Journal of Palliative Medicine

While palliative care (PC) competencies for medical school graduates have been defined, the lack of established curriculum models and assessment tools hampers curricular evaluation.

To describe the scope and content of the University of Rochester's longitudinal, integrated four-year PC curriculum after 17 years of implementation, review student evaluative responses, and compare the curriculum to national competency standards.

Combining and reorganizing a published PC curriculum assessment tool and a list of medical school PC competencies, we created a novel nine-topic framework to assess the content coverage of our curriculum. We queried our electronic medical school curriculum database and surveyed course and clerkship directors, as well as PC, pain, ethics, and humanities faculty, to locate where and when PC topics are taught and to collate student responses to these experiences.

We present a comprehensive list of PC curricular activities over a four-year medical school experience. The curriculum covers all nine PC topics longitudinally in multiple formats. Five in-depth activities cover multiple PC topics in a format that integrates biological, psychological, and social dimensions; these activities have survived and evolved over 17 years in our setting. A majority of year 3 University of Rochester students feel “well” or “extremely well” trained in PC.

Our four-year PC curriculum provides robust and developmentally appropriate training that addresses all nine evidence-based core topics for PC education. Medical student feedback and their Association of American Medical Colleges (AAMC) survey responses suggest that they find their PC learning experiences rewarding. This curriculum could serve as a model for other schools.

Family caregivers (FCGs) face numerous stressors and are at heightened risk of psychological distress. While theoretical explanations exist linking caregiving stressors with outcomes such as anxiety and depression, limited testing of these theories has occurred among FCGs of patients nearing the end of life.

Researchers sought to evaluate mediational relationships among burden experienced by hospice FCGs because of symptom management demands, caregivers' coping responses, and caregivers' psychological distress.

Quantitative data for this descriptive exploratory study were collected through survey. Hypothesized relationships among caregiver variables were examined with structural equation modeling.

Respondents were FCGs (N = 228) of hospice patients receiving services from a large, non-profit community hospice in the Mid-Southern United States.

Burden associated with managing hospice patients' psychological symptoms was shown to predict psychological distress for FCGs. Caregivers' use of escape-avoidance coping responses mediated this relationship.

Results suggest that FCGs would benefit from additional tools to address patients' psychological symptoms at end of life. When faced with psychological symptom management burden, caregivers need a range of coping skills as alternatives to escape-avoidance coping.

The provision of pediatric palliative care in Asia Pacific varies between countries and availability of essential medications for symptoms at the end of life in this region is unclear.

To determine medications available and used in the management of six symptoms at the end of life among pediatric palliative care practitioners in Asia Pacific. To identify alternative pharmacological strategies for these six symptoms if the oral route was no longer possible and injections are refused.

An online survey of all Asia Pacific Hospice Palliative Care Network (APHN) members was carried out to identify medications used for six symptoms (pain, dyspnea, excessive respiratory secretions, nausea/vomiting, restlessness, seizures) in dying children. Two scenarios were of interest: (1) hours to days before death and (2) when injectables were declined or refused.

There were 54 responses from 18 countries. Majority (63.0%) of respondents were hospital based. About half of all respondents were from specialist palliative care services and 55.6% were from high-income countries. All respondents had access to essential analgesics. Several perceived that there were no available drugs locally to treat the five other commonly encountered symptoms. There was a wide variation in preferred drugs for treating each symptom that went beyond differences in drug availability or formulations.

Future studies are needed to explore barriers to medication access and possible knowledge gaps among service providers in the region, so that advocacy and education endeavors by the APHN may be optimized.

Lack of pediatric palliative care (PPC) training impedes successful integration of PPC principles into pediatric oncology.

We examined the impact of an enhanced implementation of the Education in Palliative and End-of-Life Care for Pediatrics (EPEC^®-Pediatrics) curriculum on the following: (1) knowledge dissemination; (2) health professionals' knowledge; (3) practice change; and (4) quality of PPC.

