Music-Thanatology: an Integral
Member of the Palliative
Interdisciplinary Team
Chris Newberry
Holistic models of health care delivery identify and address the spiritual needs of patients.
The vigil provided by the music-
thanatologist supports the spiritual needs of the patient and
contributes to the goals of the interdisciplinary team.
“Perhaps the care of the dying is not about the care of the body but the care of the soul.”
Rachel Naomi Remen
November 6, 2011 Copyright © 2011 Chris Newberry
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The knock of death on one’s door inevitably evokes a substantial shift in a
person’s consciousness and marks the beginning of a journey onto unknown terrain.
While this terrain is universal to the human experience, when people face the reality
of death as their own, a passage to a transformative period that is unique to the
individual opens. (Dowling-Singh 3-6) A terminal diagnosis brings with it a
potential host of spiritual needs that are incumbent on the health care provider to
identify and manage. (Pulchalski C 90) Though the healing arts find their origins in
religious and spiritual traditions, end-of-life care is often rendered in health care
settings that have a wealth of technology yet are sparse on spiritual care.
(Daalleman TP) Death has proved to be an existential challenge not only for many
patients who face the dim unknown, but also for the empirically-based conventional
western medical system that is more oriented toward biomedicine than managing
spiritual needs (Henig 1-2) (Steinhauser). Yet, spiritual care in hospice has existed
since its inception and in an interdisciplinary setting since the US Congress created
the Hospice Medicare Benefit in 1982. (Egan K 19-21) And, for over a decade,
music-thanatologists have participated as members of the interdisciplinary team
(IDT) in palliative/hospice care, contributing their services to the spiritual needs of
the dying.
Spiritual Care Models and Palliative Care
The need to have spirituality and spiritual care acknowledged and provided in
modern healthcare settings has drawn increased attention from popular media,
patients and peer review journals encompassing multiple disciplines. This renewed
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focus on spirituality and healthcare has been reflected in an increase in literature on
subjects related to spirituality within the healthcare professions. (Anandrajah G)
The need to provide spiritual care can be seen in the greater context of a growing
trend toward holistic, patient-centered care. According to a 2007 National Institutes
of Health (NIH) survey, Americans spent $34 billion on complimentary and
alternative medicine annually in 2006. 38% of people in the US seek alternative
healing modalities that are not considered a part of conventional medicine. (Nahin,
2009) The internet and social media have also empowered the consumer and
created new types of patient-centered interactions between patient’s and providers.
(Lober WB)
Several holistic models that acknowledge the need for spiritual care have been
created within the conventional medical system over the past one to two decades.
Two primary models for spiritual care are the biopsychospiritual model and patient-
centered care. (Pulchalski C 55) In his work on optimal healing environments, Jonas
includes the spiritual needs of patients. (Jonas W) And, the dignity model created by
Chochinov is directed toward well being of the terminally ill. (H. Chochinov)
In the biopsychospiritual model, everyone is considered to have a spiritual
history, whether or not this history is held within an explicit religious tradition; for
many it may unfold within the context of nature, relationships or values. This
system acknowledges the interrelationship between body, mind and spirit. (Smith)
The patient-centered care model is based on shared decision-making that is rooted
in an understanding of the values and beliefs of the patient. (Pulchalski C 66-68) It
places the patient at the center of the interdisciplinary team. In a speech to the
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American Academy of Internal Medicine, Dr. Berwick summarized this orientation
as: “The health care system as a whole—would be far better off if we professionals
recalibrated our work such that we behaved with patients and families not as hosts
in the care system, but as guests in their lives.” (Berwick)
In the 19
th
century, Florence Nightingale said that nature alone heals and that
the task of the healer was to put the patient in the best possible condition so that
nature could act. (Dossey 284) Jonas, who researched the effects of optimal healing
environments (OHE) stated:
“We currently define an OHE as one in which the social,
psychological, spiritual, physical, and behavioral components of health care are oriented
toward support and stimulation of healing and the achievement of wholeness. In our
opinion, these components include: …
1. Conscious development of intention, awareness, expectation, and belief in
improvement and well being;
2. Transformative self-care practices that facilitate personal integration and the
experience of wholeness and well being.
