It has long been recognized that patients with neurological conditions, and particularly pediatric neurology patients, are well suited for palliative care because they frequently have a high symptom burden and variable prognoses. In 1996, the American Academy of neurology formally recognized a need for neurologists to “understand and apply the principles of palliative medicine.” Subsequently, some reviews have proposed a simultaneous care model in which palliative care is integrated for all neurology patients from the time of diagnosis. This article will review the current status of palliative care in pediatric neurology and discuss barriers to its integration.
WHO (Eds). National Cancer Control Programmes: Policies and Managerial Guidelines. geneva: World Health Organization; 2002.
2.
Palliative care in neurology. The American academy of neurology ethics and humanities subcommittee. Neurology. 1996;46(3):870–872.
3.
OliverDJBorasioGDCaraceniA. A consensus review on the development of palliative care for patients with chronic and progressive neurological disease. Eur J Neurol. 2016;23(1):30–38.
4.
BoersmaIMiyasakiJKutnerJKlugerB. Palliative care and neurology: time for a paradigm shift. Neurology. 2014;83(6):561–567.
5.
RobinsonMTHollowayRG. Palliative care in neurology. Mayo Clin Proc. 2017;92(10):1592–1601.
6.
ProvincialiLCarliniGTarquiniDDefantiCAVeroneseSPucciE. Need for palliative care for neurological diseases. Neurol Sci. 2016;37(10):1581–1587.
7.
SreenivasanVNoblezaCOS. Challenges and ethical issues in the course of palliative care management for people living with advanced neurologic diseases. Ann Palliat Med. 2018;7(3):304–319. doi: 10.21037/apm.2017.09.09.
8.
SinghTPetersSRTirschwellDLCreutzfeldtCJ. Palliative care for hospitalized patients with stroke. Results from the 2010 to 2012 national inpatient sample. Stroke. 2017;48(9):2534–2540.
9.
HauerJMWolfeJ. Supportive and palliative care of children with metabolic and neurological diseases. Curr Opin Support Palliat Care. 2014;8(3):296–302.
10.
FeudtnerCKangTIHexemKR. Pediatric palliative care patients: a prospective multicenter cohort study. Pediatrics. 2011;127(6):1094–1101.
11.
DallaraAMeretASaroyanJ. Mapping the literature: palliative care within adult and child neurology. J Child Neurol. 2014;29(12):1728–1738.
12.
FeudtnerCWomerJAugustinR, et al. Pediatric palliative care programs in children’s hospitals: a cross-sectional national survey. Pediatrics. 2013;132(6):1063–1070.
13.
Pediatric Palliative Care and Hospice Care Commitments, Guidelines and Recommendations. Pediatrics. 2013;132(5):966–972.
14.
QuillTEAbernethyAP. Generalist plus specialist palliative care—creating a more sustainable model. N Engl J Med. 2013;368(13):1173–1175.
15.
DefantiCA. Study group of bioethics and palliative care in neurology: program document. Neurol Sci. 2000;21(5):261–271.
16.
KniesAKHwangDY. Palliative care practice in neurocritical care. Semin Neurol. 2016;36(6):631–641.
17.
FronteraJACurtisJRNelsonJE. Integrating palliative care into the care of neurocritically ill patients: a report from The IPAL-ICU (improving palliative care in the intensive care unit) project advisory board and the center to advance palliative care. Crit Care Med. 2015;43(9):1964–1977.
18.
LemmonMEBidegainMBossRD. Palliative care in neonatal neurology: robust support for infants, families, and clinicians. J Perinatol. 2015;36(5):331–337.
19.
YoungeNSmithPBGoldbergRN. Impact of a palliative care program on end-of-life care in a neonatal intensive care unit. J Perinatol. 2015;35(3):218–222.
20.
de VisserMOliverDJ. Palliative care in neuromuscular diseases. Curr Opin Neurol. 2017;30(6):686–691.
21.
HoCStraatmanL. A review of pediatric palliative care service utilization in children with a progressive neuromuscular disease who died on a palliative care program. J Child Neurol. 2013;28(1):40–44.
22.
GrahamRJRobinsonWM. Integrating palliative care into chronic care for children with severe neurodevelopmental disabilities. J Dev Behav Pediatr. 2005;26(5):361–365.
23.
LövgrenMSejersenTKreicbergsU. Parents’ experiences and wishes at end of life in children with spinal muscular atrophy types I and II. J Pediatr. 2016;175:201–205.
24.
ZimmermannKBergstraesserEEngbergS. When parents face the death of their child: a nationwide cross-sectional survey of parental perspectives on their child’s end-of life care. BMC Palliat Care. 2016;15:30.
25.
Zaal-SchullerIHWillemsDLEwalsFVPMvan GoudoeverJBde VosMA. How parents and physicians experience end-of-life decision-making for children with profound intellectual and multiple disabilities. Res Dev Disabil. 2016;59:283–293.
26.
DurallAZurakowskiDWolfeJ. Barriers to conducting advance care discussions for children with life-threatening conditions. Pediatrics. 2012;129(4):e975–e982.
27.
DaviesH. Living with dying: families coping with a child who has a neurodegenerative genetic disorder. Axone. 1996;18(2):38–44.
28.
BorasioGD. The role of palliative care in patients with neurological diseases. Nat Rev Neurol. 2013;9(5):292–295.
29.
The LancetN. Integrating palliative care into neurological practice. Lancet Neurol. 2017;16(7):489.
30.
ChangRSPoonWS. “Triggers” for referral to neurology palliative care service. Ann Palliat Med. 2018;7(3):289–295. doi: 10.21037/apm.2017.08.02.
31.
HussainJAdamsDAllgarVCampbellC. Triggers in advanced neurological conditions: prediction and management of the terminal phase. BMJ Support Palliat Care. 2014;4(1):30–37.
32.
SteeleRG. Trajectory of certain death at an unknown time: children with neurodegenerative life-threatening illnesses. Can J Nurs Res. 2000;32(3):49–67.
33.
HepgulNGaoWEvansCJ. Integrating palliative care into neurology services: what do the professionals say?BMJ Support Palliat Care. 2018;8(1):41–44.
34.
van VlietLMGaoWDiFrancescoD. How integrated are neurology and palliative care services? Results of a multicenter mapping exercise. BMC Neurol. 2016;16:63.
35.
VanopdenboschLJMaesEOliverDJ. European Academy of Neurology/European Association for Palliative Care Taskforce on Neurology Consensus recommendations on palliative care for patients with chronic and progressive neurological disease—acceptability for Belgian neurologists. Eur J Neurol. 2017;24(7):995–998.
36.
DieplingerAKundtFSLorenzlS. Palliative care nursing for patients with neurological diseases: what makes the difference?Br J Nurs. 2017;26(6):356–359.
