What follows is an exchange that we (Noah and Kristen) had over email regarding two aspects of our work which caused us to ponder the limits of the work.
Neurological Irritability and Terminal Agitation
As another case presentation wraps up at our monthly palliative care committee meeting, the recurring question is raised: “What other services could this child benefit from?” We just sat through a case presentation of a 1-year-old who presented with one of the most difficult (in my opinion) symptoms to manage—neurological irritability. The question is almost rhetorical, as no one really does seem to know what else to do.
For those unfamiliar with the term, neurological irritability typically occurs in infants who are neurologically devastated and worsens over the first year. The theory is similar to neuropathy, where the nerves are firing spontaneously. This results in seemingly unending irritability which does not resolve with traditional soothing techniques, including (typically) music/music therapy. These babies have had poor brain development, and typically exhibit repetitive and unchanging crying, dysautonomia, and muscle spasms. A variety of medications are often trialed, along with positioning, vibration, music therapy, Reiki, massage, etc. You name it, we try it. But think about that—your baby cries endlessly until they fall asleep and does not respond to any of your attempts to comfort them.
This really resonates with me, Kristen, and reminds of my work with terminal agitation. Terminal agitation emerges during imminent death, and is an intense restlessness frequently marked by virulent (sometimes violent) efforts to get out of bed, strained calls for “help”, and an inability to be soothed. While the majority of hospice patients will not experience it, for the minority that do it is a highly distressing experience for them, their loved ones, and any present healthcare professionals. So distressing is the experience that a particular focal point for me while educating new patients and their families is how to identify terminal agitation and what steps to take when it begins. We want to break the initial cycles of that agitation before it evolves into something more intense and unmanageable.
Interesting parallel, Noah. I had never considered the commonalities of both of these issues. The impact both have can be highly distressing to caregivers (families and staff). Let’s consider, for a moment, the ways in which parents typically establish bonds with their children. Early on, there is a reciprocity that is established through the caregiver—care receiver dyad whereby the caregiver learns to interpret and respond to the baby’s cues, and the baby responds to those caregiving efforts to indicate that the caregiver has successfully met their needs. Thus, bonds are established and strengthened. The caregiver also becomes more secure in their abilities to care for their baby and doesn’t necessarily need the reinforcement of these positive responses every time, as they can feel confident that they will eventually figure out how to soothe their baby. What an amazing circle of communication this is! Now, let’s consider the description of the baby with neurological irritability—the baby who is either asleep or appears to be writhing in pain. Imagine the difficulty this begins to pose over time.
Right – when this degree of distress manifests, it impacts loved ones and becomes an interpersonal issue in addition to an intrapersonal one. Nobody wishes to die experiencing so much dissonance within and around them, and no caregiver wishes to bear witness to their loved one, who has already struggled with so much, struggle even further. Compounding this caregiver stress is their bearing witness to the struggles of hospice professionals attempting to treat it. That is perhaps the most disheartening and frustrating element of terminal agitation: we experience the “what” but do not know the “why”. Kathy Murphy once wisely intoned to me that the only people who know what it’s like to die are dead, and here that barrier looms large. It’s impossible to determine what exactly causes terminal agitation given that those who have experienced it are unable to share, so we’re left with a lot of conjecture.
Biomedical explanations range the gamut, from infections, to unmanaged wounds, to a natural restlessness brought about by organs shutting down. No true point of origin is known, and accordingly pharmacological treatment largely focuses on administration of anti-anxiety and anti-psychotic psychotropics. The goal of these medical interventions is not to alleviate the agitation but to override it under a mountain of sedation. I find this is troubling as I understand terminal agitation as an existential condition far more than a physiological one.
For me, terminal agitation is an existential condition to a much larger extent than a physiological one. Terminal agitation does not discriminate, occurring for both the most anxious and the most actualized of patients. It’s point of occurrence during imminent death, that critical 24-72 hour window of time when the patient is actively transitioning into death, is key. It suggests that during this time when the patient is readying him/herself to let go of this life and move onto what comes next, their unresolved content (e.g., past traumas, fractured interpersonal patterns, etc.) rises to the surface to essentially say “Hey, what about me?” For some, the re-introduction of that content into their consciousness hits hard and furious, and at a time when their psychic resources are compromised, a primal desire to “fix” that unresolved content can take place. At such times I believe terminal agitation sets in.
What Can We Do?
It’s the inability for any of us to “fix” the situation and resolve the symptoms that make it so challenging. In the facility I work for, we care for a large number of children who are minimally responsive. These children receive round-the-clock care from nurses and therapists skilled at interpreting the subtle cues they present and responding accordingly. Even a child who seems to have almost no discernable responses can experience comfort through a nurse positioning them perfectly, strengthening the feeling of success that the nurse caregiver experiences in providing care. Each time we admit a child who is experiencing neurological irritability, there seems to be a silent groan. There is a collective effort to do everything we can, get every service involved, rack our brains and spend endless amounts of time trying to soothe this baby with typically minimal results. Eventually, the baby grows a bit older and moves into a more minimally responsive, less irritable state. But for that year or so, the toll the irritability takes on the staff is palpable. The longer the baby stays, the more the phrase “oh [name] cries all the time; that’s just the way he is.” is uttered. This is the resignation to the fact that, no matter how much we tried, we just couldn’t help this baby. That is very difficult to acknowledge.
