from usual care to either chaplain-led or nurse-led DT in a random order. Of 638 eligible cancer patients (age ≥55 years), 579 (59% female, mean age 66.4 ± 7.4 years, 78% White, 61% stage 4 cancer) provided data for analysis. Methods: Over six weeks, patients completed pretest/posttest measures, including the Dignity Impact Scale (DIS, ranges 7-35, low-high impact) and engaged in DT+usual care or usual care. They completed procedures in person (steps 1-3) or via Zoom (step 4 during pandemic). We used multiple imputation and regression analysis adjusting for pretest DIS, study site, and step. Results: At pretest, mean DIS scores were 24.3 ± 4.3 and 25.9 ± 4.3 for the DT (n = 317) and usual care (n = 262) groups, respectively. Adjusting for pretest DIS scores, site, and step, the chaplain-led (ß = 1.7, p = 0.02) and nurse-led (ß = 2.1, p = 0.005) groups reported significantly higher posttest DIS scores than usual care. Adjusting for age, sex, race, education, and income, the effect on DIS scores remained significant for both DT groups. Conclusion: Whether led by chaplains or nurses, DT improved dignity for outpatient palliative care patients with cancer. This rigorous trial of DT is a milestone in palliative care and spiritual health services research. clinicaltrials.gov: NCT03209440.

A multicenter survey of Hispanic caregiver preferences for patient decision control in the United States and Latin America.

BACKGROUND: Understanding family caregivers' decisional role preferences is important for communication, quality of care, and patient and family satisfaction. The family caregiver has an important role in a patient's decisional role preferences. There are limited studies on family caregivers' preferences of the patient's decision control at the end of life among Hispanics. AIMS: To identify Hispanic caregivers' preferences of the decision control of patients with advanced cancer and to compare the preferences of caregivers in Hispanic Latin American and Hispanic American caregivers. DESIGN: We surveyed patients and their family caregivers referred to outpatient palliative care clinics in the United States, Chile, Argentina, and Guatemala. Caregiver preferences of patient's decision control were evaluated using the Control Preference Scale. Caregivers' and patients' sociodemographic variables, patient performance status, and Hispanic American patient acculturation level were also collected. PARTICIPANTS: A total of 387 caregivers were surveyed: 100 (26%) in Chile, 99 (26%) in Argentina, 97 (25%) in Guatemala, and 91 (24%) in the United States. The median age was 56 years, and 59% were female. RESULTS: Caregiver preference of patient's decision control was passive, shared, and active for 10 (11%), 45 (52%), and 32 (37%) Hispanic American caregivers and 54 (19%), 178 (62%), and 55 (19%) Hispanic Latin American caregivers (p = 0.0023), respectively. Caregiver acculturation level did not affect the preferences of the Hispanic American sample (p = 0.60). CONCLUSIONS: Most Hispanic family caregivers preferred the patient to make shared decisions. Hispanic Latin American caregivers more frequently preferred patients to assume a passive decisional role. Acculturation did not influence the preferences of Hispanic American caregivers.

"A Pain Deep in Your Soul (Being) that is Not Physical:" Assessing Spiritual Pain in Integrative Oncology Consultations.

CONTEXT: Spiritual pain contributes to the suffering of cancer patients. However, it is unclear whether patients seen outside of palliative care report spiritual pain and its relationship with symptom burden. OBJECTIVES: Characteristics of patients reporting spiritual pain were examined, as well as the association of spiritual pain with symptom burden and how spiritual pain affected the factor structure of the Edmonton Symptom Assessment System (ESAS). METHODS: A retrospective chart review was conducted of integrative oncology patients who completed the PROMIS10 and a modified ESAS (ESAS-FS) including financial distress and spiritual pain (pain deep in your soul/being that is not physical). Multiple logistic regression was used to assess associations between demographics and spiritual pain. T-tests compared ESAS-FS symptoms and global health for patients endorsing spiritual pain (0 vs. ≥1). Principal component analyses (oblique rotation) were also used to determine ESAS-FS symptom clusters. RESULTS: The sample (N = 1662) was mostly women (65%) and 39% endorsed spiritual pain at least ≥one. Men and older individuals were less likely to endorse spiritual pain (ps < 0.05). Presence of spiritual pain was associated with worse symptoms on the ESAS-FS and global health (ps < 0.001). The ESAS-FS had two symptom clusters, with the psychological factor including depression, anxiety, wellbeing, sleep, financial distress, and spiritual pain (Cronbach's alpha 0.78). CONCLUSION: Assessing spiritual pain and understanding the effects of its presence or absence in the context of other physical and psychosocial symptoms may provide additional opportunities for preventing exacerbation of symptoms, improving quality of life, and enhancing overall experience of care.

