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 firstname.lastname@example.org
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
Calcification Inhibitors in CKD and Dialysis Patients
Palliative care: Issues in the ... improvement in palliative care provision in the ICU setting ... palliative care in the intensive ...
Promoting Palliative Care Excellence in Intensive Care ... change in critical care settings that fused palliative care into existing ...
National Hospice and Palliative Care ... in critical care settings, palliative providers and hospital ... care in the intensive care ...
... in the palliative care service ... palliative care in critical care settings has ... care of intensive care patients by ...
Palliative care in the intensive care ... Most patients who receive terminal care in the intensive care setting die after withdrawing or limiting of ...
The purpose of this article was to review the current state of palliative care programs and delivery
Physicians sometimes use the term palliative care in a sense meaning palliative therapies without ... particularly in the intensive care unit setting, ...
... Palliative Care in Critical Care Settings. ... Palliative Medicine is excited to announce a new call for ... (Professor of Intensive Care ...
... death in the intensive care unit ... measurement and performance feedback in evaluating the quality of palliative care in ICU settings. 47 ...