Advance care tweeting: A mixed-methods analysis of online conversations surrounding National Healthcare Decisions Day hashtags on Twitter (Preprint)

2021 ◽  
Author(s):  
Tahleen A. Lattimer ◽  
Kelly E. Tenzek ◽  
Yotam Ophir ◽  
Suzanne S. Sullivan
Keyword(s):  
Health Care Professionals ◽  
Topic Model ◽  
Death And Dying ◽  
The United States ◽  
Good Death ◽  
Communication Tool ◽  
Cultural Perspective ◽  
National Healthcare ◽  
Advance Care Directives ◽  
Advance Care

BACKGROUND Within most Western societies, topics related to death and dying continue to be taboo, and opportunities for presence and engagement during end-of-life that could lead to a good death are avoided as a result. Several efforts have been made to help people engage in advance care planning (ACP) conversations, including completing advance care directives, so they may express their goals-of-care if they become too sick to communicate their wishes. One major effort in the United States towards encouraging such challenging discussions is the annual celebration of National Healthcare Decisions Day (NHDD). OBJECTIVE The present study explored ACP from a socio-cultural perspective, using Twitter as a communication tool. METHODS All publicly available tweets published between August 1st 2020 and July 30th 2021 (N = 9,713) were collected and analyzed using the computational, mixed-method Analysis of Topic Model Network (ANTMN) approach. RESULTS Results revealed conversations, driven primarily by laypersons (96% of tweets originated from unverified accounts) surrounded three major themes: importance and promotion, surrounding language, and finally, systemic issues. CONCLUSIONS Based on the results, we argue there is a need for awareness of what barriers people may face in engaging in ACP conversations, including systemic barriers, literacy levels, misinformation, policies, including Medicare reimbursements, and trust among health care professionals. This is incredibly important for clinicians and scholars to be aware of as we strive to re-envision ACP so that people are more comfortable engaging in ACP conversations. In terms of content of Tweets, we argue there is a chasm between the biomedical and biopsychosocial elements of ACP, including patient narratives. If used properly, Twitter conversations and NHDD hashtags could be harnessed to serve as a connecting point between organizations, physicians, patients and family members, to lay the groundwork for the trajectory towards a good death.

Analyzing Zoombombing as a new communication tool of cyberhate in the COVID-19 era

2021 ◽  
Vol ahead-of-print (ahead-of-print) ◽  
Author(s):  
Claire Seungeun Lee
Keyword(s):  
News Media ◽  
The United States ◽  
Communication Tool ◽  
Cultural Perspective ◽  
Media Content Analysis ◽  
Content Type ◽  
News Reporting ◽  
Identity Recognition ◽  
Working Environments ◽  
Jewish Americans

PurposeThe aims of this paper are to explore the rise of cyberhate on the Zoom video conferencing platform at the outset of the coronavirus disease 2019 (COVID-19) pandemic and to examine victimized cases of Zoombombing where it was used as a cyberhate tool. The COVID-19 pandemic has not only impacted our lives and modes of working and studying, but also created new environments for cybercriminals to engage in cybercrime, cyberhate and hacking by exploiting tools such as Zoom. This new phenomenon called “Zoombombing” was first reported in mid-March 2020, when the social distancing and stay-at-home policies in the United States were nationally introduced.Design/methodology/approachThis research conducted a news media content analysis on cases of Zoombombing. To conduct this analysis empirically, a dataset with all of the reported Zoombombing cases from March to April 2020 was created. Google Trends, news media and tweets were used to analyze Zoombombing as a form of cyberhate, particularly digital racism.FindingsThe results reveal prevalent Zoom-mediated racism toward Asian Americans, African Americans and Jewish Americans. This study understands Zoombombing from a sociopolitical/cultural perspective through news reporting of victimized cases and explores various ways that Zoombombing shapes, mediates, transforms and escalates racism.Originality/valueThis study is one of the very first studies to analyze Zoombombing in a way that builds upon an emerging body of literature on cyberhate. This paper considers Zoom as a space where curious young people, cybercriminals, extremists and hackers impose their ideologies and beliefs upon newly established online learning and working environments and engage in a struggle for identity recognition in the midst of increasingly accessible vulnerable software and cyberspace.

