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Getie A, Yilak G, Ayenew T, Amlak BT. Palliative care utilisation globally by cancer patients: systematic review and meta-analysis. BMJ Support Palliat Care 2025; 15:291-299. [PMID: 40032593 DOI: 10.1136/spcare-2024-005000] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 05/24/2024] [Accepted: 02/01/2025] [Indexed: 03/05/2025]
Abstract
INTRODUCTION The rising global prevalence of cancer reveals significant regional disparities in palliative care adoption. While some countries have incorporated palliative care into their systems, over half of the world lacks such services, and oncology-specific palliative care integration is sparse. This study evaluates the global prevalence of palliative care use among cancer patients. METHODS A comprehensive search across multiple databases was conducted to identify relevant studies. Data extraction and organisation were managed using Microsoft Excel, and analysis was performed with STATA/MP 17.0. A weighted inverse variance random-effects model was applied, and heterogeneity was assessed with Cochrane I² statistics. Subgroup analyses, sensitivity analyses and Egger's test were used to explore heterogeneity, publication bias and influential studies. RESULTS The global prevalence of palliative care among cancer patients was 34.43% (95% CI: 26.60 to 42.25). Africa had the highest utilisation rate at 55.72% (95% CI: 35.45 to 75.99), while the USA had the lowest at 30.34% (95% CI: 19.83 to 40.86). Studies with sample sizes under 1000 showed a higher utilisation rate of 47.51% (95% CI: 36.69 to 58.32). Approximately 55% (95% CI: 35.26 to 74.80) of patients had a positive attitude towards palliative care, and 57.54% (95% CI: 46.09 to 69.00) were satisfied with the services. Positive attitudes were significantly associated with higher palliative care utilisation. CONCLUSION Only about one-third of cancer patients globally receive palliative care, with the highest utilisation in Africa. Nearly half of patients have a favourable attitude towards palliative care, and a similar proportion are satisfied with the services.
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Affiliation(s)
- Addisu Getie
- Department of Nursing, Debre Markos University, Debre Markos, Ethiopia
| | - Gizachew Yilak
- Department of Nursing, Woldia University, Woldia, Ethiopia
| | - Temesgen Ayenew
- Department of Nursing, Debre Markos University, Debre Markos, Ethiopia
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Khalil H, Hardman R, Livens M, Poon P, Spelten E, Blackberry I, O'Neill S. Development and Implementation of the Palliative Care Assessment Toolkit for Rural Aged Care Facilities in Australia. J Palliat Med 2025; 28:302-309. [PMID: 39745342 DOI: 10.1089/jpm.2024.0368] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 03/16/2025] Open
Abstract
Background: Palliative care (PC) in rural aged care facilities faces significant challenges, including late referrals and insufficient staff training, leading to a risk of suboptimal end-of-life care. Objectives: The aim of the project was to develop and implement an evidence-based Palliative Care Assessment Toolkit (PCAT) to improve PC in rural aged care facilities and evaluate its impact on care delivery and staff practices. Design: The study employed a mixed-methods design across three phases: codesign of the toolkit, implementation, and evaluation (using pre- and post-data). Baseline data were collected through an audit of decedents records and interviews with clinical staff. The toolkit was developed based on these findings and included resources in four domains: anticipatory care; advanced care planning, end-of-life care management, and staff training. Post-implementation, the toolkit's impact was assessed through repeat audit of resident records. Results: The baseline audit revealed issues around advanced care directives, regular reviews, and end-of-life care management. Five to seven months post-implementation of the PCAT toolkit, there were improvements in key areas, the commencement of end-of-life care planning (54% vs. 88%, p = 0.03), availability of medications (55% vs. 100%, p = 0.0016), provision of psychological (59% vs. 82%, p = 0.17), and spiritual support (14% vs. 44%, p = 0.05). Staff feedback indicated increased confidence in delivering PC. Conclusions: The PCAT improved the delivery of PC in rural aged care settings, enhancing both resident outcomes and staff practices. Further research is recommended to validate these findings across various settings and to explore the long-term sustainability and cost-effectiveness of such interventions.
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Affiliation(s)
- H Khalil
- School of Psychology and Public Health, Department of Public Health, La Trobe University, Melbourne, Australia
| | - R Hardman
- Violet Vines Marshman Centre for Rural Health Research, Rural Health School, La Trobe University, Victoria, Australia
- Sunraysia Community Health Services, Mildura, Australia
| | - M Livens
- Sunraysia Community Health Services, Mildura, Australia
| | - P Poon
- Department of Supportive & Palliative Care, Monash Health, Clayton, Australia
| | - E Spelten
- Violet Vines Marshman Centre for Rural Health Research, Rural Health School, La Trobe University, Victoria, Australia
| | - I Blackberry
- Care Economy Research Institute, La Trobe University, Wodonga, Australia
- John Richards Centre for Rural Ageing Research, La Trobe Rural Health School, La Trobe University, Wodonga, Australia
| | - S O'Neill
- Department of Community and Allied Health, La Trobe Rural Health School, La Trobe University, Bendigo, Australia
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Bateman EA, Gofton T, Casserly C, Nageswaran L, Morrow SA. A retrospective evaluation of patient characteristics and recommendations of a novel multidisciplinary clinic for persons with advanced disability from multiple sclerosis. Mult Scler Relat Disord 2025; 94:106287. [PMID: 39864317 DOI: 10.1016/j.msard.2025.106287] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 10/22/2024] [Revised: 12/04/2024] [Accepted: 01/22/2025] [Indexed: 01/28/2025]
Abstract
CONTEXT Persons with advanced multiple sclerosis (MS) require care beyond the disease modifying treatments offered in conventional MS clinics to address their complex physical and psychosocial needs. In the novel MS Comprehensive and Palliative Care (MSCPC) Program, an MS neurologist, palliative care specialist, and physiatrist collaborate to identify these needs and improve symptom control. OBJECTIVES To characterize the medical, physical, and psychosocial concerns of persons with advanced disability from MS and describe the recommended interventions of the MSCPC Program. METHODS Retrospective chart review of consecutive patients seen in the MSCPC Program from 2019 to 2022. RESULTS 54 patients were assessed over 74 clinic appointments. Patients' mean age was 59.4 ± 10.8 years (range 37-81) and mean duration of MS was 24.8 ± 11.8 years (range 2-52); 79.7% of patients had secondary progressive MS with median and mode disease severity (EDSS) of 7.5 and 8.5, respectively (range 4-9.5). 70.3% lived at home with a caregiver; the primary caregiver was the spouse for 51.4% of cases. 85.1% of patients received publicly funded in-home assistance for activities of daily living. The most prevalent sequelae of MS were incontinence (89.9%), spasticity (82.6%), and pain (78.3%). ≥1 symptom was addressed at 95.7% of appointments, most often pain (63.8%), spasticity (60.9%), and bowel (59.4%); medication deprescribing was recommended at 29.0% of appointments. Caregiver burnout was identified at 56.5% of appointments. CONCLUSION This novel program identified high prevalence of symptoms and made recommendations to improve symptom control at >95% of appointments, suggesting unmet symptom control needs in persons with advanced disability from MS.
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Affiliation(s)
- Emma A Bateman
- Department of Physical Medicine & Rehabilitation, Schulich School of Medicine & Dentistry, Western University, London, Ontario, Canada; Parkwood Institute, St. Joseph's Health Care London, London, Ontario, Canada; London Health Sciences Centre, London, Ontario, Canada.
| | - Teneille Gofton
- London Health Sciences Centre, London, Ontario, Canada; Department of Clinical Neurological Sciences, Schulich School of Medicine & Dentistry, Western University, London, Ontario, Canada
| | - Courtney Casserly
- London Health Sciences Centre, London, Ontario, Canada; Department of Clinical Neurological Sciences, Schulich School of Medicine & Dentistry, Western University, London, Ontario, Canada
| | - Luxshmi Nageswaran
- Parkwood Institute, St. Joseph's Health Care London, London, Ontario, Canada; Faculty of Health Sciences, Western University, London, Ontario, Canada
| | - Sarah A Morrow
- Department of Clinical Neurological Sciences, Cumming School of Medicine, University of Calgary, Calgary, Alberta, Canada
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Bressler T, Song J, Kamalumpundi V, Chae S, Song H, Tark A. Leveraging Artificial Intelligence/Machine Learning Models to Identify Potential Palliative Care Beneficiaries: A Systematic Review. J Gerontol Nurs 2025; 51:7-14. [PMID: 39746126 DOI: 10.3928/00989134-20241210-01] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 01/04/2025]
Abstract
PURPOSE The current review examined the application of artificial intelligence (AI) and machine learning (ML) techniques in palliative care, specifically focusing on models used to identify potential beneficiaries of palliative services among individuals with chronic and terminal illnesses. METHODS A systematic review was conducted across four electronic databases. Five studies met inclusion criteria, all of which applied AI/ML models to predict outcomes relevant to palliative care, such as mortality or the need for services. RESULTS Of 1,504 studies screened, five studies used supervised ML algorithms, whereas one used natural language processing with a deep learning model to identify potential palliative care candidates. The most common AI/ML algorithms included neural network-based models, logistic regression, and tree-based models. CONCLUSION AI and ML models offer promising avenues for identifying palliative care beneficiaries. As AI continues to evolve, its potential to reshape palliative care through early identification is significant, providing opportunities for timely and targeted care interventions. [Journal of Gerontological Nursing, 51(1), 7-14.].
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Valenti D, Gamberini L, Allegri D, Tartaglione M, Moggia F, Del Giudice D, Baroni R, Di Mirto CVF, Tamanti J, Rosa S, Paoletti S, Bruno L, Peterle C, Cuomo AMR, Bertini A, Giostra F, Mengoli F. Effects of 24/7 palliative care consultation availability on the use of emergency department and emergency medical services resources from non-oncological patients: a before-and-after observational cohort study. BMJ Support Palliat Care 2024; 14:e2788-e2797. [PMID: 37973206 DOI: 10.1136/spcare-2023-004412] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 06/01/2023] [Accepted: 10/23/2023] [Indexed: 11/19/2023]
Abstract
OBJECTIVES The non-oncological population is relatively under-represented among end-of-life (EOL) patients managed by palliative care (PC) services, and the effects of different PC delivery models are understudied in this population.This retrospective observational study on routinely collected data aimed at evaluating the effects of the extension from workday-only to 24/7 mixed hands-on and advisory home PC service on emergency department (ED) access and emergency medical services (EMS) interventions needed by non-oncological patients during their last 90 days of life, and their probability to die in hospital. METHODS A before-and-after design was adopted comparing preimplementation and postimplementation periods (2018-2019 and 2021-22).We used a difference-in-differences approach to estimate changes in ED access and EMS intervention rates in the postintervention period through binomial negative regression. The oncological population, always exposed to 24/7 PC, was used as a control. A robust Poisson regression model was adopted to investigate the differences regarding hospital mortality. The analyses were adjusted for age, sex and disease grouping by the system involved. Results were reported as incidence rate ratios (IRRs) and ORs. RESULTS A total of 2831 patients were enrolled in the final analysis.After the implementation of 24/7 home PC, both ED admissions (IRR=0.390, p<0.001) and EMS interventions (IRR=0.413, p<0.001) dropped, as well as the probability to die in hospital (OR=0.321, p<0.001). CONCLUSIONS The adoption of a 24/7 mixed hands-on and advisory model of home PC could have relevant effects in terms of ED access and EMS use by non-oncological EOL patients under PC. TRIAL REGISRATION NUMBER NCT05640076.
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Affiliation(s)
- Danila Valenti
- Palliative Care Network, AUSL di Bologna, Bologna, Italy
| | - Lorenzo Gamberini
- Department of Anesthesia, Intensive Care and Prehospital Emergency, Maggiore Hospital Carlo Alberto Pizzardi, Bologna, Italy
| | - Davide Allegri
- Department of Clinical Governance and Quality, AUSL di Bologna, Bologna, Italy
| | - Marco Tartaglione
- Department of Anesthesia, Intensive Care and Prehospital Emergency, Maggiore Hospital Carlo Alberto Pizzardi, Bologna, Italy
| | | | - Donatella Del Giudice
- EMS 118 Regional Programme, Maggiore Hospital Carlo Alberto Pizzardi, Bologna, Italy
| | - Raffaella Baroni
- Management Staff - Business Information Systems, AUSL di Bologna, Bologna, Italy
| | | | - Jacopo Tamanti
- Palliative Care Network, AUSL di Bologna, Bologna, Italy
| | - Silvia Rosa
- Palliative Care Network, AUSL di Bologna, Bologna, Italy
| | | | - Luigi Bruno
- Palliative Care Network, AUSL di Bologna, Bologna, Italy
| | - Chiara Peterle
- Palliative Care Network, AUSL di Bologna, Bologna, Italy
| | | | - Alessio Bertini
- Emergency Medicine, Emergency Department, Maggiore Hospital Carlo Alberto Pizzardi, Bologna, Italy
| | - Fabrizio Giostra
- Emergency Medicine, Emergency Department, IRCCS Azienda Ospedaliero-Universitaria di Bologna, Bologna, Italy
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Slominska A, Loban K, Kinsella EA, Ho J, Sandal S. Supportive care in transplantation: A patient-centered care model to better support kidney transplant candidates and recipients. World J Transplant 2024; 14:97474. [PMID: 39697448 PMCID: PMC11438939 DOI: 10.5500/wjt.v14.i4.97474] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 05/31/2024] [Revised: 07/31/2024] [Accepted: 08/06/2024] [Indexed: 09/20/2024] Open
Abstract
Kidney transplantation (KT), although the best treatment option for eligible patients, entails maintaining and adhering to a life-long treatment regimen of medications, lifestyle changes, self-care, and appointments. Many patients experience uncertain outcome trajectories increasing their vulnerability and symptom burden and generating complex care needs. Even when transplants are successful, for some patients the adjustment to life post-transplant can be challenging and psychological difficulties, economic challenges and social isolation have been reported. About 50% of patients lose their transplant within 10 years and must return to dialysis or pursue another transplant or conservative care. This paper documents the complicated journey patients undertake before and after KT and outlines some initiatives aimed at improving patient-centered care in transplantation. A more cohesive approach to care that borrows its philosophical approach from the established field of supportive oncology may improve patient experiences and outcomes. We propose the "supportive care in transplantation" care model to operationalize a patient-centered approach in transplantation. This model can build on other ongoing initiatives of other scholars and researchers and can help advance patient-centered care through the entire care continuum of kidney transplant recipients and candidates. Multi-dimensionality, multi-disciplinarity and evidence-based approaches are proposed as other key tenets of this care model. We conclude by proposing the potential advantages of this approach to patients and healthcare systems.
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Affiliation(s)
- Anita Slominska
- MEDIC Program, Research Institute of the McGill University Health Centre, Montreal H4A3J1, QC, Canada
| | - Katya Loban
- MEDIC Program, Research Institute of the McGill University Health Centre, Montreal H4A3J1, QC, Canada
| | - Elizabeth Anne Kinsella
- Institute of Health Sciences Education, Faculty of Medicine and Health Sciences, McGill University, Montreal H4A3J1, QC, Canada
| | - Julie Ho
- Department of Medicine, University of Manitoba, Winnipeg R3A1R9, MB, Canada
| | - Shaifali Sandal
- Department of Medicine, McGill University Health Centre, Montreal H4A3J1, QC, Canada
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Paque K, Baudry L, Van Fraeyenhove F, Heyrman B. Barriers and facilitators to early initiation of palliative care as perceived by nurses working on pneumology and nephrology, a descriptive qualitative study. Scand J Caring Sci 2024; 38:948-959. [PMID: 39192524 DOI: 10.1111/scs.13296] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 02/27/2024] [Accepted: 08/10/2024] [Indexed: 08/29/2024]
Abstract
AIMS AND OBJECTIVES Initiation of palliative care early in the disease trajectory is beneficial for patients with a life-limiting disease. However, palliative care is still introduced rather late or not at all. Therefore, this study aims to explore barriers and facilitators to early initiation of palliative care as perceived by nurses working on pneumology and nephrology. METHODS A descriptive interview-based study was conducted from a critical realist perspective until data sufficiency was reached. Fifteen nurses presented and discussed a patient for whom palliative care was initiated too late. Template analysis was conducted to develop themes and subthemes. RESULTS Five key themes were extracted: (1) communication, (2) fear, (3) personal beliefs about life and death, (4) ambiguity in terminology and (5) workload and time pressure. Barriers related to poor interdisciplinary communication were therapeutic obstinance, hierarchy, unawareness of the patient's wishes and fear of saying something inappropriate. Other barriers were patients' religious beliefs which often hindered the use of sedatives or morphine and led to discomfort and time restraints. A palliative support team in hospital and advance care planning (ACP) were enablers for early palliative care. STUDY LIMITATIONS This study started from a negative experience, leading to identification of a lot of barriers and only a few facilitators. The limited sample size and the restriction to two wards within one single hospital limit the diversity of perspectives and the generalisability of the findings. CONCLUSION More attention is needed for ACP and interdisciplinary communication. Palliative care, including ACP, and interdisciplinary communication should be included in the basic curricula of all healthcare professional courses. Further research is needed to explore barriers and facilitators to early initiation of palliative care in other healthcare settings and patient populations. This is crucial in order to develop and implement sustainable interventions for specific groups of patients.
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Affiliation(s)
- Kristel Paque
- Faculty of Medicine and Health Science, University of Antwerp, Wilrijk, Belgium
- Hast, Associate Degree Nursing, Hasselt, Belgium
| | - Lars Baudry
- Faculty of Medicine and Health Science, University of Antwerp, Wilrijk, Belgium
- Department of Haematology, ZNA-Middelheim, Antwerp, Belgium
| | | | - Bert Heyrman
- Department of Haematology, ZNA-Middelheim, Antwerp, Belgium
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Akhter R, Stukel TA, Chung H, Bell CM, Detsky AS, Downar J, Isenberg SR, Lapp J, Mokhtarnia M, Stall N, Tanuseputro P, Quinn KL. Comparison of physician-delivered models of virtual and home-based in-person care for adults in the last 90 days of life with cancer and terminal noncancer illness during the COVID-19 pandemic. PLoS One 2024; 19:e0301813. [PMID: 39602394 PMCID: PMC11602086 DOI: 10.1371/journal.pone.0301813] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 12/08/2023] [Accepted: 03/24/2024] [Indexed: 11/29/2024] Open
Abstract
OBJECTIVE To measure the association between types of serious illness and the use of different physician-delivered care models near the EOL during the COVID-19 pandemic. DESIGN, SETTING AND PARTICIPANTS Population-based cohort study using health administrative datasets in Ontario, Canada, for adults aged ≥18 years in their last 90 days of life who died of cancer or terminal noncancer illness and received physician-delivered care models near the end-of-life between March 14, 2020 and January 24, 2022. EXPOSURE The type of serious illness (cancer or terminal noncancer illness). MAIN OUTCOME Physician-delivered care models for adults in the last 90 days of life (exclusively virtual, exclusively home-based in-person, or mixed). RESULTS The study included 75,930 adults (median age 78 years, 49% female, cancer n = 58,894 [78%], noncancer illness n = 17,036 [22%]). A higher proportion of people with cancer (39.3%) received mixed model of care compared to those with noncancer illnesses (chronic organ failure 24.4%, dementia 37.9%, multimorbidity 28%). Compared to people with cancer, people with chronic organ failure (adjusted odds ratio [aOR], 1.61, 95% CI: 1.54 to 1.68) and those with multimorbidity ([aOR], 1.49, 95% CI: 1.39 to 1.59) had a higher odds of receiving virtual care than a mixed model of care. People with dementia had a higher odds of home-based in-person care than a mixed model of care ([aOR], 1.47, 95% CI 1.27, 1.71) and virtual care ([aOR], 1.40, 95% CI 1.20-1.62) compared to people with cancer. CONCLUSION A person's type of serious illness was associated with different care models near the end-of-life. This study demonstrates persistent disease-specific differences in care delivery or possibly the tailoring of models of care in the last 90 days of life based on a person's specific care needs.