3. Techniques that foster a palpable healing presence based on compassion, love,
and awareness of interconnectivity
4. Development of listening and communication skills that foster trust and a bond,
sometimes called the “therapeutic alliance,” between practitioner and patient
6. Responsible application of integrative medicine via the collaborative application
of conventional and complementary practices in a manner supportive of healing
processes
7. The physical space in which healing is practiced, including characteristics of light,
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music, architecture, and color among other elements that can influence the impact
on an OHE. “ (Jonas W)
The dignity model was developed to promote quality of life in terminally ill
patients. It provides caregivers with a therapeutic map, incorporating a broad range
of physical, psychological and social and existential concerns that may affect
individual perceptions of dignity. The acronym ABCD stands for the Attitude of the
provider toward the patient, the Behavior engaged in, expressed Compassion and
Dialogue involving patient and family. Chochinov’s research revealed a strong
association between an undermining of dignity and hopelessness, depression, a
feeling of being a burden and poorer quality of life. Therapeutic measures aimed at
addressing underlying issues surrounding dignity resulted in a lessening of these
symptoms. (H. Chochinov) (H. H. Chochinov)
Holistic Models, National Guidelines and Music-Thanatology
These holistic models of care are relevant to the field of music-thanatology
because they are accepted frameworks within conventional medicine that provide
context for the intervention of music-thanatology, a professional subspecialty of
palliative care, in meeting the spiritual needs of patients. While it is not within the
scope of this paper to discuss how the physical and emotional needs of patients may
be addressed by music-thanatology, these models also provide a framed of
reference for these dimensions.
This growth toward holistic models of care that include the spiritual dimension is
reflected in national guidelines that embrace spiritual care as a fundamental
component of quality palliative care to be delivered by an IDT. One of the guidelines
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states: “An interdisciplinary team will address pain and symptom control,
psychosocial distress, spiritual issues, and practical needs with the patient and
family throughout the continuum of care (National Consensus Project: Quality
Palliative Care Guidelines). The Joint Commission ( formerly JCAHO) also
recommends completion of a spiritual assessment for patients admitted to acute
care hospitals (The Joint Commission: Spiritual assessment).
What is Spirituality?
The definition of spirituality and spiritual care has multiple interpretations.
(Daalleman TP) A universal, broad-based definition of spirituality that encompasses
religious and non religious perspectives is helpful when working within the health
care environment, as many people see themselves as “spiritual” but not “religious”.
(Anandarajah G) The American Holistic Nurses Association calls spirituality “The
essence of our being…Inherent in the human condition, spirituality is expressed and
experienced through living our connectedness with the Sacred Source, the self,
others and nature.” (Burkhardt) The 2009 Consensus Conference on improving the
quality of spiritual care as a dimension of palliative care agreed on the following
definition: “Spirituality is the aspect of humanity that refers to the way individuals
seek and express meaning and purpose and the way they experience their
connectedness to the moment, to self, to others, to nature and to the significant or
sacred”. Meaning, connectedness and search for the significant or sacred are critical
elements that are present in many definitions of spirituality. (Pulchalski, Ferrell and
Virani)
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Evidence shows that spirituality is a patient need and that persons with terminal
illnesses consider aspects of spirituality to be one of the most important
contributors to the quality of life. (Balboni TA) Research has indicated that spiritual
distress occurs among many who are facing death, and that spiritual resources help
them to cope (Johnston Taylor) Some studies suggest that psychosocial and
existential issues may be of even greater concern to patients than pain and physical
symptoms. (H. H. Chochinov 5520) This underlines the importance of determining a
patient’s spiritual needs when they enter the end-of-life period.
Spiritual Need Assessment
Identifying spiritual needs lies at the heart of developing a plan of spiritual
support and care for a person facing the end-of-life. There are several spiritual
assessment tools used by health care providers. A common one is the acronym FICA
– Faith or beliefs, Importance of spirituality for a person, Community or connection
to meaning or spiritual source, A for how to address or assist these needs or
interests. (Borneman T) The HOPE tool provides concepts for discussion that are as
follows: H – sources of hope, strength, comfort, meaning peace, love and connection;
O- the role of organized religion for the patient; P-personal spirituality and
practices; E-effects on medical care and end-of-life decisions. (Anandarajah G).
There are several other methods of obtaining a spiritual history and performing an
assessment, and there is no one method that is particularly recommended as stated
by The Joint Commission and the National Consensus Project. Once a history is
obtained, clinicians are able to identify the presence of a spiritual issue and make
appropriate referrals to chaplains or other members of the palliative care team.
