Journal of Palliative Medicine

Hospice/palliative care emphasizes excellent care for patients, but what about longer-term caregiver outcomes after their caregiving role? What is the role of services in working to ensure that caregivers can re-engage with all aspects of life, including paid employment given that this is an identified stressor for caregivers?

This hypothesis-generating study aimed to explore self-reported, post-care workforce participation, and any association with hospice/palliative care contact.

Cross-sectional random population interviews.

People in the general population were randomly selected for face-to-face interviews about well-being including end-of-life care in South Australia. Questions included experiences of people dying an expected death and whether interviewees provided care. Demographic data included current workforce participation. A regression model explored associations with workforce participation.

Of 8945 interviews over three years, 171 participants aged 20–60 years (working age) provided intermittent hands-on care: two in five were men and two in three had qualifications beyond high school; one in two decedents had accessed palliative care services. Reflecting the bivariable analyses, logistic regression models showed associations with workforce participation and: being male (odds ratio [OR] 6.71); use of palliative care services (OR 4.85); and higher levels of education (OR 3.54).

An association between workforce participation after caregiving ceased and the use of palliative care services was described, controlling for key factors. Reasons may include continued working, greater rates of return to work, earlier return to work or that people in the workforce are more likely to access services.

Patients with serious illness may elect to transition their care to comfort measures only (CMO) while in the hospital. Although studies have shown that routine hospice care is underutilized, the rate of general inpatient hospice (GIP) use among CMO patients during their terminal admission remains unclear.

We sought to (1) examine the rate of GIP utilization and (2) identify factors associated with its use among hospitalized CMO decedents.

CMO decedents in two academic, tertiary care hospitals in the United States who died between October 1, 2020 and October 31, 2021, were subgrouped based on their primary medical service (GIP vs. non-GIP) at the time of inpatient death. Data abstracted from the electronic health record included demographics, primary diagnosis codes, Rothman Index (RI), time of CMO order, ordering clinician type, time of death, and length of stay (LOS). Multivariable logistic regression analysis was performed, adjusting for relevant covariates.

Of 1475 CMO decedents, only 321 (n = 22%) patients received GIP. On multivariable analysis, CMO patients who died in an ICU were five times less likely (odds ratio [OR] = 0.18, confidence interval [95% CI] 0.11–0.29) to receive GIP. Every 10-point increase in RI raised the likelihood of receiving GIP by 59% (OR = 1.59, 95% CI 1.39–1.80).

Most CMO decedents died in the hospital without GIP. Compared with GIP decedents, non-GIP decedents were less acutely ill. There was no difference in total LOS between the two groups. CMO decedents were much less likely to receive GIP in an ICU. The RI may help clinicians identify CMO patients who would benefit from GIP earlier in their terminal admission.

The population of older adults who are unpartnered and childless (i.e., “kinless”) is increasing across the globe, and may be at risk for lower quality end-of-life (EoL) experiences due to lack of family support, assistance, and advocacy. Yet, little research exists on the EoL experiences of “kinless” older adults.

To document associations between family structure (i.e., presence or absence of partner or child) and intensity of EoL experiences (i.e., visits to medicalized settings before death).

The study design is a cross-sectional population-based register study of the population of Denmark.

Participants include all adults age 60 years and older who died of natural causes in Denmark from 2009 to 2016 (n = 137,599 decedents).

“Kinless” older adults (reference = has partner, has child) were the least likely group to visit the hospital (two or more times; odds ratio [OR] = 0.74, confidence interval [CI] = 0.70–0.77), emergency department (one or more times; OR = 0.90, CI = 0.86–0.93), and intensive care unit (one or more times; OR = 0.71, CI = 0.67–0.75) before death.

“Kinless” older adults in Denmark were less likely to experience medically intensive care at the EoL. Further research is needed to understand factors associated with this pattern to ensure that all individuals receive high quality EoL care regardless of their family structure and family tie availability.

The objective prognostic score (OPS) needs to be modified to reflect practical palliative care circumstances.

We aimed to validate modified models of OPS with few or no laboratory tests for patients with advanced cancer.

An observational study was performed.

A secondary analysis of an international, multicenter cohort study of patients in East Asia was performed. The subjects were inpatients with advanced cancer in the palliative care unit.

