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Page 1: Arts and Humanities in Palliative Nursing Educationprc.coh.org/3A-/Arts-10.pdfHumanities: Art, Language and Spirituality in Health Care Series Editors: Christina M. Puchalski, MD,

Vol. 39 No. 5 May 2010 Journal of Pain and Symptom Management 941

Humanities: Art, Language and Spirituality in Health CareSeries Editors: Christina M. Puchalski, MD, MS, and Charles G. Sasser, MD

Arts and Humanities in Palliative NursingEducationBetty Ferrell, PhD, MA, FAAN, FPCN, Rose Virani, MHA, RN-C, OCN, FPCN,Hollye Harrington Jacobs, RN, MS, MSW, Pam Malloy, MN, RN, OCN, FPCN,and Kathe Kelly, RN, BSN, OCNDivision of Nursing Research & Education (B.F., R.V., H.H.J., K.K.), Department of Population

Sciences, City of Hope, Duarte, California; and American Association of Colleges of Nursing (P.M.),

Washington, DC, USA

Introduction

‘‘wNursing is an art: and if it is to be madean art, it requires an exclusive devotion ashard a preparation, as any painter’s or sculp-tor’s work; for what is the having to do withdead canvas or dead marble, compared withhaving to do with the living body, the templeof God’s spirit? It is one of the Fine Arts: Ihad almost said, the finest of Fine Arts.w’’1

Florence Nightingale

Florence Nightingale, recognized as thefounder of professional nursing, is creditedas an early voice acknowledging nursing as aninherently artistic endeavor. Many nursingleaders have subsequently described the prac-tice of nursing also as an intimate endeavorin which nurses care for patients at the mostprivate and stressful times of life.

Nowhere is this more important than in thearea of hospice and palliative care, wherenurses provide seriously ill patients and theirfamily members with care that addresses phys-ical, psychological, social, and spiritual needs.2

Address correspondence to: Betty Ferrell, PhD, MA,FAAN, FPCN, Division of Nursing Research & Edu-cation, Department of Population Sciences, City ofHope Medical Center, 1500 East Duarte Road,Duarte, CA 91010, USA. E-mail: [email protected]

Accepted for publication: November 18, 2009.

� 2010 U.S. Cancer Pain Relief CommitteePublished by Elsevier Inc. All rights reserved.

Because nursing is an intrinsically artisticendeavor, as well as a scientific practice, theeducation of nurses in formal academicprograms and through continuing educationfor those in practice can be enhanced throughinclusion of arts and humanities.

Arts and Humanities in the ELNECProject

The End-of-Life Nursing Education Consor-tium (ELNEC) is an international, continuingeducation, train-the-trainer program prepar-ing nurse educators to integrate palliativecare in undergraduate, graduate, and continu-ing education programs. Detailed informationabout ELNEC is available on the website (www.aacn.nche.edu/elnec).3 The ELNEC projecthas curricula/projects including ELNEC-Core, Critical Care, Pediatric, and Geriatrics,and the latest curriculum initiated in 2010 isthe ELNEC-Veterans project, creating a nurs-ing education program specific to institutionsserving veterans.

Since 2001, the ELNEC project has trainedover 11,000 nurses through 69 train-the-trainerprograms representing nurses from all 50 statesand from 65 countries. In each of these courses,arts and humanities have served as valuablemeans of educating nurses.

The artwork in Figs. 1e4 are examples ofillustrations used in the ELNEC curriculumand were created by an artist, Connie Rose,

0885-3924/$esee front matterdoi:10.1016/j.jpainsymman.2009.11.314

Page 2: Arts and Humanities in Palliative Nursing Educationprc.coh.org/3A-/Arts-10.pdfHumanities: Art, Language and Spirituality in Health Care Series Editors: Christina M. Puchalski, MD,

942 Vol. 39 No. 5 May 2010Ferrell et al.

who worked closely with the ELNEC investiga-tors to create these beautiful illustrations tocapture key issues in palliative nursing. The in-clusion of art, poetry, film, narrative, drama,and other means enables the faculty to teachthe ‘‘art’’ of palliative nursing, which can besummarized in the following themes.

Illness as Human ExperienceThere is an abundant body of research that

has confirmed that changing practice ismuch more than simply improving knowledgethrough didactic lectures. Adult learning is farmore likely to occur, and to be retained, whenlearners engage multiple senses and when theyare moved to a new understanding by engag-ing emotions, self-reflection, hearing stories,and being in touch with thoughts and experi-ences that are often repressed.

The arts and humanities are invaluable inpalliative nursing education for each of theabove reasons. One of the key goals in theELNEC education is to remind nurses thatillness is a profound human experience. Inthe Pediatric ELNEC training, the Lion in theHouse videos (http://www.lioninthehouse.com) are used to bring into the classroom thevoices and images of ill children, their siblingsand parents.4 These profound images remindus that first and foremost, the patient isa person. Reading poems or narratives written

Fig. 1. Illness as Human Experience.

by patients are also valuable in helping nursesto listen carefully to the words to hear the storyof the person.

