ach year in the united states, approximately 50,000 children die

and 500,000

children cope with life-threatening conditions. Worldwide these

numbers are in the millions.

1,2

Such children and their families require comprehensive,

compassionate, and developmentally appropriate palliative care.

Palliative care is a philosophy of care that evolved from the hospice philosophy to

meet the gaps in care for seriously ill and dying patients. The aims of pediatric palliative

care should best intersect with the aims of curing and healing, and this approach should

be instituted when diagnosis, intervention, and treatment are not limited to a disease

process, but rather become instrumental for improving the quality of life, maintaining

the dignity, and ameliorating the suffering of seriously ill or dying children in ways that

are appropriate to their upbringing, culture, and community.

3-7

Like hospice care, palliative

care recognizes that people of all ages die and that caregivers’ attention should

be focused on relieving patients’ pain and suffering. Furthermore, palliative care considers

the patient and family as a unique entity whose members require care both before

and after death. Palliative care recognizes the role of the physician as one key member

of an interdisciplinary team assisting patients and families with the myriad physical,

social, psychological, and spiritual needs that come into play when a child has a lifethreatening

illness.

Palliative care is appropriate for children with a wide range of conditions, even when

cure remains a distinct possibility (Table 1).

8

The American Academy of Pediatrics

5

has

supported concepts of palliative care, stating that “the components of palliative care are

offered at diagnosis and continued throughout the course of illness, whether the outcome

ends in cure or death.” Palliative care should be accessible in any setting, including

home, hospital, and school.

Primary care providers should be taught to recognize a child’s need for palliative care, to

assess the emotional and spiritual needs of the child and family, to facilitate advance care

planning, to assess and manage the child’s pain and symptoms, to provide bereavement

care to the child’s family, and to recognize the indications for a referral to a specialist.

Essentials of the assessment and planning of pediatric palliative care are presented in

Figure 1.

3-7,9-12

Generalists and specialists alike can and should provide palliative care

when needed. At a minimum the team should include a well-trained primary physician,

a care coordinator, and in some cases, a bereavement specialist. In addition, support

should be available from specialists such as child psychologists and child-life specialists

in order to help with the complex psychosocial problems faced by children with lifethreatening

conditions and their families.

Once a need for palliative care is identified, primary providers have a central role in initiating

critical discussions about the trajectory of illness and about advance care plane

approaches to and success of pediatric palliative care

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ning. Since a palliative care team may not be immediately

available, health care professionals must

anticipate and address pain and symptom management

while gathering a support team to address all

the physical, psychological, and spiritual concerns

of the child and family.

assessment and management

of pain and symptoms

Timely and skilled management of pain and symptoms

should be a cornerstone of each physician’s

care for children facing life-threatening conditions.

In addition, physicians can provide much-needed

support by educating the family about what to expect

as children move through the trajectory of illness.

Health care professionals attending to children

facing life-threatening conditions must be

willing and able to discuss the possibility of death,

the potential for physical and emotional suffering,

and the strategies for its prevention and treatment

frankly.

Although the importance of providing timely

management of pain and symptoms is well recognized,

such care is often lacking.

13

General practitioners

who wish to direct the care of children with

life-threatening or life-limiting conditions must

become familiar with selected pharmacologic and

nonpharmacologic treatments for pain, dyspnea,

nausea and vomiting, sialorrhea, and seizures (Table

2).

12,14

Health care providers should consult

with pediatric palliative care and pain specialists or

local hospice directors with pediatric expertise.

emotional and spiritual needs

A unique aspect of pediatric palliative care is that the

complex experience of life-threatening illness occurs,

by the very nature of the child as patient, within

the context of growth and development — physical,

emotional, social, psychological, and spiritual.

15

Thus, staff working with children who are facing a

life-threatening illness and their families must possess

fundamental knowledge and expertise in child

development and family systems.

Communication with children requires familiarity

with their normal emotional and spiritual development

(Table 3).