We developed two modified OPS (mOPS) models to predict two-week survival: mOPS-A consisted of two symptoms, two objective signs, and three laboratory results, while mOPS-B consisted of three symptoms, two signs, and no laboratory data. We compared the accuracy of the prognostic models using sensitivity, specificity, and area under the receiver operating characteristic curve (AUROC). Calibration plots for two-week survival and net reclassification indices (NRIs) were compared for the two models. Survival differences between higher and lower score groups of each model were identified by the log-rank test.

We included a total of 1796 subjects having median survival of 19.0 days. We found that mOPS-A had higher specificity (0.805–0.836) and higher AUROCs (0.791–0.797). In contrast, mOPS-B showed higher sensitivity (0.721–0.725) and acceptable AUROCs (0.740–0.751) for prediction of two-week survival. Two mOPSs showed good concordance in calibration plots. Considering NRIs, replacing the original OPS with mOPSs improved overall reclassification (absolute NRI: 0.47–4.15%). Higher score groups of mOPS-A and mOPS-B showed poorer survival than those of lower score groups (p < 0.001).

mOPSs used reduced laboratory data and had relatively good accuracy for predicting survival in advanced cancer patients receiving palliative care.

Pediatric patients often undergo surgery during terminal admissions. However, the involvement and timing of palliative care consults in caring for these patients has not been readily described.

To describe the presence and timing of palliative care consults for pediatric patients who undergo surgical procedures during terminal admissions.

Retrospective cohort study using data from the electronic health record.

Pediatric patients who underwent at least one surgical procedure during a terminal admission at an urban, quaternary hospital in the United States from January 1, 2016 to December 31, 2021.

Patients' medical, surgical, and admission-level characteristics were abstracted. Associations were evaluated between these characteristics and the occurrence and timing of a palliative care consult relative to surgery and death.

Of 134 patients, 84% received a palliative care consult during their terminal admission. Approximately 36% of consults occurred before surgery, and 12% were within one day of death. Children without a palliative care consult were more likely than children with a consult to die during surgery (19.1% vs. 2.7%, p = 0.02), have surgery within 24 hours of death (52.4% vs. 15.9%, p < 0.001), and undergo a full resuscitation attempt (47.6% vs. 12.4%, p = 0.002). Receipt of a palliative care consultation did not differ by patient sex, reported race and ethnicity, language, insurance, or income level.

Palliative care consults support high-quality end-of-life care for children and impact perioperative outcomes, including intensity of surgical care and resuscitation in the final hours of life.

Post-acute care outcomes for patients with cancer <65 with multiple payers are largely unknown.

Describe the population and outcomes of younger adults discharged to skilled nursing facility (SNF) and those discharged home or with home health care six months following hospitalization.

Descriptive cohort analysis.

Using a linkage between the Colorado All Payers Claims Database and the Colorado Central Cancer Registry, we studied patients <65 with stage III or IV advanced cancer between 2012 and 2017.

Receipt of cancer treatment, 30-day readmission, death, and hospice use. Groups of interest were compared by patient demographics and disease characteristics using chi-square tests. Logistic regression was used to describe unadjusted and adjusted outcome rates among discharge setting. Kaplan-Meier method was used to estimate survival by discharge destination.

Three percent of patients were discharged to SNF, 79.0% to home, and 18.0% to home health care. SNF discharges were less likely to receive cancer treatment. Among decedents, 39.0%, 51.0%, and 58.0% of SNF, home, and home health care discharges received hospice, respectively. Patients with Medicaid were more likely to be discharged to an SNF. Black/Hispanic patients were more likely to have Medicaid and received less radiation and hospice care, irrespective of discharge location. Those who were discharged to SNF were more likely to receive radiation compared to White patients.

Younger patients with cancer discharged to SNF were unlikely to receive cancer treatment and hospice care before death. Racial disparities exist in cancer treatment receipt and hospice use warranting further investigation.

For many cancer survivors post-cure, chronic pain is a devastating complication of cancer treatment. The prevalence of chronic pain among cancer survivors is double that of the general population. However, little is known about the pain experience of cancer survivors who may have a different perspective than people with advanced cancer or people with noncancer pain.

To understand the lived experience of chronic cancer-related pain in cancer survivors.

