At first, palliative care and technology might seem like strange bedfellows. At its core, palliative care is a very human side of medicine, relying heavily on talking with and listening to people to understand their experiences and goals. Technology, on the other hand, can often feel impersonal, cold, and one-size-fits-all. Despite this apparent disconnect, researchers and clinicians are finding new ways to harness technology to facilitate communication between patients and caregivers.
The biggest strides are being made in telehealth (or telemedicine) and in monitoring patients remotely. Through simple technologies like the telephone, patients and their families can communicate in real time with their palliative care team, wherever their respective locations. Videoconferences via laptops and iPads are allowing doctors to provide support and advice to patients or caregivers who are unsure what to do when they experience problems. Videoconferencing is also being used for multidisciplinary team meetings among clinicians, which can improve continuity of care. These relatively simple tools are helping health care providers identify and manage a patient’s symptoms before they worsen and a trip to the hospital becomes necessary.
“Simple technological interventions are important because they have an impact on access,” says Christine Ritchie of the University of California at San Francisco School of Medicine (Figure 1, upper right). “This means both giving people access despite their location or other limited resources and allowing access to one’s team around the clock,” she continues. New technologies are also helping with a major problem in palliative care: the shortage of trained specialists, particularly in rural areas, along with the insufficient training of generalist care providers.
There is an approximately 10,000-physician shortage in palliative care clinicians in the United States, according to Arif Kamal of the Duke University School of Medicine (Figure 2, right). Technology can help address this gap by providing point-of-care tools for clinicians. “There’s a massive demand that we cannot keep up with,” says Ritchie. “We have more people aging and more people living with serious illness, so there is a growing appreciation and demand for palliative care services.”
Outgrowth of the Hospice Movement
Today’s concept of palliative care, focused on improving the quality of life for people with serious illnesses as well as for their caregivers, grew out of the hospice movement of the 1970s, which aimed to help patients and caregivers with the stresses of having a serious illness, sometimes, but not necessarily, near the end of life. As a medical specialty, palliative care has grown by about 150% over the last decade and is available in over two-thirds of all U.S. hospitals. A 2015 report card conducted by the Center to Advance Palliative Care (CAPC) and the National Palliative Care Research Center tracked the growth of palliative care in hospitals across the country. The report found that while gaps in access remain, there was a continued increase in the number of hospital palliative care teams in the United States, with 67% of hospitals having 50 or more beds and 90% having 300 or more beds now being staffed with palliative care teams.
The goal of palliative care is to provide an added layer of support for patients, their families, and their doctors. Care is delivered by a team of professionals who deal with patients holistically, addressing their physical, emotional, spiritual, and social needs. Serious illness can cause different types of pain. A palliative care team is available to identify and treat sources of physical pain and discomfort—such as problems breathing, sleeping, or performing other bodily functions—but also to address a patient’s emotional and spiritual suffering. Emotional support involves focusing on the entire person and not just his or her illness. A palliative care team can provide support by listening to patients’ concerns, easing their psychological suffering, and recommending complementary care from spiritual advisors.
The problem, however, has been that it is not always easy for patients to access health care professionals. Getting to a clinic can be burdensome for seriously ill patients; many, especially those in rural areas, live far from the nearest palliative care specialist. Telehealth technologies have been the most natural way to overcome these challenges. One example is the Educate, Nurture, Advise Before Life Ends (ENABLE) telemedicine intervention, which began in 1999 and has been tested and implemented in settings across the United States. The intervention provides palliative care soon after a cancer diagnosis and uses a coaching model that empowers patients and caregivers to prevent crises by anticipating and planning for the challenges ahead.
The ENABLE intervention begins with an in-person assessment by a palliative care provider, followed by structured weekly phone calls with nurse coaches focused on problem solving, communication, symptom management, and advance-care planning. After these initial sessions, ongoing monthly phone follow-ups and care coordination continue. The nurse coaches work with patients and caregivers as they navigate the medical system and present options for care that match patients’ needs and values. A randomized, controlled trial showed that patients participating in the ENABLE intervention had better scores for quality of life, mood, and symptom intensity, as well as improved survival. Most of the patients lived in rural New Hampshire or Vermont, demonstrating the successful use of telemedicine where access to face-to-face services can be difficult.
“I don’t think technology will take the place of people being present and engaging in therapeutic interactions,” says Ritchie. “But there are a lot of opportunities to enhance our engagement with people through the use of technology. Technology can allow us to engage with each other through distance. Due to the challenges around access, the benefits outweigh the potential burdens.”
Remote Monitoring, a Key
Remote monitoring is an important component in all of this. Various forms of remote monitoring give patients and their caregivers the ability to record and transmit symptoms to the health care team and rapidly receive treatment adjustments, if necessary. Remote sensors connected to peripheral devices can collect physiological data such as blood pressure, blood-sugar level, or pulse. These data can then be transmitted to health care providers via wireless telecommunication devices.
For patients who are at risk for falls, remote monitoring technology promotes safety through continuous surveillance: individuals can wear sensors that monitor and transmit information on their gait, location, linear acceleration, and angular velocity. These devices can predict the likelihood of falls, detect movement changes, and alert caregivers immediately if the individual does fall. Monitoring the severity or frequency of symptoms outside of clinic appointments allows any irregularities to be caught before they turn into serious problems. “That information helps us put together a comprehensive plan of care for people who oftentimes have stresses that change throughout the day or week and that are not always obvious to their doctors when they see us at the clinic,” explains Kamal.
