by Stephen Leon
To outsiders, it might look like Patricia Dalton Fennell leads a few separate lives. In science, she’s a clinician, therapist, researcher, and published expert on the understanding and treatment of chronic illness. In the arts, she’s a jazz musician and producer. In service, she works in restorative justice, cares for dying patients and their families, and treats survivors of trauma. But throughout her “careers,” Fennell has found that the worlds frequently collide, and that the skills she has honed in one field have proven surprisingly applicable to the others. Science projects often resemble design projects, and solutions to artistic quandaries often benefit from scientific structure. Or as she puts it: “The same kind of ‘aha’ that happens to you in science, is the kind of ‘aha’ that happens in the arts.”
Fennell was a hospice worker in the mid- to late-’80s, during what she calls “the Camelot years” of the profession. The modern hospice movement was relatively young, and energized by pioneers like Cicely Saunders and Elisabeth Kubler Ross, the field began to attract workers who were passionate about caring for the dying. They gave “tremendous” care, remembers Fennell, “and it occurred to me, if we can treat the dying this well, why can’t we treat the living this well? Why can’t we treat the chronically ill this way?”
She began to develop models to improve the care given to chronically ill patients, the training of those providing the care, and the education and awareness of family members and others in regular contact with the patient. Fennell’s work culminated in a new model for care based on the four phases she identified of what patients — and the people around them — experience during chronic illness. She published three books on the subject, including Managing Chronic Illness Using the Four-Phase Treatment Approach (Wiley, 2003), which are used as textbooks all over the world.
In 1989, she founded Albany Health Management Associates, initially to provide counseling, therapy, and case-management services to people seeking help understanding and adjusting to the realities of their chronic conditions, and integrating their new-found awareness into their daily lives. Fennell’s clinical work soon led her into research: “As my ideas took shape,” she says, “I worked with colleagues worldwide designing empirical tests to begin validating what clinical practice had shown to be effective.” Empirical testing continued, “where the findings indicated that the model is robust.”
In addition to her consulting and educational services in chronic illness and related fields, Fennell — an Oxford scholar who wrote chapters on chronic illness for Oxford University Press — serves as a senior investigator on scientific and medical research studies (including an ongoing study on scleroderma), and makes frequent presentations at conferences. Beginning in 2018, Fennell will be testing “IMPACT,” a new chronic-illness training assessment tool, with medical residents at the University of Michigan Medical School.
And her expertise brought her worlds together. “The way the arts snuck in to the AHMA house,” she says, “is when I was asked to be a clinical expert on a documentary called I Remember Me” — about the experience of patients, families, and clinicians around what was then called “chronic fatigue syndrome.” She ended up helping edit the documentary, and soon she was blending the arts and sciences regularly. While doing management coaching work for a local restaurant (“It’s all therapy”), she began working with musicians who were playing there, and wound up producing a CD of “cooking tunes” with the chef.
Fennell (using the professional name Patricia Dalton) recently produced a CD for the highly regarded Jazz trumpeter Chris Pasin, Baby It’s Cold Outside: Chris Pasin and Friends, which has received outstanding reviews from the international music community. And on any given weekend, Fennell can be found at various venues from New Orleans to Oxford, U.K., and throughout the Northeast, singing Latin, R&B, and tunes from the Great American Songbook.
As AHMA’s mission expands, Fennell continues to advance her long-term goals of developing new work with scholars, scientists, artists, and service activists. Together, they develop new treatments and advance the science, and make art and music while raising awareness. “We have to provide care,” she says, “for those who can’t care for themselves — that’s service. We have to discover and treat, to improve life and prevent suffering — that’s clinical science. And we have to make art, make beauty — that’s what makes life worth living.”
