More Families Are Using Nanny Cams to Watch Elderly Loved Ones, Raising Ethical Questions
After Jackie Costanzo's mother broke her right hip in a fall, she needed more hands-on care in her assisted-living apartment near Sacramento, California. A social worker from her health plan suggested installing a video camera to help ensure those services were provided.
Without the camera, Costanzo wouldn't have a way to confirm that caregivers had followed through with serving meals, changing clothes, and fulfilling other care needs.
When Costanzo placed the device in May 2018, she informed the administrator and staff, and at first, there were no objections. The facility posted a sign on the apartment's front door, alerting anyone who entered of recording in progress.
But this past spring, a new management company came across the sign and threatened to issue a 30-day eviction notice to her 93-year-old mother, Louise Munch, who has dementia, for violating a policy that prohibits cameras in residents' rooms. With encouragement from California Advocates for Nursing Home Reform, Costanzo researched the state's regulations but couldn't find anything to support or deny camera use. She refused to remove the recording device and prevailed.
"In essence, my mom was 'grandfathered in' because she moved in under a management company that did not specify that residents could not have cameras," says Costanzo, 73, a retired elementary schoolteacher who lives a three-hour drive away, in Silicon Valley, and visits one day every two weeks. Without the camera, Costanzo, who is her mother's only surviving child, wouldn't have a way to confirm that caregivers had followed through with serving meals, changing clothes, and fulfilling other care needs.
As technological innovations enable next of kin to remain apprised of the elderly's daily care in long-term care facilities, surveillance cameras bring legal and privacy issues to the forefront of a complex ethical debate. Families place them overtly or covertly—disguised in a makeshift clock radio, for instance—when they suspect or fear abuse or neglect, so they can maintain a watchful eye, perhaps deterring egregious behavior. But the cameras also capture intimate caregiving tasks, such as bathing and toileting, as well as dressing and undressing, which may undermine the dignity of residents.
So far, laws or guidelines in eight states—Illinois, Maryland, New Mexico, Oklahoma, Texas, Utah, Virginia, and Washington—have granted families the rights to install cameras in a resident's room. In addition, about 15 other states have proposed legislation. Some states, such as Pennsylvania, have put forth regulatory compliance guidance, according to a column published in the July/August 2018 issue of Annals of Long-Term Care.
The increasing prevalence of this legislation has placed it on the radar of long-term care providers. It also suggests a trend to clarify responsible camera use in monitoring services while respecting privacy, says Victor Lane Rose, the column's editor and director of aging services at ECRI Institute, a health care nonprofit near Philadelphia, Pennsylvania.
In most cases, a resident's family installs a camera or instigates a request in hopes of sparing their loved one from the harms of abuse, says James Wright, a family physician who serves as the ethics committee's vice chair of the Society for Post-Acute and Long-Term Care Medicine in Columbia, Maryland. A camera also allows the family to check in on the resident from afar and remain on alert for a potential fall or agitated state, he says.
"It's rare that a facility will have 24-hour presence in a patient's room. You won't have a nurse in there all the time," says Wright, who is also medical director of two long-term care centers and one assisted-living facility around Richmond, Virginia. Particularly "with dementia, the family often wonders" if their loved one is safe.
While offering families peace of mind, he notes that video cameras can also help exonerate caregivers accused of abuse or theft. Hearing aids, which typically cost between $2,000 and $3,000 each, often go missing. By reviewing a video together, families and administrators may find clues to a device's disappearance. Conversely, Wright empathizes with the main counterargument against camera use, which is the belief that "invasion of privacy is also invasion of human dignity."
In respecting modesty, ethical questions abound over whether a camera should be turned off when a patient is in the midst of receiving personal care, such as dressing and undressing or using bedpans. Other ethical issues revolve around who may access the recordings, says Lori Smetanka, executive director of the National Consumer Voice for Quality Long-Term Care in Washington, D.C.
Video cameras, she contends, are only one tool in shielding residents from abuse. They are "not substitutes for personal involvement," she says. "People need to be very vigilant visiting their family members, and facilities have a responsibility to ensure that residents are free of abuse."
