“We comfort each other by meeting each other
where we are in the present moment.”1
Image entitled, “WC creature” painted by Thom Fortson
The writing of clinical narratives to document, process, represent and communicate about bedside work is integral to the education, clinical practice and ongoing professional growth of music-thanatologists. Though talk during a vigil is often minimal, all musical encounters with patients are grounded in dialogue.2 Stories are being told, selves are being formed and transformed. In a bedside vigil this often occurs at a deep, unspoken level within the patient3 and through the music of the music-thanatologist. Written narratives are vehicles to bring the stories of patients’ dying into shape and form, completing the circle of our entry into the dying process with music. Therefore music-thanatology can be called a narrative practice; our work falls within the scope of narrative medicine.
Narrative medicine is a relatively new discipline in the practice of western medicine, in which physicians and other health care workers are trained to listen carefully for the patient’s story as told by the patient, and to record it in writing. These narratives are key to comprehending and treating the whole person who is seeking care.4 A key component of training in narrative medicine is practice in listening in a new way to what patients say, so as to fully hear their stories. Diagnoses and treatment plans are created based on how the patient views, and what the patient says, about his or her illness, as well as physical assessment, laboratory tests and traditional aspects of medical practice. The rise of illness narratives in the literature in the past 25 years attests to the desire of patients to tell their stories and be heard, and to the importance of these writings to our cultural understanding of illness and dying. Dr. Rita Charon has written the definitive (and only) text on narrative medicine,5 growing out of her ongoing work of training doctors and other healthcare workers in the skills of narrative practice. Her work in narratology as well as medicine has much to contribute to our understanding of the narrative aspects of music-thanatology. In this article, I will relate the concepts outlined in Dr. Charon’s writing to the practice of clinical narrative writing in music-thanatology. My goal is to validate and encourage the narrative aspects of music-thanatology practice.
“How can we incorporate into the world of the basic word what lies outside language?”6
Narratology is a field of study arising in the 1980’s out of a philosophical and literary emphasis on understanding the stories of human beings. Though it has its detractors7, it represents a shift away from the purely scientific/rational approach to knowledge, particularly when it involves knowledge of other people, and toward a more holistic, even metaphorical outlook.8 Its premise is the understanding that we are constantly creating ourselves by telling our stories, that the self is not a fixed entity but is constantly evolving, up to the end of our life.9 Narrative medicine finds its roots in narratology as well as in phenomenology which is the study of actual phenomena (rather than their interpretation) as guides to truth and understanding.10
Music-thanatology fits in this tradition. At the bedside of someone who is dying, stories are still being told, selves are being formed and transformed, most often at a deep and unspoken level. Dialogue between music-thanatologists and patients is essentially non-verbal except for sung words; it occurs through body language, facial expression, physical states such as respiratory patterns, and the music of harp and voice. When words are spoken, they have great importance and are noted, but conversation is always secondary to non-verbal or musical dialogue.
What then is narrative practice? According to Dr. Charon, it is a practice that develops narrative knowledge. She writes, “Narrative knowledge provides one person with a rich, resonant grasp of another person’s situation as it unfolds in time…Unlike scientific knowledge, which tries to discover things about the natural world that are universally true, or at least appear to be true to any observer, narrative knowledge enables one individual to understand particular events befalling another individual, not as an instance of something that is universally true but as a singular and meaningful situation.11
To illustrate, one might refer to music in mixolydian mode as generally bright, uplifting and warming. Since the harmonic structure remains entirely within major tonality, and the melody resolves to the fifth tone of the major scale, this may be true in many cases. This generalized analysis of how the fixed musical qualities of mixolydian mode may be perceived by a listener gives music-thanatologists a starting place: an understanding of how mixolydian mode is often described by its hearers. We could even do a survey and find out how most people respond when listening to mixolydian mode. This, however, would not inform us about how mixolydian mode is received by an individual at any one time.
