Feature
Telehealth is Opening Doors for Hospice and Palliative Care
Larry Beresford
Telehealth, which harnesses communication technologies to advance healthcare delivery through the remote exchange of data between patients and clinicians, thereby facilitating diagnosis, monitoring, treatment, education, and self-care, is a growing component of the US healthcare system. It has particular applications for patients who live in rural, isolated areas; are mobility-impaired; or otherwise lack access to needed care and for professional specialties and workforces—including hospice and palliative medicine—that don’t have adequate supply.
Also called telemedicine, it seeks to improve patient health through two-way, real-time interactive communication across a distance between the professional and patient, transmission of medical data via store-and-forward technology, remote patient monitoring with fixed or mobile home units, and mobile health via devices such as cell phones.
A handful of palliative care services across the country have found ways to incorporate telehealth into their continuum of services. Hospices, too, are exploring regulatory and practical requirements and opportunities, says Judi Lund Person, vice president, regulatory and compliance, for the National Hospice and Palliative Care Organization (NHPCO). “We’ve been trying to gather more information, exploring what the Centers for Medicare & Medicaid Services regard as telehealth and are willing to permit,” she said. Some hospices are slowly dipping their toes into the water, with concerns about the Health Insurance Portability and Accountability Act (HIPAA) and data security issues and questions about what devices would be considered HIPAA compliant.
Bringing Palliative Care to the Home
ProHEALTH, a large physician group and accountable care organization in New York, offers home-based palliative care and uses video visits to increase access to care for seriously ill patients, especially during off hours, says Dana Lustbader, MD, ProHEALTH’s chair of palliative care. She identifies five primary uses for video visits with palliative care patients: routine visits, urgent issues, routine visits to patients in remote areas, clinical support for the clinician while in the home, and family meetings. A video call allows multiple family members from anywhere in the country to participate in important conversations about concerns and treatment preferences.
At the VA Medical Center in San Francisco, a multidisciplinary palliative care clinic launched in 2009 was expanded in 2013 with the inclusion of telehealth connections to six outlying community-based outpatient clinics. Barbara Drye, MD, who runs the clinic, estimates that 5%–10% of total clinic visits now are done remotely via these video links, enabling patients who experience barriers to seeing medical specialists in person in the oncology or liver clinic to receive initial and follow-up medical visits. “In our system, travel is often onerous for patients seeing specialists. This is an obvious inconvenience, but even more important for our rural veterans who are strapped for funds for travel,” Dr. Drye said.
A year-old pilot project at Vanderbilt Medical Center in Nashville evaluating the feasibility of telemedicine was presented at the Annual Assembly in Phoenix in February 2017. “Our project uses telephone follow-up with home health patients or those seen by our inpatient consult service or outpatient clinic service,” said Matt Peachey, MD, assistant professor of pediatrics at Vanderbilt. The project’s HIPAA-compliant video conferencing technology enables homebound patients to speak with palliative medicine specialists. To date, 25 patients have been enrolled to continue goals-of-care discussions, introduce advance care planning, and screen for symptoms in clinic patients who are having difficulty making it to appointments or inpatients who need post-discharge follow-up about their condition and treatment but live some distance from the medical center.
Results are preliminary, Dr. Peachey said, “But we have found that trying to be overly complex with the technology is not helpful. Our best results have come from simple conversations over the telephone, which can be widely utilized with no delays for setup or training in the use of apps or devices.” Another key to the project is the partnership between palliative care and home healthcare providers in identifying patients who could benefit from this support.
What Are the Benefits of Telehealth?
There are a number of reasons why palliative care patients could have trouble connecting with their medical providers or obtaining access to needed care. They may live in remote, isolated, rural locations or have mobility impairments that make it hard to travel, such as a need for oxygen therapy or poor stamina. Specialists may be some distance from the patient, and provider staffing levels may not be sufficient to meet the need.
When patients are not able to get the support they need to address medical concerns in a timely and safe manner, the alternative may be a stressful and preventable trip to the emergency room. Remote contacts with the palliative care team can give patients understanding and a feeling of control over their medical condition, treatment, and other needs. Family caregivers, who are at risk for stress, burnout, and eventual failed care plans, also can benefit from remote connections with the palliative care team. They can participate in the video encounter, giving and receiving critical information.
