Music therapy with imminently dying hospice patients and their families: Facilitating release near the time of death

Abstract

Hospice care seeks to address the diverse needs of terminally ill patients in a number of physical, psychosocial, and spiritual areas. Family members of the patient often are included in the care and services provided by the hospice team, and hospice clinicians face a special challenge when working with families of patients who are imminently dying. When loved ones are anticipating the patient's impending death, they may find it difficult to express feelings, thoughts, and last wishes. Music therapy is a service modality that can help to facilitate such communication between the family and the patient who is actively dying, while also providing a comforting presence. Music therapy as a way to ease communication and sharing between dying patients and their loved ones is discussed in this article. The ways in which music therapy can facilitate a means of release for both patients and family members in an acute care unit of a large US hospice organization are specifically described. Case descriptions illustrate how music therapy functioned to allow five patients and their families to both come together and let go near the time of death. Elements to consider when providing such services to imminently dying patients and their families are discussed.

Full text

Abstract
Hospice care seeks to address the
diverse needs of terminally ill patients
in a number of physical, psychosocial,
and spiritual areas. Family members
of the patient often are included in the
care and services provided by the hos-
pice team, and hospice clinicians face
a special challenge when working
with families of patients who are
imminently dying. When loved ones
are anticipating the patient’s impend-
ing death, they may find it difficult to
express feelings, thoughts, and last
wishes. Music therapy is a service
modality that can help to facilitate
such communication between the fam-
ily and the patient who is actively
dying, while also providing a comfort-
ing presence. Music therapy as a way
to ease communication and sharing
between dying patients and their loved
ones is discussed in this article. The
ways in which music therapy can
facilitate a means of release for both
patients and family members in an
acute care unit of a large US hospice
organization are specifically described.
Case descriptions illustrate how
music therapy functioned to allow five
patients and their families to both
come together and let go near the time
of death. Elements to consider when
providing such services to imminently
dying patients and their families are
discussed.
Background
Music therapy is a complementary
treatment modality which increasing-
ly is being recognized as an important
adjunct service within hospice and
palliative care organizations.1-8 A
number of patient and family needs can
be addressed simultaneously through
music therapy as a creative holistic
service within hospice care.9When
these needs are addressed, the patient
and family can express and share feel-
ings, as well as continue to communi-
cate and interact in a meaningful man-
ner, even as the patient declines and
ultimately dies.10-13
A critical and often difficult period
for families and loved ones is the time
immediately before the patient’s death.
Although patients receiving hospice
care have a life expectancy of six
months or less, should a disease
process follow its anticipated course,
determining exactly when a patient
will die is impossible for doctors and
other hospice care team members.14
However, terms such as “imminent
death,” “approaching death,” “impend-
ing death,” and “actively dying” are
used to describe patients whose vital
signs are rapidly declining towards
expiration.15-20 Some signs and symp-
toms of approaching death include a
cooling of the extremities, coloring or
mottling of the skin, slow and/or irreg-
ular breathing, an increase in sleeping,
a buildup of fluids and secretions in
the lungs and throat, apparent confu-
sion, and restlessness and agitation.5
Various rating scales may be used to
describe the patient’s status as he or
she declines toward death. The Kar-
nofsky Performance Scale, which is
used at the Hospice of Palm Beach
County in West Palm Beach, Florida,
rates a patient whose fatal processes
are rapidly progressing as being mori-
bund, with a score of 10 out of a possi-
ble 100. A score of zero indicates that
the patient has died.21
When imminent or impending
death is noted in a patient’s care plan,
family members are often informed
129American Journal of Hospice & Palliative Care
Volume 20, Number 2, March/April 2003
Music therapy with imminently dying
hospice patients and their families:
Facilitating release near the time of death
Robert E. Krout, EdD, MT-BC, RMTh
Robert E. Krout, EdD, MT-BC, RMTh, Music
Therapy Programme Leader, Conservatorium of
Music, Massey University, Mt. Cook, Wellington,
New Zealand; formerly Music Therapy Manager,
Hospice of Palm Beach County, West Palm
Beach, Florida.

that they may wish to plan their last
visits with the patient as soon as possi-
ble. During this last period of the
patient’s life, family members often
are faced with the challenge of
expressing their feelings without the
patient being able to overtly commu-
nicate in response to them. Family
members may feel frustrated when the
patient cannot look at or speak with
them, or even hold or squeeze their
hands. The patient’s appearance may
also be disturbing to the family, as it
may have drastically changed or dete-
riorated since a previous visit. For
example, apnea, sounds of congested
breathing, or observed restlessness
and agitation may be troubling to visi-
tors. For loved ones, even being able
to determine the exact time at which
the patient dies can be difficult. As
Kastenbaum noted, the perceptible
moment at which life ends is not
always clear to the observer, as vital
signs may slowly diminish and fade
almost imperceptibly at the actual
moment of death.22 Visitors may not
realize that the patient has expired
until a physician or nurse has checked
vital signs and pronounced the patient
to have died.