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Affiliation(s)
- Rabia Akhter
- Department of Medicine, Sinai Health System, Toronto, ON, Canada
| | - Thérèse A. Stukel
- ICES, Toronto and Ottawa, ON, Canada
- Insitute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada
| | | | - Chaim M. Bell
- Department of Medicine, Sinai Health System, Toronto, ON, Canada
- Insitute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada
- Department of Medicine, University of Toronto, Toronto, ON, Canada
| | - Allan S. Detsky
- Department of Medicine, Sinai Health System, Toronto, ON, Canada
- Insitute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada
- Department of Medicine, University of Toronto, Toronto, ON, Canada
| | - James Downar
- Division of Palliative Care, Dept of Medicine, University of Ottawa, Ottawa, ON, Canada
- Bruyere Research Institute, Ottawa, ON, Canada
- Queensland University of Technology School of Law, Queensland, Australia
| | - Sarina R. Isenberg
- Division of Palliative Care, Dept of Medicine, University of Ottawa, Ottawa, ON, Canada
- Bruyere Research Institute, Ottawa, ON, Canada
- Department of Family and Community Medicine, University of Toronto, Toronto, ON, Canada
| | - John Lapp
- Department of Medicine, Sinai Health System, Toronto, ON, Canada
- Northern Ontario School of Medicine University, Sudbury, ON, Canada
| | - Media Mokhtarnia
- Department of Medicine, Sinai Health System, Toronto, ON, Canada
| | - Nathan Stall
- Department of Medicine, Sinai Health System, Toronto, ON, Canada
- Department of Medicine, University of Toronto, Toronto, ON, Canada
- Women’s Age Lab, Women’s College Hospital, Toronto, ON, Canada
| | - Peter Tanuseputro
- ICES, Toronto and Ottawa, ON, Canada
- Insitute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada
- Division of Palliative Care, Dept of Medicine, University of Ottawa, Ottawa, ON, Canada
- Bruyere Research Institute, Ottawa, ON, Canada
- Ottawa Hospital Research Institute, Ottawa, ON, Canada
| | - Kieran L. Quinn
- Department of Medicine, Sinai Health System, Toronto, ON, Canada
- ICES, Toronto and Ottawa, ON, Canada
- Insitute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada
- Department of Medicine, University of Toronto, Toronto, ON, Canada
- Temmy Latner Centre for Palliative Care, Sinai Health System, Toronto, ON, Canada
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Lapp JM, Stukel TA, Chung H, Lee S, Lunsky Y, Bell CM, Cheung AM, Detsky AS, Goulding S, Herridge M, Ahmad A, Razak F, Verma AA, Brown HK, Bobos P, Quinn KL. Comparison of long-term healthcare use among older adults with disabilities following hospitalization for COVID-19, sepsis, or influenza: a population-based cohort study. LANCET REGIONAL HEALTH. AMERICAS 2024; 39:100910. [PMID: 39497837 PMCID: PMC11532264 DOI: 10.1016/j.lana.2024.100910] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Subscribe] [Scholar Register] [Received: 06/13/2024] [Revised: 09/23/2024] [Accepted: 10/02/2024] [Indexed: 11/07/2024]
Abstract
Background People with disabilities are at elevated risk of adverse short-term outcomes following hospitalization for acute infectious illness. No prior studies have compared long-term healthcare use among this high-risk population. We compared the healthcare use of adults with disabilities in the one year following hospitalization for COVID-19 vs. sepsis vs. influenza. Methods We performed a population-based cohort study using linked clinical and health administrative databases in Ontario, Canada of all adults with pre-existing disability (physical, sensory, or intellectual) hospitalized for COVID-19 (n = 22,551, median age 69 [IQR 57-79], 47.9% female) or sepsis (n = 100,669, median age 77 [IQR 66-85], 54.8% female) between January 25, 2020, and February 28, 2022, and for influenza (n = 11,216, median age 78 [IQR 67-86], 54% female) or sepsis (n = 49,326, median age 72 [IQR 62-82], 45.8% female) between January 1, 2014 and March 25, 2019. The exposure was hospitalization for laboratory-confirmed SARS-CoV-2 or influenza, or sepsis (not secondary to COVID-19 or influenza). Outcomes were ambulatory care visits, diagnostic testing, emergency department visits, hospitalization, palliative care visits and death within 1 year. Rates of these outcomes were compared across exposure groups using propensity-based overlap weighted Poisson and Cox proportional hazards models. Findings Among older adults with pre-existing disability, hospitalization for COVID-19 was associated with lower rates of ambulatory care visits (adjusted rate ratio (aRR) 0.88, 95% confidence interval (CI), 0.87-0.90), diagnostic testing (aRR 0.86, 95% CI, 0.84-0.89), emergency department visits (aRR 0.91, 95% CI, 0.84-0.97), hospitalization (aRR 0.74, 95% CI, 0.71-0.77), palliative care visits (aRR 0.71, 95% CI, 0.62-0.81) and low hazards of death (adjusted hazard ratio (aHR) 0.71, 95% 0.68-0.75), compared to hospitalization for sepsis during the COVID-19 pandemic. Rates of healthcare use among those hospitalized for COVID-19 varied compared to those hospitalized for influenza or sepsis prior to the pandemic. Interpretation This study of older adults with pre-existing disabilities hospitalized for acute infectious illness found that COVID-19 was not associated with higher rates of healthcare use or mortality over the one year following hospital discharge compared to those hospitalized for sepsis. However, hospitalization for COVID-19 was associated with higher rates of ambulatory care use and mortality when compared to influenza. As COVID-19 enters an endemic phase, the associated long-term health resource use and risks in the contemporary era are reassuringly similar to sepsis and influenza, even among people with pre-existing disabilities. Funding This study was supported by ICES, which is funded by an annual grant from the Ontario Ministry of Health and the Ministry of Long-Term Care. This study also received funding from the Canadian Institutes of Health Research (CIHR GA4-177772).
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Affiliation(s)
- John M. Lapp
- Department of Medicine, Sinai Health and University Health Network, Toronto, Ontario, Canada
| | - Thérèse A. Stukel
- Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Ontario, Canada
- ICES, Toronto, Ontario, Canada
| | | | | | - Yona Lunsky
- ICES, Toronto, Ontario, Canada
- Azrieli Adult Neurodevelopmental Centre, Centre for Addiction & Mental Health, Toronto, Ontario, Canada
- Department of Psychiatry, Temerty Faculty of Medicine, Toronto, Ontario, Canada
| | - Chaim M. Bell
- Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Ontario, Canada
- ICES, Toronto, Ontario, Canada
- Department of Medicine, Sinai Health and University Health Network, Toronto, Ontario, Canada
| | - Angela M. Cheung
- ICES, Toronto, Ontario, Canada
- Department of Medicine, Temerty Faculty of Medicine, Toronto, Ontario, Canada
| | - Allan S. Detsky
- Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Ontario, Canada
- Department of Medicine, Sinai Health and University Health Network, Toronto, Ontario, Canada
- Department of Medicine, Temerty Faculty of Medicine, Toronto, Ontario, Canada
| | | | - Margaret Herridge
- ICES, Toronto, Ontario, Canada
- Department of Medicine, Temerty Faculty of Medicine, Toronto, Ontario, Canada
| | - Aisha Ahmad
- Department of Medicine, Sinai Health and University Health Network, Toronto, Ontario, Canada
| | - Fahad Razak
- Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Ontario, Canada
- Department of Medicine, Temerty Faculty of Medicine, Toronto, Ontario, Canada
- Li Ka Shing Knowledge Institute, Unity Health Toronto, Toronto, Ontario, Canada
- Department of Medicine, St. Michael's Hospital, Toronto, Ontario, Canada
| | - Amol A. Verma
- Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Ontario, Canada
- Department of Medicine, Temerty Faculty of Medicine, Toronto, Ontario, Canada
- Li Ka Shing Knowledge Institute, Unity Health Toronto, Toronto, Ontario, Canada
- Department of Medicine, St. Michael's Hospital, Toronto, Ontario, Canada
- Temerty Centre for AI Research and Education in Medicine, Temerty Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada
| | - Hilary K. Brown
- Department of Health & Society, University of Toronto Scarborough, Toronto, Ontario, Canada
- Dalla Lana School of Public Health, University of Toronto, Toronto, Ontario, Canada
- Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Ontario, Canada
- ICES, Toronto, Ontario, Canada
| | - Pavlos Bobos
- Deparment of Health and Rehabilitation Sciences, Western University, London, Ontario, Canada
| | - Kieran L. Quinn
- Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Ontario, Canada
- ICES, Toronto, Ontario, Canada
- Department of Medicine, Sinai Health and University Health Network, Toronto, Ontario, Canada
- Department of Medicine, Temerty Faculty of Medicine, Toronto, Ontario, Canada
- Temmy Latner Centre for Palliative Care, Sinai Health System, University of Toronto, Toronto, Ontario, Canada
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10
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McConnell T, Mendieta CV, de Vries E, Calvache JA, Prue G, Ahmedzai S, Reid J. Developing research priorities for palliative care in Colombia: a priority setting partnership approach. BMC Palliat Care 2024; 23:194. [PMID: 39090640 PMCID: PMC11295305 DOI: 10.1186/s12904-024-01534-z] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 02/09/2024] [Accepted: 07/29/2024] [Indexed: 08/04/2024] Open
Abstract
BACKGROUND A recent Lancet commission called for more research on palliative care in low- and middle-income (LMIC) countries such as Colombia. A research priority setting approach has been recommended by The Global Forum for Health Research to address the huge gap in research output between LMIC and high-income countries, with influential health service bodies recommending the active involvement of non-research expert stakeholders in establishing research priorities to address service user needs. METHOD Priority setting partnership (PSP) following the four stages of the James Lind Alliance methodology; establishing the partnership, identifying evidence uncertainties, refining questions and uncertainties, and prioritization. Data from MS forms were analysed using descriptive statistics. RESULTS A total of 33 stakeholders attended an online PSP workshop and completed the Mentimeter exercise in Microsoft Teams. A total of 48 attended the subsequent in person prioritisation exercise in urban Bogota (n = 22) and rural Popayan (n = 25). The stakeholders were a diverse group of health professionals (physicians, medical students, nurses, dentists, physiotherapists, nutritionist, occupational and speech therapists), financial and administrative staff and patients with life-limiting illness and caregivers. Top research priorities included patient and caregiver needs, service provider education and training, and better integration of palliative care with cancer and non-cancer services. The key challenges included a lack of interest in palliative care research, along with funding, time and resource constraints. Key solutions included collaboration across disciplines and settings, highlighting benefits of palliative research to help secure adequate resources, and multicentre, mixed method research, with patient involvement from the research development stage. CONCLUSION The findings of this PSP should be disseminated among palliative care associations worldwide to inform international multicentre studies, and among governmental and nongovernmental organisations that promote research in Colombia. A focus on patient and family caregiver palliative care needs in Colombia should be prioritised.
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Affiliation(s)
- Tracey McConnell
- Marie Curie Hospice Belfast, Belfast, UK.
- School of Nursing and Midwifery Queen's University Belfast, Belfast, UK.
| | - Cindy V Mendieta
- Department of Clinical Epidemiology and Biostatistics, Faculty of Medicine, Pontificia Universidad Javeriana, Bogota, Colombia
- Department of Nutrition and Biochemistry, Faculty of Science, Pontificia Universidad Javeriana, Bogota, Colombia
| | - Esther de Vries
- Department of Clinical Epidemiology and Biostatistics, Faculty of Medicine, Pontificia Universidad Javeriana, Bogota, Colombia
| | - Jose A Calvache
- Department of Anesthesiology, Faculty of Health Sciences, Universidad del Cauca, Popayan, Colombia
- Department of Anesthesiology, Erasmus University Medical Center Rotterdam, Rotterdam, The Netherlands
| | - Gillian Prue
- School of Nursing and Midwifery Queen's University Belfast, Belfast, UK
| | - Sam Ahmedzai
- Department of Oncology, The University of Sheffield, Sheffield, UK
| | - Joanne Reid
- School of Nursing and Midwifery Queen's University Belfast, Belfast, UK
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11
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Biney A, Sarfo JO, Poku CA, Deegbe DA, Atibila F, Ti-Enkawol Nachinab G, Anaba E, Dzansi G, Attafuah PYA. Challenges and coping strategies when caring for terminally ill persons with cancer: perspectives of family caregivers. BMC Palliat Care 2024; 23:175. [PMID: 39020352 PMCID: PMC11253565 DOI: 10.1186/s12904-024-01518-z] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 09/21/2023] [Accepted: 07/12/2024] [Indexed: 07/19/2024] Open
Abstract
INTRODUCTION Terminal illness is an irreversible illness that, without life-sustaining procedures, usually results in death or permanent disability from which recovery is unlikely. When involved, family caregivers are believed to improve health outcomes, such as reduced hospitalization, and establishing a patient's initial access to professional treatment services. However, caring for a patient with a terminal illness is viewed as one of the most difficult aspects of providing care. This study aimed to identify the challenges, and coping strategies developed by family caregivers to cope with the care of the terminally ill person. METHODS An exploratory descriptive qualitative approach was used. Twenty (20) family caregivers voluntarily participated in the study from the Korle-Bu Teaching Hospital. Semi-structured interviews were conducted with the participants. The transcribed interviews were then analysed using thematic analysis. RESULTS From the analysis, three main themes emerged: challenges, coping strategies, and social support. These themes encompassed sixteen subthemes including financial burden, bad health conditions, faith and prayer, and support from health professionals. From the study, both male and female family caregivers narrated that providing care for sick relatives undergoing terminal disease is characterized as a daily duty demanding one's time and fraught with emotional strain. In addition, even though it was a difficult job, family members who provided care for ailing relatives never gave up, citing responsibility, the importance of family, and religious beliefs as the primary motivations for doing so. CONCLUSION The difficulties and demands of family caregiving roles for terminally ill relatives are complex and multifactorial. The findings call for multidisciplinary professional attention for family caregivers and policies that will support their lives holistically.
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Affiliation(s)
| | - Jacob Owusu Sarfo
- Department of Health, Physical Education and Recreation, University of Cape Coast, Cape Coast, Ghana
| | - Collins Atta Poku
- School of Nursing and Midwifery, Kwame Nkrumah University of Science and Technology, Kumasi, Ghana
| | - David Atsu Deegbe
- School of Nursing and Midwifery, University of Ghana, Legon, Accra, Ghana
| | - Fidelis Atibila
- School of Life and Medical sciences Centre for postgraduate medicine and Public Health, University of Hertfordshire UK, College Lane Campus, Hertfordshire, UK
| | - Gilbert Ti-Enkawol Nachinab
- Department of General Nursing, School of Nursing and Midwifery, University for Development Studies, Tamale, Ghana
| | - Emmanuel Anaba
- School of Public Health, University of Ghana, Accra, Ghana
| | - Gladys Dzansi
- Ghana College of Nurses and Midwives, Accra, Ghana
- School of Nursing and Midwifery, University of Ghana, Legon, Accra, Ghana
| | - Priscilla Yeye Adumoah Attafuah
- Ghana College of Nurses and Midwives, Accra, Ghana.
- School of Nursing and Midwifery, University of Ghana, Legon, Accra, Ghana.
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12
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Sivanathan V, Smallwood N, Ong J, Wee E, Zentner D. Heart failure and the cost of dying: must the ferryman always be paid? Intern Med J 2024; 54:1077-1086. [PMID: 38351669 DOI: 10.1111/imj.16338] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 10/19/2023] [Accepted: 01/02/2024] [Indexed: 07/18/2024]
Abstract
BACKGROUND Provision of palliative care in chronic heart failure (CHF) can support complex decision-making, significantly improve quality of life and may lower healthcare costs. AIMS To examine whether healthcare costs differed in terminal admissions according to the adoption of a palliative approach. DESIGN Retrospective review of medical records and costing data for all admissions resulting in death from CHF (July 2011 to December 2019), analysed as two groups (2011-2016 and 2016-2019) because of background changes in costings. SETTING Admissions with CHF resulting in death in an Australian tertiary referral centre. RESULTS The cohort (n = 439) were elderly (median age 83.7 years, interquartile range (IQR) = 77.6-88.7 years) and mostly men (54.9%). Half (230, 52.4%) were referred to a specialist palliative care team, whereas over a third (172, 39.2%) received a palliative approach. Receiving a palliative approach was associated with a nonstatistically significant lower admission cost (AU$12 710 vs AU$15 978; P = 0.19) between 2011 and 2016 (n = 101, 38.8%) and a significantly lower cost (AU$11 319 vs AU$15 978; P < 0.01) between 2016 and 2019 (n = 71, 39.7%). Intensive care admission resulted in the single greatest additional cost at AU$14 624 (IQR = AU$4130-AU$44 197) (n = 48, 2011-2016). Median terminal admission cost was lower for patients with comfort goals of care (P < 0.01), without life-sustaining interventions (P < 0.01) or who received a palliative approach (P < 0.01). Referral to inpatient specialist palliative care or receiving a palliative approach resulted in comparable admission costings (AU$11 621 [IQR = AU$4705-AU$32 457] and AU$11 466 [IQR = AU$4973-AU$25 614]). CONCLUSION A palliative approach in terminal CHF admission may improve quality at the end of life and decrease costs associated with care.
