{"id":4004,"date":"2024-09-17T10:00:17","date_gmt":"2024-09-17T09:00:17","guid":{"rendered":"https:\/\/blogs.bmj.com\/medical-humanities\/?p=4004"},"modified":"2024-09-06T10:01:38","modified_gmt":"2024-09-06T09:01:38","slug":"who-is-speaking-for-bruce-willis-when-third-party-narratives-encroach-on-patient-rights","status":"publish","type":"post","link":"https:\/\/blogs.bmj.com\/medical-humanities\/2024\/09\/17\/who-is-speaking-for-bruce-willis-when-third-party-narratives-encroach-on-patient-rights\/","title":{"rendered":"Who is Speaking for Bruce Willis? When Third Party Narratives Encroach on Patient Rights"},"content":{"rendered":"

Blog by Arlene Jackson<\/strong><\/p>\n

\"Jackson,<\/p>\n

 <\/p>\n

The family of actor Bruce Willis first shared his diagnosis of aphasia and frontotemporal degeneration (FTD) via social media in 2022, stating: \u201cBruce has been experiencing some health issues and has recently been diagnosed with aphasia, which is impacting his cognitive abilities. As a result of this and with much consideration Bruce is stepping away from the career that has meant so much to him.\u201d1<\/sup><\/a>\u00a0Despite their assertion on Mr. Willis\u2019s behalf that he has retired from the media\u2019s gaze, the family continue to utilise social media to, \u201cshare updates and glimpses of the action star.\u201d2<\/sup><\/a> It is unclear whether Mr. Willis has given his consent for any of this publicity. Shouldn\u2019t the chronicling of Willis\u2019s illness on social media by third parties provoke ethical considerations? For example, relevant stakeholders, including the FTD community, have not discussed the issue from the perspective of informed consent. This absence should concern anyone who cares about patient rights.<\/p>\n

In Coping with Illness Digitally<\/em>, Stephen Rains offers seven potential benefits users may gain when employing social media as a mode of communication in response to illness: \u201canonymity, availability, control, diversity, documentation, reach and visibility.\u201d3<\/sup><\/a> If we consider Mr. Willis\u2019s position by examining two of these benefits\u2014anonymity and control\u2014he has neither. First, as an internationally recognised actor, Mr. Willis relinquished his anonymity a long time ago. Second, control as a benefit relates to the sharing of information by an individual. Yet Mr. Willis is promoted through social media platforms curated both individually and collectively by his wife, Emma Heming Willis, his former wife, Demi Moore, and his three adult daughters.<\/p>\n

The family members present themselves as enjoying a close bond with Mr. Willis, which may imply that they have secured his consent, perhaps nonverbally. However, when Heming Willis spoke of Willis\u2019s condition on The Today Show <\/em>in November 2023, she confirmed that it is \u201chard to know\u201d4<\/sup><\/a> if he has cognitive capacity.\u00a0Earlier accounts of Mr. Willis\u2019s cognitive decline, reported by his former colleagues as early as 2018, are less opaque. Director Jessie V. Johnston voiced concern for the actor\u2019s welfare on set, recalling, \u201cWillis questioned where he was: [saying] I know why you\u2019re here, and I know why you\u2019re here, but why am I here?\u201d5<\/sup><\/a><\/p>\n

To date, the Willis family, mainstream media, and scholars in the field of neurodegenerative diseases have represented Mr. Willis\u2019s exposure within the field of public health as an \u201copportunity for the public to learn more about what aphasia is, and\u2014maybe even more importantly\u2014what it isn\u2019t.\u201d6<\/sup><\/a>\u00a0However, it is again unclear if Mr. Willis has provided his informed consent to be the public face of FTD. Instead, the spotlight is given to his wife and daughters, who are praised as \u201ccourageous\u201d7<\/sup><\/a> for sharing the details of his diagnosis with the public.<\/p>\n