Lack of accountability perpetuates abuse in long-term care settings and stems in large part from systemic underfunding.
Educating employees in abuse prevention becomes paramount, and families should ask about staff training before placing their loved one in a long-term care facility, Smetanka says. Prior to installing a camera, she recommends consulting an attorney who is familiar with this issue.
But thoughts of a camera often don't occur to families until an adverse event affects their loved one, says Toby Edelman, a senior policy attorney at the Center for Medicare Advocacy, a nonprofit organization with headquarters in Washington, D.C., and Connecticut.
"These cameras can show exactly what's going on," she explains, noting that prosecutors have used the recordings in litigation. "When residents have injuries of unknown origin" and they can't verbalize what happened to them, "the cameras may document that yes, the resident was actually hit by somebody."
With a resident's safety and security being "the most important consideration," the American Health Care Association in Washington, D.C., which represents long-term and post-acute care providers, supports allowing states, clinicians, and patients to decide about camera use on a local level, says David Gifford, senior vice president of quality and regulatory affairs and chief medical officer.
"We've seen some success with tools such as permissive legislation, where residents and their loved ones have the ability to determine whether a camera is right for them while working with the center openly and ensuring the confidentiality of other residents," says Gifford, who practiced as a geriatrician. "It is important to note, however, that surveillance cameras are still only one element of the quality matrix. We can never hope to truly improve quality care by catching bad actors after the fact."
Lack of accountability perpetuates abuse in long-term care settings and stems in large part from systemic underfunding. Low wages and morale are tied to high turnover, and cameras don't address this overarching problem, says Clara Berridge, an assistant professor of social work at the University of Washington in Seattle, who has co-authored articles on surveillance devices in elder care.
Employees often don't perceive a nursing assistant position as a long-term career trajectory and may not feel vested in the workplace. Training in the recognition and reporting of abuse becomes ineffective when workers quit shortly thereafter. Many must juggle multiple jobs to make ends meet. Staffing shortages are endemic, leading to inadequate oversight of residents and voicing of abuse complaints, she says.
In Berridge's assessment, cameras may do more harm than good. Respondents to a survey she conducted of nursing homes and assisted-living facilities in the United States found that recording devices tend to fuel workers' anxiety amid a culture that further demoralizes and dehumanizes the care they provide.
Consent becomes particularly thorny in shared rooms, which are more common than not in nursing homes. States that permit in-room cameras mandate that roommates or their legal representative be made aware. Even if the camera is directed away from their bed, it will still capture conversations as well as movements that enter its scope. "Surveillance isn't the best way to protect adults in need of support," Berridge says. "Public investment in quality care is."
"The camera is invaluable. But there's no law that says you can have it automatically, so that's wrong."
In the one-bedroom assisted-living apartment where Costanzo's mother lives alone, consent from another resident wasn't needed. Without a roommate, the camera is much less intrusive, although Costanzo wishes she had put one in the living room, not just the bedroom, for more security.
Her safety concerns escalated when she read about a Texas serial killer who smothered victims after gaining access to senior care facilities by "masquerading as a maintenance man." She points to such horrifying incidents, although exceedingly rare, as further justification for permitting cameras to help guard the vulnerable against abuse in long-term care settings. And she hopes to advocate for an applicable law in California.
"The camera is invaluable," says Costanzo, who pays for monthly Wi-Fi service so she can see and interact with her mother, who turns 94 in October, any time of day or night. "But there's no law that says you can have it automatically, so that's wrong."
New implants let paraplegics surf the web and play computer games
When I greeted Rodney Gorham, age 63, in an online chat session, he replied within seconds: “My pleasure.”
“Are you moving parts of your body as you type?” I asked.
This time, his response came about five minutes later: “I position the cursor with the eye tracking and select the same with moving my ankles.” Gorham, a former sales representative from Melbourne, Australia, living with amyotrophic lateral sclerosis, or ALS, a rare form of Lou Gehrig’s disease that impairs the brain’s nerve cells and the spinal cord, limiting the ability to move. ALS essentially “locks” a person inside their own body. Gorham is conversing with me by typing with his mind only–no fingers in between his brain and his computer.