Transformative Advance Care Planning: The Honoring Choices Minnesota Experience

2013 ◽  
Vol 19 (4) ◽  
pp. 200-204 ◽  
Author(s):  
Barbara Greene
Keyword(s):  
United States ◽  
Health Care ◽  
End Of Life ◽  
Advance Care Planning ◽  
Medical Condition ◽  
Death And Dying ◽  
The United States ◽  
Care Planning ◽  
Advance Care ◽  
Voluntary Community

In the United States, discussing end-of-life wishes and preferences has been taboo ever since death and dying moved from a stage of life to a medical condition. This article describes the transformative nature of a Minnesota health care initiative, Honoring Choices Minnesota (HCM). As the world’s largest nongovernmental, voluntary community-centered initiative, HCM is changing the culture around speaking of death and dying, one conversation at a time.

scholarly journals The Feasibility and Effectiveness of Web-Based Advance Care Planning Programs: Scoping Review

10.2196/15578 ◽  
2020 ◽  
Vol 22 (3) ◽  
pp. e15578 ◽  
Author(s):  
Doris van der Smissen ◽  
Anouk Overbeek ◽  
Sandra van Dulmen ◽  
Lisette van Gemert-Pijnen ◽  
Agnes van der Heide ◽  
...  
Keyword(s):  
United States ◽  
Health Care ◽  
Advance Care Planning ◽  
Health Care Professionals ◽  
The United States ◽  
Care Planning ◽  
Web Based ◽  
Future Care ◽  
Advance Care ◽  
Study Designs

Background Advance care planning (ACP) is a process with the overall aim to enhance care in concordance with patients’ preferences. Key elements of ACP are to enable persons to define goals and preferences for future medical treatment and care, to discuss these with family and health care professionals, and to document and review these if appropriate. ACP is usually conducted through personal conversations between a health care professional, a patient, and—if appropriate—family members. Although Web-based ACP programs have the potential to support patients in ACP, their effectiveness is unknown. Objective This study aimed to assess the feasibility and effectiveness of Web-based, interactive, and person-centered ACP programs. Methods We systematically searched for quantitative and qualitative studies evaluating Web-based, interactive, and person-centered ACP programs in seven databases including EMBASE, Web of Science, Cochrane Central and Google Scholar. Data on the characteristics of the ACP programs’ content (using a predefined list of 10 key elements of ACP), feasibility, and effectiveness were extracted using a predesigned form. Results Of 3434 titles and abstracts, 27 studies met the inclusion criteria, evaluating 11 Web-based ACP programs—10 were developed in the United States and one in Ireland. Studied populations ranged from healthy adults to patients with serious conditions. Programs typically contained the exploration of goals and values (8 programs), exploration of preferences for treatment and care (11 programs), guidance for communication about these preferences with health care professionals or relatives (10 programs), and the possibility to generate a document in which preferences can be recorded (8 programs). Reportedly, participants were satisfied with the ACP programs (11/11 studies), considering them as easy to use (8/8 studies) and not burdensome (7/8 studies). Designs of 13 studies allowed evaluating the effectiveness of five programs. They showed that ACP programs significantly increased ACP knowledge (8/8 studies), improved communication between patients and their relatives or health care professionals (6/6 studies), increased ACP documentation (6/6 studies), and improved concordance between care as preferred by the patients and the decisions of clinicians and health care representatives (2/3 studies). Conclusions Web-based, interactive, and person-centered ACP programs were mainly developed and evaluated in the United States. They contained the key elements of ACP, such as discussing and documenting goals and preferences for future care. As participants considered programs as easy to use and not burdensome, they appeared to be feasible. Among the 13 studies that measured the effectiveness of programs, improvement in ACP knowledge, communication, and documentation was reported. The concordance between preferred and received care is yet understudied. Studies with high-quality study designs in different health care settings are warranted to further establish the feasibility and effectiveness of Web-based ACP programs.

Narrative medicine: A useful approach for difficult conversations.

