Social Deprivation and End-of-Life Care Use Among Adults With Cancer.

PURPOSE: Socioeconomic differences are partially responsible for racial inequities in cancer outcomes, yet the association of area-level socioeconomic disadvantage and race with end-of-life (EOL) cancer care quality is poorly understood. METHODS: This retrospective study used electronic medical records from an academic health system to identify 33,635 adults with cancer who died between 2013 and 2019. Using multivariable logistic regression, we examined associations between decedent characteristics and EOL care, including emergency department (ED) visits, intensive care unit (ICU) stays, palliative care consultation (PCC), hospice order, and in-hospital deaths. Social deprivation index was used to measure socioeconomic disadvantages. RESULTS: Racially minoritized decedents had higher odds of ICU stay than the least deprived White decedents (eg, other race Q3: aOR, 2.06 [99% CI, 1.26 to 0.3.39]). White and Black decedents from more deprived areas had lower odds of ED visit (White Q3: aOR, 0.382 [99% CI, 0.263 to 0.556]; Black Q3: aOR, 0.566 [99% CI, 0.373 to 0.858]) than least deprived White decedents. Compared with White decedents living in least deprived areas, racially minoritized decedents had higher odds of receiving PCC and hospice order, whereas White decedents in most deprived areas had lower odds of PCC (aOR, 0.727 [99% CI, 0.592 to 0.893]) and hospice order (aOR, 0.845 [99% CI, 0.724 to 0.986]). Greater deprivation was associated with greater odds of hospital death relative to least deprived White decedents, but only among minoritized decedents (eg, Black Q4: aOR, 2.16 [99% CI, 1.82 to 2.56]). CONCLUSION: Area-level socioeconomic disadvantage is not uniformly associated with poorer EOL cancer care, with differences among decedents of different racial groups.

Advance Care Planning in the Geriatrics Clinic.

Advance care planning (ACP) is a process that allows individuals to express their health-care preferences and make decisions about their future medical care. Clinicians practicing in a Geriatrics clinic or with many patients who are aged 65 years or older have a unique opportunity to discuss patients' goals of care. ACP is particularly important for older adults, who may be facing serious health issues and/or end-of-life decisions. This review article will provide an overview of the importance of ACP in the geriatrics clinic, discuss the barriers to implementation, and explore strategies for successful integration..

Psychedelics and Related Pharmacotherapies as Integrative Medicine for Older Adults in Palliative Care.

Psychological distress at the end of life is a common experience that lacks effective treatments. This is in part due to the multidimensional nature of psychological distress at the end of life, encompassing an interplay between psychosocial and existential distress as well as physical symptom burden. Research shows that psychedelic-assisted therapy is an effective treatment of end of life distress. Ketamine and cannabis may help with quick and effective treatment of symptom burden at the end of life. Although these novel interventions show promise, further data is needed, particularly in elderly populations.

Early Palliative Care for the Geriatric Patient with Cancer.

Older adults with cancer present with complex multidimensional problems. Therefore, early integration of palliative care for the older adult with cancer is important, and a multidisciplinary team approach is critical for optimum care. The importance of incorporating geriatric and palliative concerns in assessment, as well as early involvement of the multidisciplinary team, is discussed as a manner of addressing the needs of older adults with cancer. Concerns related to metabolic changes that can occur with aging, as well as risk for polypharmacy and inappropriate prescribing for older adults, are also reviewed.

A Web-Based Dyadic Intervention to Manage Psychoneurological Symptoms for Patients With Colorectal Cancer and Their Caregivers: Protocol for a Mixed Methods Study.

