The Future of Palliative and Hospice Care Patient-Focused Technology
Dheeksha Senthur
Spring 2021
“A Color stands abroad
On Solitary Fields
That Science cannot overtake
But Human Nature feels…” (Grimes, 2021).
Emily Dickinson, “A Light Exists in Spring”
The air was clean and cold; the misty blue and green lights like liquid neon rippled along the starry Norwegian sky. He reached out to touch those lights--the green reflected glass on his hand, the blue fell like dewdrops. Then, he heard the rivers lapping and felt the waving coldness of the water: he was back in Algonquin Park in Ontario, after watching the aurora borealis in Norway. Fifteen minutes later, Dr. Darrell Johnson, a palliative patient at Carefor Hospice in Cornwall, Ontario, lifted up the virtual reality (VR) headset, his eyes shining (Fagan, 2019).
A former psychology professor at McGill University with a clinical practice, Dr. Johnson had enjoyed spending hours hiking and canoeing in the colorful Algonquin Park (Fagan, 2019). However, in November 2018, Dr. Johnson was diagnosed with glioblastoma, an aggressive, malignant form of brain cancer, and after rounds of surgery, chemotherapy, and radiation, four months later, he had moved to the Carefor Hospice (Fagan, 2019). Unable to walk, and with his speech limited to “yeses” for questions, Dr. Johnson could not visit the park: that was, until VR allowed him to experience its sun and waters again (Fagan, 2019). “‘It’s amazing,’” says Seth, Dr. Johnson’s son, “‘Right now, he’s in complete isolation in his room. And the VR headset will allow him to bring action to his life’” (Fagan, 2019).
With the COVID-19 pandemic, the burgeoning field of telemedicine has been especially imperative in complementing virtual healthcare delivery around the world (Nwosu, 2020). With contactless social interactions being the norm, healthcare technology has provided innovative solutions to not only streamline information for professionals, but to connect patients, loved ones, doctors, and the community to improve quality of care, training, and access to health information (Nwosu, 2020). Therefore, such technology is now reaching homes, hospices, and hospitals, particularly revolutionizing how palliative and hospice care are delivered.
What are Palliative and Hospice Care?
Palliative care is compassionate comfort care that improves the quality of life for patients and families through the prevention and alleviation of suffering associated with life-threatening illnesses (Johnston, 2014). Palliative care involves an interdisciplinary team of healthcare professionals (HCPs) under the discretion of a physician providing relief from physical symptoms and addressing the mental and emotional stresses associated with a life-threatening or terminal illness for the patient and their family (VITAS Healthcare, n.d.). Palliative care can be curative or comfort care at any stage of the illness, and its costs--from visits to prescription charges--vary (VITAS Healthcare, n.d.).
In contrast, hospice care is compassionate comfort care where patients facing a terminal illness with a prognosis of six months or less seek end-of-life care; hospice care does not have a curative intent (VITAS Healthcare, n.d.). Hospice care allows access to a variety of resources, such as 24/7 access to care, nursing, grief support, pharmaceuticals, and other services determined by the hospice agency, which are completely covered by Medicare, Medicaid, or private insurance (VITAS Healthcare, n.d.).
While palliative care is delivered at hospitals, hospice care can be delivered at home or hospice residences, nursing homes, assisted living facilities, and more (VITAS Healthcare, n.d.). Both forms of care can overlap: for example, Dr. Johnson is a palliative hospice care patient.
Traditional Care and its Pitfalls
Prior to the efforts of leveraging technology for palliative and hospice care, hospice agencies would hold regular, in-person, interdisciplinary team (IDT) meetings, where members of various disciplines--nursing, social work, spiritual care, etc.--would organize hospice care plans for patients and families (Demiris, 2013). Patients and families are welcome to join, but because of factors such as geographic distance, patient health, and caregiving demands, they are mostly absent from these meetings (Demiris, 2013). While most of the 1.5 million Americans in hospice care are cared for by informal caregivers, family and friends from home, hospice care under Medicare mandates IDT meetings for all patients; however, due to communication between patient, family, and staff being difficult, hospice care plans are not effectively conveyed (Demiris, 2013). Within professionals, dialogue is often limited with a lack of synchronization: clinicians, as well as physicians, have to wait for a call back from a colleague or a specialist (Parker, 2019). Similarly, low-cost technology such as landline videophones with video and audio obscurities in hospices further exacerbate communication (Demiris, 2013). Families of residents in hospice buildings also have trouble visiting due to weather, road closures, or other commitments, and the resident’s health prevents them from being a part of family events, weddings, childbirths, or simply traveling to places on their bucket list (Interim HealthCare Inc., n.d.).
Figure 1: A Summary of all Hospice Care Information
The Present: A Changing Virtual Landscape
However, in recent years, new technology is being implemented for palliative care patients, hospice care patients, and healthcare professionals (HCPs), particularly wireless videoconferencing and virtual reality (VR) in hospices and hospitals (Interim HealthCare Inc., n.d.). Videoconferencing technology, using phones and computers, allows access to the Internet and video calls from Skype or other platforms, granting patients the ability to spend time with family and friends without the obstacles of travel and cost (Childress, 2019). Patients can be a part of family events through livestreaming and can call a care-provider at the click of a button (Interim HealthCare Inc., n.d.).
