Hostname: page-component-cd9895bd7-fscjk Total loading time: 0 Render date: 2024-12-22T18:05:22.821Z Has data issue: false hasContentIssue false
  • English
  • Français

Aligning guidelines and medical practice: Literature review on pediatric palliative care guidelines

Published online by Cambridge University Press:  09 January 2017

Eva De Clercq ,
Michael Rost ,
Nadia Pacurari ,
Bernice S. Elger  and
Tenzin Wangmo
Eva De Clercq*
Affiliation:
Institute for Biomedical Ethics, University of Basel, Basel, Switzerland
Michael Rost
Affiliation:
Institute for Biomedical Ethics, University of Basel, Basel, Switzerland
Nadia Pacurari
Affiliation:
Institute for Biomedical Ethics, University of Basel, Basel, Switzerland
Bernice S. Elger
Affiliation:
Institute for Biomedical Ethics, University of Basel, Basel, Switzerland
Tenzin Wangmo
Affiliation:
Institute for Biomedical Ethics, University of Basel, Basel, Switzerland
*
Address correspondence and reprint requests to Eva De Clercq, Institute for Biomedical Ethics,University of Basel, Bernoullistrasse 28, CH-4056 Basel, Switzerland. E-Mail: [email protected].
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective:

Palliative care for children is becoming an important subspecialty of healthcare. Although concurrent administration of curative and palliative care is recommended, timely referral to pediatric palliative care (PPC) services remains problematic. This literature review aims to identify barriers and recommendations for proper implementation of palliative care for children through the looking glass of PPC guidelines.

Method:

To identify studies on PPC guidelines, five databases were searched systematically between 1960 and 2015: Scopus, PubMed, PsycINFO, the Web of Science, and CINAHL. No restrictions were placed on the type of methodology employed in the studies.

Results:

Concerning barriers, most of the papers focused on gaps within medical practice and the lack of evidence-based research. Common recommendations therefore included: training and education of healthcare staff, formation of a multidisciplinary PPC team, research on the benefits of PPC, and raising awareness about PPC. A small number of publications reported on the absence of clear guidance in PPC documents regarding bereavement care, as well as on the difficulties and challenges involved in multidisciplinary care teams.

Significance of results:

Our results indicate that a critical assessment of both the research guidelines and medical practice is required in order to promote timely implementation of PPC for pediatric patients.

Keywords

PediatricsPalliative careGuidelinesBarriersRecommendations
Type
Review Article
Information
Palliative & Supportive Care , Volume 15 , Issue 4 , August 2017 , pp. 474 - 489
Copyright
Copyright © Cambridge University Press 2017 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

