By Rebecca Gagne-Henderson PhD, APRN, ACHPN
There is a place for telehealth. Those in rural areas are the most obvious recipients who would benefit from this care model. It affords rural residents access to care, and it goes a long way to solving that problem. However, even in this case, telehealth is not the panacea that advocates proclaim. In rural areas, the infrastructure to use technology is not up to the task (1). Like other innovations, policymakers and lobbyists are putting the cart before the horse. It may be prudent to lobby for the infrastructure (cable lines, broadband, and computer literacy) for rural areas before touting the discovery of the solution to access to healthcare in rural areas.
Another change being advocated for is the geographical limits of hospice service areas. Currently, in an emergency, a hospice must be able to make a home visit within 60 – 90 minutes dependent upon the area (i.e. Los Angeles traffic, rural areas). The purpose of lifting this regulation would be for the ability of large for-profit hospices to encroach into other markets by utilizing telemedicine. This regulation is for the benefit of the patient to have access to a caring human being with clinical skills to help in the moment of crisis in their home.
For my Master’s thesis in 2009, I created a model for home-based palliative care. This was at the onset of ambulatory palliative care programs. It seemed ridiculous to me that someone who was sick and symptomatic enough to need palliative care would be required to come to us. Rather we should be going to them. I recall a story relayed to me of a woman who took her oxygen tank onto the bus in the summer, sat in the waiting room for her visit and was transferred to the ED. Her palliative visit ended up with a hospitalization due to heat and exertion. This is the epitome of patient-centred care, no? Of course not. It was provider convenience: waiting room, exam tables, computers, and lab coats…all the accoutrements of the profession. Community care seemed the most logical and beneficial model for the patient and families. Besides, a visit to the home tells you so much more than a video/phone call or office visit. You will soon learn that the 75-year-old woman with metastatic breast cancer’s real problem is her “gamer” 45-year-old adult child drinking beer on the sofa all day. When you find this, you know the rule…if you don’t know what to do, call the social worker.
Of course, we who have worked in the community have run across the odd patient who hated having someone in the house. Even many of these patients end up enjoying these visits. A home visit alleviates isolation. So many of our patients have little to no contact with people. They have suffered the serial loss of generalized resistance resources, which is a natural occurrence (2, 3). These lost resources include driving, lunch dates, the support of a spouse who has died or adult children who live across the country, in addition to the loss of mobility and health (3). A phone call is not the same as a visit from a son across the country. A phone or zoom call is also not the same as a visit from a provider in the patient’s home. Palliative care is a high-touch, high-care specialty that includes handholding, or rubbing a back, and yes, once again, oxytocin. These in-person visits are very important to patients and caregivers.
In hospice, we have always had telehealth for after-hours emergent communication. Unfortunately, some agencies abused this feature. Once I was admitting a woman to hospice. Her sister was in the next room and was also on hospice with another agency. The family was distraught because the sister was in pain and the hospice was unresponsive to their phone calls. They begged me for my help in this emergent and dire situation. I interpreted that as consent to treat. I reviewed her plan of care and I advised them on how to use the medications to get her comfortable…so sue me. The family informed me that they had only seen the nurse once upon admission and all other visits were via telephone. I learned later that this agency was inVestigated by the CMS and fined heavily.
Telehealth is a landmine for missteps and missed opportunities. It is also a treasure trove to increase revenue. A hospice could easily double its census and never have to worry about hiring another nurse. The same for a house-call agency or an ambulatory palliative care practice which adopts telehealth. The same staff that travelled to the home could easily “see” twice as many patients via telehealth. Not quite as dramatic, but the palliative clinic could also increase its patient load each day. Can you say Cha-ching? You can hear the trill of excitement in their voices as the telehealth advocates and lobbyists beseech the lawmakers to make it all possible “for their patients” and woe to the dissenter who dares to point out the obvious. I’ve actually been blocked for my views ON TELEHEALTH! (May I add…LOL.) To date, the concentration by advocates, lobbyists and policymakers has been on reimbursement for these services (4).