Narrative knowledge would be gained by observing one individual’s interactions and responses to music in mixolydian mode at a particular time and place. It reflects other influences, physical realities, beliefs and conditions that color the experience of this music. For example: “As I sing the Latin words of an unmetered Gregorian chant in mixolydian mode at Mrs. Smith’s side, she begins shivering, then she begins to cry.”12 This is an observation of the patient during a particular musical delivery, which may or may not have been in response to the music. Mixolydian mode cannot be separated from all the other elements at play in the moment. The air conditioner may be set too high and the patient feels cold. The tears may be an expression of the patient feeling safe enough to allow emotions to flow. Or they may be a response to the absence of meter, internal movement, or the intimacy of receiving music in close proximity. No interpretation is necessary. The event is simply observed and recorded as the truth of the patient’s experience at the time the music is offered. If we stop at a preconceived interpretation, either of musical offerings or the patient’s responses, we may miss other clues to the patient’s being in their dying, their forming and transforming. We may miss an opportunity to have more genuine musical dialogue with the patient.
Observation and recording of clinical data in an organized format is a starting place, an opportunity to focus on the actual physical, mental and spiritual state of the patient in the moment, rather than work from preconceptions or assumptions. Charon gives an example of a physician reading a chest x-ray in a specified format and order. If a physician does not follow a routine order and organization of observations, she or he might go for the obvious signs of pneumonia and perhaps miss the metastatic lesion on the 6th rib.13 In the act of organization and recording of observations, a more accurate picture of the patient’s condition emerges. By making this a part of routine practice, Charon asserts that one can fine-tune one’s ability in “close reading” of patients. In addition to the information we receive from the medical chart, referring notes and clinical observations, music-thanatologists need to ask:
1. What is different about this disease (or dying, or death) as it manifests in this particular patient?
2. What is unique about this patient as a host of this disease, or as a dying person?
3. What is the shape and character of the musical dialogue with this particular person at this particular time? What does the patient express? How does the music support that expression?
This kind of questioning and observation can lead beyond the general to valid narrative knowledge of the patient. In a pre-vigil assessment, you might find a diagnosis of COPD and, based on your previous experience with COPD patients, assume that this patient will feel anxious if you are positioned too close to the bedside. Past experience may guide you to initially set up the harp some distance from the bedside. Meanwhile the patient is actually reaching out for physical contact with a subtle gesture. If you skip the reading of the pulse, you may miss this important clue to the patient’s need. In effective bedside work, generalizations or assumptions give way to deep listening to this patient in this moment. Perhaps a cappella singing while holding the patient’s hand would be a better beginning prescriptive choice than sitting far away behind the harp. In the moment, you are letting go of preconceptions and letting the patient tell his or her story. Reflecting on the vigil later, or writing about it, may help you see this dynamic more clearly and make more supportive prescriptive choices in the future.
“...[N]arrative knowledge enables a person [to] understand the plight of another by participating in his or her story with complex skills of imagination, interpretation and recognition.” 14
Significant changes, variations, surprises and inconsistencies contribute to the unfolding narrative of a particular vigil with a particular patient. Charon believes narrative writing is a way to gain insight into the unique meaning of each person’s experience, by bringing forward these very inconsistencies and surprises. We have one hour, more or less, in the presence of a dying person to enter into and accompany them in their living and dying. We may not have verbal dialogue with them at all. However, in this hour of musical dialogue, the patient may be reliving a lifetime of experience or, within a liminal state, be creating a dialogue with eternity. We know we can witness this and support it. We listen and “speak” to their experience through our music.
An effective, professional music-thanatology practice demands some of the same skills that narrative knowledge and writing contribute to other arenas of narrative medicine:15
Empathetic and effective care of individual patients:
By developing the capacity for attention, we learn that to give attention is to bear witness to the patient in their plight; it is a beginning place, and can be complex, demanding and difficult to achieve. It requires an emptying of self in order to receive the meaning of another. The “carer”16 learns to actively mute inner distractions and to concentrate the full power of presence on the patient. “To perform healing of another, one has to empty oneself of thought, distractions and goals and to donate oneself to the other.”17 Attention is corporal, “mutually embodied.”18 This is what music-thanatology does so thoroughly via our physical and spiritual involvement. We do this directly in singing and creating music on the harp, not asserting our own voice, but reflecting back to the patient what they are saying. This act has been called generative empathy. “Generative empathy may be defined as the inner experience of sharing in and comprehending the momentary psychological state of another person… experiencing in some fashion the feelings of another person.”19 It is a practice of learning to hear the body and the self telling of illness and the experience of dying. It also involves developing the capacity for intersubjectivity or “co-creative action between the music thanatologist and the patient.”20
Candid reflection on the work:
In the process of reflection on the vigil, the music thanatologist is learning to hear all that patients words, silences, metaphors, allusions and body language are telling us. Is there agreement or disagreement between the body and the self of the patient?21 Between your own thoughts and your intuition? What you were thinking in the moment and what you perceive about it now?