The brain-computer interface enabling this feat is called the Stentrode. It's the brainchild of Synchron, a company backed by Amazon’s Jeff Bezos and Microsoft cofounder Bill Gates. After Gorham’s neurologist recommended that he try it, he became one of the first volunteers to have an 8mm stent, laced with small electrodes, implanted into his jugular vein and guided by a surgeon into a blood vessel near the part of his brain that controls movement.
After arriving at their destination, these tiny sensors can detect neural activity. They relay these messages through a small receiver implanted under the skin to a computer, which then translates the information into words. This minimally invasive surgery takes a day and is painless, according to Gorham. Recovery time is typically short, about two days.
When a paralyzed patient thinks about trying to move their arms or legs, the motor cortex will fire patterns that are specific to the patient’s thoughts.
When a paralyzed patient such as Gorham thinks about trying to move their arms or legs, the motor cortex will fire patterns that are specific to the patient’s thoughts. This pattern is detected by the Stentrode and relayed to a computer that learns to associate this pattern with the patient’s physical movements. The computer recognizes thoughts about kicking, making a fist and other movements as signals for clicking a mouse or pushing certain letters on a keyboard. An additional eye-tracking device controls the movement of the computer cursor.
The process works on a letter by letter basis. That’s why longer and more nuanced responses often involve some trial and error. “I have been using this for about two years, and I enjoy the sessions,” Gorham typed during our chat session. Zafar Faraz, field clinical engineer at Synchron, sat next to Gorham, providing help when required. Gorham had suffered without internet access, but now he looks forward to surfing the web and playing video games.
Gorham, age 63, has been enjoying Stentrode sessions for about two years.
Rodeny Dekker
The BCI revolution
In the summer of 2021, Synchron became the first company to receive the FDA’s Investigational Device Exemption, which allows research trials on the Stentrode in human patients. This past summer, the company, together with scientists from Icahn School of Medicine at Mount Sinai and the Neurology and Neurosurgery Department at Utrecht University, published a paper offering a framework for how to develop BCIs for patients with severe paralysis – those who can't use their upper limbs to type or use digital devices.
Three months ago, Synchron announced the enrollment of six patients in a study called COMMAND based in the U.S. The company will seek approval next year from the FDA to make the Stentrode available for sale commercially. Meanwhile, other companies are making progress in the field of BCIs. In August, Neuralink announced a $280 million financing round, the biggest fundraiser yet in the field. Last December, Synchron announced a $75 million financing round. “One thing I can promise you, in five years from now, we’re not going to be where we are today. We're going to be in a very different place,” says Elad I. Levy, professor of neurosurgery and radiology at State University of New York in Buffalo.
The risk of hacking exists, always. Cybercriminals, for example, might steal sensitive personal data for financial reasons, blackmailing, or to spread malware to other connected devices while extremist groups could potentially hack BCIs to manipulate individuals into supporting their causes or carrying out actions on their behalf.
“The prospect of bestowing individuals with paralysis a renewed avenue for communication and motor functionality is a step forward in neurotech,” says Hayley Nelson, a neuroscientist and founder of The Academy of Cognitive and Behavioral Neuroscience. “It is an exciting breakthrough in a world of devastating, scary diseases,” says Neil McArthur, a professor of philosophy and director of the Centre for Professional and Applied Ethics at the University of Manitoba. “To connect with the world when you are trapped inside your body is incredible.”
While the benefits for the paraplegic community are promising, the Stentrode’s long-term effectiveness and overall impact needs more research on safety. “Potential risks like inflammation, damage to neural tissue, or unexpected shifts in synaptic transmission due to the implant warrant thorough exploration,” Nelson says.
There are also concens about data privacy concerns and the policies of companies to safeguard information processed through BCIs. “Often, Big Tech is ahead of the regulators because the latter didn’t envisage such a turn of events...and companies take advantage of the lack of legal framework to push forward,” McArthur says. Hacking is another risk. Cybercriminals could steal sensitive personal data for financial reasons, blackmailing, or to spread malware to other connected devices. Extremist groups could potentially hack BCIs to manipulate individuals into supporting their causes or carrying out actions on their behalf.
