A terminal illness in a child is traumatic for the child and family as it destroys their life plans. A terminally ill child is one who will die soon from an incurable disease. Nursing care involves providing age-appropriate information to the child and family, managing symptoms, and supporting the emotional needs of all involved through the end of life. Decision making is a collaborative process that considers the child and family's needs and wishes. The goal is to ensure the child's comfort and allow them to live fully until death.

3. NURSING CARE OF
TERMINALLY ILL AND
DYING CHILD
Presented by:
K. Sivasakthi
M.sc nursing,
Dept. of CHN,
Con – Pims.

5. A terminal illness of a child is a
traumatic experience for both
the child and the family. The
illness destroys their current life.

6. • Death is treated in culture as an inevitable
component of fate. Mature people are aware that
it will come, they do not know only when.

7. • According to American Academy of pediatric:
“terminally ill child is a child who has no expectation
of cure from his or her disease or illness, but who
needs as much care and comfort as can be provided.
Knowing what a dying child understands about his or
her condition, as well as fears, feelings, emotions,
and physical changes that occur, may help family
manage the final process better”.

8. • A disease that cannot be cured and that is
reasonably expected to result in the death of the
child within a short period of time is termed as
terminal illness. This term is more commonly
used for progressive diseases such as cancer or
advanced heart disease than for trauma. It
indicates a disease which will eventually end the
life of the sufferer.

9. CHRONIC ILLNESS
Cancer
Neurodegenerative and metabolic diseases
Cystic fibrosis
Disorders of muscle
Cardiac diseases
Hepatic failure
Renal failure

12. INFANTS:
Death has least significance to them especially < 6
months of age.

13. • TODDLER
Toddlers view death in relation to the loss of a caretaker
and the subsequent emptiness in their lives.
Children of this age react to the dying process based upon
the sadness, anger and anxiety conveyed by their parents.
Reactions will be expressed through crying, attachment to
primary caregiver, and separation anxiety.

14. • PRESCHOOLERS
➢Preschoolers view death as a separation or departure
and believe it to be only temporary.
➢Death is also seen as reversible.
➢Magical thinking and egocentricity at this age often leads
to guilt and shame because children may believe that
their thoughts or actions caused the death.
➢Preschooler facing an impending death frequently views
their condition as punishment for behaviors or thoughts.

15. • SCHOOL-AGE CHILDREN
➢By the school age years, death begins to be
understood as a sad and irreversible event, yet it
still may be considered inevitable only for adults.
➢ By the age of 10 yrs or so, children begin to
understand that they too can die.
➢ They may continue to believe that thoughts or
actions can cause death or that death serves as
a punishment for wrong doing.

16. • SCHOOL-AGE CHILDREN
➢School age children may wonder why they are ill
and must die so young.
➢They may also fear being without their parents
love and support, which they have always
known.

17. • ADOLESCENTS
➢Most adolescents have a fully developed
understanding of death as inevitable and
irreversible.
➢As a result of their illness, adolescents may
become isolated from their peers.
➢The terminal illness or disability of a peer forces
adolescents to face and question their own
mortality and wholeness abruptly and unwillingly.

19. • The terminal illness of a child is, as previously
reported, also a traumatic experience for their
family, especially the closest one: parents and
siblings. The reaction to the illness has primarily
the emotional dimension. It has the form of fear,
anxiety, and a sense of danger.
• Moreover, it does not manifest fully, but it grows,
evolves.

20. • The following stages of the reaction of the closest
relatives of the child to their illness are distinguished:
1. Denial and isolation.
2. Strong emotional reaction of the nature of rebellion.
3. Negotiation.
4. Depression.
5. Reconciliation.

27. NURSING RESPONSIBILITIES:
 Honest information about their illness,
treatment and prognosis.
 An open conversation early in the
course of illness
 Providing appropriate literature
 Decisions regarding involving child in
care during their dying process and
death, is an individual matter.

28. CONT.,
 The child’s age or developmental stage is
considered.
 A shared decision making is important to
the child and family’s emotional health.
 Parents require professional support and
guidance in this.
 Adolescents have autonomy in decision
making with regard to care and treatment

29. CARE OF DYING
CHILDREN

30. CARE OF DYING CHILDREN
A terminally ill child is a child that has no expectation
of cure from his or her disease or illness, but requires as
much care and comfort as can be provided. Knowing
what a dying child understands about his or her
condition, as well as fears, feelings, emotions, and
physical changes that occur, may help family manage
the final process better.

31. INFANTS-:
Congenital anomalies
Respiratory distress
syndrome
Sudden infant death
syndrome.

32. 5-9yrs CHILDREN-:
• Accidental injuries
• Malignant neoplasm
• Congenital anomalies
• Homicide
• Heart disease.