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Affiliation(s)
| | - Natasha Smallwood
- Department of Respiratory Medicine, The Alfred Hospital, Melbourne, Victoria, Australia
- Department of Allergy, Immunology and Respiratory Medicine, Central Clinical School, The Alfred Hospital, Monash University, Melbourne, Victoria, Australia
| | - Jeffrey Ong
- Clinical Costing, Health Intelligence, The Royal Melbourne Hospital, Melbourne, Victoria, Australia
| | - Elin Wee
- Clinical Costing, Health Intelligence, The Royal Melbourne Hospital, Melbourne, Victoria, Australia
| | - Dominica Zentner
- Department of Medicine, University of Melbourne, Melbourne, Victoria, Australia
- Department of Cardiology, The Royal Melbourne Hospital, Melbourne, Victoria, Australia
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13
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Kenny P, Street DJ, Hall J, Agar MR, Phillips J. Community Preferences for the Care of Older People at the End of Life: How Important is the Disease Context? THE PATIENT 2024; 17:407-419. [PMID: 38498242 PMCID: PMC11190000 DOI: 10.1007/s40271-024-00675-w] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Grants] [Track Full Text] [Subscribe] [Scholar Register] [Accepted: 01/25/2024] [Indexed: 03/20/2024]
Abstract
BACKGROUND Population preferences for care at the end of life can inform palliative care policy and direction. Research investigating preferences for care at the end of life has focused predominantly on the context of advanced cancer, with relatively little attention to other life-limiting illnesses that are common causes of death. OBJECTIVES We aimed to investigate preferences for the care of older people at the end of life in three different disease contexts. The purpose was to understand if population preferences for care in the last 3 weeks of life would differ for patients dying from cancer, heart failure or dementia. METHODS Three discrete choice experiments were conducted in Australia with a general population sample using similar methods but different end-of-life disease contexts. Some attributes were common across the three experiments and others differed to accommodate the specific disease context. Each survey was completed by a different panel sample aged ≥45 years (cancer, n = 1548; dementia, n = 1549; heart failure, n = 1003). Analysis was by separate mixed logit models. RESULTS The most important attributes across all three surveys were costs to the patient and family, patient symptoms and informal carer stress. The probability of choosing an alternative was lowest (0.18-0.29) when any one of these attributes was at the least favourable level, holding other attributes constant across alternatives. The cancer survey explored symptoms more specifically and found patient anxiety with a higher relative importance score than the symptom attribute of pain. Dementia was the only context where most respondents preferred to not have a medical intervention to prolong life; the probability of choosing an alternative with a feeding tube was 0.40 (95% confidence interval 0.36-0.43). CONCLUSIONS This study suggests a need for affordable services that focus on improving patient and carer well-being irrespective of the location of care, and this message is consistent across different disease contexts, including cancer, heart failure and dementia. It also suggests some different considerations in the context of people dying from dementia where medical intervention to prolong life was less desirable.
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Affiliation(s)
- Patricia Kenny
- Centre for Health Economics Research and Evaluation (CHERE), University of Technology Sydney, Broadway, PO Box 123, Sydney, NSW, 2007, Australia.
| | - Deborah J Street
- Centre for Health Economics Research and Evaluation (CHERE), University of Technology Sydney, Broadway, PO Box 123, Sydney, NSW, 2007, Australia
| | - Jane Hall
- Centre for Health Economics Research and Evaluation (CHERE), University of Technology Sydney, Broadway, PO Box 123, Sydney, NSW, 2007, Australia
| | - Meera R Agar
- Improving Palliative, Aged and Chronic Care through Clinical Research and Translation (IMPACCT), University of Technology Sydney, Sydney, NSW, Australia
| | - Jane Phillips
- Centre for Healthcare Transformation, School of Nursing, Queensland University of Technology, Brisbane, QLD, Australia
- University of Technology Sydney (IMPACCT), Sydney, NSW, Australia
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14
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Hua M, Guo L, Ing C, Lackraj D, Wang S, Morrison RS. Specialist Palliative Care Use and End-of-Life Care in Patients With Metastatic Cancer. J Pain Symptom Manage 2024; 67:357-365.e15. [PMID: 38278187 PMCID: PMC11032225 DOI: 10.1016/j.jpainsymman.2024.01.029] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 11/16/2023] [Revised: 01/16/2024] [Accepted: 01/17/2024] [Indexed: 01/28/2024]
Abstract
CONTEXT For patients with advanced cancer, high intensity treatment at the end of life is measured as a reflection of the quality of care. Use of specialist palliative care has been promoted to improve care quality, but whether its use is associated with decreased treatment intensity on a population-level is unknown. OBJECTIVES To determine whether receipt of specialist palliative care use is associated with differences in end-of-life quality metrics in patients with metastatic cancer. METHODS Retrospective propensity-matched cohort of patients age ≥ 65 who died with metastatic cancer in U.S. hospitals with palliative care programs that participated in the National Palliative Care Registry in 2018-2019. Cox proportional hazards regression was used to assess the impact of specialist palliative care on use of chemotherapy in the last 14 days of life, use of intensive care unit (ICU) in the last 30 days of life, use of hospice, and hospice enrollment ≥ three days. RESULTS After 1:2 matching, our cohort consisted of 15,878 exposed and 31,756 unexposed patients. Receipt of specialist palliative care was associated with a decrease in use of chemotherapy (adjusted hazard ratio (aHR) 0.59 [0.50-0.70]) and ICU at the end of life (aHR 0.86 [0.80-0.92]), and an increase in hospice use (aHR 1.92 [1.85-1.99]) and hospice enrollment for ≥three days (aHR 2.00 [1.93-2.07]). CONCLUSION On a population-level, use of specialist palliative care was associated with improved metrics for quality end-of-life care for patients dying with metastatic cancer, underscoring the importance of its integration into cancer care.
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Affiliation(s)
- May Hua
- Department of Anesthesiology (M.H., C.I.), College of Physicians and Surgeons, Department of Epidemiology, Mailman School of Public Health, Columbia University, New York, New York, USA.
| | - Ling Guo
- Department of Anesthesiology (L.G.), College of Physicians and Surgeons, Columbia University, New York, New York, USA
| | - Caleb Ing
- Department of Anesthesiology (M.H., C.I.), College of Physicians and Surgeons, Department of Epidemiology, Mailman School of Public Health, Columbia University, New York, New York, USA
| | - Deven Lackraj
- Department of Anesthesiology (D.L.), Columbia University College of Physicians and Surgeons, Columbia University, New York, New York, USA
| | - Shuang Wang
- Department of Biostatistics (S.W.), Mailman School of Public Health, Columbia University, New York, New York, USA
| | - R Sean Morrison
- Icahn School of Medicine at Mount Sinai and James J Peters VA (R.S.M.), Bronx, New York, USA
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15
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Ginggeaw S, LeBlanc R. The determinants of actual place of death among noncancer patients with end-stage chronic health conditions: a scoping review. Palliat Care Soc Pract 2024; 18:26323524241236964. [PMID: 38510469 PMCID: PMC10953110 DOI: 10.1177/26323524241236964] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 08/24/2023] [Accepted: 02/15/2024] [Indexed: 03/22/2024] Open
Abstract
A home is a preferred place of death by most people. Nurses play a key role in supporting end-of-life home care, yet less is known about the factors that determine home as a place of death. This scoping review describes the percentage of actual places of death and determines social factors related to home as the place of death among noncancer patients with end-stage chronic health conditions. Inclusion criteria included (1) noncancer chronic illness conditions, (2) outcomes of place of death, and (3) factors that determine home as a place of death. Sources of evidence included PubMed, CINAHL, and Web of Science databases, which were searched in May 2022, and additional searches from May 2022 to November 2023.The JBI scoping review guide (2020) and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Scoping Review extension were used. Twenty-eight studies were included in this analysis. The range of percentages is varied within the same place of death among the sample. Two major constructs that determine a home as a place of death were identified: preceding factors and social capital. The results suggest that the place of death among noncancer patients with end-stage chronic health conditions should be continued to be understood. Two constructs determined home as a place of death and are considered as a fundamental to increasing equal accessibility in the initiation of palliative care services to promote home death and meet end-of-life care goals.
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Affiliation(s)
- Sangduan Ginggeaw
- Elaine Marieb College of Nursing, University of Massachusetts Amherst, 651 North Pleasant Street, Amherst, MA 01003, USA
| | - Raeann LeBlanc
- Elaine Marieb College of Nursing, University of Massachusetts Amherst, Amherst, MA, USA
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16
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Rodin R, Stukel TA, Chung H, Bell CM, Detsky AS, Isenberg S, Quinn KL. Attending physicians' annual service volume and use of virtual end-of-life care: A population-based cohort study in Ontario, Canada. PLoS One 2024; 19:e0299826. [PMID: 38457383 PMCID: PMC10923452 DOI: 10.1371/journal.pone.0299826] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 08/08/2023] [Accepted: 02/15/2024] [Indexed: 03/10/2024] Open
Abstract
IMPORTANCE Physicians and their practice behaviors influence access to healthcare and may represent potentially modifiable targets for practice-changing interventions. Use of virtual care at the end-of-life significantly increased during the COVID-19 pandemic, but its association with physician practice behaviors, (e.g., annual service volume) is unknown. OBJECTIVE Measure the association of physicians' annual service volume with their use of virtual end-of-life care (EOLC) and the magnitude of physician-attributable variation in its use, before and during the pandemic. DESIGN, SETTING AND PARTICIPANTS Population-based cohort study using administrative data of all physicians in Ontario, Canada who cared for adults in the last 90 days of life between 01/25/2018-12/31/2021. Multivariable modified Poisson regression models measured the association between attending physicians' use of virtual EOLC and their annual service volume. We calculated the variance partition coefficients for each regression and stratified by time period before and during the pandemic. EXPOSURE Annual service volume of a person's attending physician in the preceding year. MAIN OUTCOMES AND MEASURES Delivery of ≥1 virtual EOLC visit by a person's attending physician and the proportion of variation in its use attributable to physicians. RESULTS Among the 35,825 unique attending physicians caring for 315,494 adults, use of virtual EOLC was associated with receiving care from a high compared to low service volume attending physician; the magnitude of this association diminished during the pandemic (adjusted RR 1.25 [95% CI 1.14, 1.37] pre-pandemic;1.10 (95% CI 1.08, 1.12) during the pandemic). Physicians accounted for 36% of the variation in virtual EOLC use pre-pandemic and 12% of this variation during the pandemic. CONCLUSIONS AND RELEVANCE Physicians' annual service volume was associated with use of virtual EOLC and physicians accounted for a substantial proportion of the variation in its use. Physicians may be appropriate and potentially modifiable targets for interventions to modulate use of EOLC delivery.
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Affiliation(s)
- Rebecca Rodin
- Department of Geriatrics and Palliative Medicine, Icahn School of Medicine at Mount Sinai, New York, NY, United States of America
- Department of Medicine, University of Toronto, Toronto, ON, Canada
| | - Thérèse A. Stukel
- ICES, Toronto and Ottawa, ON, Canada
- Temmy Latner Centre for Palliative Care, Toronto, ON, Canada
| | | | - Chaim M. Bell
- Department of Medicine, University of Toronto, Toronto, ON, Canada
- Department of Medicine, Sinai Health System and University Health Network, Toronto, ON, Canada
- Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada
| | - Allan S. Detsky
- Department of Medicine, University of Toronto, Toronto, ON, Canada
- Department of Medicine, Sinai Health System and University Health Network, Toronto, ON, Canada
- Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada
| | - Sarina Isenberg
- Division of Palliative Care, Dept of Medicine, University of Ottawa, Ottawa, ON, Canada
- Bruyere Research Institute, Ottawa, ON, Canada
- Department of Family and Community Medicine, University of Toronto, Toronto, ON, Canada
| | - Kieran L. Quinn
- Department of Medicine, University of Toronto, Toronto, ON, Canada
- ICES, Toronto and Ottawa, ON, Canada
- Temmy Latner Centre for Palliative Care, Toronto, ON, Canada
- Department of Medicine, Sinai Health System and University Health Network, Toronto, ON, Canada
- Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada
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17
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Boddaert MS, Fransen HP, de Nijs EJM, van Gerven D, Spierings LEA, Raijmakers NJH, van der Linden YM. Association between Inappropriate End-of-Life Cancer Care and Specialist Palliative Care: A Retrospective Observational Study in Two Acute Care Hospitals. Cancers (Basel) 2024; 16:721. [PMID: 38398112 PMCID: PMC10886868 DOI: 10.3390/cancers16040721] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 12/21/2023] [Revised: 01/30/2024] [Accepted: 02/05/2024] [Indexed: 02/25/2024] Open
Abstract
A substantial number of patients with life-threatening illnesses like cancer receive inappropriate end-of-life care. Improving their quality of end-of-life care is a priority for patients and their families and for public health. To investigate the association between provision, timing, and initial setting of hospital-based specialist palliative care and potentially inappropriate end-of-life care for patients with cancer in two acute care hospitals in the Netherlands, we conducted a retrospective observational study using hospital administrative databases. All adults diagnosed with or treated for cancer in the year preceding their death in 2018 or 2019 were included. The main exposure was hospital-based specialist palliative care initiated >30 days before death. The outcome measures in the last 30 days of life were six quality indicators for inappropriate end-of-life care (≥2 ED-visits, ≥2 hospital admissions, >14 days hospitalization, ICU-admission, chemotherapy, hospital death). We identified 2603 deceased patients, of whom 14% (n = 359) received specialist palliative care >30 days before death (exposure group). Overall, 27% (n = 690) received potentially inappropriate end-of-life care: 19% in the exposure group, versus 28% in the non-exposure group (p < 0.001). The exposure group was 45% less likely to receive potentially inappropriate end-of-life care (AOR 0.55; 95% CI 0.41 to 0.73). Early (>90 days) and late (≤90 and >30 days) initiation of specialist palliative care, as well as outpatient and inpatient initiation, were all associated with less potentially inappropriate end-of-life care (AOR 0.49; 0.62; 0.32; 0.64, respectively). Thus, timely access to hospital-based specialist palliative care is associated with less potentially inappropriate end-of-life care for patients with cancer. The outpatient initiation of specialist palliative care seems to enhance this result.
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Affiliation(s)
- Manon S. Boddaert
- Netherlands Comprehensive Cancer Organisation (IKNL), 3501 DB Utrecht, The Netherlands
- Center of Expertise in Palliative Care, Leiden University Medical Center, 2333 ZA Leiden, The Netherlands
- Netherlands Association for Palliative Care (PZNL), 3501 DB Utrecht, The Netherlands
| | - Heidi P. Fransen
- Netherlands Comprehensive Cancer Organisation (IKNL), 3501 DB Utrecht, The Netherlands
- Netherlands Association for Palliative Care (PZNL), 3501 DB Utrecht, The Netherlands
| | - Ellen J. M. de Nijs
- Center of Expertise in Palliative Care, Leiden University Medical Center, 2333 ZA Leiden, The Netherlands
| | - Dagmar van Gerven
- Department of Medical Oncology, Alrijne Hospital, 2353 GA Leiderdorp, The Netherlands
| | | | - Natasja J. H. Raijmakers
- Netherlands Comprehensive Cancer Organisation (IKNL), 3501 DB Utrecht, The Netherlands
- Netherlands Association for Palliative Care (PZNL), 3501 DB Utrecht, The Netherlands
| | - Yvette M. van der Linden
- Netherlands Comprehensive Cancer Organisation (IKNL), 3501 DB Utrecht, The Netherlands
- Center of Expertise in Palliative Care, Leiden University Medical Center, 2333 ZA Leiden, The Netherlands
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18
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Kenny P, Liu D, Fiebig D, Hall J, Millican J, Aranda S, van Gool K, Haywood P. Specialist Palliative Care and Health Care Costs at the End of Life. PHARMACOECONOMICS - OPEN 2024; 8:31-47. [PMID: 37910343 PMCID: PMC10781921 DOI: 10.1007/s41669-023-00446-7] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Grants] [Track Full Text] [Subscribe] [Scholar Register] [Accepted: 10/04/2023] [Indexed: 11/03/2023]
Abstract
BACKGROUND/AIMS The use and costs of health care rise substantially in the months prior to death, and although the use of palliative care services may be expected to lead to less costly care, the evidence is mixed. We analysed the costs of care over the last year of life and the extent to which these are associated with the use and duration of specialist palliative care (SPC) for decedents who died from cancer or another life-limiting illness. METHODS The decedents were participants in a cohort study of older residents of the state of New South Wales, Australia. Using linked survey and administrative health data from 2007 to 2016, two cohorts were identified: n = 10,535 where the cause of death was cancer; and n = 11,179 where the cause of death was another life-limiting illness. Costs of various types were analysed with separate risk-adjusted linear regression models for the last 1, 3, 6, 9 and 12 months before death and for both cohorts. SPC was categorised according to time to death from first contact with the service as 1-7 days, 7-30 days, 30-180 days and more than 180 days. RESULTS SPC use was higher among the cancer cohort (30.0%) relative to the non-cancer cohort (4.8%). The mean costs over the final year of life were AU$55,037 (SD 45,059) for the cancer cohort and AU$35,318 (SD 41,948) for the non-cancer cohort. Earlier use of SPC was associated with higher costs over the last year of life but lower costs in the last 1 and 3 months for both cohorts. Initiating SPC use more than 180 days before death was associated with a mean difference relative to the no SPC group of AU$15,590 (95% CI 10,617 to 20,562) and AU$13,739 (95% CI 733 to 26,746) over the last year of life for those dying from cancer and another illness, respectively. The same differences over the last month of life were - AU$2810 (95% CI - 3945 to - 1676) and - AU$4345 (95% CI - 6625 to - 2066). Admitted hospital care was the major driver of costs, with longer SPC associated with lower rates of death in hospital for both cohorts. CONCLUSION Early initiation of SPC was associated with higher costs over the last year of life and lower costs over the last months of life. This was the case for both the cancer and non-cancer cohorts, and appeared to be largely attributed to reduced hospitalisation. Although further investigation is required, our results suggest that expanding the availability of SPC services to provide more equitable access could enable patients to spend more time at their usual place of residence, reduce pressure on inpatient services and facilitate death at home when that is preferred.