BACKGROUND: Patients with colorectal cancer (CRC) receiving chemotherapy often experience psychoneurological symptoms (PNS; ie, fatigue, depression, anxiety, sleep disturbance, pain, and cognitive dysfunction) that negatively impact both patients' and their caregivers' health outcomes. Limited information is available on PNS management for CRC patient and caregiver dyads. OBJECTIVE: The purposes of this study are to (1) develop a web-based dyadic intervention for patients with CRC receiving chemotherapy and their caregivers (CRCweb) and (2) evaluate the feasibility, acceptability, and preliminary effects of CRCweb among patient-caregiver dyads in a cancer clinic. METHODS: A mixed methods approach will be used. Semistructured interviews among 8 dyads will be conducted to develop CRCweb. A single-group pre- and posttest clinical trial will be used to examine the feasibility, acceptability, and preliminary effects of the intervention (CRCweb) among 20 dyads. Study assessments will be conducted before (T1) and after intervention (T2). Content analysis will be performed for semistructured interviews. Descriptive statistics will be calculated separately for patients and caregivers, and pre-post paired t tests will be used to evaluate treatment effects. RESULTS: This study was funded in November 2022. As of April 2023, we have obtained institutional review board approval and completed clinical trial registration and are currently recruiting patient-caregiver dyads in a cancer clinic. The study is expected to be completed in October 2024. CONCLUSIONS: Developing a web-based dyadic intervention holds great promise to reduce the PNS burden in patients with CRC receiving chemotherapy and their caregivers. The findings from this study will advance intervention development and implementation of symptom management and palliative care for patients with cancer and their caregivers. TRIAL REGISTRATION: ClinicalTrials.gov NCT05663203; https://clinicaltrials.gov/ct2/show/NCT05663203. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/48499.

Ambulatory palliative care among patients with hidradenitis suppurativa: A qualitative study.

Background: Patients with hidradenitis suppurativa (HS) experience high physical and emotional symptom burden and may benefit from palliative care interventions, though no studies have explored the unmet palliative care needs in this population. Objective: This case series aimed to qualitatively evaluate unmet needs and palliative care interventions among patients with HS who were referred to palliative care. Methods: We reviewed medical records of patients with HS who were referred from an HS specialty clinic and seen in an interprofessional palliative care ambulatory clinic. Palliative care notes were qualitatively analyzed inductively and deductively to identify themes characterizing unmet needs and palliative care interventions. Results: Thirteen patients with HS (median [IQR] age, 38 [31-45] years; 11 [85%] women; 11 [85%] Black) were referred and seen in a palliative care specialty clinic. Topics discussed included uncontrolled HS pain, housing insecurity, and emotional distress. Palliative care interventions included a thorough assessment of pain, multimodal pain management approaches, social worker weekly check-ins, and management of psychotropic medications. Limitations: Small study at a single tertiary center. Conclusions: Care models integrating palliative care approaches with multidisciplinary support services may reduce disease burden in a subset of patients with HS.

Pain experiences among those living with hidradenitis suppurativa: a qualitative study.

BACKGROUND: Pain is rated by patients with hidradenitis suppurativa (HS) as the disease's most impactful symptom. HS therapies are often insufficient to control inflammatory disease activity and pain. A better understanding of patient experiences with pain may improve patient-provider relationships and help identify strategies for addressing HS pain. OBJECTIVES: This qualitative study sought to characterize lived pain experiences of those with HS. METHODS: English-speaking patients ≥ 18 years old with a dermatologist-confirmed diagnosis of HS and an average numerical rating scale pain score of ≥ 1 over the preceding week were recruited from a single academic medical centre in Atlanta, Georgia, USA. Semistructured interviews were conducted from November 2019 to March 2020 to explore participants' HS pain experiences and the subsequent impact on their lives. Thematic saturation was reached after interviewing 21 participants. Interviews were audio recorded, transcribed, and analysed using thematic analysis. RESULTS: Among 21 study participants, the median 7-day average pain score was 6 (interquartile range 3-7; scale ranges from 0 to 10, with 10 being most pain). Participants' descriptions of pain were consistent with nociceptive pain, neuropathic pain and itch. Pain impacted multiple life domains, including physical limitations (decreased mobility and impaired sleep), decreased psychological wellbeing (irritability, depression, loss of control, and difficulty communicating pain experiences) and impaired social relationships (social isolation, intimacy problems and difficulty fulfilling social responsibilities). Although participants reported chronic discomfort, acutely painful and unpredictable HS disease flares caused more distress and quality-of-life (QoL) burden. Participants frequently treated their pain without input from the medical team, sometimes with unsafe medication doses or combinations. Factors contributing to self-management of pain included difficulty accessing timely outpatient care during disease flares and fear of stigma from healthcare providers. CONCLUSIONS: When present, HS-related pain may impact not only physical wellbeing but also mental health and relationships. In addition to therapies that target the inflammatory disease burden, treating the symptom of pain may improve patients' QoL and wellbeing. Because patients with HS have difficulty explaining their pain, proactively asking them about pain may identify unmet needs, facilitate better pain control and improve QoL. Further, the influence of HS-related pain on numerous aspects of QoL suggests the need for multidisciplinary, patient-centred approaches to HS pain management.

