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Navigating antibiotics at the end of life is a challenge for infectious disease (ID) physicians who remain deeply committed to providing patient-centered care and engaging in shared decision making. ID physicians, who often see patients in both inpatient and outpatient settings and maintain continuity of care for patients with refractory or recurrent infections, are ideally situated to provide guidance that aligns with patients' goals and values. Complex communication skills, including navigating difficult emotions around end-of-life care, can be used to better direct shared decision making and assist with antibiotic stewardship.
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Médicos , Assistência Terminal , Humanos , Antibacterianos/uso terapêutico , Morte , Tomada de Decisões , Pacientes Internados , Assistência Terminal/psicologiaRESUMO
PURPOSE: The authors sought to understand bereaved family preferences for end-of-life (EOL) care, particularly among Black families and those in the South. METHODS: Semi-structured interviews were conducted with parents of children who died of cancer ≥6 months before at Children's of Alabama. Themes were identified via content analysis. Quotes related to medical intensity, chemotherapy, and location of death (LOD) were scored on 5-point Likert scales, ranging from 1 (comfort care, chemotherapy, or home death) to 5 (medically intense care, avoidance of chemotherapy, or hospital death). RESULTS: Twenty-seven bereaved parents (12 Black) were interviewed. Children died at a mean of 13.1 years (SD = 6.1 years) and a median of 3 years before the interview (range = 1-12 years). Ten children (42%) had central nervous system tumors and the majority (63%) died in the hospital. Family decision-making involved maintaining hope, not causing harm, doing what was best for their child and themselves, and religious beliefs. There was no clear preference for home versus hospital death (3.0 [1.8-4.0]). Instead, parents considered their child's desires and/or medical needs, siblings, and prior experiences with death. To have a comfortable death, parents highlighted the need for comprehensive education about their child's EOL, a caring and comfortable environment, and 24/7 access to their care team. Families expressed a dual preference for comfort care (1.8 [1.3-2.8]) and chemotherapy (3.5 [2.7-4.1]) at EOL. CONCLUSIONS: Families did not see chemotherapy and comfort care as conflicting goals. They sought quality care emphasizing flexibility, quality time with their child, and open access to their care team, regardless of LOD.
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INTRODUCTION: Clinical guidelines and quality improvement initiatives have identified reducing the use of end-of-life cancer therapies as an opportunity to improve care. We examined the extent to which oncologists differed in prescribing systemic therapies in the last 30 days of life. METHODS: Using Surveillance, Epidemiology, and End Results-Medicare data, we identified patients who died of cancer from 2012 to 2017 (N = 17,609), their treating oncologists (N = 960), and the corresponding physician practice (N = 388). We used multilevel models to estimate oncologists' rates of providing cancer therapy for patients in their last 30 days of life, adjusted for patient characteristics and practice variation. RESULTS: Patients' median age at the time of death was 74 years (interquartile range, 69-79); patients had lung (62%), colorectal (17%), breast (13%), and prostate (8%) cancers. We observed substantial variation across oncologists in their adjusted rate of treating patients in the last 30 days of life: oncologists in the 95th percentile exhibited a 45% adjusted rate of treatment, versus 17% among the 5th percentile. A patient treated by an oncologist with a high end-of-life prescribing behavior (top quartile), compared to an oncologist with a low prescribing behavior (bottom quartile), had more than four times greater odds of receiving end-of-life cancer therapy (OR, 4.42; 95% CI, 4.00-4.89). CONCLUSIONS: Oncologists show substantial variation in end-of-life prescribing behavior. Future research should examine why some oncologists more often continue systemic therapy at the end of life than others, the consequences of this for patient and care outcomes, and whether interventions shaping oncologist decision-making can reduce overuse of end-of-life cancer therapies.