“We have to protect patient identity, patient safety and patient integrity,” Levy says. “In the same way that we protect our phones or computers from hackers, we have to stay ahead with anti-hacking software.” Even so, Levy thinks the anticipated benefits for the quadriplegic community outweigh the potential risks. “We are on the precipice of an amazing technology. In the future, we would be able to connect patients to peripheral devices that enhance their quality of life.”
In the near future, the Stentrode could enable patients to use the Stentrode to activate their wheelchairs, iPods or voice modulators. Synchron's focus is on using its BCI to help patients with significant mobility restrictions—not to enhance the lives of healthy people without any illnesses. Levy says we are not prepared for the implications of endowing people with superpowers.
I wondered what Gorham thought about that. “Pardon my question, but do you feel like you have sort of transcended human nature, being the first in a big line of cybernetic people doing marvelous things with their mind only?” was my last question to Gorham.
A slight smile formed on his lips. In less than a minute, he typed: “I do a little.”
Leading XPRIZE Healthspan and Beating Negativity with Dr. Peter Diamandis
A new competition by the XPRIZE Foundation is offering $101 million to researchers who discover therapies that give a boost to people aged 65-80 so their bodies perform more like when they were middle-aged.
For today’s podcast episode, I talked with Dr. Peter Diamandis, XPRIZE’s founder and executive chairman. Under Peter’s leadership, XPRIZE has launched 27 previous competitions with over $300 million in prize purses. The latest contest aims to enhance healthspan, or the period of life when older people can play with their grandkids without any restriction, disability or disease. Such breakthroughs could help prevent chronic diseases that are closely linked to aging. These illnesses are costly to manage and threaten to overwhelm the healthcare system, as the number of Americans over age 65 is rising fast.
In this competition, called XPRIZE Healthspan, multiple awards are available, depending on what’s achieved, with support from the nonprofit Hevolution Foundation and Chip Wilson, the founder of Lululemon and nonprofit SOLVE FSHD. The biggest prize, $81 million, is for improvements in cognition, muscle and immunity by 20 years. An improvement of 15 years will net $71 million, and 10 years will net $61 million.
In our conversation for this episode, Peter talks about his plans for XPRIZE Healthspan and why exponential technologies make the current era - even with all of its challenges - the most exciting time in human history. We discuss the best mental outlook that supports a person in becoming truly innovative, as well as the downsides of too much risk aversion. We talk about how to overcome the negativity bias in ourselves and in mainstream media, how Peter has shifted his own mindset to become more positive over the years, how to inspire a culture of innovation, Peter’s personal recommendations for lifestyle strategies to live longer and healthier, the innovations we can expect in various fields by 2030, the future of education and the importance of democratizing tech and innovation.
In addition to Peter’s pioneering leadership of XPRIZE, he is also the Executive Founder of Singularity University. In 2014, he was named by Fortune as one of the “World’s 50 Greatest Leaders.” As an entrepreneur, he’s started over 25 companies in the areas of health-tech, space, venture capital and education. He’s Co-founder and Vice-Chairman of two public companies, Celularity and Vaxxinity, plus being Co-founder & Chairman of Fountain Life, a fully-integrated platform delivering predictive, preventative, personalized and data-driven health. He also serves as Co-founder of BOLD Capital Partners, a venture fund with a half-billion dollars under management being invested in exponential technologies and longevity companies. Peter is a New York Times Bestselling author of four books, noted during our conversation and in the show notes of this episode. He has degrees in molecular genetics and aerospace engineering from MIT and holds an M.D. from Harvard Medical School.
Show links
- Peter Diamandis bio
- New XPRIZE Healthspan
- Peter Diamandis books
- 27 XPRIZE competitions and counting
- Life Force by Peter Diamandis and Tony Robbins
- Peter Diamandis Twitter
- Longevity Insider newsletter – AI identifies the news
- Peter Diamandis Longevity Handbook
- Hevolution funding for longevity
XPRIZE Founder Peter Diamandis speaks with Mehmoud Khan, CEO of Hevolution Foundation, at the launch of XPRIZE Healthspan.
Hevolution Foundation