Financial Hardship and Quality of Life Among Patients With Advanced Cancer Receiving Outpatient Palliative Care: A Pilot Study.

BACKGROUND: Patients with advanced cancer are increasingly experiencing financial hardship (FH) and associated negative health outcomes. OBJECTIVE: The aims of this study were to describe FH and explore its relationship to quality of life (QOL) in patients with advanced cancer receiving outpatient palliative care (PC). METHODS: Validated questionnaires assessed FH, QOL dimensions, symptom burden, and sociodemographic and clinical characteristics. Descriptive statistics characterized the sample and described FH. Pearson correlation and linear regression assessed relationships between FH and QOL. RESULTS: The average participant (n = 78) age was 56.6 (SD, 12.2) years. Most were female (56.4%), White (50%) or Black (46.2%), and had a range of education, partner statuses, and cancer diagnoses. Median time since cancer diagnosis was 35.5 months (interquartile range, 9-57.3 months). Highest mean symptom burden scores were for pain (2.5 [SD, 1.0]) and fatigue (2.0 [SD, 1.1]), on a 0- to 3-point scale (higher score representing worse symptom burden). The median COST (COmphrehensive Score for financial Toxicity) score was 15.0 (interquartile range, 9.0-23.0). Most (70%) had some (n = 43) or extreme (n = 9) difficulty paying for basic needs. Greater than 28% (n = 21) incurred cancer-related debt. Multivariate models indicated that FH negatively affected role limitations due to physical health ( P = .008), pain ( P = .003), and emotional well-being ( P = .017) QOL dimensions. CONCLUSIONS: Financial hardship, QOL, and symptom burden scores demonstrate need for continued support for and research among patients with advanced cancer. Data support links between FH and important QOL dimensions. Larger, longitudinal studies are needed to understand how FH affects QOL in patients with advanced cancer. IMPLICATIONS FOR PRACTICE: Proactive financial assessment and interventions are needed to support patients with advanced cancer experiencing the cumulative effects of cancer and its treatment.

Integrating specialist palliative care to improve care and reduce suffering: cystic fibrosis (InSPIRe:CF) - study protocol for a multicentre randomised clinical trial.

INTRODUCTION: Cystic fibrosis (CF) is a life-limiting genetic disorder estimated to affect more than 160 000 individuals and their families worldwide. People living with CF commonly experience significant physical and emotional symptom burdens, disruptions to social roles and complex treatment decision making. While palliative care (PC) interventions have been shown to relieve many such burdens in other serious illnesses, no rigorous evidence exists for palliative care in CF. Thus, this study aims to compare the effect of specialist palliative care plus usual CF care vs usual CF care alone on patient quality of life. METHODS AND ANALYSIS: This is a five-site, two-arm, partially masked, randomised superiority clinical trial. 264 adults with CF will be randomly assigned to usual CF care or usual CF care plus a longitudinal palliative care intervention delivered by a palliative care specialist. The trial's primary outcome is patient quality of life (measured with the Functional Assessment of Chronic Illness Therapy-Palliative care instrument). Secondary outcomes include symptom burden, satisfaction with care and healthcare utilisation. Outcomes will be measured at 12 months (primary endpoint) and 15 months (secondary endpoint). In addition, we will conduct qualitative interviews with patient participants, caregivers, and palliative care and CF care team members to explore perceptions of the intervention's impact and barriers and facilitators to dissemination. ETHICS AND DISSEMINATION: Human subjects research ethics approval was obtained from all participating sites, and all study participants gave informed consent. We will publish the results of this trial in a peer-reviewed journal. TRIAL REGISTRATION NUMBER: ISRCTN53323164.

