scholarly journals Patient Portal Use Near the End-of-Life

2021 ◽  
Author(s):  
Jennifer Dickman Portz ◽  
J. D. Powers ◽  
M. Baldwin ◽  
David B. Bekelman ◽  
Alejandra Casillas ◽  
...  
Keyword(s):  
End Of Life ◽  
Patient Portal

Are patient portals being used to support palliative and end-of-life care?: A scoping review (Preprint)

2021 ◽  
Author(s):  
M. Pilar Ingle ◽  
Cristina Valdovinos ◽  
Kelsey L. Ford ◽  
Shou Zhou ◽  
Sheana Bull ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Scoping Review ◽  
Future Research ◽  
Patient Portal ◽  
Patient Portals ◽  
User Acceptability ◽  
National Coalition ◽  
Meta Analyses ◽  
Hospice And Palliative Care

BACKGROUND Although patient portals are widely used for health promotion, little is known about use of palliative care and end-of-life (PCEOL) portal tools available for patients and caregivers. OBJECTIVE To identify and assess user perspectives of PCEOL portal tools available to patients and caregivers described and evaluated in the literature. METHODS A scoping review of the academic literature directed by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Review (PRISMA-ScR). We searched three databases. Sources were included if they reported the development or testing of a feature, resource, tool, or intervention, focused on at least one PCEOL domain defined by the National Coalition for Hospice and Palliative Care, targeted adults with serious illness and/or caregivers, and were offered via patient portal tethered to an electronic medical record. Authors independently screened titles and abstracts (N=796) for eligibility. Full texts (N=84) sources were reviewed. Descriptions of the portal tool name, content, targeted population, and reported user acceptability for each tool were abstracted from included sources (N=19). RESULTS Nineteen articles describing 12 tools were included, addressing the following PCEOL domains: ethical/legal (N=5), physical (N=5), and psychological/psychiatric (N=2). No tools for bereavement or hospice were identified. Studies reported high acceptability of tools among users; however, few sources commented on usability among older adults. CONCLUSIONS PCEOL patient portal tools are understudied. As medical care increasingly moves towards virtual platforms, future research should investigate the usability and acceptability of PCEOL patient portals resources and evaluate their impact on health outcomes.

scholarly journals Patient Portal Use Near the End-of-Life

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 779-779
Author(s):  
Jennifer Portz ◽  
John David Powers ◽  
David Bekelman ◽  
Megan Baldwin ◽  
Alejandra Casillas ◽  
...  
Keyword(s):  
End Of Life ◽  
Linear Trend ◽  
Personal Health Information ◽  
Care Group ◽  
Future Research ◽  
P Value ◽  
Patient Portal ◽  
Care Needs ◽  
Seriously Ill Patients ◽  
Seriously Ill

Abstract Use of patient portals, personal health information websites linked to electronic health records, in seriously ill populations is unknown, as is use by caregivers. We described portal use patterns among adults with serious illness nearing end-of-life and their caregivers within Kaiser Permanente Colorado. Inclusion criteria were: 1) seriously ill patients (defined by KP’s “Care Group”), □18 years of age, who were registered for the portal, and died between 1/1/2016-6/30/2019; and 2) caregivers of these patients, □18 years of age, registered for a proxy account. Data included user characteristics and portal use metrics summarized monthly over the 12-month period prior to death. Models included an unadjusted linear trend of the days used by month using a generalized estimating equation Poisson model with a log link and an autoregressive correlation structure of order 1. We identified 6,517 seriously ill patients with portal registrations; 163 of these patients had proxy caregivers. Patient users were 77 years old, mostly frail and White, and caregivers were predominantly female. Average days of use among patients was 42.4 days and <1 day among their caregivers. Number of days used significantly increased by 0.7% per month from twelve months to one month prior to death (95% CI: 0.4%-1.0%; p-value <.0001) and peaked 3 months prior to the patient’s death. Average use was high in comparison to previous portal research and suggests that as the patient approaches death portal use increases. Future research should explore how portals may serve as indicators for identifying and addressing end-of-life care needs.

Much Ado About Fried Chicken: Abetting Aspiration or Respecting Autonomy?

2019 ◽  
Vol 28 (3) ◽  
pp. 1356-1362
Author(s):  
Laurence Tan Lean Chin ◽  
Yu Jun Lim ◽  
Wan Ling Choo
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Multidisciplinary Team ◽  
Biopsychosocial Model ◽  
Family Members ◽  
Clinical Decisions ◽  
Goals Of Care ◽  
Complex Needs ◽  
Aspiration Risk ◽  
Patient Centric

Purpose Palliative care is a philosophy of care that encompasses holistic, patient-centric care involving patients and their family members and loved ones. Palliative care patients often have complex needs. A common challenge in managing patients near their end of life is the complexity of navigating clinical decisions and finding achievable and realistic goals of care that are in line with the values and wishes of patients. This often results in differing opinions and conflicts within the multidisciplinary team. Conclusion This article describes a tool derived from the biopsychosocial model and the 4-quadrant ethical model. The authors describe the use of this tool in managing a patient who wishes to have fried chicken despite aspiration risk and how this tool was used to encourage discussions and reduce conflict and distress within the multidisciplinary team.