The Nurse-Patient RelationshipOne of the key goals in the ELNEC training

is to focus on the unique contributions ofnurses in palliative care. Nurses recognizethat while our care is interdisciplinary in na-ture, there is much to be learned about thenurse-patient relationship.

A number of teaching methods used inELNEC are derived from the arts and humani-ties to address this area. One of the basic skillsessential to the nurse-patient relationship isthrough role play in which nurses are taughtto listen silently as their role play partner speaksof a loss they have experienced in their lives.This simple five-minute listening exercise canbe a profound recognition of the value of‘‘being’’ with patients, rather than only ‘‘doing.’’

Another effective resource has been use ofthe film ‘‘Evan Mayday’s Good Death’’ in ourELNEC Critical Care training (http://www.med.umich.edu/nursing/EndOfLife/mayday.htm).5 This film was produced by a nurse,Linda Stodtman, RN, PhD, also an ELNECtrainer, and tells the story of a man whomakes the decision to discontinue his ventila-tor support when his life quality was per-ceived to be unacceptable following years as

Fig. 2. Nurse-Patient Relationship.

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Vol. 39 No. 5 May 2010 943Arts and Humanities in Palliative Nursing Education

a paraplegic after an accident. The filmbeautifully tells the story of his end-of-life de-cision through interviews with his wife andbeautiful photos of Mr. Mayday throughouthis life as a paraplegic and as a personwho is ventilator dependent. Most profound,however, are the very honest interviews withhis nurses, physicians, and other caregiversas they describe their struggle in supportingMr. Mayday and his wife as he makes the de-cision to die. The use of film, photography,and other resources help nurses to vividlysee the importance of the nurse-patient rela-tionship in palliative care.

The Sacred Work of Palliative NursingNurses attending ELNEC training often ar-

rive at the courses both physically and emo-tionally drained from their daily lives andwork. They often share their frustration in at-tempting to provide compassionate qualitycare amid staffing shortages, budget cuts, andever increasing demands to document care,an increasing severity of illness in their clients,and the pressures of the workday to accom-plish even basic care. During the ELNECcourses, it is common for nurses to ‘‘unwind,’’to connect with their like-minded colleaguesand to be reminded that their work is sacred.Through self-reflection exercises, journaling,film, role play, and other means, nurses oftensay that they remember why they becamenurses and they again recognize their worth.

Fig. 3. Sacred Work of Palliative Nursing.

In response to course evaluations, a sessionhas been added in the courses on ‘‘Self-Care.’’In this session, nurses do a self-care assess-ment/reflection and also discuss in small groupsways that they care for themselves and alsosupport their staff. This self-care sessionconcludes with reading together a poem, Grace.6

Grace

Give me the grace

To care

Without neglecting my needs,

The humility

To assist

Without rescuing,

The kindness

To be clear

Without being cold,

The mercy

To be angry

Without rejecting,

The prudence

To disclose

Without disrespecting my privacy,

The humor

To admit human failings

Without experiencing shame,

The compassion

To give freely

Without giving myself away

dSource unknown

SufferingNurses often come to ELNEC courses seek-

ing increased knowledge to enhance theirskills in pain management, symptom control,bereavement support, or other ‘‘technical’’ as-pects of care. Once immersed in a communityof other palliative care nurses and a safe envi-ronment for sharing their experiences, it hasbeen found that the case discussions, breakoutsessions, and questions often center on the

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Fig. 4. Suffering.

944 Vol. 39 No. 5 May 2010Ferrell et al.

existential aspects of end-of-life care and onthe suffering of patients and families.

While many narratives about nurses are pow-erful depictions of unique circumstances, mostare instead profound in their simplicity.Nurses’ work actually resembles that of ordi-nary people enduring very stressful circum-stances. A nurse in the fullest sense relates tosuffering people with an authentic and gentleapproach.7 A caring nurse offers calm to terri-fied parents in a neonatal intensive care unit,assurance to the family awaiting the outcomeof a surgery, hope to the patient receiving a firstdose of chemotherapy, and a consistent pres-ence to the patient in long-term care.

While literature and the media often createa negative and inaccurate portrayal of nurses,there are some fictional portrayals of nursesthat capture the essence of care. One such por-trayal is found in Range of Motion, a novel byElizabeth Berg.8 This novel is a story of Jay,a man who becomes comatose after being hitin the head by melting ice that falls froma building. Jay is transferred to a nursinghome, and while most of his family and careproviders have little hope for his recovery, hiswife Lainey remains optimistic. She works con-tinuously to maintain Jay’s dignity while shewaits, ever present, for his awakening.

