Published on September 16, 2014
Pallia%ve Care in the Intensive Care Se1ng Paediatric Neurology Update 2014 HUKM 28th August 2014 Chong Lee Ai Hospis Malaysia email@example.com
PalliaCve care “…prevent and alleviate suffering…” “…enhance quality of life…” “…provide comfort…” “…child and family…” “…in conjuncCon with other therapies that are intended to prolong life…”
Neuromuscular disease • Progressive • Limited life span • Use of technological advances to prolong survival • NIPPV : relieves dyspnoea, provide comfort Brinkrant D et al. Journal of PalliaCve Care 2008;24(4):265-‐287
Life may be prolonged with non-‐invasive venClaCon • But burdened by progressive burden of disease • PotenCal for impaired quality of life Brinkrant D et al. Journal of PalliaCve Care 2008;24(4):265-‐287
• PaCents with DMD may sCll die from causes untreatable from venClaCon • cardiomyopathy • Pneumonia/mucous plugging • Dysphagia/malnutriCon • Contractures/Scoliosis • DM • DVT
• May Neuromuscular disease be primarily neurological • cardioresp complicaCons -‐> fatal • MulCple teams: respiratory, cardiologist, intensivist • PalliaCve care integrated in respiratory & cardiac care (ACP and CPR) • Empowerment of ‘‘palliaCve generalists’’ Jones E and Wolfe J. J Pal Med:17(5): editors note • Goals of care: • Prevent and relief suffering • Support for best quality of life for paCents and families
• How can palliaCve care be integrated in PICU in paCents with neurological condiCons? • Why are paCents in PICU?
PaCent AM • 7 yo girl with cerebral palsy (kernicterus) • chronic dystonia • kyphoscoliosis / restricCve lung disease • Admiied thru neuro clinic to PICU with pain from dystonia à IVI Midazolam • Meds: diazepam, clonidine, artane (trihexyphenidyl HCl) • What else? • PaCent was in a lot of pain, not sleeping • Mother not sleeping, anxious, 4 children • Oral Morphine added for pain (Mom has opioid phobia)
• How to support… • PaCent: Symptom control • Mother: Respite for mother Educate regarding opioid phobia 61% paediatric nurses thought morphine used in palliaCve care was addicCve. Chong LA, Khalid F. Progress in Pall Care 2014;22(4):195-‐200
PaCent DM • 16yo boy with Duchenne’s Muscular Disease • On BiPAP on night • Severe kyphoscoliosis • SOB, pneumonia: admiied PICU for respiratory support • BiPAP 24 hours, chest physio • IV anCbioCcs • Social: only child, father physically abuses mom • Goes to school, reclining wheelchair – back pain
• Acute infecCon • OT to make modificaCons • Social worker review • Teacher
“My son Nicholas”……www.ehospice.com • Complex health needs throughout his life, at home unCl he was 19.5yo • For 4 months Nicholas was cared for in an intensive care unit. • Nicholas had spent liile Cme in hospital up to this point, despite his poor condiCon, the consultant said he would ‘give him a chance’. • But this led to him being resuscitated Cme and Cme again, moving from intensive care to high dependency, and back to intensive care. • They needed the bed space,nothing more they could do. • They sent him to the ward to die, but nobody told us. • Nicholas was severely limited. He couldn’t see, walk or talk and was totally confused about what was going on, surrounded by a ward full of older men. • The Sister confessed she had no experience of caring for a complex needs paCent. • Nicholas was transferred out of hospital and he spent his last days in a local hospice. We wanted to bring him home, but with all the equipment and oxygen he required, it just wasn’t possible. • And that is our 'end of life story’
End of life care • What is the experience of parents and paCents?
Challenges for carers in PICU • MulCple professional caregivers • Access to appropriate informaCon • CommunicaCon: Treatment discussions by mulCdisciplinary teams didn’t included family, too technical for family’s understanding • Emergent changes not communicated • Procedures stressful – explanaCon , offer to wait outside • Access to child: rooming-‐in arrangements • Parental stress significantly reduced , emoConal security to child Smith AB et al.Pediatric Nursing 2007:33(3):215-‐221
TransiCon of care • PICU: • highly technological and procedure-‐focused environment • intensive intervenCons, aggressive care • to cure illness or prolong life • Death in not preventable • Staff: transiCon -‐ address end-‐of-‐life issues • PrioriCze physical & emoConal comfort of the child • Balancing conCnued treatment intended to prolong life • Assessment of the child and family’s beliefs, values • Understanding of the medical implicaCons of the illness or condiCon Doorenbos A et al. Journal of Social Work in End-‐of-‐Life & PalliaCve Care 2011, 8:297–315
Guidelines for withholding and withdrawing life support • RCPCH 1st ed 1997, 2nd ed 2004 • Malaysian guidelines 2005 • UK PICU (10yrs study): • Withdrawal 55% (Malaysia 5%, Goh 1999) • limiCng treatment 10% • Brain dead 25% • Median Cme from admission to death 2 days, MWLST 3days, LT 4.5 days • à clinicians quesConing appropriateness of intervenCon early Sands R et al. Nursing in CriCcal Care 2009;14(5):235-‐240
Dying in PICU, what maiers most… “I was sCll able to be her mom” • providing love, comfort and care: • to be good parent • creaCng security and privacy : • to cry if wanted to, private uninterrupted moments, unlimited access to child, allow parents to eat and sleep but close to child • exercising responsibility: • having knowledge about condiCon, advocaCng for best possible care, noCcing and monitoring care McGraw SA et al. Pediatr Crit Care Med 2012;13(6):e350-‐6
Bereavement • Care given to families around death influences how families cope with the loss • Parents who perceived they were included in discussions -‐ > trusted their doctors opinion on limit/withdrawal • Parental presence at the Cme of a child’s death • Provision of adequate informaCon • SympatheCc environment Meert KL et al.Pediatr Crit Care Med.2000;1(2): 179-‐185 • Impacted by • CommunicaCon with healthcare professional, • feeling a sense of care from healthcare professional Michelson KN et al. Pediatr Crit Care Med 2013;14(1): e34-‐44
• end-‐of-‐life care is emerging as a comprehensive area of experCse in the ICU • demands the same high level of knowledge and competence as all other areas of ICU pracCce Truog RD etal. Crit Care Med 2008;36:953–963
• ‘PalliaCve generalist’ • Integrate palliaCve care into PICU
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