We used a qualitative design with a descriptive phenomenological method to conduct in-depth interviews of 13 cancer survivors residing in the United States who completed curative cancer therapy, were at least three months from treatment, and experienced pain attributable to cancer. Data collection was focused on the lived experience and management of chronic cancer-related pain and a deep understanding of how the experience of chronic cancer-related pain shapes pain management choices.

The participants had a variety of primary cancer types and cancer pain syndromes. Three essential themes epitomized the experience of living with chronic cancer-related pain: invisible suffering at the cost of survival, an opioid paradox, and a lack of answers on what to expect and what might help.

The results highlight an opportunity for pain self-management, education, and psychosocial interventions to optimize pain in cancer. Participants' experiences identify several opportunities to improve chronic cancer-related pain. Future efforts should prioritize access to multimodal pain treatments, high-quality communication, and expand clinicians' knowledge and skills to manage chronic pain.

Racial and ethnic minoritized people with dementia (PWD) are at high risk of disenrollment from hospice, yet little is known about the relationship between hospice quality and racial disparities in disenrollment among PWD.

To assess the association between race and disenrollment between and within hospice quality categories in PWD.

Retrospective cohort study of 100% Medicare beneficiaries 65+ enrolled in hospice with a principal diagnosis of dementia, July 2012–December 2017. Race and ethnicity (White/Black/Hispanic/Asian and Pacific Islander [AAPI]) was assessed with the Research Triangle Institute (RTI) algorithm. Hospice quality was assessed with the publicly-available Consumer Assessment of Healthcare Providers and Systems (CAHPS) survey item on overall hospice rating, including a category for hospices exempt from public reporting (unrated).

The sample included 673,102 PWD (mean age 86, 66% female, 85% White, 7.3% Black, 6.3% Hispanic, 1.6% AAPI) enrolled in 4371 hospices nationwide. Likelihood of disenrollment was higher in hospices in the lowest quartile of quality ratings (vs. highest quartile) for both White (adjusted odds ratio [AOR] 1.12 [95% confidence interval 1.06–1.19]) and minoritized PWD (AOR range 1.2–1.3) and was substantially higher in unrated hospices (AOR range 1.8–2.0). Within both low- and high-quality hospices, minoritized PWD were more likely to be disenrolled compared with White PWD (AOR range 1.18–1.45).

Hospice quality predicts disenrollment, but does not fully explain disparities in disenrollment for minoritized PWD. Efforts to improve racial equity in hospice should focus both on increasing equity in access to high-quality hospices and improving care for racial minoritized PWD in all hospices.

In advanced cancer, clinician-expressed empathy can improve patients' psychological outcomes. It remains unknown whether all patients benefit equally from empathy.

To explore whether the effect of clinician-expressed empathy on patients' psychological outcomes is moderated by patient ethnicity.

Using an experimental video-vignette design, 160 participants watched a consultation-video with/without added empathy. Using regression analysis, the moderating effect of ethnicity (non-Western- vs. Dutch/Western-immigration background) on the relationship between empathy and psychological outcomes was assessed.

The main effect of empathy on satisfaction (p = 0.001), trust (p = 0.002), and self-efficacy (p < 0.001) was moderated by ethnicity (satisfaction, p = 0.050; trust, p = 0.066; self-efficacy, p = 0.075). No main effect of empathy nor moderation by ethnicity was found for anxiety (state anxiety: p = 0.284, p = 0.319; current anxiety: p = 0.357, p = 0.949). No main effects of ethnicity (satisfaction, p = 0.942; trust, p = 0.724; self-efficacy, p = 0.244; state anxiety, p = 0.812; current anxiety p = 0.523) were found.

In advanced cancer, non-Western patients might benefit most from empathy.

Dutch Trial Registration Number: NTR NL8992.

Effective communication with ill patients requires practice, yet, the traditional history overlooks patients' personal stories. This information is vital to determining goals of care and facilitates partnership by building trust.

We implemented a narrative medicine exercise for students during their palliative medicine rotation to highlight humanism. Impact was determined through thematic analysis of students' reflections.

Students elicited “what matters most” to patients, transcribing this plus a personal reflection. Using an inductive and iterative approach, 100 reflections were analyzed, developing codes then broader themes.

Four main themes (Getting to know the patient, Student Reaction, Building-blocks of patient-physician relationship, Student Personal Insights) were identified, with 15 subthemes.