The ability to make prescriptive musical choices that support patients in the best possible way in their unique moment and situation can be learned, and refreshed, through writing and reflection on the vigil experience. Narrative writers may find increasing flexibility, adaptability and responsiveness to individuals and changing needs of patients. As human beings, we tend to fall into patterns of action, a tendency we need to be aware of in our own commitment to be fresh and new for each patient. This is in essence the ethic of our work- the patient’s needs, wants, and desires are foremost, not ours. If we are struggling to maintain this focus, writing can help regain it.
Discourse about the work:
Committing our thoughts and observations to writing promotes professional discourse both within the field of music-thanatology and with others outside our field of practice. Because we practice in many distant places, often without other music-thanatologists with whom to discuss particulars of our work on a regular basis, sharing our writing about our experiences is an important way to nourish our own ongoing growth and enrich the practice of others. As new music-thanatologists enter the field, narrative writing will be an effective tool in helping us all to continue to develop the work and nurture each other. Other professional colleagues often can gain a better grasp on what it is we actually do through reading our narratives. In a local hospice practice, the nursing staff had very little understanding or appreciation for vigil work until I began submitting clinical narratives for inclusion in the hospice chart. Only then did an understanding of the vigil beyond the idea of entertainment begin to form. This despite presentations, explanations, and nurses attending vigils—in short, everything I had done as usual to explain and validate the work.
STARTING POINTS: THOUGHTS ON WRITING NARRATIVES
“Open your mind as widely as possible, then signs and hints of almost imperceptible fineness… will bring you into the presence of a human being unlike any other. You must be capable not only of great fineness of perception, but of great boldness of imagination.”22
The act of reflection and recording of the vigil in narrative form gives music-thanatologists an opportunity to step outside the experience and gain fresh insight—which can then inform future encounters with the same patient or others. There are universal building blocks of narrative that can be helpful in approaching the writing of clinical narratives. First of all, in the language of literature, “narrative deals with experience, not propositions.”23 Clinical narratives are representations of what actually was experienced by the patient, loved ones and music-thanatologist during the vigil. Narratives are stories that have a time frame, characters (certain people involved in the events), a narrator (the teller of the story who has a relationship with the subject), a plot (or idea) and a point (or focus).24 Let’s look at these elements of clinical narratives in more detail:
A narrative has a beginning, middle and end. It is limited to a specific time frame and to how the patient is experiencing time within that frame. Ill and dying patients are often in liminal time rather than strict “chronos”, or clock time. The hour with you may seem like a lifetime to the patient, or a fleeting moment. What indicators of the patient’s experience of time do you observe? How does that correspond, or interact, with your and others’ sense of time?25
Clinical narratives focus on this particular event as it occurs with this particular person or people. It is a telling of what we see (hear, touch or smell). It speaks to the development of intersubjectivity, the ability of the “I” or ego to surrender its agenda to the experience of the patient.
The unique voice of the narrator:
My story will differ in the telling of the same events from your story. However, the creative process must be congruent with what was actually observed by those present. If your experience was that the patient died during the vigil and yet you also report ending vital signs, you must explain your experience of the death, your definition of it. The clinical data must support the narrative.
The plot is the unique story being told, the “idea.”26 We may resist the thought that our clinical narratives contain plot, but they do. They are stories of this particular patient in this particular time period. They are stories with a structure, not a run-on list of facts. Charon describes plot as being like a protein: a string of amino acids by itself cannot do anything. It needs a shape to work. She gives hemoglobin for an example: it is arranged curled in on itself, looped in a way to hold the iron molecule inside, then, it can carry oxygen.27 Henry James wrote of plot, “The idea permeates and penetrates it, informs and animates it, so that every word and every punctuation-point contribute directly to that expression…”28 Gaining a sense of plot often will help us see the discrete events of a vigil in a more meaningful way.