Integrated Medical Cannabis Consultations in a Palliative Care Program: Policies, Procedures, and Progress after Six Years of Practice.

Introduction: Our academic ambulatory palliative care program has counseled, monitored, and certified patients for cannabis as part of routine palliative care practice for six years. Objective: We describe the population certified for cannabis and policies, procedures, and medicolegal challenges in our palliative care clinic. Methods: We performed a retrospective review of patients, qualifying diagnoses for cannabis certification, reasons for referral, and number of annual certifications. Results: Between 2015 and 2021, we certified 1711 patients for cannabis. The most common indications were cancer (64%), pain (24%), and neuropathy (9%). Other three months in 2021, 28% of new referrals to our practice were certified for cannabis and 15% of patients were referred explicitly for cannabis certification. Conclusion: Despite legal and practical challenges to implementing a medical cannabis program, our palliative care program has fully integrated cannabis as part of our standard outpatient clinical practice.

Application of Critical Race Theory in Palliative Care Research: A Scoping Review.

CONTEXT: Structural racism negatively impacts individuals and populations. In the medical literature, including that of palliative care, structural racism's influence on interracial differences in outcomes remains poorly examined. Examining the contribution of structural racism to outcomes is paramount to promoting equity. OBJECTIVES: We examined portrayals of race and racial differences in outcomes in the palliative care literature and created a framework using critical race theory (CRT) to aid in this examination. METHODS: We reviewed the CRT literature and iteratively developed a rubric to examine when and how differences between races are described. Research articles published in The Journal of Pain and Symptom Management presenting empiric data specifically including findings about racial differences were examined independently by three reviewers using the rubric. RESULTS: Fifty-seven articles met inclusion criteria. Articles that specifically described racial differences were common in the topic areas of quality (75% of articles), hospice (53%), palliative care services (40%) and spirituality/religion (40%). The top three reasons posited for racial differences were patient preference (26%), physician bias (23%), and cultural barriers (21%). Using the CRT rubric we found that 65% of articles posited that a racial difference was something that needed to be rectified, while articles rarely provided narrative (5%) or other data on perspectives of people of color (11%) to explain assumptions about differences. CONCLUSION: Palliative care research frequently highlights racial differences in outcomes. Articles that examine racial differences often assume that differences need to be fixed but posit reasons for differences without the narratives of those most affected by them.

A dose-escalation clinical trial of intranasal ketamine for uncontrolled cancer-related pain.

STUDY OBJECTIVE: The objective of our study was to determine safety and pharmacology (pharmacokinetics and preliminary efficacy) of intranasal (IN) ketamine for uncontrolled cancer-related pain. DESIGN: Dose escalation clinical trial. SETTING: Outpatient. PATIENTS: Ten adult patients with uncontrolled cancer-related pain. INTERVENTION: Each patient received escalating doses of ketamine over four visits, each 2-5 days apart: 10 mg IN at visit 1, 10 mg intravenous (IV) at visit 2, 30 mg IN at visit 3, and 50 mg IN at visit 4. MEASUREMENTS: Pain was measured before and after drug administration for up to 4 h using the 11 point (0-10) Numerical Pain Rating Scale (NPRS). MAIN RESULTS: All subjects had advanced cancer, with intractable pain, despite being on moderate dosage of opioids. There was a statistically significant reduction in median NPRS by 1.5 (1-4), 3 (2-3), and 4 (3-5) points at 60 min after receiving the medication and remained decreased by 1.5 (1-2), 2 (1-2) and 1 (1-4) points at the end of the study visit (240 min) with the 10 mg, 30 mg and 50 mg IN dosage, respectively. The median percentage of maximal pain relief being 22.5 (16.6-71.5), 65.5 (40-100), and 69.25 (50-100) for 10 mg, 30 mg and 50 mg IN dosage, respectively and 100 (75-100) with 10 mg IV dose. All side effects (nausea and feeling of unreality) resolved by the end of each study visit. No severe adverse events occurred. CONCLUSION: In this single-institution study, all dosages of IN ketamine administered in the study (10, 30, and 50 mg) provided significant pain relief for intractable cancer-related pain and were well tolerated. The 50 mg dose provided maximal pain relief without major side effects. Further study focused on repeated administration efficacy and safety for cancer-related pain is warranted.

