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1.
Clin Infect Dis ; 78(3): e27-e36, 2024 03 20.
Article in English | MEDLINE | ID: mdl-38301076

ABSTRACT

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.


Subject(s)
Physicians , Terminal Care , Humans , Anti-Bacterial Agents/therapeutic use , Death , Decision Making , Inpatients , Terminal Care/psychology
2.
Am J Med Genet C Semin Med Genet ; 196(1): e32080, 2024 Mar.
Article in English | MEDLINE | ID: mdl-38087874

ABSTRACT

Code status is a label in the medical record indicating a patient's wishes for end-of-life (EOL) care in the event of a cardiopulmonary arrest. People with intellectual disabilities had a higher risk of both diagnosis and mortality from coronavirus infections (COVID-19) than the general population. Clinicians and disability advocates raised concerns that bias, diagnostic overshadowing, and ableism could impact the allocation of code status and treatment options, for patients with intellectual disabilities, including Down syndrome (DS). To study this, retrospective claims data from the Vizient® Clinical Data Base (used with permission of Vizient, all rights reserved.) of inpatient encounters with pneumonia (PNA) and/or COVID-19 at 825 hospitals from January 2019 to June 2022 were included. Claims data was analyzed for risk of mortality and risk of "Do Not Resuscitate" (DNR) status upon admission, considering patient age, admission source, Elixhauser comorbidities (excluding behavioral health), and DS. Logistic regression models with backward selection were created. In total, 1,739,549 inpatient encounters with diagnoses of COVID-19, PNA, or both were included. After controlling for other risk factors, a person with a diagnosis of DS and a diagnosis of COVID-19 PNA had 6.321 odds ratio of having a DNR status ordered at admission to the hospital compared with those with COVID-19 PNA without DS. The diagnosis of DS had the strongest association with DNR status after controlling for other risk factors. Open and honest discussions among healthcare professionals to foster equitable approaches to EOL care and code status are needed.


Subject(s)
COVID-19 , Down Syndrome , Intellectual Disability , Humans , Retrospective Studies , Resuscitation Orders , Down Syndrome/complications , Down Syndrome/epidemiology
3.
Cancer ; 130(4): 636-644, 2024 02 15.
Article in English | MEDLINE | ID: mdl-37987207

ABSTRACT

BACKGROUND: Despite the widespread implementation of telemedicine, there are limited data regarding its impact on key components of care for patients with incurable or high-risk cancer. For these patients, high-quality care requires detailed conversations regarding treatment priorities (advance care planning) and clinical care to minimize unnecessary acute care (unplanned hospitalizations). Whether telemedicine affects these outcomes relative to in-person clinic visits was examined among patients with cancer at high risk for 6-month mortality. METHODS: This retrospective cohort study included adult patients with cancer with any tumor type treated at the University of Pennsylvania who were newly identified between April 1 and December 31, 2020, to be at high risk for 6-month mortality via a validated machine learning algorithm. Separate modified Poisson regressions were used to assess the occurrence of advance care planning and unplanned hospitalizations for telemedicine as compared to in-person visits. Additional analyses were done comparing telemedicine type (video or phone) as compared to in-person clinic visits. RESULTS: The occurrence of advance care planning was similar between telemedicine and in-person visits (6.8% vs. 6.0%; adjusted risk ratio [aRR], 1.25; 95% CI, 0.92-1.69). In regard to telemedicine subtype, patients exposed to video encounters were modestly more likely to have documented advance care planning in comparison to those seen in person (7.5% vs. 6.0%; aRR, 1.48; 95% CI, 1.03-2.11). The 3-month risk for unplanned hospitalization was comparable for telemedicine compared to in-person clinic encounters (21% vs. 18%; aRR, 1.06; 95% CI, 0.81-1.38). CONCLUSIONS: In this study, care delivered by telemedicine, compared to in-person clinic visits, produced comparable rates of advance care planning conversations without increasing hospitalizations, which suggests that vulnerable patients can be managed safely by telemedicine.


Subject(s)
Advance Care Planning , Neoplasms , Telemedicine , Humans , Adult , Retrospective Studies , Hospitalization , Neoplasms/therapy
4.
Cancer ; 130(21): 3757-3767, 2024 Nov 01.
Article in English | MEDLINE | ID: mdl-39077884

ABSTRACT

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.