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BACKGROUND: The aim of this study was to describe the implementation of integrated palliative care (PC) and the intensity of care in the last 3 months before death for patients with metastatic breast cancer. MATERIALS AND METHODS: We conducted a multicentric study of all adult patients with metastatic breast cancer who died over a 4-month period. Complete data were collected and checked from clinical records, including PC interventions and criteria regarding EOL care aggressiveness. RESULTS: A total of 340 decedent patients from 12 comprehensive cancer centres in France were included in the study. Sixty-five percent met the PC team with a median time of 39 days between the first intervention and death. In the last month before death, 11.5% received chemotherapy, the frequency of admission to intensive care unit was 2.4%, and 83% experienced acute hospitalization. The place of death was home for 16.7%, hospitalization for 63.3%, PC unit for 20%. Univariate and multivariate analyses showed factors independently associated with a higher frequency of chemotherapy in the last month before death: having a dependent person at home, meeting for the first time with a PC teamâ <â 30 days before death, and time between the first metastasis and death below the median. CONCLUSION: PC team integration was frequent and late for patients with metastatic breast cancer. However, PC interventionâ >â 30 days is associated with less chemotherapy in the last month before death. Further studies are needed to better understand how to implement a more effective mode of PC integration for patients with metastatic breast cancer.
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Neoplasias da Mama , Cuidados Paliativos , Assistência Terminal , Humanos , Neoplasias da Mama/terapia , Neoplasias da Mama/patologia , Neoplasias da Mama/tratamento farmacológico , Neoplasias da Mama/mortalidade , Feminino , Cuidados Paliativos/métodos , Assistência Terminal/métodos , Assistência Terminal/normas , Pessoa de Meia-Idade , Idoso , Metástase Neoplásica , Adulto , França , Idoso de 80 Anos ou maisRESUMO
BACKGROUND: Given the typical trajectory of glioblastoma, many patients lose decision-making capacity over time, which can lead to inadequate advance care planning (ACP) and end-of-life (EOL) care. We aimed to evaluate patients' current ACP and EOL care status. PATIENTS AND METHODS: We conducted a cohort study on 205 patients referred to oncologists at a Korean tertiary hospital between 2017 and 2022. We collected information on sociodemographic factors, cancer treatment, palliative care consultation, ACP, legal documents on life-sustaining treatment (LST) decisions, and aggressiveness of EOL care. RESULTS: With a median follow-up time of 18.3 months: 159 patients died; median overall survival: 20.3 months. Of the 159 patients, 11 (6.9%) and 63 (39.6%) had advance directive (AD) and LST plans, respectively, whereas 85 (53.5%) had neither. Among the 63 with LST plans, 10 (15.9%) and 53 (84.1%) completed their forms through self-determination and family determination, respectively. Of the 159 patients who died, 102 (64.2%) received palliative care consultation (median time: 44 days from the first consultation to death) and 78 (49.1%) received aggressive EOL care. Those receiving palliative care consultations were less likely to receive aggressive EOL care (83.3% vs 32.4%, Pâ <â .001), and more likely to use more than 3 days of hospice care at EOL (19.6% vs 68.0%, Pâ <â .001). CONCLUSIONS: The right to self-determination remains poorly protected among patients with glioblastoma, with nearly 90% not self-completing AD or LST plan. As palliative care consultation is associated with less aggressive EOL care and longer use of hospice care, physicians should promptly introduce patients to ACP conversations and palliative care consultations.
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INTRODUCTION: The objective of this study was to comprehensively understand the burden experienced by caregivers (CGs) providing home-based, end-of-life care to patients with cancer. We examined the relationship between objective and subjective burden including whether and how burden changes over time. METHODS: A case series of terminal cancer patient-caregiver dyads (nâ =â 223) were recruited from oncology clinics and followed for 12 months or until patient death. Data were collected every other week and in-person from CGs in their homes using quantitative surveys, diaries, and monthly structured observations. RESULTS: Bivariate correlations revealed a significant association between subjective burden and activities of daily living (ADLs), instrumental activities of daily living (IADL), high-intensity tasks, and time spent on ADLs; these correlations varied over time. Models examining the slope of subjective burden revealed little systematic change; spouse caregiver and patient functional limitations were positively, and Black caregiver was negatively associated with subjective burden. Generally, the slopes for measures of objective burden were significant and positive. Models showed subjective burden was positively associated with most measures of objective burden both within caregiver (concurrent measures were positively associated) and between CGs (those with higher subjective also had higher objective). CONCLUSIONS: Cancer caregiving is dynamic; CGs must adjust to the progression of the patient's disease. We found an association between subjective and objective burden both within and between CGs. Black CGs were more likely to report lower subjective burden compared to their White counterparts. More detailed investigation of the sociocultural components that affect caregiver experience of burden is needed to better understand how and where to best intervene with targeted supportive care services.