Music as therapy
Active expression of feelings of
grief and anguish by loved ones dur-
ing this time is considered to be both
normal and healthy, and the entire
hospice interdisciplinary care team
helps to facilitate this process.23 The
team can include a wide variety of
professionals, including the physician,
nurse, nursing aide, social worker,
pastoral counselor, dietician, physical
therapist, music therapist, a volunteer,
and additional clinicians such as an art
therapist, massage therapist, acupunc-
turist, movement therapist, Reiki
practitioner, and others. When family
members and other loved ones visit
shortly before an anticipated death,
the hospice music therapist has a
unique opportunity to engage them
and create a meaningful experience
for them with the patient.
As each patient’s and family’s situ-
ation and needs are unique, music
therapists provide individualized in-
terventions based on these needs at the
time of the session. The music used
during a session with patient and
loved ones can include original, folk,
contemporary or popular, jazz, classi-
cal, spiritual, and many other styles.
The music can function in a number of
ways during the therapeutic process.
The first consideration is maintaining
the physical comfort of the patient.
Music therapy with imminently dying
patients may include techniques to
facilitate pain control, help provide
physical and emotional comfort, assist
in relaxation, and reduce anxiety.
Music therapy may also involve pas-
sive or active participation by the fam-
ily. As one example, the selecting,
singing, or listening to familiar or
favorite songs of the patient and fami-
ly may stimulate discussion relating to
life memories, reminiscence, and life
review. Family members may request
a specific song, listen to or sing with
the therapist, and then reflect on the
significance of that song to them and
the patient. The music may elicit an
emotional response that can then
allow for the sharing of feelings and
emotions. These feelings can then be
validated, normalized, and explored
by the therapist. Teahan24 used the
acronym VINE to describe the work
of the hospice team in facilitating the
Validation, Identification, Normali-
zation, and Expression of feelings of
anticipatory mourning on the part of
the patient’s loved ones, a process that
contributes to a healthy grieving
process. For families with a strong
religious base, hymns or other sacred
songs may result in sharing feelings of
spiritual strength with the patient and
one another. Each session is unique,
and the music therapist must be flexi-
ble about the needs of the family and
patient at the time of the session.
Following are five single-session
case descriptions, vignettes that are
designed to illustrate how music ther-
apy enabled a joining of the patient
with family members shortly before
the patient’s death. Music therapy
offers release in different ways. The
actual clinical death may be a consid-
ered a physical release for the patient
at the end of her or his life. The death
may also provide a release for the
family and loved ones, in their know-
ing that the patient is no longer ill or in
discomfort. While this release is a clo-
sure of sorts, it is also just one event in
the grief journey of a family member
or other loved one.
Case examples
The following sessions all took
place at the C.W. Gerstenberg Hospice
Center at Hospice of Palm Beach
County, Florida, an organization that
serves approximately 650 patients per
day. The Gerstenberg Center houses
an acute care unit. Some patients
admitted for skilled care physically
decline as a result of their disease
process, and then further decline
toward eventual and imminent death.
Family and friends of patients are free
to visit 24 hours a day, seven days a
week. Each private room has convert-
ible sofas and chairs for sleeping. It is
not uncommon for family members to
remain continuously at a patient’s
bedside during the final days and
hours, including the time of death.
While none of the patients were overt-
ly responsive at the time of these ses-
sions, the patients’ caregivers were all
present. The caregivers gave their
consent for a brief description of the
session to be shared in an article to be
used for educational purposes, with the
understanding that no actual patient or
family names or specific identifying
information would be used. As such,
the names or initials of the following
patients have been changed, with the
130 American Journal of Hospice & Palliative Care
Volume 20, Number 2, March/April 2003

exception of Ms. T, whose first name
was Rose. The sessions are described
in the first person from the author’s
perspective as the clinician.
Case one: Ms. P
Ms. P was a 37-year-old woman
with ovarian cancer. Immediately be-
fore meeting with Ms. P and her fami-
ly, I had been visiting with another
patient in the common area of an inpa-
tient unit. As I provided live songs as
comfort and support for the other
patient, Ms. P’s aunt and brother
walked through and stopped to listen.
