YouTube as an archive for the end of life

Team Members

• Anna Couturier
• Michele Invernizzi
• Carlos Jimenez
• Natalia Sanchez-Querubin
• Giovanni Profeta
• Nadine Werner

Introduction and questions: end of life stories.

Illness stories are stories told by people who are sick, including those who are facing the end of their lives. Doctors and care professionals encourage and guide these particular patients (and storytellers) in articulating and communicating their experiences. The process, it is argued, can help terminal patients develop better coping strategies. A selection of these illness stories reaches audiences as books. A recent case is When Breath Becomes Air, a book written by Paul Kalanithi, a neurosurgeon with terminal brain cancer. Also, the experiences of terminal patients are compiled into lists and articles, which tend to emphasize the insights offered by people facing death. An example is the article, Top five Regrets of the Dying, based on a nurse’s records of the most common regrets expressed by dying patients. Amongst the top is: 'I wish I hadn't worked so hard'. As the above mentioned examples illustrate, terminal illness stories have structures and media formats, which have continued to evolve with social media. This project takes as case study YouTube. We ask, what stories and what networks is the-end-of-life experience articulating in YouTube? What moments do people choose to document and share? And, which do best in the medium? What new styles and formats for storytelling emerge? And also, what are the implications, benefits and risks of these evolving collection of media for how people perceive and engage with death?

Methodology: three modes of engagement

YouTube is a complex video-hosting and sharing platform. Content creators range from mayor music and entertainment companies to food and fashions vloggers to independent musicians and influencers who update followers about their personal lives. YouTube is also a repository for old television shows, clips, viral content, and fragments from interviews. As a user one can access YouTube content in at least three ways. First, one uses YouTube ’s search engine and queries for keywords. The outcome is a list of ranked videos. Second, one follows a video channel and is notified when new content is uploaded. Third, videos are recommended to users by the platform. The information landscape organized around the end of life experience changes depending on how one engages with the platform, namely, illness can be queried, followed, and recommended. The analysis that followers repurposes each these modes of engagement in order to study how the end of life experience is, indeed, communicated, ordered, and found on YouTube.

Analysis and results

The query: Ordinary patients mediated.

We employ the tool, ‘YouTube Explorer’, to query YouTube via the API. The term is [terminal illness my story] and the tool is set to return 500 videos ranked according to ‘relevance’, along with their metadata. The latter includes url, title, description, category, author, date, and engagement. The analysis of the aforementioned dataset is underlined by the question: What type of content are patients and their families likely to find when querying YouTube? Based on the metadata of ‘Category’, which is determined by the person who uploads the video, we observe that the majority of the content corresponds to ‘People and Blogs’, ‘Nonprofits and Activism’, and ‘Entertainment’ (see figure 1), with the latter generating the most number of views.

While interesting, the self-generated categories (visualized above) are not particularly illuminating vis a vis the goals of the project. For this reason, an additional seven categories are generated by manually coding the 500 videos. Under the new category of Testimonial are videos in which patients and their family members share their end-of-life experiences, including reflections, treatment, and videos in which they offers insights and advice to viewers. An example is the video titled, “My philosophy for a happy life |Sam Berns” by TEDxMidAtlantic. At the age of two, Sam Berns was diagnosed with Progeria, a rare and rapid aging disease. In the video, Sam shares with the TEDx audience his life philosophy and how he deals with the limitations of his condition. A second category is Heartwarming and Inspiring Moments. Videos under this category include moving scenes recorded at hospitals, updates by charity projects, art works, and snippets into a patient’s life. An example is “Clouds by Zach Sobiech”, a music video produced for a song recorded by Zach Sobiech who was diagnosed with terminal bone cancer. The song can be purchased on ITunes; the profits donated into his foundation.

Figure 2. Dataset visualized according to new categories and views. The majority of the content associated with the query [terminal illness my story] falls into the categories ‘testimonials and wisdom’ and ‘heartwarming and inspiring moments’.

Under the category, End of Life Care and Education, one finds videos that offer advice about coping with and managing terminal illness, uploaded by organizations, care providers, independent entrepreneurs, and charities. An example of this type of video is “Therapy for Couples and Families Coping with Cancer or Other Chronic Illnesses” published by The American Association for Marriage and Family Therapy. The category of Cures and Miracles, includes videos such as “Girl Suffering Painful Illness Says After Falling From Tree Jesus Cured Her”. Under Campaigns are video content such as “Claire Wineland is the founder of Claire's Place Foundation, which supports families living with cystic fibrosis” published by ‘PopSugar’. Claire Wineland was born in 1997 with cystic fibrosis, and now works as an activist and motivational speaker. In order to map the information diet created by querying YouTube, the 500 videos with their associated categories are visualized in a continuous line (see Figure 3). On the graph each of the 500 ‘dots’ stands in for a video. The order of the ranking is kept, the color represents the type of content, and the circumference, the number of views. The visualization it is possible to appreciate how the top ranking videos (based on relevance) are mostly campaigns and testimonials.