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Atividades Cotidianas , Cuidadores , Neoplasias , Humanos , Neoplasias/psicologia , Masculino , Feminino , Cuidadores/psicologia , Cuidadores/estatística & dados numéricos , Pessoa de Meia-Idade , Idoso , Assistência Terminal/psicologia , Efeitos Psicossociais da Doença , Adulto , Sobrecarga do Cuidador/psicologia , Idoso de 80 Anos ou maisRESUMO
OBJECTIVE: To determine which groups of children with cancer for whom to apply the newly developed quality measures (QMs) for end-of-life (EOL) care. STUDY DESIGN: In a series of nominal groups, panelists answered the question: "Which children, diagnoses, conditions, or prognoses should be included when examining the quality of EOL care for children with cancer?" In each group, individual panelists proposed answers to the question. After collating individual responses, each panelist ranked their 5 top answers and points were assigned (5 pts for the best answer, 4 pts the second best, etc.). A team of pediatric oncology and palliative care clinician-scientists developed and applied a coding structure for responses and associated themes and subthemes for responses. RESULTS: We conducted 5 nominal groups with a total of 44 participants. Most participants identified as female (88%) and non-Hispanic White (86%). Seventy-nine percent were clinicians, mainly in pediatric palliative care, pediatric oncology, or hospice; 40% were researchers and 12% were bereaved parents. Responses fell into 5 themes: (1) poor prognosis cancer; (2) specific treatment scenarios; (3) certain populations; (4) certain symptoms; and (5) specific utilization scenarios. Poor prognosis cancer and specific treatment scenarios received the most points (320 pts [49%] and 147 pts [23%], respectively). CONCLUSIONS: Participants developed a framework to identify which children should be included in EOL QMs for children with cancer. The deliberate identification of the denominator for pediatric QMs serves as a potent tool for enhancing quality, conducting research, and developing clinical programs.
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Neoplasias , Cuidados Paliativos , Assistência Terminal , Humanos , Neoplasias/terapia , Assistência Terminal/normas , Feminino , Masculino , Criança , Cuidados Paliativos/normas , Qualidade da Assistência à SaúdeRESUMO
BACKGROUND: Minoritized individuals experience greater heart failure (HF) incidence and mortality rates, yet racial disparities in palliative care (PC) in HF are unknown. METHODS: This retrospective study used electronic medical records to identify adults who were hospitalized at an academic health system and died due to HF between 2012 and 2018. Using multivariable logistic regression, we examined associations between decedents' characteristics and PC consultations (PCCs). RESULTS: Of 1987 decedents, 45.8% (nâ¯=â¯911) received PCCs. Black decedents had 60% greater odds of receiving PCCs (ORâ¯=â¯1.60; 95% CIâ¯=â¯1.21-2.11) than whites. Median time from PCC to death was shorter among white than Black decedents (31.2 vs 51.5 days; Pâ¯=â¯.001). Mean age at death was younger among Black than white decedents (71.3 [14.8] vs 81.8 [12.3]; P < .001) and decedents of "other" races (71.3 [14.8] vs. 80.3 [10.4]; Pâ¯=â¯.001). Black decedents were more likely than whites to receive inotropes (54.4% vs 42.3%; P < .001) and to be admitted to hospitals (39.5% vs 29.7%; P < .001) and intensive care units in their last month (30.3% vs 18.3%; P < .001). CONCLUSIONS: Findings suggest greater recognition of palliative-care needs among Black individuals with HF; however, most referrals to PC occur late in the disease trajectory.
