Telling Their Stories
Broadalbin resident Robert Bickmeyer keeps the small, softbound book alongside the urn carrying his wife’s ashes in his home.
Judy Bickmeyer, who was diagnosed with cancer in 2008, died on Dec. 15 after numerous surgeries on her lungs and liver and nine months of chemotherapy failed to eradicate the disease.
The urn will be buried in the spring, Robert said, but the book – Judy’s Legacy Document, which tells her life story in her own words – will stay with him. The question-and-answer narrative it contains was the result of two interviews conducted by Mountain Valley Hospice volunteer and board member Susan Hathaway Ringland, as part of the hospice’s Dignity Therapy program.
So far, Robert has only been able to read it twice. The emotions it brings up are still too strong for him.
“I’m the type of person where, I don’t want to remember; it always brings back that sadness,” Robert said recently from his home, his voice cracking over the phone. “Like other people have said, [you have to] think back to the happy times and smile about it, but I’m not there yet; it’s only been three months. But it’s something I will definitely keep and hold on to forever, and something that our kids can keep too, along with pictures, to keep that memory of her.”
Judy was one of 12 patients who participated in Dignity Therapy, which Ringland introduced at Mountain Valley Hospice last year. The program is offered to hospice patients facing terminal illnesses, who have six months or less to live.
Ringland was trained in the program in Winnipeg, Canada, by its founder, Harvey Chochinov, a professor of psychiatry at the University of Manitoba and director of the Manitoba Palliative Care Research Unit.
Chochinov founded Dignity Therapy in 2002. The program involves guided interviews between a patient and a trained hospice care provider focused on memories and reflections of the patient’s life. This interview becomes the patient’s Legacy Document, which is professionally printed for the patient and his or her family.
From 2004 to 2008, Chochinov conducted a peer-reviewed, clinical study involving more than 300 terminal patients in Australia, Canada and New York City, comparing the program to two other types of hospice care.
“They found out that the results were profound, in that it increased [patients’] sense of hopefulness,” Ringland said, while sitting with fellow board members and Dignity Therapy volunteers Sue Putman and Rod Correll at Mountain Valley Hospice. “It increased their sense of worth, their place in the world. It decreased depression.”
At Mountain Valley Hospice, the process begins with patient selection. A team from the hospice meets with each patient when they begin hospice care to gather information about the patient, Putman said. If the team feels the patient is a good fit for Dignity Therapy, they will ask the patient if he or she is interested.
“One of the important criteria in terms of adding value to the patient’s life is that the patient is cognitive,” Correll said. “Many of our patients come here and they die very shortly thereafter, and they really aren’t of sufficient soundness of mind to come forth with their life stories.”
After an initial interview explaining the process to the patient, the Dignity Therapy worker will conduct a longer, recorded interview, roughly 30 to 60 minutes, in which the patient tells his or her life story. Patients can speak about anything they wish, for as long as they wish.
The interviewer will guide patients through the interview, focusing in on topics that seem to spark their interest.
“You can look at body language that will tune you into, hey, this guy is passionate about this; let’s follow it along,” Correll said.
The recorded interview is then sent to a transcription service, Transcription Divas in New York City. The Dignity Therapy worker will read the transcript of the interview back to the patient for approval in a third interview.
“It’s almost as though … having their words read to them is more powerful than when they said the words,” Ringland said.
After any changes the patient wants are made, the finished Legacy Document is bound at Miller Printing & Lithographing in Amsterdam.
Correll interviewed two patients last year. One patient died the day after giving her interview. The second, Dr. David Clough, a physician at Nathan Littauer Hospital, eventually left hospice care. His is a rare instance where Dignity Therapy was conducted for a patient who survived his illness.
“I thought it was a good idea because I kind of wanted to put down some of my memories anyway, and that helped me do it,” Clough said recently from his home in Gloversville. “It was a chance for myself to kind of brag about the good things, and accept any that weren’t, but there weren’t that many bad things.”
“David is a very positive person, and I think this helped him become even more [positive],” Correll said. “He wanted this to pass on to his family, I think, and I think it was, for him, an experience.”
According to Ringland, the program is offered at only one other hospice center in the state, the Center for Hospice and Palliative Care at the State University of New York at Buffalo. This year, Ringland hopes to expand the program at Mountain Valley Hospice to palliative care patients who are battling long-term illnesses but are not expected to die within six months.
For surviving family members such as Robert Bickmeyer, the program has provided some sense of comfort.
“I think it’s good for a patient to talk about their life, as long as they’re the type that can do that,” Bickmeyer said. “My wife was pretty strong. I think it is also a good thing for the family. It just helps you to remember their thoughts.”
The hospice workers involved in the program also see positive changes in their patients.
“If this were FDA-approved, well, we’d have a moral responsibility to do this,” Correll said.