6,16-21

Effective staff members

are emotionally available, candid, and open to children’s

questions. They encourage feedback and the

opportunity for discussion.

19

Physicians also need

to support parents and other family members and

caregivers. Even as a child’s death approaches, parents

and caregivers should be encouraged to maintain

routine, age-appropriate disciplinary habits for

the child and to provide consistent and familiar routines.

Working at the child’s developmental level mandates

the use not only of oral communication, but

also of body language and symbolic (expressive)

methods of interacting. Commonly used techniques

of expressive communication with children include

drawing pictures, playing with stuffed animals,

writing stories or journals, playing or writing music,

and creating rituals. Meeting the child at his or

her level of development will encourage the child to

express hopes, dreams, fears, and reflections.

22,23

How children understand death depends on their

level of development (Table 4). A fully mature understanding

of death requires integrating the principles

of irreversibility, finality and nonfunctionality,

universality, and causality. In addition, the concept

of death is often influenced by personal, cultural,

and experiential factors.

16,18-21

Research suggests

that children understand death as a changed state as

early as three years of age, universality by about five

to six years of age, and personal mortality by eight to

nine years of age.

24

* Premature death is likely or expected with many of these conditions.

Table 1. Conditions Appropriate for Pediatric Palliative Care.*

Conditions for which curative treatment is possible but may fail

Advanced or progressive cancer or cancer with a poor prognosis

Complex and severe congenital or acquired heart disease

Conditions requiring intensive long-term treatment aimed at maintaining

the quality of life

Human immunodeficiency virus infection

Cystic fibrosis

Severe gastrointestinal disorders or malformations such as gastroschisis

Severe epidermolysis bullosa

Severe immunodeficiencies

Renal failure in cases in which dialysis, transplantation, or both are not available

or indicated

Chronic or severe respiratory failure

Muscular dystrophy

Progressive conditions in which treatment is exclusively palliative

after diagnosis

Progressive metabolic disorders

Certain chromosomal abnormalities such as trisomy 13 or trisomy 18

Severe forms of osteogenesis imperfecta

Conditions involving severe, nonprogressive disability, causing extreme vulnerability

to health complications

Severe cerebral palsy with recurrent infection or difficult-to-control

symptoms

Extreme prematurity

Severe neurologic sequelae of infectious disease

Hypoxic or anoxic brain injury

Holoprosencephaly or other severe brain malformations

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Figure 1. Essential Elements in the Approach to Pediatric Palliative Care.

Psychosocial Concerns

Practical Concerns

Spiritual Concerns

Advance Care Planning

Create and disseminate pharmacologic and nonpharmacologic

treatment plan

Place emergency medications in the home

Refer child to pain and palliative care specialists as needed

Address child and family’s fears and concerns honestly

Assure child and family they will not be abandoned

Address concerns of child’s siblings and extended family

Adjust care plan to meld with child and family’s coping

and communication styles

Communicate with child in a developmentally appropriate

fashion

Explain death concepts and developmental stages of

death understanding

Modify care plan and choices on basis of child’s previous

experiences

Consider referring child and family to mental health

professionals as needed

Make plan for follow-up of family after child’s death

Assure family members they will not be abandoned

Consider referring child to culturally appropriate spiritual

care provider

Offer to help explain child’s illness to spiritual provider,

with family’s permission

Allow time for child and family to reflect on life’s meaning

and purpose

Include key decision makers

Communicate decision-making information to entire team

Provide information as necessary to make the subject

understandable

Establish consensus regarding illness trajectory

Identify effect of illness on child’s functional capacity

and quality of life

Identify probable time until death

Establish whether goals are curative, uncertain, or

primarily comfort

Communicate goals to health care team

Create or disseminate medical plan (including do-notresuscitate

orders as necessary), reflecting choices for

specific interventions related to change in health status

Provide anticipatory guidance regarding physical

changes at time of or near death, whom to call, who

will manage child’s symptoms

Identify care coordinator and route of contact that is

always available

Recruit new personnel as needed to achieve goals

(such as hospice or palliative care specialists)