A point, or focus:
A narrative approach to vigil work involves listening for a “wide and deep and varied” story of this patient’s [living and dying].29 There is a continual narrative going on between the patient and the music-thanatologist, patient and family, staff and patient. Observation and telling of the patient’s story go beyond the obvious (the clinical data, chart notes, statements by referral sources, family and staff, initial impressions, specific thematic material played or sung). Within the vigil, a central theme or gesture emerges, a way of making meaning of the experience. Often elements and signs take on meaning only as you write about them later. Writing the narrative helps us bring all the disparate elements into a coherent whole. And by bringing the whole into focus, we hone our abilities to pick up these clues and give them credence more quickly in future vigils. “The clinical listener has to be alert at all times for the gleam of self-telling, to pick up the thread offered- sometimes so very casually or tentatively- by the patient who is prepared to begin telling the story of a life.”30
In writing a narrative, first of all, begin with the clinical data. What does it tell you as a whole? Look at the musical themes. What do they say? See if you can find the point where the story begins. What event best opens the dialogue between the patient and the music? (You may not know this till you have written everything else.) How does the vigil develop? Where or when does it end? It could be when the music stops, when you leave the room, or an hour later when you get a phone call that the patient has died.
It is unrealistic to think that practicing music-thanatologists will record a written narrative for every vigil they attend. However, you may find your practice renewed by writing about those patients with whom you will have ongoing contact, or vigils that left you puzzling about what was really taking place. You may decide to set aside a certain amount of time each week for writing, or give yourself a goal of one narrative a month, or whatever seems doable for you. Incorporating this part of the work in a contract or work agreement will help you make and honor a commitment to this very important part of your professional competence. The creative process of writing is very individual. I use the following steps as a guide, though yours may be quite different.
1. Record clinical data and musical details: thematic material used, musical elements, prescriptive thinking, and significant observations of the patient during the vigil. Do this recording as soon after the vigil as possible.
2. Free-form journal writing to honor and record the reactions from within yourself, your emotions, thoughts, sensations. For-your-eyes-only writing. This often helps to uncover things that are not present to you consciously. This is most helpful in the 24 hours following the vigil.
4. Construct your narrative using the elements of time, singularity, plot, voice, and point, holding a particular listener in mind. Sometimes, it may feel right to narrate from the patient’s point of view, with you as the listener.
5. As you write, have a harp available and space in which to sing and play. Recapturing the essence of the music as offered in the vigil will often clarify what was happening in ways that don’t become clear otherwise
6. If you have time, let the writing “sit” for a day or two, then go back to it with fresh eyes and ask, what does this narrative say? What is the central idea? Do the data support it? What is the point? Often there is a process of elimination of unnecessary material, rather than adding anything to it.
VIGIL NARRATIVE EXAMPLE
The following narrative was written in June of 2008. Names have been changed to protect privacy.
“Ralph” is an 87 year old man who has been diagnosed with a slow growing abdominal tumor. Living alone, he has been eating poorly and has lost a lot of weight. Though he had increasing pain, he did not use pain medications until started on hospice care. He was referred to hospice a week ago following an undiagnosed cardiac event. In the past 24 hours he has slipped into a coma according to his daughter, and death is expected imminently. His respirations are 32 per minute, shallow and regular. There is some retraction with each breath, and he does not appear to be exchanging much air. His radial pulse is 134, weak and irregular. Nurse’s notes reported a lot of fluid in his lungs yesterday, with respiratory distress. 02 is at 5l/min with little relief of tachypnea. Prescriptively, a short, unmetered chant in minor tonality may be a way to enter the vigil space and support Ralph’s ineffective breaths, potentising the effect of medications for pain relief.
