108
Views
0
CrossRef citations to date
0
Altmetric
Review

Integrating palliative care into end-of-life care for children with cancer

, , &
Pages 289-301 | Received 12 Feb 2016, Accepted 13 May 2016, Published online: 07 Jun 2016

References

  • Ries LAG, Smith MA, Gurney JG, et al. Cancer incidence and survival among children and adolescents: United States SEER Program 1975–1995, National Cancer Institute, SEER Program. Bethesda (MD): NIH Pub. No. 99-4649; 1999.
  • Howlader N, Noone AM, Krapcho M, et al. SEER cancer statistics review, 1975–2012. Bethesda (MD): National Cancer Institute; 2015 [cited 2016 Apr 28]. Available from: http://seer.cancer.gov/csr/1975_2012/
  • WHO definition of palliative care. 2016 [cited 2016 Apr 28]. Available from: http://www.who.int/cancer/palliative/definition/en/
  • What is pediatric palliative care? 2012 [cited 2016 Apr 28]. Available from: http://www.getpalliativecare.org/whatis/pediatric/
  • American Academy of Pediatrics Section on Hospice and Palliative Medicine and Committee on Hospital Care. Pediatric palliative care and hospice care commitments, guidelines, and recommendations. Pediatrics. 2013;132:966–972. doi:10.1542/peds.2013-2731.
  • Institute of Medicine. Dying in America: improving the quality and honoring individual preferences near the end of life. Vol. 638. Washington (DC): The National Academies Press; 2014.
  • Palliative Care Special Interest Group. American Society for Pediatric Hematology Oncology (ASPHO). 2015 [cited 2015 Dec 9]. Available from: http://aspho.org/special-interest-groups/palliative-care
  • Committee on End-of-Life Care for Children and their Families. When children die: improving palliative and end-of-life care for children and their families. Washington (DC): National Academies of Science; 2002.
  • A National Framework and Preferred Practices for Palliative and Hospice Care Quality. Available from: www.qualityforum.org
  • Baker JN, Hinds PS, Spunt SL, et al. Integration of palliative care practices into the ongoing care of children with cancer: individualized care planning and coordination. Pediatr Clin North Am. 2008;55:223–250, xii. doi:10.1016/j.pcl.2007.10.011.
  • Johnson L, Snaman JM, Cupit MC, et al. End-of-life care for hospitalized children. Pediatr Clin North Am. 2014;61:835–854. doi:10.1016/j.pcl.2014.04.012.
  • Weaver MS, Heinze KE, Kelly KP, et al. Palliative care as a standard of care in pediatric oncology. Pediatr Blood Cancer. 2015;62(Suppl 5):S829–S833. doi:10.1002/pbc.25695.
  • Weaver MS, Heinze KE, Bell CJ, et al. Establishing psychosocial palliative care standards for children and adolescents with cancer and their families: an integrative review. J Palliat Med. 2016;30:212–223. doi:10.1177/0269216315583446.
  • Xafis V, Wilkinson D, Sullivan J. What information do parents need when facing end-of-life decisions for their child? A meta-synthesis of parental feedback. BMC Palliat Care. 2015;14:19. doi:10.1186/s12904-015-0024-0.
  • Contro NA, Larson J, Scofield S, et al. Hospital staff and family perspectives regarding quality of pediatric palliative care. Pediatrics. 2004;114:1248–1252. doi:10.1542/peds.2003-0857-L.
  • Weaver MS, Baker JN, Gattuso JS, et al. Adolescents’ preferences for treatment decisional involvement during their cancer. Cancer. 2015;121:4416–4424. doi:10.1002/cncr.29663.
  • Nitschke R. Regarding guidelines for assistance to terminally ill children with cancer: report of the SIOP working committee on psychosocial issues in pediatric oncology. Med Pediatr Oncol. 2000;34:271–273.
  • Nitschke R, Meyer WH, Sexauer CL, et al. Care of terminally ill children with cancer. Med Pediatr Oncol. 2000;34:268–270.
