1
Using Music-Thanatology Vigils to Enhance and Improve
End of Life Care in the Acute Care Setting
Trish Weaver
Music-Thanatology Training Program Lane Community College
June 15, 2009
Copyright © 2009 Trish Weaver
Acknowledgements
Words seem inadequate to express my deepest gratitude to Steve and to the rest of my family for
supporting me in my journey to become a Music-Thanatologist. I also need to thank my manager
and co-worker for being patient during these last two years while took extra time off. Thank you
to the instructors and to my fellow interns of this amazing program. Their grace and dedication
to Music-Thanatology is a light that shines and shows the way for us all. Special thanks to my
harp teacher, Kathleen Staub who walked with me on this amazing journey and to Jen Hollis for
assisting me in writing this paper and last but certainly not least thank you to Sharilyn Cohn, my
mentor and hero.
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“When the human being hears music, he has a sense of well-being,
because these tones harmonize with what he has experienced in the
world of his spiritual home.” Rudolf Steiner
Music-thanatology is described as a subspecialty of Palliative Care. The primary goal of a
palliative model of care is relief of suffering. Patients at end of life experience pain, dyspnea,
anxiety and other distressing symptoms which go hand in hand with suffering. Suffering may be
physical, emotional, psychological or spiritual in nature with the current acute care system in the
United States is ill equipped to handle.
The inpatient system is designed to provide acute, episodic interventions for people with
reversible disorders. The primary goal of the acute care system is cure. It isn’t the lack of skill or
insensitivity of hospital staff that contributes to gaps in care at end of life but one of design. The
system is designed for patients who will improve and get on with their lives.
1
I believe the acute
care staff struggle with this paradox. The argument of my paper is that clinical staff, in addition
to patients and their loved ones, benefit from the music-thanatologist’s vigil offering.
Even though studies demonstrate the majority of people wish to die at home, with loved ones
by their side, the majority of North Americans die in the acute care setting. Two thirds of the
American population die in hospitals or nursing homes.
2
Every year two-million people die in
America, 80% are not dying in their home against their expressed wishes to die at home.
3
Multiple advances in healthcare have changed the path of death and dying. After WW II
societal and cultural shifts appeared with advances in industry and technology aimed at
improving life.
4
Physicians became more specialized and care of the family evolved from the
family physician to that of multiple providers. Specialists such as internists, dermatologists,
3
orthopedic surgeons, pediatricians and obstetrical physicians improved care and also led to some
of the fragmented care. The family physician that shared in the family history started fading
away. Families drifted apart geographically, culturally, socially and emotionally. The expectation
of an extended family caring for loved ones during milestone events such as birthing and dying
shifted from the family home to health care institutions.
5
I have worked in the acute care system
as a registered nurse for close to thirty years in a variety of different roles. I have witnessed
many changes in healthcare practices. These changes are advances in medical technology,
scientific innovation, and societal changes as well as the evolution of regulatory and
reimbursement issues. Hospital length of stays has decreased from 9 days for a total hip
replacement in 1994 to 3 days presently. Post-partum hospital stays were much longer than the
48 hour stay we see currently. The majority of surgeries have moved from the inpatient setting to
ambulatory settings.
Patients are being discharged from ICU’s and stroke and pneumonia patients may not even
be admitted to the hospital. Surgical patients once admitted days prior to the operation for pre-
operative care are now admitted the morning of surgery. As a result of these changes, patients in
the hospital setting are much sicker requiring more aggressive and expensive medical techniques.
Their care is complex, critical and challenging.
“Acute care” is a noun defined as short-term medical treatment, usually in a hospital for
patients having a short term illness, injury or recovering from surgery. In medicine, “acute care”
is defined as a medical condition having a rapid onset followed by a short but severe course.
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Patients expect to regain their well-being after a short period of treatment and then resume life as
fully recovered or rehabilitated.
7
Traditionally hospital culture is not focused on end of life care.
4
Fundamentally the nature of acute care is cure, or control of medical problems versus the natural
process of dying.
In my care of dying patients I have been conflicted in wanting to be emotionally and
physically present for the dying, but needing to be at the bedside of my other patients. I have also
had to perform the duties of a Hospital Administrative Supervisor weighing the needs of a
grieving family against the need to admit another waiting patient versus sending them to an
outside facility. What is more important? Is it the family that needs to stay and ritualize the death
of a loved one, or is it the patient needing a transfer from the Emergency Department to an
inpatient bed where his/her complex needs can be met. The competing needs in the acute care
system reinforces this paradox.
