Music Therapy During End-of-life Care in the Neonatal Intensive Care Unit (NICU) – Reflections from Early Clinical Practice in Colombia
Music therapy during end-of-life care has become an increasingly applied therapeutic option for a broad range of populations in a variety of settings. While music therapy in the Neonatal Intensive Care Unit (NICU) is a well-established field of clinical research and practice, there is a lack of literature that specifically addresses issues related to end-of-life care in this setting. In this article, the author aims to reflect upon some of the potentials, difficulties, and challenges when accompanying babies and their families during their last stages of life in the NICU. Three case vignettes will be described in order to exemplify aspects related to rituality, culture, memory making, and family-centred care. It is hoped that these case studies prompt the exchange of ideas and experiences among music therapists and other health care professionals concerned with end-of-life care in the NICU.
AAP American Academy of Pediatrics. (2013). Pediatric palliative care and hospice care commitments, guidelines, and recommendations. Pediatrics, 132(5), 966–972. http://dx.doi.org/10.1542/peds.2013-2731
AAP American Academy of Pediatrics. (2000). Palliative care for children. Pediatrics, 106(2), 351–357.
Allen, K. A. (2014). Moderate hypothermia: Is selective head cooling or whole body cooling better? Advances in Neonatal Care, 14(2), 113-118, http://dx.doi.org/10.1097/ANC.0000000000000059.
Archie, P., Bruera, E., & Cohen, L. (2013). Music-based interventions in palliative cancer care: A review of quantitative studies and neurobiological literature. Support Care Cancer, 21, 2609-2624, http://dx.doi.org/10.1007/s00520-013-1841-4.
Bieleninik, L., Ghetti, C., & Gold, C. (2016). Music therapy for preterm infants and their parents: A meta-analysis. Pediatrics, 138(3), http://dx.doi.org/10.1542/peds.2016-0971.
Bolívar Montes, L. A., & Montalvo, A. (2016). Uncertainty associated to parents of preterm infants hospitalized in neonatal intensive care units. Investigación y Educación en Enfermería, 34(2), 360-367, http://dx.doi.org/10.17533/udea.iee.v34n2a16.
Bradt, J., & Dileo, C. (2010). Music therapy for end-of-life care. Cochrane Database of Systematic Reviews, 1, CD007169, http://dx.doi.org/10.1002/14651858.CD007169.pub2.
California Health Care Foundation. (2006). Attitudes towards end-of-life care in California. Retrieved from http://www.chcf.org/publications/2006/11/attitudes-toward-endoflife-care-in-california.
Capitulo, K. L. (2005). Evidence for healing interventions with perinatal bereavement. The American Journal of Maternal/Child Nursing, 30(6), 389-396, https://doi.org/10.1097/00005721-200511000-00007.
Cook, D., & Rocker, G. (2014). Dying with dignity in the intensive care unit. New England Journal of Medicine, 370, 2506-2514, http://dx.doi.org/10.1056/NEJMra1208795.
Cortezzo, D. E., Sanders, M. R., Brownell, E. A., & Moss, K. (2015). End-of-life care in the neonatal intensive care unit: Experiences of staff and parents. American Journal of Perinatology, 32(8), 713-724, http://dx.doi.org/10.1055/s-0034-1395475.
Clayton, M., Sager, R., & Will, U. (2004). In time with the music: The concept of entrainment and its significance for ethnomusicology. ESEM CounterPoint, 1, 1-45.
Dissanayake, E. (2009). Root, leaf, blossom, or bole: Concerning the origin and adaptive function of music. In S. Malloch & C. Trevarthen (Eds.), Communicative musicality. Exploring the basis of human companionship (pp. 17-30). Oxford, England: Oxford University Press.
Dyer, K. A. (2005a). Identifying, understanding, and working with grieving parents in the NICU, part I: Identifying and understanding loss and the grief response. Neonatal Network, 24(3), 35-46.
