I began my education in music and end-of-life care nearly twenty years ago, in the fall of 1996. As a music-thanatologist, I play harp and sing to dying patients using a prescriptive process. Rather than playing familiar songs, I use the raw materials of music, such as melody, rhythm, and harmony, to create music that is individually tailored to each patient. During a music vigil, I can adjust the music, moment by moment, to address the patient’s symptoms and needs.
Although the typical music vigil is about half an hour long, I once played a music vigil that lasted several hours. Many family members were in the room and the vigil included music, stories, and conversation. A nurse indicated when she felt the patient was taking her final breaths. The patient died accompanied by her loved ones, music, and attentive medical care.
I noticed the silence that often follows death. The air in the room was calm and still as we all took in the profound truth that one person’s breaths had stopped and one heart no longer beat. This silence was followed by a shift to movement and phone calls, planning and paperwork. The deep time of death ended, and the time on the clock started up again.
Just then, one of the family members said she did not want to talk to anyone and asked me to play the harp. I began to play and watched as she sat by the bed, taking a few more minutes with the person she loved. After a short time she turned to me and said, “It’s OK. I can talk to people now. Thank you.”
Neurosurgeon and writer Paul Kalanithi writes in his memoir, When Breath Becomes Air, that once he was diagnosed with a terminal illness he realized that the physician’s primary role is something far more tender and subtle than an all-out war with illness: “[T]he physician’s duty is not to stave off death or return patients to their old lives, but to take into our arms a patient and family whose lives have disintegrated and work until they can stand back up and face, and make sense of, their own existence.”
The harp music offered this family member a protective space, where, in the face of her grief, she could gather herself together.
Playing harp and singing offers patient care that is not just for the body, but also for the whole person. It is medicine not just for the patient, but also for her loved ones and perhaps even for her physicians. The music can support and accompany everyone as they wait and watch, whether death comes right away, or days or weeks later.
When the sound of the harp replaces the beeps, loudspeaker announcements, and voices from the hall, the music vigil can turn a bustling biomedical setting into a site of deep rest, storytelling, or reflection. The patient and her loved ones can lean back and breathe, trusting the music to hold and rock them. For families who want it, the music can create a comfortable opportunity for final conversations.
For many of us, the topic of death and dying comes up only after a crisis for which we feel ill-prepared. Modern health care settings are unfamiliar places, where it can be difficult to understand what is happening, and what we should say or do. This feeling of not being able to make sense of our experience causes real suffering. But when patients and families acknowledge the process of dying, they can begin the healing work of meaning-making.
Catholic theologian Henri J.M. Nouwen writes in Reaching Out: The Three Movements of the Spiritual Life, “Healing is the humble but also very demanding task of creating and offering a friendly empty space where strangers can reflect on their pain and suffering without fear, and find the confidence that makes them look for new ways right in the center of their confusion.” The music vigil offers that space. It is large enough for sleep, tears, or laughter. There is room for the patient to tell stories or reach out to her loved ones.
In a music vigil, people can rest and reflect without time pressures. The vigil might only be a few minutes, or it might last for several hours. In an age of quick consults from busy providers, the music-thanatologist can wait, watch, and listen with a patient and family, sometimes joining in their laughter and even their tears. Institutions that provide and find funding for music-thanatology do so out of an understanding of its efficacy, and a commitment to excellent patient care at the end of life.
This unhurried companionship is good not only for patients and families, but also for medical staff. When I interviewed physicians and nurses for my book, Music at the End of Life: Easing the Pain and Preparing the Passage, I was surprised to hear them describe music-thanatology as a way to address patients’ unmet needs. One hospice medical director talked about difficult emotions, like angst and emotional pain, that medications can’t possibly address.
“I look at music-thanatology as the thing I fall back on when I know everything else is going to fail,” he told me. A nurse explained it was a “huge relief” to be able to offer music-thanatology to patients “when I don’t know what to do.” Several people I spoke with noted that they called on music-thanatology to help manage symptoms, such as pain and anxiety, without the risks and side effects of medication.
I heard echoes of these feelings of helplessness when I read Being Mortal: Medicine and What Matters in the End by surgeon and writer Atul Gawande. In it, he traces the difficulty that he and many doctors have in knowing what to say or do when it becomes clear that curative treatment is going to fail. Gawande cites a study in which 63 percent of doctors overestimated how long their patients would live.