“Participants in our pilot have expressed appreciation for having access to a provider who is focused on their symptom needs as well as the ability to talk about aspects of their care that do not get covered in clinic visits, due to time or uncertainty about how to bring up these concerns,” Dr. Peachey said. “Our project ideally will help with patient satisfaction, which is an ever-increasing focus of health care. More substantially, we are trying to show that simple interventions and discussions in follow-up may give patients access to appropriate resources without having to utilize the emergency room.”
“Five primary uses for video visits with palliative care patients [are] routine visits, urgent issues, routine visits to patients in remote areas, clinical support for the clinician while in the home, and family meetings.”
—Dana Lustbader, MD
For clinicians who visit the home, telehealth has the potential to pay dividends in efficiency and wider application of finite staff resources by significantly reducing the time spent behind the windshield. Vital signs such as blood pressure or blood sugar level could be transmitted from the home to the healthcare provider and, for patients at risk of falling, remote sensors can monitor information on their gait. Remote patient monitoring has so far proven less valuable to the palliative care team than telephone or video contacts with patients, Dr. Lustbader said.
“A video visit provides additional information that a telephone call simply cannot,” she said. “By seeing the patients in their environment, or by asking them to pan the room, you get a true sense of the environment they are living in. Additionally, when having a serious illness conversation, the visual of seeing patients and their reactions allows for a more effective conversation. You can’t see on the telephone when the patient or family member is quietly sobbing, but on the video call you can. You can change your response in a way you simply could not by telephone.”
Healthcare systems equally will appreciate the opportunities to leverage finite staff resources to see more patients and to care for covered patient populations from a value-based perspective. It will be possible to manage more patients more effectively while minimizing hospitalizations and leveraging the program’s expensive professional resources—especially given the documented shortage of palliative care clinicians nationwide. Remote communication links are a way to provide education and support to clinicians across diverse geographies, offer access to specialists to answer questions about difficult cases, and bring together widely disseminated teams for conferencing and mutual support.
Barriers to Telehealth
Although continued growth is projected for telehealth, there are barriers to its optimal utilization. Technology continues to advance but isn’t always accessible for a variety of reasons. Sometimes it requires knowledgeable staff with technical skills at both ends of the telehealth link to make it work. Consumers may be intimidated by the equipment and the virtual connection, although those with experience say this discomfort can be overcome regardless of the patient’s age.
“Our best results have come from simple conversations over the telephone, which can be widely utilized with no delays for setup or training in the use of apps or devices.”
—Matt Peachey, MD
Regulatory issues reflect another major concern, with professional licensing and other requirements that vary from state to state. Doctors wishing to practice across state lines face particular challenges to their scope of licensure. Privacy concerns and HIPAA requirements also need to be addressed. The reimbursement picture, although improving, is still far from parity with in-person visits, which is the goal of telehealth advocates. Grant support for new telehealth projects is not as available as it used to be.
Telehealth will expand in the next 5 years as family caregivers demand access to help through their hand-held devices, Dr. Lustbader predicts. “But there is a longer learning curve than many providers might think—for this or any new technology.” She adds that figuring out how to document the telehealth encounter and import it into the electronic health record is yet another challenge. Pursuing metrics to document costs, impact, and return on investment is crucial, experts say.
Phil Peterson, MD, of Bluefield, VA, a hospice medical director for Compassus and Medical Services of America in southern West Virginia and Southwest Virginia, says the logistical barriers can be greater than telehealth advocates realize. As chair of AAHPM’s State Health Policy Issues Working Group and an advocate for rural hospice issues, Dr. Peterson attends meetings in Washington, DC, where he encounters regulators who are surprised about the things that cannot be fixed by telehealth.
“I say that my home visits can take 1.5–2 hours each way, sometimes up a long, muddy, unpaved driveway,” he relates. “In my setting, 40% of our patients don’t have computer access.” Population density may not be sufficient for tech companies to want to invest in rural areas. There have been some efforts to improve the web-based infrastructure. “However, even when it is put into place, many people cannot afford the service,” Dr. Peterson said.
