The “Palliative Soul”: Music Therapy, End of Life Care, and Humanizing the Patient

Palliative care in Spain

The overarching practice of palliative care is based on physical suffering’s connection with existential, emotional, psychosocial, and spiritual distress (Brennan, 2017). According to Spirituality in the Clinic by the Spanish Society of Palliative Care (SECPAL), the philosophy of palliative care holds to the belief that care is only adequate if it attends to multiple dimensions of a person’s needs (Benito, Barbero, & Dones, 2014). While palliative care is not synonymous with end-of-life care, which is the focus of this study, the philosophy of palliative care informs much of end-of-life care.

Discussions of death and dying also have deep roots in religion and culture. Spain’s religious consciousness is largely of Catholic influence, although people of older age experience this to a greater extent than adolescents or younger people (Olarte, Núñez, & Guillén, 2001). Additionally, Catholic spirituality has been associated with an external center of control, in which the events of one’s life are attributed to external forces; in an end-of-life healthcare context, religiously-oriented patients see these external forces as divine, with God being responsible for health and wellbeing (Olarte, Núñez, & Guillén, 2001). This implies that psychosocial and spiritual suffering at the end of life in a Spanish medical context tend to be seen as less internally and individually dependent and more externally and collectively dependent. While this connection between external divine control and adverse medical circumstances is not explicitly stated in the clinician interviews, it may help contextualize the importance health professionals in Spain attribute to spiritual wellbeing.

Music therapy in end of life care

Difficult emotional circumstances encountered at the end of life come with a critical need for self-expression and self-disclosure. As MD Anderson Palliative Care Artist-in-Residence Marcia Brennan stated in Life at the End of Life, our culture often cannot bring itself to look directly at dying subjects, leading to the social and physical marginalization of individuals at the end of life (Brennan, 2017). Death is commonly perceived as undesirable, unthinkable, and a subject to be relegated to the shadows. Pilar Arranz, a Spanish palliative care psychologist, stated, “in the Western world it is not common to confront death face to face” (As cited in Benito, Barbero & Dones, 2014, p. 77). In this sense, music therapy in end of life care can provide a professional avenue by which clinicians can face death and find the human amidst difficult circumstances, making “otherwise abstract issues vividly concrete and discussable” (Brennan, 2017, p. 50). In fact, music therapists on interdisciplinary palliative care teams have become increasingly common in recent years (Clements-Cortes, 2016). Empirical studies of music therapy in palliative care settings have found that music therapy techniques can successfully reduce patients’ pain perception, enhance perceived quality of life, reduce symptoms of anxiety and depression, enhance mood and self-esteem, assist with reconnecting to one’s identity, and facilitate communication with others (Clements-Cortes, 2016).

Ultimately, the motivation for undertaking this project is based on an interest in what common ground, both personal and professional, clinicians who are affiliated with work in music therapy at the end of life may share in fulfilling many of the ideals of medical humanism. I hypothesized, pre-interviews, that these physicians and therapists, based on both their proximity to complex suffering and healing through the creative arts, would stand out for their focus on patient subjectivity in generating their own professional voice, centering their careers on seeing and caring for multiple dimensions of a human being.

Project Setting

This project was conducted at El Instituto Música, Arte y Proceso (the Institute of Music, Art and Process, or IMAP) in Vitoria-Gasteiz, Spain. IMAP is a multidisciplinary institution that focuses on using music in a diverse array of medical and therapeutic contexts. Currently, IMAP is in the process of pioneering what may be the first formal hospice facility in Spain outside of a hospital or home service context. IRB Approval was granted by Rice University for completion of this study, as IMAP does not have an IRB or equivalent review board.

Participants

Participants of this project were music therapists and physicians who either performed or were exposed to music therapy in end-of-life care. Clinicians were recruited via snowballing techniques in which known candidates who meet criteria were asked directly for their participation (Patrick, Pruchno, & Rose, 1998). The clinicians did not all incorporate music therapy into their healthcare practices; rather, they were affiliated in some way with music therapy, whether it be (a) participating in IMAP’s vivir con voz propia (“living through your own voice”) program, a community program that seeks to promote hospice and palliative care through the music therapy institute; (b) seeing patients at the end of life on an interdisciplinary care team with a music therapist; or (c) doing professional music therapy sessions in a hospital.

The pool of clinicians included nine music therapists and four physicians by profession. However, since music therapy is often added later on in a career due to its existence only as a master’s degree in Spain, this same pool of clinicians also included people who were (and still are) psychologists, nurses, and professional musicians. An important note to make is that all clinicians interviewed in this study, despite being involved music therapy and end of life care, hold varied career positions (Table 1). In addition to their professional training (i.e. music therapist versus physician), the duration of time spent working in the field, techniques utilized most frequently in practice, access to patients (small-town or suburban care versus working in the city center), context of care (home care, hospital, etc.), and age group of patients (pediatric, adult, geriatric, etc.) are all factors which certainly affect clinicians’ perspectives on their field; their responses to open-ended interview questions were reflections of their professional status, experience, and context.