Hippocrates, one of the earliest physicians, maintained that disease was a “natural” course in
our lives. This philosophy is in contrast to 21
st
century ideology that “death is no longer a natural
process, but a failure of modern medicine.”
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When physicians, hospital administrators and nurses
view death as a failure, the focus of care shifts to more invasive and aggressive treatments. These
treatments are not only physically painful, but emotionally, psychologically and spiritually
painful as well. This paradox may create ambiguity for the nurse. Nurses are vulnerable to the
emotional, physical, and intellectual aftermath which is not always recognized or acknowledged.
When nurses are unable to grieve effectively stress is increased, self-esteem declines and
relationships may be eroded. These factors impact how they care for dying patients in the future.
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Modern medicine has achieved great strides in keeping people alive. Our ICU’s are filled
with patients receiving aggressive treatments which seemingly prolong death rather than
preserve life. One out of five patients in the ICU die.
10
Medical and nursing schools focus on
diagnosis of disease, disease management or cure and treatments to sustain life which shapes the
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patient’s experience. The American hospital system is not set up to care for patients no longer
wanting aggressive, curative or lifesaving care. Patients and families become confused and
conflicted when they hear “nothing more can be done.” The transition away from aggressive
medical interventions to hearing “nothing more can be done” can leave patients and family
reeling. Typically, ethical issues are raised once a decision moves from lifesaving at all costs to
comfort care. Hospitals have Ethics Committees to grapple with these issues.
I am a past member of an Ethics Committee in an acute care facility and experienced
firsthand the conflicting expectations of patients and families, as well as hospital staff and
committee members.
In the book The Last Dance Encountering Death and Dying, DeSpelder and Strickland
describe an “interventional cascade” that surrounds people with more and more technology as
they die. This machination of care only adds to the paradox of prolonging death versus
preserving life. Per capita in the acute care system the majority of health care dollars are spent in
the last year of a person’s life in the acute care system. Hospice and palliative care focus on
healing rather than curing. The monks of Cluny France honored the dying by their care of the
body and cure of the soul.
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Even though the major diagnosis in the ICU is death, pain and suffering at the end of life are
not well controlled or alleviated.
12
Death is the most common illness in the ICU.
1
This is an
additional source of staff frustration, stress and conflict. Staff suffering and grief are often
camouflaged as burnout, depression, and alcohol abuse. It can cause strain on outside
relationships and at its worst the depersonalization or withdrawal from patients.
Hospital administrators often purchase tools to identify how long it should take to administer
medication, perform admission assessments, insert catheters, provide discharge education,
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change dressings and a myriad of other tasks. Hospital staff may need to justify how long it takes
to prepare a patient for surgery, and perform other duties. There are no assessment tools to track
how long it takes to ease suffering of the dying and their support system. There are no standards
for relieving the nurse involved in the dying of a patient s/he may have cared for over several
days, weeks or even months. While a nurse may feel compelled to sit with a dying patient or
family, he or she still has accountabilities to the needs of other patients. The dying patient may
have orders that discourage invasive or painful treatments that are no longer of any benefit.
Maintaining a presence and sitting at the bedside, keeping the patient as comfortable as possible,
tending to care of the “person” shifts care away from the frenzied motions of time-sensitive tasks
towards tasks that may mirror the slower movements of the liminal patient.
The Center for Medicare and Medicaid has reimbursement tables and the length of stay
charts for hundreds of diagnoses. “End of Life” care is not a diagnosis and doesn’t come with a
DRG, Diagnosis Related Group, which is part of the reimbursement program. Nurses in managed
care systems may see the same patient for multiple admissions and may be involved in the
patient’s last hospital stay. It isn’t unusual to develop bonds with chronically ill patients and yet
the emotional aspects of caring for the dying may not be considered in the acute care system.
How long is too long when sitting at the bedside stroking the hand or head of a person that is at
end of life and alone? Where does compassionate care fit into the indices for payment? Fiscal
accountability should not (always) trump human accountability.
Relief of suffering is a hallmark of end of life care. The acute care system has tools to
identify patients at risk for falls or for developing wound or pressure ulcers or malnutrition.
There objective scales to pinpoint pain in quantifiable measures. However there are no
algorithms, scales or identifiers for suffering. Suffering doesn’t show up on a M.R.I. or C.A.T.
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scan and the acute care system struggles with meeting the needs of the suffering patient. It has
only been recently that The Joint Commission and the American Association of Colleges of
Nursing have identified the need to improve end of life care for patients dying in the hospital.