An integrated knowledge translation approach was used with pre-/posttest evaluation of care quality.

Regional Teams of 3–6 health professionals based at 15 pediatric oncology programs in Canada became EPEC-Pediatrics Trainers who taught the curriculum to health professionals (learners) and implemented quality improvement (QI) projects. Trainers recorded the number of learners at each education session and progress on QI goals. Learners completed knowledge surveys. Care quality was assessed through surveys with a cross-sectional sample of children with cancer and their parents about symptoms, quality of life, and care quality plus reviews of deceased patients' health records.

Seventy-two Trainers taught 3475 learners; the majority (96.7%) agreed that their PPC knowledge improved. In addition, 10/15 sites achieved practice change QI goals. The only improvements in care quality were an increased number of days from referral to PPC teams until death by a factor of 1.54 (95% confidence interval [CI] = 1.17–2.03) and from first documentation of advance care planning until death by a factor of 1.50 (95% CI = 1.06–2.11), after adjusting for background variables.

While improvements in care quality were only seen in two areas, our approach was highly effective in achieving knowledge dissemination, knowledge improvement, and practice change goals.

Delirium in patients with terminal cancer is irreversible and increases treatment resistance, which leads to a deterioration in quality of life.

To investigate factors affecting the effectiveness and safety of intravenous chlorpromazine for irreversible delirium in patients with terminal cancer.

Multiple regression analysis for factors affecting treatment effectiveness was carried out based on a retrospective comparison between responders and nonresponders to intravenous chlorpromazine.

Ninety-seven patients with terminal cancer who were treated with intravenous chlorpromazine for irreversible delirium were included.

The rate of patients with ≥50% improvement in mean Nursing Delirium Screening Scale score from pretreatment to day three of chlorpromazine treatment was 0.48 (95% confidence interval [CI]: 0.38–0.58). Factors affecting chlorpromazine treatment effectiveness were hyperactive delirium (odds ratio [OR]: 6.25, 95% CI: 1.14–34.5) and longer survival (OR: 1.096, 95% CI: 1.05–1.14). The mean chlorpromazine dose was low, at 17.9 mg/day. Adverse events were reported in 11 patients (11.3%) by day three of chlorpromazine treatment, and all were observed in patients who survived less than two weeks after chlorpromazine treatment. Patients who died, who had decreased blood pressure during chlorpromazine administration, and who showed acute akathisia all displayed shock index ≥1.

Intravenous administration of low-dose chlorpromazine may be an effective and safe treatment option for delirium in patients with terminal cancer who have hyperactive delirium, longer predictive prognosis, and shock index <1.

The Texas Revised Inventory of Grief-Present Scale (TRIG-Present) is a widely used tool to measure grief. Most existing research related to the assessment and characteristics of grief has been conducted sampling bereaved Western subjects and, as such, limited information is available on the experience of grief in Chinese samples.

This study aims to validate the Chinese version of the TRIG-Present (TRIG-Present-C) and explore the predictors of grief among bereaved adults in China.

Responses from 460 bereaved Chinese adults were collected through an online survey. Subjects completed a specially developed questionnaire covering demographic data/loss-related variables, the TRIG-Present-C, and Center for Epidemiologic Studies Depression Scale (CES-D-9).

Confirmatory factor analysis validates the original one-factor structure. The overall content validity index is equal to 1.0. Significant correlations were observed, with CES-D-9 and factor subscales (r ranged from −0.228 to 0.607, p < 0.05) indicating the convergent validity. The TRIG-Present-C scores distinguished grieving individuals from those experiencing unanticipated death and those where death was anticipated. The internal consistency is satisfactory (Cronbach's α = 0.957). In multiple regression analyses, with grief severity as the dependent variable, 28.6% of the variance was explained by religious belief, the immediacy of the loss, the loss of a first-degree relative, and where the deceased was relatively young.