REFERENCES

ACT (Association for Children with Life-Threatening and Terminal Conditions and Their Families) and the RCPCH (Royal College of Paediatrics and Child Health) (1997). A Guide to the Development of Children's Palliative Care Services, 1st ed. London: RCPCH.Google Scholar
ACT (Association for Children with Life-Threatening and Terminal Conditions and Their Families) and the RCPCH (Royal College of Paediatrics and Child Health) (2003). A Guide to the Development of Children's Palliative Care Services, 2nd ed. Bristol: ACT.Google Scholar
ACT (Association for Children's Palliative Care) (2009 a). A guide to the development of children's palliative care services, 3rd ed. Bristol: ACT. Available from http://www.togetherforshortlives.org.uk/assets/0001/1649/ACT_Guide_to_Developing_Services.pdf.Google Scholar
ACT (Association for Children's Palliative Care) (2009 b). Integrated multi-agency care pathways for children with life-limiting or life-threatening conditions. Bristol: ACT.Google Scholar
American Academy of Pediatrics (AAP) (2000). Palliative care for children. Pediatrics, 106(2), 351–357. Available from http://pediatrics.aappublications.org/content/106/2/351.Google Scholar
Ashby, M.A., Kosky, R.J., Laver, H.T., et al. (1991). An enquiry into death and dying at the Adelaide Children's Hospital: A useful model? The Medical Journal of Australia, 154(3), 165–170.Google Scholar
Baker, J.N., Hinds, P.S., Spunt, S.L., et al. (2007). Integration of palliative care practices into the ongoing care of children with cancer: Individualized care planning and coordination. Pediatric Clinics of North America, 55(1), 223–250. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2577813/.Google Scholar
Benini, F., Spizzichino, M., Trapanotto, M., et al. (2008). Pediatric palliative care. Italian Journal of Pediatrics, 34(4), 4. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2687538/.Google Scholar
Bergstraesser, E. (2013). Pediatric palliative care: A reflection on terminology. Palliative Care, 21(7), 31–36. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4147766/.Google Scholar
Bergstraesser, E., Inglin, S., Abbruzzese, R., et al. (2013 a). The needs of professionals in the palliative care of children and adolescents. European Journal of Pediatrics, 172(1), 111–118. Epub ahead of print Dec 4, 2012.Google Scholar
Bergstraesser, E., Hain, R.D. & Pereira, J.L. (2013 b). The development of an instrument that can identify children with palliative care needs. The Paediatric Palliative Screening Scale (PaPaS Scale): A qualitative study approach. BMC Palliative Care, 12(1), 12–20. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3663726/.Google Scholar
Brown, C. (2011). The barriers to and evidence for palliative care. Journal of Pediatric Hematology/Oncology, 33(Suppl. 2), S132–S135.Google Scholar
Cacchione, P. (2000). What's another word for euphemism? The American Journal of Hospice & Palliative Care, 17(1), 6–7.Google Scholar
Children's International Project on Palliative/Hospice Services (ChiPPS) (2001). A call for change: Recommendations to improve the care of children living with life-threatening conditions. Available from www.nhpco.org.Google Scholar
Collins, J.J. (2002). Palliative care and the child with cancer. Hematology/Oncology Clinics of North America, 16(3), 657–670.Google Scholar
Corr, C.A. & Corr, D.M. (1985). Situations involving children: A challenge for the hospice movement. The Hospice Journal, 1(2), 63–77.Google Scholar
Craft, A. & Killen, S. (2007). Palliative care services for children and young people in England: An independent review for the Secretary of State for Health. London: Department of Health. Available from https://www.nsf.no/Content/662668/PALLIATIVE%20CARE%20SERVICES%20FOR%20CHILDREN.pdf.Google Scholar
Dangel, T. (2002). The status of pediatric palliative care in Europe. Journal of Pain and Symptom Management, 24(2), 160–165. Available from http://www.jpsmjournal.com/article/S0885-3924(02)00466-9/pdf.Google Scholar