Make plan-of-care information available to team

Assure child or family that stated goals of care can be

achieved in preferred environment

Create and disseminate plan for location of death, contacts

at time of death, and pronouncement of death

Create and disseminate care plan for all relevant

environments

Try to visit care sites such as school to provide education

and support, if possible in partnership with

community agencies

Order medical equipment such as wheelchair, suction,

commode, or hospital bed for anticipated needs

Offer assistance from social services, financial

counselors, or other supports as available in the

community

Practice Sphere Area of Assessment

Physical Concerns

Plan

Identify pain or other symptoms

Identify child and family’s fears

and concerns

Identify child’s coping and

communication styles

Discuss previous experiences with

death, dying, other traumatic life

events, or special issues such as

substance abuse or suicidality

Assess resources for bereavement

support

Perform a spiritual assessment

(review child’s hopes, dreams,

values, life meaning, view of role

of prayer and ritual, beliefs

regarding death)

Identify decision makers

Inquire about the financial burden

child’s illness places on family

Address child’s current and

future functional status

Become familiar with child’s home

or school environment

Establish child and family’s

preferences for location of care

Establish means of communication

and coordination with

health care team

Think about issues regarding care

or concerns near end of life

Discuss illness trajectory

Identify goals of care

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Spirituality in childhood is also developmentally

defined

25,26

(Table 3). Although spirituality and religiousness

may be closely overlapping constructs

for adults, children, particularly younger children,

may experience spirituality without any personal religious

beliefs, values, and practices. Rather, spirituality

is more involved in children’s approaches to

understanding life. Common spiritual concerns include

unconditional love, forgiveness, hope, safety

and security, and legacy (children, like adults, want

to know that their life has made a difference, not

only through accomplishments, but also by touching

others). Children are also concerned about loneliness

(separation from the important elements of

their world, such as parents, siblings, school, and

pets) and loss of wholeness (being unable to do

what they want to do).

26

Spiritual assessment centers on understanding

the things that are important to the child, as well as

the meaning of the child’s life to both the child and

his or her family and the child’s hopes and dreams

for the future, realistic or not in the context of disease.

Transcendent relationships exist between infants

and very young children and their parents and

siblings — as exemplified by the connection between

a nursing infant and mother. As children develop,

transcendent matters such as relationships

with God or other higher powers may become important.

25

To foster a child’s spiritual growth, the physician

can be cognizant of and respect the way spirituality

changes with age; provide opportunities for the ill

child to participate in religious observances at an

age-appropriate level; support the growth and maintenance

of trusting, secure, and loving relationships;

provide support in times of crisis and despair; and

allow time for reflection and questioning as part of

a child’s normal spiritual development. Additional

methods for spiritual assessment and management

have been outlined elsewhere.

25,26

bereavement care

The process of parent–child attachment begins the

moment a child is born, if not before.

27,28

The loss

of a child is one of the most stressful events possible,

producing a crisis of meaning in which parents

search for cognitive mastery and renewed purpose.

29

Grief is a lifelong process; parents typically

never fully “get over” the loss of a child but rather

learn to adjust and to integrate the loss into their

lives. Resumption of everyday function, derivation

of pleasure from life, and establishment of new relationships

are all signs of healing from grief.

Parents who lose a child are at high risk for complicated

grief reactions and may be at increased risk

for death from both natural and unnatural causes.

30

Complicated grief reactions deviate from the expected

for a given society and culture.

31

These reactions

include absent grief, delayed grief, and prolonged

or unresolved grief.

32

Absent grief refers to the inhibition

of typical expressions of grief or denial of

the loss or its associated feelings. Delayed grief occurs

when there is a substantial time between loss

and the onset of the grief reaction, from weeks to

years. Prolonged grief is associated with persistent

depression, preoccupation with loss, overidentification

with and yearning for the deceased, and social

inhibition that does not change over time. Bereaved

parents appear to be at greatest risk for prolonged

grief.