Dyer, K. A. (2005b). Identifying, understanding, and working with grieving parents in the NICU, part II: Strategies. Neonatal Network, 24(4), 27-40.
Ettenberger, M. (2017a). Music therapy in the neonatal intensive care unit (NICU): Putting the families at the centre of care. British Journal of Music Therapy, 1-6, http://dx.doi.org/10.1177/139457516685881.
Ettenberger, M.. (2017b). Musicoterapia en la Unidad de Cuidados Intensivos Neonatal – Un enfoque centrado en la familia. [Music therapy in the neonatal intensive care unit – A family-centred approach]. In G. Federico & V. Tosto G (Eds.), Lo que suena en las sesiones. Musicoterapia, casos clínicos. Buenos Aires, Argentina: Editorial Kier. In press.
Ettenberger, M., Rojas, C., Odell-Miller, H., & Parker, M. (2016). Family-centred Music Therapy with preterm infants and their parents in the neonatal intensive care unit (NICU) in Colombia – A mixed-methods study. Nordic Journal of Music Therapy, http://dx.doi.org/10.1080/08098131.2016.
Ettenberger, M., Odell-Miller, H., Rojas, C., Torres, S., Parker, M., & Camargo, S. M. (2014). Music therapy with premature infants and their caregivers in Colombia – A mixed methods pilot study including a randomized trial. Voices: A World Forum for Music Therapy, 14(2), http://dx.doi.org/10.15845/voices.v14i2.756.
Fajardo, C. A., González, S., Zambosco, G., Cancela, M. J., Forero, L. V., Venegas, M., et al., & Lantos, J. (2012). End of life, death and dying in neonatal intensive care units in Latin America. Foundation Acta Pædiatrica, 101, 609-613, http://dx.doi.org/10.1111/j.1651-2227.2012.02596.x.
Flyvbjerg, B. (2006). Five misunderstandings about case-study research. Qualitative Inquiry, 12(2), 219-245.
Forrest, L. (2014). Your song, my song, our song: Developing music therapy programs for a culturally diverse community in home-based paediatric palliative care. Australian Journal of Music Therapy, 25, 15-27.
Forrest, L. (2011). Supportive cancer care at the end of life: Mapping the cultural landscape in palliative care and music therapy. Music and Medicine, 3(1), 9-14.
Gooding, J. S., Cooper, L. G., Blaine, A. I., Franck, L. S., Howse, J. L., & Berns, S. D. (2011). Family support and family-centered care in the neonatal intensive care unit: Origins, advances, impact. Seminars in Perinatology, 35(1), 20-28, http://dx.doi.org/10.1053/j.semperi.2010.10.004.
Gutgsell, K. J., Schluchter, M., Margevicius, S., DeGolia, P. A., McLaughlin, B., Harris, M., et al., & Wiencek, C. (2013). Music therapy reduces pain in palliative care patients: A randomized controlled trial. Journal of Pain and Symptom Management, 45(5), 822-831, http://dx.doi.org/10.1016/j.jpainsymman.2012.05.008.
Hartling, L., Shaik, M. S., Tjosvold, L., Leicht, R., Liang, Y., & Kumar, M. (2009). Music for medical indications in the neonatal period: A systematic review of randomised controlled trials. Archives of Diseases in Childhood. Fetal and Neonatal Edition, 94, 349-354, http://dx.doi.org/10.1136/adc.2008.148411.
Harvey, S., Snowdon, C., & Elbourne, D. (2008). Effectiveness of bereavement interventions in neonatal intensive care: A review of the evidence. Seminars in Fetal & Neonatal Medicine, 13, 341-356, http://dx.doi.org/10.1016/j.siny.2008.03.011.
Haslbeck, F. (2016). Three little wonders. Music therapy with families in neonatal care. In S. Lindhal (Ed.), Music Therapy with Families (pp. 19-44). London, England: Jessica Kingsley Publishers.
Haslbeck, F. (2013). The interactive potential of creative music therapy with premature infants and their parents: A qualitative analysis. Nordic Journal of Music Therapy, 23(1), 36-70, http://dx.doi.org/10.1080/08098131.2013.790918.