You’re calling it for what it is, Kristen: sometimes, no matter the strengths of our craft, the skills of our practice, or the intuitiveness of music as a healing medium and experience, there’s very little we can do to impact meaningful and substantive positive change. For hospice music therapists, our charge is to help people more fully and intentionally engage with that unresolved content, to interact with it in the interest of constructing a resolution and/or closure that helps facilitate movement through this life into the next. Are we able to do that with somebody so overwhelmed with their internal experience and so out-of-reach from their surrounding environment? I can’t imagine how. Music, as a relational phenomenon, is predicated on reciprocity and shared experience, and there is little chance of those integral facets taking root here. So when I’m called out to a terminal agitation event, what tools do I have at my disposal?
Yet, it seems like others have that belief that relief would come from either the music, the music therapist, or both. Inevitably, someone from music therapy is called to assess the baby. Surely the baby WILL respond to music! Although I wish this were true, often there is honestly no discernable difference. However, that certainly doesn’t mean that music therapy is not necessary. I may argue that it is vital. What becomes important when music therapy is not actually helping is the perception that music therapy is helping. If you’re thinking “Emperor’s New Clothes”, you are not far off. Think about this… baby cried all the time; no one can help; helpless feelings turn to apathy/lack of bonding/diminished investment/compassion fatigue/etc. What if music therapy could break that cycle simply by altering the staff’s perception of the baby’s experience? Could that impact compassion fatigue? Could that promote bonding? Possibly.
No matter how many times I work in this environment, I continue to find it exhausting. The baby’s crying cycles so I cycle with them in the music. My voice rises and falls and, although I am almost certain that this would have happened in spite of me, the baby eventually falls asleep. The nurses respond so positively. They seem relieved, perhaps even comforted themselves. I also watched a nurse linger in the door with a slight smile as I was singing with the baby. I realize that I am speaking about a half hour compared to an entire day. However, the positive feedback from the nurses continue with each session. They even call to request sessions at times, possibly when they themselves required that musical reprieve.
And the question that arises for me while reading this, Kristen, is what if music therapy is unable to break that cycle? Such an unfair expectation impacts all parties: the clinician (who feels shamed for being unable to help in the way advertised), the caregiver (who feels disgruntled and disappointed that their loved one remains in an uncomfortable state), and, most importantly, the patient (who remains in a distressed state). This is where commonly held assumptions about what music should do and our continued difficulties communicating what music therapy can do are in conflict and creates discord. There are two issues here:
(1) The lack of distinction between music, which is a medium, and music therapy, which is a practice. Given our (generally) poor articulation of music therapy as a practice in end-of-life care, non-music therapists’ poor understanding of this distinction makes sense. And in lieu of that understanding, it’s easy to see how non-music therapists could equate the medium (music) with the practice (music therapy) that employs the medium. When “medium” and “practice” are enmeshed in this way, any assumptions an individual carries with him/her regarding what music should do is projected onto music therapy should do.
(2) Our poor understanding of what music therapy can do with patients experiencing terminal agitation. What’s our role, and what’s the role of the music? What symptoms do we focus on and how? Who do we focus on – the patient or the caregiver(s) – and how do we balance that focus? What theoretical precepts do we draw upon to inform this work? This is a phenomenon we haven’t explored yet, and it leaves us fumbling to conceptualize the clinical process as much as it leaves us questioning what best practices are.
My own practice with the terminally agitated tends to be vocally-centered with supplemental multisensorial interventions. Most sessions, this means I hold a patient’s hand or rub his/her shoulder in rhythm with carefully selected songs sung using varying voice qualities. Song selection involves sequencing into a song cycle centered around musical and lyrical themes. One cycle that I frequently draw upon is:
- Amazing Grace (Traditional)
- Let It Be (The Beatles)
- The River (Garth Brooks)
- Bridge Over Troubled Water (Simon & Garfunkel)
- Come Thou Found (Traditional)
This cycle employs water imagery and themes of passage that assists patients and caregivers to jointly move through this period of imminent death. The voice qualities that I strive for are prayerful (intimate, nurturing, holding) and ministerial (guiding, facilitating). The intensity, timbre, and inflections of each of these qualities are adjusted to attune with the presenting emotional, spiritual, and physical needs in the room at the time.
Likewise, I find myself drawn towards using my voice almost exclusively combined with loving presence and touch. I often use the pediatric massage technique of “resting hands” over or on the baby while improvising or singing precomposed lullabies. Themes I look for are safety, holding, caregiving, love and nurturing. The transition here would be sleep, or hopefully, a quiet alert state.
Where Do We Go From Here?
As noted above, this conversation emerged from an off-the-record discussion between about the limits we have recognized in our practices and how we negotiate those limits in the pursuit of best practices with our patients. Looking back on how this conversation evolved, we recognize that follow-up discussion could focus on either (1) the boundaries of music therapy practice in end-of-life care or (2) work with patients experiencing neurological irritability or terminal agitation.
With that in mind, we invite you to share your thoughts, ideas, and experiences regarding either or both of those topics. In what ways have you questioned the extent to which music therapy can help? Where do you think the constraints of our work are at the end of life or in the spectrum of palliative care? Have you had a time where you wondered if you were really effecting change? When working with neurological irritability or terminal agitation, what approaches have you used? What theoretical constructs have been helpful for you? Please leave a comment and keep the dialogue going!