Mitigating Healthcare Nightmares with Care Monitoring Devices, Resources, and StreamYourCare
Jacob McCauley
Digital Literacy Advocate | Sharing and Improving Stories via Livestreams with Intervention Capabilities
There comes a point in time in most people’s lives when we lose the ability to provide for ourselves and those who depend on us. If we are fortunate, this does not begin until the late stages of our lives; even then, this submission of independence takes a toll on nearly all of us.
"It’s a loss of ability that you have had all your life. And there’s a tendency to act as if you still had it and then fail. Or be embarrassed. Or you have to accept that finally that you can’t do that anymore. That’s the rational thing to do. And it would be very nice if we just all did the rational thing to do, but we don’t."
"You can’t just decide rationally. Well, this is the way it’s got to be now, even though it was the other way then. You can say that to yourself, but that doesn’t mean you can do it. These are lifelong habits." — Herbert Fingarette from “97-Year-Old Philosopher Faces His Own Death”
For those living in rural, underpopulated areas, this loss of independence can have catastrophic effects. The relentless search for reliable caregivers, a trusted facility which will service your unique needs and limitations; Organizations which put their patients’ needs above all else are few and far between, and this is just the beginning.
As we approach the 2030 problem, healthcare systems worldwide will face an overwhelming influx of elderly patients. Over 10,000 seniors reach 65-years-old every day [Source]. The industry will continue to fail millions of seniors seeking treatment in ‘Profit Over People’ medical facilities. These organizations, often understaffed and underfunded, struggle to meet the growing needs they already cannot fulfill. Thus, the cycle of neglect continues, leaving individuals and their families to cope alone in a system that seems to have forgotten them.
Shawn, A 51-year-old West Virginia resident developed four stage-4 bed sores in a rehabilitation facility following an ATV accident in January 2023. He uses TikTok and Twitch to share his story, medical journey, and advocate for his different needs online. His community offers him support and companionship in hospitals, treatment facilities and at home. This support gives Shawn the chance to share the gospel, emphasizing the importance of personal faith and acceptance online.
Growing Demand for Accessible Advocacy and Monitoring Capabilities
The demand for accessible and affordable options to monitor care and spearhead self-representation expands daily. Organizations like PACE are contributing to these efforts by assembling teams of professionals to assist seniors maintain their independent living (see DUALS Act 2024) yet, the primary source of guardian abuse continues to be just that, at home when we least expect it. For many, it is an unending uphill battle which ultimately results in being transitioned into a facility; after which, quality of life declines, quality of care is disregarded, and resident agency can be slim to none.
The integration of technology into eldercare and disability support offers unprecedented opportunities to improve quality of life and maintain independence. Many individuals have discovered profound meaning by sharing their experiences on livestream-compatible social media platforms such as TikTok, Twitch, Facebook, or YouTube.
The accessibility advocacy group StreamYourCare has compiled a comprehensive, free list of tools, resources, and guides to assist those lacking the digital education and mobility to begin livestreaming independently. These efforts were motivated by the tragic death of Roger “Living in a Wheelchair” Faulkner who suffocated to death live on Twitch in a long-term care facility in 2021 due to negligence. See the moments that preceded his negligent death here.
The following is an excerpt from the wrongful-death case pursued by his daughter and family:
On June 14th, Roger “Living in a Wheelchair” Faulkner, a 66-year-old polymer scientist with ALS went live from the nursing home he had moved into just 9 days prior. The stream showed a facility staff member reposition Roger in bed. Roger immediately began to experience respiratory distress. Roger’s Twitch stream documents staff’s failure to respond to and conscious disregard of his distress. After Roger is repositioned by staff, he calls for help at least 9 times saying he can’t breathe at least another 10.
The alarm on his ventilator sounds, indicating that he is not getting enough oxygen to sustain life. As Roger succumbs to a lack of oxygen, live streamers [viewers] on Twitch becoming increasingly concerned, so concerned that they begin publicizing the care facility name and address and calling Roger’s cell phone in a futile effort to secure help for him. The care facility staff continues to observe and ignore Roger. The facility ignored his calls for help for over 40 minutes. Staff entered Roger’s room at least 6 times during this time, each time disregarding his clear signs of respiratory distress and desparate requests for assistance. Roger died on camera, surrounded by caregivers who were legally and morally obligated to protect him. They offered him no assistance, not so much as touching him until long after he had passed.
Roger started streaming on Twitch in 2019 to leave a video diary for his family and friends to be able to go back and view long after he had passed away. After a few months of streaming, interviews, and a TEDx talk, Roger had a dedicated community which tuned-in to keep him company on the toilet, in the shower, during respite stays in hospice facilities, and long-term care environments.
For a senior with a terminal illness, this was a radical method of legacy building far beyond his understanding. He streamed 770 out of 866 days on the platform, logging 3400 hours worth of videos and capturing over 700 clips on his channel.