Danvers, L., Freshwater, D., Cheater, F., et al. (2003). Providing a seamless service for children with life-limiting illness: Experiences and recommendations of professional staff at the Diana Princess of Wales Children's Community Service. Journal of Clinical Nursing, 12(3), 351–359.Google Scholar
Davies, B. (2014). Palliative care for children. In Death, dying and bereavement: Contemporary perspectives, institutions and practices. Stillion, J. & Attig, T. (eds.), pp. 165–180. New York: Springer Science.Google Scholar
Davies, B., Brenner, P., Orloff, S., et al. (2002). Addressing spirituality in pediatric hospice and palliative care. Journal of Palliative Care, 18(1), 59–67.Google Scholar
Davies, B., Sehring, S., Partridge, J., et al. (2008). Barriers to palliative care for children: Perceptions of pediatric health care providers. Pediatrics, 121(2), 282–288.Google Scholar
Di Gallo, A. & Burgin, D. (2006). Supporting severely ill and dying children. Suggestions for practical interventions [in German]. Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz, 49(11), 1142–1148.Google Scholar
Downing, J., Jassal, S.S., Mathews, L., et al. (2015). Pediatric pain management in palliative care. Pain Management, 5(1), 23–35.Google Scholar
Eggly, S., Meert, K.L., Berger, J., et al. (2011). A framework for conducting follow-up meetings with parents after a child's death in the pediatric intensive care unit. Pediatric Critical Care Medicine, 12(2), 147–152. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3285236/.Google Scholar
Epelman, C.L. (2012). End-of-life management in pediatric cancer. Current Oncology Reports, 14(2), 191–196.Google Scholar
Fernandez, C., Fraser, G.A., Freeman, C., et al. (2011). Principles and recommendations for the provision of healthcare in Canada to adolescent and young adult-aged cancer patients and survivors. Journal of Adolescent and Young Adult Oncology, 1(1), 53–59. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3621594/.Google Scholar
Feudtner, C., Womer, J., Augustin, R., et al. (2013). Pediatric palliative care programs in children's hospitals: A cross-sectional national survey. Pediatrics, 132(6), 1063–1070. Epub ahead of print Nov 4. Available from http://pediatrics.aappublications.org/content/132/6/1063.long.Google Scholar
Foster, T. (2007). Pediatric palliative care revisited: A vision to add life. Journal of Hospice & Palliative Nursing, 9(4), 212–219.Google Scholar
Foster, T.L., Bell, C.J. & Gilmer, M.J. (2012). Symptom management of spiritual suffering in pediatric palliative care. Journal of Hospice & Palliative Nursing, 14(2), 109–117.Google Scholar
Fowler, K., Poehling, K., Billheimer, D., et al. (2006). Hospice referral practices for children with cancer: A survey of pediatric oncologists. Journal of Clinical Oncology 24(7), 1099–1104.Google Scholar
Frager, G. (1997). Palliative care and terminal care of children. Child and Adolescent Psychiatric Clinics of North America, 6, 889–909.Google Scholar
Freyer, D.R., Kuperberg, A., Sterken, D.J., et al. (2006). Multidisciplinary care of the dying adolescent. Child and Adolescent Psychiatric Clinics of North America, 15, 693–715.Google Scholar
Gardiner, C., Cobb, M., Gott, M., et al. (2011). Barriers to providing palliative care for older people in acute hospitals. Age and Ageing, 40, 233–238.Google Scholar
Gethins, M. (2011). Pediatric palliative care in Europe expands. Journal of the National Cancer Institute, 104(1), 10–11. Epub ahead of print Dec 14. Available from http://jnci.oxfordjournals.org/content/104/1/10.full.pdf+html.Google Scholar
Goldman, A., Hain, R. & Liben, S. (2006). Oxford handbook of palliative care for children. Oxford: Oxford University Press.Google Scholar
Gowan, D. (2003). End-of-life issues of children. Pediatric Transplantation, 7(Suppl. 3), 40–43.Google Scholar
Harrop, E. & Edwards, C. (2013). How and when to refer a child for specialist paediatric palliative care. Archives of Disease in Childhood: Education and Practice Edition, 98(6), 202–208. Epub ahead of print Aug 23.Google Scholar