One evening, Lainey returns to the nursinghome and the nurse, Wanda, suggests that Lai-ney may want to lie down in the bed next to Jay.The story continues told through Lainey’s eyes:

‘‘Just let me do something first,’’ Wanda says.She moves to the side of Jay’s bed, pullsdown the sheet. He is on his side, and she re-moves the pillow supporting him, holds himover with one hand while with the other shereaches for the bottle of lotion on his bed-side stand. She’s proud of the way Jay’sskin has held up, no bedsores yet. Shesquirts some lotion into one hand, closesthe bottle again and puts it back on the bed-side stand. Nurses are good at this kind ofthing, using one hand for things that nor-mally require two. And if you get one likeWanda, you can see the caring along withthe skill. She rubs Jay’s back with strong, cir-cular strokes, and I watch, spellbound.There is a mesmerizing quality to watchingsomeone do almost anything with care: tai-lors in their dry-cleaner windows, hunchedover sewing machines. Bakers making artout of frosting. Children with a new packof crayons and fierce intent. We are meantto use what we have, whatever it is. We aremeant to be less mindful of our insides,more outwardly directed. That’s what Ithink, as I watch Wanda rub Jay down, asthe minty smell of the lotion makes its wayover to me. There is incredible value inbeing in service to others.’’8

One of our most valuable teaching resourcesused in our ELNEC Pediatric training hasbeen the film ‘‘Turning Toward the Morn-ing.’’9 This film presents three cases includingthe death of a young child in a car accident,a suicide of a young adult, and the deaths ofa father, mother, and infant from AIDS. Thefilm is particularly poignant in its artisticexpression of these stories, told not in spokenwords but through visual images, photographs,and music. In the absence of words, nursesview this film with great focus on the imagesthat are powerful.

Use of this film, as well as the other uses ofarts and humanities that evoke strong feelings,must be followed with time for discussion anddebriefing, as these artistic expressions oftenlead to intense feelings by the nurse partici-pants. We also are attentive to participantneeds, for example, in cases where participantsmay need individual attention if these experi-ences evoke strong emotion, unexpressedgrief, or other responses. Another exercise

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Vol. 39 No. 5 May 2010 945Arts and Humanities in Palliative Nursing Education

used in our Pediatric ELNEC has beena ‘‘From the Heart’’ art exercise in whichnurses’ journal and create pictures on a heart,writing a message to a child or family they havecared for. The hearts are then placed togetherin a collage with other heart drawings, illustrat-ing the shared community of pediatric nursingin palliative care. The use of arts and humani-ties to touch the hearts of participants must bemet with responsible support by course faculty.This is especially important because many par-ticipants are attending the course alone, faraway from their usual support systems.

SummaryThe depth and breadth of palliative nursing

care is advanced through integration of artsand humanities in our education. Nursing stu-dents and novice through expert practicingnurses benefit greatly from these experiencesand we believe that they are better preparedto practice nursing, the finest art.

References1. Nightingale F. Notes on nursing, what it is, and whatit is not. New York: D. Appleton and Company, 1860.Available from http://digital.library.upenn.edu/women/nightingale/nursing/nursing.html. AccessedOctober 1, 2009.

2. Coyle N. Introduction to palliative nursing care.In: Ferrell B, Coyle N, eds. Oxford textbook ofpalliative nursing, 3rd ed, Chapter 1 New York:Oxford University Press, 2010.

3. The End of Life Nursing Education Consortium(ELNEC). Available from www.aacn.nche.edu/elnec. Accessed October 1, 2009.

4. Bognar S, Reichert J. A Lion in the house [Motionpicture]. Lion in the House videos. Sherborn, MA:Aquarius Health Care Media, 2006. Available fromhttp://www.lioninthehouse.com. Accessed October1, 2009.

5. Strodtman LK, Goode Giacomazzam M,Mann SL. Evan Mayday’s ‘‘good death:’’ Teachinghealth professionals collaborative care. [Motion pic-ture] 2006;. Available from http://www.med.umich.edu/nursing/EndOfLife/mayday.htm. AccessedOctober 1, 2009.

6. Anonymous. Grace. Available from http://www.bellaonline.com/articles/art38074.asp. AccessedOctober 1, 2009.

7. Ferrell B, Coyle N. The nature of suffering andthe goals of nursing. New York: Oxford UniversityPress, 2008.

8. Berg E. Range of motion. New York: BerkleyBooks, 1995.

9. Pickard C, Pickard A. Turning toward the morning:Stories of love & loss, of grief & hope. [Motion picture]2003. Available from Rites of Passage, P.O. Box 226,Vanderpool, TX 78885. http://ritesofpassagejourney.org/turning.htm. Accessed October 1, 2009.