scholarly journals death-dying-and-end-of-life-care-in-the-us-and-the-netherlands-a-scoping-review

2020 ◽  
Vol 4 (2) ◽  
pp. em0042
Author(s):  
Adnan Kisa ◽  
Shaheda Rizvi ◽  
Mustafa Younis
Author(s):  
Daisy J. Janssen ◽  
J. R. Curtis ◽  
David H. Au ◽  
Martijn A. Spruit ◽  
Lois Downey ◽  
...  

2018 ◽  
Vol 34 (1) ◽  
pp. 62-69 ◽  
Author(s):  
Erin Relyea ◽  
Brooke MacDonald ◽  
Christina Cattaruzza ◽  
Denise Marshall

Schizophrenia is a serious chronic mental illness that results in marginalization and stigma for sufferers. It is the seventh leading cause for disability worldwide. The symptoms of the illness, including hallucinations, delusions, and extremely disordered thinking and behavior, may also introduce barriers to accessing treatment, education, housing, and employment. Little is known about end-of-life care for individuals with schizophrenia. To address this gap, a scoping review was conducted to enhance understanding of hospice and palliative care for patients with schizophrenia. From this scoping review, 342 unique titles and abstracts were identified through a search of 20 databases, including 11 social science databases, 6 medical databases, and 3 gray literature databases. A total of 32 articles met the inclusion criteria and the following 4 themes were identified: Stigma affecting quality of care and access to care; Issues related to consent and capacity for the patient’s end-of-life care decisions and to appoint substitute decision makers; Best practices for psychosocial interventions, pharmacology, family and health-care collaborations, goals of care, setting, and smoking; and Barriers to care, including setting, communication, provider education, and access to care. The review suggests the importance of mandatory interdisciplinary training practices and policy standards outlining cooperative communication across health-care providers. It highlights gaps in evidence-based research on psychosocial interventions and collaborative frameworks to enable the provision of quality end-of-life care for individuals with schizophrenia.


2006 ◽  
Vol 62 (6) ◽  
pp. 1552-1563 ◽  
Author(s):  
Mette L. Rurup ◽  
Bregje D. Onwuteaka-Philipsen ◽  
Agnes van der Heide ◽  
Gerrit van der Wal ◽  
Dorly J.H. Deeg

F1000Research ◽  
2020 ◽  
Vol 9 ◽  
pp. 1438
Author(s):  
Suman Budhwani ◽  
Ashlinder Gill ◽  
Mary Scott ◽  
Walter P. Wodchis ◽  
JinHee Kim ◽  
...  

Background: A plethora of performance measurement indicators for palliative and end-of-life care currently exist in the literature. This often leads to confusion, inconsistency and redundancy in efforts by health systems to understand what should be measured and how.  The objective of this study was to conduct a scoping review to provide an inventory of performance measurement indicators that can be measured using population-level health administrative data, and to summarize key concepts for measurement proposed in the literature.  Methods: A scoping review using MEDLINE and EMBASE, as well as grey literature was conducted.  Articles were included if they described performance or quality indicators of palliative and end-of-life care at the population-level using routinely-collected administrative data.  Details on the indicator such as name, description, numerator, and denominator were charted. Results: A total of 339 indicators were extracted.  These indicators were classified into nine health care sectors and one cross-sector category.  Extracted indicators emphasized key measurement themes such as health utilization and cost and excessive, unnecessary, and aggressive care particularly close to the end-of-life.  Many indicators were often measured using the same constructs, but with different specifications, such as varying time periods used to ascribe for end-of-life care, and varying patient populations.  Conclusions: Future work is needed to achieve consensus ‘best’ definitions of these indicators as well as a universal performance measurement framework, similar to other ongoing efforts in population health.  Efforts to monitor palliative and end-of-life care can use this inventory of indicators to select appropriate indicators to measure health system performance.


1997 ◽  
Vol 6 (2) ◽  
pp. 189-204 ◽  
Author(s):  
Timothy E. Quill ◽  
Gerrit Kimsma

Voluntary active euthanasia (VAE) and physician-assisted suicide (PAS) remain technically illegal in the Netherlands, but the practices are openly tolerated provided that physicians adhere to carefully constructed guidelines. Harsh criticism of the Dutch practice by authors in the United States and Great Britain has made achieving a balanced understanding of its clinical, moral, and policy implications very difficult. Similar practice patterns probably exist in the United States, but they are conducted in secret because of a more uncertain legal and ethical climate. In this manuscript, we plan to compare end-of-life care in the United States and the Netherlands with regard to underlying values, justifications, and practices. We will explore the risks and benefits of each system for a real patient who was faced with a common end-of-life clinical dilemma, and close with challenges for public policies in both countries.


Author(s):  
Michael K. Gusmano ◽  
Victor G. Rodwin ◽  
Daniel Weisz ◽  
Jonathan Cottenet ◽  
Catherine Quantin

2018 ◽  
Vol 99 (4) ◽  
pp. 301-316 ◽  
Author(s):  
Daniel S. Gardner ◽  
Meredith Doherty ◽  
Gleneara Bates ◽  
Aliza Koplow ◽  
Sarah Johnson

Despite the advances and spread of palliative care programs, communities of color remain significantly underserved. Although these disparities are widely known, there is a marked lack of empirical evidence. The authors conducted a systematic scoping review that synthesized the literature since 2000 about racial and ethnic disparities in palliative and end-of-life care. We searched PubMed, Medline, SocIndex, CINAHL, Social Work Abstracts, and PsycINFO, using search terms including palliative care or end-of-life care, disparities or barriers or utilization, and race or ethnicity or African American or Hispanic. Findings lend support to extant literature that social-environmental barriers and disparities distinctly affect access to care for these populations. The review expands upon understanding of how social determinants drive disparities in palliative and end-of-life care and suggests implications for practice, policy, and research in promoting health equity in serious illness.


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