End of Life Issues in Pediatric Patients.

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by  Haque, Malika

EEnndd--ooff--LLiiffee IIssssuueess iinn PPeeddiiaattrriicc PPaattiieennttss empathy and compassion. The team should have
many “care conferences” with the family, wherein
Article DOI: http://dx.doi.org/10.5915/43-8973
Video DOI: http://dx.doi.org/10.5915/43-8973V all the facts about the patient’s serious illness and
critical health are explained in detail to the family.
Malika Haque, MD, FAAP These conferences should occur at each stage of the
child’s illness to better prepare the family for what
Clinical Professor of Pediatrics may be a difficult outcome.
College of Medicine, The Ohio State University It is vital that the ethnicity and religious prefer-
Pediatrician, Nationwide Children’s Hospital ence of the pediatric patient be identified. If there is
Pediatric Consultant a language barrier between the health-care
Bureau of Disability and Social Security providers and the patient's family, an interpreter’s
Medical Director help should be sought to ensure proper care man-
Noor Community Free Clinic agement.
Columbus, Ohio Informed consent for procedures such as a tra-
cheostomy and insertion of a gastrostomy tube must
AAbbssttrraacctt:: be obtained from the family or legal guardian and a
DDeeaalliinngg wwiitthh eenndd--ooff--lliiffee iissssuueess iinn ppeeddiiaattrriicc review of the possible complications related to these
ppaattiieennttss iiss ddiiffffiiccuulltt dduuee ttoo tthheeiirr yyoouunngg aaggee,, tthhee ccoomm-- procedures must be shared. Again, if there is a lan-
pplleexxiittiieess ooff ssiittuuaattiioonnss lleeaaddiinngg ttoo iillllnneessss,, aanndd tthhee mmuull-- guage barrier, the assistance of an interpreter should
ttiippllee ddeecciissiioonn mmaakkeerrss tthhaatt eexxiisstt iinn aaddddiittiioonn ttoo ppaarr-- be utilized to ensure that the family or legal
eennttss aanndd gguuaarrddiiaannss.. PPeeddiiaattrriicc ppaattiieennttss ddoo nnoott hhaavvee guardian is fully apprised of the situation.
lliivviinngg wwiillllss aaddddrreessssiinngg ssppeecciiffiicc iinnssttrruuccttiioonnss ffoorr hhooww Informed consent is also needed from a parent or
lloonngg ttoo ccoonnttiinnuuee lliiffee ssuuppppoorrtt ssyysstteemmss ssuucchh aass aa vveenn-- guardian for withdrawal of life-sustaining treatment
ttiillaattoorr oorr aa GG--ttuubbee ((ggaassttrroossttoommyy ttuubbee ffoorr ffeeeeddiinngg)).. such as hydration, nutrition, ventilator support, and
TThhee ddyyiinngg ppeeddiiaattrriicc ppaattiieenntt aallssoo hhaass ttyyppiiccaallllyy nnoott for “do not resuscitate” (DNR) orders.1 When the
ccoonnsseenntteedd ttoo oorrggaann ddoonnaattiioonn eeiitthheerr.. TThhee bbuurrddeenn ooff health-care provider recognizes the futility of a
ddeecciissiioonn mmaakkiinngg lliieess wwiitthh tthhee ppaarreennttss,, gguuaarrddiiaannss,, treatment -- for example continuing invasive meas-
aanndd hheeaalltthh--ccaarree pprroovviiddeerrss ooff tthhee ddyyiinngg cchhiilldd.. TThhiiss ures to save life in cases such as asphyxiating tho-
ppaappeerr ddeeaallss wwiitthh tthheessee ccoommpplleexxiittiieess aanndd rreefflleeccttss tthhee racic dystrophy, where there is a small thorax, and
aauutthhoorr’’ss oowwnn eexxppeerriieenncceess oovveerr nneeaarrllyy ffoouurr ddeeccaaddeess hypoplastic or poorly developed lungs -- the health-
ooff ddeeaalliinngg wwiitthh ppeeddiiaattrriicc ppaattiieennttss iinn hheerr pprraaccttiiccee.. care provider must inform the patient’s family or
legal guardian of the poor prognosis for life, even
KKeeyy wwoorrddss:: IInnffoorrmmeedd ccoonnsseenntt,, eenndd--ooff--lliiffee ccaarree,, ddoo with continued ventilator treatment or life-saving
nnoott rreessuusscciittaattee ((DDNNRR)),, bbrraaiinn ddeeaatthh,, ccaarrddiiaacc ddeeaatthh,, measures.1
oorrggaann ddoonnaattiioonn.. When dealing with cases such as trisomy 13, tri-
somy 18, and anencephaly, the health-care provider
When a terminally ill or critically ill pediatric must clearly explain the patient’s poor prognosis for
patient is admitted to a neonatal or pediatric inten- life and functioning to the family or legal guardian,
sive care unit (NICU or PICU), it is important that the and they must decide for themselves as to the future
primary care doctor continue to be the connecting management of their child.1 The health-care team
link between the patient, family, subspecialists, and must continue to be very supportive of the family or
other health-care providers. legal guardian’s decision, whatever it may be.
