Tele-palliative care, what might it be?

We often think of telecare services as patient or disease oriented, and indeed many are. For patients in need of palliative support, online communities can reduce the sense of isolation of those experiencing the same form of chronic or debilitating disease. Older community members can quickly assuage the newly diagnosed patient’s chilling sense that they are adrift within a large and uncaring system. That can be an especially important boon for people in small towns who feel uncomfortable sharing questions and fears with people they are likely to meet at the grocery store. Similarly web-based consultation in specialty and subspecialty areas will, in the future, provide primary care physicians and patients with access to up to date protocols on symptom complexes or disease states that are infrequently encountered.

Yet palliative care is significantly different from other forms of care because of its distinct focus on the consequences of illness, not just the specific disease or its treatments. Managing the experience of illness is, in fact, what “condition management” is all about, and is why a patient/family interdisciplinary approach is valuable throughout the course of serious debilitating disease. It is not uncommon, for example, that a recurrently hospitalized CHF patient will continue to pursue aggressive therapy (instead of hospice care), relatively unaware of the care burden such a decision places on a frail spouse. Once discharged, how will such a patient’s increasingly fragile condition be monitored, how will his caregiver be supported so that she does not feel a “failure” when a hospitalization is again necessary, and how will her own functional and health status be affected by this decision? Will an episodic visit-based model of nursing follow-up generate the best outcomes for this patient and his caregiver, or must we consider augmenting those visits with 24/7 specialized “experience” oversight?

As we anticipate the future collision between an unprecedented volume of chronically ill persons and a significantly diminished labor force, it is clear that telecare services must be rapidly developed in order to respond to the numbers of people requiring at-home palliative care as well as the expectations the baby boom cohort may have for support. Patients and family members, as well as the chronically ill patient who lives alone, all stand to benefit from an array of telecare tools: whether its simple web-caming, use of videophones, smart in-home machines monitoring vital signs and blood levels, or telephonic follow-up using algorithms. And what if connections to emergency services, nursing staff, transportation, food service workers (oh those betablockachiinos!), plumbers, volunteers, bankers, etc. were all made possible through a central “condition management” call center? Developing such a system no longer seems optional; it is what is likely going to keep us in our homes as long as we know the blue button on our videophone puts us in touch with that coordinating resource.

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