End-of-Life Issues for People Who Use AAC

2005 ◽  
Vol 14 (3) ◽  
pp. 15-19 ◽  
Author(s):  
Melanie Fried-Oken ◽  
Lisa Bardach
Keyword(s):  
End Of Life ◽  
Life Issues ◽  
End Of Life Issues

Dysphagia in Hospice Care: The Roles of Social Work and Speech-Language Pathologists

2014 ◽  
Vol 23 (4) ◽  
pp. 173-186 ◽  
Author(s):  
Deborah Hinson ◽  
Aaron J. Goldsmith ◽  
Joseph Murray
Keyword(s):  
Social Work ◽  
End Of Life ◽  
Case Studies ◽  
End Of Life Care ◽  
Hospice Care ◽  
Patient Communication ◽  
Life Care ◽  
Speech Language Pathologists ◽  
Four Levels

This article addresses the unique roles of social work and speech-language pathologists (SLPs) in end-of-life and hospice care settings. The four levels of hospice care are explained. Suggested social work and SLP interventions for end-of-life nutrition and approaches to patient communication are offered. Case studies are used to illustrate the specialized roles that social work and SLP have in end-of-life care settings.

Die Entwicklung eines Instruments zur «Evaluation stationärer Hospize aus der Perspektive hinterbliebener Angehöriger» (EHPA)

Pflege ◽  
2011 ◽  
Vol 24 (3) ◽  
pp. 171-182
Author(s):  
Mandy Lohe ◽  
Manja Zimmermann ◽  
Christiane Luderer ◽  
Katharina Sadowski
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Subjektive Bewertung ◽  
Ethische Probleme

Als Einrichtungen des Gesundheitswesens sind stationäre Hospize in Deutschland zur Qualitätssicherung und internen Qualitätsentwicklung verpflichtet. Die Bedeutung der Patientenzufriedenheit als einer der indirekten Indikatoren zur Beurteilung der Pflege- und Betreuungsqualität ist mittlerweile unumstritten. Eine subjektive Bewertung des Hospizes durch den Gast selbst birgt sowohl praktische als auch ethische Probleme. Eine Befragung der Angehörigen empfiehlt sich. Der vorliegende Artikel beschreibt die Entwicklung eines Instruments zur Evaluation stationärer Hospize aus der Sicht hinterbliebener Angehöriger. Mit dessen Hilfe soll die Frage, wie Angehörige die Begleitung und Pflege beurteilen, die ihnen sowie ihrem verstorbenen Familienmitglied durch das Hospiz zuteil wurde, beantwortet werden. Die Konstruktion der Fragen erfolgte auf Basis bestehender Konzepte zum Assessment der end-of-life care und einer Analyse aller identifizierten Instrumente zur Evaluation stationärer Hospize aus der Perspektive hinterbliebener Angehöriger. Die Fragebogenentwicklung umfasste neben der umfassenden Literaturrecherche die Bildung eines Itempools, die Itemauswahl, die kritische Diskussion der Fragen im Expertenkreis sowie einen standardisierten und kognitiven Pretest. Entstanden ist ein fünfdimensionaler Fragebogen, der physische, psychologische, soziale, spirituelle und versorgungsorganisatorische Aspekte der end-of-life care integriert. Das Instrument umfasst 53 Items in Form überwiegend geschlossener Fragen.

Before I Die

GeroPsych ◽  
2018 ◽  
Vol 31 (3) ◽  
pp. 151-162 ◽  
Author(s):  
Qiao Chu ◽  
Daniel Grühn ◽  
Ashley M. Holland
Keyword(s):  
End Of Life ◽  
Psychosocial Development ◽  
Time Horizon ◽  
Development Theory ◽  
Life Stages ◽  
Socioemotional Selectivity Theory ◽  
Socioemotional Selectivity ◽  
Time Horizons

Abstract. We investigated the effects of time horizon and age on the socioemotional motives underlying individual’s bucket-list goals. Participants were randomly assigned to one of three time-horizon conditions to make a bucket list: (1) an open-ended time horizon (Study 1 & 2), (2) a 6-month horizon (i.e., “Imagine you have 6 months to live”; Study 1 & 2), and (3) a 1-week horizon (Study 2). Goal motives were coded based on socioemotional selectivity theory and psychosocial development theory. Results indicated that time horizon and age produced unique effects on bucket-list goal motives. Extending past findings on people’s motives considering the end of life, the findings suggest that different time horizons and life stages trigger different motives.

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