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The Balance of Mental Health and Medical Health at the End-of-Life

How do we “know” mental illness?

Recently, a client I had been working with since January disappeared for a month with neither warning nor explanation. When he re-appeared, it was discovered he had been in a psychiatric hospital to treat chronic depression recently exacerbated by a month-long medical hospitalization. Upon returning home from that medical hospitalization, he had been unable to regain a sense of self or stability, and ultimately his mental health decompensated.

It was a stark reminder that mental illness is neither cowed nor tamed by advanced medical illness, and that a decline in physical resources and health may provide opportunity for parallel declines in mental/psychic resources and health. Our cultural penchant for infantilizing the elderly or ill with statements of “Oh, he’s so cute!” or “She is such a sweetheart!” perpetuate a belief in an inherent docility to death and dying. This narrative threatens to minimize any continued manifestations of mental illness, placing the already vulnerable at risk of significant decompensation that can rupture any present balance in their daily functioning.

I often consider the well-tread idea of whether mental illness is illness at all. The term assumes pathology even though many with altered thinking, unstable patterns of relating, mood lability, and similar deviations from typical functioning would argue that these features serve vital existential functions of protection, organization, and meaning-making. What we call “maladaptive” they would assert as “atypical” – it is not destructive or harmful, but merely inconsistent with mainstream norms and standards.

I try to assume a balanced perspective founded on several postulations:

  • Every person, regardless of mental health status, maintains cognitive/emotional constructs and defenses that help the individual interact with the self and other in safe, organized ways.
  • Mental illness conflates and distorts these natural intrapsychic processes to compensate for intrapsychic injuries incurred earlier in life requiring significant attention for healing.
  • At times, these conflations and distortions, though in service to the self, will impede routine functioning in society and significantly increase the potential for harm to self or other.

This perspective has evolved while observing mental illness take new shape and assume new tasks over the duration of a disease trajectory. As that trajectory progresses, some questions emerge: What function(s) do the aforementioned constructs assume at the end of life when safety and protection takes on different meaning? The self will always seek protection from the excessive vulnerability that our insecurities make us feel and our environment may force upon us, but what protection can truly be offered and what is truly needed in the face of death?

How we live is a model for how we die

One of my first hospice clients had borderline personality disorder, and my experiences with her have long resonated with me. When working in inpatient psychiatric settings, the raging interpersonal instability, chronic feelings of emptiness, and general want for chaos so marked in the borderlines’ daily and long-term functioning had been a significant challenge. One of my clinical strengths is aligning and joining with clients, but the flipside to that strength is a propensity for enmeshment and boundary loss. My ability to regulate the balance between those extremes has long been an area of continued professional growth, and in those early days at the hospital I found myself frequently manipulated by such clients.

So you can imagine my surprise when this client presented without the storm and fury surrounding her. One song that we continually returned to was the traditional spiritual “Make Me a Channel of Your Peace”. With each re-creation, she would comment and reflect on the themes of letting go and giving oneself to a larger idea or belief in the pursuit of harmony. Initially, I believed this to be the final reflections of a self-actualized individual.

What I had overlooked, however, was the pursuit and longing interwoven in the lyrics. The song is a plea for peace, not a reflection on how it was achieved. This was not apparent to me until I sat bedside with her while she was actively dying. At that time, the bitterness in her narratives about the struggles in her life, once so lovingly packaged in pre-scripted platitudes, rose to the surface and it became apparent that these conflicts were far from resolved.

In that session, I was improvising guitar and vocal music to match her respirations and affective state. Every 5-7 minutes her eyes would close, her respirations would become longer, and just as it appeared she was ready to die she would suddenly fling herself up in bed with great force, look around the room with a wild look to her eyes, and then slowly begin to transition back into a state of rest. This cycle happened more times than I could count. It dawned on me how unready she was to transition, that for all our processing about peace what we had overlooked was that there was no peace to be found.

The individual with BPD lives with repetitive pattern of chaos to be played out over the short- or long-term. The corresponding responses to those patterns assist the individual to survive amidst the chaos rather than move through and resolve it. When one knows only chaos and conflict, peace is not only unattainable – it simply does not exist. Here, my client was unable to “let go” because she simply did not know any other way to “be” other than to fight for a functional existence amidst conflict. Challenged with the greatest conflict we engage in – life versus death – she recognized the futility of that struggle, but was intent on dying with the same dogged persistence with which she lived.

What’s my role? What’s the music’s role?

Early on I recognized that the unresolved traumas of a life will inevitably breathe fresh air in that individual’s final chapter, and I would be challenged to provide a space for that trauma to be acknowledged while remaining contained and not thoroughly explored. When previously compartmentalized traumas move to the forefront of our consciousness that’s when (I believe) terminal agitation sets in. Terminal agitation is a state of agitation while actively dying that is marked by attempts to get out of bed, shouted pleas for “Help!”, and other such behaviors that indicate distress. To my knowledge no biomedical explanations for terminal agitation have been found as of yet – my belief is that it is a result of attempts on the part of the dying person to fix the unfixed, to right the wrong, to make peace where there is chaos. The activation or re-enactment of earlier traumas can certainly place the individual at a higher risk for such agitation.

So what do we do as music therapists with patients with mental illness? I have ideas, but they feel like conjecture since we have yet to conduct hospice music therapy research so focused on certain clinical groups. Deborah Salmon’s psychospiritual model comes to mind, wherein we move from surface-to-depth in a flexible and non-patterned manner with patients. Motivational interviewing often uses the term “evoke”, and within Salmon’s model we first evoke the cognitive/emotive/spiritual content lying underneath the surface and then work to form a healing container around that evoked content. We take cues from our patients as to what they wish to do with that content and utilize our own clinical expertise in that collaborative work. It is nuanced psychotherapeutic work that demands of the music therapist advanced clinical skills and clinical supervision.

Perhaps the greatest step we can take right now is acknowledging that mental illness does not fade away in the face of old age or advanced medical illness, and that regardless of how aware we may or may not be of it, mental illness remains a powerful and influential force in the therapeutic setting at the end-of-life. As mental illness continues to be diagnosed and treated at increasing rates, and a new generation of active combat veterans begin to age, this is an area of clinical growth we are challenged to meet with development of theory and practice.

Have you had experiences such as these in your hospice or palliative care work? Please feel free to share in the comments below, or share your ideas about work in this area.

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1 thought on “The Balance of Mental Health and Medical Health at the End-of-Life”

  1. I just got around to reading this thoughtful post about working with people living with mental health struggles. Thank you. And so glad my own musings on understanding our work were meaningful to you. Best wishes, Deborah

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