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Affiliation(s)
- Patricia Kenny
- Centre for Health Economics Research & Evaluation, University of Technology Sydney, Sydney, NSW, Australia.
| | - Dan Liu
- Centre for Health Economics Research & Evaluation, University of Technology Sydney, Sydney, NSW, Australia
| | - Denzil Fiebig
- School of Economics, University of New South Wales, Sydney, NSW, Australia
| | - Jane Hall
- Centre for Health Economics Research & Evaluation, University of Technology Sydney, Sydney, NSW, Australia
| | - Jared Millican
- Concord Centre for Palliative Care, Sydney Local Health District, Sydney, NSW, Australia
| | - Sanchia Aranda
- Department of Nursing, University of Melbourne, Melbourne, Victoria, Australia
- Faculty of Health, University of Technology Sydney, Sydney, NSW, Australia
| | - Kees van Gool
- Centre for Health Economics Research & Evaluation, University of Technology Sydney, Sydney, NSW, Australia
- Pricing and analytics, Independent Hospital and Aged Care Pricing Authority, Sydney, NSW, Australia
| | - Philip Haywood
- Centre for Health Economics Research & Evaluation, University of Technology Sydney, Sydney, NSW, Australia
- Health Division, OECD, Paris, France
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Eaton TL, Lincoln TE, Lewis A, Davis BC, Sevin CM, Valley TS, Donovan HS, Seaman J, Iwashyna TJ, Alexander S, Scheunemann LP. Palliative Care in Survivors of Critical Illness: A Qualitative Study of Post-Intensive Care Unit Program Clinicians. J Palliat Med 2023; 26:1644-1653. [PMID: 37831930 PMCID: PMC10771886 DOI: 10.1089/jpm.2023.0034] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 06/27/2023] [Indexed: 10/15/2023] Open
Abstract
Background: Survivors of critical illness experience high rates of serious health-related suffering. The delivery of palliative care may assist in decreasing this burden for survivors and their families. Objectives: To understand beliefs, attitudes, and experiences of post-intensive care unit (ICU) program clinicians regarding palliative care and explore barriers and facilitators to incorporating palliative care into critical illness survivorship care. Design: Qualitative inquiry using semistructured interviews and framework analysis. Results were mapped using the Consolidated Framework for Implementation Research. Setting/Subjects: We interviewed 29 international members (United States, United Kingdom, Canada) of the Critical and Acute Illness Recovery Organization post-ICU clinic collaborative. Results: All interprofessional clinicians described components of palliative care as essential to post-ICU clinic practice, including symptom management, patient/family support, facilitation of goal-concordant care, expectation management and anticipatory guidance, spiritual support, and discussion of future health care wishes and advance care planning. Facilitators promoting palliative care strategies were clinician level, including first-hand experience, perceived value, and a positive attitude regarding palliative care. Clinician-level barriers were reciprocals and included insufficient palliative care knowledge, lack of self-efficacy, and a perceived need to protect ICU survivors from interventions the clinician felt may adversely affect recovery or change the care trajectory. System-level barriers included time constraints, cost, and lack of specialty palliative care services. Conclusion: Palliative care may be an essential element of post-ICU clinic care. Implementation efforts focused on tailoring strategies to improve post-ICU program clinicians' palliative care knowledge and self-efficacy could be a key to enhanced care delivery for survivors of critical illness.
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Affiliation(s)
- Tammy L. Eaton
- National Clinician Scholars Program (NCSP), VA HSR&D Center for the Study of Healthcare Innovation, Implementation, and Policy, University of Michigan, Ann Arbor, Michigan, USA
- Department of Systems, Populations and Leadership, University of Michigan School of Nursing, Ann Arbor, Michigan, USA
- Department of Acute and Tertiary Care, and School of Nursing, University of Pittsburgh, Pittsburgh, Pennsylvania, USA
| | - Taylor E. Lincoln
- Department of Critical Care Medicine, and Gynecology, and Reproductive Sciences, School of Medicine, University of Pittsburgh, Pittsburgh, Pennsylvania, USA
- Department of Medicine, Division of General Internal Medicine, Section of Palliative Care and Medical Ethics, University of Pittsburgh, Pittsburgh, Pennsylvania, USA
| | - Anna Lewis
- Department of Health Policy and Management, School of Public Health, University of Pittsburgh, Pittsburgh, Pennsylvania, USA
- Department of Clinical Care Coordination and Discharge Planning, University of Pittsburgh Medical Center Mercy Hospital, Pittsburgh, Pennsylvania, USA
| | - Brian C. Davis
- Kline School of Law, Duquesne University, Pittsburgh, Pennsylvania, USA
| | - Carla M. Sevin
- Division of Allergy, Pulmonary, and Critical Care Medicine, Department of Medicine, Vanderbilt University Medical Center, Nashville, Tennessee, USA
| | - Thomas S. Valley
- Division of Pulmonary and Critical Care Medicine, Department of Internal Medicine, University of Michigan, Ann Arbor, Michigan, USA
- Institute for Healthcare Policy and Innovation, University of Michigan, Ann Arbor, Michigan, USA
- VA Center for Clinical Management Research, Ann Arbor, Michigan, USA
- Center for Bioethics and Social Sciences in Medicine, University of Michigan, Ann Arbor, Michigan, USA
| | - Heidi S. Donovan
- Department of Health and Community Systems, School of Nursing, University of Pittsburgh, Pittsburgh, Pennsylvania, USA
- Department of Obstetrics, Gynecology, and Reproductive Sciences, School of Medicine, University of Pittsburgh, Pittsburgh, Pennsylvania, USA
| | - Jennifer Seaman
- Department of Acute and Tertiary Care, and School of Nursing, University of Pittsburgh, Pittsburgh, Pennsylvania, USA
| | - Theodore J. Iwashyna
- Department of Medicine, Division of Pulmonary and Critical Care, School of Public Health, Baltimore, Maryland, USA
- Department of Health Policy and Management, Johns Hopkins University, Baltimore, Maryland, USA
| | - Sheila Alexander
- Department of Acute and Tertiary Care, and School of Nursing, University of Pittsburgh, Pittsburgh, Pennsylvania, USA
- Department of Critical Care Medicine, and Gynecology, and Reproductive Sciences, School of Medicine, University of Pittsburgh, Pittsburgh, Pennsylvania, USA
| | - Leslie P. Scheunemann
- Division of Geriatric Medicine and Gerontology, Department of Medicine, University of Pittsburgh, Pittsburgh, Pennsylvania, USA
- Division of Pulmonary, Allergy, and Critical Care Medicine, Department of Medicine, University of Pittsburgh, Pittsburgh, Pennsylvania, USA
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20
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Grossoehme DH, Bish BM, Lou R, Khandelwal A, Brown M, Brown C, Teo E, Friebert S. Integrating Palliative Care into Burn Care: A Retrospective Application of Criteria for Appropriate Referral. J Burn Care Res 2023; 44:1365-1370. [PMID: 36638124 DOI: 10.1093/jbcr/irad005] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/02/2022] [Indexed: 01/14/2023]
Abstract
Burn injuries often require complex interdisciplinary care. Despite potential benefits, consultation with specialist palliative care typically occurs in 2% of burn admissions, due largely to lack of availability and misconceptions concerning palliative care. Criteria to guide consultation with specialist palliative care have been developed at this institution. The purpose of this study was to quantify the sensitivity and specificity of these criteria, and then optimize them. Retrospective examination of 388 admissions over 15 months at this adult and pediatric Burn Center were conducted. Chi-square or Fisher's exact test for categorical variables and Wilcoxon Rank Sum test for continuous variables were used to test for between-group differences in demographic and clinical characteristics. Logistic regression model was built to determine modified Baux cut-off score using Youden index (J) value. Criteria were sensitive (0.96) and specific (0.90), though with a low positive predictive value (0.43). Persons with lengths of stay greater than one week, advanced directives, Allow Natural Death orders, and/or deterioration events were significantly more likely to have had palliative care consulted. There were significant between-group differences (with/without palliative care consultation) based on burn surface area, modified Baux score, and mortality risk. Potential criteria revisions are proposed. Prospective adherence to revised criteria could provide useful guidance to providers and benefit to patients and families.
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Affiliation(s)
- Daniel H Grossoehme
- Haslinger Family Pediatric Palliative Care Center, Akron Children's Hospital, 215 West Bowery St, Akron, Ohio, USA
| | - Brianna M Bish
- Haslinger Family Pediatric Palliative Care Center, Akron Children's Hospital, 215 West Bowery St, Akron, Ohio, USA
- Kent State University College of Arts and Sciences, 850 University Esplanade, Kent, Ohio , USA
| | - Richard Lou
- Regional Burn Center, Akron Children's Hospital, One Perkins Square, Akron, Ohio, USA
| | - Anjay Khandelwal
- Regional Burn Center, Akron Children's Hospital, One Perkins Square, Akron, Ohio, USA
| | - Miraides Brown
- Rebecca D. Considine Research Institute, Akron Children's Hospital, One Perkins Square, Akron, Ohio, USA
| | - Carrie Brown
- Department of Pediatrics, University of Arkansas for Medical Sciences, 1 Children's Way, Little Rock, Arkansas, USA
| | - Esther Teo
- Department of Surgery, University of Arkansas for Medical Sciences, 1 Children's Way, Little Rock, Arkansas, USA
| | - Sarah Friebert
- Haslinger Family Pediatric Palliative Care Center, 215 West Bowery St, Akron Children's Hospital, Akron, Ohio, USA
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21
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Gitau K, Huang A, Isenberg SR, Stall N, Ailon J, Bell CM, Quinn KL. Association of patient sex with use of palliative care in Ontario, Canada: a population-based study. CMAJ Open 2023; 11:E1025-E1032. [PMID: 37935486 PMCID: PMC10635704 DOI: 10.9778/cmajo.20220232] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 11/09/2023] Open
Abstract
BACKGROUND It is unclear whether there are sex-based differences in use of palliative care near the end of life. The objective of this study was to measure the association between sex and palliative care use. METHODS We performed a population-based retrospective cohort study of all patients aged 18 years or older in the last year of life who died in Ontario, Canada, between 2010 and 2018. The primary exposure was patient biologic sex (male or female). The primary outcome was receipt of physician-delivered palliative care; secondary outcomes were approach to in-hospital palliative care and sex concordance of the patient and referring physician. We used multivariable modified Poisson regression to measure the association between patient sex and palliative care receipt, as well as patient-physician sex concordance. RESULTS There were 706 722 patients (354 657 females [50.2%], median age 80 yr [interquartile range 69-87 yr]) in the study cohort, 377 498 (53.4%) of whom received physician-delivered palliative care. After adjustment for age and selected comorbidities, female sex was associated with a 9% relative increase (adjusted relative risk [RR] 1.09, 95% CI 1.08-1.10) in receipt of physician-delivered palliative care. Female patients were 16% more likely than male patients (adjusted RR 1.14, 95% CI 1.14-1.18) to have had their first hospital admission in their final year of life categorized as having a likely palliative intent. Female patients were 18% more likely than male patients (RR 1.18, 95% CI 1.17-1.19) to have had a female referring physician, and male patients were 20% more likely than female patients (adjusted RR 1.20, CI 1.19-1.21) to have had a male referring physician. INTERPRETATION After adjustment for age and comorbidities, male patients were slightly less likely than female patients to have received physician-delivered palliative care, and female patients were more likely than male patients to have had their first hospital admission in their final year of life categorized as having a likely palliative care intent. These results may reflect a between-sex difference in overall end-of-life care preferences or sex differences in decision-making influenced by patient-specific factors; further studies exploring how these factors affect end-of-life decision-making are required.
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Affiliation(s)
- Kevin Gitau
- Departments of Medicine (Gitau, Stall, Ailon, Bell, Quinn) and Family and Community Medicine (Isenberg), University of Toronto; ICES (Huang, Stall, Bell, Quinn); Department of Medicine (Stall, Bell, Quinn), Sinai Health System; Temmy Latner Centre for Palliative Care (Quinn), Sinai Health System, Toronto, Ont.; Department of Medicine (Isenberg), University of Ottawa; Bruyère Research Institute (Isenberg, Ailon), Ottawa, Ont.; Department of Medicine, St. Michael's Hospital, Unity Health Toronto, Toronto, Ont
| | - Anjie Huang
- Departments of Medicine (Gitau, Stall, Ailon, Bell, Quinn) and Family and Community Medicine (Isenberg), University of Toronto; ICES (Huang, Stall, Bell, Quinn); Department of Medicine (Stall, Bell, Quinn), Sinai Health System; Temmy Latner Centre for Palliative Care (Quinn), Sinai Health System, Toronto, Ont.; Department of Medicine (Isenberg), University of Ottawa; Bruyère Research Institute (Isenberg, Ailon), Ottawa, Ont.; Department of Medicine, St. Michael's Hospital, Unity Health Toronto, Toronto, Ont
| | - Sarina R Isenberg
- Departments of Medicine (Gitau, Stall, Ailon, Bell, Quinn) and Family and Community Medicine (Isenberg), University of Toronto; ICES (Huang, Stall, Bell, Quinn); Department of Medicine (Stall, Bell, Quinn), Sinai Health System; Temmy Latner Centre for Palliative Care (Quinn), Sinai Health System, Toronto, Ont.; Department of Medicine (Isenberg), University of Ottawa; Bruyère Research Institute (Isenberg, Ailon), Ottawa, Ont.; Department of Medicine, St. Michael's Hospital, Unity Health Toronto, Toronto, Ont
| | - Nathan Stall
- Departments of Medicine (Gitau, Stall, Ailon, Bell, Quinn) and Family and Community Medicine (Isenberg), University of Toronto; ICES (Huang, Stall, Bell, Quinn); Department of Medicine (Stall, Bell, Quinn), Sinai Health System; Temmy Latner Centre for Palliative Care (Quinn), Sinai Health System, Toronto, Ont.; Department of Medicine (Isenberg), University of Ottawa; Bruyère Research Institute (Isenberg, Ailon), Ottawa, Ont.; Department of Medicine, St. Michael's Hospital, Unity Health Toronto, Toronto, Ont
| | - Jonathan Ailon
- Departments of Medicine (Gitau, Stall, Ailon, Bell, Quinn) and Family and Community Medicine (Isenberg), University of Toronto; ICES (Huang, Stall, Bell, Quinn); Department of Medicine (Stall, Bell, Quinn), Sinai Health System; Temmy Latner Centre for Palliative Care (Quinn), Sinai Health System, Toronto, Ont.; Department of Medicine (Isenberg), University of Ottawa; Bruyère Research Institute (Isenberg, Ailon), Ottawa, Ont.; Department of Medicine, St. Michael's Hospital, Unity Health Toronto, Toronto, Ont
| | - Chaim M Bell
- Departments of Medicine (Gitau, Stall, Ailon, Bell, Quinn) and Family and Community Medicine (Isenberg), University of Toronto; ICES (Huang, Stall, Bell, Quinn); Department of Medicine (Stall, Bell, Quinn), Sinai Health System; Temmy Latner Centre for Palliative Care (Quinn), Sinai Health System, Toronto, Ont.; Department of Medicine (Isenberg), University of Ottawa; Bruyère Research Institute (Isenberg, Ailon), Ottawa, Ont.; Department of Medicine, St. Michael's Hospital, Unity Health Toronto, Toronto, Ont
| | - Kieran L Quinn
- Departments of Medicine (Gitau, Stall, Ailon, Bell, Quinn) and Family and Community Medicine (Isenberg), University of Toronto; ICES (Huang, Stall, Bell, Quinn); Department of Medicine (Stall, Bell, Quinn), Sinai Health System; Temmy Latner Centre for Palliative Care (Quinn), Sinai Health System, Toronto, Ont.; Department of Medicine (Isenberg), University of Ottawa; Bruyère Research Institute (Isenberg, Ailon), Ottawa, Ont.; Department of Medicine, St. Michael's Hospital, Unity Health Toronto, Toronto, Ont.
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22
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Vestergaard AHS, Ehlers LH, Neergaard MA, Christiansen CF, Valentin JB, Johnsen SP. Healthcare Costs at the End of Life for Patients with Non-cancer Diseases and Cancer in Denmark. PHARMACOECONOMICS - OPEN 2023; 7:751-764. [PMID: 37552432 PMCID: PMC10471564 DOI: 10.1007/s41669-023-00430-1] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Grants] [Track Full Text] [Subscribe] [Scholar Register] [Accepted: 07/06/2023] [Indexed: 08/09/2023]
Abstract
OBJECTIVES To examine costs of care from a healthcare sector perspective within 1 year before death in patients with non-cancer diseases and patients with cancer. METHODS This nationwide registry-based study identified all Danish citizens dying from major non-cancer diseases or cancer in 2010-2016. Applying the cost-of-illness method, we included costs of somatic hospitals, including hospital-based specialist palliative care, primary care, prescription medicine and hospice expressed in 2022 euros. Costs of patients with non-cancer diseases and cancer were compared using regression analyses adjusting for sex, age, comorbidity, residential region, marital/cohabitation status and income level. RESULTS Within 1 year before death, mean total healthcare costs were €27,185 [95% confidence interval (CI) €26,970-27,401] per patient with non-cancer disease (n = 109,723) and €51,348 (95% CI €51,098-51,597) per patient with cancer (n = 108,889). The adjusted relative total healthcare costs, i.e. the ratio of the mean costs, of patients with non-cancer diseases was 0.64 (95% CI 0.63-0.66) at 12 months before death and 0.91 (95% CI 0.90-0.92) within 30 days before death compared with patients with cancer. Mean costs of hospital-based specialist palliative care and hospice in the year leading up to death were €17 (95% CI €13-20) and €90 (95% CI €77-102) per patient with non-cancer disease but €1552 (95% CI €1506-1598) and €3411 (95% CI €3342-3480) per patient with cancer. CONCLUSIONS Within 1 year before death, total healthcare costs, mainly driven by hospital costs, were substantially lower for patients with non-cancer diseases compared with patients with cancer. Moreover, the costs of hospital-based specialist palliative care and hospice were minimal for patients with non-cancer diseases.