33

Recent research, however, suggests that the

differences in levels of psychosocial dysfunction between

prolonged grief, classified as pathologic, and

normal grief in bereaved parents may be subtle.

32

Children also grieve. In the setting of a life-threatening

condition, children may grieve loss of function,

interaction, and participation in developmentally

appropriate activities of daily living such as play

and school. Children nearing the end of life may

grieve impending death and suffer with concerns

about how survivors will cope. Unfortunately, myths

abound regarding children and their capacity to

grieve (Table 5). Siblings may also be at risk for a

* SL denotes sublingual, PR per rectum, and IV intravenous.

† Infants younger than six months of age should receive one third to one half of

this dose.

‡The regimen for infants is provided in Taketomo et al.

14

Table 2. Medications Used for Common Symptoms in Pediatric Palliative

Care.*

Indication Medication Initial Regimen

Pain or dyspnea Morphine 0.3 mg/kg of body weight orally,

SL, or PR every 3–4 hr†

Agitation Lorazepam

Haloperidol

0.05 mg/kg orally, SL, or PR every

4–6 hr

0.01–0.02 mg/kg orally, SL, or PR

every 8–12 hr

Pruritus Diphenhydramine 0.5–1.0 mg/kg orally every 6–8 hr

Nausea and vomiting Prochlorperazine

Ondansetron

0.1–0.15 mg/kg orally or PR every

6–8 hr

0.15 mg/kg orally or IV every

6–8 hr

Seizures Diazepam 0.3–0.5 mg/kg PR every 2–4 hr

Secretions Hyoscyamine‡ 0.0625–0.125 mg orally or SL every

4 hr for children 2–12 yr

0.125–0.25 mg orally or SL every

4 hr for children >12 yr

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version of complicated grief.

34-39

Special attention

must be given not only to siblings, but also to classmates

and peers in the community, since a child’s

death affects even those outside the obvious circle

of family and friends. Bereavement resources are

listed in Supplementary Appendix 1 (available with

the full text of this article at www.nejm.org)

.

advance care planning

Advance care planning is the process of helping patients

and families make known their wishes about

what to do in case of serious or life-threatening

problems. Those responsible for advance care planning

must become familiar with relevant local, state,

and federal laws and practices, such as those regarding

do-not-resuscitate orders and standards for surrogate

decision making for minors or adults who are

not capable of making medical decisions.

40

Advance care planning is a four-step process.

First, the decision makers are identified and included

in the process. Second, the patient’s or family’s

understanding of the illness and prognosis is determined

and the impending death is described in ways

in which the child and the family can understand.

Third, on the basis of their understanding of illness

and prognosis, the goals of care are established concerning

current and future intervention — curative,

uncertain, or primarily focused on providing comfort.

Finally, shared decisions about the current and

future use or abandonment of life-sustaining techniques

and aggressive medical interventions, such

as mechanical ventilation or artificial hydration, are

Table 3. Development of Death Concepts and Spirituality in Children.

Age

Range Characteristics

Predominant

Concepts of Death Spiritual Development Interventions

0–2 yr Has sensory and motor relationship

with environment

Has limited language skills

Achieves object permanence

May sense that something is

wrong

None Faith reflects trust and hope

in others

Need for sense of self-worth

and love

Provide maximal physical

comfort, familiar persons

and transitional objects

(favorite toys), and consistency

Use simple physical communication

>2–6 yr Uses magical and animistic

thinking

Is egocentric

Thinking is irreversible

Engages in symbolic play

Developing language skills

Believes death is temporary

and reversible, like sleep

Does not personalize death

Believes death can be caused

by thoughts

Faith is magical and imaginative

Participation in ritual becomes

important

Need for courage

Minimize separation from

parents

Correct perceptions of illness

as punishment

Evaluate for sense of guilt

and assuage if present

Use precise language (dying,

dead)