In March of 2022, “Esther’s Law” was passed in Ohio, granting individuals and their representatives explicit permission to install monitoring devices in their long-term care facility room where care is being administered. COVID-19 has fast-tracked similiar legislation in many states across America and a few other administrative regions in countries outside the United States.
Digital Bystander Intervention Strategies (DBIS)
The ability for audience members or livestreamers to intervene during emergencies and moments requiring privacy has become more accessible.
Free stream-management tools such as Streamer.Bot or Twitchat have revolutionized the livestreaming experience allowing streamers and their audiences to activate IoT alarms (smart bulbs and smart speakers), alert notifications, privacy overlays, and engage emergency services with.
These features empower individuals to maintain their privacy and safety while cultivating a supportive community that can act quickly in critical situations.
Privacy Overlay Commands
!brb—toggles a "Be Right Back" screen when patients or their caregivers request a moment of privacy.
Alert Commands
!valert — a vote-based command which sends a Discord server notification to requesting @alert pingee roles to check in on the stream.
Discord Notification:
Printouts for Facility Room Doors
Livestream/Monitoring in Progress printouts allow visitors and medical personnel to know whether or not they’re being recorded. They also notify staff about what kind of privacy options they have access to and the individuals which consented to the monitoring/stream.
Consent to Record/Broadcast Form
A form to request permission to monitor/livestream from within a long-term care facility room. In some places, consent from facility administration, nurses, and patient roommates (or neighbors) are mandated.
Care Stream Modification Request for Caregivers
This form allows caregivers and nurses the opportunity to anonymously make requests to revise the streaming/monitoring routines of the patient. Individuals can bring multiple copies of this document with them to establish mutual respect with their caregivers and facilities.
Advisory to Handle with Extra Care
When a patient experiences severe pain, they often abruptly communicate their needs to avoid additional harm. However, this urgency can sometimes compound microaggressions which may lead to further mistreatment. Placing reminders on the doors of a patient’s room can help mitigate emotional responses and potential retaliation, esepcially when medical personnel struggle to adapt to their patient’s specific needs and limitations.
Voice Controls
Starts and stops streaming on OBS, sends a “going live” notification to your chat and Discord
“Action Please” — Starts your local VOD recording
“Stop the Recording Please” — Stops the VOD recording
Show Chat
领英推荐
Slowmode On/Off
Slowmode Activate — Adds a (10–30s) delay to your Twitch chat frequency. Allowing you a moment to read an influx of messages from viewers.
Slowmode Off — removes SlowMode restrictions
Shieldmode On/Off
“Safe Talking” — Toggles 30s delay between individual users messages and ensures followers must have 60 minutes of follow-time before messaging in chat.
VodReview
“Time Stamp Please” or !vr {reason} sends a VOD review request to your Discord server alert channel.
Discord Notification
Check-In Commands
“Safety Check” Lets your viewers know you are okay, and that you’ll be back
“False Alarm” — Lets your viewers know you are no longer in need of assistance
Toggle Mic On/Off
“Toggle Mic” switches your microphone on or off when personal identifying information, protected health information, or sensitive data is being shared.
Toggle Camera On/Off
“Toggle Camera” switches your camera on or off for moments where visual privacy is necessary.
Toggle Subtitles
Opens Windows “Live Captions” program for quick subtitle access on screen
Launch Games
GeoTastic (On Stream)
Launch Applications
Web-based StreamDeck
Interviews
StreamYourCare conducts interviews for livestreamers with disabilities to help share their stories and advocate for their unique needs. These interviews started as a user experience (UX) research class project with the University of Chicago. StreamYourCare submitted their discoveries to Twitch and TikTok proposing targeted accessibility enhhancements for these platforms.
An incredible discussion with Steven, known as @Illenialwheeler on Twitch, a dedicated gamer overcoming the challenges of Duchenne Muscular Dystrophy. Steven uses a quadstick to play games like Elden Ring, BioShock, Pokémon HeartGold/SoulSilver; and speedruns games like Donkey Kong Country 2, Lilo & Stitch (GBA). @Illenialwheeler also streams quadstick profile configuration assemblies to share with others how to configure and use the quadstick with many different games.
If you currently use social media to share your medical journey, StreamYourCare would love the opportunity to interview you for your channel or help you get started with digital bystander and upstander intervention features. StreamYourCare creates everything at no-cost because they believe that offering these features for free is essential to the future of equitable healthcare reform. The challenges we face today require innovative solutions with community-oriented approaches to accomodate for the vast complexities of the impending 2030 crisis.
To anyone feeling isolated in their healthcare journey or seeking to maintain their independence, know that resources, communities, and individuals are dedicated to amplifying your voice and ensuring your well-being. Check out StreamYourCare’s guide to U.S regulations on long-term care monitoring devices, or reach out to them here to get started. Don’t allow medical routines and personnel define your story, take control of your own narrative.
If you have any questions or concerns, don't hesitate to comment or reach out in my messages.
Further Reading