Families often lack resources and knowledge to navigate a fragmented health care system, particularly at the end of life. New artificial intelligence tools are paving ways for improved family caregiving education and support.
Transitioning from curative treatment to comfort care can be a jarring experience for patients and their families, according to Lorenz Valdez, founder of the startup LifeGuide. Family caregivers often do not receive sufficient education or support when a loved one becomes terminally ill, which can result in poor outcomes and significant gaps of unmet need.
Emerging AI-powered technologies have the potential to provide families with more accessible avenues of accurate information about hospice, Valdez said. However, these systems need to be designed with careful consideration and meaningful human insight.
“I saw a big gap where families are lost in the health system,” Valdez told Hospice News. “They don’t know what to ask, who to call or where to go for care. AI can close the access gap where there is currently no support and a timely access problem, not a clinical one. Caregiving anxiety is a real thing when people go into hospice. A purpose-built AI system can help hospices improve quality and efficiency.”
LifeGuide is an AI app designed to address unmet needs among family caregivers. Unveiled in April, the technology is currently in development and inching toward launching in app stores.
LifeGuide’s features include stage-by-stage navigation of a terminal illness prognosis and decline, a family coordination hub, document vault and care visit preparation and guidance. The app also features a 2AM Caregiver Companion. Powered by Google Gemini, the AI-based companion tool provides guidance on hospice logistics, requirements, documentation and care coordination, among other end-of-life care and death topics.
LifeGuide is in part informed by clinical insight, regulatory standards and privacy guidelines. Among those included in the app’s development has been Valdez’ wife, a nurse with experience in hospice and pediatric care. Valdez comes from a family of nurses and caregivers, and he has experienced the impacts of lagging resources growing up on a small rural island in Hawaii. Death was an integral part of his upbringing in his Filipino community, he said.
Hospices have increasingly used AI to help improve staffing and operational workflows, clinical documentation and revenue cycle management. Untapped areas of artificial intelligence exist when it comes to timely access and better family caregiver support, Valdez indicated. AI has the potential to better empower and inform the general public, particularly underserved populations.
Important for hospice providers to understand are the risk factors involved with quickly evolving AI tools, according to Valdez. These technologies should not be used to replace clinical guidance and must also be informed by updated health care and data privacy regulations. Additionally, AI family caregiving navigation tools should not be driven by skewed data results that steer consumers toward certain companies over others based on algorithms that fall outside of the regulated quality reporting systems.
“AI is moving fast. Every single day it changes,” Valdez said. “You can’t keep up, but [it’s] being able to adapt in this space that is going to be important. It’s being able to understand the capabilities of what AI can do and what you shouldn’t do with AI. The biggest thing is that it’s not a substitute for clinical judgement [and] making sure that everything is compliant.”
Other AI-driven platforms have surfaced in recent years that are designed to improve access and family caregiving support. One example is Central Health Intelligence.ai, which provides clinical decision-making support in advance care planning. The AI’s algorithms help to identify patient declines sooner to drive earlier goals-of-care conversations.
AI tools have a significant potential to improve hospice awareness while also risking increased misconceptions about these services without adequate human oversight. This is according to Dr. Brian Haas, national medical director of hospice at Ascend Health. Haas is also founder of the hospice AI documentation platform Hospice Intelligence.
Many patients have short hospice stays that last only a few days, Haas said. Families often indicate that they wish they had known about the services sooner in their loved ones’ illness trajectories. AI has the ability to move end-of-life discussions further upstream, he indicated.
“Any tool that can improve awareness and potential access to hospice would be huge,” Haas told Hospice News. “It’s the ability to streamline that process so that a loved one, a caregiver feels empowered, because they are then making decisions from a place of calm and not panic. At the same time, we need these tools to be able to provide education to patients and family members in a way that is digestible to understand and they can ask abstract, convoluted questions.”
Family caregiving navigation tools are “much needed” as swelling aging populations drive up demand for home-based support, Haas said. More families are entering the caregiver arena without sufficient access to respite or emotional, psychosocial or practical support. The market for responsibly-built technologies that address these challenges is “massive,” but also is the need to ensure accurate AI algorithms and consumer safety guardrails, he stated.
Patient safety and privacy should be at the forefront of AI-powered family caregiving navigation tools, Haas said. These technologies also need to have built-in detection systems around program integrity that help families understand the differences between legitimate and fraudulent hospice providers.
“The concern for fraud is something that needs to be well-addressed,” Haas said. “I think AI can really help with this if you have an AI tool that recognizes that hospice inherently is a god system. It can help to narrow how a hospice is bad or fraudulent versus good.”
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