Pallia%ve  Care  in  the  Intensive  Care  Se1ng  

Paediatric  Neurology  Update  2014  HUKM  

28th  August  2014    

Chong  Lee  Ai  Hospis  Malaysia  

leeai@hospismalaysia.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  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  

•  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