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This referral process is the key link that identifies the music-thanatologist as an
appropriate care provider for a particular patient. The following image depicts this
process:
(Pulchalski, Ferrell and Virani)
Excellent spiritual care can be thought of as a circular process in which initial
screening by clinicians leads to referrals to spiritual care providers who in turn
conduct in–depth assessments and develop a plan of spiritual care, which is then
shared with the team. Working from this model, the effectiveness of each discipline
may be maximized. Key to this effectiveness is the mutual understanding within the
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IDT of the competencies inherent in the practice of each discipline. (Pulchalski,
Ferrell and Virani)
Spiritual Needs at the End of Life
Spiritual distress and spiritual crisis may be triggered in patients facing
impending death. Unmet needs, whether new or old, may be expressed through
direct statements expressing such feelings as hopelessness, despair, guilt or
loneliness. Or, indirect expressions of these needs may come out as feelings of
anxiety, fear, anger or aggression. (Johnston Taylor) An exploration of the spiritual
assessment tools reveals a wide range of needs that, when unmet, may cause
spiritual distress:
• Meaning
• Hope
• Acceptance and forgiveness
• Relatedness and connection
• Transcendence
• Trust/Safety (Kemp)
Though not identified on the spiritual needs assessment, Dowling-Singh notes the
following qualities to be integral to the Nearing Death Experience that she defines
as: “an apparently universal process marked primarily by the dissolution of the
body and the separate sense of self and the ascendancy of spirit.” (Dowling-Singh 7)
From this perspective, the dying process can be seen as a journey toward these
qualities:
• Beauty
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• Peace
• Silence/Interiority
• Grace
• Quality of Sacred/Love
• Relaxation (Dowling-Singh 9-11)
Spiritual Needs, Music-Thanatology and the Interdisciplinary Team
Music-thanatology has been oriented from its inception to respond to the spiritual
needs of patients and lends itself to support the work of the palliative IDT.
Pulchalski says, “Spiritual care provides a way for health care professionals to
connect with their patients in meaningful ways that include listening to their hopes,
fears and pain. Through a collaborative relationship, an opportunity for healing as
distinguished from curing can occur.” Healing in this context refers to the ability of a
person to find meaning, comfort, connection or peace in a milieu that may include
chaos, suffering and pain. (Pulchalski, Ferrell and Virani) Therese Schroeder-
Sheker, the founder of the field of Music-Thanatology, refers to music-thanatology as
“monastic medicine, care of the body, cure for the soul”. She states in her
monograph, “Transitus” that one of the goals of music-thanatology is relief from
spiritual suffering and that interior sorrow, fear, anger, anxiety, loneliness or
depression are “genuine experiences that patients live, and we respond to them…
There are some experiences that no opium derivative or analgesic can touch.”
(Schroeder-Sheker 52) The word “heal” comes from the Old English word haelen
which means to “make whole or sound”. To heal can mean to restore a person to
11
spiritual wholeness. Music-thanatology and palliative medicine share this concept of
wholeness and acknowledge that their respective professions may be the source of
support or solace in achieving spiritual well being and healing. (Sherman 5)
Each discipline on the IDT practices an art, whether of medicine, nursing, social
work, chaplaincy, therapy or music-thanatology. Not only does each discipline
provide a needed service to the patient, but also working collaboratively, the sum of
the whole of the services may be more than the parts (Crawford). The following vigil
that I shared with my mentor and co-student illustrated how music-thanatology
supported a particular goal of the IDT and also the unique spiritual needs of the
patient.
We were asked by the medical social worker (MSW) to hold a vigil for a ninety-
year-old man and his daughter who had, that morning, decided to go on hospice:
Father and daughter greeted us warmly. Our arrival was viewed as having special
significance because it came just after a care conference where they had decided to go on
hospice. The daughter said that the angels had sent us. As the vigil unfolded, the daughter
climbed into bed next to her father who was able to cradle her in his arms. They wept and
whispered words of endearment to each other. He reassured her that all was well and in its
rightful place. Though not a part of our thematic offerings, our mentor intuitively played
“Amazing Grace”. The daughter couldn’t believe that a hymn that was so special to she and
her father was being played at this moment. At the end of the vigil, the father thoughtfully
expressed that the music had helped him make an important decision that day. This was
confusing, because we thought the important decision had already been made. As it turned
out, there was a second decision awaiting: whether he would go back to his home or to a
nursing home to live out the rest of his days. The vigil had brought him to a clear decision.
In this case, the IDT determined the need for a care conference to discuss hospice care
and discharge plans. The significance and potential existential pain this decision could
create for the family was identified by the MSW who initiated a referral to music-
thanatology. The vigil supported this father and daughter in exploring and experiencing the
meaning in the decision to go on hospice and it helped the father to make yet another
important choice. This vigil filled the need for relatedness and connectedness in a deep way.