Subject(s)
Neoplasms , Oncologists , Practice Patterns, Physicians' , SEER Program , Terminal Care , Humans , Terminal Care/methods , Terminal Care/statistics & numerical data , Aged , Male , Female , Oncologists/statistics & numerical data , Practice Patterns, Physicians'/statistics & numerical data , Neoplasms/drug therapy , Aged, 80 and over , United States/epidemiology , Medicare/statistics & numerical data , Medical Oncology
5.
Oncologist ; 29(5): e708-e715, 2024 May 03.
Article in English | MEDLINE | ID: mdl-38387031

ABSTRACT

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 team < 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 intervention > 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.


Subject(s)
Breast Neoplasms , Palliative Care , Terminal Care , Humans , Breast Neoplasms/therapy , Breast Neoplasms/pathology , Breast Neoplasms/drug therapy , Breast Neoplasms/mortality , Female , Palliative Care/methods , Terminal Care/methods , Terminal Care/standards , Middle Aged , Aged , Neoplasm Metastasis , Adult , France , Aged, 80 and over
6.
Oncologist ; 2024 Jun 28.
Article in English | MEDLINE | ID: mdl-38940449

ABSTRACT

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%, P < .001), and more likely to use more than 3 days of hospice care at EOL (19.6% vs 68.0%, P < .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.

7.
Oncologist ; 29(7): 629-637, 2024 Jul 05.
Article in English | MEDLINE | ID: mdl-38652165

ABSTRACT

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 (n = 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.


Subject(s)
Activities of Daily Living , Caregivers , Neoplasms , Humans , Neoplasms/psychology , Male , Female , Caregivers/psychology , Caregivers/statistics & numerical data , Middle Aged , Aged , Terminal Care/psychology , Cost of Illness , Adult , Caregiver Burden/psychology , Aged, 80 and over
8.
J Pediatr ; 271: 114038, 2024 Aug.
Article in English | MEDLINE | ID: mdl-38554745

ABSTRACT

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.


Subject(s)
Neoplasms , Palliative Care , Terminal Care , Humans , Neoplasms/therapy , Terminal Care/standards , Female , Male , Child , Palliative Care/standards , Quality of Health Care
9.
J Gen Intern Med ; 39(4): 619-625, 2024 Mar.
Article in English | MEDLINE | ID: mdl-37946020

ABSTRACT

BACKGROUND: Understanding how the coronavirus disease 2019 (COVID-19) pandemic affected site of death-an important patient-centered outcome related to end-of-life care-would inform healthcare system resiliency in future public health emergencies. OBJECTIVE: To evaluate the changes in site of death during the COVID-19 pandemic among older adults without a COVID-19 diagnosis. DESIGN: Using a quasi-experimental difference-in-differences method, we estimated net changes in site of death during the pandemic period (March-December 2020) from the pre-pandemic period (January-February 2020), using data on the same months in prior years (2016-2019) as the control. PARTICIPANTS: A 20% sample of Medicare Fee-for-Service beneficiaries aged 66 years and older who died in 2016-2020. We excluded beneficiaries with a hospital diagnosis of COVID-19. MAIN MEASURES: We assessed each of the following sites of death separately: (1) home or community; (2) acute care hospital; and (3) nursing home. KEY RESULTS: We included 1,133,273 beneficiaries without a hospital diagnosis of COVID-19. We found that the proportion of Medicare beneficiaries who died at home or in the community setting increased (difference-in-differences [DID] estimate, + 3.1 percentage points [pp]; 95% CI, + 2.6 to + 3.6 pp; P < 0.001) and the proportion of beneficiaries who died (without COVID-19 diagnosis) in an acute care hospital decreased (- 0.8 pp; 95% CI, - 1.2 to - 0.4 pp; P < 0.001) during the pandemic. We found no evidence that the proportion of deaths in nursing homes changed during the pandemic. CONCLUSIONS: Using national data on older adults without a COVID-19 diagnosis, we found that site of death shifted toward home or community settings during the COVID-19 pandemic. Our findings may inform clinicians and policymakers in supporting end-of-life care during future public health emergencies.


Subject(s)
COVID-19 , Medicare , Aged , Humans , United States , Pandemics , COVID-19 Testing , Emergencies
10.
J Gen Intern Med ; 39(13): 2487-2495, 2024 Oct.
Article in English | MEDLINE | ID: mdl-38769259

ABSTRACT

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.