Design and Procedures

For this project, semi-structured interviews were utilized to gain participants’ perspectives of humanistic approaches to end of life care. Interview questions were pre-determined and open-ended and elicited both concrete and narrative knowledge of the interviewees (Ayres, 2008). Interviews were all conducted in Spanish, recorded, and transcribed by hand. All interviews were done face-to-face, either in-person or through video chat. A permission form describing the study’s intents, purposes, and methodology was read aloud to each interviewee beforehand, and verbal consent to participate was attained from each person. Interviews lasted from 15 to 30 minutes, with 20 minutes being the targeted duration. The interview was formatted in a semi-structured manner, and all included the following questions:

Data Analysis

The process of data interpretation was a narrative analysis approach, which focuses on “experiences and events as the participants understand them” (Schutt, 2011, p. 339). The process of interviewing and interview analysis followed the flow of content clinicians chose to share and attempted to “preserve the integrity of personal biographies,” in this case biographies regarding physicians’ and music therapists’ professional lives (Schutt, 2011, p. 339). The process of generating themes from interviewees was inductive, utilizing grounded theory. The primary interview material was the basis for constructing categories and generating theory (Denzin & Lincoln, 2008). This study utilizes a constructivist approach to value individual clinicians’ subjective experiences and perceptions on approaches to care (O’Callaghan, 2009). While I had an idea of how to organize the responses to my questions pre-interview, the categorical themes included in analysis emerged from the lens of informal conversation with clinicians, relying also on my own subjective perception of what they expressed as important to end of life care, such as their tone of voice and emotional reactions to my questions.

Illness and relational identity

Patients’ relational networks came from other people or daily activities that defined them as a person. Firstly, the clinicians interviewed frequently reported that music therapy assisted in some way with the experience of pain, highlighting the interconnectedness of patients’ physiological outcomes with their sense of personhood. Likewise, the role of the music therapist in seeing an individual’s “capacities” beyond illness and disability addressed challenges to one’s daily life routine and therefore challenges to one’s sense of self. Wellbeing in this case can be defined as something that may not be seen at the moment of the clinical encounter but became evident looking at the patient in the context of their relational network, as the music is passed from therapist to patient to family. In the following quotes, participants discussed how patients’ sense of self and relational networks impacted their clinical practice.

Definitions of suffering and wellbeing

A common theme for conceptualizing what it means to suffer as well as what it means to be well was deferring to the knowledge and perceptions of the patient. From the perspective of the participants, a patient defined what wellbeing and suffering meant for themselves, with one physician noting that health was “What the person considers to be well.” Additionally, some saw another’s wellbeing as a reflection of themselves, and vice versa, highlighting the reciprocal nature of defining suffering and wellbeing. The following quotes describe patient and provider’s subjective experiences in deciding what it means to be well and guiding care accordingly.

Spiritual themes

All clinicians interviewed noted that a patient’s spirituality were important, even essential, to their wellbeing and in relevance to their therapeutic or medical relationship with the patient. Additionally, clinicians interviewed noted distinctions between spirituality and religiosity by the absence of formal beliefs and emphasis on subjective feeling, such as of peace. For the music therapists, rather than just coping or facilitating a means to an end, music at the end of life became a process of growing, rising, and generating spiritual meaning. Physicians especially noted that they did not feel that their medical training prepared them to address spiritual needs. The quotes to follow detail participants’ perceptions of spiritual aspects of their practice.

Emotional and psychosocial themes

Clinicians interviewed tended to declare emotional and psychosocial issues, such as emotional release and self-acceptance, as inextricable from medical issues. A key component of involving emotional and psychosocial issues in care was to both allow a person to express emotions such as fear, and pick up on non-verbal cues of emotion such as presence and family cohesion. Additionally, many of the music therapists noted that feelings at the end of life were not purely negative but included joy and release in tandem with difficulty and suffering. In the following quotes, participants describe instances in which they found navigating emotional and psychosocial aspects of care essential, such as protecting family cohesion, giving acceptance to someone experiencing self-blame, and fear and frustration giving way to peace.

Co-constructing routes of healing between patient and provider

Another recurring theme among clinician interviews was the immense value placed on patients’ desires, understandings, and skills in building their clinical encounter. The clinicians interviewed frequently mentioned themes of co-constructing psychosocial, spiritual, and physical healing alongside patients. Rather than serving exclusively as bearers of knowledge, they tended to describe their clinical roles as ones of accompaniment, which prioritize and empower the voice of the patient. In the following quotes, clinicians describe their mindset of deferring to the patient’s voice while delivering care.

Reflexivity and distinctions between cure and care

This final section on reflexivity refers to a prominent tendency of the clinicians interviewed to reflect on their own individual perceptions, feelings, and shortcomings in the first-person. The clinicians frequently noted methods of medical treatment or healthcare intervention, both their own or systemic, which they did not find adequate to care for patients at the end of life. In doing so, they brought up perceived distinctions between methods meant to cure or fix an ailment and ones that center on caring for the patient as a holistic being, which they favored, with one music therapist even describing their work as when “medicine arrives at this point when it can’t do any more.” In the following quotes, clinicians detail their perspectives on how to be aware of their own limitations in practice.

A commonality spanning all seven derived themes was the lack of focus on medical illness itself, whether the interviewee was a physician or not. While medical literature frequently centers on distress, trauma, and pain, patients’ lived experiences contained a mixture of these themes along with positive elements less commonly associated with death, such as joy, love, and clarity (Brennan, 2017). When clinicians in this study brought up patient cases, they briefly mentioned disease states of patients – if at all – and tended toward describing patients’ psychosocial circumstances. One physician provided an anecdote regarding the value of basic human contact, such as conversation, and stated that it should not be underestimated in its healing power. They remarked, “I met a patient who told me, the person most important to me is the cleaning lady. Because every morning she chatted with him, and then achieved much more than I did…people want to go where the human can reach.”