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BACKGROUND: Ethnically Chinese adults in Canada and the United States face multiple barriers in accessing equitable, culturally respectful care at the end-of-life. Palliative care (PC) is committed to supporting patients and families in achieving goal-concordant, high-quality serious illness care. Yet, current PC delivery may be culturally misaligned. Therefore, understanding ethnically Chinese patients' use of palliative care may uncover modifiable factors to sustained inequities at the end-of-life. OBJECTIVE: To compare the use and delivery of PC in the last year of life between ethnically Chinese and non-Chinese adults. DESIGN: Population-based cohort study. PARTICIPANTS: All Ontario adults who died between January 1st, 2012, and October 31st, 2022, in Ontario, Canada. EXPOSURES: Chinese ethnicity. MAIN MEASURES: Elements of physician-delivered PC, including model of care (generalist; specialist; mixed), timing and location of initiation, and type of palliative care physician at initial consultation. KEY RESULTS: The final study cohort included 527,700 non-Chinese (50.8% female, 77.9 ± 13.0 mean age, 13.0% rural residence) and 13,587 ethnically Chinese (50.8% female, 79.2 ± 13.6 mean age, 0.6% rural residence) adults. Chinese ethnicity was associated with higher likelihoods of using specialist (adjusted odds ratio [aOR] 1.53, 95%CI 1.46-1.60) and mixed (aOR 1.32, 95%CI 1.26-1.38) over generalist models of PC, compared to non-Chinese patients. Chinese ethnicity was also associated with a higher likelihood of PC initiation in the last 30 days of life (aOR 1.07, 95%CI 1.03-1.11), in the hospital setting (aOR 1.24, 95%CI 1.18-1.30), and by specialist PC physicians (aOR 1.33, 95%CI 1.28-1.38). CONCLUSIONS: Chinese ethnicity was associated with a higher likelihood of mixed and specialist models of PC delivery in the last year of life compared to adults who were non-Chinese. These observed differences may be due to later initiation of PC in hospital settings, and potential differences in unmeasured needs that suggest opportunities to initiate early, community-based PC to support ethnically Chinese patients with serious illness.
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BACKGROUND: Heart failure is a leading cause of death in the USA, contributing to high expenditures near the end of life. Evidence remains lacking on whether billed advance care planning changes patterns of end-of-life healthcare utilization among patients with heart failure. Large-scale claims evaluation assessing billed advance care planning and end-of-life hospitalizations among patients with heart failure can fill evidence gaps to inform health policy and clinical practice. OBJECTIVE: Assess the association between billed advance care planning delivered and Medicare beneficiaries with heart failure upon the type and quantity of healthcare utilization in the last 30 days of life. DESIGN: This retrospective cross-sectional cohort study used Medicare fee-for-service claims from 2016 to 2020. PARTICIPANTS: A total of 48,466 deceased patients diagnosed with heart failure on Medicare. MAIN MEASURES: Billed advance care planning services between the last 12 months and last 30 days of life will serve as the exposure. The outcomes are end-of-life healthcare utilization and total expenditure in inpatient, outpatient, hospice, skilled nursing facility, and home healthcare services. KEY RESULTS: In the final cohort of 48,466 patients (median [IQR] age, 83 [76-89] years; 24,838 [51.2%] women; median [IQR] Charlson Comorbidity Index score, 4 [2-5]), 4406 patients had an advance care planning encounter. Total end-of-life expenditure among patients with billed advance care planning encounters was 19% lower (95% CI, 0.77-0.84) compared to patients without. Patients with billed advance care planning encounters had 2.65 times higher odds (95% CI, 2.47-2.83) of end-of-life outpatient utilization with a 33% higher expected total outpatient expenditure (95% CI, 1.24-1.42) compared with patients without a billed advance care planning encounter. CONCLUSIONS: Billed advance care planning delivery to individuals with heart failure occurs infrequently. Prioritizing billed advance care planning delivery to these individuals may reduce total end-of-life expenditures and end-of-life inpatient expenditures through promoting use of outpatient end-of-life services, including home healthcare and hospice.