Heath, J.A., Clarke, N.E., McCarthy, M., et al. (2009). Quality of care at the end of life in children with cancer. Journal of Paediatrics and Child Health, 45, 656–659.CrossRefGoogle ScholarPubMed
Houlahan, K.E., Branowicki, P.A., Mack, J.W., et al. (2006). Can end-of-life care for the pediatric patient suffering with escalating and intractable symptoms be improved? Journal of Pediatric Oncology Nursing, 23(1), 45–51. Available from http://jpo.sagepub.com/content/23/1/45.long.Google Scholar
Hsiao, J.L., Evan, E.E. & Zeltzer, L.K. (2007). Parent and child perspectives on physician communication in pediatric palliative care. Palliative & Supportive Care, 5(4), 355–365.Google Scholar
Hubble, R.A., Ward-Smith, P., Christenson, K., et al. (2009). Implementation of a palliative care team in a pediatric hospital. Journal of Pediatric Health Care, 23(2), 126–131. Epub ahead of print Apr 14, 2007.Google Scholar
IMPaCCT (2007). IMPaCCT: Standards for paediatric palliative care in Europe. European Journal of Palliative Care, 14(3), 109–114. Available from http://www.eapcnet.eu/LinkClick.aspx?fileticket=ShMQyZuTfqU%3D.Google Scholar
Institute of Medicine (IOM) (2003). When children die: Improving palliative and end-of-life care for children and their families. In Report of the committee on palliative and end-of-life care for children and their families. Field, M.J., & Behrman, R.E. (eds.). Washington, DC: National Academies Press.Google Scholar
Janssen, G., Friedland, C., Richter, U., et al. (2004). Out-patient palliative care of children with cancer and their families [in German]. Klinische Pädiatrie, 216(3), 183–188.Google Scholar
Johnston, D., Nagel, K., O'Halloran, C. et al. (2007). Underutilization of palliative care resources for pediatric oncology patients in Canada: Results of a children's oncology group palliative medicine committee survey. Supportive Palliative Cancer Care, 3, 77–82.Google Scholar
Joint Commission on Accreditation of Hospitals (JCAHO). (2001). Management & treatment of pain: Issues and controversies. Oakbrook Terrace, IL: JCAHO.Google Scholar
Jones, B.L., Contro, N. & Koch, K.D. (2014). The duty of the physician to care for the family in pediatric palliative care: Context, communication, and caring. Pediatrics, 133(Suppl. 1), S8–S15. Available from http://pediatrics.aappublications.org/content/133/Supplement_1/S8.Google Scholar
Kang, T., Hoehn, K.S., Licht, D.J., et al. (2005). Pediatric palliative, end-of-life, and bereavement care. Pediatric Clinics of North America, 52(4), 1029–1046.Google Scholar
Kang, T.I., Munson, D., Hwang, J., et al. (2014). Integration of palliative care into the care of children with serious illness. Pediatrics in Review, 35(8), 318–325; quiz 326.Google Scholar
Kassam, A., Skiadaresis, J., Habib, S., et al. (2013). Moving toward quality palliative cancer care: Parent and clinician perspectives on gaps between what matters and what is accessible. Journal of Clinical Oncology, 31(7), 910–915. Epub ahead of print Nov 26, 2012. Available from http://ascopubs.org/doi/pdf/10.1200/jco.2012.44.8936.Google Scholar
Kavalieratos, D., Mitchell, E.M., Carey, T.S., et al. (2014). Not the “grim reaper service”: An assessment of provider knowledge, attitudes, and perceptions regarding palliative care referral barriers in heart failure. Journal of the American Heart Association, 3(1), e000544. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3959712/.Google Scholar
Keele, L., Keenan, H.T., Sheetz, J, et al. (2013). Differences in characteristics of dying children who receive and do not receive palliative care. Pediatrics, 132(1), 72–78. Available from http://pediatrics.aappublications.org/content/pediatrics/early/2013/06/05/peds.2013-0470.full.pdf.Google Scholar
Knapp, C. & Thompson, L. (2012). Factors associated with perceived barriers to pediatric palliative care: A survey of pediatricians in Florida and California. Palliative Medicine, 26(3), 268–274. Epub ahead of print Jun 16, 2011.Google Scholar
Lee, K.J. & Dupree, C.Y. (2008). Staff experiences with end-of-life care in the pediatric intensive care unit. Journal of Palliative Medicine, 11(7), 986–990.Google Scholar