For example, Ritchie and her colleagues are developing tools to monitor patients’ thinking and functioning when they are taking various medications for their symptoms. “Sometimes it’s helpful for both providers and patients to be able to have realtime feedback on how a medicine is affecting them in a way that they may have difficulty describing,” says Ritchie.
The project, known as the Cognition-Activity Assessment in Response to Rx Interventions (“CARRI,” for short), aims to develop a mobile health tool that improves doctors’ understanding of the effects of pain medications on older adults with chronic pain. Many patients receiving palliative care experience chronic pain, but very little research exists on how best to manage pain in older adults. The mobile health tool combines information from an iPad app and from an activity monitor worn on the patient’s wrist to measure brain function and physical activity. Ritchie and her colleagues say such a tool will enable clinicians to better evaluate fluctuations in medication effectiveness and side effects over the course of the day and ultimately provide more rapid assessments for guiding therapy in real time.
Remote monitoring can also help with a significant problem in palliative care: caregiver burnout. Kamal says that about a third of all American adults are caregivers to another adult with a medical condition. This responsibility comes with significant financial and logistical issues. “The stress felt by caregivers is a priority for health systems because when caregivers feel stressed or overwhelmed, they lean heavily on the medical system for help,” reports Kamal. “Remote monitoring technology has the potential to monitor for when issues start causing unmanageable stress and alert the care team before things get out of control.”
One recent study showed that a telephone-based, automated, interactive voice-response system was effective in remotely monitoring and managing symptoms experienced by caregivers, such as fatigue, depressed mood, anxiety, and interference with normal activities. Caregivers called the system daily to report the presence and severity of their symptoms and received automated, tailored coaching in return. Those who took part in this telehealth intervention reported reduced physical and psychological distresses.
Spreading Specialized Knowledge to the Generalist Physician
“Much of the gap in unmet palliative care needs is due to the generalist physician not knowing what to ask,” according to Christopher Cox, also of the Duke University School of Medicine (Figure 3, right). “Palliative care specialists have great expertise and advanced skills in communication and decision making, but I’m not convinced that a lot of these things could not be provided by generalists. The problem is [generalists] don’t have systems that help them identify patients’ needs.”
Technology can help in the widespread dissemination of core knowledge and skills that most generalist physicians do not have yet critically need. According to R. Sean Morrison, director of the National Palliative Care Research Center in New York City (Figure 4, lower right), what is needed is practical training in a manner that can engage physicians during their practice to bring them up to a minimal quality standard. “This involves new e-learning initiatives, and it requires producing those platforms so that busy physicians can do them, for instance, on their phones in between seeing patients,” Morrison says.
Two organizations – CAPC and Vital Talk – use web-based technology to teach communication skills to clinicians (Figure 5). The goal of both programs is to help clinicians talk about serious illness and palliative care with their patients. For instance, a clinician might learn the steps involved in breaking bad news to a patient, such as laying out options, weighing pros and cons, offering a prognosis, and reinforcing positives, while keeping in mind the patient’s perspective on the situation and remaining empathetic. CAPC offers five self-study online courses for clinicians from all disciplines, while Vital Talk provides a website with video clips as well as a phone app that allows providers to receive input and feedback on communication.
To better track and quantify palliative care measures and let doctors know what’s successful, Kamal and his colleagues at the Duke Cancer Care Research Program created the Quality Data Collection Tool (QDACT). QDACT (Figure 6) is a technology- based quality monitoring system for palliative care. It combines patient-reported data with critical palliative care steps such as advance-care planning and inclusion of caregivers. The goal of QDACT is to document care quality and link measures of quality of life to outcomes in palliative care. “It collects data on quality while clinicians take care of patients, to help remind [clinicians] of some areas to focus on or some unmet needs to address,” says Kamal.
Clinicians are also looking to electronic health records to develop tools for improving the quality of palliative care. “Electronic health records can help us screen and target those individuals with unmet palliative care needs,” says J. Randall Curtis, director of the Cambia Palliative Care Center of Excellence at the University of Washington (Figure 7). “We are very interested in using electronic health records to design tools that will allow us to assess the quality of palliative care that we’re providing, identify areas for improvement, and then document the interventions we provide.”
Finally, technology is being used to increase awareness of palliative care and provide resources and communities for patients and caregivers. Social media creates spaces where people can have conversations about the role of palliative care and share their experiences. For instance, the Conversation Project is a public engagement organization that encourages people to discuss their end-of-life wishes with their families. It provides a media and public awareness component and also offers tools that can help people have these difficult conversations.
Integrating technological advances into a field like palliative care is not without its challenges. One potential issue involves asking patients with serious illnesses and their caregivers to interact with something that may seem foreign or obtrusive. Morrison says that, although most of the current palliative care population consists of older adults who may not be very techsavvy, that’s going to change. “As the baby boomers age and we see that generational change, we’re going to have a whole generation of older adults with serious illnesses who are comfortable with technology,” he continues. “But right now, that learning curve is a barrier.”
Reimbursement is also a challenge. Under fee-for-service plans, hospitals are compensated for how much care they provide to patients and usually only face-to-face encounters are counted, rather than screen time. “As we see medicine move from a fee-for-service model where you’re paid to do something, to a risk-based system where you’re paid for quality, there will be a lot more flexibility in how we deliver high quality care,” says Morrison. Despite such challenges, innovative uses of technology in palliative care continue to spring up as the demand for such care grows. “I think technology is a fantastic match for palliative care because you have a specialty that needs to be disseminated incredibly rapidly, a growing population in need, and a shortage of trained physicians,” Morrison explains. “Technology can provide a huge assistance in meeting those needs.”