Well, the hospice care decision aid focus groups happened.We had two groups: the first, a group of patients with advanced chronic conditions who had yet to have a hospice conversation with their doctor; the second, a group of caregivers whose family members had passed away in hospice care.
It was incredible to watch them react to the program. In fact, this is one of my favorite parts of my job – getting to see the immediate feedback and the connection to the end destination of where our programs go. It’s easy to forget why we make the things we make, but in the focus groups, we see the connection of words, art, and technology touching the patient and resonating with them (or not) in a way we don’t typically imagine.
The two stand-outs for me from the groups were Alma* and Robert*. Alma was an older woman with many conditions who now used a cane to get around. She was very frightened by the idea of hospice in the beginning, but her reactions to the program were incredible. We saw her nodding along with the idea of comfort care, raising her eyes at the introduction of a palliative care option, and actually gasping when she found out how much of hospice was covered by insurance. She completely turned around on her opinion of hospice. And though she mentioned she was not yet ready for hospice care, she now felt prepared and comfortable with having the discussion, should that time arrive.
Robert, on the other hand, was a younger man with COPD so severe that he had trouble walking the few blocks from the train station to our offices. He, too, equated hospice with death at the beginning of the viewing. However, by the end of the program, he was practically jumping out of his chair to go meet with a palliative team and kept interjecting the benefits of hospice into the group’s conversation. He was so thrilled to have a program that explained things clearly to him and let him know there are options. Continue Reading »