The TRIG-Present-C scale is a reliable and valid instrument for assessing grief reaction among bereaved Chinese adults. Religious belief, loss of a first-degree relative, where the deceased was relatively young, and the immediacy of loss were associated with higher levels of grief.

The success of our hospital-based Palliative Care program stimulated requests to duplicate the program across the health system continuum of care.

To develop a model of care focused on a high-need, high-cost population that could be implemented across all care settings, including hospitals and patients' homes.

To fiscally support program expansion from hospital to home, we conducted a retrospective cost analysis for home-based Palliative Care (HBPC)-enrolled patients with continuous claims months before program enrollment through date of death. The HBPC enrollees were evaluated against a cohort group of CMS (Centers for Medicare & Medicaid Service) and Medicare Advantage patients who did not participate in the HBPC program (n = 3135). Twenty-one months of claims leading up to the date of death were evaluated for both populations. The analysis was designed to test whether Palliative Care patients demonstrated less overall claims expense and service utilization in the same periods as patients without Palliative Care. Claim months were grouped into three-month clusters for evaluation and statistical testing of per member per month utilization and cost.

Overall, HBPC patients demonstrated significantly less service utilization and cost in the months leading up to death. Cost differences were primarily driven by clear cost divergence in the last three months of life [$9,843 (PC) vs. $27,530 (C)]. Our program grew from a hospital-based program to include the establishment of a home-based program.

Palliative Care programs can successfully expand outside hospital walls to serve a high need/high-cost patient population.

Palliative care team (PCT) is a common type of palliative care services. However, distress in cancer patients may be underestimated by hospital staff. Reasons for PCT consultation may be inconsistent with patients' actual needs.

We aimed to examine the proportions of discrepancy between the reasons for PCT consultation and actual PCT activities.

We performed an observational study based on datasets of PCT activities at Kindai University Hospital. Differences in the proportion between reasons for PCT consultation and actual PCT activities were calculated.

Datasets of 368 hospitalized cancer patients for whom the PCT performed interventions were analyzed. The average patient age was 61 years. Hepatobiliary and pancreatic cancer were the most common primary sites (20%) followed by blood (12%) and lung (11%). Pain management was the most frequent reason for PCT consultation (67%) and PCT activities (65%). Delirium was more likely to be treated by the PCT, but less likely to be listed as a reason for consultation. The need for support for family and for decision making was less often recognized by hospital staff. Cancer-related fatigue (CRF) and depression were more likely listed as reasons for consultation, but less likely to receive PCT intervention.

Delirium and the need for family and decision-making support were underrecognized by hospital staff. PCT intervention for CRF and depression was often withheld because of very late referral. Appropriate timing of PCT consultations is important. Providing educational opportunities for hospital staff to comprehensively assess patient's multidimensional distress is needed.

The difference of end-of-life care for left ventricular assist device (LVAD) patients, between destination therapy (DT) and bridge to transplant (BTT), and the effect of palliative care in this population remain unknown.

The primary outcomes of this retrospective cohort study were the place of death, do-not-resuscitate (DNR) order, palliative care consultation in the last month, and hospice enrollment. Secondary outcomes were time on the LVAD, life-sustaining treatment in the last week of life, LVAD deactivation, and clinical trajectory.

Eighty-nine patients who newly underwent LVAD therapy between 2010 and 2016 and died before May 2017 were divided into DT (59) and BTT (30).

