Health System Intervention to Improve Communication About End-of-Life Care for Vulnerable Patients

PURPOSE: To determine whether the type of delivery system is associated with intensity of care at the end of life for Medicare beneficiaries with cancer. PATIENTS AND METHODS: We used SEER registry data linked with Medicare claims to evaluate intensity of end-of-life care for patients who died of one of ten common cancers diagnosed from 2009 through 2014. Patients were categorized as receiving the majority of their care in an integrated delivery system, designated cancer center, health system that was both integrated and a certified cancer center, or health system that was neither. We evaluated adherence to seven nationally endorsed end-of-life quality measures using generalized linear models across four delivery system types. RESULTS: Among 100,549 beneficiaries who died of cancer during the study interval, we identified only modest differences in intensity of end-of-life care across delivery system structures. Health systems with no cancer center or integrated affiliation demonstrated higher proportions of patients with multiple hospitalizations in the last 30 days of life (11.3%), death in an acute care setting (25.9%), and lack of hospice use in the last year of life (31.6%; all P < .001). Patients enrolled in hospice had lower intensity care across multiple end-of-life quality measures. CONCLUSION: Intensity of care at the end of life for patients with cancer was higher at delivery systems with no integration or cancer focus. Maximal supportive care delivered through hospice may be one avenue to reduce high-intensity care at the end of life and may impact quality of care for patients dying from cancer.

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Multi-dimensional approach to end-of-life care: The Welfare Model

Nursing Ethics ◽

10.1177/0969733018806705 ◽

2018 ◽

Vol 26 (7-8) ◽

pp. 1955-1967

Author(s):

Shin Wei Sim ◽

Tze Ling Gwendoline Beatrice Soh ◽

Lalit Kumar Radha Krishna

Keyword(s):

Decision Making ◽

End Of Life ◽

End Of Life Care ◽

Clinical Care ◽

Best Interests ◽

Life Care ◽

Clinical Practices ◽

Vulnerable Patients ◽

Team Evaluation ◽

Welfare Model

Appropriate and balanced decision-making is sentinel to goal setting and the provision of appropriate clinical care that are attuned to preserving the best interests of the patient. Current family-led decision-making in family-centric societies such as those in Singapore and other countries in East Asia are believed to compromise these objectives in favor of protecting familial interests. Redressing these skewed clinical practices employing autonomy-based patient-centric approaches however have been found wanting in their failure to contend with wider sociocultural considerations that impact care determinations. Evaluation of a number of alternative decision-making frameworks set out to address the shortcomings of prevailing atomistic and family-centric decision-making models within the confines of end-of-life care prove these alternative frameworks to be little better at protecting the best interests of vulnerable patients. As a result, we propose the Welfare Model that we believe is attentive to the relevant socio-culturally significant considerations of a particular case and better meets the needs of end-of-life care goals of preserving the welfare of patients. Employing a multi-professional team evaluation guided by regnant psychosocial, legal, and clinical standards and the prevailing practical and clinical realities of the particular patient’s setting the Welfare Model provides a clinically relevant, culturally sensitive, transparent, and evidence-based approach to care determinations.

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District nurse consultations with vulnerable patients over wishes for end-of-life care

British Journal of Community Nursing ◽

10.12968/bjcn.2014.19.9.458 ◽

2014 ◽

Vol 19 (9) ◽

pp. 458-460 ◽

Cited By ~ 1

Author(s):

Richard Griffith

Keyword(s):

End Of Life ◽

End Of Life Care ◽

Life Care ◽

District Nurse ◽

Vulnerable Patients

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Goals of care designation associated with improved survival and indicators of quality end-of-life care in pancreatic cancer (PC) patients (pts) undergoing palliative chemotherapy.

Journal of Clinical Oncology ◽

10.1200/jco.2019.37.15_suppl.11532 ◽

2019 ◽

Vol 37 (15_suppl) ◽

pp. 11532-11532

Author(s):

Matthew Anaka ◽

Jennifer L. Spratlin ◽

Winson Y. Cheung ◽

Sunita Ghosh ◽

Minji Lee

Keyword(s):