“The nurses who work for our hospice, when out seeing patients, often have to drive away from the house to where they can place a cell phone call to me. Then they drive back to the patient’s home to complete the visit. We have patients who keep a gun beside their beds because of concerns that someone might try to steal their pain medications. You have to consider that if telehealth equipment were placed in the home, then that, too, would expose them to increased risk of theft.”
The bottom line, Dr. Peterson says, is that telehealth is not a panacea. “One of my concerns is to make sure we don’t develop national regulatory policies mandating telehealth—assuming that all patients will have access to it—when it isn’t always available.” And yet, consider the demographic trends of a growing elderly population with multiple chronic conditions, particularly in isolated rural areas, with an inability to come to the doctor’s office. Their rural hospice medical directors often are only available part time. “Any tool that can be used to improve access is certainly an asset. I’m all for it for those reasons,” he said. “It’s a wonderful thing and increasingly necessary.”
What Is the Future of Palliative Telehealth?
Michael Fratkin, MD, a palliative care physician and telehealth champion in Eureka, CA, has led development of a service called ResolutionCare that covers rural expanses of the state’s rugged North Coast—with an integral role for telehealth. ResolutionCare is pioneering a hybrid programmatic design for palliative care combining videoconferencing, mobile health applications, telephonic support, and on-the-ground care, covered under value-based contracts with managed care organizations. It also is building an infrastructure to remotely offer education and support to palliative care teams in other communities.
“Here in the 21st century, we’re using the devices and technology that are available to facilitate more efficient exchange of information around all of the things that palliative care entails. We look at every patient, every situation as unique, and each will have a different mix of in-person and virtual care. We’re discovering that a combination of synchronous and asynchronous technologies can have enormous efficiencies—reducing windshield time so that more care can be provided,” he explains. To date, ResolutionCare has engaged with nearly 600 people, using remote care in about half of the cases and carrying a census of 100 patients for the past year.
“Home-based care of any sort is empowering for patients with serious illness,” Dr. Fratkin says. “By adding the tool of home-based video-conferencing, time savings add up for the people we care for as well as the people providing the care. And there can be distinct advantages that telehealth brings over ‘real life’—the in-person encounter—even beyond increased access and decreased windshield time.”
He describes a unique quality of intimacy for patients and for team members that emerges through the use of video conferencing. “It preserves the locus of control for both parties. When you go to the patient’s home in person, you are a major invasive force. They feel the need to present themselves in 3D, clean the house, and lock up the dog. The demands of schlepping patients around for medical visits add a profound burden on them,” he said. The doctor can control more of the user experience, working within the frame of a video screen and controlling what’s in that frame. “It’s actually possible for both parties to decide what they want the encounter to be. I do this from my car, from my home office, from the beach—wherever I can get a signal.”
A video-facilitated encounter also can be more efficient, with initial evaluations taking about half of the time as those conducted in person. There still are times when laying hands on the patient or seeing them in their home setting is critically important. For ResolutionCare, much of that is now done by community health workers—paraprofessionals out in the field most of the day.
Dr. Fratkin sees a bright future for telehealth in hospice and palliative care. “I am committed to creating and organically growing an impactful organization that provides greater access to palliative care with optimal use of state-of-the-art communication technology for underserved patients while providing sustainable, life-affirming work for palliative care professionals who can use the technology to define their work experience. These technologies are still new, and we’ve only scratched the surface. Palliative care is in a great position to pioneer these applications of telehealth for the whole healthcare system.”
Larry Beresford is a freelance medical journalist in Oakland, CA, specializing in hospice, palliative care, hospital medicine, and pain medicine. Contact him at This email address is being protected from spambots. You need JavaScript enabled to view it. , follow him on Twitter @larryberesford, or visit www.larryberesford.com.
To contact interviewees/contributors:
Barbara Drye at
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Michael Fratkin at
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Dana Lustbader at
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Judi Lund Person at
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Matthew Peachey at
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Phil Peterson at
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