They entered Ms. P’s room, and
remained there while I finished my
visit in the common area. After con-
cluding the first visit, I entered Ms. P’s
room to offer music therapy services.
Ms. P was reclining in bed with her
head leaning to her left on her pillow.
Her eyes were partly open, and her
breathing sounded shallow and dry.
Ms. P seemed to be minimally respon-
sive and not able to communicate with
her family members. Impending death
was noted on Ms. P’s care plan.
I asked Ms. P’s aunt and brother if I
could share some music with Ms. P
and them to provide comfort. Ms. P’s
brother replied. “She can’t hear us,
she’s almost gone.” I told them that
Ms. P might be able to hear even
though she could not speak. I ad-
dressed Ms. P directly, telling her “My
name is Robert. I’m a music therapist,
and you are with us here at hospice.
You are very safe, and your family is
here with you. We will keep you com-
fortable. I am going to sing some songs
to help you relax. Just listen to the music.
It is a gift from your family to you, and it
is a privilege to visit with you.”
I then asked Ms. P’s aunt and broth-
er what type of music she enjoyed.
Both replied “hymns and gospel.” Ms.
P’s aunt asked to hear “Amazing
Grace” and “anything else you like.” I
began with “Amazing Grace,” and
then continued to play a medley of
spiritual songs, including “Michael,
Row the Boat Ashore,” “He’s Got the
Whole World in His Hands,” “This
Little Light of Mine,” and “Kum-
baya.” During the music, Ms. P’s aunt
sang with me (I had provided copies
of the words), and Ms. P’s brother sat
next to the patient with his hand on her
left shoulder. I began the songs at a
moderate tempo and then slowed the
pace and lowered the volume through
the final verse. “Kumbaya” was thus
sung in a gentle and tender manner.
The final words of the song were “Oh
Lord, come by here,” the translation
of the song title from Angolan to
English. Both Ms. P’s aunt and broth-
er appeared to appropriately express
feelings and emotions during the ses-
sion, crying lightly at several points.
After concluding the music, I
stayed with the patient and family to
provide support and to thank them for
traveling across the country to visit. I
also explored their support system
with them and validated their feelings
of impending loss. Ms. P’s aunt and
brother thanked me several times for
visiting, saying that the music helped
them interact with Ms. P in a meaning-
ful manner. Ms. P died later that night.
In summary, Ms. P’s aunt and
brother had offered a cue that music
was meaningful to them by stopping
in the unit to listen as I provided music
for another patient. In the room, their
interaction with the patient shifted
from passive (“She can’t hear us”) to
active. Both family members told me
that the music helped them say good-
bye to their loved one.
Case two: Ms. G
Ms. G was a 78-year-old woman
with a terminal diagnosis of dementia.
I had provided some music for her and
several of her adult children the previ-
ous day, and the family requested that
I return again. During the first visit,
Ms. G presented as minimally respon-
sive, as she did on this visit.
When I entered the room, Ms. G
was lying in bed with her eyes closed.
She appeared to be comfortable and
relaxed. Six family members, includ-
ing adult children and some of their
spouses, were present. During the pre-
vious visit, the family had asked for
spiritual songs from the Roman
Catholic faith. These had included
“On Eagle’s Wings” and “Be Not
Afraid.” During the current visit, a
daughter asked me to play and sing
“Wind Beneath My Wings.” We
briefly spoke about the meaning of the
song, and she shared that “Beaches”
had been a favorite movie of the
patient. She also shared that the pa-
tient had “always been there” for the
family. I validated and reinforced this
sentiment for the family, noting that
this was a time that the family was
able to “be there” for their loved one.
We briefly explored the theme of the
song and movie (support of a loved
one during a long terminal illness),
with the support metaphor being “the
wind beneath the wings.” I also
addressed the patient directly, saying,
“This is a song of love and support
from your family. It is a gift they
would like to share with you now.”
