Palliative medicine integration in the USA: cancer centre executives' attitudes.

OBJECTIVES: To compare cancer centre (CC) executives' attitudes towards palliative care between National Cancer Institute-designated CCs (NCI-CCs) and non-NCI-designated CCs (non-NCI-CCs) in 2018 and to examine the changes in attitudes and beliefs between 2009 and 2018. METHODS: CC chief executives at all NCI-CCs and a random sample of non-NCI-CCs were surveyed from April to August 2018. Twelve questions examined the executives' attitudes towards palliative care integration, perceived barriers and self-assessments. The primary outcome was agreement on the statement 'a stronger integration of palliative care services into oncology practice will benefit patients at my institution.' Survey findings from 2018 were compared with data from 2009 to examine changes in attitudes. RESULTS: 52 of 77 (68%) NCI-CCs and 88 of 126 (70%) non-NCI-CCs responded to the survey. A vast majority of executives at NCI-CCs and non-NCI-CCs endorsed palliative care integration (89.7% vs 90.0%; p>0.999). NCI-CCs were more likely to endorse increasing funding for palliative care (52.5% vs 23.1%; p=0.01) and hiring physician specialists (70.0% vs 37.5%; p=0.004) than non-NCI-CCs. The top three perceived barriers among NCI-CCs and non-NCI-CCs were limited institutional budgets (57.9% vs 59.0%; p=0.92), poor reimbursements (55.3% vs 43.6%; p=0.31), and lack of adequately trained palliative care physicians and nurses (52.6% vs 43.6%; p=0.43). Both NCI-CCs and non-NCI-CCs favourably rated their palliative care services (89.7% vs 71.8%; p=0.04) with no major changes since 2009. CONCLUSION: CC executives endorse integration of palliative care, with greater willingness to invest in palliative care among NCI-CCs. Resource limitation continues to be a major barrier.

A National Survey of Palliative Care Team Compositions.

Objective: It is unclear how well palliative care teams are staffed at US cancer centers. Our primary objective was to compare the composition of palliative care teams between National Cancer Institute (NCI)-designated cancer centers and non-NCI-designated cancer centers in 2018. We also assessed changes in team composition between 2009 and 2018. Methods: This national survey examined the team composition in palliative care programs at all 61 NCI-designated cancer centers and in a random sample of 60 of 1252 non-NCI-designated cancer centers in 2018. Responses were compared to those from our 2009 survey. The primary outcome was the presence of an interprofessional team defined as a palliative care physician, nurse, and psychosocial member. Secondary outcomes were the size and number of individual disciplines. Results: In 2018, 52/61 (85%) of NCI-designated and 27/38 (71%) non-NCI-designated cancer centers in the primary outcome comparison responded to the survey. NCI-designated cancer centers were more likely to have interprofessional teams than non-NCI-designated cancer centers (92% vs 67%; P = .009). Non-NCI-designated cancer centers were more likely to have nurse-led teams (14.8% vs 0.0%; P = .01). The median number of disciplines did not differ between groups (NCI, 6.0; non-NCI, 5.0; P = .08). Between 2009 and 2018, NCI-designated and non-NCI-designated cancer centers saw increased proportions of centers with interprofessional teams (NCI, 64.9% vs 92.0%, P < .001; non-NCI, 40.0% vs 66.7%; P = .047). Conclusion: NCI-designated cancer centers were more likely to report having an interprofessional palliative care team than non-NCI-designated cancer centers. Growth has been limited over the past decade, particularly at non-NCI-designated cancer centers.

Personalized sedation goal for agitated delirium in patients with cancer: Balancing comfort and communication.

BACKGROUND: Agitated delirium is common and highly distressing. Medications are often needed to reduce agitation, but it is unclear what the desired level of sedation is. This study assessed personalized sedation goals (PSGs) and their predictors for patients in a delirium clinical trial and in clinical vignettes. METHODS: This was a preplanned secondary analysis of a double-blind randomized clinical trial examining the sedative effect of chlorpromazine and/or haloperidol in patients with agitated delirium. At the baseline, caregivers and nurses were independently asked to select the PSG for the trial patient from 5 choices corresponding to Richmond Agitation Sedation Scale (RASS) scores of 0 or higher (no sedation), -1 to -2, -3, -4, and -5 (deep sedation). Respondents also selected a PSG for 6 vignettes that differed by the level of agitation, ability to communicate, and survival. RESULTS: Forty-two caregivers and 39 nurses answered questions regarding PSGs. For the trial patient, caregivers preferred RASS scores of -1 to -2 most often (36%), whereas nurses preferred an RASS score of -3 most often (51 %). Caregivers were significantly more likely than nurses to choose lighter sedation (odds ratio [OR], 4.8; P = .01) despite reporting greater delirium-related distress (P = .0006). Patients were undersedated 33% to 53% of the time and oversedated 0% to 15% of the time according to the PSG response criteria. In the case vignettes, deeper sedation was preferred by nurses (P < .0001) and for patients who were unable to communicate (OR, 3.1-4.4; P < .0001) and had a shorter life expectancy (OR, 1.7; P = .002). CONCLUSIONS: Caregivers often preferred lighter sedation than nurses. Many patients were undersedated in comparison with caregivers' PSGs, and this highlights room for improvement. LAY SUMMARY: In the last days of life, many patients with cancer develop delirium and become restless/agitated; this can be highly distressing. Caregivers and physicians alike are often concerned about the use of sedatives for agitated delirium and try to find a balance between maximizing comfort and maintaining communication. This study examined the concept of a personalized sedation goal for setting an individualized target for the level of sedation. Caregivers often preferred lighter sedation than nurses. Many patients were undersedated in comparison with caregivers' stated goals, and this highlights room for improvement.