Figure 3. A patient 'query diet'. The top 500 videos for the query [terminal illness my story] are ranked according to relevance. The color represents the type of content, and the circumference, the number of views. The visualization it is possible to appreciate how the top ranking videos (based on relevance) are mostly campaigns and testimonials.

We further characterised each of the new categories, and thus the resulting ‘query media diet’, by capturing the descriptions from each of the videos in a category and creating word clouds. This exercise reveals both emerging themes as well as type of media organizations. For example, content produced by Fox News in relation to terminal illness tends to ranked high on YouTube, especially in the categories of Heartwarming Moments (Figure 4, orange wordcloud) and Testimonials (Figure 4, green wordcloud) and Miracles and Cures (Figure 4, purple wordcloud)

Figure 4. Word clouds per category (selection). Heartwarming Moments (orange wordcloud) and Testimonials (green wordcloud) and Miracles and Cures (purple wordcloud)

The channel: managing audiences as terminal patients

A YouTube channel is a collection of videos and playlists created and/or uploaded by a user. Channels also serve as profiles or homepages and thus can be customized. For example, one may edit an ‘About’ section and add headers and backgrounds. Likewise channels have community sections, and on the back-end, they enable users to track the engagement metrics associated to the videos they post and the comments they received. Potentially, YouTube channels also can be monetized. In the second part of this project, we take as object Youtube channels ran by terminal cancer patients and as case study, the channels, SoFia and PeeWee Toms. These channels, we suggest, sustain forms of public illness storytelling that develops through content formats made famous by YouTube, including makeup tutorials, lifestyle vlogs, and video-diary entries. Also, and perhaps most interestingly, these cancer vloggers are engaging in particular forms of audience management. Here we ask, how is terminal illness told through the YouTube channel? In which ways are patient/vloggers interacting with their audiences? And, taking into account that YouTube channels are collections of videos, which moments are document and share in relation to terminal illness? Which generate the most engagement?

Two vlogger, two styles

Sophia Gall (‘SoFia’) is an Australian teenager. Her channel contains 84 videos, counts with 155.033 followers and has generated, at least until the moment in which this project was conducted, more than 8,000,000 views (See figure 5). On YouTube, Sofia’s illness story begins in media res. In the three first videos Sofia, respectively, offers a baking tutorial, shares fashion advice, and performs with a friend the so-called ‘whisper challenge’. It is in the fourth video that, we, the viewers, first learn about Sofia’s condition: she suffers from a rare form of osteosarcoma and has already finished a round of chemotherapy. To continue her treatment Sofia will travel to America in order to receive proton therapy for a period of three months. During this time her vlogging will adopt a style characteristic of travel vloggers, that is, she brings her viewers ‘along for the ride’. She shares packing tips and the details of flying first class. She jokes about her love for makeup, as as she explains, “she has no eyebrows”. The following videos are shopping and ‘clothing hauls’, trips to Starbucks, a visit to Disney World, and to a lesser degree, they document the time spent at hospital. Her attitude and tone are ‘bubbly’ and very positive and illness appears only in the background. For example, it is only ‘between the lines’ that we learned that Sofia is using a wheelchair during her trip to Disney.

The second phase of her channel, illness takes the forefront by way of popular demand. On a video titled ‘My cancer story’ Sofia speaks about the many request she has received to speak about her illness. Consequently, what follows in an account of events extending a year into the past, including, Sofia’s diagnosis, the hardship of chemotherapy, losing her appetite, having to wear a feeding tube, and losing her hair. Other videos in this second phase include: ‘Day in the life of a cancer patient’, ‘A day in the proton is like’, ‘Living life with cancer’, ‘The good and the bad’, ‘Normal people vs people with cancer’, ‘Winter outfits ideas’ and the joyful, ‘I’m cancer free’. After announcing to her viewers that she is, indeed, now cancer free, begins a third phase in Sofia’s channel. She uses her channel to educate people about osteosarcoma and collaborates with other young cancer vloggers to raise awareness. She also reflects about her life as a former patient. For example, we see video montages composed of old photos taken at the hospital, artworks she had made, and poems. We also learn that Sofia’s positive attitude in the face of adversity has captured not only the attention of YouTube users, but also of the traditional media. For example, she proudly tells her viewers that she has been interviewed by a local magazine.