Overall Survival ◽

Health System ◽

End Of Life ◽

End Of Life Care ◽

Palliative Chemotherapy ◽

Cox Regression ◽

Cohort Analysis ◽

Locally Advanced ◽

Life Care ◽

Goals Of Care

11532 Background: Discussion of goals of care (GoC) is a key part of quality care for pts with palliative cancer. Numerous studies have shown that documentation of GoC in this population remains low. Here we describe changes in GoC documentation and other indicators of quality end-of-life care in PC pts undergoing palliative chemotherapy during a health-system wide initiative to improve advanced care planning (ACP). Methods: This is a retrospective cohort analysis of 106 pts with locally advanced or metastatic PC treated with palliative chemotherapy from 2012-2015 in Northern Alberta (Canada). In 2014, an initiative was launched to provide pts with hard copies of their GoC designation intended to be available at all health-system interactions. Data were obtained from outpatient medical oncology (MO) and palliative care (PAL) notes and the provincial cancer registry. Survival analysis used a multivariate Cox-regression. All other tests were Chi-squared. Results: 50% (53/106) of pts had a documented GoC discussion, with 45% (48/106) receiving a specific GoC designation. In 2012, 31% (6/19) of pts had a GoC designation, which increased to 61% (20/33) in 2015. Of 84 individual GoC discussions documented, 34% (29/84) were by MO, 62% (52/84) were by PAL, and at least 8% (7/84) referenced prior discussions with a family physician or discussion while admitted to hospital. Pts with a GoC designation had increased median overall survival (287 vs 216 days; HR = 0.62; p = 0.041), and were less likely to receive chemotherapy in the last two weeks of life (p = 0.016). Conclusions: Rates of GoC discussions for PC pts undergoing palliative chemotherapy increased during a health-system wide ACP initiative. Having a GoC designation was associated with greater overall survival and indicators of higher quality end-of-life care.

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Use and Predictors of End-of-Life Care Among HIV Patients in a Safety Net Health System

Journal of Pain and Symptom Management ◽

10.1016/j.jpainsymman.2015.08.010 ◽

2016 ◽

Vol 51 (1) ◽

pp. 120-125 ◽

Cited By ~ 8

Author(s):

Ramona L. Rhodes ◽

Fiza Nazir ◽

Sonya Lopez ◽

Lei Xuan ◽

Ank E. Nijhawan ◽

...

Keyword(s):

Health System ◽

End Of Life ◽

End Of Life Care ◽

Safety Net ◽

Life Care ◽

Hiv Patients

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Using administrative health data for palliative and end of life care research in Ireland: potential and challenges

HRB Open Research ◽

10.12688/hrbopenres.13215.2 ◽

2021 ◽

Vol 4 ◽

pp. 17

Author(s):

Maria Kelly ◽

Katie M O'Brien ◽

Ailish Hannigan

Keyword(s):

Palliative Care ◽

Health System ◽

End Of Life ◽

Data Protection ◽

End Of Life Care ◽

Social Care ◽

Data Access ◽

Life Care ◽

Health And Social Care ◽

Data Collections

Background: This study aims to examine the potential of currently available administrative health and social care data for palliative and end-of-life care (PEoLC) research in Ireland. Objectives include to i) identify data sources for PEoLC research ii) describe the challenges and opportunities of using these and iii) evaluate the impact of recent health system reforms and changes to data protection laws. Methods: The 2017 Health Information and Quality Authority catalogue of health and social care datasets was cross-referenced with a recognised list of diseases with associated palliative care needs. Criteria to assess the datasets included population coverage, data collected, data dictionary and data model availability, and mechanisms for data access. Results: Nine datasets with potential for PEoLC research were identified, including death certificate data, hospital episode data, pharmacy claims data, one national survey, four disease registries (cancer, cystic fibrosis, motor neurone and interstitial lung disease) and a national renal transplant registry. The ad hoc development of the health system in Ireland has resulted in i) a fragmented information infrastructure resulting in gaps in data collections particularly in the primary and community care sector where much palliative care is delivered, ii) ill-defined data governance arrangements across service providers, many of whom are not part of the publically funded health service and iii) systemic and temporal issues that affect data quality. Initiatives to improve data collections include introduction of i) patient unique identifiers, ii) health entity identifiers and iii) integration of the Eircode postcodes. Recently enacted general data protection and health research regulations will clarify legal and ethical requirements for data use. Conclusions: Ongoing reform initiatives and recent changes to data privacy laws combined with detailed knowledge of the datasets, appropriate permissions, and good study design will facilitate future use of administrative health and social care data for PEoLC research in Ireland.

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Goals of care and COVID-19: A GOOD framework for dealing with uncertainty

Palliative & Supportive Care ◽

10.1017/s1478951520000474 ◽

2020 ◽

Vol 18 (4) ◽

pp. 379-381

Author(s):

Aldis H. Petriceks ◽

Andrea Wershof Schwartz

Keyword(s):

Palliative Care ◽

End Of Life ◽

End Of Life Care ◽

Life Care ◽

Critical Component ◽

Deep Uncertainty ◽

Goals Of Care ◽

Vulnerable Patients

AbstractAs the COVID-19 pandemic continues, more patients will require palliative and end-of-life care. In order to ensure goal-concordant-care when possible, clinicians should initiate goals-of-care conversations among our most vulnerable patients and, ideally, among all patients. However, many non-palliative care clinicians face deep uncertainty in planning, conducting, and evaluating such interactions. We believe that specialists within palliative care are aptly positioned to address such uncertainties, and in this article offer a relevant update to a concise framework for clinicians to plan, conduct, and evaluate goals-of-care conversations: the GOOD framework. Once familiar with this framework, palliative care clinicians may use it to educate their non-palliative care colleagues about a timely and critical component of care, now and beyond the COVID-19 era.