33. 10-14yrs CHILDREN-:
• Suicide
• Accidental injury
• Malignant neoplasm

34. 15-19yrs CHILDREN-:
• Homicide
• Suicide
• Malignant neoplasm
• Accidents
• Heart diseases.

35. DISCUSSING DEATH WITH
CHILDREN
Infants
 Comforting touch and holding are as
important for the infant as the caregiver.

36. CONT.,
For toddler
Use concrete language. Avoid
misleading terms for death,
such as "sleep" and "passed
away."

37. CONT.,
Young children
• Honest and consistent with your
response.
• If they ask a question that you do
not know the answer to, it is
acceptable for you to say so, rather
than make up an answer.

38. CONT.,
Teenagers
May want to discuss death with a
friend or someone other than a
parent.
Encourage communication in any
manner that will help the child
express his/her fears and concerns.

39. • CHILD’S RESPONSE
➢A child who is dying wants to feel safe and
does not want to be alone or in pain.
➢The frequently traumatizing experiences
of a chronic condition and its treatment
tend to make children more mature and
wise beyond their years.

40. • CHILD’S RESPONSE
➢Children with a terminal illness
see treatment as worse than
death.
➢Children may speak of seeing or even
interacting with angels or the higher being
recognized by their specific faith.

41. • CHILD’S RESPONSE
➢They may also speak of going to heaven to be
with angels or other spiritual beings.
➢A child’s death may not occur as smoothly until
parents tell the child it is all right to die.

42. • PARENT’S RESPONSE
➢Every parent faces and begins to
cope with the possibility of the child’s
death.
➢Some parents may find it difficult or
unacceptable to discontinue treatment.
➢They may choose to continue treatment of
a curative rather than a palliative nature.

43. • SIBLING’S RESPONSE
➢Siblings may experience emotions same as
those experienced by their parents.
➢ In relation to their level of cognition and
development, they may not be as equipped to
understand, cope, and work their way through
the grieving process as smoothly and
successfully.

44. GRIEF AND BEREAVEMENT

45. DECISION MAKING AT THE
END OF LIFE
 The American Nurses Association code for nurses (2004) does not
support the active intent on the part of a nurse to end a person’s
life.
 It does permit the nurse to provide interventions to relieve
symptoms in the dying child even when the interventions involve
substantial risk of hastening death.

46. HEALTHCARE TEAM DECISION
MAKING
 Decisions by physicians regarding
care are often made on the basis of
the progression of the disease.
 Provide cure from disease or
restoration of health.
 The impact of such treatment on
child.
 The child’s overall prognosis.

47. • PARENTAL DECION MAKING
 Parents are often unprepared for the
reality of their child’s impending
death.
 When the death is unexpected, as in
case of accidents or trauma, the
confusion of emergency services
made challenges to parents as they
are asked to make difficult choices.

48. ➢A routine for sleep and rest.
➢Nutritional considerations.
➢Changes in elimination.
➢Skin care.
➢Respiratory changes.
➢Pain management.

49. PHARMACOLOGICAL PAIN
MANAGEMENT
Pharmacological pain management refers to the
use of pharmaceutical drugs or medications to
relieve pain. Analgesics (mild pain relievers)
 Sedation (usually given by IV)
 Anesthesia (usually given by IV)
 Topical anesthetics (cream put on the skin to
numb the area)
 Pain relievers

50. NON-PHARMACOLOGICAL PAIN
MANAGEMENT
Hypnosis
Imagery
Prayer or mediation
Distraction
Relaxation

51. ➢Time to be a child.
➢Communication/listening/expression of
fears or anger.
➢Depression and withdrawal.
➢Spiritual needs.
➢Wish fulfillment.
➢Comfort in knowing they are not alone in
the dying process.

52. • General
➢Stay with the family; sit quietly if they prefer not
to talk .
➢Accept the family’s grief reactions; avoid
judgmental statements.
➢Avoid offering rationalization for child’s death.
➢ Avoid artificial consolation
➢ Focus on feelings by using a feeling word in the
statement.

53. SUPPORTIVE / PALLIATIVE CARE
• Supportive or palliative care aimed at comfort versus
cure and treatment. The decision to accept palliative care
versus aggressive treatment is often a decision parents
struggle with.

54. PALLIATIVE CARE SERVICES:
 Psychosocial support and intervention to help the patient and
family members.
 Equipment for delivery of medications, nutrition, oxygen,
and suction.
 Equipment including special beds, toilets, chairs,
wheelchairs, and bath requirements.
 Skilled nursing care, physicians, pharmacists, and specialists
 Medication and nutrition support.

