A terminally ill child is a child who has no expectation of a cure for his or her disease or illness. this study material will help the medical professionals to learn more about caring for a terminally ill child.
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2. INTRODUCTION
Developmental psychologists and
thanatologists(Thanatology is the scientific study of death
and the losses brought about as a result.)have suggested that
death education be part of everyone's schooling since
all got affected by it.
Death education includes programs that teach about death dying
and grief, and are designed to help all people successfully deal
with death and dying. Crisis intervention education is one type
of death education program
4. MEANING OF TERMINALLYILLCHILD
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.
5. PARENTAL DECISION MAKING
• When the death is unexpected, the confusion of emergency services and
possibly an intensive care setting presents challenges to the parents as
they are asked to make difficult choices.
• If the child has experienced a life threatening illness that has now
reached its terminal phase, parents are often unprepared for the reality
of their child’s impending death.
Nurses should ensure the families that there are options. Thenurse’sfirst
responsibility is to explore the family’s wishes.
6. NURSING RESPONSBILITIES
• 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.
• Thechild’sageordevelopmentalstageisconsidered.
• Ashared decision making is important tothe child’sand family’s emotional health.
• Parents require professional support and guidance in this.
• Adolescents have autonomy in decision making with regard to care and treatment.
8. HOSPITAL
Families may choose to remain in the hospital to
provide care in his unstable condition and home
care is not an option.
Then the setting should me made homelike as
possible.
Familiar items of child are encouraged to bring
There should be a consistent, coordinated care
plan for the family’s comfort.
9. HOME CARE
Some families prefer to take child
home and receive service from home
care agency.
Periodic visits of nurses to
administer medication, equipment
or supplies are provided.
The health care team promote
this in the belief of providing
hospice care to the child.
10. HOSPICE CARE
• Hospice is a community health care
organization that specializes in the care of
dying patients by combining the hospice
philosophy with principles of palliativecare.
• Management of physical, psychological, social
and spiritual needs of child and family.
• Care is provided by a multidisciplinary group of
professionals inthe patient’s home.It is based
on certain concepts.
11. CONCEPTS OF HOSPICE CARE
1. Family members are the principal care givers and are supported
by team of professional and volunteer staff.
2. Thepriorityofcareiscomfort.Thechild’sneeds are considered.
Pain and symptom control are primary concerns and no extra
ordinary efforts are taken to prolong life.
3. Family’sneedsareconsideredtobeasimportantas child’s
needs.
4. It is considered with the family’s post death adjustment and
care may continue for one year or more.
14. INFANTS
Death has least significance to them especially
< 6 months of age.
TODDLER
Instead of understanding death they will be more affected by the
change in life style.
PRESCHOOLER
They believe their thoughts are sufficient to cause death; the
consequence is the burden of guilt, shame and punishment.
They seen death as departure, a kind of sleep.
They may recognize the fact of physical death but do not separate
it from living abilities.
They have no understanding of inevitability of death
15. SCHOOLER
They associate misdeeds or bad thoughts with
causing death and feel intense guilt and
responsibility for the event.-
They respond well to the logical explanations
about death.
They have a deeper understanding about death.
They personify death as devil, monster etc.
By age of 9 – 10 they have an adult concept of
death, realizing it is inevitable, universal and
irreversible.
16. ADOLESCENTS
They have a mature understanding
of death
They are still influenced by the
remnants of magical thinking and
are subject to guilt and shame.
They are likely to see deviations
from accepted behavior as reasons
for their illness.
18. PALLIATIVE CARE
Who defines :- active total care of patients whose disease is
not responsive to curative treatment. Control of pain, of other
symptoms and of psychological, social and spiritual problems
is paramount. The goal of palliative care is to achieve the best
possible quality of life for patients
19. NURSING MANAGEMENT
1.Fear of pain and
suffering
2.Pain and symptom
management
3.Fear of dying alone
4.Fear of actual death
20. Fear of pain andsuffering
The presence of unrelieved pain in a terminally ill child can
have effects on the quality of life of child and family.
Parents feel as unendurable, results in feelings of helplessness, a
sense that they must be present and vigilant to get the necessary
pain medications.
Nurses can alleviate the fear of pain and suffering by providing
interventions aimed at treating the pain and symptoms
associated with the terminal process in children.
21. Pain and symptommanagement
Pain control for children in the terminal stages of illness or
injury must be given the highest priority.
The current standard for treating children’s pain follows the
WHO analgesic stepladder, which promotes tailoring the pain
interventions to the child’s level of reported pain.
Pain should be assessed frequently and medications adjusted as
necessary. Opioid drug such as morphine should be given for severe
pain.
Along with drug therapy, distraction, relaxation techniques and
guided imagery should be used.
22. Symptoms during their terminal course
as a result of their disease process or as
side effect of medication.
The symptoms include fatigue, nausea
and vomiting, constipation, anorexia,
dyspnea, congestion, seizures, anxiety,
depression, restlessness, agitation and
confusion.
