Most Proposed Topic :
HA Young Investigators Session (projects to be presented by and HA staff who had joined HA for less than 15 years)
Proposed Topic (Second preferred): :
Clinical Safety and Quality Service III (Projects aiming at quality service to patients and their carers)
Authors: (including presenting author): :
Chan KP(1), Li CH(2), Yeung KY(2), Lee T(2), Chung WK(1), Hsu DY(1), Chan OM(1), Chui R(1), Cheung KW(3), Wong PL(3), Wu MP(3), Chan CH(3), Cheng HWB(1)
Affiliation: :
(1) Medical Palliative Medicine Team, Department of Medicine & Geriatrics, TMH
(2) Department of Pediatrics & Adolescent Medicine, TMH
(3) Palliative Home Care Nursing Team, NSD, NTWC
Introduction: :
Due to advances in medical care, a growing number of young people with life-limiting neurodevelopmental disabilities (LLNDDs) are now surviving into adulthood. However, traditional model of care between pediatrics and adult medicine was fragmented and did not match their multi-facet needs.
Objectives: :
A special working group that includes pediatricians, adult palliative care team and representatives from non-governmental organizations (NGOs) was formed, providing a period of joint care of 12-24 months before transition to adult palliative care team.
Methodology: :
A retrospective case series of 19 young adults with LLNDDs, recorded during the July 2015 to June 2020 period at study institution is presented.
Result & Outcome: :
Recruited patients’ age ranged from 18 to 38 (mean 26.2 [SD 6.1]). Majority of them (n=14) require residential care at long term care facilities (LTCFs) and require high level of nursing care, which include artificial nutrition (n=8) and home ventilator (n=5). All patients referred to our palliative care (PC) program were engaged in a structured advance care planning (ACP) process. Seventeen patients (89.5%) had their Do-Not-Resuscitate (DNR) directives in place and two mentally competent patients completed their own advance directive (AD). All deceased (n=10) had their DNR directives being honored. In conclusion, palliative care needs of young adults suffering from LLNDDs should be properly addressed and implementation of a joint transitional care model between pediatrics and adult PC team is one possible method. Future research should encompass better care model that addresses the multi-facet needs of young people suffering from LLNDDs, especially the transition from pediatrics to adult medicine.