There have recently been calls for National Board Certifications for physicians. This is in the interest of physicians being able to “see” and bill for patients across state lines. The hospital administrators and clinical entrepreneurs are frothing at the mouth. Already, the toe is in the water with internet medications for virility drugs and birth control. This is tantamount to “boiler room medicine”. It sounds great from a revenue and accessibility standpoint, but here comes the unforeseen consequence. Be careful what you wish for. We are well aware of the brain drain which occurs in countries with less monetary reward in medicine. A national boarding would eventually be of benefit to such countries by allowing their physicians to remain in place and practice from their homeland. They would be able to create less expensive “boiler rooms” for medicine, as the cost of living in those countries is lower. It is great for those physicians, their families and their countries, but not so good for U.S. physicians. In that same boiler room, they may even set up a telemedicine telemarketing center for their “practice”.
Unfortunately, there has not been enough consideration regarding inequities in telemedicine.
This model of care is in ordinately available to those with access and ability to utilize the technology (4). Marginalized and older people are less likely to have the knowledge to use the technology while others may not have the resources available to access the technology (4-7). There has been an increase in Hispanic and African-American communities in the use of Smartphones, but there needs to be more study regarding the use of such technologies in the telehealth arena (8)
There simply is not enough data allowing us to make intelligent decisions about this model (9). We need to know more about its efficacy, the perceptions of patients and caregivers, and potential pitfalls. Am I a cynic? In addition to being provocative, I am also cynical whenever a new shiny thing is glommed on because of its monetary potential, but I am also an optimist. My advice is to try and think ahead about negative ramifications, rather than reaping the benefits of short-sightedness and immediate gratification.
1. Drake C, Zhang Y, Chaiyachati KH, Polsky D, (2019). The limitations of poor broadband internet access for telemedicine use in rural America: an observational study. Annals of internal medicine, 382-384. The limitations of poor broadband internet access for telemedicine use in rural America: an observational study. Annals of Internal Medicine. 2019;171(5):382-4.
2. Antonovsky A. Unraveling the Mystery of Health. San Franciso: Jossey-Bass Publishers; 1987.
3. Gagne-Henderson R. Learning How Older People Form Sense of Coherence through an Interpretation of Their Experiences of Decline and Serious Illness during a 30-Day Readmission:
An Interpretive Description
. Lancashire, UK: Lancaster University; 2021.
4. Anaya YBM, Mota AB, Hernandez GD, Osorio A, Hayes-Bautista DE. Post-pandemic telehealth policy for primary care: an equity perspective. The Journal of the American Board of Family Medicine. 2022;35(3):588-92.
5. Eisma R, Dickinson A, Goodman J, Mival O, Syme A, Tiwari L, editors. Mutual inspiration in the development of new technology for older people. INCLUDE 2003; 2003.
6. Hanson J, Percival J, Aldred H, Brownsell S, Hawley M. Attitudes to telecare among older people, professional care workers and informal carers: a preventative strategy or crisis management?. Universal Access in the Information Society. 2007;6(2):193-205.
7. Benjamin R. Race after technology: Abolitionist tools for the new jim code.: Polity; 2019.
8. Anderson-Lewis C, Darville G, Mercado RE, Howell S, Di Maggio S. mHealth technology use and implications in historically underserved and minority populations in the United States: systematic literature review. JMIR mHealth and uHealth. 2018;6(6).
9. Hancock S, Preston N, Jones H, Gadoud ATipcibdbneas. Telehealth in palliative care is being described but not evaluated: a systematic review. BMC Palliative Care. 2019;18(18):1.