Self-administered Meditation Application Intervention for Cancer Patients With Psychosocial Distress: A Pilot Study.

BACKGROUND: We explored the use of a novel smart phone-based application (APP) for delivery and monitoring of meditation to treat mood symptoms experienced by cancer patients. METHODS: We assessed the feasibility of using a meditation delivery and tracking APP over 2-weeks and its impact on cancer patients' self-reported anxiety and depression. Outpatients reporting depression and/or anxiety were recruited and randomized to the APP or waitlist control group. Assessments included an expectancy scale, exit survey, mood rating before and after each meditation, and the Edmonton Symptom Assessment Scale (ESAS-FS), Hospital Anxiety and Depression Scale (HADS), and Pittsburgh Sleep Quality Index (PSQI) at baseline and after 2-weeks. The primary aim was to assess feasibility; secondary aims included satisfaction with the APP, association between meditation frequency and length with self-reported symptoms, and change in symptom measures (symptoms, anxiety, depression, and sleep). RESULTS: Our study included 35 participants (17 meditation group; 18 controls) who were primarily female (94%) with breast cancer (60%). The 61% enrollment rate and 71% adherence rate met pre-specified feasibility criteria. Most meditation group participants described the APP as "Useful" to "Very Useful" and would "Probably" or "Definitely" recommend its use. Mixed model analysis revealed a statistically significant association between meditation length (5, 10, or 15 minutes) and change in anxiety, with 15-minute sessions associated with greater reductions in anxiety. In the exit survey, more meditation group vs. control group participants reported improved focus, mood, and sleep. Study groups differed significantly by ESAS fatigue score change; the meditation group decreased a median of 1.5 pts (IQR 2.5) and the control group increased a median of 0.5 points (IQR 2). The meditation group, but not the control group, experienced statistically significant improvement in ESAS fatigue, depression, anxiety, appetite, and physical, psychological, and global distress. Change in PSQI and HADS anxiety and depression scores did not reveal any statistically significant between-group differences. CONCLUSIONS: This pilot study demonstrated the feasibility and acceptability of a meditation APP for cancer patients. Meditation APP users reported improvement in several measures of symptom distress. Future studies should explore ways to enhance the APP's usability and clinical benefit.

Impact of an Interdisciplinary Goals-of-Care Program Among Medical Inpatients at a Comprehensive Cancer Center During the COVID-19 Pandemic: A Propensity Score Analysis.

PURPOSE: Many hospitals have established goals-of-care programs in response to the coronavirus disease 2019 pandemic; however, few have reported their outcomes. We examined the impact of a multicomponent interdisciplinary goals-of-care program on intensive care unit (ICU) mortality and hospital outcomes for medical inpatients with cancer. METHODS: This single-center study with a quasi-experimental design included consecutive adult patients with cancer admitted to medical units at the MD Anderson Cancer Center, TX, during the 8-month preimplementation (May 1, 2019-December 31, 2019) and postimplementation period (May 1, 2020-December 31, 2020). The primary outcome was ICU mortality. Secondary outcomes included ICU length of stay, hospital mortality, and proportion/timing of care plan documentation. Propensity score weighting was used to adjust for differences in potential covariates, including age, sex, cancer diagnosis, race/ethnicity, and Sequential Organ Failure Assessment score. RESULTS: This study involved 12,941 hospitalized patients with cancer (pre n = 6,977; post n = 5,964) including 1,365 ICU admissions (pre n = 727; post n = 638). After multicomponent goals-of-care program initiation, we observed a significant reduction in ICU mortality (28.2% v 21.9%; change -6.3%, 95% CI, -9.6 to -3.1; P = .0001). We also observed significant decreases in length of ICU stay (mean change -1.4 days, 95% CI, -2.0 to -0.7; P < .0001) and in-hospital mortality (7% v 6.1%, mean change -0.9%, 95% CI, -1.5 to -0.3; P = .004). The proportion of hospitalized patients with an in-hospital do-not-resuscitate order increased significantly from 14.7% to 19.6% after implementation (odds ratio, 1.4; 95% CI, 1.3 to 1.5; P < .0001), and do-not-resuscitate order was established earlier (mean difference -3.0 days, 95% CI, -3.9 to -2.1; P < .0001). CONCLUSION: This study showed improvement in hospital outcomes and care plan documentation after implementation of a system-wide, multicomponent goals-of-care intervention.