Call Me Maybe: What Do We still Need To Learn About Telepalliative Care?

Many of us have vivid memories of abruptly learning to provide telepalliative care, defined as palliative care provided via communication technologies, in March 2020. While there was interest prior to the COVID-19 pandemic, restrictions on in person visits necessitated scrambling to adopt telemedicine overnight. One of us (M.B.) remembers spending hours in a tiny windowless office beside a palliative care fellow who was learning to conduct high stakes family meetings via video and wondering if this was an acceptable way to have a serious conversation.

The verdict is in—telepalliative care is not going anywhere. Patients say they like it, the data are encouraging, and insurers paying for it. Despite this we have questions about how exactly it should be used, what its limitations are and how to integrate into face to face (F2F) care.

The case for telemedicine is strong and growing. Studies have demonstrated that telemedicine for patients with heart failure, stroke, and substance use disorder is associated with equal or improved health outcomes and at lower cost than in-person care.^1,2 The same is true in specialty palliative care. Jang et al. in “Tele-Assisted Home-Based Palliative Care Reduces Healthcare Costs for Terminal Cancer Patients” examined the impact of home-based palliative care provided primarily via telemedicine for patients with cancer in Taiwan. ³ Care included 24-hour emergency consultation services and instant messaging on smartphones in settings where F2F care is not possible. Patients receiving tele-assisted palliative care near the end of life were more likely to avoid hospitalization and had reduced health care costs compared to patients who received usual care. This study shows how adding telepalliative care to usual care can expand access for patients.

The study adds to a growing body of evidence in support of telepalliative care provided as a distinct entity outside of F2F care. Greer et al. presented data at the American Society of Clinical Oncology Annual Meeting in 2024 from a 22 site study of 1250 patients with newly diagnosed non-small cell lung cancer randomized to monthly palliative care visits conducted either via video or in person in the outpatient clinic. ⁴ Patient reported quality of life scores at study week 24 were equivalent in the two groups, suggesting that early palliative care is effective virtually. On a larger scale, a systematic review of telepalliative care studies suggests association with improvements in symptomatic and psychological outcomes for patients and caregivers, although there is too little data to draw broad conclusions. ⁵ Regardless, patients and caregivers value its convenience. ⁶ For patients who are highly symptomatic, have limited mobility, or are experiencing financial stressors, receiving palliative care virtually increases access to specialty palliative care.

Before we move to telepalliative care becoming the norm, we have concerns and questions. First, while the convenience of telepalliative care for patients is clear, for the clinicians performing visits, there is uncertainty: what are the parts of a physical exam that are needed to safely assess and manage the patient’s symptoms? In a qualitative study of palliative care team members providing teleconsultation to hospitalized cancer patients early in the COVID-19 pandemic, clinicians reported distress trying to manage new and severe symptoms without being physically present and having limited ability to perform a full physical exam. ⁷ In a single site telemedicine learning needs assessment of Hospice and Palliative Medicine (HPM) fellows, participants identified the need to learn how to do a virtual physical exam as a top learning priority. ⁸ This skill has been identified as priority for learners across specialties in Graduate Medical Education, along with the related skill of knowing when to transition to F2F care when a patient’s status is inappropriate for telemedicine. ⁹ What does this mean for specialty palliative care? In other specialties, specific conditions have been identified that are most suitable for telemedicine. ¹⁰ We need data in our field to help develop a shared mental model about when to insist that a patient be seen in person.

Second, telemedicine may have benefits when conducting serious illness conversations. Family members and clinicians who may be unable to join an in-person meeting can join virtually from multiple geographic locations. Patients and caregivers report feeling equally “heard and understood” by their palliative care physicians via virtual visits compared to F2F care. ¹¹ Clinicians appear to be able to identify and respond to patient emotions which sounds promising. ¹² And yet, our experience feels different when it is virtual and we worry that our measures are not finely tuned enough to reveal the difference. Palliative care fellows also say responding to emotion in virtual encounters is a priority learning need. ⁸ Psychology research shows that people are better able to interpret emotions correctly across voice-only communication (i.e., telephone) than video together with voice making us wonder about how to balance F2F, phones, and video. ¹³ In another example, virtual serious illness conversations seem like they are attended by larger groups of family members than might otherwise join a meeting. How do we manage the dynamics of a large group when we cannot use visual cues and the screen does not allow our colleagues to help us out? Some people use chats to help the medical team stay on the same page, and we are not sure how to balance this and the interference with our attention. We need to better understand how virtual communication differs from in person communication and how to adapt skills to the virtual environment.

Third, we wonder about expectations for professionalism in a virtual visit. Seeing a patient in their living room can add perspective about their life, and family members may have more flexibility to join a patient in a telehealth visit than F2F. Telepalliative care also is more convenient for clinicians who can practice from anywhere. But sometimes increased flexibility can lead to unexpected scenarios and a surprising level of informality. Colleagues have told us about visits where a caregiver shows up for the telepalliative visit without the patient available, not having known the patient was supposed to be part of the conversation. Or the patient who shows up in the grocery store for a conversation that involves serious news. HPM fellows identified “maintaining professionalism” due to informality and uncertain boundaries as a telemedicine-specific learning need. ⁸ These new standards need to be developed. For example, a recent study found that patients and caregivers want to retain the professional behaviors expected in a F2F visit. ¹⁴ Clinicians need to think about and negotiate the behaviors we expect of the patient and family.

Finally, we need to better understand clinicians’ satisfaction with providing telepalliative care. A palliative care physician writing in the early days of pandemic described missing the rituals and humanity of in person care and concern about what is lost in the transition. ¹⁵ This does not account for the frustrations of new technologies not working, or the problems our patients have with them. We wonder about the impact on burnout and job satisfaction. A post pandemic study of primary care physicians found that 80% of physicians would prefer to do a small share or none of care via telemedicine in the future, and the majority thought that telemedicine was inferior to F2F care. ¹⁶ Quotes from two studies of clinician distress and telepalliative care delivery highlight the concern: “doing palliative care with my hands tied behind my back” and “it took away and stripped a part of myself.” ¹⁷ How do we ensure that clinicians can provide high quality care in a sustainable, meaningful way?

Telepalliative care is here to stay. We have evidence that it is well received by patients and associated with positive clinical outcomes. We have the opportunity now, outside of the crisis of the early days of pandemic, to study and better understand the differences between our work in person and over a screen so that we can provide patients with high quality palliative care.