Subject(s)
Advance Care Planning , Heart Failure , Medicare , Terminal Care , Humans , Heart Failure/therapy , Heart Failure/economics , Advance Care Planning/economics , United States , Female , Male , Aged , Retrospective Studies , Medicare/economics , Cross-Sectional Studies , Aged, 80 and over , Terminal Care/economics , Health Expenditures/statistics & numerical data , Patient Acceptance of Health Care/statistics & numerical data
11.
J Gen Intern Med ; 2024 Sep 04.
Article in English | MEDLINE | ID: mdl-39227543

ABSTRACT

BACKGROUND: The COVID-19 pandemic affected healthcare utilization worldwide, but changes in home medical care utilization have not been fully revealed. OBJECTIVE: This study aims to clarify the changes in the use of home medical care services in Japan due to the pandemic. DESIGN: Interrupted time series analysis of national medical claims data. PARTICIPANTS: Individuals with home medical care use occurring in Japan between April 2019 and March 2022. INTERVENTIONS: The declaration of a state of emergency (April 2020) by the Japanese government. MAIN MEASURES: The outcomes were the monthly uses of regular home visits, emergency house calls, terminal care, and in-home deaths. Terminal care was stratified by care setting (home or nursing home) and the type of home medical care facilities (enhanced home care support clinics and hospitals (HCSCs), conventional HCSCs, and general clinics and hospitals). KEY RESULTS: Regular home visits showed no significant change, but emergency house calls exhibited an upward trend (1258 uses/month, 95% CI 43 to 2473). Both terminal care and in-home deaths experienced an immediate increase in level (1116 uses/month, 95% CI 549 to 1683; 1459 uses/month, 95% CI 612 to 2307), followed by a gradual increase in trend (141 uses/month, 95% CI 73 to 209; 215 uses/month, 95% CI 114 to 317). The immediate increase of terminal care occurred only for home patients. Enhanced HCSCs showed the most prominent increase in both level and trend, followed by conventional HCSCs, and general clinics and hospitals. CONCLUSIONS: The COVID-19 pandemic increased the use of emergency house calls and terminal care among home medical care in Japan, particularly for home patients and enhanced HCSCs. These findings suggest that the pandemic revitalized the importance of home medical care as a patient-centered care delivery model and highlight the need for strategic healthcare planning and home medical care resource allocation to anticipate future pandemics.

12.
J Gen Intern Med ; 39(6): 893-901, 2024 May.
Article in English | MEDLINE | ID: mdl-38240917

ABSTRACT

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.


Subject(s)
Bereavement , Palliative Care , Quality of Health Care , Terminal Care , Humans , Palliative Care/standards , Male , Aged , Female , Retrospective Studies , Aged, 80 and over , Terminal Care/standards , Inpatients , Cohort Studies , Hospice Care/standards , Hospice Care/statistics & numerical data , United States , Hospitalization/statistics & numerical data
13.
Eur J Haematol ; 112(5): 743-755, 2024 May.
Article in English | MEDLINE | ID: mdl-38154958

ABSTRACT

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.


Subject(s)
Hematologic Neoplasms , Hospice Care , Neoplasms , Terminal Care , Humans , Palliative Care , Hematologic Neoplasms/diagnosis , Hematologic Neoplasms/epidemiology , Hematologic Neoplasms/therapy , Republic of Korea/epidemiology , Retrospective Studies , Neoplasms/therapy
14.
Psychooncology ; 33(1): e6276, 2024 Jan.
Article in English | MEDLINE | ID: mdl-38282233

ABSTRACT

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.


Subject(s)
Bereavement , Neoplasms , Terminal Care , Humans , Grief , Palliative Care , Neoplasms/therapy , Neoplasms/psychology , Death
15.
Pediatr Blood Cancer ; : e31354, 2024 Oct 04.
Article in English | MEDLINE | ID: mdl-39367580

ABSTRACT

Pediatric surgeons engaged in oncology will inevitably treat patients receiving palliative care, but their role in this context is poorly described. This article identifies some of the challenges and opportunities of surgical involvement in pediatric oncology palliative care, underscoring how the surgeon's expertise can be exploited to significantly benefit children with cancer. Specific examples of skills (procedural, communication, and coordination) that surgeons can provide to the multidisciplinary palliative care teams are described and the importance of collaboration is highlighted.