  • Hinds PS, Oakes L, Furman W, et al. End-of-life decision making by adolescents, parents, and healthcare providers in pediatric oncology: research to evidence-based practice guidelines. Cancer Nurs. 2001;24:122–134.
  • Levetown M. Communicating with children and families: from everyday interactions to skill in conveying distressing information. Pediatrics. 2008;121:e1441–e1460. doi:10.1542/peds.2008-0565.
  • Snaman JM, Torres C, Duffy B, et al. Parental perspectives of communication at the end of life at a pediatric oncology institution. J Palliat Med. 2016;19:326–332. doi:10.1089/jpm.2015.0253.
  • Bluebond-Langner M, Belasco JB, Goldman A, et al. Understanding parents’ approaches to care and treatment of children with cancer when standard therapy has failed. J Clin Oncol. 2007;25:2414–2419. doi:10.1200/JCO.2006.08.7759.
  • Young B, Ward J, Salmon P, et al. Parents’ experiences of their children’s presence in discussions with physicians about leukemia. Pediatrics. 2011;127:e1230–e1238. doi:10.1542/peds.2010-2402.
  • Young B, Hill J, Gravenhorst K, et al. Is communication guidance mistaken? Qualitative study of parent-oncologist communication in childhood cancer. Br J Cancer. 2013;109:836–843. doi:10.1038/bjc.2013.413.
  • Masera G, Chesler MA, Jankovic M, et al. SIOP working committee on psychosocial issues in pediatric oncology: guidelines for communication of the diagnosis. Med Pediatr Oncol. 1997;28:382–385.
  • Billings JA, Bernacki R. Strategic targeting of advance care planning interventions: the Goldilocks phenomenon. JAMA Intern Med. 2014;174:620–624. doi:10.1001/jamainternmed.2013.14384.
  • Ferrell B, Connor SR, Cordes A, et al. The national agenda for quality palliative care: the National Consensus Project and the National Quality Forum. J Pain Symptom Manage. 2007;33:737–744. doi:10.1016/j.jpainsymman.2007.02.024.
  • Wolfe J, Klar N, Grier HE, et al. Understanding of prognosis among parents of children who died of cancer: impact on treatment goals and integration of palliative care. Jama. 2000;284:2469–2475.
  • Baker JN, Barfield R, Hinds PS, et al. A process to facilitate decision making in pediatric stem cell transplantation: the individualized care planning and coordination model. Biol Blood Marrow Transplant. 2007;13:245–254. doi:10.1016/j.bbmt.2006.11.013.
  • Baker JN, Windham JA, Hinds PS, et al. Bereaved parents’ intentions and suggestions about research autopsies in children with lethal brain tumors. J Pediatr. 2013;163:581–586. doi:10.1016/j.jpeds.2013.01.015.
  • Johnson LM, Leek AC, Drotar D, et al. Practical communication guidance to improve phase 1 informed consent conversations and decision-making in pediatric oncology. Cancer. 2015;121:2439–2448. doi:10.1002/cncr.29354.
  • Gordon EJ, Daugherty CK. ‘Hitting you over the head’: oncologists’ disclosure of prognosis to advanced cancer patients. Bioethics. 2003;17:142–168.
  • Rosenberg AR, Orellana L, Kang TI, et al. Differences in parent-provider concordance regarding prognosis and goals of care among children with advanced cancer. J Clin Oncol. 2014;32:3005–3011. doi:10.1200/JCO.2014.55.4659.
  • Hill DL, Miller V, Walter JK, et al. Regoaling: a conceptual model of how parents of children with serious illness change medical care goals. BMC Palliat Care. 2014;13:9. doi:10.1186/1472-684X-13-9.
  • Mack JW, Joffe S, Hilden JM, et al. Parents’ views of cancer-directed therapy for children with no realistic chance for cure. J Clin Oncol. 2008;26:4759–4764. doi:10.1200/JCO.2007.15.6059.