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Spiritual needs are to be addressed on admission for all patients. During my internship for the
Music-Thanatology Training Program I rarely found documentation in inpatient charts regarding
spirituality. This is another dilemma, is the lack of documentation regarding spiritual needs due
to time constraints or does this indicate a lack of understanding of spiritual needs?
Once death is accepted as imminent, dying patients are often placed in rooms far from the
nurse’s station. This practice has been in place for decades. Some patients are in double
occupancy rooms placing additional burdens on the nurse as s/he cares for the dying patient. As
the life span in the U.S.A. continues to grow with a larger proportion of people older than 65,
many people will die alone.
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Their peers may be too frail or deceased to be at the bedside. Fear
can also be a factor as many may be afraid of seeing what their future holds. Most people have
not been in attendance during the death process, or witnessed a death.
Demographics, geographic mobility, medical technology are just a few factors which have
influenced how we view death and how we have become desensitized and unfamiliar with the
death experience. Attitudes around death and understanding of dying have been largely shunned
by the news and entertainment media as distasteful or uncomfortable. When death is portrayed in
the media the events are usually glorified and do not reflect reality.
We have not been taught these skills. The skill of “care of the body and cure of the soul”
which the monks of Cluny established was forgotten. The death rituals of Cluny honored the
dying by attending to the physical as well as spiritual needs. Sacred psalms were offered the
body was anointed as prayers of forgiveness and salvation were said. Bells were rung at death
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and the monks were followed by the community with lit candles while sacred chants were heard
throughout the procession. These rituals were lost for centuries. The sacred chants of Cluny have
been revived by the music-thanatologist offerings.
The majority of people in this country have not discovered how to talk comfortably about
end of life issues. Good communication between clinicians, patients, and family members has
been identified as the most important element in end of life care but it is the most challenging.
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Language shapes how the acute care system views death and with statements of “nothing else
can be done” this impacts how people may view end of life care. This creates despair and fear.
How different it might be if the medical community could communicate comfortably by telling
the patient and family that while we can not cure the person there is much that can be done to
alleviate or control pain and suffering, whether it is physical, spiritual or emotional.
We honor the hospital birth experience. Prospective parents are offered multiple choices of
amenities to meet the requirements of their “personal” birth plans such as private suites, spas etc.
Family and friends are invited into the delivery room to watch and celebrate the arrival of a new
life. What a contrast for the dying person and their family. There are few opportunities for input
in what the death experience might be. There isn’t a death plan. Private rooms are offered based
on availability and there are competing needs for private rooms. The birthing suites are typically
all private whereas many hospitals still have shared occupancy rooms on general units.
Training in end of life care for physicians and nurses is sparse. A 2002 telephone survey of
62 U.S. medical school deans revealed 84% of respondents agreed end of life care education is
very important and 67% stated their curricula did not devote enough time to it.
16
The article
went on to state “…in focused clinical experience, death is conspicuous by its absence, reflecting
a medical culture that defines death as a failure.”
17
Few nurses are afforded the opportunity to
9
experience caring for the dying while in nursing school. The first experience for most is an
experience that lives in their memories for their entire career. The experience is defined as
difficult leaving behind feelings of loss, sadness and hopelessness. Multiple and frequent deaths
only embed these emotions leaving the nurse feeling emotionally exhausted.
Future patient care may be negatively impacted due to a lack of recognition and support for
nurses who tend to the dying. The past will influence the future and unresolved grief has the
potential to lead to complex grief, burnout and becoming desensitized to suffering or grief of
others. Nurses need resources to explore attitudes and feelings towards death. Hospital nurses,
as well as physicians view caring for the dying as an indication of failure and loss of control,
which is a source of personal discomfort. With the multiple competing needs of their patients the
dying patient that no longer requires routine or required treatments may be isolated by the lack of
required nursing interventions. The very nature of the work with death and dying may isolate the
nurse from normal support systems.
The need for confidentiality adds another element to the potential for unresolved grief as it
may limit how the nurse can express or share their grief reactions. Multiple studies have shown
that expression of grief is needed for resolution to take place. Nurses struggle with processing
and communicating to release grief responses while maintaining patient confidentiality.
Rituals around death, once seen as a way to help ease suffering and to bring comfort and
peace to the living, have changed. Rituals held at the patient’s death have helped the participants
say good-bye to the patient and to deal with their own grief.
