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1.
Article in Spanish | LILACS-Express | LILACS | ID: biblio-1535343

ABSTRACT

Introducción: La esclerosis lateral amiotrófica (ELA) es la forma más común de enfermedad degenerativa de motoneurona en la edad adulta y es considerada una enfermedad terminal. Por lo mismo, el accionar del fonoaudiólogo debe considerar el respeto a los principios bioéticos básicos para garantizar una asistencia adecuada. Objetivo: Conocer aquellas consideraciones bioéticas relacionadas al manejo y estudio de personas con ELA para luego brindar una aproximación hacia el quehacer fonoaudiológico. Método: Se efectuó una búsqueda bibliográfica en las bases de datos PubMed, Scopus y SciELO. Se filtraron artículos publicados desde 2000 hasta junio de 2023 y fueron seleccionados aquellos que abordaban algún componente bioético en población con ELA. Resultados: Aspectos relacionados al uso del consentimiento informado y a la toma de decisiones compartidas destacaron como elementos esenciales para apoyar la autonomía de las personas. Conclusión: Una correcta comunicación y una toma de decisiones compartida son claves para respetar la autonomía de las personas. A su vez, la estandarización de procedimientos mediante la investigación clínica permitirá aportar al cumplimiento de los principios bioéticos de beneficencia y no maleficencia, indispensables para la práctica profesional.


Introduction: Amyotrophic lateral sclerosis (ALS) is the most common form of degenerative motor neuron disease in adulthood and is considered a terminal disease. For this reason, the actions of the speech therapist must consider respect for basic bioethical principles to guarantee adequate assistance. Objective: To know those bioethical considerations related to the management and study of people with ALS to then provide an approach to speech therapy. Methodology: A bibliographic search was carried out in the PubMed, Scopus, and SciELO databases. Articles published from 2000 to June 2023 were filtered and those that addressed a bioethical component in the population with ALS were selected. Results: Aspects related to the use of informed consent and shared decision-making stood out as essential elements to support people's autonomy. Conclusion: Proper communication and shared decision-making are key to respecting people's autonomy. In turn, the standardization of procedures through clinical research will contribute to compliance with the bioethical principles of beneficence and non-maleficence, essential for professional practice.

2.
J Palliat Care ; : 8258597241255453, 2024 May 21.
Article in English | MEDLINE | ID: mdl-38772674

ABSTRACT

Objectives: Many children undergo surgery or an invasive procedure during their terminal hospital admission.1 The types of procedures, patients, and the intent of the procedures has not been well defined. Understanding these details may help pediatric surgeons better determine the clinical settings in which certain procedures will not enhance palliation or survival. Methods: A retrospective single institution chart review was performed for patients age 14 days to 18 years with chronic conditions who died while inpatient from 2013-2017. Data was gathered on demographics, primary diagnosis, intubation status, palliative care involvement, duration of hospital stay, length of palliative care involvement, and total number of procedures. Negative binomial regression was used to assess association with number of procedures. Results: 132 children met inclusion criteria. Most children were White and less than one year old. The most common type of diagnosis was cardiac in nature. Children underwent an average of three procedures. 75% were intubated and 77.5% had palliative care involved. Patients who were less than one year old at death were more likely to have been intubated, had longer terminal hospital stays, and had more procedures. Those who were intubated underwent more procedures and had longer hospital stays. Those with longer palliative care involvement had fewer procedures. Conclusions: Children undergo a significant number of surgical procedures during their terminal hospitalization. This may be influenced by age, intubation status, and length of stay. Ongoing study may help refine which procedures may have limited impact on survival in the chronically ill pediatric population.

3.
Front Pediatr ; 12: 1394077, 2024.
Article in English | MEDLINE | ID: mdl-38720944

ABSTRACT

Advances in neonatal medicine have allowed us to rescue extremely preterm infants. However, both long-term vulnerability and the burden of treatment in the neonatal period increase with decreasing gestational age. This raises questions about the justification of life support when a baby is born at the border of viability, and has led to a so-called "grey zone", where many professionals are unsure whether provision of life support is in the child's best interest. Despite cultural, political and economic similarities, the Scandinavian countries differ in their approach to periviable infants, as seen in their respective national guidelines and practices. In Sweden, guidelines and practice are more rescue-focused at the lower end of the border of viability, Danish guidelines emphasizes the need to involve parental views in the decision-making process, whereas Norway appears to be somewhere in between. In this paper, I will give an overview of national consensus documents and practices in Norway, Sweden and Denmark, and reflect on the ethical justification for the different approaches.