Haslbeck, F. (2012). Music therapy for premature infants and their parents: an integrative review. Nordic Journal of Music Therapy, 21(3), 1-38, http://dx.doi.org/10.1080/08098131.2011.648653.
Hilliard, R. E. (2005). Music therapy in hospice and palliative care: A review of the empirical data. eCAM, 2(2), 173-178, http://dx.doi.org/10.1093/ecam/neh076.
Hodges, A. L., & Wilson, L. L. (2010). Preterm infants’ responses to music: An integrative literature review. Southern Online Journal of Nursing Research, 10(3), http://www.snrs.org.
Horne-Thompson, A., & Grocke, D. (2008). The effect of music therapy on anxiety in patients who are terminally ill. Journal of Palliative Medicine, 11, 582-590.
Kenner, C., Press, J., & Ryan, D. (2015). Recommendations for palliative and bereavement care in the NICU: A family-centered integrative approach. Journal of Perinatology, 35, 19-23, http://dx.doi.org/10.1038/jp.2015.145.
Kersting, A., & Wagner, B. (2012). Complicated grief after perinatal loss. Dialogues in Clinical Neuroscience, 14(2), 187-194.
Kobler, K., Limbo, R., & Kavanaugh, K. (2007). Meaningful moments. The use of ritual in perinatal and pediatric death. The American Journal of Maternal/Child Nursing, 32(5), 288-295.
Kordovan, S., Preissler, P., Kamphausen, A., Bokemeyer, C., & Oechsle, K. (2016). Prospective study on music therapy in terminally ill cancer patients during specialized inpatient palliative care. Journal of Palliative Medicine, 19(4), 394-399, https://doi.org/10.1089/jpm.2015.0384.
Krueger, C. (2010). Exposure to maternal voice in preterm infants: A review. Advances in Neonatal Care, 10(1), 13-20, http://dx.doi.org/10.1097/ANC.0b013e3181cc3c69.
Kuo, D. Z., Houtrow, A. J., Arango, P., Kuhlthau, K. A., Simmons, J. M., & Neff, J. M. (2012). Family-centered care: Current applications and future directions in pediatric health care. Maternal & Child Health Journal, 16, 297-305, http://dx.doi.org/10.1007/s10995-011-0751-7.
Luce, J. M. (2010). End-of-life decision making in the intensive care unit. American Journal of Respiratory Critical Care Medicine, 182, 6-11, http://dx.doi.org/10.1164/rccm.201001-0071CI.
Mancini, A., Uthaya, S., Beardsley, C., Wood, D., & Modi, N. (2014). Practical guidance for the management of palliative care on neonatal units. RCPCH, Retrieved from, http://www.rcpch.ac.uk/news/palliative-care-neonatal-units-first-guidance-published-uk.
McConnell, T., Scott, D., & Porter, S. (2016). Music therapy for end-of-life care: An updated systematic review. Palliative Medicine, 30(9), 877-883, http://dx.doi.org/10.1177/0269216316635387.
Meadow, W., Pohlman, A., Frain, L., Ren, Y., Kress, J. P., Teuteberg, W., & Hall, J. (2011). Power and limitations of daily prognostications of death in the medical intensive care unit. Critical Care Medicine, 39(3), 474-479, http://dx.doi.org/10.1097/CCM.0b013e318205df9b.
Merker, B. (2009). Ritual foundations of human umiqueness. In S. Malloch & C. Trevarthen (Eds.), Communicative musicality. Exploring the basis of human companionship (pp. 45-60). Oxford, England: Oxford University Press.
Mondanaro, J. (2016). Multiculturally focused medical music psychotherapy in affirming identity to facilitate optimal coping during hospitalization. Music Therapy Perspectives, 34, 154-160, https://doi.org/10.1093/mtp/miw019.
Mondanaro, J., Ettenberger, M., & Park, L. (2016). Mars rising: Music therapy and the increasing presence of fathers in the NICU. Music & Medicine, 8(3), 96-107.