Normalising a lack of explicit consent in this context carries implications, including the suppression of Mr. Willis\u2019s first-person narrative. Videos and photographs posted to the Willis family\u2019s individual accounts are accompanied by a commentary on how\u00a0they<\/em>\u00a0feel about his condition. It could be argued that Willis\u2019s family engages in a victim\/caregiver dynamic. Sociology professor Arthur W. Frank writes about illness experience, narrative, and ethics of care, and he describes this relationship dynamic as \u201cthe dominant cultural conception of illness [\u2026] the ill person as \u2018victim of\u2019 disease and then recipient of care.\u201d8<\/sup><\/a> Heming Willis\u2019s book documenting her experience as a caregiver may give support to this view.9<\/sup><\/a> It may be further argued that there is a lack of dignity afforded to Mr Willis. After a video recorded on his sixty-eighth birthday was shared by Demi Moore on her Instagram page, her followers expressed concerns for Mr. Willis, questioning whether the family ought to have shared such images. Rather than examine such concerns, the media responded by facilitating sentimentalist ideas about illness and disability: \u201cwhat they shared was not just a video, but it was an unforgettable moment, next to a person they admire, love, and care for.\u201d10<\/sup><\/a><\/p>\n

For many people living with illness\/disability, social media has proven empowering, connecting them with a wide audience to both offer and gain information and support. Nevertheless, as Professor of Practice in Global Data Analytics, Max Roser, writes, \u201cDespite their brief history, computers and AI have fundamentally changed what we see, what we know, and what we do. Little is as important for the world\u2019s future and our own lives as how this history continues.\u201d11<\/sup><\/a> His cautionary tone implies that regulation of the internet trails the technology\u2019s development. Furthermore, where consent is ambiguous, public discourse and scholarship on the impact of an unregulated internet on individuals living with illness\/disability remains scarce.<\/p>\n

I invite further discussion of the issue presented here. The humanities aim to critically\u00a0\u201canalyse the drivers and implications of a changing world\u201d12<\/sup><\/a> and to do so through a consideration of our responsibilities to others and to the self. The management of Mr. Willis\u2019s public profile by his family, particularly with reference to his illness, certainly provokes such reflection. In the meantime, we may suppose that his family is acting with intentions that are faithful to his desires. Nonetheless, in an age when the majority of the population carries an internet-enabled phone in their pocket and users of social media are invited to scroll through the personal lives of others, holding faith that people will aways behave in an ethical manner is insufficient. Rather, we should consider the impact of social media exposure on any individual who is unable to express consent due to impairment and who, like Mr. Willis, may be at risk of being cast into a role they cannot decline.<\/p>\n

 <\/p>\n

Arlene Jackson is a postgraduate researcher\u00a0at Manchester Metropolitan University, where she explores the meaning and value of fiction in audio format for individuals living with sensory impairments. As a former nurse who presently lives with chronic illness, Arlene utilises her perspective from the other side of the medical fence to support subjective illness narratives. She may be contacted here<\/a> and welcomes discussion on this issue via the comments feature available below.<\/em><\/p>\n

 <\/p>\n

References<\/strong><\/p>\n

[1]<\/a> Demi G. Moore, (@demimoore), \u201cTo Bruce\u2019s amazing supporters, as a family we wanted to share that our beloved Bruce has been experiencing some health issues and has recently been diagnosed with aphasia,\u201d Instagram, March 30, 2022, https:\/\/www.instagram.com\/p\/Cbu-mD7LMPg\/<\/a>.<\/p>\n

[2]<\/a> Lara Spencer, \u201cBruce Willis\u2019 Wife Opens Up About \u2018Desperately\u2019 Needing Support After His Dementia Diagnosis,\u201d ABC News<\/em>, May 8, 2024, https:\/\/abc11.com\/post\/bruce-willis-wife-opens-up-about-desperately-needing-support-after-dementia-diagnosis\/14784503\/<\/a>.<\/p>\n