4.
Cureus ; 16(4): e57820, 2024 Apr.
Article in English | MEDLINE | ID: mdl-38721224

ABSTRACT

Objectives Among patients with advanced non-small cell lung cancer (NSCLC), there are those who do not have a spouse, family members, or friends to support them in their cancer treatment and daily life: the kinless patients. Therefore, we designed an exploratory study of kinlessness and the prognosis of advanced NSCLC. Methods We retrospectively analyzed the prognosis of clinical factors and treatment and kinlessness in patients with advanced NSCLC with wild-type or unknown status for epidermal growth factor receptor/anaplastic lymphoma kinase (EGFR/ALK) and who visited our hospital from November 2018 to February 2023. In addition to the survival analysis by kinlessness, a multivariable analysis of survival was performed for all clinical factors. In a secondary analysis, a multivariable analysis of the choice of best supportive care (BSC) was performed for all clinical factors. Results One hundred forty-four patients are included in our cohort. There were 131 patients with kin, with a median survival of 1.34 years (95% CI of 1.01-1.79 years). There were 13 patients has no kin, with a median survival of 0.53 years (95% CI 0.23-0.76 years). The log-rank analysis showed that kinless patients had significantly shorter overall survival than patients who have kin. A Cox regression analysis showed that age, distant metastasis, performance status, and kinlessness were associated with overall survival. Secondary analysis showed that there was no statistical association between kinlessness and the choice of BSC in our cohort. Conclusions Kinless patients had shorter survival than patients who have kin in our single-center, retrospective study of patients with advanced NSCLC with wild-type or unknown status for (EGFR/ALK). Further research to evaluate the clinical impact of kinlessness in the treatment of advanced NSCLC is needed.

5.
Iran J Nurs Midwifery Res ; 29(2): 245-254, 2024.
Article in English | MEDLINE | ID: mdl-38721237

ABSTRACT

Background: Comprehensive palliative care for patients with heart failure can be developed by educating cardiac nurses. The current study aimed to design a heart failure palliative care educational program for nurses. Materials and Methods: This study was carried out using the multi-method approach based on two out of four steps of Uys educational program development at Dr. Chamran Hospital, Isfahan, in 2020-2021. In step 1, educational needs were collected through literature review, interviews with 15 patients and 10 nurses, examination of patients' documents and medical records, and observation. Then, in step 2, the importance and necessity of teaching the proposed topics and the teaching and evaluation method of the items were assessed through two rounds of delphi technique (15 expert panel members). Eventually, the educational program was finalized. Results: In step 1, the educational needs of nurses were identified in 6 general fields and 26 general learning topics. In step 2, educational needs [specialized knowledge (55% necessity and 55% importance) and social support (33% necessity and 33% importance)], teaching methods (role-playing, experiential learning, and journal club), and evaluation method (the information analysis method) were removed due to a lack of consensus (11%). Finally, the main parts of the program, including the program mission and vision, general learning topics, general goals, objectives, teaching strategies, and evaluation strategies, were compiled. Conclusions: This program provides nurses with up-to-date information on various aspects of the physical, psychological, social, spiritual, and educational needs of heart failure patients and ensures the provision of better services to them.