At death, BTT patients (61.1 ± 8.9 years) were significantly younger (p = 0.046) than DT patients (65.8 ± 12.9 years). Median (25th–75th percentile) time on LVAD was significantly shorter (p = 0.042) in BTT (152 days, 41.3–375.8) than in DT (358 days, 64–892), but the Kaplan–Meier curves were not significantly different (p = 0.055). The place of death (p = 0.092), DNR order (DT; 70.2%, BTT; 76.7%, p = 0.52), palliative care consultation in the last month (DT; 57.1% and BTT; 41.6%, p = 0.22), and hospice enrollment (DT; 8.5%, BTT; 10.0%, p = 1.0), as well as any of secondary outcomes, were not significantly different between groups. After January 2014, palliative care consultation in the last month increased significantly from 14.2% to 78.9% (p < 0.001), and death in intensive care unit decreased significantly (from 79.4% to 52.8%, p = 0.024) with less frequent mechanical ventilation (from 71.4% to 50.0%, p = 0.047) and renal replacement therapy (42.9% to 19.2%, p = 0.017).

The clinical course of deceased LVAD patients, circumstances, and treatments at the end of life did not differ significantly between the BTT and DT groups. Palliative care consult seemed associated with less resource utilization. Palliative care team should get involved in the care of LVAD patients, not only for DT but also for BTT.

Little is known about how decision-making conversations occur during pediatric intensive care unit (PICU) family conferences (FCs).

Describe the decision-making process and implementation of shared decision making (SDM) during PICU FCs.

Observational study.

University-based tertiary care PICU, including 31 parents and 94 PICU healthcare professionals involved in FCs.

We recorded, transcribed, and analyzed 14 PICU FCs involving decision-making discussions. We used a modified grounded theory and content analysis approach to explore the use of traditionally described stages of decision making (DM) (information exchange, deliberation, and determining a plan). We also identified the presence or absence of predefined SDM elements.

DM involved the following modified stages: information exchange; information-oriented deliberation; plan-oriented deliberation; and determining a plan. Conversations progressed through stages in a nonlinear manner. For the main decision discussed, all conferences included a presentation of the clinical issues, treatment alternatives, and uncertainty. A minority of FCs included assessing the family's understanding (21%), assessing the family's need for input from others (28%), exploring the family's desired decision-making role (35%), and eliciting the family's opinion (42%).

In the FCs studied, we found that DM is a nonlinear process. We also found that several SDM elements that could provide information about parents' perspectives and needs did not always occur, identifying areas for process improvement.

Although mounting evidence supports the use of palliative care (PC) to improve care experiences and quality of life for oncology patients, the frequency of and factors associated with PC use during oncology-related hospitalizations remain unknown.

Using the National Inpatient Sample dataset, hospitalizations during 2012–2014 for a primary diagnosis of cancer with high risk of in-hospital mortality were identified. PC use was identified using the V66.7 ICD-9 code. Factors associated with the cost of hospitalization were identified using multivariable gamma regression.

During the study period, 124,186 hospitalizations were identified with a primary diagnosis of malignancy (melanoma, breast, colon, gynecologic, prostate, male genitourinary, head/neck, urinary tract, noncolon gastrointestinal, lung, brain, bone/soft tissue, endocrine, or nonlung thoracic). Most patients were treated at a teaching hospital (51–77% by cancer type), and use of PC ranged from 10% for patients with endocrine cancers to 31% for patients with melanoma. Patients utilizing PC had a lower frequency of operative procedures (4–33% vs. 34–79% by cancer type, all p ≤ 0.001), a higher rate of in-hospital death (30–45% vs. 4–10% by cancer type, all p < 0.001), and a lower total hospitalization cost (median: $5076–17,151 vs. $10,918–29,287 by cancer type, p ≤ 0.01 except male genitourinary). In an adjusted analysis, the cost of hospitalization was significantly associated (all p < 0.001) with patient gender, race, age, operative, in-hospital death, extended length of stay, and PC.

In summary, inpatient PC utilization varied by cancer type. PC was associated with lower utilization of surgical procedures, shorter length of stay, and lower hospitalization cost. Lower hospitalization cost was also seen for patients who were older, female, or African American.

Although racial/ethnic minorities receive more intense, nonbeneficial healthcare at the end of life, the role of race/ethnicity independent of other social determinants of health is not well understood.