The power of uncovering patients' backgrounds and values was demonstrated, reinforcing a palliative medicine approach. Analysis showed a positive impact and the possibility of change to future practice. The intervention was feasible, well received, and encouraged reflection on the physician-patient relationship beyond the medical domain.

To describe the delivery of palliative care by primary providers (PP) and specialist providers (SP) to hospitalized patients with COVID-19.

PP and SP completed interviews about their experiences providing palliative care. Results were analyzed using thematic analysis.

Twenty-one physicians (11 SP, 10 PP) were interviewed. Six thematic categories emerged. Care provision: PP and SP described their support of care discussions, symptom management, managing end of life, and care withdrawal. Patients provided care: PP described patients at end of life, with comfort-focused goals; SP included patients seeking life-prolonging treatments. Approach to symptom management: SP described comfort, and PP discomfort in providing opioids with survival-focused goals. Goals of care: SP felt these conversations were code status-focused. Supporting family: both groups indicated difficulties engaging families due to visitor restrictions; SP also outlined challenges in managing family grief and need to advocate for family at the bedside. Care coordination: internist PP and SP described difficulties supporting those leaving the hospital.

PP and SP may have a different approach to care, which may affect consistency and quality of care.

Physical medicine and rehabilitation (PM&R) clinicians commonly care for patients with serious illness/injury and would benefit from primary palliative care (PC) training.

To assess current practices, attitudes, and barriers toward PC education among U.S. PM&R residencies.

This is a cross-sectional study utilizing an electronic 23-question survey.

Subjects were program leaders from U.S. PM&R residency programs.

Twenty-one programs responded (23% response). Only 14 (67%) offered PC education through lectures, elective rotations, or self-directed reading. Pain management, communication, and nonpain symptom management were identified as the most important PC domains for residents. Nineteen respondents (91%) felt residents would benefit from more PC education, but only five (24%) reported undergoing curricular change. Lack of faculty availability/expertise and teaching time were the most endorsed barriers.

PC education is heterogeneous across PM&R programs despite its perceived value. PC and PM&R educators can collaborate to build faculty expertise and integrate PC principles into existing curricula.

Palliative care (PC) has been associated with reduced patient symptom burden, improved physician satisfaction, and reduced cost of care. However, its use in primary bone tumors has not been well classified.

Patients diagnosed with primary malignant bone tumors (osteosarcoma, chondrosarcoma, Ewing sarcoma, and chordoma) between 2004 and 2018 were identified in the National Cancer Database. Cross tabulations with chi-square analysis were performed to evaluate frequencies of PC use by patient, facility, and tumor characteristics. Multivariate logistic binary regression was performed to evaluate relationships between patient, treatment facility, and tumor characteristics and the use of PC.

Around 24,401 patients were identified. Overall, 2.52% had any form of PC utilization. Of those receiving PC, 55.5–65.1% were treated with only noncurative surgery, radiation, chemotherapy, or any combination of these modalities. Odds of PC utilization were decreased for patients with chordomas, patients living >24 miles from the treatment facility, or patients with private insurance, Medicare, or unknown insurance status. Odds of PC utilization were increased in patients with greater tumor diameter or unknown tumor size, tumors in midline, increased tumor grade, stage IV tumors, or living in urban areas.

PC use in patients with primary bone tumors increases with tumor stage, tumor grade, tumor size, and if the tumor is midline, and in patients living in urban areas. However, overall utilization remains markedly low. Future studies should be done to investigate these patterns of care and help expand the utilization of PC.

Epidermolysis bullosa (EB) comprises a group of rare genetic conditions that are characterized by fragility of the skin and mucous membranes and formation of blisters with minor trauma. Severe forms can be life limiting. The palliative care needs of children with severe EB are poorly described.

The aim of this case series was to examine the contribution of a pediatric palliative care service to the complex health care needs of children with severe EB.

We present a case series of five children with severe forms of EB who were known to the state-wide Victorian Paediatric Palliative Care Service, with a discussion of our learnings in caring for these children and their families.

Medical treatment decision making in EB provokes complex ethical, psychological, personal, and professional dilemmas. This case series highlights the diversity of management approaches that may be considered, each tailored to the unique context of the child and family.