6.
J Am Geriatr Soc ; 2024 May 09.
Article in English | MEDLINE | ID: mdl-38721884

ABSTRACT

BACKGROUND: End-of-life (EOL) care patterns may differ by physician age given differences in how physicians are trained or changes associated with aging. We sought to compare patterns of EOL care delivered to older Americans according to physician age. METHODS: We conducted a cross-sectional study of a 20% sample of Medicare fee-for-service beneficiaries aged ≥66 years who died in 2016-2019 (n = 487,293). We attributed beneficiaries to the physician who had >50% of primary care visits during the last 6 months of life. We compared beneficiary-level outcomes by physician age (<40, 40-49, 50-59, or ≥60) in two areas: (1) advance care planning (ACP) and palliative care; and (2) high-intensity care at the EOL. RESULTS: Beneficiaries attributed to younger physicians had slightly higher proportions of billed ACP (adjusted proportions, 17.1%, 16.1%, 15.5%, and 14.0% for physicians aged <40, 40-49, 50-59, and ≥60, respectively; p-for-trend adjusted for multiple comparisons <0.001) and palliative care counseling or hospice use in the last 180 days of life (64.5%, 63.6%, 61.9%, and 60.8%; p-for-trend <0.001). Similarly, physicians' younger age was associated with slightly lower proportions of emergency department visits (57.4%, 57.0%, 57.4%, and 58.1%; p-for-trend <0.001), hospital admissions (51.2%, 51.1%, 51.4%, and 52.1%; p-for-trend <0.001), intensive care unit admissions (27.8%, 27.9%, 28.2%, and 28.3%; p-for-trend = 0.03), or mechanical ventilation or cardiopulmonary resuscitation (14.2, 14.9%, 15.2%, and 15.3%; p-for-trend <0.001) in the last 30 days of life, and in-hospital death (20.2%, 20.6%, 21.3%, and 21.5%; p-for-trend <0.001). CONCLUSIONS: We found that differences in patterns of EOL care between beneficiaries cared for by younger and older physicians were small, and thus, not clinically meaningful. Future research is warranted to understand the factors that can influence patterns of EOL care provided by physicians, including initial and continuing medical education.

7.
J Palliat Med ; 2024 May 09.
Article in English | MEDLINE | ID: mdl-38722082

ABSTRACT

Addressing the psychiatric aspects of serious illness in palliative care (PC) is crucial to both care delivery and outcomes. Psychiatric comorbidities are common among patients with PC needs and can significantly impact their total burden of symptomatic distress, overall quality of life, functional independence, and healthcare utilization. Yet, these aspects of care are often deferred to mental health consultant teams in the context of busy PC services and often limited human resources. To provide comprehensive and person-centered care, PC clinicians must understand the interplay between medical conditions and psychiatric presentations within a biopsychosocial framework to respond empathically, efficiently, and effectively. This article is the first of a two-part series developed in collaboration with a group of psychiatric-palliative care specialists. This article explores ten common physical manifestations of psychiatric illness and treatment among patients facing serious illnesses. The second article will provide pragmatic tips PC clinicians should know about the psychiatric manifestations of nonpsychiatric serious illness and treatment. Combined, these two articles support a holistic approach that PC clinicians can use to prioritize and integrate both mental and emotional well-being throughout the continuum of serious illness.

8.
Article in English | MEDLINE | ID: mdl-38722682

ABSTRACT

Myoclonus is a relatively rare involuntary movement that is often observed in palliative care settings and that can cause patient distress. The purpose of this study is to investigate the occurrence of myoclonus and countermeasures against it in terminally ill patients with cancer diagnosed by palliative care specialists at Komaki City Hospital, Japan. We retrospectively reviewed patients with terminal cancer who received palliative care consultations between January 2018 and May 2019 and who were diagnosed with myoclonus by palliative care specialists, using electronic medical records. Patient demographics, time from onset of myoclonus to death, daily opioid use, countermeasures, and outcome of myoclonus were assessed. Of 360 patients examined during this period, 45 (12.5%) were diagnosed with myoclonus. Median age was 71 (range, 43-88) years; median time from onset of myoclonus to death was 8 days (range, 0-56); opioid usage was present in 39 patients (morphine, oxycodone, and fentanyl: n = 6, 21, and 12, respectively); and median oral morphine equivalent at onset of myoclonus was 60 mg (range, 12-336 mg). Myoclonus treatment was administered to 21 patients (opioid dose reduction, opioid switching, and others: n = 14, 3, and 4, respectively). Myoclonus is a common complication in patients with terminal cancer.