Examine the association between race/ethnicity, other key social determinants of health, and healthcare intensity in the last 30 days of life for those with chronic, life-limiting illness.

We identified 22,068 decedents with chronic illness cared for at a single healthcare system in Washington State who died between 2010 and 2015 and linked electronic health records to death certificate data.

Binomial regression models were used to test associations of healthcare intensity with race/ethnicity, insurance status, education, and median income by zip code. Path analyses tested direct and indirect effects of race/ethnicity with insurance, education, and median income by zip code used as mediators.

We examined three measures of healthcare intensity: (1) intensive care unit admission, (2) use of mechanical ventilation, and (3) receipt of cardiopulmonary resuscitation.

Minority race/ethnicity, lower income and educational attainment, and Medicaid and military insurance were associated with higher intensity care. Socioeconomic disadvantage accounted for some of the higher intensity in racial/ethnic minorities, but most of the effects were direct effects of race/ethnicity.

The effects of minority race/ethnicity on healthcare intensity at the end of life are only partly mediated by other social determinants of health. Future interventions should address the factors driving both direct and indirect effects of race/ethnicity on healthcare intensity.

Methadone is an attractive medication for treating children with advanced cancer with pain as it is the only long-acting opioid available as a liquid. However, it is not frequently used due to concerns about potential toxicities and side effects.

Evaluate the efficacy and safety of methadone as the first long-acting opioid in children with advanced cancer.

Retrospective chart review of 52 consecutive patients referred to Pediatric Supportive Care for pain management started on methadone as their first long-acting opioid. Data collected at baseline, follow-up visits #1 (F1) and #2 (F2) included child and parent-reported outcomes for various physical and psychological symptoms, opioid side effects and other clinical data. Symptoms were rated on a 0 (not at all) to 4 (a lot) scale.

Pain (mean ± standard deviation [SD]) scored by the child was 3.6 (±0.6)/4 at baseline and 1.8 (±1.1)/4 at F1 (p < 0.0001). Compared to baseline, pain scored by the child at F2 was 1.2 (±1.3)/4 (p < 0.0001). Pain scored by the parent was 3.5 (±0.7)/4 at baseline and 1.4 (±1.3)/4 at F1 (p < 0.0001). Compared to baseline, pain scored by the parent at F2 was 1.0 (±1.2)/4 (p < 0.0001). Thirty-three (70%) patients at F1 and 23 (79%) patients at F2 did not need a change in dose of methadone. No cardiac arrhythmias or opioid neurotoxicity was observed.

Initiation of methadone was effective and safe as the first long-acting opioid in children with pain.

Although timely palliative care is recommended for patients with advanced cancer, referrals to palliative care services are often late.

To identify factors associated with early referral to an oncology palliative care clinic and to describe symptom severity according to timing of referral.

We conducted a retrospective review of 337 patients with advanced cancer referred to outpatient palliative care at a comprehensive cancer center. We gathered data related to patient demographics, diagnosis, and referral. Timing of referral was categorized as early (>12 months before death), intermediate (6–12 months before death), or late (<6 months before death). Ordinal logistic regression was used to determine factors related to referral timing, and the Kruskal–Wallis test to determine symptom severity in each referral timing category.

Of the 337 patients, 232 (69%) referrals were late, 60 (18%) intermediate, and 45 (13%) early. On multivariable analysis, earlier referral was associated with earlier primary cancer diagnosis (p = 0.004), and referral for pain and symptom management (p = 0.001). Patients who were referred late had worse overall Edmonton Symptom Assessment System distress scores, as well as worse tiredness, nausea, drowsiness, appetite, and wellbeing (all p ≤ 0.001). Severity of pain, shortness of breath, anxiety, and depression did not differ based on time of referral.

A longer disease course and referral for symptom management were associated with earlier referral, whereas overall symptom burden was higher for late referrals. Further research is required on combining symptom screening with timely referral to improve symptom management in advanced cancer.