4 thoughts on “The Folly of Unforeseen Consequences: Let’s Talk About Telehealth”
As a Palliative NP that semi-retired I re-engaged in my work through Telehealth.. Yes, in rural communities you have to choose those that are able and comfortable in using telehealth (or computer technology) So at this point, I get the patient with more “urgent” pain and symptom management needs that are willing to do this via “remote” telemedicine. I must say that I at first was reluctant if I would be able to do the more intense conversations, but after several new patient visits, I have learned that visual contact promotes the contact needed to establish a personal relationship. Currently, I am following several patients that are in need of more intense symptom management as my colleague is less comfortable titrating narcotics to manage pain
Great points, as I mentioned, we had increased deaths on service when telehealth was all we had. Major barriers including the patient who would never admit to decline, can’t hear well enough for a phone call, doesn’t know what a computer or smartphone is, or just never answered the phone. I did find it helpful to extend our reach for those relatively stable for an extended period of time, ice and snow storms, and was grateful I could get credit for some lengthy phone calls and coordination with patients in-between visits. Prior to telehealth I would have had to do this on my own time and not be credited for a visit. One day my car broke down and it was all I had. Another time, I was recovering from COVID but not cleared for visits. Winter weather is always a problem. Telehealth also was preferable when families were self isolating for COVID and could wait for an in person visit. During staffing shortages many patients could only receive telehealth while the arduous hiring process grinded on.
As a very large national practice we have employees who contact patients and explain the services. Unfortunately, they also have scripted responses to rebuttals and seem like telemarketers. I felt like telehealth was used a business opportunity to get patients on service that normally wouldn’t want or accept a home visit. Unfortunately, some never relented and had to discharged later when they refused home visits and were declining and not allowing care. Others agreed only to get off the phone and then screamed at the nurse practitioner calling in for the initial visit. While helpful to extend our reach it does have its limitations.
As a social worker for a palliative care organization serving rural areas via telehealth (yes, when in doubt, call a social worker!) I have been amazed at the impact we have on people suffering with all of the challenges that come with having a complex or life-limiting illness. We help in countless ways with needs both physical and socio-emotional. We are reaching people who would otherwise not have access to palliative care, or if they did the burden of accessing it in person would be nearly insurmountable. We also serve as a defacto hospice provider when there is no licensed agency serving their address. Is it perfect? No, but then healthcare rarely is.
What I do see is that we make a very positive difference in the lives of our patients. We approach our work with a commitment and integrity that allows us to truly connect (yes, that’s possible using Zoom), to dig in and understand their story, and to partner with them to provide not only symptom management and coordination of care, but also access to income, housing, food, transportation and other basic needs that must be met in order to even approach living well with illness.
Concerns about large organizations cutting corners or providing scripted and impersonal care are valid. It happens in brick and mortar settings every day. Telehealth is not the issue. People and their priorities are the issue. There is always a way to be more “efficient” while hiding the less effective and less person centered result. So please do more research, with the goal of improving telehealth delivery not eliminating it. There are millions of people needing care, all with different needs and stories, and each one deserves whole person care until the very end.
Thank you for this thoughtful and spot-on analysis. My perspective is from the family caregiver side.
A total telehealth model also lets companies get around license-based regulations—at least that’s how it was in our state before covid. We discovered this after we had an abusive experience with a telehealth-based palliative provider. The state investigator told us that since the company hadn’t actually provided any hands-on in-home doctor visits or nursing care, and the company was insisting they were just a “care coordinator” that occasionally provided prescriptions and such, the company didn’t need to be licensed as a hospice or home health agency. And since they weren’t a licensed entity, they fell through a regulatory crack beyond reach.
But that wasn’t how the very expensive (well north of $1,000/month) enrollment had been sold to us. They’d sent a couple of nurses to the house to enroll my family member, and made it sound like it would be Hospice Lite, with nursing visits and medical support. After we signed the contract, we never saw those nurses again, neither in real life, nor virtually. The nurses we did eventually see were provided not by them, but via a referral to an over-burdened home health agency, which was billed to Medicare. The home health agency didn’t want to be on the case, because they said they were for rehabilitation, and my family member obviously had end-stage disease and was better suited to hospice. (Our area’s only hospice had recently discharged my family member, which is why we’d turned to the palliative care company. We were desperate for medical support.)
Our “palliative care” experience was harrowing and traumatic, involving financial malfeasance and more, too much to go into here. Pull back the green curtain, and there wasn’t much care behind the facade.
Telehealth has been hugely helpful to us in other ways, with other providers. I’m very grateful the option now exists for some situations. But after our experience, I’ve come to view the telehealth-based palliative care industry with great skepticism.