Palliative care in intensive care setting
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Pallia%ve Care in the Intensive Care Se1ng
Paediatric Neurology Update 2014 HUKM
28th August 2014
Chong Lee Ai Hospis Malaysia
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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…”
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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
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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
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• PaCents with DMD may sCll die from causes untreatable from
venClaCon
• cardiomyopathy
• Pneumonia/mucous plugging
• Dysphagia/malnutriCon
• Contractures/Scoliosis
• DM
• DVT
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• May 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
Neuromuscular disease
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• How can palliaCve care be integrated in PICU in paCents with neurological condiCons?
• Why are paCents in PICU?
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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)
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• 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
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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
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• Acute infecCon
• OT to make modificaCons • Social worker review • Teacher
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“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’
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End of life care
• What is the experience of parents and paCents?
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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
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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
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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
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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
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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
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• 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
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• ‘PalliaCve generalist’
• Integrate palliaCve care into PICU