Levine, D.,. Lam, C., Cunningham, M., et al. (2013). Best practices for pediatric palliative cancer care: A primer for clinical providers. The Journal of Supportive Oncology, 11(3), 114–125.Google Scholar
Liben, S. (1996). Pediatric palliative medicine: Obstacles to overcome. Journal of Palliative Care, 12(3), 24–28.Google Scholar
Mandac, C. & Battista, V. (2014). Contributions of palliative care to pediatric patient care. Seminars in Oncology Nursing, 30(4), 212–226.Google Scholar
Masera, G., Spinetta, J.J., Jankovic, M., et al. (1999). Guidelines for assistance to terminally ill children with cancer: A report of the SIOP Working Committee on Psychosocial Issues in Pediatric Oncology. Medical and Pediatric Oncology, 32, 44–48.Google Scholar
Matthews, K., Gambles, M., Ellershaw, J.E., et al. (2006). Developing the Liverpool Care Pathway for the dying child. Paediatric Nursing, 18(1), 18–21.Google Scholar
Maynard, L. & Lynn, D. (2014). Innovative approach to providing 24/7 palliative care for children. Nursing Children and Young People, 26(6), 27–34.Google Scholar
McNamara-Goodger, K. & Cooke, R. (2009). Children's and young people's palliative care: Good practice guidelines. Primary Health Care, 19(2), 40–48. Available from http://journals.rcni.com/doi/pdfplus/10.7748/phc2009.03.19.2.40.c6898.Google Scholar
Meyer, E.C., Ritholz, M.D., Burns, J.P., et al. (2006). Improving the quality of end-of-life care in the pediatric intensive care unit: Parents' priorities and recommendations. Pediatrics, 117(3), 649–657.Google Scholar
Midson, R. & Carter, B. (2010). Addressing end-of-life care issues in a tertiary treatment centre: Lessons learned from surveying parents' experience. Journal of Child Health Care, 14(1), 52–66.Google Scholar
Mitchell, S. & Dale, J. (2015). Advance care planning in palliative care: A qualitative investigation into the perspective of paediatric intensive care unit staff. Palliative Medicine, 29(4), 371–379. Epub ahead of print Feb 26.Google Scholar
Moher, D., Liberati, A., Tetzlaff, J., et al. (2009). Preferred reporting items for systematic reviews and meta-analyses: The PRISMA statement. Annals of Internal Medicine, 151(4), 264–269. Epub ahead of print Jul 20. Available from https://www.ncbi.nlm.nih.gov/books/NBK209508/.Google Scholar
Moody, K., Siegel, L., Scharbach, K., et al. (2011). Pediatric palliative care. Primary Care, 38(2), 327–361.Google Scholar
Mooney-Doyle, K. & Deatrick, J.A. (2016). Parenting in the face of childhood life-threatening conditions: The ordinary in the context of the extraordinary. Palliative & Supportive Care, 14(3), 187–198. Epub ahead of print Oct 14, 2015.Google Scholar
Pastrana, T., Junger, S., Ostgathe, C., et al. (2008). A matter of definition: Key elements identified in a discourse analysis of definitions of palliative care. Palliative Medicine, 22(3), 222–232.Google Scholar
Perilongo, G., Rigon, L., Sainati, L., et al. (2001). Topical topic. Palliative and terminal care for dying children: Proposals for better care. Medical and Pediatric Oncology, 37(1), 59–61.CrossRefGoogle Scholar
Postovsky, S. & Ben Arush, M.W. (2004). Care of a child dying of cancer: The role of the palliative care team in pediatric oncology. Pediatric Hematology and Oncology, 21(1), 67–76.Google Scholar
Pritchard, S., Cuvelier, G., Harlos, M., et al. (2011). Palliative care in adolescents and young adults with cancer. Cancer, 117(Suppl. 10), 2323–2328. Epub ahead of print Apr 26. Available from http://onlinelibrary.wiley.com/doi/10.1002/cncr.26044/full.Google Scholar
Remke, S.S. & Chrastek, R. (2007). Improving care in the home for children with palliative care needs. Home Healthcare Nurse, 25(1), 45–51; quiz 52–53.Google Scholar
Remke, S.S. & Schermer, M.M. (2012). Team collaboration in pediatric palliative care. Journal of Social Work in End-of-Life & Palliative Care, 8(4), 286–296.Google Scholar
Royal College of Paediatrics and Child Health (RCPCH) (2005). A charter for paediatricians. London: RCPCH.Google Scholar