A fourth phase in the channel is is kick-started by Sofia’s relapse. She updates her viewers: a scan shows dark spots on her lungs. When the video is posted neither Sofia or her viewers know what the results will reveal. It is only a couple of weeks later that Sofia posts a video and informs her viewers that her cancer has returned and spread. For the first time we see Sophia clearly devastated, in front of the camera. She continues to vlogs from the hospital, where she is already receiving treatment. During this time she speaks about the side effects, being ‘high’ on morphine, experiencing excruciating pain, and the dreaded return of the feeding tube. She also shares with the audience how shocked she was by the news of her cancer returning and how heartbroken she is about having to miss a much anticipated school trip to Thailand. She hopes that soon she can return to posting “happy upbeat content”. During period Sofia will vlogs from the hospital and posts makeup and clothes ‘haul’, as well as cancer updates. Videos include, for example, “Does chemo hurt?, “Q&A Side effects”, “A day in the life of a cancer patient” and finally, the announcement of the last round of radiation and the anticipation of what the scans will, indeed, reveal.

The last phase of the channel Sofia begins when shares with her viewers that she is now a terminal patient and that she will stop treatment. The chemotherapy has not worked. This particular video went ‘viral’ and was reported by different news media. In the Sofia is clearly upset, cried on camera, and needs to stop and restart the video. She reasures her audiences that she will try to enjoy her ‘life as much as she can’. Sofia’s family organises a multi-city trips including Paris, London, and New York. Sofia ‘brings her viewers along’. It is only on the last video of the series that we learn that Sofia is too tired and can not longer enjoy sightseeing. In the videos that follow (more infrequent now) we learned that Sophia has become bedridden and has stopped going to school. She has lost movement in her leg and is experiencing excruciating pain. After months of not posting, Sofia uploads a video in which she speaks about the constant requests and messages that she receives. While many express support, many also ask her to update her channel and ask she is not posting more often. Others messages amount to bullying and ‘hate mail’. She is, for example, accused of ‘wanting fame and money’ and even of faking her condition. As a response, Sofia tells her viewers that remaining positive has become a struggle. She sleeps most of the day and wakes up screaming in pain at night. In short, she says, there is nothing much to vlog about. In her final videos Sofia is in bed and her mom records. She has lost a significant amount of weight. We see her mother handing Sofia her Shorty Award 2017, she has won in the category of health and wellness social media influencer. Shortly afterwards, Sofia’s family announced her death on her Instagram account. She past away in 2017, at the age of 16.

The second vlogger is Daniel Toms (Pewee Toms). Daniel has been diagnosed with a rare type of cancer and as with Sofia, we, the viewers, arrive to the illness story in media res. Namely, Dan’s Youtube channel continues the storytelling he has developed already on his website, the channel is, however, born out of his frustration with the medical establishment. Because his cancer is rare, he argues, there is not a lot of information and support available. He believes that vlogging will help him quickly collect new information, connect with people who have similar cancers, raise awareness and share what he learns with others. Daniel also mention that most cancer vlogger are women — he mentions that Sofia has been one his inspirations— and suggests that his channel can offer an male perspective. Daniel reassures his viewers that while he will be speaking about cancer, he also intends to “be funny”. His goal include posting a video everyday, “making good content”, creating a community, and gaining viewers. The popularity of the channel is, at the beginning of the storytelling, linked to Daniels potential survival.

In the first set of videos Daniel describes the goals of his channel and shares with his new viewers his illness story and the issues that have motivated him to vlog. Included are videos by the title of: “Doctors lie? I feel like i was lied to” and “What is cancer?” He also vlogs about a recent examination in which the doctor talked about his diagnosis and potential return of his cancer in front of him, either assuming he would not be able to understand them or assuming he was sleeping. Daniel follows to document his experience with cannabis, shares updates about an upcoming surgery, answers Q&A, shares tips for growing YouTube viewership, and the ambitious plans that he has for the channel including interviewing other patients. After a couple of days Daniel posts a video titled, ‘Update — I’m broken’. In it we learned that his cancer has spread and that his condition has worsened. Subsequent video updates include: ‘My Cancer Update 08-02-2018 - The Diagnosis - The Worst Realised’ . We follow Daniel and in and out of the hospital. He shows his scars and we learned about financial issues, medication, and struggles with body image. Shortly after, we later learn that Daniel’s cancer is terminal. While visible devastated, in the video he also affirms that this is “not about the end of life but about the continuation on life”.

