CARE OF DYING

CHILD

BYSHIKHA.S.A

INFANTS AND TODDLERS

Infants and 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.

CHILD’S CONCEPT OF DEATH

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 behaviours or

thoughts.

PRESCHOOLERS-

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.

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.

SCHOOL-AGE

CHILDREN

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.

ADOLESCENTS

AGE COGNITIVE STAGE CONCEPT

0-2yr Sensory motor Death as loss of caretaker

2-7yr Preoperational Death as a reversible and

temporary separation

7-12yr Concrete operations Death as sad and

irreversible but not

necessarily inevitable

12+yr Formal operations Death as inevitable and

irreversible but often a

distant event

CONCEPTS OF DEATH

IN INFANTS-: Congenital anomalies, respiratory distress

syndrome, disorders related to short gestation and low

birth weight, and sudden infant death syndrome.

IN 5-9yrs CHILDREN-: Accidental injuries, malignant

neoplasm, congenital anomalies, homicide and heart

disease.

IN 10-14yrs CHILDREN-: Suicide, accidental injury,

malignant neoplasm

IN 15-19yrs CHILDREN-: Homicide, suicide, malignant

neoplasm, accidents, heart diseases.

CAUSES FOR DEATH IN CHILDREN

CHILD’S RESPONSE-

A child who is dying wants to feel safe and does not want

to be alone or in pain.

The frequently traumatising experiences of a chronic

condition and its treatment tend to make children more

mature and wise beyond their years.

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.

RESPONSE TO DEATH AND DYING

They may also speak of going to heaven to be with

angels or other spiritual beings.

In addition children may speak of going to play or be

with another child or relative who has already died. This

type of conversation may take place anywhere from

several weeks to days or hours before death. Such

behaviours are commonly referred to as nearing death

awareness.

A child’s death may not occur as smoothly until parents

tell the child it is all right to die.

CONT……

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.

PARENT’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.

Unresolved grief may contribute to many problems in

adult life.

They often need assistance to complete the process.

SIBLING’S RESPONSE

HOSPITAL

Family may choose to remain in the hospital to

receive care if the child’s illness or condition is

unstable and homecare is not an option or the

family is uncomfortable with providing care at home.

The setting should be made as homelike as

possible.

Families should be encouraged to bring familiar

items from the home.

TREATMENT OPTION FOR TERMINALLY ILL CHILDREN

Home care is often the option chosen by

physicians and families because of the

traditional view that a child must be considered

to have a life expectancy of less than 6mths to

be referred to hospice care.

HOME CARE

Hospice is a community health care organization that

specialises in the care of dying patients by combining the

hospice philosophy with the principles of palliative care.

Hospice philosophy regards dying as a natural process and

care of dying patients as including management of the

physical, psychological, social, and spiritual needs of the

patient and family.

HOSPICE CARE

Family members are the principal caregivers and are

supported by a team of professional and volunteer staff.

The priority of care is comfort.

The needs of the family are considered to be as important

as those of the patient.

Hospice is concerned with the family’s post death

adjustment, and care may continue for a year or more.

CONCEPTS OF HOSPICE CARE

The goal of hospice care is for children to live

life to the fullest without pain, with choices and

dignity, in the familiar environment of their

home, and with the support of their family.

CONT…..

ETHICAL CONSIDERATIONS IN “end of life”

DECISION MAKING

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.

DECISION MAKING AT THE END OF LIFE

When the prognosis for the patient is poor and death is

the expected outcome, it is ethically acceptable to

withhold or withdraw treatment that may cause pain and

suffering and provide interventions that promote comfort

and quality of life.

Providing palliative care for patients is the ethically correct

choice in such a circumstances.

CONT…….

Decisions by physicians regarding care are often made on

the basis of the progression of the disease or amount of

trauma, the availability of treatment options that would

provide cure from disease or restoration of health

the impact of such treatment on child

the child’s overall prognosis.

PHYSICIAN/HEALTH CARE TEAM

DECISION MAKING

If the child has experienced either a life threatening illness

or lived with a chronic illness that has now reached its

terminal phase, 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.

PARENTAL DECISION MAKING

Focus on quality of life

There can be joy and hope amidst the sadness and grief

Good symptom control

Whole-person approach: consider the dying person’s life

experience and current situation

Consider also the other people who matter to that person

Support autonomy and choice

Emphasize open and sensitive communication with patients,

family, colleagues

Managing pain: the WHO analgesic ladder for pain relief

PALLIATIVE CARE

FEAR OF PAIN AND SUFFERING

The presence of unrelieved pain in a terminally ill child can

have very detrimental effects on the quality of life

experienced by the child and family

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.

NURSING CARE OF THE CHILD AND

FAMILY AT THE END OF LIFE

The current standard of treating pain management in

children’s pain is according to the WHO’s analgesic

stepladder

This approach promotes tailoring the pain interventions to

the child’s level of reported pain.

Children’s pain should be assessed frequently, and

medications adjusted as necessary.

PAIN/SYMPTOM MANAGEMENT

When a child is being cared for at home, the burden of

care experienced by parents and family members can be

great.

When a child is dying in the hospital, parents should be

given full access to the child at all times.

Nurses should advocate for parent’s presence in intensive

care and emergency departments and attend to the

parent’s need for food , drinks, comfortable chairs, blankets

and pillows.

FEAR OF DYING ALONE

Home death

The child has slowly become less alert in the days before

the actual death.

The nurses can assist the family by providing them with

information about what changes will occur as the child

progresses through the dying process.

Nursing visits often become more frequent and longer in

duration to provide the family with additional support as the

death nears.

FEAR OF ACTUAL DEATH

Hospital death

Increased nursing presence and attendance to the child

and family’s needs provides comfort and support for many

families.

Nurses can assist these parents by providing detailed

information about what will happen as supportive

equipment is withdrawn, ensuring that appropriate pain

medications are administered to prevent pain during the

dying process.

CONT……

Nurse attempt to control the environment around the

family at this time by providing privacy, asking if they

would like to play music, softening lights and monitor

noises, and arranging for any religious or cultural

rituals that the family may want performed.

CONT……

General

Stay with the family; sit quietly if they prefer not to

talk .

Accept the family’s grief reactions; avoid

judgemental statements.

Avoid offering rationalization for child’s death.

Avoid artificial consolation

Focus on feelings by using a feeling word in the

statement.

SUPPORTING GRIEVING FAMILY

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.

Express personal feelings of loss or frustrations.

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

CONT……

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.

CONT…….