At the door, Ralph’s daughter Jane seemed surprised and somewhat upset to see me. She has lost track of time and a sense of the world around her, except for the presence of imminent death. Her face is puffy, with eyes teary. She is skeptical about whether music would help her father, and seems to want privacy. However, she welcomes the offer of support and simple listening. The patient is lying in a hospital bed in the dining room adjacent to the living room, the tall windows facing a high cliff with the ocean below. Soon Jane consents to the music, asking that I be quiet and gentle, and to not sit too close for fear the music will disturb Ralph. I assure her she can let me know at any time if she feels the music is not helpful, or it is simply time for me to leave. Her husband sits unmoving in an adjacent room, turning only to look briefly as his wife and I talk. Tuning is very quick and quiet while they sit in the living room and wait. They decline an invitation to move chairs to the bedside. I leave plenty of space between the harp and the bed, so that they can move to Ralph’s side if they choose.
The home is very still, with only the sound of Ralph’s steady labored breathing. A light fog is covering the hills between the house and the ocean, but the waves are faintly visible out the windows. Ralph’s new hospital bed lies with him facing the ocean, though his eyes are closed and he does not open them. He has not been able to eat or drink normally for several months, and his flesh is loose over his bones. How ironic that he is lying where the dining room table stood two days ago. Surrounded by beauty and finally relieved of pain, he has shifted from the need for physical nourishment, except for breath, and possibly touch. Ralph’s mouth is wide open, dry and unmoving. His skin is warm to the touch and respirations are rapid and very shallow, with almost no air being exchanged. His chest retracts slightly with each breath, although there is no gurgling with respirations today. Ralph does not have a visible response to being spoken to or touched as the Vigil begins. His pulse is very rapid and thready at the wrist.
The music begins with very quiet, gentle toning on harp in rhythm with Ralph’s breath, evolving into a sung melody using “ah”. The harp accompanies with blocked fifths as a strong 3/4 rhythm is established. The music breathes with him, expanding into fuller harmonies as my voice holds a steady flow of warm, open tone. Gradually Ralph’s respirations slow over about 10 minutes’ time. Effort becomes easier, and Jane quietly moves a chair to the bedside and sits close to him. The words of the blessing are interspersed with extended voweltones. Jane is silently crying, and nods in gratitude as Ralph appears to rest deeply in the music.
After a period of silence in which Ralph’s respirations remain steady and effortless, a lullaby is offered, with sung text. The fog creeping up the hillside is reflected in the words, and seems to surround him in a loving and inviting way. There is no coldness in the room, only increasing uncertainty and anticipation as Ralph prepares to exit. Thirds sung in harmony with the melody on harp are offered to support the deep heart connection between Jane and her father. Arpeggios in interlude with the melody use the full range of the harp to honor and celebrate this time of great transition.
In a period of extended silence, the steady rhythm of Ralph’s respirations begins to include occasional skipped breaths. Jane is attentive and holds his hand, continuing to weep very quietly. His breath continues very lightly. An unmetered prayer in mixolydian mode begins on harp, offered with very simple accompaniment and many repeated phrases. The spacious music is accompanied by a sung open “ah” vowel at times, weaving beauty in and around Ralph and his daughter. She smiles in the following silence and states, “He never was much of a hand-holder.” She seems pleased to have this moment of connection with him that demands nothing of her.
The daylight seems to have waned considerably, even though it is before noon. The sky is darkening, and fog thickening. Lightness and heavenly air are granted a place in the room, with a three-fold prayer for mercy in major tonality exploring the upper ranges of the harp. Alternating with a brief sung prayer, harp and voice continue to support and wait as Ralph hovers between this world and the next. As silence once again is offered, Jane draws back from Ralph and emerges into present time, thanking me and indicating she wants this time alone with him now. Ralph continues to breathe steadily but very lightly, the skipped breaths coming more frequently. His pulse is no longer palpable and forehead has cooled considerably. A quiet peace lies around him and envelops him as Jane sits in attendance, waiting and watching.
Note: Ralph made his transitus two hours after the vigil ended.
“Developing capacity for attention, Narrative Training may give [healthcare workers] the means to hear patients more accurately and comprehend their situation more fully (and also may help them in the search for personal meaning).” 31
Each writer’s process may be different; you may need to experiment to find what works best for you to allow the narrative to emerge. When you make room for narrative writing in your practice, you may find your energy for the work renewed, your awareness in the vigil setting sharpened, and your ability to communicate your work to others improved. I hope I have challenged us all to make room for narrative writing in our practice of music-thanatology, and to continue to develop our skill in narrative medicine for the benefit of those whom we serve in their time of dying.