Videoconferences are also more informative than phone conversations, since hospice and palliative patients from home and rural areas can have virtual visits with physicians, who are able to screen health problems and monitor symptoms for palliative patients through eye contact and body language (Johnston, 2014). However, these experiences depend on the functionality of the technology and the training of the staff; they are also more effective when the HCPs have a relationship with patients and caregivers, and the patients trusted them, thus sharing more information about their illness experiences with them (Johnston, 2014). Teleconferencing also facilitates better timely communication between patients, families, hospice caregivers, and doctors; hospice providers can ask doctors how to better help patients, and providers are able to explain the condition to the family better (Johnston, 2014).
With videoconferences, virtual reality is also becoming integrated into care. VR, a pixelated simulation that recreates a three-dimensional environment with the use of electronic devices, is being used at Providence St. Joseph’s Health TrinityKids Care to help terminally-ill children in hospitals explore space, battle robots, and swim with whales (Parker, 2019). It has also helped people achieve dreams on their bucket list, such as a patient in a wheelchair riding a horse, and helped provide an escape from the loneliness of their rooms, such as for Dr. Johnson at the Carefor Hospice (Fagan, 2019).
Hospice care providers are also using VR: for example, at the Hospice of Southern Maine at the “Clay Lab,” hospice providers experience a simulation of Clay’s, a 66-year-old veteran with stage IV, incurable lung cancer, perspective, helping to foster empathy for such patients’ life experiences (Childress, 2019). Consequently, videoconferences and VR provide not only social, but also educational benefits (Nwosu, 2020).
The Future: AI and 5G Therapies?
Videoconferencing and VR are only the beginning of far-reaching technological changes. Hospices have already started to implement electronic medical records (EMR) to improve workflows and have partnered with technology companies to implement cloud-based Artificial Intelligence (AI) systems (Parker, 2019). For example, Stanford Hospital is pioneering a deep learning application that predicts life expectancies of patients, thus helping physicians to refer them to palliative or hospice care (Yedinak, 2019). Northwestern University is conducting a clinical trial to bring “virtual conversation assistants” to hospice patients, where patients can have conversations, watch stories, and care for their spiritual needs with a virtual assistant, a character in the application (Yedinak, 2019). These forms of predictive analytics from AI, statistical patient data to inform future care plans, help tailor treatment plans and provide patients with a comfortable quality of life (Mathew, 2020).
The possibility of 5G therapies is also on the horizon. VITAS Healthcare, a provider of end-of-life care, and AT&T are collaborating to develop 5G virtual reality systems to reduce pain and chronic anxiety among hospice patients (Parker, 2019). The first module is intended to soothe patients by having them wear a special headset and walk through tranquil scenes provided by the headset, such as a bubbling stream (Parker, 2019). The second module is intended to examine how mobile networks can support the 5G technology since most hospice patients are at home (Parker, 2019).
Wrapping Up
While technology has the potential to transform healthcare, its implementation also brings up questions. The expense of adopting new technology, the training staff require, data privacy, and a lack of returns to investors for company investments, leading to reduced investment in such technology, could delay its application for years (Parker, 2019). The philosophical questions of replacing human experiences with simulations, of immersing ourselves in a hyperreality that our consciousnesses are unable to distinguish from reality, and reducing relationships to a two-dimensional screen are also questions that hover over the technology’s prospects. Even with such questions, it is apparent that healthcare technology will stand the test of time; despite its emerging challenges, there is always hope for the future, a light that science cannot overtake, but human nature feels.
References
Childress, D. (2019, November 16). Technology Changes Hospice Care. LeadingAge.
https://www.leadingage.org/cast/technology-changes-hospice-care.
Demiris, G., Parker Oliver, D., Kruse, R. L., & Wittenberg-Lyles, E. (2013). Telehealth group interactions in the hospice setting: assessing technical quality across platforms.
Telemedicine journal and e-health: the official journal of the American Telemedicine
Association, 19(4), 235–240. https://doi.org/10.1089/tmj.2012.0185
Fagan, L. (2019, December 30). How VR is Letting Palliative Patients 'Complete their Bucket list'. CBC. https://www.cbc.ca/news/canada/ottawa/health-virtual-reality-palliative-hospice-health-care-1.5395933.
Grimes, L.S., (2021). Emily Dickinson's "A Light exists in Spring.” Owlcation - Education.
https://owlcation.com/humanities/Emily-Dickinsons-A-Light-exists-in-Spring.
Interim HealthCare Inc (n.d.). How technology can improve hospice care for patients and caregivers. Interim HealthCare.
Johnston, B. M. (2014, November 18). Palliative Home-based technology from a practitioner's perspective: benefits and disadvantages. Dovepress.
Mathew, V. (2020, October 7). How Hospices are Using Technology Today. Muse Healthcare.
https://www.musehc.com/post/how-hospices-are-using-technology-today.
Nwosu, A. C. (2020, May 26). Improving Palliative Care Through Digital Health Technology. Blog | BMJ Supportive & Palliative Care. https://blogs.bmj.com/spcare/2020/05/26/improving-palliative-care-through-digital-health-technology/.
Parker, J. (2019, April 19). Tech Reshaping Hospice Care. Hospice News.
https://hospicenews.com/2019/04/18/tech-reshaping-hospice-care/.
Parker, J. (2019, February 19). VITAS and AT&T Exploring Virtual Reality Technology in
Hospice Care. Hospice News.
VITAS Healthcare (n.d.). Hospice vs. Palliative Care: What's the Difference?
Yedinak, J. (2019, March 20). A.I. Helps Shape the Future of Hospice Care. Hospice News.
https://hospicenews.com/2019/03/06/a-i-helps-shape-the-future-of-hospice-care%EF%BB%BF/.