  • Feudtner C, Morrison W. The darkening veil of “do everything”. Arch Pediatr Adolesc Med. 2012;166:694–695. doi:10.1001/archpediatrics.2012.175.
  • Bluebond-Langner M, Belasco JB, DeMesquita WM. “I want to live, until I don’t want to live anymore”: involving children with life-threatening and life-shortening illnesses in decision making about care and treatment. Nurs Clin North Am. 2010;45:329–343. doi:10.1016/j.cnur.2010.03.004.
  • Carter BS, Wocial LD. Ethics and palliative care: which consultant and when? Am J Hosp Palliat Care. 2012;29:146–150. doi:10.1177/1049909111410560.
  • Kuczewski MG. Whose will is it, anyway? A discussion of advance directives, personal identity, and consensus in medical ethics. Bioethics. 1994;8:27–48.
  • Wicclair MR. Patient decision-making capacity and risk. Bioethics. 1991;5:91–104.
  • Hinds PS, Oakes LL, Hicks J, et al. “Trying to be a good parent” as defined by interviews with parents who made phase I, terminal care, and resuscitation decisions for their children. J Clin Oncol. 2009;27:5979–5985. doi:10.1200/JCO.2008.20.0204.
  • Mack JW, Wolfe J, Cook EF, et al. Parents’ roles in decision making for children with cancer in the first year of cancer treatment. J Clin Oncol. 2011;29:2085–2090. doi:10.1200/JCO.2010.32.0507.
  • Bosslet GT, Pope TM, Rubenfeld GD, et al. An Official ATS/AACN/ACCP/ESICM/SCCM policy statement: responding to requests for potentially inappropriate treatments in intensive care units. Am J Respir Crit Care Med. 2015;191:1318–1330. doi:10.1164/rccm.201505-0924ST.
  • Solomon MZ, Sellers DE, Heller KS, et al. New and lingering controversies in pediatric end-of-life care. Pediatrics. 2005;116:872–883. doi:10.1542/peds.2004-0905.
  • American Academy of Pediatrics Committee on Bioethics. Guidelines on foregoing life-sustaining medical treatment. Pediatrics. 1994;93:532–536.
  • Diekema DS, Botkin JR. Clinical report–Forgoing medically provided nutrition and hydration in children. Pediatrics. 2009;124:813–822. doi:10.1542/peds.2009-1299.
  • Boss R, Nelson J, Weissman D, et al. Integrating palliative care into the PICU: a report from the improving palliative care in the ICU advisory board. Pediatr Crit Care Med. 2014;15:762–767. doi:10.1097/PCC.0000000000000209.
  • Meyer EC, Ritholz MD, Burns JP, et al. Improving the quality of end-of-life care in the pediatric intensive care unit: parents’ priorities and recommendations. Pediatrics. 2006;117:649–657. doi:10.1542/peds.2005-0144.
  • Truog RD, Meyer EC, Burns JP. Toward interventions to improve end-of-life care in the pediatric intensive care unit. Crit Care Med. 2006;34:S373–S379. doi:10.1097/01.CCM.0000237043.70264.87.
  • Wolfe J, Grier HE, Klar N, et al. Symptoms and suffering at the end of life in children with cancer. N Engl J Med. 2000;342:326–333. doi:10.1056/NEJM200002033420506.
  • Wolfe J. Suffering in children at the end of life: recognizing an ethical duty to palliate. J Clin Ethics. 2000;11:157–163.
  • Wolfe J, Hammel JF, Edwards KE, et al. Easing of suffering in children with cancer at the end of life: is care changing? J Clin Oncol. 2008;26:1717–1723.
  • Levine D, Lam CG, Cunningham MJ, et al. Best practices for pediatric palliative cancer care: a primer for clinical providers. J Support Oncol. 2013;11:114–125.
  • Vern-Gross TZ, Lam CG, Graff Z, et al. Patterns of end-of-life care in children with advanced solid tumor malignancies enrolled on a palliative care service. J Pain Symptom Manage. 2015;50:305–312. doi:10.1016/j.jpainsymman.2015.03.008.
  • Haanpaa M, Attal N, Backonja M, et al. NeuPSIG guidelines on neuropathic pain assessment. Pain. 2011;152:14–27. doi:10.1016/j.pain.2010.07.031.