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BACKGROUND: Under traditional Medicare, accountability measures are specific to each healthcare setting. With the growth of alternative payment models such as Medicare Advantage, the focus of accountability measures can be on the longitudinal episode of care. OBJECTIVE: Using the last month of life as the episode of care, examine bereaved family member perceptions of the quality of care by site of death and inpatient palliative/hospice care. DESIGN: Retrospective cohort study using the National Health Aging Trends Study waves 3-11. SUBJECTS: US decedents age 65 and older with family member or close friend survey response. MAIN MEASURES: Overall rating of the quality of care, perceptions of symptom management, being treated with respect, emotional/spiritual support, communication, and receipt of care that the decedent did not want. KEY RESULTS: Among 2796 interviews (weighted N = 12.6 million), 25.7% died at home with hospice, 10.9% at home without hospice, 10.0% in the ICU, 6.4% at a palliative care unit (PCU), 6.4% at a hospice IPU, 9.1% at hospital without inpatient palliative care, 13.2% at a nursing home without hospice, 9.8% in a nursing home with hospice, 4.1% at a hospice residence, and 4.4% at other locations without hospice. Dying at home with hospice received the highest rating of quality of care (60.2% stated excellent care) while the adjusted marginal differences in sites of death with inpatient palliative care services were rated lower: hospice residence 25.6% points lower (95% CI (-13.7%, -37.5%)) and a freestanding IPU was 16.9% points lower (95% CI (- 4.9%, -29.0%)). CONCLUSION: Examining the episode of care as the last month of life, hospice at home is associated with higher rating of the quality of care while inpatient palliative care services in hospital, hospice residence, or hospice IPU settings are rated lower.
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Luto , Cuidados Paliativos , Qualidade da Assistência à Saúde , Assistência Terminal , Humanos , Cuidados Paliativos/normas , Masculino , Idoso , Feminino , Estudos Retrospectivos , Idoso de 80 Anos ou mais , Assistência Terminal/normas , Pacientes Internados , Estudos de Coortes , Cuidados Paliativos na Terminalidade da Vida/normas , Cuidados Paliativos na Terminalidade da Vida/estatística & dados numéricos , Estados Unidos , Hospitalização/estatística & dados numéricosRESUMO
The overall prognosis of older patients with acute myeloid leukemia (AML) is dismal. Only a small subgroup experiences long-term survival. The discrimination between patients who are candidates for potentially curative approaches and those who are not is crucial since - in addition to differences in terms of AML-directed treatment - different policies concerning intensive care unit (ICU) admission and involvement of specialized palliative care (SPC) seem obvious. To shed more light on characteristics, outcomes and health care utilization of older individuals with AML, we conducted an analysis comprising 107 consecutive patients with newly diagnosed AML aged ≥70 years treated at an academic tertiary care center in Germany between 1 January 2015, and 31 December 2020. Median age was 75 years (range: 70-87 years); 45% of patients were female. The proportion of patients receiving intensive induction chemotherapy was 35%, 55% had low-intensity treatment and 10% did not receive AML-directed treatment or follow-up ended before treatment initiation. At least one ICU admission was documented for 47% of patients; SPC was involved in 43% of cases. Median follow-up was 199 days. The median overall survival (OS) was 2.5 months; the 1-year OS rate was 16%. Among patients who died during observation, the median proportion of time spent in the hospital between AML diagnosis and death was 56%. The most common places of death were normal wards (31%) and the ICU (28%). Patients less frequently died in a palliative care unit (14%) or at home (12%). In summary, results of the present analysis confirm the unfavorable prognosis of older patients with AML despite intensive health care utilization. Future efforts in this patient group should aim at optimizing the balance between appropriate AML-directed treatment on the one hand and health care utilization including ICU stays on the other hand.