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Affiliation(s)
- Anne Høy Seemann Vestergaard
- Department of Clinical Epidemiology, Department of Clinical Medicine, Aarhus University and Aarhus University Hospital, Aarhus N, Denmark.
| | - Lars Holger Ehlers
- Danish Center for Healthcare Improvements, Department of Clinical Medicine, Aalborg University and Aalborg University Hospital, Aalborg Ø, Denmark
- Nordic Institute of Health Economics, Aarhus, Denmark
| | - Mette Asbjoern Neergaard
- Palliative Care Unit, Department of Oncology, Department of Clinical Medicine, Aarhus University and Aarhus University Hospital, Aarhus N, Denmark
| | - Christian Fynbo Christiansen
- Department of Clinical Epidemiology, Department of Clinical Medicine, Aarhus University and Aarhus University Hospital, Aarhus N, Denmark
| | - Jan Brink Valentin
- Danish Center for Clinical Health Services Research, Department of Clinical Medicine, Aalborg University and Aalborg University Hospital, Aalborg Ø, Denmark
| | - Søren Paaske Johnsen
- Danish Center for Healthcare Improvements, Department of Clinical Medicine, Aalborg University and Aalborg University Hospital, Aalborg Ø, Denmark
- Danish Center for Clinical Health Services Research, Department of Clinical Medicine, Aalborg University and Aalborg University Hospital, Aalborg Ø, Denmark
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23
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Alhalabi MN, Khalaf IA, Zeilani RS, Bawadi HA, Musa AS, Nashwan AJ. Palliative care needs of Jordanian women's experience of living with stroke: a descriptive phenomenological study. BMC Palliat Care 2023; 22:106. [PMID: 37507696 PMCID: PMC10375733 DOI: 10.1186/s12904-023-01216-2] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 02/13/2023] [Accepted: 06/27/2023] [Indexed: 07/30/2023] Open
Abstract
BACKGROUND Stroke is a prevalent neurological disease that can have a profound impact on women's physical, psychosocial, and spiritual well-being. In many cases, women living with stroke may have marginalized palliative care needs that are often not adequately addressed by healthcare providers. Unfortunately, the experience of women with stroke and their specific palliative care needs have been largely overlooked in research conducted in Jordan. AIM The purpose of this study is to examine the specific palliative care needs of women who have experienced a stroke and are currently living in Jordan. By conducting this research, we aim to identify the various physical, emotional, social, and spiritual needs of women with stroke and gain a better understanding of how these needs can be addressed through palliative care interventions. METHODS This research utilized a phenomenological descriptive study approach to explore the experiences of twelve women recruited from the outpatient clinic of rehabilitation centers. The data was collected through semi-structured interviews. The analysis was conducted using the method of Colaizzi (1978), which involves identifying significant statements, extracting meanings, and formulating an exhaustive description of the phenomenon under study. RESULTS The study findings uncovered three primary themes that reflect the palliative care needs of women who are currently living with stroke in Jordan, including (1) Spiritual practices, beliefs, and needs; (2) Coping with distressing symptoms; and (3) Managing the delivery of unfavorable news. DISCUSSION This study provides valuable insights into the experiences of Jordanian women living with stroke, highlighting the far-reaching consequences of this condition on various aspects of their lives. The findings reveal that stroke has a significant impact on women's physical, emotional, social, and spiritual well-being, with many facing unmet palliative care needs. By illuminating these challenges, our study underscores the importance of taking a holistic approach to stroke care that addresses the multifaceted needs of women living with stroke. Healthcare providers must consider these findings and integrate palliative care interventions into treatment plans to improve the quality of life of women living with stroke in Jordan. CONCLUSION This study provides valuable insights into the palliative care needs of women who have experienced a stroke. Our findings highlight the importance of addressing women's physical, psychosocial, and spiritual needs as part of a comprehensive approach to stroke care. We recommend integrating palliative care interventions into rehabilitation programs to improve the quality of life of women living with stroke in Jordan. By doing so, we can address the pain and complications that can arise from stroke, while also providing holistic support to address the emotional and spiritual impact of the illness. This approach has the potential to improve outcomes for women living with stroke and enhance their overall well-being.
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Affiliation(s)
- Marwa Nayef Alhalabi
- Department of Adult Health Nursing, Faculty of Nursing, The University of Jordan, Amman, Jordan
| | - Inaam Abdulla Khalaf
- Department of Maternal and Child Health Nursing, Faculty of Nursing, The University of Jordan, Amman, Jordan
| | - Ruqayya Sayed Zeilani
- Department of Adult Health Nursing, Faculty of Nursing, The University of Jordan, Amman, Jordan
| | - Hala Ahmad Bawadi
- Department of Maternal and Child Health Nursing, Faculty of Nursing, The University of Jordan, Amman, Jordan
| | - Ahmad S. Musa
- Department of Adult Health Nursing, Faculty of Nursing, Al Al-Bayt University, Mafraq, Jordan
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Bourmorck D, de Saint-Hubert M, Desmedt M, Piers R, Flament J, De Brauwer I. SPICT as a predictive tool for risk of 1-year health degradation and death in older patients admitted to the emergency department: a bicentric cohort study in Belgium. BMC Palliat Care 2023; 22:79. [PMID: 37355577 DOI: 10.1186/s12904-023-01201-9] [Citation(s) in RCA: 9] [Impact Index Per Article: 4.5] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 07/05/2022] [Accepted: 06/20/2023] [Indexed: 06/26/2023] Open
Abstract
BACKGROUND Older patients are increasingly showing multi-comorbidities, including advanced chronic diseases. When admitted to the emergency department (ED), the decision to pursue life-prolonging treatments or to initiate a palliative care approach is a challenge for clinicians. We test for the first time the diagnostic accuracy of the Supportive and Palliative Care Indicators Tool (SPICT) in the ED to identify older patients at risk of deteriorating and dying, and timely address palliative care needs. METHODS We conducted a prospective bicentric cohort study on 352 older patients (≥ 75 years) admitted to two EDs in Belgium between December 2019 and March 2020 and between August and November 2020. SPICT (French version, 2019) variables were collected during the patients' admission to the ED, along with socio-demographic, medical and functional data. The palliative profile was defined as a positive SPICT assessment. Survival, symptoms and health degradation (≥ 1 point in ADL Katz score or institutionalisation and death) were followed at 12 months by phone. Main accuracy measures were sensitivity, specificity and likelihood ratios (LR) as well as cox regression, survival analysis using the Kaplan Meier method, and ordinal regression. RESULTS Out of 352 patients included in the study (mean age 83 ± 5.5 years, 43% male), 167 patients (47%) had a positive SPICT profile. At one year follow up, SPICT positive patients presented significantly more health degradation (72%) compared with SPICT negative patients (35%, p < 0.001). SPICT positivity was correlated with 1-year health degradation (OR 4.9; p < 0.001). The sensitivity and specificity of SPICT to predict health degradation were 0.65 (95%CI, 0.57-0.73) and 0.72 (95%CI, 0.64-0.80) respectively, with a negative LR of 0.48 (95%CI, 0.38-0.60) and a positive LR of 2.37 (1.78-3.16). The survival time was shorter in SPICT positive patients than in SPICT negative ones (p < 0.001), the former having a higher 1-year mortality rate (HR = 4.21; p < 0.001). CONCLUSIONS SPICT successfully identifies older patients at high risk of health degradation and death. It can support emergency clinicians to identify older patients with a palliative profile and subsequently initiate a palliative care approach with a discussion on goals of care.
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Affiliation(s)
- Delphine Bourmorck
- Institut de Recherche Santé et Société, Université catholique de Louvain (UCLouvain), Clos Chapelle-aux-Champs, 30, Bruxelles, 1200, Belgium.
| | - Marie de Saint-Hubert
- Institut de Recherche Santé et Société, Université catholique de Louvain (UCLouvain), Clos Chapelle-aux-Champs, 30, Bruxelles, 1200, Belgium
- Centre Hospitalier Universitaire - UCL - Namur, Avenue Gaston Thérasse 1, Yvoir, 5530, Belgium
| | - Marianne Desmedt
- Cliniques universitaires Saint-Luc, Avenue Hippocrate 10, Bruxelles, 1200, Belgium
| | - Ruth Piers
- Department of Geriatrics, Ghent University Hospital, C. Heymanslaan 10, Ghent, Gent, 9000, Belgium
| | - Julien Flament
- Centre Hospitalier Universitaire - UCL - Namur, Avenue Gaston Thérasse 1, Yvoir, 5530, Belgium
| | - Isabelle De Brauwer
- Institut de Recherche Santé et Société, Université catholique de Louvain (UCLouvain), Clos Chapelle-aux-Champs, 30, Bruxelles, 1200, Belgium
- Cliniques universitaires Saint-Luc, Avenue Hippocrate 10, Bruxelles, 1200, Belgium
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25
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Treatment of painful calciphylaxis with methadone in a palliative care unit: A case report. Clin Nephrol Case Stud 2023; 11:6-11. [PMID: 36688187 PMCID: PMC9850246 DOI: 10.5414/cncs110985] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 08/01/2022] [Accepted: 11/30/2022] [Indexed: 01/15/2023] Open
Abstract
A 72-year-old female was admitted with severe calciphylaxis-associated bilateral leg pain on a background of end-stage renal failure on hemodialysis. Palliative care input was requested, and following transfer to our unit she was commenced on low-dose methadone as adjunctive analgesic therapy. A remarkable and sustained analgesic response was observed. Calciphylaxis is associated with severe pain, and careful consideration of analgesic agents and their pharmacokinetics in patients with end-stage renal failure is required.
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26
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Ito F, Togashi S, Sato Y, Masukawa K, Sato K, Nakayama M, Fujimori K, Miyashita M. Validation study on definition of cause of death in Japanese claims data. PLoS One 2023; 18:e0283209. [PMID: 36952484 PMCID: PMC10035912 DOI: 10.1371/journal.pone.0283209] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/11/2022] [Accepted: 03/05/2023] [Indexed: 03/25/2023] Open
Abstract
Identifying the cause of death is important for the study of end-of-life patients using claims data in Japan. However, the validity of how cause of death is identified using claims data remains unknown. Therefore, this study aimed to verify the validity of the method used to identify the cause of death based on Japanese claims data. Our study population included patients who died at two institutions between January 1, 2018 and December 31, 2019. Claims data consisted of medical data and Diagnosis Procedure Combination (DPC) data, and five definitions developed from disease classification in each dataset were compared with death certificates. Nine causes of death, including cancer, were included in the study. The definition with the highest positive predictive values (PPVs) and sensitivities in this study was the combination of "main disease" in both medical and DPC data. For cancer, these definitions had PPVs and sensitivities of > 90%. For heart disease, these definitions had PPVs of > 50% and sensitivities of > 70%. For cerebrovascular disease, these definitions had PPVs of > 80% and sensitivities of> 70%. For other causes of death, PPVs and sensitivities were < 50% for most definitions. Based on these results, we recommend definitions with a combination of "main disease" in both medical and DPC data for cancer and cerebrovascular disease. However, a clear argument cannot be made for other causes of death because of the small sample size. Therefore, the results of this study can be used with confidence for cancer and cerebrovascular disease but should be used with caution for other causes of death.
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Affiliation(s)
- Fumiya Ito
- Department of Palliative Nursing, Health Sciences, Tohoku University Graduate School of Medicine, Sendai, Japan
| | - Shintaro Togashi
- Department of Palliative Nursing, Health Sciences, Tohoku University Graduate School of Medicine, Sendai, Japan
| | - Yuri Sato
- Department of Palliative Nursing, Health Sciences, Tohoku University Graduate School of Medicine, Sendai, Japan
| | - Kento Masukawa
- Department of Palliative Nursing, Health Sciences, Tohoku University Graduate School of Medicine, Sendai, Japan
| | - Kazuki Sato
- Division of Integrated Health Sciences, Department of Nursing for Advanced Practice, Nagoya University Graduate School of Medicine, Nagoya, Japan
| | - Masaharu Nakayama
- Department of Medical Informatics, Tohoku University Graduate School of Medicine, Sendai, Japan
- Center for the Promotion of Clinical Research, Tohoku University Hospital, Sendai, Japan
| | - Kenji Fujimori
- Department of Healthcare Administration, Tohoku University Graduate School of Medicine, Sendai, Japan
| | - Mitsunori Miyashita
- Department of Palliative Nursing, Health Sciences, Tohoku University Graduate School of Medicine, Sendai, Japan
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Khan R, Salim M, Tanuseputro P, Hsu AT, Coburn N, Hallet J, Talarico R, James PD. Initial treatment is associated with improved survival and end-of-life outcomes for patients with pancreatic cancer: a cohort study. BMC Cancer 2022; 22:1312. [DOI: 10.1186/s12885-022-10342-8] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 08/10/2022] [Accepted: 11/21/2022] [Indexed: 12/15/2022] Open
Abstract
Abstract
Background
We describe the association between initial treatment and end-of-life (EOL) outcomes among patients with pancreatic ductal adenocarcinoma (PDAC).
Methods
This population-based cohort study included patients with PDAC who died from April 2010–December 2017 in Ontario, Canada using administrative databases. We used multivariable models to explore the association between index cancer treatment (no cancer-directed therapy, radiation, chemotherapy, surgery alone, and surgery and chemotherapy), and primary (mortality, healthcare encounters and palliative care) and secondary outcomes (location of death, hospitalizations, and receipt of chemotherapy within the last 30 days of life).
Results
In our cohort (N = 9950), 56% received no cancer-directed therapy, 5% underwent radiation, 27% underwent chemotherapy, 7% underwent surgery alone, and 6% underwent surgery and chemotherapy. Compared to no cancer-directed therapy, radiation therapy (HR = 0.63), chemotherapy (HR = 0.43) surgery alone (HR = 0.32), and surgery and chemotherapy (HR = 0.23) were all associated with decreased mortality. Radiation (AMD = − 3.64), chemotherapy (AMD = -6.35), surgery alone (AMD = -6.91), and surgery and chemotherapy (AMD = -6.74) were all associated with fewer healthcare encounters per 30 days in the last 6 months of life. Chemotherapy (AMD = -1.57), surgery alone (AMD = -1.65), and surgery and chemotherapy (AMD = -1.67) were associated with fewer palliative care visits (all p-values for estimates above < 0.05). Treatment groups were associated with lower odds of institutional death and hospitalization at EOL, and higher odds of chemotherapy at EOL.
Conclusions
Receiving cancer-directed therapies was associated with higher survival, fewer healthcare visits, lower odds of dying in an institution and hospitalization at EOL, fewer palliative care visits, and higher odds of receiving chemotherapy at EOL.
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Campos E, Isenberg SR, Lovblom LE, Mak S, Steinberg L, Bush SH, Goldman R, Graham C, Kavalieratos D, Stukel T, Tanuseputro P, Quinn KL. Supporting the Heterogeneous and Evolving Treatment Preferences of Patients With Heart Failure Through Collaborative Home-Based Palliative Care. J Am Heart Assoc 2022; 11:e026319. [PMID: 36172958 PMCID: PMC9673704 DOI: 10.1161/jaha.122.026319] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 07/14/2022] [Accepted: 09/08/2022] [Indexed: 11/16/2022]
Abstract
Background We characterized the treatment preferences, care setting, and end-of-life outcomes among patients with advanced heart failure supported by a collaborative home-based model of palliative care. Methods and results This decedent cohort study included 250 patients with advanced heart failure who received collaborative home-based palliative care for a median duration of 1.9 months of follow-up in Ontario, Canada, from April 2013 to July 2019. Patients were categorized into 1 of 4 groups according to their initial treatment preferences. Outcomes included location of death (out of hospital versus in hospital), changes in treatment preferences, and health service use. Among patients who initially prioritized quantity of life, 21 of 43 (48.8%) changed their treatment preferences during follow-up (mean 0.28 changes per month). The majority of these patients changed their preferences to avoid hospitalization and focus on comfort at home (19 of 24 changes, 79%). A total of 207 of 250 (82.8%) patients experienced an out-of-hospital death. Patients who initially prioritized quantity of life had decreased odds of out-of-hospital death (versus in-hospital death; adjusted odds ratio, 0.259 [95% CI, 0.097-0.693]) and more frequent hospitalizations (mean 0.45 hospitalizations per person-month) compared with patients who initially prioritized quality of life at home. Conclusions Our results yield a more detailed understanding of the interaction of advanced care planning and patient preferences. Shared decision making for personalized treatment is dynamic and can be enacted earlier than at the very end of life.
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Affiliation(s)
- Erin Campos
- Department of MedicineUniversity of TorontoTorontoOntario
| | - Sarina R. Isenberg
- Bruyère Research InstituteOttawaOntario
- Department of MedicineUniversity of OttawaOttawaOntario
- Department of Family and Community MedicineUniversity of TorontoTorontoOntario
| | | | - Susanna Mak
- Department of MedicineUniversity of TorontoTorontoOntario
- Department of MedicineSinai Health SystemTorontoOntario
- Division of CardiologySinai Health SystemTorontoOntario
| | - Leah Steinberg
- Department of Family and Community MedicineUniversity of TorontoTorontoOntario
- Department of MedicineSinai Health SystemTorontoOntario
- Interdepartmental Division of Palliative CareSinai Health SystemTorontoOntario
| | - Shirley H. Bush
- Bruyère Research InstituteOttawaOntario
- Department of MedicineUniversity of OttawaOttawaOntario
- Ottawa Hospital Research InstituteUniversity of OttawaOttawaOntario
| | - Russell Goldman
- Interdepartmental Division of Palliative CareSinai Health SystemTorontoOntario
- Temmy Latner Centre for Palliative CareTorontoOntario
| | | | - Dio Kavalieratos
- Division of Palliative MedicineEmory University School of MedicineAtlantaGeorgia
| | | | - Peter Tanuseputro
- Bruyère Research InstituteOttawaOntario
- Department of MedicineUniversity of OttawaOttawaOntario
- Ottawa Hospital Research InstituteUniversity of OttawaOttawaOntario
- ICESTorontoOntario
- ICESOttawaOntario
| | - Kieran L. Quinn
- Department of MedicineUniversity of TorontoTorontoOntario
- Department of MedicineSinai Health SystemTorontoOntario
- Interdepartmental Division of Palliative CareSinai Health SystemTorontoOntario
- Temmy Latner Centre for Palliative CareTorontoOntario
- ICESTorontoOntario
- ICESOttawaOntario
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Palliative Care for Patients with End-Stage, Non-Oncologic Diseases-A Retrospective Study in Three Public Palliative Care Departments in Northern Italy. Healthcare (Basel) 2022; 10:healthcare10061031. [PMID: 35742082 PMCID: PMC9222892 DOI: 10.3390/healthcare10061031] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.7] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 04/03/2022] [Revised: 05/24/2022] [Accepted: 05/29/2022] [Indexed: 02/05/2023] Open
Abstract
Patients with irreversible malignant and non-malignant diseases have comparable mortality rates, symptom burdens, and quality of life issues; however, non-cancer patients seldom receive palliative care (PC) or receive it late in their disease trajectory. To explore the characteristics of non-cancer patients receiving PC in northern Italy, as well as the features and outcomes of their care, we retrospectively analyzed the charts of all non-cancer patients initiating PC regimens during 2019 in three publicly funded PC departments in Italy’s populous Lombardy region. We recorded the baseline variables (including data collected with the NECPAL CCOMS-ICO-derived questionnaire used since 2018 to evaluate all admissions to the region’s PC network), as well as treatment features (setting and duration) and outcomes (including time and setting of death). Of the 2043 patients admitted in 2019, only 12% (243 patients—131 females; mean age 83.5 years) had non-oncological primary diagnoses (mainly dementia [n = 78], heart disease [n = 55], and lung disease [n = 30]). All 243 had Karnofsky performance statuses ≤ 40% (10−20% in 64%); most (82%) were malnourished, 92% had ≥2 comorbidities, and 61% reported 2−3 severe symptoms (pain, dyspnea, and fatigue). Fifteen withdrew or were discharged from the study PCN; the other 228 remained in the PCN and died in hospice (n = 133), at home (n = 9), or after family-requested transfer to an emergency department (n = 1). Most deaths (172/228, 75%) occurred <3 weeks after PC initiation. These findings indicate that the PCN network we studied cares for few patients with life-limiting non-malignant diseases. Those admitted have advanced-stage illness, heavy symptom burdens, low performance statuses, and poor survival. Additional efforts are needed to improve PCN accessibility for non-cancer patients.