  • Kaasa S. Is cancer pain control improved by a simple WHO pain analgesic ladder approach combined with tumor-directed treatment? J Clin Oncol. 2016;34:399–400. doi:10.1200/JCO.2015.64.7537.
  • Zernikow B, Smale H, Michel E, et al. Paediatric cancer pain management using the WHO analgesic ladder–results of a prospective analysis from 2265 treatment days during a quality improvement study. Eur J Pain. 2006;10:587–595. doi:10.1016/j.ejpain.2005.09.002.
  • WHO guidelines on the pharmacological treatment of persisting pain in children with medical illnesses, 2012. Geneva: World Health Organization; [ cited 2016 Apr 28]. Available from: http://www-ncbi-nlm-nih-gov.ezproxy.uthsc.edu/books/NBK138341/
  • Ben-Aharon I, Gafter-Gvili A, Leibovici L, et al. Interventions for alleviating cancer-related dyspnea: a systematic review and meta-analysis. Acta Oncol. 2012;51:996–1008. doi:10.3109/0284186X.2012.709638.
  • Ullrich CK, Mayer OH. Assessment and management of fatigue and dyspnea in pediatric palliative care. Pediatr Clin North Am. 2007;54:735–756, xi. doi:10.1016/j.pcl.2007.07.006.
  • Santucci G, Mack JW. Common gastrointestinal symptoms in pediatric palliative care: nausea, vomiting, constipation, anorexia, cachexia. Pediatr Clin North Am. 2007;54:673–689, x. doi:10.1016/j.pcl.2007.06.001.
  • Bakhshi S, Batra A, Biswas B, et al. Aprepitant as an add-on therapy in children receiving highly emetogenic chemotherapy: a randomized, double-blind, placebo-controlled trial. Support Care Cancer. 2015;23:3229–3237. doi:10.1007/s00520-015-2714-9.
  • Tuca A, Guell E, Martinez-Losada E, et al. Malignant bowel obstruction in advanced cancer patients: epidemiology, management, and factors influencing spontaneous resolution. Cancer Manag Res. 2012;4:159–169. doi:10.2147/CMAR.S29297.
  • Kyle G. Constipation: symptoms, assessment and treatment. Br J Nurs. 2011;20:1432. doi:10.12968/bjon.2011.20.22.1432.
  • Flerlage JE, Baker JN. Methylnaltrexone for opioid-induced constipation in children and adolescents and young adults with progressive incurable cancer at the end of life. J Palliat Med. 2015;18:631–633. doi:10.1089/jpm.2014.0364.
  • Kyle G. Methylnaltrexone: a subcutaneous treatment for opioid-induced constipation in palliative care patients. Int J Palliat Nurs. 2009;15:533–540. doi:10.12968/ijpn.2009.15.11.45492.
  • Prichard D, Bharucha A. Management of opioid-induced constipation for people in palliative care. Int J Palliat Nurs. 2015;21:272, 274–280. doi:10.12968/ijpn.2015.21.2.87.
  • Couluris M, Mayer JL, Freyer DR, et al. The effect of cyproheptadine hydrochloride (periactin) and megestrol acetate (megace) on weight in children with cancer/treatment-related cachexia. J Pediatr Hematol Oncol. 2008;30:791–797. doi:10.1097/MPH.0b013e3181864a5e.
  • Goldman A, Hewitt M, Collins GS, et al. Symptoms in children/young people with progressive malignant disease: United Kingdom children’s cancer study group/Paediatric oncology nurses forum survey. Pediatrics. 2006;117:e1179–e1186. doi:10.1542/peds.2005-0683.
  • Ullrich CK, Dussel V, Hilden JM, et al. Fatigue in children with cancer at the end of life. J Pain Symptom Manage. 2010;40:483–494. doi:10.1016/j.jpainsymman.2010.02.020.
  • Wusthoff CJ, Shellhaas RA, Licht DJ. Management of common neurologic symptoms in pediatric palliative care: seizures, agitation, and spasticity. Pediatr Clin North Am. 2007;54:709–733, xi. doi:10.1016/j.pcl.2007.06.004.
  • Dreifuss FE, Rosman NP, Cloyd JC, et al. A comparison of rectal diazepam gel and placebo for acute repetitive seizures. N Engl J Med. 1998;338:1869–1875. doi:10.1056/NEJM199806253382602.