Mullen, J. E., Reynolds, M. R., & Larson, J. S. (2015). Caring for pediatric patients’ families at the child’s end of life. Critical Care Nurse, 35(6), 46-55, http://dx.doi.org/http://dx.doi.org/10.4037/ccn2015614.
National Consensus Project for Quality Palliative Care. (2013). Palliative care clinical practice guidelines for quality palliative care (3rd ed.). Retrieved from http://www.nationalconsensusproject.org/NCP_Clinical_Practice_Guidelines_3rd_Edition.pdf
NHS. (2016). End of life care. Retrieved from http://www.nhs.uk/Planners/end-of-life-care/Pages/what-it-involves-and-when-it-starts.aspx
OKelly, J. (2002). Music therapy in palliative care. International Journal of Palliative Nursing, 8(3), 130-136.
Papadimos, T. J., Maldonado, Y., Tripathi, R. S., Kothari, D. S., & Rosenberg, A. L. (2011). An overview of end–of–life issues in the intensive care unit. International Journal of Critical Illness and Injury Science, 1(2), 138-146, http://dx.doi.org/10.4103/2229-5151.84801.
Romesberg, T. L. (2004). Understanding grief: A component of neonatal palliative care. Journal of Hospice and Palliative Nursing, 6(3), 161-170.
Sahni, J., & Phelps, S. J. (2011). Nebulized furosemide in the treatment of bronchopulmonary dysplasia in preterm infants. Journal of Pediatric Pharmacology and Therapeutics, 16(1), 14-22.
Shelkowitz, E., Vessella, S. L., O’Reilly, P., Tucker, R., & Lechner, B. E. (2015). Counseling for personal care options at neonatal end of life: A quantitative and qualitative parent survey. BMC Palliative Care, 14, 1-11, http://dx.doi.org/10.1186/s12904-015-0063-6.
Shoemark, H., & WCMT 2014 NICU Music Therapy Roundtable Group. (2015). culturally transformed music therapy in the perinatal and paediatric neonatal intensive care unit: An international report. Music & Medicine, 7(2), 35-36.
Shoemark, H., & Daern, T. (2008). Keeping parents at the centre of family centred music therapy with hospitalized infants. Australian Journal of Music Therapy, 19, 3-24.
Shoemark, H. (2004). Family-centered music therapy for infants with complex medical and surgical needs. In M. Nöcker-Ribaupierre (Ed.), Music therapy for premature and newborn infants (pp. 141-158). Gilsum, NH: Barcelona Publishers.
Standley, J. M. (2012). Music therapy research in the NICU: An updated meta-analysis. Neonatal Network, 31(5), 311-316, http://dx.doi.org/10.1891/0730-08126.96.36.1991.
Truog, R. D., Campbell, M. L., Curtis, J. R., Haas, C. E., Luce, J. M., Rubenfeld, G. D., & Kaufman, D. C. (2008). Recommendations for end-of-life care in the intensive care unit: A consensus statement by the American College of Critical Care Medicine. Critical Care Medicine, 36(3), 953-963, http://dx.doi.org/10.1097/CCM.0B013E3181659096.
Ullsten, A., Eriksson, M., Klässbo, M., & Volgsten, U. (2017). Live music therapy with lullaby singing as affective support during painful procedures: A case study with microanalysis. Nordic Journal of Music Therapy, 26(2), 142-166, http://dx.doi.org/10.1080/08098131.2015.1131187.
van der Heijden, M. J. E., Oliai, S., Jeekel, J., Reiss, I. K. M., Hunink, M. G. M., & van, M. (2016). Do hospitalized premature infants benefit from music interventions? A systematic review of randomized controlled trials. PLoS ONE, 11(9), e0161848, http://dx.doi.org/10.1371/journal.pone.0161848.
WHO. (2016). WHO definition of palliative care. Retrieved from http://www.who.int/cancer/palliative/definition/en/
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