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Kangtanyagan C, Vatcharavongvan P. No Terminally Ill Patients with Non-cancer Received Palliative Care Services During Hospital Admission: A Cross-Sectional Study. Am J Hosp Palliat Care 2022; 40:492-499. [PMID: 35614032 DOI: 10.1177/10499091221105466] [Citation(s) in RCA: 3] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/17/2022] Open
Abstract
BACKGROUND Terminally ill patients admitted to a hospital with noncancer conditions may miss palliative care (PC) service opportunities. This study aimed to examine the utilization of PC services among these hospitalized patients. METHODS We conducted a cross-sectional study using the electronic medical records of noncancer patients admitted to internal medicine wards, intensive care units (ICUs), and cardiac intensive care units (CICUs). The patients meeting the Supportive and Palliative Care Indicators Tool (SPICT) criteria needed PC, and the patients who had advanced care plans or received PC consultations received PC services. We reported the proportions of patients with PC needs and PC services and their associated factors with the crude and adjusted odds ratios. RESULTS Of 459 patients, 49.9% were female, and 92.6% were discharged alive. The mean age was 63 years old, and the average length of stay was 10 days. Additionally, 61.7% needed PC according to the SPICT criteria, but none of these patients received PC services. Patients with dementia/frailty, kidney disease, and heart disease had the highest rate of PC underutilization (100%, 96.8%, and 91.3%, respectively). Age, number of discharge medications, and length of stay were associated with needing PC, but some associations disappeared after the subgroup analysis. CONCLUSION None of the terminally ill noncancer patients in our study received PC services. The patients with dementia/frailty, kidney disease, and heart disease underutilized the services. A long length of stay and many discharge medications were associated with the PC needs and can be used to assess the PC needs.
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Affiliation(s)
| | - Pasitpon Vatcharavongvan
- Research Unit in Physical Anthropology and Health Sciences, 37699Thammasat University, Pathum-Thani, Thailand.,Department of Community Medicine and Family Medicine, Thammasat University, Pathum-Thani, Thailand
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Blanes-Selva V, Doñate-Martínez A, Linklater G, García-Gómez JM. Complementary frailty and mortality prediction models on older patients as a tool for assessing palliative care needs. Health Informatics J 2022; 28:14604582221092592. [PMID: 35642719 DOI: 10.1177/14604582221092592] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/15/2022]
Abstract
Palliative care (PC) has demonstrated benefits for life-limiting illnesses. Bad survival prognosis and patients' decline are working criteria to guide PC decision-making for older patients. Still, there is not a clear consensus on when to initiate early PC. This work aims to propose machine learning approaches to predict frailty and mortality in older patients in supporting PC decision-making. Predictive models based on Gradient Boosting Machines (GBM) and Deep Neural Networks (DNN) were implemented for binary 1-year mortality classification, survival estimation and 1-year frailty classification. Besides, we tested the similarity between mortality and frailty distributions. The 1-year mortality classifier achieved an Area Under the Curve Receiver Operating Characteristic (AUC ROC) of 0.87 [0.86, 0.87], whereas the mortality regression model achieved an mean absolute error (MAE) of 333.13 [323.10, 342.49] days. Moreover, the 1-year frailty classifier obtained an AUC ROC of 0.89 [0.88, 0.90]. Mortality and frailty criteria were weakly correlated and had different distributions, which can be interpreted as these assessment measurements are complementary for PC decision-making. This study provides new models that can be part of decision-making systems for PC services in older patients after their external validation.
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Affiliation(s)
- Vicent Blanes-Selva
- Biomedical Data Science Lab, Instituto Universitarios de Tecnologías de La Información y Comunicaciones (ITACA), Universitat Politècnica de València, Valencia, Spain
| | | | | | - Juan M García-Gómez
- Biomedical Data Science Lab, Instituto Universitarios de Tecnologías de La Información y Comunicaciones (ITACA), Universitat Politècnica de València, Valencia, Spain
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Wolfe A, Watt CL, Downar J, Bush SH. Use and Discontinuation of Milrinone for Advanced Heart Failure in an Academic Palliative Care Unit: A Case Report and Discussion of Recommendations. J Pain Palliat Care Pharmacother 2022; 36:24-33. [PMID: 35234559 DOI: 10.1080/15360288.2022.2027058] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 10/19/2022]
Abstract
The use of intravenous inotropic medications in advanced heart failure (HF) has been shown to improve symptoms and decrease hospitalizations, prompting support for their use as a palliative measure for symptom management. Recommendations regarding inotrope management and method of discontinuation at the end of life are not specifically detailed in the literature and current guidelines. This case report describes the use of milrinone in a patient with advanced HF during the terminal phase of illness in a non-monitored palliative care unit setting, including dose reduction and discontinuation of milrinone. Increased patient anxiety during the weaning process was managed with midazolam. The provision of individualized milrinone therapy in non-monitored palliative care settings is feasible and well-tolerated using the presented detailed recommendations for its use and administration, monitoring, dose reduction and discontinuation and proactive symptom management at the end of life. Further research is needed for the optimal management of terminally ill patients with advanced HF.Supplemental data for this article is available online at here. show.
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Mason B, Carduff E, Laidlaw S, Kendall M, Murray SA, Finucane A, Moine S, Kerssens J, Stoddart A, Tucker S, Haraldsdottir E, Ritchie SL, Fallon M, Keen J, Macpherson S, Moussa L, Boyd K. Integrating lived experiences of out-of-hours health services for people with palliative and end-of-life care needs with national datasets for people dying in Scotland in 2016: A mixed methods, multi-stage design. Palliat Med 2022; 36:478-488. [PMID: 35354412 PMCID: PMC8972951 DOI: 10.1177/02692163211066256] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 11/15/2022]
Abstract
BACKGROUND Unscheduled care is used increasingly during the last year of life by people known to have significant palliative care needs. AIM To document the frequency and patterns of use of unscheduled healthcare by people in their last year of life and understand the experiences and perspectives of patients, families and professionals about accessing unscheduled care out-of-hours. DESIGN A mixed methods, multi-stage study integrating a retrospective cohort analysis of unscheduled healthcare service use in the last year of life for all people dying in Scotland in 2016 with qualitative data from three regions involving service users, bereaved carers and general practitioners. SETTING Three contrasting Scottish Health Board regions and national datasets for the whole of Scotland. RESULTS People who died in Scotland in 2016 (n = 56,407) had 472,360 unscheduled contacts with one of five services: telephone advice, primary care, ambulance service, emergency department and emergency hospital admission. These formed 206,841 individual continuous unscheduled care pathways: 65% starting out-of-hours. When accessing healthcare out-of-hours, patients and carers prioritised safety and a timely response. Their choice of which service to contact was informed by perceptions and previous experiences of potential delays and whether the outcome might be hospital admission. Professionals found it difficult to practice palliative care in a crisis unless the patient had previously been identified. CONCLUSION Strengthening unscheduled care in the community, together with patient and public information about how to access these services could prevent hospital admissions of low benefit and enhance community support for people living with advanced illness.
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Affiliation(s)
- Bruce Mason
- Primary Palliative Care Research Group, Usher Institute, The University of Edinburgh, Edinburgh, UK
| | | | | | - Marilyn Kendall
- Primary Palliative Care Research Group, Usher Institute, The University of Edinburgh, Edinburgh, UK
| | - Scott A Murray
- Primary Palliative Care Research Group, Usher Institute, The University of Edinburgh, Edinburgh, UK
| | - Anne Finucane
- Primary Palliative Care Research Group, Usher Institute, The University of Edinburgh, Edinburgh, UK
- Clinical Psychology, School of Health in Social Science, The University of Edinburgh, Edinburgh, UK
| | - Sebastien Moine
- Primary Palliative Care Research Group, Usher Institute, The University of Edinburgh, Edinburgh, UK
| | - Joannes Kerssens
- Electronic Data Research & Innovation Service (eDRIS), Public Health Scotland, Edinburgh, UK
| | - Andrew Stoddart
- Edinburgh Clinical Trials Unit, The University of Edinburgh, Edinburgh, UK
| | | | | | | | | | | | - Stella Macpherson
- Primary Palliative Care Research Group, Usher Institute, The University of Edinburgh, Edinburgh, UK
| | | | - Kirsty Boyd
- Primary Palliative Care Research Group, Usher Institute, The University of Edinburgh, Edinburgh, UK
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Pérez-Ros P, Cauli O, Julián-Rochina I, Long CO, Chover-Sierra E. Level of Knowledge and Attitudes Towards Palliative Care for People with Advanced Dementia in Spain: Role of Professional and Academic Factors. Curr Alzheimer Res 2022; 19:785-794. [PMID: 36545733 DOI: 10.2174/1567205020666221221145259] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 08/24/2022] [Revised: 11/11/2022] [Accepted: 11/18/2022] [Indexed: 12/24/2022]
Abstract
BACKGROUND Providing quality end-of-life care to individuals with advanced dementia is crucial. To date, little attention has been paid to palliative care knowledge and attitudes toward palliative care for people with advanced dementia in Spain. OBJECTIVES To investigate the knowledge of and attitudes toward palliative care for advanced dementia among registered nurses and physicians in Spain. METHODS A descriptive, cross-sectional survey design was used. This study included a convenience sample of 402 nurses (n = 290) and physicians (n = 112). Two instruments were administered: demographic characteristics and Spanish version of the Questionnaire of Palliative Care for Advanced Dementia (qPAD-SV). Descriptive statistics and multiple regression were used for data analysis. RESULTS Overall, the nurses and physicians had moderate mean scores for both knowledge of and attitudes regarding palliative care for advanced dementia. Physicians had a higher level of knowledge (p < 0.05) compared to nurses. Additionally, physicians and nursing staff who had professional experience/ education in geriatrics and those who had received palliative care and hospice training had greater (p < 0.01) knowledge of palliative care. In addition, healthcare professionals who had received dementia care training and who had worked in nursing homes had higher levels (p < 0.05) of knowledge and attitudes toward palliative care. CONCLUSION This study indicates the need to provide nurses and physicians with more education for select groups of professionals who have had limited education and experience in caring for older adults with advanced dementia.
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Affiliation(s)
- Pilar Pérez-Ros
- Nursing Department, Facultat d'Infermeria i Podologia, University of Valencia, Valencia 46010, Spain
- Frailty Research Organized Group (FROG), University of Valencia, Valencia 46010, Spain
| | - Omar Cauli
- Nursing Department, Facultat d'Infermeria i Podologia, University of Valencia, Valencia 46010, Spain
- Frailty Research Organized Group (FROG), University of Valencia, Valencia 46010, Spain
| | - Iván Julián-Rochina
- Nursing Department, Facultat d'Infermeria i Podologia, University of Valencia, Valencia 46010, Spain
- Frailty Research Organized Group (FROG), University of Valencia, Valencia 46010, Spain
| | - Carol O Long
- Palliative Care Essentials, Fredericksburg, Virginia, USA
| | - Elena Chover-Sierra
- Nursing Department, Facultat d'Infermeria i Podologia, University of Valencia, Valencia 46010, Spain
- Nursing Care and Education Research Group (GRIECE), University of Valencia, Valencia 46010, Spain
- Internal Medicine, Consorcio Hospital General Universitario de Valencia, Valencia 46014, Spain
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Lin LS, Huang LH, Chang YC, Wang CL, Lee LC, Hu CC, Hsu PS, Chu WM. Trend analysis of palliative care consultation service for terminally ill non-cancer patients in Taiwan: a 9-year observational study. BMC Palliat Care 2021; 20:181. [PMID: 34823512 PMCID: PMC8614035 DOI: 10.1186/s12904-021-00879-z] [Citation(s) in RCA: 9] [Impact Index Per Article: 2.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 06/25/2021] [Accepted: 11/08/2021] [Indexed: 01/03/2023] Open
Abstract
Backgrounds Early integration of palliative care for terminally ill non-cancer patients improves quality of life. However, there are scanty data on Palliative Care Consultation Service (PCCS) among non-cancer patients. Methods In this 9-year observational study Data were collected from the Hospice-Palliative Clinical Database (HPCD) of Taichung Veterans General Hospital (TCVGH). Terminally ill non-cancer patients with 9 categories of diagnoses who received PCCS during 2011 to 2019 were enrolled. Trend analysis was performed to evaluate differences in categories of diagnosis throughout study period, duration of PCCS, patient outcomes, DNR declaration, awareness of disease by patients and families before and after PCCS. Results In total, 536 non-cancer patients received PCCS from 2011 to 2019 with an average age of 70.7 years. The average duration of PCCS was 18.4 days. The distributions of age, gender, patient outcomes, family’s awareness of disease before PCCS, and patient’s awareness of disease after PCCS were significantly different among the diagnoses. Organic brain disease and Chronic kidney disease (CKD) were the most prevalent diagnoses in patients receiving PCCS in 2019. For DNR declaration, the percentage of patients signing DNR before PCCS remained high throughout the study period (92.8% in 2019). Patient outcomes varied according to the disease diagnoses. Conclusion This 9-year observational study showed that the trend of PCCS among non-cancer patients had changed over the duration of the study. An increasing number of terminally ill non-cancer patients received PCCS during late life, thereby increasing the awareness of disease for both patients and families, which would tend to better prepare terminally ill patients for end-of-life as they may consider DNR consent. Early integration of PCCS into ordinary care for terminally non-cancer patients is essential for better quality of life. Supplementary Information The online version contains supplementary material available at 10.1186/s12904-021-00879-z.
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Affiliation(s)
- Lian-Shin Lin
- Department of Nursing, Taichung Veterans General Hospital, Taichung, Taiwan
| | - Ling-Hui Huang
- Department of Nursing, Taichung Veterans General Hospital, Taichung, Taiwan
| | - Yu-Chen Chang
- Technology Transfer and Incubation Center, National Health Research Institutes, Miaoli, Taiwan
| | - Chun-Li Wang
- Department of Family Medicine, Taichung Veterans General Hospital, Taichung, Taiwan.,Institute of Medicine, Chung Shan Medical University, Taichung, Taiwan
| | - Lung-Chun Lee
- Department of Family Medicine, Taichung Veterans General Hospital, Taichung, Taiwan
| | - Chung-Chieh Hu
- Department of Family Medicine, Taichung Veterans General Hospital, Taichung, Taiwan
| | - Pi-Shan Hsu
- Department of Family Medicine, Taichung Veterans General Hospital, Taichung, Taiwan
| | - Wei-Min Chu
- Department of Family Medicine, Taichung Veterans General Hospital, Taichung, Taiwan. .,Department of Occupational Medicine, Taichung Veterans General Hospital, Taichung, Taiwan. .,School of Medicine, National Yang Ming Chiao Tung University, Taipei, Taiwan. .,School of Medicine, Chung Shan Medical University, Taichung, Taiwan. .,Institue of Health Policy and Management, National Taiwan University, Taipei, Taiwan.
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Vestergaard AHS, Christiansen CF, Neergaard MA, Valentin JB, Johnsen SP. Healthcare utilisation trajectories in patients dying from chronic obstructive pulmonary disease, heart failure or cancer: a nationwide register-based cohort study. BMJ Open 2021; 11:e049661. [PMID: 34819282 PMCID: PMC8614146 DOI: 10.1136/bmjopen-2021-049661] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 11/17/2022] Open
Abstract
OBJECTIVES To investigate illness trajectories as reflected by healthcare utilisation, including hospital and intensive care unit admissions, consultations in general practice and home care provision, before death comparing people dying from chronic obstructive pulmonary disease (COPD), heart failure and cancer. DESIGN Nationwide register-based cohort study. SETTING Data on all hospital admissions, including intensive care unit admissions, consultations in general practice and home care provision were obtained from nationwide Danish registries. PARTICIPANTS All adult decedents in Denmark dying from COPD, heart failure or cancer between 2006 and 2016. OUTCOME MEASURES For each day within 5 years before death, we computed a daily prevalence proportion (PP) of being admitted to hospital or consulting a general practitioner. For each day within 6 months before death, we computed PPs of being admitted to intensive care or receiving home care. The PPs were plotted and compared by regression analyses adjusting for age, gender, comorbidity level, marital/cohabitation status, municipality and income level. RESULTS Among 1 74 086 patients dying from COPD (n=22 648), heart failure (n=11 498) or cancer (n=139 940), the PPs of being admitted to hospital or consulting a general practitioner showed similar steady progression and steep increase in the last year of life for all patient populations. The PP of being admitted to intensive care showed modest increase during the last 6 months of life, accelerating in the last month, for all patient populations. For patients with COPD and heart failure, the PP of receiving home care remained stable during the last 6 months of life but increased steadily for patients with cancer. CONCLUSION We found limited differences in healthcare resource utilisation at the end of life for people with COPD, heart failure or cancer, indicating comparable illness trajectories.This supports the need to reconsider efforts in achieving equal access to palliative care interventions, which is still mainly offered to patients with cancer.
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Affiliation(s)
- Anne Høy Seemann Vestergaard
- Department of Clinical Epidemiology, Aarhus University Hospital, Aarhus N, Denmark
- Department of Clinical Medicine, Aarhus University, Aarhus C, Denmark
| | - Christian Fynbo Christiansen
- Department of Clinical Epidemiology, Aarhus University Hospital, Aarhus N, Denmark
- Department of Clinical Medicine, Aarhus University, Aarhus C, Denmark
| | | | - Jan Brink Valentin
- Danish Center for Clinical Health Services Research, Aalborg University Hospital, Aalborg Ø, Denmark
- Department of Clinical Medicine, Aalborg University, Aalborg Ø, Denmark
| | - Søren Paaske Johnsen
- Danish Center for Clinical Health Services Research, Aalborg University Hospital, Aalborg Ø, Denmark
- Department of Clinical Medicine, Aalborg University, Aalborg Ø, Denmark
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Specialist palliative care teams and characteristics related to referral rate: a national cross-sectional survey among hospitals in the Netherlands. BMC Palliat Care 2021; 20:175. [PMID: 34758792 PMCID: PMC8582112 DOI: 10.1186/s12904-021-00875-3] [Citation(s) in RCA: 11] [Impact Index Per Article: 2.8] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Received: 04/08/2021] [Accepted: 10/18/2021] [Indexed: 11/18/2022] Open
Abstract
Background Specialist palliative care teams (SPCTs) in hospitals improve quality of life and satisfaction with care for patients with advanced disease. However, referrals to SPCTs are often limited. To identify areas for improvement of SPCTs’ service penetration, we explored the characteristics and level of integration of palliative care programmes and SPCTs in Dutch hospitals and we assessed the relation between these characteristics and specialist palliative care referral rates. Methods We performed a secondary analysis of a national cross-sectional survey conducted among hospitals in the Netherlands from March through May 2018. For this survey, a previously developed online questionnaire, containing 6 consensus-based integration indicators, was sent to palliative care programme leaders in all 78 hospitals. For referral rate we calculated the number of annual inpatient referrals to the SPCT as a percentage of the number of total annual hospital admissions. Referral rate was dichotomized into high (≥ third quartile) and low (< third quartile). Characteristics of SPCTs with high and low referral rate were compared using univariate analyses. P-values < 0.05 were considered significant. Results In total, 63 hospitals (81%) participated in the survey, of which 62 had an operational SPCT. The palliative care programmes of these hospitals consisted of inpatient consultation services (94%), interdisciplinary staffing (61%), outpatient clinics (45%), dedicated acute care beds (21%) and community-based palliative care (27%). The median referral rate was 0.56% (IQR 0.23–1.0%), ranging from 0 to 3.7%. Comparing SPCTs with high referral rate (≥1%, n = 17) and low referral rate (< 1%, n = 45) showed significant differences for SPCTs’ years of existence, staffing, their level of education, participation in other departments’ team meetings, provision of education and conducting research. With regard to integration, significant differences were found for the presence of outpatient clinics and timing of referrals. Conclusion In the Netherlands, palliative care programmes and specialist palliative care teams in hospitals vary in their level of integration and development, with more mature teams showing higher referral rates. Appropriate staffing, dedicated outpatient clinics, education and research appear means to improve service penetration and timing of referral for patients with advanced diseases. Supplementary Information The online version contains supplementary material available at 10.1186/s12904-021-00875-3.