  • Kearney JA, Salley CG, Muriel AC. Standards of psychosocial care for parents of children with cancer. Pediatr Blood Cancer. 2015;62(Suppl 5):S632–S683. doi:10.1002/pbc.25761.
  • Kersun LS, Elia J. Depressive symptoms and SSRI use in pediatric oncology patients. Pediatr Blood Cancer. 2007;49:881–887. doi:10.1002/pbc.21208.
  • Kersun LS, Rourke MT, Mickley M, et al. Screening for depression and anxiety in adolescent cancer patients. J Pediatr Hematol Oncol. 2009;31:835–839. doi:10.1097/MPH.0b013e3181b8704c.
  • AAHPM palliative sedation position statement. 2014 [cited 2016 Apr 28]. Available from: http://www.aahpm.org/positions/palliative-sedation
  • Morrison W, Kang T. Judging the quality of mercy: drawing a line between palliation and euthanasia. Pediatrics. 2014;33(Supp 1):S31–36.
  • Anghelescu D, Hamilton H, Faughnan L, et al. Pediatric palliative sedation therapy with propofol: recommendations based on experience in children with terminal cancer. J Palliat Med. 2012;15:1082–1090.
  • Robinson MR, Thiel MM, Backus MM, et al. Matters of spirituality at the end of life in the pediatric intensive care unit. Pediatrics. 2006;118:e719–e729. doi:10.1542/peds.2005-2298.
  • Priority Areas for National Action. Transforming health care quality. Adams K, Corrigan JM, editors. Washington (DC): The National Academies Press; 2001. p. 41–93.
  • When children die: improving palliative and end-of-life care for children and their families. Field MJ, Behrman RE, editors. Washington (DC): National Academies Press; 2002.
  • Wiener L, McConnell DG, Latella L, et al. Cultural and religious considerations in pediatric palliative care. Palliat Support Care. 2013;11:47–67. doi:10.1017/S1478951511001027.
  • Foster TL, Gilmer MJ, Davies B, et al. Bereaved parents’ and siblings’ reports of legacies created by children with cancer. J Pediatr Oncol Nurs. 2009;26:369–376. doi:10.1177/1043454209340322.
  • Foster TL, Gilmer MJ, Davies B, et al. Comparison of continuing bonds reported by parents and siblings after a child’s death from cancer. Death Stud. 2011;35:420–440. doi:10.1080/07481187.2011.553308.
  • Foster TL, Dietrich MS, Friedman DL, et al. National survey of children’s hospitals on legacy-making activities. J Palliat Med. 2012;15:573–578. doi:10.1089/jpm.2011.0447.
  • Akard TF, Dietrich MS, Friedman DL, et al. Digital storytelling: an innovative legacy-making intervention for children with cancer. Pediatr Blood Cancer. 2015;62:658–665. doi:10.1002/pbc.25337.
  • Rosenberg AR, Baker KS, Syrjala K, et al. Systematic review of psychosocial morbidities among bereaved parents of children with cancer. Pediatr Blood Cancer. 2012;58:503–512. doi:10.1002/pbc.23386.
  • Harper M, O’Connor RC, O’Carroll RE. Increased mortality in parents bereaved in the first year of their child’s life. BMJ Support Palliat Care. 2011;1:306–309. doi:10.1136/bmjspcare-2011-000025.
  • Lichtenthal WG, Sweeney CR, Roberts KE, et al. Bereavement follow-up after the death of a child as a standard of care in pediatric oncology. Pediatr Blood Cancer. 2015;62(Suppl 5):S834–S869. doi:10.1002/pbc.25700.

Reprints and Corporate Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

To request a reprint or corporate permissions for this article, please click on the relevant link below:

Academic Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

Obtain permissions instantly via Rightslink by clicking on the button below:

If you are unable to obtain permissions via Rightslink, please complete and submit this Permissions form. For more information, please visit our Permissions help page.