16.
Int J Equity Health ; 23(1): 81, 2024 Apr 25.
Article in English | MEDLINE | ID: mdl-38664833

ABSTRACT

BACKGROUND: Improving equity and early access to palliative care for underserved populations in Canada is a priority. Little is known regarding access to palliative and end-of-life care in the Black population. METHODS: We undertook a scoping review using the framework by Arksey and O'Malley to identify knowledge, access gaps, and experiences of palliative and end-of-life care among Blacks living with life-limiting illnesses in Canada. Primary studies, discussion papers, books, and reports were considered eligible. We followed a comprehensive search strategy developed by an information scientist. Searches were performed in the following bibliographic databases: Medline, EMBASE, PsycINFO via OVID, CINAHL via EBSCOhost, Scopus and Cochrane Library via Wiley. The search strategy was derived from three main concepts: (1) Black people; (2) Canada and Canadian provinces; (3) Palliative, hospice, or end-of-life care. No publication date or language limits were applied. Titles and abstracts were screened for eligibility by one reviewer and full text by two independent reviewers. RESULTS: The search yielded 233 articles. Nineteen articles were selected for full-text review, and 7 articles met the inclusion criteria. These studies were published between 2010 and 2021, and conducted in the provinces of Ontario and Nova Scotia only. Studies used both quantitative and qualitative methods and included cancer decedents, next of kin, family caregivers and religious leaders. Sample sizes in various studies ranged from 6 - 2,606 participants. Included studies reported a general lack of understanding about palliative and end-of-life care, positive and negative experiences, and limited access to palliative and end-of-life care for Blacks, across all care settings. CONCLUSION: Findings suggest limited knowledge of palliative care and inequities in access to palliative and end-of-life care for Blacks living with life-limiting illnesses in 2 Canadian provinces. There is an urgent need for research to inform tailored and culturally acceptable strategies to improve understanding and access to palliative care and end-of-life care among Blacks in Canada.


Subject(s)
Health Services Accessibility , Healthcare Disparities , Palliative Care , Terminal Care , Humans , Black People/statistics & numerical data , Canada
17.
Crit Care ; 28(1): 251, 2024 Jul 18.
Article in English | MEDLINE | ID: mdl-39026325

ABSTRACT

BACKGROUND: Healthcare inequities for patients with traumatic brain injury (TBI) represent a major priority area for trauma quality improvement. We hypothesized a relationship between health insurance status and timing of withdrawal of life sustaining treatment (WLST) for adults with severe TBI. METHODS: This multicenter retrospective observational cohort study utilized data collected between 2017 and 2020. We identified adult (age ≥ 16) patients with isolated severe TBI admitted participating Trauma Quality Improvement Program centers. We determined the relationship between insurance status (public, private, and uninsured) and the timing of WLST using a competing risk survival analysis framework adjusting for baseline, clinical, injury and trauma center characteristics. Multivariable cause-specific Cox regressions were used to compute adjusted hazard ratios (HR) reflecting timing of WLST, accounting for mortality events. We also quantified the between-center residual variability in WLST using the median odds ratio (MOR) and measured insurance status association with access to rehabilitation at discharge. RESULTS: We identified 42,111 adults with isolated severe TBI treated across 509 trauma centers across North America. There were 10,771 (25.6%) WLST events in the cohort and a higher unadjusted incidence of WLST events was evident in public insurance patients compared to private or uninsured groups. After adjustment, WLST occurred earlier for publicly insured (HR 1.07, 95% CI 1.02-1.12) and uninsured patients (HR 1.29, 95% CI 1.18-1.41) compared to privately insured patients. Access to rehabilitation was lower for both publicly insured and uninsured patients compared to patients with private insurance. Accounting for case-mix, the MOR was 1.49 (95% CI 1.43-1.55), reflecting significant residual between-center variation in WLST decision-making. CONCLUSIONS: Our findings highlight the presence of disparate WLST practices independently associated with health insurance status. Additionally, these results emphasize between-center variability in WLST, persisting despite adjustments for measurable patient and trauma center characteristics.


Subject(s)
Brain Injuries, Traumatic , Insurance, Health , Withholding Treatment , Humans , Retrospective Studies , Brain Injuries, Traumatic/therapy , Male , Female , Adult , Middle Aged , Insurance, Health/statistics & numerical data , Cohort Studies , Withholding Treatment/statistics & numerical data , Withholding Treatment/trends , Insurance Coverage/statistics & numerical data , Insurance Coverage/standards , Aged
18.
Health Econ ; 33(6): 1211-1228, 2024 06.
Article in English | MEDLINE | ID: mdl-38358920

ABSTRACT

Despite the growing need for surrogate decision-making for older adults, little is known about how surrogates make decisions and whether advance directives would change decision-making. We conducted a nationally representative experimental survey that cross-randomized cognitive impairment, gender, and characteristics of advance care planning among hospitalized older adults through a series of vignettes. Our study yielded three main findings: first, respondents were much less likely to recommend life-sustaining treatments for patients with dementia, especially after personal exposure. Second, respondents were more likely to ignore patient preferences for life-extending treatment when the patient had dementia, and choose unwanted life-extending treatments for patients without dementia. Third, in scenarios where the patient's wishes were unclear, respondents were more likely to choose treatments that matched their own preferences. These findings underscore the need for improved communication and decision-making processes for patients with cognitive impairment and highlight the importance of choosing a surrogate decision-maker with similar treatment preferences.