The symptoms should be managed with
appropriate medications or treatments
and with interventions such as
repositioning, relaxation, massage and
other measures to maintain comfort and
quality of life.
24. Fear of dying alone
When child is being treated at home, the burden of care on parents and family members
can be great.
Nurse can assist the family helping them arrange shifts so that friends or other family
members to be present with child and they could rest.
If the family is with limited resource, church or hospice could provide volunteers to sit
with children.
When the child is dying in the hospital, parents should be given full access to the child
at all times.
If the parents need to leave, they should be provided with a means of immediate
communication and alerted if staff noted any change in the child’s condition that may
indicate imminent death.
25. Fear of actual death
Home deaths:
The majority of children receive hospice care die at home, often in their own room
with family, pets and other loved possessions around them.
The change in respiratory pattern is the most distressing change for parents to
observe. Families should be reassured that it is not distressing to child but is
normal processing of death.
The use of opioids can slow the respirations to make child breath more easily. Over
hydration also result in noisy respiration.
Families have the option of admitting the child in hospital if they feel unable to deal
with death.
26. HOSPITAL DEATHS
There is an increased presence of nurses and health team to
provide comfort.
A child in ICU often requires active withdrawal of life
supporting intervention such as bypass machine or ventilator.
But this situation raises ethical issues.
After death, parents should be allowed to remain with body
or rock the body if they wish.
A sibling needs preparation for post death services. They
should be permitted to stay as long as they wish and also give
private time to say good bye.
Parents should prepare the sibling.
27. NURSING INTERVENTIONS
Pain –
• limit unnecessary painful procedures
• sedation and giving pre-emptive analgesia prior to a procedure
(e.g., including sucrose for procedures in neonates)
• Address anxiety, sense of fear or lack of control.
• Consider relaxation, hypnosis, art/pet/play therapy,
acupuncture/acupressure, biofeedback, massage, heat/cold,
yoga,
28. Dyspnea or air hunger-
• Suction secretions if present
• positioning, comfortable loose clothing,
fan to provide cool, blowing air.
• Limit volume of IV fluids, consider
diuretics if fluid overload/ pulmonary
oedema present.
• Behavioral strategies including
breathing exercises, guided imagery,
relaxation, music
29. Fatigue –
• Sleep hygiene
• Gentle exercise
• Address potentially contributing factors
(e.g., anemia, depression, side effects of
medications)
Tryptophan is an
essential amino acid that
cannot be produced by
the human body and
must be obtained
through your diet,
primarily from animal or
plant based protein
sources.
30. Nausea/vomiting –
• Consider dietary modifications (bland, soft, adjust
timing/ volume of foods or feeds)
• Aromatherapy: peppermint, lavender, acupuncture/
• Constipation - Increase fibers in diet, encourage
fluids
31. Oral lesions/dysphagia –
• Oral hygiene and appropriate liquid, solid and
oral medication formulation
• Treat infections, complications (mucositis,
pharyngitis, dental abscess,
esophagitis).Oropharyngeal motility study
and speech consultation
Dysphagia refers
to a difficulty in
swallowing
32. Pruritus –
• Moisturize skin, Trim child’s
nails to prevent excoriation,
Try specialized anti-itch
lotions,
• Apply cold packs,
Counter stimulation,
distraction, and
relaxation.
34. Anxiety –
• Psychotherapy (individual and
family), behavioural techniques
Agitation/terminal restlessness –
• Evaluate for drug causes, Educate family,
Orient and reassure child; provide calm.
35. Educating family about organ donation
• Benefit another human being
• irreversible cessation of
neurologic function of the
brain
• discuss the topic with family
• Healthy child who dies
unexpectedly, children with cancer,
chronic disease etc. should be
considered for organ donation
36. GRIEF AND BEREAVEMENT
•Grief is the emotional response to that we
feel after losing someone.
•Bereavement is the acknowledgment of
the fact that one has experienced a death.
38. BEREAVEMENT
The word 'bereavement' comes from the ancient German for
'seize by violence'.
Today the word 'bereavement' is used to describe the period
of grief and mourning we go through after someone close to
us dies.
Bereavement is about trying to accept what happened,
learning to adjust to life without that person
40. the importance of mourning
Mourning allows to say goodbye.
Seeing the body, watching the burial, or scattering the
ashes is a way of affirming what has happened.
Sometimes we need to see evidence that a person
really has died before we can truly enter into the
grieving process.
41. bereavement counselling
It help people cope up more effectively with the death of their
child or a loved one. Specifically, bereavement counselling can:
Offer an understanding of the mourning process
Explore areas that could potentially prevent you from moving
on
help resolve areas of conflict still remaining help you to adjust
to a new sense of self address possible issues of depression or
suicidal thoughts
42. conclusion
Knowledge about hospitalization, terminally ill
child and the nursing management help nurses
to provide the adequate and quality care, to
support the family and child and to help her by
self satisfaction. Even though time heals the
wound, an adequate support accelerates the
process.