[3]<\/a> Stephen A. Rains,\u00a0Coping with Illness Gigitally<\/em> (MIT Press, 2018), 15.<\/p>\n

[4]<\/a> Martin Holmes, \u201cBruce Willis Update as Demi Moore Shares Touching New Photo,\u201d TV Insider<\/em>, March 20, 2024, https:\/\/www.tvinsider.com\/1127550\/bruce-willis-health-update-dementia-demi-moore-photo\/<\/a><\/p>\n

[5]<\/a> Meg James and Amy Kaufman, \u201cConcerns about Bruce Willis\u2019 Declining Cognitive State Swirled Around Sets in Recent Years,\u201d Los Angeles Times<\/em>, March 30, 2022, https:\/\/www.latimes.com\/entertainment-arts\/movies\/story\/2022-03-30\/bruce-willis-aphasia-memory-loss-cognitive-disorder<\/a>.<\/p>\n

[6]<\/a> Robert S. Hurley et al., \u201cThe Media Coverage of Bruce Willis Reveals Unfamiliarity with Frontotemporal Degeneration,\u201d\u00a0Innovation in Aging<\/em>\u00a07, no. 9 (2023): igad125, https:\/\/doi.org\/10.1093\/geroni\/igad125<\/a>.<\/p>\n

[7]<\/a> Hurley et al., “The Media Coverage of Bruce Willis.\u201d<\/p>\n

[8]<\/a> Arthur W. Frank,\u00a0The Wounded Storyteller: Body, illness & Ethics<\/em>, 2nd ed. (University of Chicago Press, 2013) 5.<\/p>\n

[9]<\/a> Sian Cain, \u201cBruce Willis\u2019 Wife Writing Book About Being His Caregiver After Dementia Diagnosis,\u201d The Guardian<\/em>, February 5, 2024, https:\/\/www.theguardian.com\/film\/2024\/feb\/06\/bruce-willis-wife-emma-heming-new-book-dementia-diagnosis-caregiving-release-information<\/a>.<\/p>\n

[10]<\/a> Isabel Carrasco, \u201cBruce Willis Mocked on Social Media Proves People Can Be Truly Heartless,\u201d Cultura Colectiva<\/em>, March 21, 2023, https:\/\/culturacolectiva.com\/en\/lifestyle\/bruce-willis-mocked-on-social\/<\/a>.<\/p>\n

[11]<\/a> Max Roser, \u201cThe Brief History of Artificial Intelligence: The World Has Changed Fast\u2014What Might Be Next?\u201d\u00a0Our World in Data<\/em>, December 6, 2022, https:\/\/ourworldindata.org\/brief-history-of-ai<\/a>.<\/p>\n

[12]<\/a> Qualified for the Future: Quantifying Demand for Arts, Humanities and Social Science Skills<\/em> (British Academy, 2020), https:\/\/www.thebritishacademy.ac.uk\/documents\/1888\/Qualified-for-the-Future-Quantifying-demand-for-arts-humanities-social-science-skills.pdf<\/a>.<\/p>\n","protected":false},"excerpt":{"rendered":"

Blog by Arlene Jackson   The family of actor Bruce Willis first shared his diagnosis of aphasia and frontotemporal degeneration (FTD) via social media in 2022, stating: \u201cBruce has been experiencing some health issues and has recently been diagnosed with aphasia, which is impacting his cognitive abilities. As a result of this and with much […]<\/p>\n

Read More…<\/a><\/p>\n","protected":false},"author":345,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[15070],"tags":[15068],"class_list":["post-4004","post","type-post","status-publish","format-standard","hentry","category-blog","tag-blog"],"yoast_head":"\nWho is Speaking for Bruce Willis? When Third Party Narratives Encroach on Patient Rights - Medical Humanities<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/blogs.bmj.com\/medical-humanities\/?p=4004\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Who is Speaking for Bruce Willis? 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