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Leucemia Mieloide Aguda , Humanos , Idoso , Feminino , Masculino , Leucemia Mieloide Aguda/terapia , Leucemia Mieloide Aguda/mortalidade , Idoso de 80 Anos ou mais , Estudos Retrospectivos , Aceitação pelo Paciente de Cuidados de Saúde/estatística & dados numéricos , Prognóstico , Taxa de Sobrevida , Resultado do Tratamento , Cuidados Paliativos/estatística & dados numéricosRESUMO
OBJECTIVES: Malignant large bowel obstruction (LBO) is a frequent complication affecting women with gynecologic cancers and is an indication for emergent surgery. However, the life expectancy and subsequent medical care utilization are unknown. We sought to estimate overall survival (OS) following colostomy and describe subsequent healthcare utilization among patients with advanced gynecologic malignancies. METHODS: We conducted a retrospective analysis of patients with advanced gynecologic cancers who underwent colostomy with palliative intent due to LBO at our institution between March 2014 and January 2023. Summary statistics were used to describe the clinical and demographic characteristics of the study population. OS was estimated using the Kaplan-Meier method, and we defined healthcare utilization at the end-of-life using criteria published by the National Quality Forum. RESULTS: A total of 78 patients were included. The median age at the time of surgery was 61 (range: 34-83), and most patients had recurrent ovarian, fallopian tube, or primary peritoneal cancer (n = 51, 65.4%), followed by cervical cancer (n = 16, 20.5%), and uterine cancer (n = 10, 12.8%). The median Charlson comorbidity index was 3 and median postoperative length of stay was five days (range: 1-26). The median follow-up for all patients was 4.5 months (range: 0.07-46.2), and the median OS was 4.5 months (95% CI: 2.9-6.0), including 12 patients (15.4%) with <30-day OS and 21 (26.9%) with <60-day OS. In the last 30 days of life, 62.7% of patients were re-admitted to the hospital, 53.0% were seen in the emergency department, and 18.5% were admitted to an intensive care unit. CONCLUSIONS: A significant proportion of patients died within 60 days of surgery, and many had high healthcare utilization at the end of life.
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INTRODUCTION: Patients with hematologic malignancies (HMs) often face challenges in accessing palliative care (PC) and receiving quality end-of-life (EOL) care. We examined factors associated with referrals to tertiary PC and the effects of tertiary PC on EOL care in patients with HMs. METHOD: We included patients with HMs who were admitted to a university-affiliated hospital and died during hospitalization between January 2018 and December 2021. We investigated the receipt of PC consultations, patient characteristics, and EOL care indicators. RESULTS: Overall, 487 patients were included in the analysis, with 156 (32%) undergoing PC consultation. Sex, residence, disease status, and admission purpose were factors associated with the likelihood of PC consultation, and there has been an increasing trend in the frequency of consultations in recent cases. A higher proportion of patients who received PC completed advance statements and life-sustaining treatment documents. Patients who received PC had lower rates of aggressive EOL care, including chemotherapy and intensive care unit admission, than those who did not receive PC. Notably, PC reduced the number of blood transfusions. CONCLUSION: Tertiary PC aims to reduce aggressive EOL care through patient-centered goal-of-care discussions. Therefore, there is an imperative need for concerted efforts toward seamless integration of PC.
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Neoplasias Hematológicas , Cuidados Paliativos na Terminalidade da Vida , Neoplasias , Assistência Terminal , Humanos , Cuidados Paliativos , Neoplasias Hematológicas/diagnóstico , Neoplasias Hematológicas/epidemiologia , Neoplasias Hematológicas/terapia , República da Coreia/epidemiologia , Estudos Retrospectivos , Neoplasias/terapiaRESUMO
OBJECTIVES: Insufficient preparedness for bereavement can affect a family's psychological health status after bereavement. However, factors associated with preparedness remain unclear. This study aimed to identify factors associated with preparedness for bereavement in families of patients with cancer. METHODS: We conducted a secondary analysis of a nationwide bereaved family survey in Japan, analyzing data from 9123 family members of patients with cancer. Logistic regression analysis was conducted to explore how sociodemographic factors, health status, and perceived care for patients and families were associated with preparedness for bereavement. RESULTS: Of the 9123 families, 1338 (15.1%) were not prepared for bereavement. Factors associated with insufficient preparedness for bereavement (all p < 0.001) were found as follows: patients' spouses (OR = 2.54), receiving care in acute hospitals (OR = 1.83), worse psychological health status during caregiving (OR = 2.13), lower social support for family members (OR = 1.90), wrong patients' awareness of medical condition from family's perspective (OR = 1.75-2.12), family preference of more aggressive treatment rather than palliative care (OR = 1.71) or not sure (OR = 2.31), not wanting to know information about the patient's prognosis (OR = 1.64-1.77), end-of-life discussion with physician 1 month before patient's death (OR = 1.45), and late or early end-of-life discussions with physician and family (OR = 1.78-1.95). CONCLUSIONS: This study's results might assist clinicians in assessing and identifying families who are not prepared for bereavement; however, preparedness for bereavement may have been associated with other factors.