During the singing, family mem-
bers focused their eyes and attention
on the patient. Two daughters, one on
each side of Ms. G’s bed, held her
hands. Several family members grasped
tissues and dabbed their eyes. The
patient appeared comfortable through-
out but did not appear to respond to
the music in an overt manner. After
the song ended, a wonderful stillness
was present in the room. No one spoke
for 30 seconds. This silence was not
uncomfortable for me, nor did it
appear uncomfortable to the family
members. It was nothing that can be
measured quantitatively, but the still-
ness felt like it was comforting for all
persons in the room. I waited until a
family member spoke before I spoke,
to avoid intruding upon the family’s
moment. A son then expressed sincere
131American Journal of Hospice & Palliative Care
Volume 20, Number 2, March/April 2003

appreciation for the song. I shared that
this was a special time, and that hav-
ing the family together in such a sup-
portive manner made the music much
more powerful than if I had been visit-
ing with the patient alone. The work of
hospice is best realized when we
allow families to come together and
share meaningful moments during the
end-of-life transition. The family then
requested several spiritual songs,
including “On Eagle’s Wings” and the
“Prayer of St. Francis.” Again, there
was a comfortable feeling in the room
both during and after the music. The
family thanked me several times for
the visit, and Ms. G died within one
hour of that visit.
With Ms. G’s physical comfort
needs met, the family was able to
come together to say goodbye to her
and share on a psychosocial and spiri-
tual level through the music. The spe-
cific choices of songs and hymns
appeared to enhance the support that
the family provided to the patient and
to each other. The music also appeared
to connect all in the room—therapist,
patient, and family—in a concrete
way through the vibrations of the gui-
tar and voice, and the eye contact
between us. The music also stimulated
the family to touch and hold the
patient’s hands during the music.
Case three: Ms. T
Ms. T was an 85-year-old woman
with a history of breast cancer. I had
visited her room once during the pre-
vious week. The patient was minimal-
ly responsive at that time and had just
that day been admitted into the hos-
pice center. The family at that time
accepted my support and appeared
appreciative of the offer of music, but
declined, stating that the patient was
still “getting settled.” However, the
family had requested music therapy
today, and I was paged overhead.
Upon arrival, I observed Ms. T
reclined in bed with her eyes partly
open, appearing to be minimally
responsive. Ms. T’s nurse described
her as “actively dying,” and the
patient’s breathing sounded congest-
ed. A number of family members were
present in the room, including the
patient’s husband, children, and adult
grandchildren. One of the patient’s
daughters served as spokesperson for
the group, saying, “Ma’s close now,
and we thought music might be a good
thing.” I validated that statement, say-
ing, “Yes, she appears peaceful and
comfortable. Thanks to all of you for
being with her and for asking for me.”
The daughter related that the patient’s
favorite song was “The Rose” from
the movie of the same name. She said
that since her mother’s name was
Rose, this song had been special to her
for many years. I briefly touched on
some of the images and symbolism in
the song lyrics, focusing on the final
two lines of the song: “Just remember
in the winter far beneath the bitter
snows, lies the seed that with the sun’s
love in the spring becomes the rose.”
The family members shared that they
related to this image. The patient and
her husband had lived in New York
City during many cold winters and
then had relocated to South Florida in
the late 1990s. We also discussed, at
the family’s initiation, the metaphor of
the newly growing rose emerging
from the snow, signifying the release
of Ms. T’s soul to heaven after her
impending death.
During the song, family members
comforted each other and the patient.
Several cried lightly and hugged each
other. Following the song, I continued
to allow family members to share
memories of the patient’s life as well
as tell stories that involved the patient.
Several times these stories involved
humorous situations. At one point a
grandchild said, “I don’t know
whether to laugh or cry.” I told her
gently that both are okay and can hap-
pen at almost the same time. The fam-
ily did not want any other live music,
but chose to simply visit with each
other and the patient. Ms. T died later
that afternoon with the family present.
The use of a meaningful song
allowed for the family of Ms. T to
communicate on a number of different
levels. While listening to a recorded
version of the song also may have
been comforting for the patient and
loved ones, the exploration of the
imbedded meaning in the song
appeared to be especially meaningful
for the family.
Case four: Mr. J
Mr. J was an 83-year-old man with
congestive heart failure, renal failure,
and Alzheimer’s disease. The social
worker had said that the patient was
actively dying. When I entered the
room, Mr. J was lying in bed with his
eyes closed, seeming to be comfort-
able. Mr. J appeared to be struggling
with apnea, and I observed pauses of
20 to 30 seconds between noticeable
breaths. Seated at his bedside were his
wife and his sister-in-law. I introduced
myself and provided some supportive
and comforting words, telling them
what I could offer as a music therapist.
Mr. J’s wife asked if I knew the hymn
“Beulah Land,” explaining that the
hymn was a significant one for her
husband and herself. I asked to be
excused for a moment to get the music
from my office. Upon re-entering the
room, I observed Mr. J’s wife standing
and holding his hand. Mrs. J appeared
to be crying lightly, with her sister
physically comforting and supporting
her. I stood quietly for a minute, want-
ing to support the family without
intruding on their private and intimate
moment. Mrs. J turned to me and
asked if I would play “Beulah Land.” I
began the hymn, with the family sup-
porting each other and listening. As I
sang the beginning of the chorus, Mrs.