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.

The meaning of parenteral hydration to family caregivers and patients with advanced cancer receiving hospice care.

CONTEXT: In the U.S., patients with advanced cancer who are dehydrated or have decreased oral intake almost always receive parenteral hydration in acute care facilities but rarely in the hospice setting. OBJECTIVES: To describe the meaning of hydration for terminally ill cancer patients in home hospice care and for their primary caregivers. METHODS: Phenomenological interviews were conducted at two time points with 85 patients and 84 caregivers enrolled in a randomized, double-blind, controlled trial examining the efficacy of parenteral hydration in patients with advanced cancer receiving hospice care in the southern U.S. Transcripts were analyzed hermeneutically by the interdisciplinary research team until consensus on the theme labels was reached. RESULTS: Patients and their family caregivers saw hydration as meaning hope and comfort. Hope was the view that hydration might prolong a life of dignity and enhance quality of life by reducing symptoms such as fatigue and increasing patients' alertness. Patients and caregivers also described hydration as improving patients' comfort by reducing pain; enhancing the effectiveness of pain medication; and nourishing the body, mind, and spirit. CONCLUSION: These findings differ from traditional hospice beliefs that dehydration enhances patient comfort, given that patients and their families in the study viewed fluids as enhancing comfort, dignity, and quality of life. Discussion with patients and families about their preferences for hydration may help tailor care plans to meet specific patient needs.

Practice patterns and perceptions about parenteral hydration in the last weeks of life: a survey of palliative care physicians in Latin America.

CONTEXT: Parenteral hydration at the end of life is controversial and has generated considerable debate for decades. OBJECTIVES: To identify palliative care physician parenteral hydration prescribing patterns and factors that influence prescribing levels (PLs) for patients during their last weeks of life. METHODS: A cross-sectional, representative online survey of Latin American palliative care physicians was conducted in 2010. Physicians were asked to report the percentage of their terminally ill patients for whom they prescribed parenteral hydration. Predictors of parenteral hydration PLs were identified using logistic regression analysis. RESULTS: Two hundred thirty-eight of 320 physicians completed the survey (74% response rate). Sixty percent of physicians reported prescribing parenteral hydration to 40%-100% of their patients during the last weeks of life. Factors influencing moderate/high PLs were the following: agreeing that parenteral hydration is clinically and psychologically efficacious (odds ratio [OR] 3.5; 95% confidence interval [CI] 1.5-8.3), disagreeing that withholding parenteral hydration alleviates symptoms (OR 3.3, 95% CI 1.3-8.1), agreeing that parenteral hydration is essential for meeting the minimum standards of care (OR 3.2, 95% CI 1.4-7.5), preferring the subcutaneous route of parenteral hydration for patient comfort and home use (OR 2.9, 95% CI 1.3-6.5), and being younger than 45 years of age (OR 2.6, 95% CI 1.3-5.2). CONCLUSION: The strongest determinant of prescribing patterns was agreement with the clinical/psychological efficaciousness of parenteral hydration. Our results reflect parenteral hydration prescribing patterns and perceptions that substantially differ from the conventional/traditional hospice philosophy. These findings suggest that the decision to prescribe or withhold parenteral hydration is largely based on clinical perceptions and that most palliative care physicians from this region of the world individualize treatment decisions.

Food or medicine: ethnic variations in perceptions of advanced cancer patients and their caregivers regarding artificial hydration during the last weeks of life.

PURPOSE: To identify whether advanced cancer patients receiving home hospice care and their primary caregivers view artificial hydration (AH) as food or medicine, and the demographic and clinical factors influencing these perceptions. METHODS: Participants were enrolled in a randomised, double-blind controlled trial examining the efficacy of AH in cancer hospice patients. In-depth interviews at days 1 and 4 of study enrolment explored the meanings attributed to AH at the end of life. Responses to the question, 'Are these fluids more like food or more like medicine?' were categorised as 'food', 'medicine', 'both' or 'other'. χ(2) analyses were conducted with data from 122 interviews (54 patients and 68 caregivers) to identify differences between patients and caregivers, and by gender, age, ethnicity and caregiver relationship. Predictors of perceptions were identified using logistic regression analysis. RESULTS: Overall, 47 participants (38%) understood the fluids to be more like food, 41 (34%) as medicine, 17 (14%) as both, and 17 (14%) as 'other'. Ethnic minority participants (n=34, 66%) were significantly more likely than non-Hispanic European Americans (n=30, 42%) to view AH as food, or both as food and medicine (p=0.034). Ethnic differences persisted in the final regression model (OR 2.7; 95% CI 1.3 to 5.7, p=0.010). No significant differences were detected between patients and caregivers, or across gender, age, caregivers' relationship to the patients, group assignment, disease severity or cancer type. CONCLUSIONS: AH was perceived as food/nutrition by many cancer patients and caregivers in the study, particularly among ethnic minorities. This perception may lead to greater distress if fluids are discontinued or withheld. Asking patients/caregivers about their AH perceptions may enhance patient/provider communication and culturally appropriate end-of-life care.