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Luto , Neoplasias , Assistência Terminal , Humanos , Pesar , Cuidados Paliativos , Neoplasias/terapia , Neoplasias/psicologia , MorteRESUMO
OBJECTIVE: To deliver and evaluate an educational intervention to equip health and social care professionals (professionals) on how best to support parents at end of life with cancer concerning their dependent children (<18). METHODS: An evidence-based and theory-driven face-to-face educational intervention was developed and evaluated using three levels of Kirkpatrick's Model of Evaluation. Pre-test, post-test surveys were completed immediately before-and-after the intervention using a validated self-efficacy scale and single-item questions evaluating perceived usefulness and relevance (levels one/two). Qualitative interviews ≥ 3-months post-intervention explored if, and how the intervention impacted professionals' practice (level three). Fourteen sessions were delivered at oncology settings to 347 professionals between 2021 and 2023. Two hundred seventy four professionals completed the pre-test survey, with 239 completing the post-test survey. Fourteen professionals were interviewed between three-and 19-months post-intervention. RESULTS: Quantitative findings demonstrated a statistically significant improvement in self-efficacy post-educational intervention (p < 0.001). Qualitative data highlighted professionals gained new approaches to progress end of life conversations with parents, despite some familial resistance to sharing the reality of the situation with children. Positive intervention content shaping clinical practice included the bereaved parent's lived experience, communication framework and roleplay videos. Some professionals considered a booster session and opportunities to practice conversations necessary to further consolidate learning into practice. CONCLUSIONS: Evidence and theory-driven education can positively impact professionals' provision of family-centred cancer care. Future studies should explore the impact of this educational intervention on familial outcomes. Alongside a sustainable delivery of this intervention, advanced communication skills programmes should incorporate parent-child end of life conversations.
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Pessoal de Saúde , Neoplasias , Pais , Assistência Terminal , Humanos , Neoplasias/psicologia , Neoplasias/terapia , Pessoal de Saúde/educação , Pessoal de Saúde/psicologia , Pais/psicologia , Pais/educação , Assistência Terminal/psicologia , Masculino , Feminino , Criança , Adulto , Autoeficácia , Pesquisa Qualitativa , Inquéritos e Questionários , Comunicação , Relações Profissional-FamíliaRESUMO
OBJECTIVES: This study aimed to evaluate the impact of the National Institute for Health and Care Excellence's (NICE) new severity modifier, which has replaced the end-of-life (EoL) premium, on future NICE recommendations, considering past decision-making patterns. METHODS: NICE technology appraisals (TAs) published between January 2020 and December 2022 were reviewed. Summary statistics were generated to assess how the new severity modifier might affect hypothetical decision making in historical TAs. RESULTS: A total of 138 data points were identified from 132 TAs. Although the EoL premium was applied in 46 appraisals (33%), 57 (39%) qualify for a severity-based quality-adjusted life-year (QALY) multiplier. Only 19 appraisals (14.6%) not receiving an EoL premium met the severity criteria, the majority (17) qualifying for a 1.2× multiplier. In appraisals predicted to meet the severity criteria, 45 (79%) were in oncology, making them 4.04 times (95% CI 1.91-9.02) more likely to qualify for a severity modifier than nononcology indications. Among historically EoL indications, 42 (91%) were predicted to meet the severity criteria, making them 14.8 times (95% CI 6.37-37.6) more likely to qualify for a severity modifier. CONCLUSIONS: The new severity modifier will predominantly benefit oncology indications, continuing their previous explicit prioritization under the EoL decision modifier. However, the new severity modifier is harder to achieve and less generous; only a fraction of appraisals qualify for the highest effective £51 000 per QALY threshold. The vast majority of indications previously approved at £50 000 per QALY would now need to meet a cost-effectiveness threshold of <£36 000. This may necessitate greater pricing flexibility from manufacturers and increase the likelihood of negative recommendations.