According to research, he writes, most doctors will tell a patient their cancer is incurable but are less willing to give a clear prognosis, even when asked for one, and over 40 percent of oncologists “admit to offering treatments that they believe are unlikely to work.” Gawande notes that the current patient-doctor relationship is “increasingly miscast in retail terms,” making doctors even less willing to be realistic about patient outcomes.
Gawande acknowledges that “talking about dying is enormously fraught” and that he himself avoided it with his own patients. But in recognizing this problem and trying to do better, Gawande concludes that patients and families cannot be expected to know when—or how—to transition from fighting a disease to planning for the dying process, and they “need doctors and nurses who are willing to have the hard discussions and say what they have seen, who will help people prepare for what is to come—and escape a warehoused oblivion that few really want.” These hard discussions can allow patients to live out their deepest values until the very end of their life.
When a patient is dying, the curative treatment has failed, but medicine itself has not failed. Just as there comes a time in every birth when delivery is imminent, death is its own kind of labor, with its own mysterious timeline. Both birth and death are natural processes that have been heavily impacted by biomedical and technological advances.
While these advances have prolonged and saved many lives when things are going wrong, they have also led to a shift in expertise from helping patient and family through a natural process to asking them to consider a range of heroic interventions.
Women used to labor at home, accompanied by midwives and family members. Dying people used to be cared for at home and, after death, were washed, grieved, and prepared for burial at home. When we do not discuss our wishes for birth or death, either because we are afraid to talk about it or because we believe doctors are the best experts, we give up some deep knowledge that comes from inhabiting our own bodies. We also prevent our loved ones from fully understanding, and having the chance to honor, our most precious values.
Both birth and death require a shift in care, from intervention to letting the body do its work, from the wisdom of the expert to the wisdom of the patient. Both require care that is closer to the accompanying role that a doula can play during birth.
On a summer morning several years ago, I entered the final stages of labor in a hospital bathtub with my husband and doula by my side. As the contractions came and went I thought, When I get out of this tub, I’m going to ask them to take the clocks off the wall. I don’t want to know what time it is. I don’t want to know how long this is going to take. By then, I didn’t care about the date or the time. I didn’t care that I was naked in a bathtub in front of strangers. I didn’t need to be a part of a conversation about my contractions that I could hear in my peripheral awareness.
At the hospital where my son was born, patients have many choices about the type of birth they want. I chose to be cared for by their midwife practice and to hire a doula. When we arrived at the hospital, the nurse who completed my intake took time, then and there, to read my birth plan, so I knew she understood my wishes. No one advocated for pain medication once I stated I did not want any; instead they asked what my plan was for pain management. Even in the final stages, I had choices: about how to position my body, about the temperature of the bathtub water.
Once I climbed out of that tub my son was born too quickly to take the clocks down. But I found that some of the things I’ve learned about the role of values in end-of-life planning were also true here. My specific wishes—to have a lot of privacy and to be involved in any decision-making—were still important. But as they changed, and I cared less about being naked with strangers or participating in conversations, the values that undergirded my wishes remained the same. What I valued most, and what I experienced during my son’s birth, was to feel that I was in good hands. Because of the trust I felt in the people accompanying me, I could allow myself to be carried by the forces of birth without struggling.
What I see in music vigils is that dying patients can also be free from struggle when they know they are in good hands. Music, and a loving presence, is one way to provide the space needed to recognize, and find the courage to face, the movement toward death. Rather than fighting a disease like a battle, we can give the patient time at the end of life to be embraced and carried by her loved ones and also by her physicians, nurses, and other caregivers.
In both birth and death powerful human questions rise up alongside medical phenomena. “What does my life, and the life of our family, mean? Who have I been, and who am I becoming? What must be spoken or finished before I can move on? Where am I going now?”
The answers to these questions do not come from medications or procedures. They come from silence, presence, and love. They come from a gaze, words whispered close to the ear, a hand reaching to hold another hand. When a dying patient is accompanied by beauty and loving caregivers, the clocks can come off the walls and everyone—patient, loved ones, and doctors—can accept the reality of this transition. And, just as when a baby is born, the moment can feel like a profound, human miracle.
Jennifer Hollis is a music-thanatologist, writer, and author of Music at the End of Life: Easing the Pain and Preparing the Passage.