Subject(s)
Decision Making , Dementia , Patient Preference , Humans , Dementia/therapy , Male , Female , Aged , Advance Directives , Aged, 80 and over , Middle Aged , Proxy , Surveys and Questionnaires , Advance Care Planning
19.
Support Care Cancer ; 32(5): 273, 2024 Apr 08.
Article in English | MEDLINE | ID: mdl-38587665

ABSTRACT

PURPOSE: Health service use is most intensive in the final year of a person's life, with 80% of this expenditure occurring in hospital. Close involvement of primary care services has been promoted to enhance quality end-of-life care that is appropriate to the needs of patients. However, the relationship between primary care involvement and patients' use of hospital care is not well described. This study aims to examine primary care use in the last year of life for cancer patients and its relationship to hospital usage. METHODS: Retrospective cohort study in Victoria, Australia, using linked routine care data from primary care, hospital and death certificates. Patients were included who died related to cancer between 2008 and 2017. RESULTS: A total of 758 patients were included, of whom 88% (n = 667) visited primary care during the last 6 months (median 9.1 consultations). In the last month of life, 45% of patients were prescribed opioids, and 3% had imaging requested. Patients who received home visits (13%) or anticipatory medications (15%) had less than half the median bed days in the last 3 months (4 vs 9 days, p < 0.001, 5 vs 10 days, p = 0.001) and 1 month of life (0 vs 2 days, p = 0.002, 0 vs 3 days, p < 0.001), and reduced emergency department presentations (32% vs 46%, p = 0.006, 31% vs 47% p < 0.001) in the final month. CONCLUSION: This study identifies two important primary care processes-home visits and anticipatory medication-associated with reduced hospital usage and intervention at the end of life.


Subject(s)
Death , Neoplasms , Humans , Retrospective Studies , Hospitals , Neoplasms/therapy , Victoria , Primary Health Care
20.
Support Care Cancer ; 32(9): 574, 2024 Aug 06.
Article in English | MEDLINE | ID: mdl-39107508

ABSTRACT

PURPOSE: Palliative Care Outcomes Collaboration (PCOC) is an internationally recognized program developed in Australia. Taiwan became the first country in Asia to implement PCOC in 2020. There is little research on the impact of PCOC in Asia. We sought to examine the effects of the Taiwan PCOC on palliative outcomes. METHODS: The study analyzed the impact of PCOC with a retrospective cohort design. The hypotheses were that PCOC could improve end-of-life care quality and reduce non-beneficial treatments. The study enrolled patients with terminal illnesses from the inpatient palliative care units. General characteristics of participants were collected. Exclusion criteria were people without a diagnosis of terminal illness, aged 20 and younger, or with missing data. RESULTS: The study collected 1,121 patients, 555 in the PCOC comparison group and 566 in the intervention group. Most patients were with terminal cancer (88.58%). The rates of hospital deaths in the PCOC and non-PCOC groups were 68.73% vs. 74.95% (P = 0.021). A multivariable logistic regression model, adjusting for age, sex, Charlson comorbidity index, and terminal cancer status, was utilized. The PCOC intervention significantly decreased hospital deaths (OR = 0.26, 95%CI 0. 16-0.41, P < 0.001). CONCLUSIONS: PCOC in Taiwan significantly reduced hospital deaths among terminal patients, possibly due to effective symptom management and improved communication via the use of patient-reported outcomes. Further research is needed to support PCOC implementation in Asia and investigate collaboration programs' impact on end-of-life care quality and non-beneficial treatments.


Subject(s)
Palliative Care , Terminal Care , Humans , Palliative Care/methods , Palliative Care/organization & administration , Male , Female , Retrospective Studies , Terminal Care/methods , Taiwan , Aged , Middle Aged , Aged, 80 and over , Quality of Health Care , Hospital Mortality , Neoplasms/therapy , Adult , Logistic Models , Cohort Studies
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