Rushton, C.H., Rede, E., Hall, B., et al. (2006). Interdisciplinary interventions to improve pediatric palliative care and reduce health care professional suffering. Journal of Palliative Medicine, 9(4), 922–933.Google Scholar
Schmidt, K. (2011). Pediatric palliative care: Starting a hospital-based program. Pediatric Nursing, 37(5), 268–274.Google Scholar
Shaw, T.M. (2012). Pediatric palliative pain and symptom management. Pediatric Annals, 41(8), 329–334.Google Scholar
Sheetz, M.J. & Sontag-Bowman, M.-A. (2012). Parents' perceptions of a pediatric palliative program. The American Journal of Hospice & Palliative Care, 30(3), 291–296. Epub ahead of print Jun 13.Google Scholar
Shelton, J. & Jackson, G.P. (2011). Palliative care and pediatric surgery. The Surgical Clinics of North America, 91(2), 419–428.Google Scholar
Solomon, M.Z., Sellers, D.E., Heller, K.S., et al. (2005). New and lingering controversies in pediatric end-of-life care. Pediatrics, 116(4), 872–883.Google Scholar
Stayer., B. (2012). Pediatric palliative care: A conceptual analysis for pediatric nursing practice. Journal of Pediatric Nursing, 27(4), 350–356. Epub ahead of print Jul 13, 2001.Google Scholar
Steele, R., Bosma, H., Johnston, M.F., et al. (2008 a). Research priorities in pediatric palliative care: A Delphi study. Journal of Palliative Care, 24(4), 229–239.Google Scholar
Steele, R., Derman, S., Cadell, S., et al. (2008 b). Families' transition to a Canadian paediatric hospice, part two: Results of a pilot study. International Journal of Palliative Nursing, 14(6), 287–295. Available from http://www.magonlinelibrary.com/doi/pdf/10.12968/ijpn.2008.14.6.30024.Google Scholar
Stephenson, J. (2000). Palliative and hospice care needed for children with life-threatening conditions. The Journal of the American Medical Association, 284(19), 2437–2438. Available from http://jamanetwork.com/journals/jama/article-abstract/193276.Google Scholar
Tan, G.H., Totapally, B.R., Torbati, D., et al. (2006). End-of-life decisions and palliative care in a children's hospital. Journal of Palliative Medicine, 9(2), 332–342.Google Scholar
Thompson, L.A., Knapp, C., Madden, V., et al. (2009). Pediatricians' perceptions of and preferred timing for pediatric palliative care. Pediatrics, 123(5), e777–e782.Google Scholar
Thompson, L.A., Meinert, E., Barker, K., et al. (2013). Chronic pain management as a barrier to pediatric palliative care. The American Journal of Hospice & Palliative Care, 30(8), 764–767. Epub ahead of print Jan 16.Google Scholar
Toce, S. & Collins, M.A. (2003). The FOOTPRINTS model of pediatric palliative care. Journal of Palliative Medicine, 6(6), 989–1000.Google Scholar
Trotta, R.L. (2007). Quality of death: A dimensional analysis of palliative care in the nursing home. Journal of Palliative Medicine, 10(5), 1116–1127.Google Scholar
Twamley, K., Craig, F., Kelly, P., et al. (2014). Underlying barriers to referral to paediatric palliative care services: Knowledge and attitudes of health care professionals in a paediatric tertiary care centre in the United Kingdom. Journal of Child Health Care, 18(1), 19–30. Epub ahead of print Apr 22, 2013. Available from http://chc.sagepub.com/content/18/1/19.long.Google Scholar
World Health Organization (WHO) (1990). Cancer pain relief and palliative care: Report of a WHO expert committee. Geneva: WHO.Google Scholar
World Health Organization (WHO) (1998 a). Cancer pain relief and palliative care in children. Geneva: WHO.Google Scholar
World Health Organization (WHO) (1998 b). WHO definition of palliative care for children. Geneva: WHO. Available from http://www.who.int/cancer/palliative/definition/en/.Google Scholar
World Health Organization (WHO) (2002). Revised definition of palliative care. Available from https://www.hospiceworld.org/definitions.htm.Google Scholar
Yazdani, S., Evan, E., Roubinov, D., et al. (2010). A longitudinal method of teaching pediatric palliative care to interns: Preliminary findings regarding changes in interns' comfort level. Palliative & Supportive Care, 8(1), 35–40. Epub ahead of print Feb 18.Google Scholar