Palliative Care For Children With A Yet Undiagnosed Syndrome


Palliative Care For Children With A Yet Undiagnosed Syndrome


Hoell J I; Warfsmann J; Gagnon G; Trocan L; Balzer S; Oommen P T; Borkhardt A; Jansen G; Kuhlen M




European Journal Of Pediatrics




Children; End-of-life Care; Palliative Care; Undiagnosed Syndrome


The number of children without a diagnosis in pediatric palliative home care and the process of decision-making in these children are widely unknown. The study was conducted as single-center retrospective cohort study. Between January 2013 and September 2016, 198 children and young adults were cared for; 27 (13.6%) of these were without a clear diagnosis at the start of pediatric palliative home care. A definite diagnosis was ultimately achieved in three children. Median age was 7 years (0-25), duration of care 569 days (2-2638), and number of home visits 7.5 (2-46). Most patients are still alive (19; 70.4%). Median number of drugs administered was eight (range 2-19); antiepileptics were given most frequently. Despite the lack of a clear diagnosis (and thus prognosis), 13 (48.1%) parents faced with their critically ill and clinically deteriorating children decided in favor of a DNAR order. Comparing this with 15 brain-injured children, signs, symptoms, and supportive needs were similar in both groups. CONCLUSION: Children without a clear diagnosis are relatively common in pediatric palliative care and have-like all other patients-the right to receive optimized and symptom-adapted palliative care. Parents are less likely to choose treatment limitation for children who lack a definitive diagnosis. What is Known: * A clear diagnosis is usually considered important for best-practice pediatric palliative care (PPC) including advanced care planning (ACP). * Timely initiation of pediatric palliative care (PPC) is highly recommended in children with life-limiting conditions. What is New: * SWAN (syndrome without a name) children show similar signs and symptoms (mostly neurological) and have similar supportive needs as brain-injured children. * Defining treatment limitations in advance care planning is more difficult for parents of SWAN compared to brain-injured children.


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Citation List Month

October 2017 List


Hoell, Jessica I
Warfsmann, Jens
Gagnon, Gabriele
Trocan, Laura
Balzer, Stefan
Oommen, Prasad T
Borkhardt, Arndt
Janssen, Gisela
Kuhlen, Michaela
Journal Article
Eur J Pediatr. 2017 Aug 14. doi: 10.1007/s00431-017-2991-z.


Continental Europe; Europe. NLM UID: 7603873.
PMID: 28808789.


Hoell J I; Warfsmann J; Gagnon G; Trocan L; Balzer S; Oommen P T; Borkhardt A; Jansen G; Kuhlen M, “Palliative Care For Children With A Yet Undiagnosed Syndrome,” Pediatric Palliative Care Library, accessed January 26, 2022,

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