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Mason B, Boyd K, Doubal F, Barber M, Brady M, Cowey E, Visvanathan A, Lewis S, Gallacher K, Morton S, Mead GE. Core Outcome Measures for Palliative and End-of-Life Research After Severe Stroke: Mixed-Method Delphi Study. Stroke 2021; 52:3507-3513. [PMID: 34266306 PMCID: PMC8547585 DOI: 10.1161/strokeaha.120.032650] [Citation(s) in RCA: 6] [Impact Index Per Article: 1.5] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 09/11/2020] [Revised: 05/14/2021] [Accepted: 06/10/2021] [Indexed: 11/23/2022]
Abstract
Background and Purpose Stroke is the second commonest cause of death worldwide and a leading cause of severe disability, yet there are no published trials of palliative care in stroke. To design and evaluate palliative care interventions for people with stroke, researchers need to know what measurable outcomes matter most to patients and families, stroke professionals, and other service providers. Methods A multidisciplinary steering group of professionals and laypeople managed the study. We synthesized recommendations from respected United Kingdom and international consensus documents to generate a list of outcome domains and then performed a rapid scoping literature review to identify potential outcome measures for use in future trials of palliative care after stroke. We then completed a 3-round, online Delphi survey of professionals, and service users to build consensus about outcome domains and outcome measures. Finally, we held a stakeholder workshop to review and finalize this consensus. Results We generated a list of 36 different outcome domains from 4 key policy documents. The rapid scoping review identified 43 potential outcome measures that were used to create a shortlist of 16 measures. The 36 outcome domains and 16 measures were presented to a Delphi panel of diverse healthcare professionals and lay service users. Of 48 panelists invited to take part, 28 completed all 3 rounds. Shared decision-making and quality of life were selected as the most important outcome domains for future trials of palliative care in stroke. Additional comments highlighted the need for outcomes to be feasible, measurable, and relevant beyond the initial, acute phase of stroke. The stakeholder workshop endorsed these results. Conclusions Future trials of palliative care after stroke should include pragmatic outcome measures, applicable to the evolving patient and family experiences after stroke and be inclusive of shared decision-making and quality of life.
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Affiliation(s)
- Bruce Mason
- Usher Institute (B.M., K.B., S.L., S.M, G.E.M)
| | - Kirsty Boyd
- Usher Institute (B.M., K.B., S.L., S.M, G.E.M)
| | | | - Mark Barber
- University of Edinburgh, University Hospital, Monklands, NHS Lanarkshire (M. Barber)
| | - Marian Brady
- Midwifery and Allied Health Professions Research Unit, Glasgow Caledonian University (M. Brady)
| | - Eileen Cowey
- Nursing & Health Care School (E.C.), University of Glasgow
| | | | - Steff Lewis
- Usher Institute (B.M., K.B., S.L., S.M, G.E.M)
| | - Katie Gallacher
- Institute of Health and Wellbeing (K.G.), University of Glasgow
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Abstract
The gold standard for diagnosis of osteoporosis is measurement of an individual's bone mineral density on dual-energy x-ray absorptiometry scan. If this value is less than or equal to 2.5 standard deviations less than that of an adult female reference population, a person is said to have osteoporosis, with this risk increasing as a person ages. Female gender is a large risk factor in developing osteoporosis, regardless of ethnic or racial group. Frailty is another key factor in determining likelihood to develop osteoporotic fractures. Bisphosphonates are the first line agents for treatment of osteoporosis.
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Affiliation(s)
- Ivy Akid
- Department of Medicine, Division of General Internal Medicine, Section of Palliative Medicine, JHUSOM, Johns Hopkins Hospital, 600 North Wolfe Street Blalock 371, Baltimore, MD 21287, USA.
| | - Danielle J Doberman
- Department of Medicine, Division of General Internal Medicine, Section of Palliative Medicine, Palliative Medicine Program, JHUSOM, Johns Hopkins Hospital, 600 North Wolfe Street Blalock 371, Baltimore, MD 21287, USA
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Quinn KL, Hsu AT, Meaney C, Qureshi D, Tanuseputro P, Seow H, Webber C, Fowler R, Downar J, Goldman R, Chan R, McGrail K, Isenberg SR. Association between high cost user status and end-of-life care in hospitalized patients: A national cohort study of patients who die in hospital. Palliat Med 2021; 35:1671-1681. [PMID: 33781119 PMCID: PMC8532234 DOI: 10.1177/02692163211002045] [Citation(s) in RCA: 3] [Impact Index Per Article: 0.8] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 11/16/2022]
Abstract
BACKGROUND Studies comparing end-of-life care between patients who are high cost users of the healthcare system compared to those who are not are lacking. AIM The objective of this study was to describe and measure the association between high cost user status and several health services outcomes for all adults in Canada who died in acute care, compared to non-high cost users and those without prior healthcare use. SETTINGS AND PARTICIPANTS We used administrative data for all adults who died in hospital in Canada between 2011 and 2015 to measure the odds of admission to the intensive care unit (ICU), receipt of invasive interventions, major surgery, and receipt of palliative care during the hospitalization in which the patient died. High cost users were defined as those in the top 10% of acute healthcare costs in the year prior to a person's hospitalization in which they died. RESULTS Among 252,648 people who died in hospital, 25,264 were high cost users (10%), 112,506 were non-high cost users (44.5%) and 114,878 had no prior acute care use (45.5%). After adjustment for age and sex, high cost user status was associated with a 14% increased odds of receiving an invasive intervention, a 15% increased odds of having major surgery, and an 8% lower odds of receiving palliative care compared to non-high cost users, but opposite when compared to patients without prior healthcare use. CONCLUSIONS Many patients receive aggressive elements of end-of-life care during the hospitalization in which they die and a substantial number do not receive palliative care. Understanding how this care differs between those who were previously high- and non-high cost users may provide an opportunity to improve end of life care for whom better care planning and provision ought to be an equal priority.
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Affiliation(s)
- Kieran L Quinn
- Department of Medicine, University of Toronto, Toronto, ON, Canada.,ICES, Toronto and Ottawa, ON, Canada.,Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada.,Department of Medicine, Sinai Health System, Toronto, ON, Canada
| | - Amy T Hsu
- ICES, Toronto and Ottawa, ON, Canada.,Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, ON, Canada.,School of Epidemiology, Public Health and Preventive Medicine, University of Ottawa, Ottawa, ON, Canada.,Bruyère Research Institute, Ottawa, ON, Canada
| | - Christopher Meaney
- Department of Family and Community Medicine, University of Toronto, Toronto, ON, Canada
| | - Danial Qureshi
- ICES, Toronto and Ottawa, ON, Canada.,Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, ON, Canada.,School of Epidemiology, Public Health and Preventive Medicine, University of Ottawa, Ottawa, ON, Canada.,Bruyère Research Institute, Ottawa, ON, Canada
| | - Peter Tanuseputro
- ICES, Toronto and Ottawa, ON, Canada.,Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, ON, Canada.,School of Epidemiology, Public Health and Preventive Medicine, University of Ottawa, Ottawa, ON, Canada.,Bruyère Research Institute, Ottawa, ON, Canada.,Division of Palliative Care, Department of Medicine, University of Ottawa, Ottawa, ON, Canada
| | - Hsien Seow
- Department of Oncology, McMaster University, Hamilton, ON, Canada
| | - Colleen Webber
- ICES, Toronto and Ottawa, ON, Canada.,Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, ON, Canada.,Bruyère Research Institute, Ottawa, ON, Canada
| | - Rob Fowler
- Tory Trauma Program, Sunnybrook Hospital, Interdepartmental Division of Critical Care Medicine, Department of Medicine, University of Toronto, Toronto, Ontario
| | - James Downar
- Bruyère Research Institute, Ottawa, ON, Canada.,Division of Palliative Care, Department of Medicine, University of Ottawa, Ottawa, ON, Canada
| | - Russell Goldman
- Department of Family and Community Medicine, University of Toronto, Toronto, ON, Canada.,Temmy Latner Centre for Palliative Care and Lunenfeld Tanenbaum Research Institute, Sinai Health System, Toronto, ON, Canada
| | - Raphael Chan
- Division of Palliative Care, Department of Medicine, University of Ottawa, Ottawa, ON, Canada
| | - Kimberlyn McGrail
- Centre for Health Services and Policy Research, School of Population and Public Health, The University of British Columbia, Vancouver, BC, Canada
| | - Sarina R Isenberg
- Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada.,Bruyère Research Institute, Ottawa, ON, Canada.,Department of Family and Community Medicine, University of Toronto, Toronto, ON, Canada.,Department of Medicine, University of Ottawa, ON, Canada
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Quinn KL, Stukel T, Huang A, Goldman R, Cram P, Detsky AS, Bell CM. Association Between Attending Physicians' Rates of Referral to Palliative Care and Location of Death in Hospitalized Adults With Serious Illness: A Population-based Cohort Study. Med Care 2021; 59:604-611. [PMID: 34100462 DOI: 10.1097/mlr.0000000000001524] [Citation(s) in RCA: 3] [Impact Index Per Article: 0.8] [Reference Citation Analysis] [Abstract] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/26/2022]
Abstract
BACKGROUND Patients who receive palliative care are less likely to die in hospital. OBJECTIVE To measure the association between physician rates of referral to palliative care and location of death in hospitalized adults with serious illness. RESEARCH DESIGN Population-based decedent cohort study using linked health administrative data in Ontario, Canada. SUBJECTS A total of 7866 physicians paired with 130,862 hospitalized adults in their last year of life who died of serious illness between 2010 and 2016. EXPOSURE Physician annual rate of referral to palliative care (high, average, low). MEASURES Odds of death in hospital versus home, adjusted for patient characteristics. RESULTS There was nearly 4-fold variation in the proportion of patients receiving palliative care during follow-up based on attending physician referral rates: high 42.4% (n=24,433), average 24.7% (n=10,772), low 10.7% (n=6721). Referral to palliative care was also associated with being referred by palliative care specialists and in urban teaching hospitals. The proportion of patients who died in hospital according to physician referral rate were 47.7% (high), 50.1% (average), and 52.8% (low). Hospitalized patients cared for by a physician who referred to palliative care at a high rate had lower risk of dying in hospital than at home compared with patients who were referred by a physician with an average rate of referral [adjusted odds ratio 0.91; 95% confidence interval, 0.86-0.95; number needed to treat=57 (interquartile range 41-92)] and by a physician with a low rate of referral [adjusted odds ratio 0.81; 95% confidence interval, 0.77-0.84; number needed to treat =28 patients (interquartile range 23-44)]. CONCLUSIONS AND RELEVANCE An attending physicians' rates of referral to palliative care is associated with a lower risk of dying in hospital. Therefore, patients who are cared for by physicians with higher rates of referral to palliative care are less likely to die in hospital and more likely to die at home. Standardizing referral to palliative care may help reduce physician-level variation as a barrier to access.
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Affiliation(s)
- Kieran L Quinn
- Department of Medicine, University of Toronto
- ICES
- Institute of Health Policy, Management and Evaluation, University of Toronto
- Department of Medicine
| | - Thérèse Stukel
- ICES
- Institute of Health Policy, Management and Evaluation, University of Toronto
| | | | - Russell Goldman
- Interdepartmental Division of Palliative Care, Sinai Health System
- Temmy Latner Centre for Palliative Care, Toronto, ON, Canada
| | - Peter Cram
- Department of Medicine, University of Toronto
- ICES
- Institute of Health Policy, Management and Evaluation, University of Toronto
- Department of Medicine
| | - Allan S Detsky
- Department of Medicine, University of Toronto
- Institute of Health Policy, Management and Evaluation, University of Toronto
- Department of Medicine
| | - Chaim M Bell
- Department of Medicine, University of Toronto
- ICES
- Institute of Health Policy, Management and Evaluation, University of Toronto
- Department of Medicine
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Truitt K, Khan SS, Gregory DL, Chuzi S, VanWagner LB. Deaths from hepatocellular carcinoma are more likely to occur in medical facilities than deaths from other cancers: 2003-2018. Liver Int 2021; 41:1489-1493. [PMID: 33932082 PMCID: PMC8822953 DOI: 10.1111/liv.14915] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 12/16/2020] [Revised: 03/09/2021] [Accepted: 04/24/2021] [Indexed: 12/27/2022]
Abstract
Place of death is a key indicator of quality of end-of-life care, and most people with a terminal diagnosis prefer to die at home. Home has surpassed the hospital as the most common location of all-cause and total cancer-related deaths in the United States. However, trends in place of death due to hepatocellular carcinoma (HCC), which is uniquely comanaged by hepatologists and oncologists, have not been described. We analysed US death certificate data from 2003 to 2018 for the proportion of deaths over time at medical facilities, nursing facilities, hospice facilities and home, for HCC and non-HCC cancer. The proportion of deaths increased from 0.6% to 15.2% in hospice facilities (P trend < 0.0001) but did not change at home. In multivariable analysis, persons with HCC were more likely than persons with non-HCC cancer to die in medical facilities, while persons with HCC were less likely to die at home.
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Affiliation(s)
- Katie Truitt
- Department of Internal Medicine, Northwestern McGaw/Northwestern Hospital, Chicago, IL, USA
| | - Sadiya S. Khan
- Department of Medicine, Division of Cardiology and Department of Preventive Medicine, Northwestern University Feinberg School of Medicine, Chicago, IL, USA
| | - Dyanna L. Gregory
- Department of Medicine, Division of Gastroenterology and Hepatology, Northwestern University Feinberg School of Medicine, Chicago, IL, USA
| | - Sarah Chuzi
- Department of Medicine, Division of Cardiology, Northwestern University Feinberg School of Medicine, Chicago, IL, USA
| | - Lisa B. VanWagner
- Department of Medicine, Division of Gastroenterology and Hepatology and Department of Preventive Medicine-Epidemiology, Northwestern University Feinberg School of Medicine, Chicago, IL, USA
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Association between Palliative Care, Days at Home, and Health Care Use in Patients with Advanced COPD: A Cohort Study. Ann Am Thorac Soc 2021; 19:48-57. [PMID: 34170780 DOI: 10.1513/annalsats.202007-859oc] [Citation(s) in RCA: 3] [Impact Index Per Article: 0.8] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/20/2022] Open
Abstract
RATIONALE Palliative care focuses on improving quality of life for patients with life-limiting conditions. While previous studies have shown palliative care to be associated with reduced acute health care use in people with cancer and other illnesses, these findings may not generalize to patients with COPD. OBJECTIVES We examined the association between palliative care and rates of days at home, location of death, and acute health care use in patients with COPD. METHODS We used health administrative databases in Ontario, Canada to identify patients with advanced COPD hospitalized between April 2010 and March 2017 and followed until March 2018. Patients who received palliative care were matched 1:1 to those who did not on age, sex, long-term oxygen, previous COPD hospitalizations and propensity scores. Rate ratios (RR) were estimated using Poisson models with generalized estimating equations to account for matching. RESULTS Among 35,492 patients, 1,788 (5%) received palliative care. In the matched cohort (1,721 pairs), people with COPD receiving palliative care had similar rates of days at home (RR=1.01, 95% CI [0.97, 1.05]) but were more likely to die at home (16.4% vs. 10.0%, p<0.001) compared to those who did not receive palliative care. Rates of healthcare utilization were similar except for increased hospitalizations in the palliative care group (RR=1.09, 95% CI [1.01, 1.18]). CONCLUSIONS Receipt of palliative care did not reduce days at home or healthcare utilization but was associated with a modest increase in proportion dying at home. Future work should evaluate palliative care strategies designed specifically for patients with COPD.
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Conen K, Guthrie DM, Stevens T, Winemaker S, Seow H. Symptom trajectories of non-cancer patients in the last six months of life: Identifying needs in a population-based home care cohort. PLoS One 2021; 16:e0252814. [PMID: 34129643 PMCID: PMC8205160 DOI: 10.1371/journal.pone.0252814] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 01/07/2021] [Accepted: 05/23/2021] [Indexed: 11/19/2022] Open
Abstract
INTRODUCTION The end-of-life symptom prevalence of non-cancer patients have been described mostly in hospital and institutional settings. This study aims to describe the average symptom trajectories among non-cancer patients who are community-dwelling and used home care services at the end of life. MATERIALS AND METHODS This is a retrospective, population-based cohort study of non-cancer patients who used home care services in the last 6 months of life in Ontario, Canada, between 2007 and 2014. We linked the Resident Assessment Instrument for Home Care (RAI-HC) (standardized home care assessment tool) and the Discharge Abstract Databases (for hospital deaths). Patients were grouped into four non-cancer disease groups: cardiovascular, neurological, respiratory, and renal (not mutually exclusive). Our outcomes were the average prevalence of these outcomes, each week, across the last 6 months of life: uncontrolled moderate-severe pain as per the Pain Scale, presence of shortness of breath, mild-severe cognitive impairment as per the Cognitive Performance Scale, and presence of caregiver distress. We conducted a multivariate logistic regression to identify factors associated with having each outcome respectively, in the last 6 months. RESULTS A total of 20,773 non-cancer patient were included in our study, which were analyzed by disease groups: cardiovascular (n = 12,923); neurological (n = 6,935); respiratory (n = 6,357); and renal (n = 3,062). Roughly 80% of patients were > 75 years and half were female. In the last 6 months of life, moderate to severe pain was frequent in the cardiovascular (57.2%), neurological (42.7%), renal (61.0%) and respiratory (58.3%) patients. Patients with renal disease had significantly higher odds for reporting uncontrolled moderate to severe pain (odds ratio [OR] = 1.21; 95% CI: 1.08 to 1.34) than those who did not. Patients with respiratory disease reported significantly higher odds for shortness of breath (5.37; 95% CI, 5.00 to 5.80) versus those who did not. Patients with neurological disease compared to those without were 9.65 times more likely to experience impaired cognitive performance and had 56% higher odds of caregiver distress (OR = 1.56; 95% CI: 1.43 to 1.71). DISCUSSION In our cohort of non-cancer patients dying in the community, pain, shortness of breath, impaired cognitive function and caregiver distress are important symptoms to manage near the end of life even in non-institutional settings.