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It supported the need for hope in that the hope to find the best place with regard to his
daughter and his death was decided on. It honored the need for the quality of beauty, the
sacred and for love. The fact that the MSW acted as the agent to bring the music-
thanatologist to the bedside engendered a stated feeling of trust on the part of the family.
Healing presence is one of the qualities of an OHE identified by Jonas. Here is an
example of that presence:
“When Margaret came…her presence alone is something that is therapeutic…she
speaks in a quiet voice and has a certain presence. She touches hands with everyone
and really brings the whole apprehension down.” (Hollis 63)
Within this nurturing environment, the spiritual need for trust, relatedness,
connection and beauty (presence of the graceful harp) have already potentially been
touched upon even before musical elements are released into the environment and
people present.
Physical space transformation as well as the need for the sacred, were described
in these two instances:
“And she played and it was so beautiful and you could feel the energy in the room
shift. And the moment that she stopped playing, you could feel that difference in the
room.” (Hollis 63)
“It provides a sacred space”, said social worker Pam Simon, “It creates a sacred
bubble…whoever is inside that bubble is experiencing something safe and sacred
and relaxing and quiet.” (Hollis 115)
A nurse found that the presence of music delivered by the music-thanatologist
reassured her that the patients were being well cared for during her busy work day.
(Hollis 115) This and the following example from a vigil I participated in, show how
music-thanatology delivers many of the dignity-conserving qualities depicted by
Chochinov as well as supporting the need for relatedness:
We greeted a beautiful 33-year-old woman with terminal cancer. Her husband had
13
recently abandoned the family. She had two young children that were being cared
for by her sister who dropped her at the front of the hospital for this admission. She
was tense and depressed. We embraced her with a warm presence and infused the
room with musical elements carefully selected to meet her countenance, vital signs
and history. At the end of the vigil she appeared relaxed and lighter. She said that it
had been a very long time since she had a single positive thought. Yet, while
listening to the music, she was able to recall happy memories and good feelings
about her children. She attributed this to the music.
Chochinov identified “an ability to identify a sense of positive self regard” with a
care tenor that “refers to an attitude and manner that promotes dignity” as
measures that resulted in diminished distress. (H. H. Chochinov 5521) The
attention of the music-thanatologist, the presence of the harp and the delivery of
musical elements tailored to the needs of the patient, all support the concept of
dignity. (H. H. Chochinov 5523)
A physician-member of an IDT that included a music-thanatologist, spoke to the
way he believed music-thanatology addressed the spiritual need of relatedness in
people who were no longer able to communicate with words. He said:
Dying is about relationship. And so if we can establish a relationship with somebody
who’s dying, we’re truly ministering to that person. Music-thanatology is a way of
communicating with people who don’t use words or organized thought. We can
maintain relationship with the individual through music. (Hollis 116)
A chaplain identified the role of music-thanatology as a sacramental activity:
We resonate with the divine. And I think that’s what music-thanatology is about –
it’s hitting upon that concept of resonance, and we resonate with the same vibration
of the divine, if you will. (Hollis 118)
This is an example of how music-thanatology can support a patient’s need for
transcendence.
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In conclusion
The vigils reveal the potential prescriptive qualities that musical elements,
delivered by the music-thanatologist, bring to the bedside. Schroeder-Sheker calls
music-thanatology “sonic medicine, compounded and customized to meet the needs
of the individual.” (Schroeder-Sheker) Conventional medicine has identified the
need to address end-of-life circumstances with more than pharmaceuticals.
Chochinov says, “The Institute of Medicine has identified overall quality of life and
achieving a sense of spiritual peace and well being among the key domains of quality
end-of-life care. As well, patients deem a sense of spiritual peace, relieving burden
and strengthening relationships with loved ones among the most important facets of
end-of-life care… Clearly, palliative interventions must reach beyond the realm of
pain and symptom management to be fully responsive to a broad and complex range
of expressed needs.” (H. H. Chochinov 5521) Also, “There are few nonpharmacologic
interventions specifically designed to lessen the suffering or existential distress that
often accompanies patients toward the end of life.” (H. H. Chochinov 5524)
The field of music-thanatology provides such nonpharmacological intervention.
The growing number music-thanatologists working as members of palliative
interdisciplinary teams reflects both the effectiveness of their interventions and the
acknowledgement of their efficacy by the health systems that employ them.
.
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