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Improving End-of Life Care: Implementation and Evaluation of the 3 Wishes Project in an American Health System (GP771)

Journal of Pain and Symptom Management ◽

10.1016/j.jpainsymman.2020.04.198 ◽

2020 ◽

Vol 60 (1) ◽

pp. 287-288

Author(s):

Thanh Neville ◽

Peter Phung ◽

Danielle Bear ◽

Neha Agarwal ◽

Xueqing Xu ◽

...

Keyword(s):

Health System ◽

End Of Life ◽

End Of Life Care ◽

Life Care

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Using linked administrative health data for palliative and end of life care research in Ireland: potential and challenges

HRB Open Research ◽

10.12688/hrbopenres.13215.1 ◽

2021 ◽

Vol 4 ◽

pp. 17

Author(s):

Maria Kelly ◽

Katie O'Brien ◽

Ailish Hannigan

Keyword(s):

Palliative Care ◽

Health System ◽

End Of Life ◽

Data Protection ◽

End Of Life Care ◽

Data Access ◽

Health Data ◽

Life Care ◽

Administrative Health Data ◽

Data Collections

Background: This study aims to examine the potential of currently available administrative health data for palliative and end-of-life care (PEoLC) research in Ireland. Objectives include to i) identify administrative health data sources for PEoLC research ii) describe the challenges and opportunities of using these and iii) estimate the impact of recent health system reforms and changes to data protection laws. Methods: The 2017 Health Information and Quality Authority catalogue of health and social care datasets was cross-referenced with a recognised list of diseases with associated palliative care needs. Criteria to assess the datasets included population coverage, data collected, data dictionary and data model availability and mechanisms for data access. Results: Eight datasets with potential for PEoLC research were identified, including four disease registries, (cancer, cystic fibrosis, motor neurone and interstitial lung disease), death certificate data, hospital episode data, community prescription data and one national survey. The ad hoc development of the health system in Ireland has resulted in i) a fragmented information infrastructure resulting in gaps in data collections particularly in the primary and community care sector where much palliative care is delivered, ii) ill-defined data governance arrangements across service providers, many of whom are not part of the publically funded health service and iii) systemic and temporal issues that affect data quality. Initiatives to improve data collections include introduction of i) patient unique identifiers, ii) health entity identifiers and iii) integration of the eircode postcodes. Recently enacted general data protection and health research regulations will clarify legal and ethical requirements for data use. Conclusions: With appropriate permissions, detailed knowledge of the datasets and good study design currently available administrative health data can be used for PEoLC research. Ongoing reform initiatives and recent changes to data privacy laws will facilitate future use of administrative health data for PEoLC research.

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The impact of public health palliative care interventions on health system outcomes: A systematic review

Palliative Medicine ◽

10.1177/0269216320981722 ◽

2020 ◽

pp. 026921632098172

Author(s):

Anna Collins ◽

Julia E. H. Brown ◽

Jason Mills ◽

Jennifer Philip

Keyword(s):

Public Health ◽

Systematic Review ◽

Palliative Care ◽

Health System ◽

End Of Life ◽

End Of Life Care ◽

Service Use ◽

Synthesis Method ◽

Life Care ◽

The Impact

Background: Public health palliative care interventions are increasingly implemented, with growing recognition of the importance of building evidence to support their utility in end-of-life care. Previous efforts have focused on community outcomes. Aim: To examine the impact of public health palliative care on patterns of health service use at the end of life (primary) and explore which outcomes are being measured within this field of research (secondary). Design: Systematic review of studies reporting qualitative and quantitative data, analysed with a narrative synthesis method. Data sources: A systematic review conducted and reported according to the Preferred Reporting Items for Systematic Reviews and Meta Analyses guideline was undertaken using six electronic databases (MEDLINE, CINAHL, EMBASE, PsycINFO, INFORMIT and COCHRANE) up to February 2020. Results: Searches yielded 2622 unique titles screened for eligibility, resulting in 35 studies measuring outcomes from a public health palliative care approach. Five (14%) studies assessed health system outcomes, and three reported some mixed evidence of impact, including reduced hospital emergency admissions, hospital bed days, hospital costs and increased home deaths. Most studies (86%) instead reported on conceptual (49%), knowledge (40%), programme participation (37%) and/or individual health outcomes (29%). Conclusion: The impact of public health palliative care is an evolving area of empirical inquiry with currently only limited evidence that it improves healthcare utilisation outcomes at the end of life, and limited focus on measurement of these outcomes. Further empirical studies are needed to support the reorientation of health services, which remains an important component in realising ‘whole of system change’ to bring about quality end-of-life care for all.

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