17
As a nurse in acute care the major ritual for the dying is seen in the postmortem care. The
nurse or aide removes the instruments of the patient’s last battle. Catheters, I.V. lines, patches,
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electrodes and other medical instruments are removed from the body. Toe tags are tied and the
body is placed in a plastic zippered bag.
Research tells us the grief process is supported by allowing families to spend as much time as
needed with the deceased. Families may need to hold and kiss their beloved, but this is in
conflict with the need to ready the room for the next patient. The body is taken to the morgue via
stretcher which is camouflaged so as to hide the fact that people die in hospitals. This is just
another way to deny death and contribute to the idea that death is a failure in healthcare. Funeral
homes are directed to the back entrance of the hospital where deliveries are made and where
Environmental Services dispose of hospital waste. Hospital morgues are usually far away from
patient care areas or where visitors would be in attendance.
It isn’t unusual to see signs of relief from nurses when they see the music-thanatologist
walking into their units. Nurses tell us over and over how grateful they are that someone is able
to focus on the needs of the dying. They tell us they need the music as well. There have been
studies and articles written supporting the benefits of music-thanatology vigils for the patient and
families.
18
It is my contention that live harp and voice offerings by a music-thanatologist also
benefit and ease the suffering of the nurses. Nurses have reported feeling a sense of calm and of
feeling more relaxed when they hear the musical offerings.
19
Florence Nightingale recognized the power of music in hospital wards to aid in the healing
process for soldiers injured in the Crimean War.
20
It has been said that the power of music goes
to the heart of the human being.
21
Music affects the parasympathetic division of the autonomic
nervous system in a positive way and acts to decrease the heart rate, blood pressure and demand
for oxygen which helps provide a relaxation response. This results in decreased anxiety.
22
Music
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affects our entire being, the way we think and feel. Music affects our physical response either
consciously or unconsciously.
In writing this paper I developed, collected and analyzed a survey to get a sense of how
nurses in an acute care setting felt about caring for the dying patient and if they felt the music-
thanatologist vigil’s provided any benefit to them as professionals. It is important to note the
facility has an Inpatient Palliative Care Service which staff mentioned in the surveys as a benefit
for the patients and also for themselves.
Approximately 35 surveys were handed out, 25 were completed. Survey respondents
were: 21 nurses, 3 nursing assistants and 1 respiratory therapist.
SURVEY
1. What type of patients do you care for?
2. Do you feel adequately prepared/trained to care for these patients?
3. Do you care for dying patients?
4. Do you believe the acute care system understands the emotional and spiritual needs of the
dying patient? Yes No Please elaborate:
5. Do you feel you are able to meet the spiritual and/or emotional needs of the dying
patient? Yes No Please elaborate:
6. Is there any benefit to you as a professional when a music-thanatologist offers the dying
patient a vigil? Yes No Please elaborate
7. Does your unit/hospital offer support for you as a nurse caring for the dying? Yes No
Please elaborate:
RESULTS
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1. Diagnoses: end-stage renal, liver disease, cardiac, pulmonary, oncology, vascular,
diabetes, geriatrics and general medical and surgical patients.
2. 24 out of 25 felt prepared to care for the patients to whom they were assigned
3. All have cared for dying patients
4. 14 felt the acute care system understands the emotional and spiritual needs of the dying
7 answered yes and no
4 answered no
5. On a personal basis for understanding the emotional and spiritual needs of the dying:
18 felt they were able to meet these needs
5 felt they were unable to meet these needs
2 were -/+
6. All but 1 respondent felt they benefited as a professional from the vigils.
7. 14 respondents felt the hospital and/or their individual units supported the “nurse” in
caring for the dying. 4 respondents felt they were not supported.
Overall staff felt they personally could support the needs of patients and families that are
dying but are limited in delivery of care due to time constraints. Some of the concerns were:
• Lack of private rooms
• Gray area of “spirituality”
• Lack of information on “spirituality” with the focus more on disease and clinical
management
• “I feel I have to neglect some emotional needs because of busyness”
• “sometimes I feel too busy to really sit with patients and talk/listen/hold a hand:
• Code status isn’t addressed early
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• “I don’t feel like I have the time to meet patient and family needs to the extend I would
like”
In the question of does the music vigil help the nurse/staff person. The comments were all
favorable. One respondent answered no, but didn’t leave a comment. The overarching theme was
how families and the dying responded with a sense of calm and peace which then helped the
staff. Following are some of the comments:
• “Gives me time to see other patients”
• “Helps patient and family to relax and be comforted”
• “Brings peace and good memories”
• “It calms patient’s and families”
• “It’s peaceful and gives an opportunity for reflection and relaxation”
• “The music is beautiful”
• “Relaxing, peaceful and it helps both patients and family and staff—spiritually and
emotionally”
• “Sets the mood for patient, family and staff—comfort”
• “It is calming, provoking, peaceful time for patient and family”
• “Eases the journey”
• “The patients respond well and I relax and feel calm”
• “Changes the sterile hospital environment”
Working in healthcare is stressful, difficult, and rewarding. Caring for patients at end of life is
even more challenging in the acute care system due to the competing needs of patients that have
time sensitive treatments juxtaposed to sitting quietly so no one dies along. The beautiful
vibrations and music offered by the music thanatologist isn’t only heard by the dying patient.