55. CONT.,
Spiritual, religious, and cultural needs/requests
Special services for siblings or children (i.e., support
groups)
Respite care allowing the family to rest
Bereavement care
Follow-up care for the family after the child has died

56. • At the time of death
➢Reassure the family that everything possible is being
done for the child, if they want lifesaving interventions
➢ Do everything possible to ensure the child’s comfort,
especially relieving pain.
➢Provide information that the family requests and be
honest .
➢Respect the emotional needs of the family members
➢Make every effort to arrange for family members if they
want to be present.
➢ Allow the family to stay with dead child for as long as
they wish.
➢Arrange for spiritual support

57. • After death
➢Attend the funeral or visitation if there was a
special closeness with the family.
➢Initiate and maintain contact
➢Discuss shared memories with the family.
➢Discourage the use of drugs or alcohol as a
method of escaping grief.
➢ Encourage family members to communicate their
feelings.

58. NURSING DIAGNOSIS

59. 1. Delayed growth and development related to terminal
illness or impending death.
 Encourage family to remain near child as much as possible to provide support.
 Encourage child to talk about feelings; help family as they encourage child to express feelings.
 Provide safe, acceptable outlets for aggression.
 Answer questions as honestly as possible.
 Explain all procedures and therapies, especially physical effects child will experience.
 Help the child distinguish between consequences of therapies and manifestations of disease
process.
 Structure hospital environment to allow maximal self- control and independence within the
limitations imposed by child’s developmental level and physical condition.
 Respect child’s need for privacy
 Provide for presence of customary support systems.

60. 2. Imbalance nutrition less than body requirement
related to loss of appetite, disinterest in food
 Offer any foods and fluids child requests
 Provide small meals and snacks several
times a day
 Avoid foods with strong odours
 Avoid excessive encouragement to eat or
drink
 Provide pleasant environment for eating
 Serve foods that require the least energy
to eat
 Feed slowly to conserve energy
 Administer anti-emetic, as prescribed
 Provide mouth care before and after
eating

61. 3. Fear/ anxiety related to diagnosis, tests,
therapies, and prognosis
 Limit interventions to palliation only; discuss need for non-palliative
treatment with family and physician
 Explain all procedures and other aspects of care to reduce fear
 Remain with child or provide for constant attendance
 Determine what family wants child to know about prognosis
 Emphasize importance of honesty
 Answer child’s questions as openly and honestly as possible
 Involve parents in child’s care
 Remain non-judegemental regarding child’s behaviour

62. JOURNALABSTRACT:
The Needs of Children with Terminal Illness: A Qualitative Study
Fanny Adistie, Valentina B. M. Lumbantobing, Nenden Nur Asriyani Maryam
Abstract:
• Purpose: The response of each child to terminal illness treatment is highly
individual. This will certainly affect the level and type of perceived needs. This
study is conducted to examine the needs of children with terminal illness from
the perspective of nurses and parents.

63. • Method: A qualitative descriptive study was conducted in this research. The data collection
process included in-depth interviews with eight nurses and eleven parents and focus group
discussion with seven nurses. The sampling technique used purposive sampling. Data were
analyzed using content analysis.
• Results: Based on the perspective of nurses and parents the needs of children with terminal
illness in the biological aspect require the fulfilment of basic biological needs, a therapy
programme with minimal side effects, intervention to improve comfort, optimal infection
prevention, and on-going care. While in the psychological aspects, the children and parents need
information, motivation, tools to overcome the anxiety of parents, parental involvement and
education for children and families. In the social aspect there are the children’s need to play, need
for school, and need for social support. In the spiritual aspect, the children need to be able to
pray, receive spiritual guidance, and also to have spiritual guidance to prepare for death, and die
with dignity.
• Conclusion: The needs of a child with terminal illness are complex and require special
attention from the nurse. Therefore, nurses have a very important role to be able to
comprehensively assess the needs of children with terminal illness in an effort to improve the
quality of life of children.

65. CONCLUSION
The dying patient has a variety of needs ranging from
the need for open communication to physiological and
spiritual needs. They should maintain selfcare as long as
possible. Families of the dying patient may like to assist
in providing care. The nurse should provide emotional
support for the grieving family.

66. BIBLIOGRAPHY:
• Book reference
• Pushpendra magon, Textbook of child health nursing”, 1st edition, Jaypee
publication, page no. 34-36
• “Wong’s essential of pediatric nursing”2nd South Asian edition, Elsevier
publisher, page no: 520-522
• “Parul dutta” Pediatric nursing 3rd edition published by sags, new delhi, page
no: 852-856
• Rimple sharma, “essential of pediatric nursing”, 2nd edition, jaypee
publication, page no: 496-501
• Net reference
 https://www.coursehero.com/file/183322504/CARE-OF-THE-
TERMINALLY-ILL-CHILDppt/
 https://www.slideshare.net/nehamalik69/terminal-illness-and-death-during-
childhood
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