2019 ◽  
Vol 37 (31_suppl) ◽  
pp. 6-6
Author(s):  
Leslie J. Hinyard ◽  
Cara L. Wallace ◽  
April Trees ◽  
Jennifer E. Ohs
Keyword(s):  
End Of Life ◽  
Health Care Professionals ◽  
Self Efficacy ◽  
Death And Dying ◽  
Narrative Medicine ◽  
Personal Story ◽  
Difficult Conversations ◽  
Advance Care ◽  
Advance Care Directive ◽  
Practice Methods

6 Background: Narrative medicine (NM) is acknowledged as an effective approach for valuing patient and provider experiences. The NM approach requires developing narrative competence to “recognize, absorb, interpret, and honor” the stories of self and other (Charon, 2010). Given the difficulties providers face engaging in end-of-life (EOL) and advance care planning (ACP) conversations, this study reports the results of a NM workshop to 1) develop skills in attending and responding to the stories of others as part of ACP conversations and 2) reflect on their own stories of loss in relation to their professional practice. Methods: 80 health care professionals participated in a workshop on NM principles for end-of-life care and completed both pre- and post-workshop surveys. Workshop activities included a close reading on a professional’s story of personal loss and a reflective writing exercise sharing one’s own personal story of loss. Small groups debriefed after each exercise. 2 participants were current students and were dropped from analysis, for a final analytic sample of 78. Participants completed surveys at baseline and at the conclusion of the workshop. Surveys included questions on participant demographics, confidence for EOL conversations, and the ACP Self Efficacy scale. Descriptive statistics were calculated for sample demographics and post-workshop evaluation questions. A paired sample t-test was used to compare ACP Self Efficacy scores pre- and post-workshop. Confidence for EOL conversations was compared pre- and post-workshop using Kendall’s tau-b. Results: The mean age of the sample was 46.6 years (SD 13.1), 94% were female, and 82% were White. Social workers represented 84.6% of the sample. 53% of the sample reported having some type of advance care directive for themselves. Self-efficacy for engaging in ACP conversations increased from pre- to post-workshop (p < 0.0001) and there was a statistically significant improvement in confidence discussing death and dying from pre- to post-workshop (p = 0.004). Conclusions: NM competencies improve self-efficacy and confidence for engaging in ACP and EOL conversations. Providers find the NM approach to be a useful framework for engaging in difficult conversations about end-of-life.

End-of-Life Issues in Intensive Care Units

2020 ◽  
Author(s):  
Victoria Metaxa
Keyword(s):  
Palliative Care ◽  
Critical Care ◽  
End Of Life ◽  
Death And Dying ◽  
Disease Process ◽  
Life Issues ◽  
Advance Care Directives ◽  
Advance Care ◽  
End Of Life Issues ◽  
Potential Improvement

AbstractCritical care clinicians strive to reverse the disease process and are frequently faced with difficult end-of-life (EoL) situations, which include transitions from curative to palliative care, avoidance of disproportionate care, withholding or withdrawing therapy, responding to advance treatment directives, as well as requests for assistance in dying. This article presents a summary of the most common issues encountered by intensivists caring for patients around the end of their life. Topics explored are the practices around limitations of life-sustaining treatment, with specific mention to the thorny subject of assisted dying and euthanasia, as well as the difficulties encountered regarding the adoption of advance care directives in clinical practice and the importance of integrating palliative care in the everyday practice of critical-care physicians. The aim of this article is to enhance understanding around the complexity of EoL decisions, highlight the intricate cultural, religious, and social dimensions around death and dying, and identify areas of potential improvement for individual practice.