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Affiliation(s)
- Katrin Conen
- Department of Medicine, McMaster University, Hamilton, Ontario, Canada
- Department of Family Medicine, Division of Palliative Care, McMaster University, Hamilton, Ontario, Canada
- * E-mail:
| | - Dawn M. Guthrie
- Department of Kinesiology & Physical Education Wilfrid Laurier University, Waterloo, Ontario, Canada
- Department of Health Sciences, Wilfrid Laurier University, Waterloo, Ontario, Canada
| | - Tara Stevens
- Department of Kinesiology & Physical Education Wilfrid Laurier University, Waterloo, Ontario, Canada
| | - Samantha Winemaker
- Department of Family Medicine, Division of Palliative Care, McMaster University, Hamilton, Ontario, Canada
| | - Hsien Seow
- Department of Family Medicine, Division of Palliative Care, McMaster University, Hamilton, Ontario, Canada
- Department of Oncology, McMaster University, Hamilton, Ontario, Canada
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Butler SJ, Gershon AS, Goodridge DM. Perspectives on Palliative Care in COPD. Chest 2021; 159:2133-2134. [PMID: 34099117 DOI: 10.1016/j.chest.2021.03.064] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 01/26/2021] [Accepted: 03/31/2021] [Indexed: 10/21/2022] Open
Affiliation(s)
- Stacey J Butler
- University of Toronto, Toronto, ON, Canada; Institute for Clinical Evaluation Sciences, Toronto, ON, Canada; Sunnybrook Research Institute, Toronto, ON, Canada
| | - Andrea S Gershon
- University of Toronto, Toronto, ON, Canada; Institute for Clinical Evaluation Sciences, Toronto, ON, Canada; Sunnybrook Research Institute, Toronto, ON, Canada
| | - Donna M Goodridge
- College of Medicine, University of Saskatchewan, Saskatoon, SK, Canada; Department of Medicine, Respiratory Research Centre, Saskatoon, SK, Canada.
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Prompantakorn P, Angkurawaranon C, Pinyopornpanish K, Chutarattanakul L, Aramrat C, Pateekhum C, Dejkriengkraikul N. Palliative Performance Scale and survival in patients with cancer and non-cancer diagnoses needing a palliative care consultation: a retrospective cohort study. BMC Palliat Care 2021; 20:74. [PMID: 34039322 PMCID: PMC8157447 DOI: 10.1186/s12904-021-00773-8] [Citation(s) in RCA: 19] [Impact Index Per Article: 4.8] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 01/28/2021] [Accepted: 05/13/2021] [Indexed: 11/12/2022] Open
Abstract
Background Palliative Performance Scale (PPS) has been frequently used to estimate the survival time of palliative care patients. The objective was to determine the associations between the PPS and survival time among cancer and non-cancer patients in Thailand. Methods This is a retrospective cohort study. All in-patient adults who received a palliative care consultation at Chiang Mai University Hospital between 1 July 2018 to 31 July 2019 were included in the study and were followed-up until 26 June 2020. The Palliative Performance Scale was assessed using the validated Thai-Palliative Performance Scale for Adults. Survival analysis was used to determine the association between the Palliative Performance Scale and survival time among cancer and non-cancer patients. Results Out of 407 patients, 220 were male (54.1%). There were 307 cancer patients (75.4%) and 100 non-cancer patients (24.6%). The PPS and survival time in cancer patients were significantly correlated. Cancer patients with PPS 10, 20, 30, 40–60, and 70–80% had a median survival time of 2, 6, 13, 39, and 95 days, respectively. Non-cancer patients with PPS 10, 20, and 30% had a median survival time of 8, 6, and 24 days, respectively. Conclusions While useful for estimating survival time for cancer patients, other factors should be taken into account in estimating the survival time for non-cancer patients. Supplementary Information The online version contains supplementary material available at 10.1186/s12904-021-00773-8.
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Affiliation(s)
| | - Chaisiri Angkurawaranon
- Department of Family Medicine, Faculty of Medicine, Chiang Mai University, Chiang Mai, Thailand
| | | | - Lalita Chutarattanakul
- Department of Family Medicine, Faculty of Medicine, Chiang Mai University, Chiang Mai, Thailand
| | - Chanchanok Aramrat
- Department of Family Medicine, Faculty of Medicine, Chiang Mai University, Chiang Mai, Thailand
| | - Chanapat Pateekhum
- Department of Family Medicine, Faculty of Medicine, Chiang Mai University, Chiang Mai, Thailand
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Evans CJ, Bone AE, Yi D, Gao W, Morgan M, Taherzadeh S, Maddocks M, Wright J, Lindsay F, Bruni C, Harding R, Sleeman KE, Gomes B, Higginson IJ. Community-based short-term integrated palliative and supportive care reduces symptom distress for older people with chronic noncancer conditions compared with usual care: A randomised controlled single-blind mixed method trial. Int J Nurs Stud 2021; 120:103978. [PMID: 34146843 DOI: 10.1016/j.ijnurstu.2021.103978] [Citation(s) in RCA: 26] [Impact Index Per Article: 6.5] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 01/25/2021] [Revised: 04/18/2021] [Accepted: 05/01/2021] [Indexed: 12/11/2022]
Abstract
BACKGROUND Globally, a rising number of people live into advanced age and die with multimorbidity and frailty. Palliative care is advocated as a person-centred approach to reduce health-related suffering and promote quality of life. However, no evidence-based interventions exist to deliver community-based palliative care for this population. AIM To evaluate the impact of the short-term integrated palliative and supportive care intervention for older people living with chronic noncancer conditions and frailty on clinical and economic outcomes and perceptions of care. DESIGN Single-blind trial with random block assignment to usual care or the intervention and usual care. The intervention comprised integrated person-centred palliative care delivered by multidisciplinary palliative care teams working with general practitioners and community nurses. Main outcome was change in five key palliative care symptoms from baseline to 12-weeks. Data analysis used intention to treat and complete cases to examine the mean difference in change scores and effect size between the trial arms. Economic evaluation used cost-effectiveness planes and qualitative interviews explored perceptions of the intervention. SETTING/PARTICIPANTS Four National Health Service general practices in England with recruitment of patients aged ≥75 years, with moderate to severe frailty, chronic noncancer condition(s) and ≥2 symptoms or concerns, and family caregivers when available. RESULTS 50 patients were randomly assigned to receive usual care (n = 26, mean age 86.0 years) or the intervention and usual care (n = 24, mean age 85.3 years), and 26 caregivers (control n = 16, mean age 77.0 years; intervention n = 10, mean age 77.3 years). Participants lived at home (n = 48) or care home (n = 2). Complete case analysis (n = 48) on the main outcome showed reduced symptom distress between the intervention compared with usual care (mean difference -1.20, 95% confidence interval -2.37 to -0.027) and medium effect size (omega squared = 0.071). Symptom distress reduced with decreased costs from the intervention compared with usual care, demonstrating cost-effectiveness. Patient (n = 19) and caregiver (n = 9) interviews generated themes about the intervention of 'Little things make a big difference' with optimal management of symptoms and 'Care beyond medicines' of psychosocial support to accommodate decline and maintain independence. CONCLUSIONS This palliative and supportive care intervention is an effective and cost-effective approach to reduce symptom distress for older people severely affected by chronic noncancer conditions. It is a clinically effective way to integrate specialist palliative care with primary and community care for older people with chronic conditions. Further research is indicated to examine its implementation more widely for people at home and in care homes. TRIAL REGISTRATION Controlled-Trials.com ISRCTN 45837097 Tweetable abstract: Specialist palliative care integrated with district nurses and GPs is cost-effective to reduce symptom distress for older people severely affected by chronic conditions.
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Affiliation(s)
- Catherine J Evans
- King's College London, Cicely Saunders Institute of Palliative Care, Policy and Rehabiliation, Bessemer Road, London, SE 9PJ, England; Martlets Hospice, Wayfield Avenue, Hove BN3 7LW, England; Sussex Community National Health Service Foundation Trust, Brighton General Hospital, Elm Grove, Brighton, BN2 3EW, England.
| | - Anna E Bone
- King's College London, Cicely Saunders Institute of Palliative Care, Policy and Rehabiliation, Bessemer Road, London, SE 9PJ, England.
| | - Deokhee Yi
- King's College London, Cicely Saunders Institute of Palliative Care, Policy and Rehabiliation, Bessemer Road, London, SE 9PJ, England.
| | - Wei Gao
- King's College London, Cicely Saunders Institute of Palliative Care, Policy and Rehabiliation, Bessemer Road, London, SE 9PJ, England.
| | - Myfanwy Morgan
- Institute of Pharmaceutical Science, King's College London, Franklin-Wilkins Building, Stamford Street, London SE1 9NH, England.
| | - Shamim Taherzadeh
- Northbourne Medical Centre, 193A Upper Shoreham Road, Shoreham-by-Sea, BN43 6BT, England.
| | - Matthew Maddocks
- King's College London, Cicely Saunders Institute of Palliative Care, Policy and Rehabiliation, Bessemer Road, London, SE 9PJ, England.
| | - Juliet Wright
- University of Sussex, Brighton and Sussex Medical School, Falmer, Brighton, BN1 9RH, England.
| | - Fiona Lindsay
- Martlets Hospice, Wayfield Avenue, Hove BN3 7LW, England; Sussex Community National Health Service Foundation Trust, Brighton General Hospital, Elm Grove, Brighton, BN2 3EW, England.
| | - Carla Bruni
- Sussex Community National Health Service Foundation Trust, Brighton General Hospital, Elm Grove, Brighton, BN2 3EW, England.
| | - Richard Harding
- King's College London, Cicely Saunders Institute of Palliative Care, Policy and Rehabiliation, Bessemer Road, London, SE 9PJ, England.
| | - Katherine E Sleeman
- King's College London, Cicely Saunders Institute of Palliative Care, Policy and Rehabiliation, Bessemer Road, London, SE 9PJ, England.
| | - Barbara Gomes
- King's College London, Cicely Saunders Institute of Palliative Care, Policy and Rehabiliation, Bessemer Road, London, SE 9PJ, England.
| | - Irene J Higginson
- King's College London, Cicely Saunders Institute of Palliative Care, Policy and Rehabiliation, Bessemer Road, London, SE 9PJ, England.
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Higginbotham K, Jones I, Johnson M. A grounded theory study: Exploring health care professionals decision making when managing end stage heart failure care. J Adv Nurs 2021; 77:3142-3155. [PMID: 33991123 DOI: 10.1111/jan.14852] [Citation(s) in RCA: 3] [Impact Index Per Article: 0.8] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 08/30/2020] [Revised: 03/16/2021] [Accepted: 03/21/2021] [Indexed: 11/27/2022]
Abstract
AIM To explore how healthcare professionals in an acute medical setting make decisions when managing the care of patients diagnosed with end stage heart failure, and how these decisions impact directly on the patient's end of life experience. DESIGN A constructivist grounded theory approach was adopted. METHOD A purposive sample was used to recruit participants that included 16 registered nurses, 15 doctors and 16 patients. Data were collected using semi-structured interviews and focus groups over a 12-month period of fieldwork concluding in 2017. The interviews were recorded and transcribed and the data were analysed using constant comparison and QSR NVivo. FINDINGS Four theoretical categories emerged from the data to explain how healthcare professionals and patients negotiated the process of decision making when considering end of life care. These were: signposting symptoms, organizing care, being informed and recognizing dying. The themes revolved around a core category 'a vicious cycle of heart failure care'. CONCLUSION Healthcare professionals need to engage in informed decision making with patients to break this 'vicious cycle of care' by identifying key stages in the terminal phase of heart failure and correctly signposting the patient to the most suitable healthcare care professional for intervention. IMPACT This study provides a theoretical framework to explain a 'vicious cycle of care' for patients diagnosed with end stage heart failure. This theory grounded in data demonstrates the need for both acute and primary care to design an integrative end of life care pathway for heart failure patients which addresses the need for early shared decision making between the healthcare professional, family and the patient when it comes to end of life conversations.
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Affiliation(s)
- Karen Higginbotham
- School of Nursing and Allied Health, Liverpool John Moore University, Liverpool, UK
| | - Ian Jones
- School of Nursing and Allied Health, Liverpool John Moore University, Liverpool, UK
| | - Martin Johnson
- School of Health and Society, University of Salford, Manchester, UK
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Lackraj D, Kavalieratos D, Murali KP, Lu Y, Hua M. Implementation of Specialist Palliative Care and Outcomes for Hospitalized Patients with Dementia. J Am Geriatr Soc 2021; 69:1199-1207. [PMID: 33523466 PMCID: PMC8202070 DOI: 10.1111/jgs.17032] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 10/21/2020] [Revised: 12/22/2020] [Accepted: 12/28/2020] [Indexed: 12/12/2022]
Abstract
BACKGROUND In patients with serious illness, use of specialist palliative care may result in improved quality of life, patient and caregiver satisfaction and advance care planning, as well as lower health care utilization. However, evidence of efficacy is limited for patients with dementia, particularly in the setting of an acute hospitalization. OBJECTIVE To determine whether implementation of hospital-based specialist palliative care was associated with differences in treatment intensity outcomes for hospitalized patients with dementia. DESIGN Retrospective cohort study. SETTING Fifty-one hospitals in New York State that either did or did not implement a palliative care program between 2008 and 2014. Hospitals that consistently had a palliative care program during the study period were excluded. PARTICIPANTS Hospitalized patients with dementia. MEASUREMENTS The primary outcome of this study was discharge to hospice from an acute hospitalization. Secondary outcomes included hospital length of stay, use of mechanical ventilation and dialysis, and days in intensive care. Difference-in-difference analyses were performed using multilevel regression to assess the association between implementing a palliative care program and outcomes, while adjusting for patient and hospital characteristics and time trends. RESULTS During the study period, 82,118 patients with dementia (mean (SD) age, 83.04 (10.04), 51,170 (62.21%) female) underwent an acute hospitalization, of which 41,227 (50.27%) received care in hospitals that implemented a palliative care program. In comparison to patients who received care in hospitals without palliative care, patients with dementia who received care in hospitals after the implementation of palliative care were more 35% likely to be discharged to hospice (adjusted odds ratio (aOR) = 1.35 (1.19-1.51), P < .001). No meaningful differences in secondary outcomes were observed. CONCLUSION Implementation of a specialist palliative care program was associated with an increase in discharge to hospice following acute hospitalization in patients with dementia.
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Affiliation(s)
- Deven Lackraj
- Department of Anesthesiology, Columbia University Medical Center, New York Presbyterian Hospital, New York, New York, USA
| | - Dio Kavalieratos
- Division of Palliative Medicine, Department of Family and Preventative Medicine, Emory University, Atlanta, Georgia, USA
| | - Komal P Murali
- School of Nursing, Columbia University, New York, New York, USA
| | - Yewei Lu
- Department of Anesthesiology, Columbia University Medical Center, New York Presbyterian Hospital, New York, New York, USA
| | - May Hua
- Department of Anesthesiology, Columbia University Medical Center, New York Presbyterian Hospital, New York, New York, USA
- Department of Epidemiology, Columbia University Mailman School of Public Health, New York, New York, USA
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Earp M, Cai P, Fong A, Blacklaws K, Pham TM, Shack L, Sinnarajah A. Hospital-based acute care in the last 30 days of life among patients with chronic disease that received early, late or no specialist palliative care: a retrospective cohort study of eight chronic disease groups. BMJ Open 2021; 11:e044196. [PMID: 33762238 PMCID: PMC7993357 DOI: 10.1136/bmjopen-2020-044196] [Citation(s) in RCA: 14] [Impact Index Per Article: 3.5] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 11/03/2022] Open
Abstract
OBJECTIVE For eight chronic diseases, evaluate the association of specialist palliative care (PC) exposure and timing with hospital-based acute care in the last 30 days of life. DESIGN Retrospective cohort study using administrative data. SETTING Alberta, Canada between 2007 and 2016. PARTICIPANTS 47 169 adults deceased from: (1) cancer, (2) heart disease, (3) dementia, (4) stroke, (5) chronic lower respiratory disease (chronic obstructive pulmonary disease (COPD)), (6) liver disease, (7) neurodegenerative disease and (8) renovascular disease. MAIN OUTCOME MEASURES The proportion of decedents who experienced high hospital-based acute care in the last 30 days of life, indicated by ≥two emergency department (ED) visit, ≥two hospital admissions,≥14 days of hospitalisation, any intensive care unit (ICU) admission, or death in hospital. Relative risk (RR) and risk difference (RD) of hospital-based acute care given early specialist PC exposure (≥90 days before death), adjusted for patient characteristics. RESULTS In an analysis of all decedents, early specialist PC exposure was associated with a 32% reduction in risk of any hospital-based acute care as compared with those with no PC exposure (RR 0.69, 95% CI 0.66 to 0.71; RD 0.16, 95% CI 0.15 to 0.17). The association was strongest in cancer-specific analyses (RR 0.53, 95% CI 0.50 to 0.55; RD 0.31, 95% CI 0.29 to 0.33) and renal disease-specific analyses (RR 0.60, 95% CI 0.43 to 0.84; RD 0.22, 95% CI 0.11 to 0.34), but a~25% risk reduction was observed for each of heart disease, COPD, neurodegenerative diseases and stroke. Early specialist PC exposure was associated with reducing risk of four out of five individual indicators of high hospital-based acute care in the last 30 days of life, including ≥two ED visit,≥two hospital admission, any ICU admission and death in hospital. CONCLUSIONS Early specialist PC exposure reduced the risk of hospital-based acute care in the last 30 days of life for all chronic disease groups except dementia.
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Affiliation(s)
- Madalene Earp
- Division of Palliative Medicine, Department of Oncology, Cumming School of Medicine, University of Calgary, Calgary, Alberta, Canada
| | - Pin Cai
- Clinical Workforce Planning, Alberta Health Services, Calgary, Alberta, Canada
| | - Andrew Fong
- Data & Analytics, Alberta Health Services, Calgary, Alberta, Canada
| | - Kelly Blacklaws
- Data & Analytics, Alberta Health Services, Calgary, Alberta, Canada
| | - Truong-Minh Pham
- Surveillance and Reporting, Cancer Research and Analytics, Cancer Care Alberta, Alberta Health Services, Calgary, Alberta, Canada
| | - Lorraine Shack
- Surveillance and Reporting, Cancer Research and Analytics, Cancer Care Alberta, Alberta Health Services, Calgary, Alberta, Canada
| | - Aynharan Sinnarajah
- Division of Palliative Medicine, Department of Oncology, Cumming School of Medicine, University of Calgary, Calgary, Alberta, Canada
- Palliative & End of Life Care Program, Calgary Zone, Alberta Health Services, Calgary, Alberta, Canada
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