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 Husband and wife Tony Pederson and Margaret Pasquesi set up their harp at the bedside of a patient nearing life's end. They check his vital signs and begin playing their instruments; they may also hum or sing melodically. Surrounded by the family, they tailor their music in response to the patient's pulse, breathing pattern and temperature.
This prescriptive music utilized to alleviate the physical pain and emotional stress of the dying is known as music-thanatology.
According to the Music-Thanatology Association International (MTAI), music-thanatology is a professional field within the broader subspecialty of palliative care and a musical/clinical modality that unites music and medicine in end-of-life care. MTAI (www.mtai.org)is the independent professional and certifying organization for the field worldwide.
Illinois native Therese Schroeder-Sheker developed the concept of music-thanatology about 30 years ago while working in a nursing home when she was a music student. One day, she noticed the soothing effect of her singing on an elderly man who was dying alone. She named the discipline based on the Greek "thanatos," meaning death.
Music-thanatologists' sole instruments are harp and voice. The harp is ideal for its portability, pure tone and simple sound. It also allows the musician to play chords along with melody and harmony and offers a wide range of musical options.
Pederson and Pasquesi, both certified as CM-Th, practice in the Chicago area for Midwest Palliative & Hospice CareCenter in Glenview, IL, and are among the 80 certified music-thanatologists in the world. The couple does not always work side by side, but they each average two to three vigils per day, 5 days a week. They completed an intensive 2-year curriculum in music, medicine and liberal arts to graduate from the Chalice of Repose Project School of Music-Thanatology (chaliceofrepose.org) founded by Schroeder-Sheker and now located in Mt. Angel, OR.
In addition to music classes in harp, composition, theory and reading, Pederson and Pasquesi had a rigorous medical training including clinical discussions, anatomy, physiology, pharmacology of pain management, psychology and end-of-life care. Their liberal arts education comprised anthropology of music and medicine, history of dying rituals, theology and spirituality.
The Music Vigil
Pederson and Pasquesi are usually paged by a social worker, nurse or physician. Sometimes the call comes directly from the family who has heard of them since they have been practicing for 7 years at Midwest Palliative & Hospice CareCenter (www.carecenter.org). Prior to seeing the patient, the music-thanatologists obtain the medical chart from the caregiver. Then, they introduce themselves to the family and explain the nature of their work. They check the heartbeat and temperature of the patient and begin to play. Not all family members are open to their intervention but often the most reluctant are won over by the impact of the music.
A music vigil lasts between 30 minutes to 1 hour and is interspersed with moments of silence. Pasquesi related how once she lost track of time and played for 2 hours: "In ritual space, time shifts. You go through ordinary time to extraordinary time." The patient may fall asleep, lose consciousness, or die; frequently the death occurs a few days later.
The music is not intuitive, nor based on a formula or a known repertoire, nor is it intended for entertainment. Rather, as described by MTAI, "it allows the patient to enter into the unbinding process of letting go in his or her own very personal way." Also, the music-thanatologist stays away from any tunes associated with memories to encourage the focus on the present moment.
"We adapt our music moment by moment to the physiological cues of the patient. Conscious or unconscious, the patient is always in charge of the musical direction and we respond to what the patient needs. There is no recipe," explained Pederson and Pasquesi.
For a patient in an advanced stage of Alzheimer's disease, the music-thanatologist may operate with a limited number of cords, a repetitive short air, and a simple cycling between silence and sound. In other circumstances, the length and shape of a musical phrase correspond to the patient's breath.
Pederson recalled a vigil when he played three long phrases to keep in synch with his patient, who was struggling with three breaths a minute. When the patient's breath slowed down to two per minute, the music became more spacious. When the patient took one breath a minute, Pederson could not believe it. But he explained, "My job was to accompany him, not to believe what was happening. His force of will overpowered what was physically possible."
After 3 minutes of stillness, the patient attempted to take a final breath. Pederson kept playing, focused on the patient, until the end of his life.
Sacred Space
Music-thanatologists create a sacred space where extraordinary events occur.
Once, Pederson witnessed a father and son who had not spoken in 15 years embracing towards the end of their wife and mother's vigil.
Margaret shared a story of two sisters arguing about funeral arrangements over their mother's deathbed. Ten minutes into the vigil, the sisters quieted down and became present. "I provided a context and modeled a behavior," Pasquesi said to explain this attitude shift.
Music-thanatology gives the family permission to focus on what they need to in order to grieve.
Sometimes the music allows the family to fix their attention on something else to release tension. Pasquesi recalled a vigil during which family members admired a rainbow from the bedroom window.
Positive Impact
Midwest Palliative & Hospice CareCenter finds immense value in music-thanatology, a service they offer at no cost to patient and family. Pederson and Pasquesi are among their salaried employees, and the hospice is not reimbursed by Medicare or insurance companies for providing the service.
In the U. S., end-of-life rituals are scarce. Americans are not accustomed to seeing someone die.
"Music-thanatology brings a new spiritual dimension to the dying process," said Mary K. Sheehan, MSN, MBA, RN, president and chief executive officer of the Glenview center. "It is transformative for everybody present." She refers to music-thanatology as "an amazing gift to the family, an event they will remember in a positive manner."
Music-thanatology eases a person's transition out of life. It relieves physical pain, facilitates sleeping, alleviates anxiety, anger and sadness while appeasing the family and the medical staff. At the end of their intervention, the music-thanatologists check the patient's pulse and notice a softening of the breathing and heartbeat.
Sheehan said the facility has also seen a reduction in the use of pain and delirium medication since the inception of the program. Pederson and Pasquesi have been collecting data about the clinical effects of music-thanatology and plan to release a study this fall.
Sheehan also pointed to another benefit of music-thanatology: It facilitates education about palliative care. By talking about music, an approachable subject, it helps deliver the message to community members about end-of-life care, which is typically an uncomfortable topic.
"Hospice care is interdisciplinary, and music-thanatology is a wonderful addition to the care that nurses bring. It is not a substitute, but a beautiful way to practice nursing," Sheehan concluded.
Rachel Christophe Baker is a freelance writer and also serves as the director of educational programs at the Hektoen Institute of Medicine in Chicago.
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