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Análise Custo-Benefício , Tomada de Decisões , Anos de Vida Ajustados por Qualidade de Vida , Avaliação da Tecnologia Biomédica , Humanos , Reino Unido , Índice de Gravidade de Doença , Acessibilidade aos Serviços de Saúde/economia , Assistência Terminal/economia , Medicina EstatalRESUMO
BACKGROUND: Legacy-oriented interventions have the potential to offer pediatric oncology patients and families comfort at end of life and during bereavement. Certified child life specialists often provide these services, and presently little is known about whether disparities exist in the provision of legacy-oriented interventions. METHODS: In this retrospective decedent cohort study, we examined demographic and clinical characteristics from a sample of 678 pediatric oncology patients who died between 2015 and 2019. Bivariate analysis assessed differences between patients who received any versus no legacy-oriented intervention. Uni- and multivariable logistic regression models assessed associations of baseline characteristics and likelihood of receiving legacy-oriented intervention. Further multivariable analysis explored joint effects of significant variables identified in the univariable analysis. RESULTS: Fifty-two percent of patients received a legacy-oriented intervention. Older adolescents (≥13 years) were less likely (odds ratio [OR]: 1.73, p = .007) to receive legacy-oriented interventions than younger ones. Patients with home/hospice deaths were also less likely (OR: 19.98, p < .001) to receive interventions compared to patients who passed away at SJCRH locations. Hispanic patients (OR: 1.53, p = .038) and those in palliative care (OR: 10.51, p < .001) were more likely to receive interventions. No significant race association was noted. CONCLUSION: All children and adolescents with cancer deserve quality care at end of life, including access to legacy-oriented interventions, yet nearly half of patients in this cohort did not receive these services. By identifying demographic and clinical characteristics associated with decreased odds of receiving legacy-oriented interventions, healthcare professionals can modify end-of-life care processes to improve access. Introducing legacy-oriented interventions early and increasing exposure in community spaces may enhance access to legacy-oriented interventions for pediatric oncology patients.
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Neoplasias , Assistência Terminal , Humanos , Masculino , Feminino , Criança , Adolescente , Estudos Retrospectivos , Neoplasias/terapia , Neoplasias/mortalidade , Pré-Escolar , Lactente , Acessibilidade aos Serviços de Saúde , Cuidados Paliativos , Seguimentos , Recém-Nascido , Prognóstico , Oncologia , LutoRESUMO
OBJECTIVES: Older adults with psychiatric illnesses often have medical comorbidities that require symptom management and impact prognosis. Geriatric psychiatrists are uniquely positioned to meet the palliative care needs of such patients. This study aims to characterize palliative care needs of geriatric psychiatry patients and utilization of primary palliative care skills and subspecialty referral among geriatric psychiatrists. METHODS: National, cross-sectional survey study of geriatrics psychiatrists in the United States. RESULTS: Respondents (n = 397) reported high palliative care needs among their patients (46-73% of patients). Respondents reported using all domains of palliative care in their clinical practice with varied comfort. In multivariate modeling, only frequency of skill use predicted comfort with skills. Respondents identified that a third of patients would benefit from referral to specialty palliative care. CONCLUSIONS: Geriatric psychiatrists identify high palliative care needs in their patients. They meet these needs by utilizing primary palliative care skills and when available referral to subspecialty palliative care.
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Transtornos Mentais , Psiquiatria , Humanos , Estados Unidos , Idoso , Cuidados Paliativos/métodos , Cuidados Paliativos/psicologia , Estudos Transversais , Psiquiatria GeriátricaRESUMO
Additive manufacturing (AM) offers a variety of material manufacturing techniques for a wide range of applications across many industries. Most efforts at process optimization and exposure assessment for AM are centered around the manufacturing process. However, identifying the material allocation and potentially harmful exposures in end-of-life (EoL) management is equally crucial to mitigating environmental releases and occupational health impacts within the AM supply chain. This research tracks the allocation and potential releases of AM EoL materials within the US through a material flow analysis. Of the generated AM EoL materials, 58% are incinerated, 33% are landfilled, and 9% are recycled by weight. The generated data set was then used to examine the theoretical occupational hazards during AM EoL material management practices through generic exposure scenario assessment, highlighting the importance of ventilation and personal protective equipment at all stages of AM material management. This research identifies pollution sources, offering policymakers and stakeholders insights to shape pollution prevention and worker safety strategies within the US AM EoL management pathways.