Being diagnosed with a serious condition of any kind can open patients up to feelings of vulnerability as they face their own mortality. And for patients with severe neurological disorders, they must not only contemplate their bodies failing them, but also their minds. That means worrying about also "losing their grasp on their personalities and beliefs — especially their spiritual beliefs," according to Katherine Piderman, Ph.D., who has worked with many patients with neurologic diseases and others who are terminally ill as part of her role as chaplain at Mayo Clinic's Rochester campus.
Dr. Piderman had an idea about how to help those patients share some of the thoughts most precious to them. In 2012, she and other chaplains teamed up with Mayo Clinic researchers Carmen Radecki Breitkopf, Ph.D., Aminah Jatoi, M.D. and Maria Lapid, M.D., to begin a research study called "Hear My Voice." The idea was to give patients a chance to reflect on their lives and pass their stories on to their families — in their own words and their own voice. "We help patients review important life experiences, beliefs and values during an interview with a Mayo Clinic chaplain," Dr. Piderman says.
The interviews are taped, transcribed and edited "for clarity" before being turned into a booklet to be shared with a patient's family. It's all written in first-person, as if the patients themselves were speaking. "We call the booklet a 'Spiritual Legacy' that can be kept private or shared with loved ones or members of the health care team,” Dr. Piderman says.
The booklets are made possible by the "generous help and support" of Mayo Clinic's Division of Media Support Services as well as "several small grants" and "one large gift" from a Mayo Clinic benefactor. "And because of that, we've been able to print 25 booklets for each patient," Dr. Piderman says.
The response, Dr. Piderman tells us, has been "heartwarming" — not only from the patients and families themselves, but from everyone who's helping to make it happen. "The patients have loved it; the caregivers have loved it; the study team has loved it," she says. "And we've found that being involved in the study seems to help with a patient's spiritual well-being and quality of life."
That assessment is clear in a research paper by Dr. Piderman and the research team, in which they talk about the effect the project had on one participant after he was diagnosed with a brain tumor. The study team writes that the patient was left with an "abrupt confrontation" with his mortality that left him wanting to "express his gratitude, love and important values to his family" before his death. And he did that by asking that the following words be included in his booklet: “I’d like my family and others who love me to know that these two sayings have been my mottos: ‘Forgive one another’ and ‘Be a person of integrity.’ I’d also like to leave them with three more words, ‘I love you.’”
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