The question-and-answer exercise, more impressionistic in design and goal than the mere accumulation of resume facts, is crafted to allow dying patients the ability to convey not just what they did, but who they were.
What are you most proud of? ...
Tell me when you felt most alive ...
What have you learned about life that would want to pass along to others? ...
To be sure, these patients/interviewees are dying, which is why they are being treated at home or in-house at Mountain Valley Hospice. But the interviews provide hope and purpose, affording people an avenue to provide perspectives on their own ebbing lives that can be handed down through generations.
The hospice on the outskirts of Gloversville touts itself as one of only two in the state that provides patients with clinically affirmed dignity therapy, shown in studies to help patients and their families navigate the end-of-life journey. (The other is in Buffalo.) Developed after research in Canada by Dr. Harvey Max Chochinov, the concept is founded on lessening the anxiety associated with illness, and has gained traction in recent years.
In dignity therapy, caregivers present patients a series of questions that attempt to draw out philosophies, key memories, relationships and feelings. The mining of responses offers reassurance and closure for patients yearning to leave this coil with a sense of accomplishment, as well as ensuring an accurate depiction of who they were as a person.
“What we are attempting to do is grasp moments of memories that elicit an emotional response,” said Susan Hathaway-Ringland, a hospice board member who underwent dignity therapy training under Chochinov in 2012 and volunteers to interview subjects. “The efficacy of dignity therapy is found in identifying the patient’s core self.”
After an interview is completed and transcribed, a legacy document is compiled and, if approved by the patient, put into a small book. There is no cost to the patient (unless they want more than two copies). Mountain Valley Hospice has done more than a dozen of these legacy documents since 2013, and plans to offer the program to those receiving palliative care.
“They have something tangible to give them a greater sense of who the person was,” Hathaway-Ringland said, “What has surprised me the most is the depth people will go to discuss what really matters to them.”
Dominic Papa has stories from his 96 years. Lots of stories. About his years in the business, and his competitive bridge days, and learning the game all over again with braille cards after going blind in his early 80s.
“We come from a big Italian family,” said his son, John Papa of Mayfield. “Sitting around and telling stories is a big deal.”
John Papa said his father avidly took part in the process, and the son believes it greatly improved his attitude and quality of life. “That’s all he talked about for a while,” John Papa said. “It really lifted his spirits.” The interviews also proved beneficial to the rest of the family.
“I’ve heard many of his stories a lot of times. I can’t tell them the way he told them,” the son said. “And every once in awhile, he tells a story I hadn’t heard.”
“It affects families ... in a positive and peaceful way,” Hathaway-Ringland added.
The stories she has heard have ranged from poignant to lamenting, profound to hysterical.
“I did one with a woman who was hilarious,” she said. “I had to put down the recorder every four minutes because I was laughing so hard I couldn’t hear her.”
These discussions, these stories, are all as different as the people being interviewed, with one exception: Impending death is not a topic. These patients want to talk about their lives, not their demise.