The health-care team, of course, should care for It is the author’s experience, when given all the
the child and family with an enormous amount of facts, the family members or the legal guardian are
usually able to make the right choice for further
management of their child. They, like the health-
Correspondence should be directed to
care provider, would like to make the child's final
journey as pain free and comfortable as possible and
Malika Haque, MD, FAAP
often choose not to prolong the child’s suffering by
[email protected]
jima.imana.org JIMA: Volume 43, 2011 - Page 192
keeping the child on a ventilator. Parents and family issues are involved with organ donation in relation
can also suffer immensely by seeing their child on a to brain death, i.e. when the cortical and brain stem
ventilator for prolonged periods of time.1 functions have clinically ceased. Dialogue regarding
Acceptance of a DNR order is easier when parents are this will continue to evolve in the future.5-7
given all the facts about their child's poor prognosis
for life or functioning, depending upon the severity CCoonncclluussiioonn
of the cases discussed above.1 Dealing with a dying pediatric patient and com-
In some cases when parents are perhaps respon- forting the grief-stricken family is a very difficult
sible for the child’s injury, such as in shaken baby task for physicians and health-care professionals. It
syndrome, which leads to brain hemorrhage, blind- requires a team of concerned physicians, primary
ness, and death in some cases; severe burns; or even care physicians, specialists, nurses, case managers,
drowning due to lack of supervision or abuse, the interpreters, social workers, legal services, and reli-
parent or guardian will not accept the DNR order or gious leaders to provide optimum care to the dying
have the child taken off the ventilator, even if the patient and his or her family.
child is already brain dead or has a poor chance to Great professional skills along with compassion,
live. Parents, family members, and legal guardians in empathy, counseling, and support are essential
such circumstances refuse to accept the futility of ingredients to the successful management of the
treatment as they are afraid of the consequences and end-of-life dilemmas of pediatric patients.
implications when the child is pronounced dead.2-4 Muslim families find comfort in the Holy Qur’an,
In such cases a great deal of time has to be spent which states:
with the pediatric patient’s parents, family mem-
bers, or legal guardian to explain the poor prognosis, It is He who gives life and death and when He
even if all the supportive treatment for life is contin- decides upon an affair, He says to it; be it and
ued. Such interactions will involve the entire health- it is.8
care team, legal services, and even religious leaders
and clerics such as a priest, chaplain, imam, or rabbi Another Qur’anic verse states:
to help the family understand the prognosis and
make the best choice or decision on behalf of the No soul can die except by God’s permission,
dying child.4 the term being fixed by writing.9
Religious leaders or clerics can offer comfort to
the parents of the dying child, assist the child in the When a child dies, parents and families of the
PICU or NICU, and perform last rights. When life-sus- departed child find comfort in each other, friends,
taining treatment is removed, the religious leader or and health-care providers. Yet, their religion may
cleric can recite prayers or the “shahada” in the ears provide the most comfort. They seek the ultimate
of a dying Muslim child. This is comforting to dis- strength from their faith in order to deal with the
traught parents and family members who are ago- child’s situation and move on. Muslims believe that
nizing over the death of their precious child. this life is temporary and there is a hereafter. In sit-
Organ donation is still a controversial topic for uations of a child’s death, it is this belief that is most
families of different faiths. In general, most families comforting to a Muslim family.
are not comfortable dealing with the topic of organ
donation at the time the child is dying. On rare occa- RReeffeerreenncceess
sions, a family may realize their dying child could 1. Haque M. Case presentation Ellis Van Creveld
give life and good health to another child and active- Syndrome and the dilemmas and implications of pre-
ly seek to allow for the child’s organ donation. natal diagnosis and management of a congenitally
Organ donation is still a rarity, although several malformed baby. J Islam Med Assoc. 1998;30:113-5.
pediatric centers are actively pursuing organ dona- http://dx.doi.org/10.5915/30-3-9828
tion after cardiac death (DCD), when cardiopul- 2. Lantos J. When parents request seemingly futile
monary functions have stopped, especially for the treatment for their child. Mt Sinai J of Med.
purpose of kidney donation. Many controversies and 2006:73(3);587-9. PubMed PMID: 16758094
JIMA: Volume 43, 2011 - Page 193 jima.imana.org
3. Appel JM. Mixed motives, mixed outcomes: when of life and signs of death, brain death and other
accused parents won't agree to withdraw care. J Med mixed messages at the end of life. J Child Health
Ethics. 2009:35;635-7. http://doi.org/hgq Care. 2008 Jun;12(2):92-105. http://doi.org/bx2z6g
4. Wellesley H, Jenkins I. Withholding and withdraw- 7. Harrison CH, Laussen PC. Controversy and consen-
ing life-sustaining treatment in children. Pediatric sus on pediatric donation after cardiac death: ethical
Anesthesia. 2009:9;972-8. http://doi.org/hgr issues and institutional process. Transplantation
5. IMANA Ethics Committee. Islamic Medical Ethics: Proceedings. 2008:40;1044-7. http://doi.org/hgs
The IMANA Perspective. J Islam Med Assoc. 8. The Glorious Qur’an. Chapter 40, Verse 68
2005;37:33-42. http://dx.doi.org/10.5915/37-1-5528 9. The Glorious Qur’an Chapter 3, Verse 145.
6. MacDonald EM, Liben S, Carvenale FA, et al. Signs
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