When all medical avenues have been traveled and a person enters end-of-life hospice care, it is often felt that nothing is left to do before death’s inevitable arrival. For Tulsa Schweitzer Fellow Cassie McGough, however, there remains a vital mission yet to undertake: to help a person “die well.” (If the name Cassie McGough rings a bell, it might be because you encountered her in a previous story about her use of augmentative and alternative communication to help people facing a variety of challenges speak.)
The concept of a “good death” is ancient and shared across many cultures. McGough has given it a new incarnation through what she calls Project Legacy. Currently, McGough is both a Schweitzer Fellow and a master’s student in The University of Tulsa’s Department of Communication Sciences & Disorders. Since April 2019, she has been deploying the practice of “guided autobiography” to empower those who are approaching death to gain a sense of calm. She has been doing this work at Clarehouse, a hospice in Tulsa that bills itself as a “community home for dying people” regardless of economic means.
“Cassie’s project and her personal attention to Clarehouse guests and families provided a gift to our organization that will be sustainable in the years to come,” said Cynthia Outlaw, the organization’s support services director and McGough’s site mentor. “Her passion for helping our guests live fully the days they have left fits perfectly with our mission.”
The past in perspective
Guided autobiography goes by many names, McGough explained: “life review, reminiscence therapy, even a good ol’ chinwag. It can be done with anyone and by anyone, but it has specific benefits for individuals who are facing death.” At the heart of the practice are questions designed to evoke memories. Examples include “Who is someone who has been exceptionally kind to you?”, “What was one of your best decisions?” and “Could you tell me about a time you came to someone’s rescue?”
“This is not so much a conversation,” said McGough. “Rather, it’s a practice in deep listening. You slow down, focus on the moment and try to enable a person to unlock their memories so that they can experience the preciousness of the life they lived and feelings of genuine connection to other people.”
For McGough, the ultimate goal of Project Legacy is “to provide dying individuals with a sense of peace by taking them deeper into their lives, through difficult and pleasant times alike.” But the benefits of guided autobiography extend outward to other people. “I’ve seen friends, daughters, grandsons and spouses learn something new about their loved one. That new knowledge provides comfort after the person has died.”
An early start
The seeds of Project Legacy were planted when McGough was a child accompanying her mother who worked as a nurse in a nursing home. “I have memories of roaming the halls and common areas talking and playing with the residents,” McGough recalled. “This was my mom’s way of ensuring I would have intergenerational experiences and that I would grow up seeing older people as complete individuals with full lives.” McGough’s mother also initiated a Resident of the Month program, for which McGough and her sister interviewed residents and their families.
As she grew older, however, McGough began to realize the extent of negative feelings many people have about nursing homes, assisted living, the elderly and aging in general. “I wanted to use the Schweitzer Fellowship as an opportunity to fight against ageism and give a voice to the elderly and the dying,” she said. “It has been a rare privilege to be present as a person closes their eyes and contemplates an answer to one of my questions, to watch as they are transported to another time, to listen as they smile and say, ‘I haven’t thought about that in a long time.’”
Learning and growing along the way
When asked about challenges associated with Project Legacy, McGough immediately put her finger on “active listening.” At first, she noted, “I would want to jump in or fill silences. I would want to relate people’s stories to my own. I would be tempted to change the subject if it became too intense.” Over time, however, McGough developed the ability to be comfortable with silence. “I learned how best to invite people to share their truth.”
But even before beginning a conversation, McGough had to steel herself to the encounters about to happen. “I would stand in front of closed doors for 10 to 15 seconds before knocking,” she recalled. “I was afraid of feeling like an intruder or an unwelcome foreign object.” Again, within about three months, that fear dissolved and McGough began to trust herself and to settle into her new role as autobiographer.
“A big breakthrough happened when I realized I actually didn’t have to be the one to ask all the questions. Like so many solutions after the thought, it seemed so obvious and simple,” she laughed. McGough’s solution entailed empowering the family and friends of a dying person to ask questions. First, she would explain the science behind Project Legacy, then give them permission to ask questions of their loved one and, finally, offer tips for active listening and asking as well as provide her cultivated list of questions.
A sustainable initiative
According to the executive director of Clarehouse, Kelley Scott, McGough’s Schweitzer Fellowship enterprise “offered people who are dying, and those who love them, opportunities for reconciliation and connection that created its own unique healing.”
While McGough’s work with Clarehouse concluded in April, she ensured that Project Legacy’s healing benefits would not cease with her departure. For those who want to develop their skills in guided autobiography, Clarehouse has made available a list of McGough’s questions and helpful advice.
A central component of that sustainability is a series of training videos McGough recorded explaining the system for future volunteers and interns. In addition, Clarehouse staff have set up Zoom meetings between McGough and volunteers so she can explain the project in detail and answer questions for people interested in beginning the work.
McGough also designed a deck of cards composed of questions she has found to be the most rewarding. These will be placed in each room at Clarehouse. Finally, because of COVID-19, McGough and the Clarehouse team plan to post videos on Facebook encouraging people to ask questions of their loved ones in, as she put it, “to promote genuine human connection and remind people that this doesn’t have to be some serious or daunting task.”
McGough does not underestimate the initial awkwardness of asking such questions. “But once people get into the groove and work together to create an accepting space in which to allow themselves to be vulnerable with trusted loved ones,” she noted, “such feelings are gradually replaced by excitement.”
The Albert Schweitzer Fellowship is a 12-month health leadership program for Tulsa-area graduate and professional degree students from any discipline. The fellowship exists to address Tulsa’s vast health disparities in two ways: by piloting immediate solutions through fellows’ projects and by developing leaders who have the confidence, skills and networks to address these disparities for the long haul. Fellows receive a $2,000 stipend. If you are interested in becoming a Tulsa Schweitzer Fellow, visit us online or send an email to rachel-gold@utulsa.edu.
To hear McGough and the other Schweitzer Fellows from cohort 4 share highlights of their community health projects and Fellowship year, tune in for the Fellowship’s end-of-year digital Celebration of Service on Wednesday, May 6, at 7:00 p.m. CST.