Patients with end-stage renal disease (ESRD) have a high symptom burden and this negatively impacts health-related quality of life. Little is known about the symptom burden of Latinos with ESRD and variable access to hemodialysis.

To estimate the symptom burden of Latinos with ESRD and access to standard or emergency-only hemodialysis.

Observational descriptive study of Latino adults with ESRD receiving standard or emergency-only hemodialysis. Patients completed the Edmonton Symptom Assessment System Revised: Renal (ESAS-r:Renal). We used descriptive statistics and propensity score adjustment to conduct the analysis.

ESAS-r:Renal.

Participants (N = 67) had a mean age of 58 years (standard deviation [SD] ±13) and a mean Charlson Comorbidity Index of 6.6 ± 2.5, and had been on hemodialysis a mean of 42 months (SD ±43). On average, Latinos with ESRD experienced 7 (SD ±3) symptoms with a mean of 5 ± 3 symptoms reported as moderate or severe. After adjusting for propensity score, emergency-only hemodialysis patients reported experiencing more nausea compared to standard hemodialysis patients (odds ratio 8.95, 95% confidence interval: 1.17–68.31, p = 0.03).

Latinos with ESRD have a high symptom burden and compared to patients with standard hemodialysis, patients who rely on emergency-only hemodialysis report more nausea. A national treatment strategy that provides standard hemodialysis for undocumented immigrants with ESRD is an important next step.

More than 80% of patients with advanced cancer develop weight loss. Because preclinical data suggest poly (ADP-ribose) polymerase (PARP) inhibitors can treat this weight loss, this study was undertaken to explore the PARP inhibitor veliparib for this indication.

The current study was undertaken to analyze prospectively gathered data on weight in cancer patients on PARP inhibitors.

The current study relied on a previously published, prospectively conducted phase 1 single institution trial that combined veliparib and topotecan (NCT01012817) as antineoplastic therapy for advanced cancer patients. Serial weight data and, when available and clinically relevant, computerized tomography scans were also examined.

The primary endpoint was 10% or greater weight gain from trial enrollment.

Nearly all 60 patients lost weight over time. Only one patient manifested a 10% or greater gain in weight. However, review of computerized tomography L3 images showed this weight gain was a manifestation of ascites. Four other patients gained 5% of their baseline weight. However, findings in two patients with available radiographs showed no evidence of muscle augmentation.

The addition of the PARP inhibitor veliparib to chemotherapy does not appear to result in notable weight gain or in weight maintenance in patients with advanced cancer. Interventions other than PARP inhibitors should be considered for the palliation/treatment of cancer-associated weight loss.

The International Summit on Intellectual Disability and Dementia (Glasgow, Scotland; October 2016) noted that advanced dementia can be categorized as that stage of dementia progression characterized by significant losses in cognitive and physical function, including a high probability of further deterioration and leading to death. The questions before the summit were whether there were similarities and differences in expressions of advanced dementia between adults with intellectual disability (ID) and adults in the general population.

The summit noted challenges in the staging of advanced dementia in people with ID with the criteria in measures designed to stage dementia in the general population heavily weighted on notable impairment in activities of daily living. For many people with an ID, there is already dependence in these domains generally related to the individuals pre-existing level of intellectual impairment, that is, totally unrelated to dementia. Hence, the summit agreed that it is imperative that change is measured from the person's prior functioning in combination with clinical impressions of decline and of increasing comorbidity including particular attention to late onset epilepsy in people with Down syndrome. It was further noted that quality care planning must recognize the greater likelihood of physical symptoms, comorbidities, immobility, and neuropathological deterioration.

The summit recommended an investment in research to more clearly identify measures for ascertaining advanced dementia, inform practice guidelines to aid clinicians and service providers, and identify additional markers that may help signal decline and progression into advanced dementia among people with various levels of pre-existing intellectual impairment.