J began to sing with me. She sang
along with each verse and continued
to hold her husband’s hand. After the
132 American Journal of Hospice & Palliative Care
Volume 20, Number 2, March/April 2003

hymn, I told Mrs. J that I was honored
to be able to play a hymn that was so
meaningful for the patient and family.
Mrs. J related that hearing the words
of the hymn reinforced her belief that
her husband was going “to a better
place, Beulah Land.” We briefly dis-
cussed this image and conviction as
related to the family’s spiritual back-
ground. I thanked the family and then
left the patient’s room. Mr. J died one
and a half hours after my visit.
Music therapy appeared to help the
patient’s wife and sister-in-law actively
express their belief that their loved one
was leaving his physical body to go to
“a better place.” The singing and shar-
ing of that hymn at that time appeared
to help them with a release of their feel-
ing, and may have helped the patient
experience release as he died.
Case five: Mr. Y
Mr. Y was a 77-year-old man with
cancer of the pancreas. While check-
ing with a unit nurse regarding new
patients, I learned that Mr. Y was min-
imally responsive and that his wife
was keeping a vigil by the bedside.
Upon entering the room, I observed
Mr. Y lying in bed with his eyes open
but with his gaze fixed and his eyes
appearing to be cloudy. His wife was
sitting by his side, gently massaging
his forehead. Upon seeing the guitar
around my neck, she exclaimed “Oh
how wonderful, music for you” (say-
ing the patient’s first name). I intro-
duced myself, and Mr. Y’s wife began
sharing about her husband and their
relationship of over 40 years. When I
asked about their family, Mrs. Y
described their adult children and
grandchildren and where each family
lived. Although none lived locally, she
told me that many had been to visit the
patient at home during the past several
months “while he was good.”
Mrs. Y then turned to her husband
and said, “It’s okay to let go, we’re
going to have some music.” Turning
my attention again to Mr. Y, I
observed that his breathing appeared
quite shallow, with a pause of 10-15
seconds between each breath. I asked
if there was a special song that I could
sing to provide comfort. Mrs. Y said,
“I have a spiritual song that I wrote for
my husband. Can you follow me?”
She then began to sing, and I found
chords on the guitar that supported her
melody. The words related to her
belief that God would take her hus-
band from her when He was ready for
him. The words also said, “I will see
you again in the arms of the Lord.”
Mrs. Y sang the words several times,
and I observed Mr. Y’s breathing
appear to quicken. Mrs. Y indicated
after the song that she wanted to be
alone with her husband. I left the room
very quietly, not wanting to break the
wonderful stillness and love that I felt
in that room. Mr. Y died that night.
Hearing her original spiritual song
appeared to have specific meaning
and significance for the patient’s wife.
Getting to sing that special song to her
husband one last time seemed to be
especially important for her. It may
have been a stimulus for Mr. Y to be
able to let go as well.
Conclusions
In each of the above sessions,
music therapy played an important
role by helping family members to be
actively involved in the last hours of
the lives of their loved ones. The
music therapist did not set a specific
agenda or plan for each session.
Rather, each session unfolded based
on the presenting needs of the patient
and family at that moment. The time
immediately before the death of a per-
son can be especially difficult for the
family. Within the context of the inter-
disciplinary care team, music therapy
can help to bring comfort to patient
and family alike.
It is important for the music thera-
pist and other care team members to
remember that the final days and
hours of a patient’s life are times for
helping loved ones to visit and say
goodbye in their own ways and styles.
There are times when family members
do not want others, including staff
members, to intrude on that private
time. In other cases, loved ones look
to the hospice clinicians for help and
support in finding ways to visit and
say goodbye. It is during these times
that we as members of the hospice
team can provide support and facili-
tate meaningful release for both the
patients and those who love them.
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134 American Journal of Hospice & Palliative Care
Volume 20, Number 2, March/April 2003
As we move into our 20th year of publication, American Journal of Hospice & Palliative Care continues
its long and respected tenure as the journal of record for hospice and palliative medicine. It provides an
essential forum for articles covering all aspects of hospice and palliation from the medical and pharma-
ceutical to the administrative and social. Peer-reviewed by an internationally recognized editorial review
board, American Journal of Hospice & Palliative Care is renowned worldwide for its comprehensive
view of the changing focus of hospice and palliation. Indexed in Index Medicus/Medline,
Leeds Medical Information and Ageline Database.
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