TY  - CHAP
M1  - Book, Section
TI  - Pediatric Palliative Care
A1  - Johnston, Brooke
A1  - Powers-Fabian, Denise
A1  - Carst, Nancy
A1  - Friebert, Sarah
A2  - Usatine, Richard P.
A2  - Sabella, Camille
A2  - Smith, Mindy Ann
A2  - Mayeaux, E.J.
A2  - Chumley, Heidi S.
A2  - Appachi, Elumalai
PY  - 2015
T2  - The Color Atlas of Pediatrics
AB  - At  7  months  of  age,  Blake  (Figure  5-1)  was  diagnosed  with  a  rare,  progressive  malignancy.  His  initial  admission  was  prompted  by  swelling  of  his  left  lower  extremity,  and  imaging  studies  revealed  an  extra-renal  rhabdoid  tumor.  His  family  experienced  a  rapid  indoctrination  into  the  world  of  childhood  cancer.  Blake  had  a  central  line  placed  and  chemotherapy  begun;  his  parents  faced  the  accompanying  challenges  of  work  absence,  needs  of  their  other  child,  the  responsibilities  of  communicating  complicated  information  to  supportive  communities,  and  the  fear  of  losing  their  infant  son.  Six  weeks  later,  Blake  was  admitted  for  emesis  and  the  detection  of  brain  metastases  lent  new  gravity  to  his  prognosis.  A  ventriculoperitoneal  shunt  was  placed  and  bone  marrow  studies  performed.  The  Palliative  Care  service  met  Blake,  his  parents,  and  4  year-old  sister  shortly  thereafter.  Blake’s  family  sought  support  in  managing  anticipatory  grief,  supporting  and  preparing  his  sister,  decision-making  discussions,  end-of-life  planning,  as  well  as  in  planning  for  life  after  his  death.  The  Palliative  Care  service  also  provided  symptom  control  consultation  for  Blake’s  disease-  related  pain  and  agitation.  Music  and  art  therapies  were  helpful  for  diversion  and  expression  of  difficult  emotions,  particularly  for  Blake’s  sister.  Blake  received  palliative  chemotherapy  which  was  temporarily  quite  efficacious  and  resulted  in  marked  clinical  improvement.  He  would  play,  smile,  engage  those  around  him,  and  grant  his  family  an  unexpected  gift  of  treasured  time.  Between  admissions  for  chemotherapy,  his  family  was  supported  by  local  hospice,  as  well  as  the  on-call  oncology  and  palliative  care  staff.  Upon  admission  for  a  fourth  round  of  high-dose  chemotherapy  it  became  evident  that  the  hydration  therapy  necessary  for  chemotherapy  administration  would  worsen  Blake’s  already  tenuous  respiratory  status.  His  parents,  who  had  clearly  expressed  that  they  desired  only  therapies  that  would  be  beneficial  for  Blake,  wished  to  discontinue  chemotherapy.  Supportive  measures,  including  opioid  treatment  for  pain  and  dyspnea,  and  benzodiazepine  infusion  for  anxiety  and  dyspnea,  were  titrated  to  address  clinical  symptoms.  Team  members  supported  the  family  through  this  decision-making  process,  and  offered  discussions  regarding  common  occurrences  at  the  end  of  life.  His  parents  elected  to  have  Blake’s  end  of  life  in  the  hospital  setting  as  they  felt  most  comfortable  with  the  resources  there.  He  died  peacefully  in  the  company  of  his  family.  The  Palliative  Care  team  continues  to  provide  bereavement  support.  
SN  - 
PB  - McGraw-Hill Education
CY  - New York, NY
Y2  - 2024/04/19
UR  - accesspediatrics.mhmedical.com/content.aspx?aid=1114868881
ER  -