In a video title “My Cancer Is Showing No Signs Of Stopping! I'm Struggling Now” Daniel shares that he doesn't feel like himself anymore and that his energy and ambitions are gone, including those that he had for the channel. Indeed a common theme in his channel has been his disappointment with not been able to produce the content he wanted to. He promise to his viewers: “tomorrow I will post something fun” and “I’ll try to be a happier person”, and “I’m sorry this is boring”. A couple of days later a new video announces that Daniel is taking a break and plans a “new beginning for his vlog” and “the rebirth of Pewee Toms”. He confesses that life with a rare cancer is hard and lonely. He has lost sight of himself, listened “to bad advice”, and speaking only about cancer has made him miserable. From now own, he argues, he will only offer ‘cancer updates’ on Mondays. He will continue to vlog daily about other aspects of the end of his life. For example, he vlogs about a family trip. Daniel plans have again being diverted. His cancer get worse but he is taking part of trial and documenting it. He also celebrates reaching a 100k subscribers.

In order to gain a better understanding of each of the channels each videos was watched and assigned a moment that they addressed. This include: diagnosis, retrospective, Side effects, treatment, motivational, metastasis, emergency, Alternative cures, End of life, unrelated, Channel info, lifestyle, Wish fulfillment Using this information in combination with metadata in terms of number of videos and view count, the channels of So Fia and PeeWee Toms are visualized in Figure 6 and Figure 7.

Figure 6.

Figure 7.

Metastasis: updating followers and calls to action at the end of life

Both Sofia and Daniel announced on YouTube that their cancer had become incurable. These videos had at the time of the research generated for both vloggers also the most views, as well as a great deal of comments. Furthermore, because on YouTube content is always new for someone illness stories are not consumed linearly either. That is, because videos are recommended and suggested, or returned for queries, YouTube will find it and comment months after the original video has been was posted. In the case of Sofia this includes after her death.

Sofia posted on May 27, 2017 a video by the title, “My Cancer Is Worse Than Ever - Scan Results”. She is in her bedroom and speaks directly to the camera. She begins by greeting her viewers: “Hi welcome to my channel!” and follows with, “I need to tell you guys what is happening. You deserve to know” and “grab some tissues”. She describe the anticipation of her upcoming scans and how she hoped that they would mean she was now in remission. Viewers who had been following Sofia’s channel, would have also be waiting for an update. Unfortunately, the cancer is spreading down Sofia’s leg and we learn that “there is nothing else that can be done about it”. A clearly upset Sofia stops the video. In a new scene she shares with her viewers that her goal is to “enjoy life as much possible” and see as many sights as she can. She will go on a holiday ‘around the world’ with her family, including destinados such as Paris, London and New York. She addresses her viewers in a call for participation: “If you guys have any good ideas of what to do on those places, let me know in the comments below”. Again, we see Sofia under visible distress. She pronounces that “life is unfair”, “we need to find a cure for cancer” and that she “cant explain how painful this is for me and my family” and apologises: “I’m sorry for crying like this”. She thanks her viewers for their ongoing support. Running a YouTube channel has been for her an outlet and has enabled her to “get away from everything”, share her journey, and raise awareness. She concludes by remarking: “I have avocado socks, this will brighten your day”. She advises her viewers to enjoy life, be positive, and believe in themselves.

Daniel’s video is titled: “Cancer has won”. We see Daniel and his mother in their car. He looks directly at the camera and says: “they just told me it is inoperable now” and “nobody knows how long I have”. The video cuts to Daniel at home. He says, “This is probably the hardest video I have ever done”, the test results “were not good” and “surgery is not an option”. He also shares with his viewers that he has been “told to enjoy the next two weeks” since he is rapidly declining. In the mid time, he will be reaching out to other experts in order to see “if maybe there is something that they can do”. He remarks: “diet won't help”, “there is nothing at this point that will change” his condition, and that this is something that he must come to terms with. Daniel will continue with DNA sequencing in order to help other patients, even if not himself. He proclaims: “I’m am now documenting the end of my life” and “will continue to do so”. He thanks his viewers for watching, commenting, and liking his videos. The video concludes with footage of Daniel and his mother driving to the hospital (at the time of the recording unaware of the results) and then shows their reactions immediately afterwards.

Adressing the ‘haters’ and the difficulties of producing content.

Recommendation: networks of moments

Conclusions

• The role of Terminality/Metastasis in community engagement and narrative

• Increased presence of ‘Alternative Cures’ within recommendation network

• Decentralization of Memorialised Research Funding

• Misunderstanding of illness experience by YouTube viewers and increasing demands on content producers.

• Trolling on cancer vlogging and the effects that this might have on patients.