9.
Eur J Surg Oncol ; 50(6): 108368, 2024 Apr 27.
Article in English | MEDLINE | ID: mdl-38723448

ABSTRACT

BACKGROUND: Palliative surgery (PS) is defined as any surgical procedure aimed at improving quality of life or relieving symptoms caused by an advanced or metastatic cancer. The involvement of patients, caregivers, and other professional figures is crucial for obtaining optimal symptom relief and avoiding complications. This study aims to evaluate the short-term outcome and related factors in patients undergoing PS. PATIENTS AND METHODS: A retrospective analysis was performed in consecutive patients who underwent palliative gastrointestinal surgery at our surgical unit during the period June 2018 to May 2023. Demographic, clinical, pathological and follow-up data were collected from a prospectively maintained department database. The main outcomes were complications, symptoms palliation, symptoms recurrence and return to systemic chemotherapy. Standard statistical analysis was performed. RESULTS: During the study period, 127 patients underwent palliative surgery. The Clavien-Dindo 3-5 complication rate and mortality rate were 19.7 % and 6 %, respectively. The resolution of symptoms was achieved in 109 patients (89 %). Successful symptom palliation was significantly related to the possibility of returning to systemic chemotherapy (SC) (OR 9.30 95 % CI 0.1.83-47.18, p 0.007). The only factor related to survival in multivariate analysis was the return to systemic chemotherapy (HR 0.25 95 % CI 0.15-0.42 0.001). CONCLUSION: PS in selected patients is effective for symptom resolution and improving overall survival, if the result is making anticancer therapy possible. Prospective data collection is in any case warranted in every institution performing PS for the purpose of monitoring appropriateness and quality of surgical care.

11.
Am J Hosp Palliat Care ; : 10499091241253538, 2024 May 09.
Article in English | MEDLINE | ID: mdl-38725344

ABSTRACT

Background: Palliative care (PC) aims to enhance the quality of life for patients when confronted with serious illness. As stroke inflicts high morbidity and mortality, the integration of PC within acute stroke care remains an important aspect of quality inpatient care. However, there is a tendency to offer PC to stroke patients only when death appears imminent. We aim to understand why this may be by examining stroke patients admitted to a regional stroke centre who subsequently died and their provision of PC. Methods: We conducted a retrospective single-centre cohort study of patients who died during admission to the regional stroke centre at Sunnybrook Health Sciences Centre (SHSC) in Toronto, Ontario, Canada. Baseline demographics were assessed using means, standard deviations (SD), medians, interquartile ranges (IQR), and proportions. Descriptive statistics, univariate, and multivariate analyses were performed to ascertain relationships between collected variables. Results: Univariate modeling demonstrated that older age, being female, no stroke diagnosis at admission to hospital, ischemic stroke, and comorbidities of cancer or dementia were associated with a higher incidence of palliative medicine consultation (PMC), while admission from an acute care hospital and a Glasgow Coma Scale (GCS) coma classification were associated with a lower incidence of PMC. The multivariate model identified the GCS coma-related category as the only significant factor associated with a higher incidence of death but was non-significantly related to a lower incidence of PMC. Conclusion: These results highlight continued missed opportunities for PC in stroke patients and underscore the need to better optimize PMC.

12.
Am J Hosp Palliat Care ; : 10499091241252058, 2024 May 10.
Article in English | MEDLINE | ID: mdl-38725412

ABSTRACT

BACKGROUND: Gaps in communication of end-of-life care preferences increase risk of patient harm. Adoption of oncology practice guidelines advocating serious illness communication for patients with advanced cancer is limited. OBJECTIVES: (1) Increase Serious Illness Conversation (SIC) use across oncology teams via an interdisciplinary quality improvement (QI) approach and (2) assess patient reported shared decision making (SDM) experiences with clinicians engaged in SIC implementation. DESIGN: QI methodology was applied to spread the implementation of SIC across 4 oncology teams. CollaboRATE scores were used to evaluate patient reported outcomes of SDM for patients with advanced cancer. SETTINGS/SUBJECTS: The SIC QI initiative was a component of the Promise Partnership Learning Health System (PPLHS) piloted in the Dartmouth Cancer Center, Lebanon, NH, USA. MEASUREMENTS: (1) The percentage of eligible patients with documented SIC and (2) a comparison of a patient reported measure of SDM (CollaboRATE) among SIC eligible patients in encounters with providers who took part in the implementation versus those who did not. RESULTS: Oncology teams screened a total of 538 patients, identified 278 eligible patients, and completed 144 SIC conversations. The teams improved the proportion of documented SIC among eligible patients from near 0% to a collective frequency of 52%. For clinicians' top-box CollaboRATE scores, a chi-squared test demonstrated a statistically significant association between providers implementing SIC into practice and patient reported shared decision making (.16, p = .031). CONCLUSIONS: This approach allows for tailoring of iterative improvement cycles to mitigate barriers and improve the practice of SIC among oncology teams.