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The gentle wafting of the music-thanatologist music knows no boundaries and is able to soothe
the nurse in their rush to meet the needs of all their patients. The vigil offered by the music-
thanatologist isn’t as comprehensive as a “birth” plan, but is one way to honor the life and death
of our patients and the people that care for them. My hope is through music-thanatology the
conversation of a death plan can be born.
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1 Whedon M., Hospital Care. In: Ferrell BR, Coyle N. Textbook of palliative nursing, © 2001
pp. 584-585
2
DeSpelder L., Strickland A., In: McGraw-Hill. The last dance encountering death and dying
©
2005 pp. 10
3
Ibid 11
4
Benoliel J. In: Oxford University Press. Textbook of palliative nursing
©2001
5
DeSpelder L., Strickland A., In: McGraw-Hill. The last dance encountering death and dying
©2005 pp. 12
6
Tabers cyclopedic medical dictionary In: Davis ©1989 pp. 34
7
DeSpelder L., Strickland A., In: McGraw-Hill. The last dance encountering death and dying ©
2005 pp. 125
8
Boyle D., Miller P., (et at.). Communication and end-of-life care in the intensive care unit:
patient, family, and clinician outcomes. Critical Care Nursing Quarterly,
Volume 28(4) pp. 2
9
Rashotte J., Fothergill-Borubonngis F., (et al.) Pediatric intensive care nurses and their grief
experiences; A phenomenological study. Heart and Lung Sept/Oct. 117, pp. 372-386
10
Boyle D., Miller P. (et al.). Communication and end-of-life care in the intensive care Uuit:
patient, family, and clinician outcomes. Critical Care Nursing Quarterly, Volume 28(4) pp. 2
11
Lamm L., Cerddeu S. Class lecture, “History of Death and Dying in Western Culture-I“ Lane
Community College Music-Thanatology Training Program May 17, 2008
12
Boyle D., Miller P. (et al.) Communication and end of life care in the intensive care unit:
patient, family and clinician outcomes. Critical Care Nursing Quarterly.
Volume 28(4) pp. 2
13 McCurdy D. Ethical spiritual care at the end of life. American Journal of Nursing. Volume
108(5) pp. 11
14 Cole. “Independence in jeopardy.” The Oregonian 3 June 2009 D1
15
Boyle D., Miller P. (et al.) Communication and end-of-life care in the intensive care unit:
patient, family, and clinician outcomes. Critical Care Nursing Quarterly. Volume 28(4) pp. 1
16 Dickinson G. Teaching end-of-life issues in U.S. medical schools: 1975 to 2005 American
Journal of Hospice & Palliative Medicine Volume 23(3) pp.197-204
17 Weir S., Grief and critical care nursing: occurrence and resolution The Journal of Pastoral
Care & Counseling Volume 59 (3) pp. 293
18 Roberts P., “Relief of suffering at end of life: report from an Australian project to implement
and evaluate a live harp music-thanatology program, December 2005
19 Williams S., Harp at heart hospital of New Mexico, an interview with Paul Levy, M.D. and
Sue Hoadley, C.M.P. The Harp therapy Journal Winter 2008-09
20 The anxiety and pain reducing effects of music interventions: a systematic review, AORN
journal volume 87(4)
21 Ibid, pp. 782
22 Ibid pp. 802
23 White J., Effects of relaxing music on cardiac autonomic balance and anxiety
after acute myocardial infarction. American Journal of Critical Care Volume 8 (4) pp. 220
Bibliography
16
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Music-Thanatology Class Lecture
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#37, May 17, 2008
Newspaper Article
Cole, Michele, “Independence in jeopardy.” The Oregonian 3 June 2009, D1
Report
Roberts, Peter. “Relief of suffering at end of life: Report from an Australian project to
implement and evaluate a live harp music-thanatology program.” December 2005
18