National estimates of mental health service use and unmet needs among adult cancer survivors.

BACKGROUND: Cancer survivors are at elevated risk for developing mental health (MH) disorders. This study assessed MH service use and unmet service needs among a nationally representative sample of cancer survivors. METHODS: Respondents aged 18 to 64 years were identified from the 2015-2018 National Survey of Drug Use and Health data. Outcomes assessed past-year MH service use and self-reported unmet MH needs. Outcomes were compared between respondents who reported a cancer history (survivors) and those who did not (controls), descriptively and in adjusted analyses controlling for sociodemographic factors and health status. Analyses were stratified by age groups (18-34, 35-49, and 50-64 years). RESULTS: Comparing 3540 survivors with 149,843 controls, within each age group, a higher proportion of survivors than controls received any MH service (P values < .05); this difference persisted among those aged 35 to 49 years (P = .004) in fully adjusted models. Moreover, a higher proportion of survivors than controls reported an unmet need for MH care; this difference was larger among young adults aged 18 to 34 years (20.8% vs 9.0%; P < .001) than those aged 35 to 49 years (9.4% vs 5.3%; P < .001) and 50 to 64 years (4.8% vs 3.4%; P = .029). In fully adjusted models, the survivor-control difference in self-reported unmet MH needs persisted among young adults (24% relative increase; P = .023). Among cancer survivors, young adult survivors had the highest likelihood of reporting unmet MH needs. CONCLUSIONS: This nationally representative study found an increased perception of unmet needs for MH care among cancer survivors, particularly among young adult survivors, compared with the general population without cancer.

Rehabilitation Concerns in the Geriatric Critically Ill and Injured - Part 1.

Elderly patients who are critically ill have unique challenges that must be considered when attempting to prognosticate survival and determine expectations for physical rehabilitation and meaningful recovery. Furthermore, frail elderly patients present unique rehabilitation and clinical challenges when suffering from critical illness. There are multiple symptoms and syndromes that affect morbidity and mortality of elderly patients who require intensive care unit management including delirium, dementia, pain, and constipation. Rehabilitation goals should be based on patient values, clinical course, and functional status. Patients and families need accurate prognostic information to choose the appropriate level of care needed after critical illness.

Will You Hear Me? Have You Heard Me? Do You See Me? Adding Cultural Humility to Resource Allocation and Priority Setting Discussions in the Care of African American Patients With COVID-19.

The coronavirus disease 2019 (COVID-19) pandemic has refocused our attention on health care disparities affecting patients of color, with a growing body of literature focused on the etiology of these disparities and strategies to eliminate their effects. In considering the unique impact COVID-19 is having on African American communities, added measure must be given to ensure for sensitivity, empathy, and supportive guidance in medical decision making among African American patients faced with critical illness secondary to COVID-19. In this article, we explore the applications of cultural humility over cultural competency in optimizing the care we provide to African American patients faced with critical health care decisions during this pandemic. In turn, we charge one another as health care providers to consider how ethical principles and guidance can be applied to honor African American patients' unique stories and experiences.

Pain Management in Patients with Serious Illness.

Managing pain in patients with serious illness can be complex. However, pain is often a prominent symptom in patients with malignant and nonmalignant serious illness and providers have to be adept at balancing effective pain management and safety. Clinicians should start with a standard pain assessment that lays important groundwork for developing a tailored multimodal approach to pain management. It is important to identify physical causes of pain and also existential causes. Opioids are not always appropriate but are still an important tool for managing pain. Basic opioid management and safe practices are essential when managing this population.