13.
J Palliat Med ; 2024 May 10.
Article in English | MEDLINE | ID: mdl-38726709

ABSTRACT

Background: Palliative care demands in the United States are growing amid a comparatively small workforce of palliative care clinicians and researchers. Therefore, determining research and clinical practice priorities is essential for streamlining initiatives to advance palliative care science and practice. Objectives: To identify and rank palliative care research and clinical practice priority areas through expert consensus. Design: Using a modified Delphi method, U.S. palliative care experts identified and ranked priority areas in palliative care research and clinical practice. Priorities were thematically grouped and analyzed for topic content and frequency; univariate analysis used the median of each priority item ranking, with a cutoff median of ≤8 indicating >76% agreement for an item's ranking. Results: In total, 27 interdisciplinary pediatric and adult palliative care experts representing 19 different academic institutions and medical centers participated in the preliminary survey and the first Delphi round, and 22 participated in the second Delphi round. The preliminary survey generated 78 initial topics, which were developed into 22 priority areas during the consensus meeting. The top five priorities were (1) access to palliative care, (2) equity in palliative care, (3) adequate financing of palliative care, (4) provision of palliative care in primary care settings, and (5) palliative care workforce challenges. Conclusions: These expert-identified priority areas provide guidance for researchers and practitioners to develop innovative models, policies, and interventions, thereby enriching the quality of life for those requiring palliative care services.

14.
J Palliat Med ; 2024 May 10.
Article in English | MEDLINE | ID: mdl-38727545

ABSTRACT

The management of cancer-related pain in patients with opioid use disorder (OUD) remains complex and often challenging for clinicians and patients. There is currently a paucity of data to guide best practices, and the evidence that exists is variably applied. In this hospital-based questionnaire, we sought to understand the variation in practice patterns among clinicians in palliative medicine, addiction medicine, and hospital medicine, in caring for this complex patient population. Sixty-two questionnaire responses were analyzed and variation was found in management of pain, as well as initiation or titration of buprenorphine and methadone. There was also a significant difference in postdischarge subspecialty follow-up. Furthermore, the findings suggest that buprenorphine and methadone may be underutilized in this population. Patients and clinicians may benefit from additional support and standardization of practices to best manage coexisting cancer-related pain and OUD.

15.
J Palliat Med ; 2024 May 10.
Article in English | MEDLINE | ID: mdl-38727571

ABSTRACT

Mental health issues are widespread and significant among individuals with serious illness. Among patients receiving palliative care (PC), psychiatric comorbidities are common and impact patient quality of life. Despite their prevalence, PC clinicians face challenges in effectively addressing the intricate relationship between medical and psychiatric disorders due to their complex, intertwined and bidirectionally influential nature. This article, created collaboratively with a team of psychiatric-palliative care experts, is the second in a two-part series examining the bidirectional relationship between medical and psychiatric illness in PC. This article explores 10 prevalent psychiatric manifestations associated with severe illness and its treatment. Building upon the first article, which focused on 10 common physical manifestations of psychiatric illness among patients receiving PC, these two articles advocate for an integrated approach to PC that prioritizes mental and emotional wellbeing across the continuum of serious illness.

16.
Med Anthropol ; 43(4): 338-352, 2024 May 18.
Article in English | MEDLINE | ID: mdl-38753501

ABSTRACT

We explore the temporalities that shape and alleviate serious health-related suffering among those with chronic and terminal conditions in Kerala, India. Drawing on ethnographic fieldwork between 2009 and 2019, we examine the entanglements between waiting for care within dominant institutions and the community organizing that palliates this waiting. Specifically, people navigate multiple medical institutions, experience loneliness and abandonment, loss of autonomy, and delays and denials of recognition as they wait for care. Community palliative care organizations offering free, routine, home-based care provide samadhanam (peace of mind) and swatantrayam (self-determination) in lifeworlds mired with chronic waiting. We document how community care sustains an alternative politics of shared time, untethered from marketized notions of efficiency and productivity toward profits. In so doing, we cast in high relief community healthcare imaginaries that alleviate serious health-related suffering and reconfigure Global North-centric perspectives.