Is Death “The Great Equalizer”? The Social Stratification of Death Quality in the United States

2015 ◽  
Vol 663 (1) ◽  
pp. 331-354 ◽  
Author(s):  
Deborah Carr
Keyword(s):  
End Of Life ◽  
Social Stratification ◽  
Health Care Policy ◽  
The United States ◽  
Good Death ◽  
Data Sets ◽  
Policy And Practice ◽  
Life Study ◽  
Advance Care ◽  
Dying At Home

Socioeconomic status (SES) gradients in mortality risk are well documented, although less is known about whether the quality of older adults’ dying experiences is stratified by SES. I focus on six core components of a “good death”: pain and symptom management, acceptance, medical care that is concordant with one’s preferences, dying at home, emotional preparation, and formal preparations for end-of-life care. Analyses are based on four data sets spanning the 1980s through 2010s, a period marked by rising economic inequalities: Changing Lives of Older Couples (1986–1994), Wisconsin Longitudinal Study (1993–2010), New Jersey End of Life study (2005–2007), and Wisconsin Study of Families and Loss (2010–2014). I find evidence of SES disparities in two outcomes only: pain and advance care planning (ACP), widely considered an important step toward a “good death.” Implications for health care policy and practice, against the backdrop of the Affordable Care Act implementation, are discussed.

scholarly journals Ars moriendi as social reality : articulation of the good death in the United States

2021 ◽  
Author(s):  
◽  
Douglas Valentine
Keyword(s):  
Death And Dying ◽  
Social Institutions ◽  
The United States ◽  
Religious Studies ◽  
Good Death ◽  
Death Process ◽  
Ritual Studies ◽  
Psychological Healing ◽  
Ars Moriendi ◽  
Responding To Change

Death and dying are often theorized as micro-level processes, focusing on the experience of the death process from the perspective of the dying, or in the context of grief and psychological healing on the part of the bereaved. While these academic analyses have merit, their analytic utility is limited. Death, dying, bereavement, and memorial are social processes that require multidisciplinary investigation. Utilizing sociological, religious studies, and ritual studies methodologies, this dissertation explores ars moriendi, or the good death, as a process enmeshed within the macro-structural forces of political, religious, economic, and social institutions. Through these discrete case studies, the dying and the bereaved are recentered as active agents driving and responding to change within the contemporary American death industry.

scholarly journals Comparative Analysis of the Views of Oncologic Subspecialists and Palliative/Supportive Care Physicians Regarding Advanced Care Planning and End-of-Life Care

2018 ◽  
Vol 35 (10) ◽  
pp. 1287-1291 ◽  
Author(s):  
Phillip M. Pifer ◽  
Mark K. Farrugia ◽  
Malcolm D. Mattes
Keyword(s):  
Supportive Care ◽  
End Of Life ◽  
Health Care Professionals ◽  
End Of Life Care ◽  
Ordinal Data ◽  
The United States ◽  
Care Planning ◽  
Life Care ◽  
Incurable Cancer ◽  
Advance Care

Background: Early palliative/supportive care (PSC) consultation and advance care planning (ACP) improve outcomes for patients with incurable cancer. However, PSC is underutilized in the United States. Objective: To examine philosophical differences among PSC, radiation oncology (RO), and medical oncology (MO) physicians in order to understand barriers to early PSC referral. Design: An electronic survey collected views of a nationwide cohort of health-care professionals regarding ACP and end-of-life care. Setting/Participants/Measurements: A subgroup analysis compared the responses from all 51 PSC, 178 RO, and 81 MO physician participants (12% response rate), using Pearson χ2 and Mann-Whitney U tests for categorical and ordinal data, respectively. Results: More statistically significant differences were observed between RO-PSC (12 questions) and MO-PSC (12 questions) than RO-MO (4 questions). Both RO and MO were more likely than PSC physicians to believe doctors adequately care for emotional ( P < .001) and physical ( P < .001) needs of patients with an incurable illness. Both RO and MO were also less likely to believe that PSC physicians were helpful at addressing these needs ( P = .002 and <.001, respectively) or that patients’ awareness of their life expectancy leads to better medical ( P = .007 and .002, respectively) and personal ( P = .001 for each) decisions. Palliative/supportive care physicians felt that doctors are generally less successful at explaining/clarifying advanced life-sustaining treatments than RO ( P < .001) or MO ( P = .004). MO favored later initiation of ACP than either RO ( P = .006) or PSC physicians ( P = .004). Conclusions: Differences in perception of appropriate end-of-life care exist between oncologists and PSC physicians, suggesting a need for improved education and communication between these groups.

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