Where data falls short
Rincon says data analytics also lack the ability to take into account the emotional and physical aspects of death and dying. Harrington agrees, adding that it is an interesting time to discuss technology in end-of-life care because she is seeing a growth in narrative medicine in response to the shortcomings of the digital world.
“The focus is on the experience of illness, in this case end of life, the meaning of which can be lost in hard data stores,” Harrington says. “The lesson here is to balance technology and data analytics with the larger picture of the patient and family experience.”
How one processes end-of-life discussions is also influenced by emotional, psycho-social, and spiritual aspects, Rincon says. Although survival rates and statistics may help some in the decision-making process, the same information may create false hope for others. “There are also those that seem to defy statistics, living much longer than predicted. These outliers may cause caregivers, patients, and families to lose trust in predictive models derived from data analytics,” she says.
Data analytics may provide some use in providing individualized care and interventions in end-of-life care, Harrington says, but research is also conducted in controlled environments and doesn’t often take into account the human element. To truly apply data analytics to sensitive end-of-life care discussions and planning, there has to be a full understanding of the source of the data and how it was compiled, and the unique needs of the patient and their family, she says.
These concerns underscore Munger’s advice that end-of-life discussions happen sooner, and with a provider who has a relationship with the patient and family. “This is where having a relationship with a patient and family really pays off because when I take care of a family, I’ve had other challenging conversations that are delicate,” he says. “If you have someone that’s trusted and that you’ve shared things with before, now we can sit down with good data and statistics and have that relationship because I’ve become a trusted voice.”