Subject(s)
Anthropology, Medical , Humans , India/ethnology , Female , Male , Palliative Care , Community Health Services , Middle Aged , Adult , Chronic Disease/therapy , Chronic Disease/ethnology
17.
Am J Hosp Palliat Care ; : 10499091241255117, 2024 May 16.
Article in English | MEDLINE | ID: mdl-38756049

ABSTRACT

BACKGROUND: Patients with advanced cancer commonly involve family caregivers in decision-making for palliative care. However, how patients with advanced cancer and family caregivers accommodate each other in decision-making is unclear. METHODS: A qualitative study in advanced cancer was conducted with 14 patients and 19 family caregivers recruited from two hospices comprising a large regional specialist palliative care service in Ireland. Data comprised semi-structured interviews with participants. The data were analyzed using grounded theory coding procedures. RESULTS: Most patients preferred to make care decisions with their family caregiver or at least involve their family caregiver in care discussions. Patients engaged in shared decision-making because they felt they benefited from caregiver support. Patients accommodated family caregiver preferences out of concern for that person and because they trusted them. Family caregivers accommodated patient preferences because they wanted to honor the patient's wishes and felt a responsibility to protect patient autonomy when they had a close relationship with the patient. Prior conflict between the patient and family caregiver was a barrier to mutual accommodation. Although concealment was used as a mechanism to support accommodation between the patient and family caregiver, both sought to communicate openly with other family members to negate potential conflict between each other and the wider family. CONCLUSION: Patients with advanced cancer and family caregivers in specialist palliative care support one another by accommodating each other's preferences for patient care. Patients with advanced cancer and family caregivers accommodate one another in decision-making out of a sense of responsibility to one another.

18.
J Clin Nurs ; 2024 May 16.
Article in English | MEDLINE | ID: mdl-38757402

ABSTRACT

BACKGROUND: Early referral to palliative care has been viewed as providing opportunity for accomplishing end-of-life care goals of life closure, comfortable dying and effective grieving. However, previous studies have shown that palliative care referrals are being made too late. Healthcare providers play important role in helping terminally ill patients to early access and being referred to palliative care. It is necessary to understand healthcare providers' attitudes on palliative care referral and associated factors regarding referrals. OBJECTIVES: This review aimed to identify and synthesise healthcare providers' attitudes and associated factors on palliative care referrals systematically. DESIGN: A systematic review of qualitative evidence and meta-aggregation was conducted and guided according to PRISMA guideline. DATA SOURCES: PubMed, CINAHL, PsycINFO, EMBASE, Web of Science and Cochrane databases from inception to 24 October 2022. RESULTS: Database searches yielded 5856 references. Twenty-two studies met eligibility criteria and of moderate to high methodological quality were included. Studies occurred in USA, UK, Australia and France with 716 healthcare providers participants were included. A total of 378 codings were finally extracted and integrated into 41 categories, forming three synthesised findings: (1) Healthcare providers' attitudes towards palliative care referrals, (2) the influence of subjective norms on palliative care referral behaviour and (3) perceived behavioural control on palliative care referral behaviour. CONCLUSION: This review demonstrates a series of factors that affect the palliative care referrals, including the attitudes of healthcare providers, the participation of patients and families, the support of colleagues and supervisors, inter-professional collaboration, the availability of hospice resource, disease trajectory and socio-economic factors. Further research that addresses these factors and design relevant trainings on improving healthcare providers' attitudes, enhancing patient and family engagement, strengthening support networks and optimising resource allocation may aid to meet increasing demands of patients. RELEVANCE TO CLINICAL PRACTICE: This review not only guides healthcare providers in making better decisions about patient referrals by identifying and addressing barriers but also aids in the development of effective interventions that facilitate the early initiation of referrals. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.

19.
Pediatr Blood Cancer ; : e31068, 2024 May 16.
Article in English | MEDLINE | ID: mdl-38757456
20.
Pediatr Blood Cancer ; : e31066, 2024 May 16.
Article in English | MEDLINE | ID: mdl-38757484

ABSTRACT

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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