>6–12 yr Has concrete thoughts Development of adult concepts

of death

Understands that death can

be personal

Interested in physiology and

details of death

Faith concerns right and

wrong

May accept external interpretations

as the truth

Connects ritual with personal

identity

Evaluate child’s fears of

abandonment

Be truthful

Provide concrete details if requested

Support child’s efforts to

achieve control and

mastery

Maintain access to peers

Allow child to participate in

decision making

>12–18 yr Generality of thinking

Reality becomes objective

Capable of self-reflection

Body image and self-esteem

paramount

Explores nonphysical explanations

of death

Begins to accept internal interpretations

as the truth

Evolution of relationship with

God or higher power

Searches for meaning, purpose,

hope, and value

of life

Reinforce child’s self-esteem

Allow child to express strong

feelings

Allow child privacy

Promote child’s independence

Promote access to peers

Be truthful

Allow child to participate in

decision making

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made. As a general rule, decisions made by the patient

and his or her family, even if they reflect beliefs

and values that differ from those of the primary

health care team, should be respected. If these decisions

do not seem to fit with the presumed understanding

of illness or goals of care, or if the patient

or his or her family does not understand the outcomes

of these decisions, continued review and reflection

and discussion of options are warranted.

An ethicist may need to be consulted if the conflict

cannot be resolved.

Advance directives — written documents that describe

a patient’s or a family’s wishes about health

care, designed to capture essential elements of advance

care planning — are important in this setting.

There are two main types, “instructive” directives

and “proxy” directives. An instructive directive is

written by someone with decision-making capacity

and becomes effective when that capacity is lost. Examples

include living wills, Natural Death Act documents,

and medical directives. A proxy directive

authorizes a specific person or persons to make

health care decisions for a patient in the event that

the patient loses decision-making capacity. The durable

power of attorney for health care is an example

of a proxy directive. The 1990 Patient Self-Determination

Act passed by Congress set the stage for

adults to express their wishes regarding future

health care decisions in writing.

41

As discussed below,

advance directives written by children under the

age of 18 do not currently have legal standing.

The success of medicine in improving survival rates

among children with cancer, congenital heart disease,

and prematurity has had the unintended consequence

of offering false hope to parents that death

can always be averted.

4

In comparison with the

2.3 million deaths of adults each year in the United

States, death and life-threatening illnesses in children

are relatively rare. Disorders leading to the

death of children, with the exception of childhood

cancer, encompass many lesser known conditions,

including disorders related to short gestation and

low birth weight, the sudden infant death syndrome,

congenital malformations, deformations, and chromosomal

abnormalities.

2,42

For an adult, particularly

one who is elderly or suffering from a long, debilitating

illness, death is often an acceptable, and even

a desired, outcome

43

; in contrast, a child’s death remains

emotionally difficult, unnatural, and unexpected

for families and health care providers alike.

Technology has also contributed to the long-term

survival of a new cohort of children with rare disorders

and complex medical conditions

44,45

who in a

previous era would have died earlier. Many such children

are prone to repeated life-threatening or lifelimiting

complications. Prognostication for children

with such complex problems is extremely

challenging, making it difficult for physicians to determine

whether or when such children might be

dying.

barriers to care

Table 4. Elements of Complete Developmental Understanding of Death.

Concept of Death

Questions Suggestive

of Incomplete Understanding

Implications of Incomplete

Understanding

Irreversibility (dead things will not live

again)

How long do you stay dead?

When is my (dead pet) coming back?

Can I “un-dead” someone?

Can you get alive again when you are

dead?

Prevents detachment of personal

ties, the first step in mourning

Finality or nonfunctionality

(all life-defining functions end at death)

What do you do when you are dead?

Can you see when you are dead?

How do you eat underground?

Do dead people get sad?

Preoccupation with the potential for

physical suffering of the dead

person

Universality (all living things die) Does everyone die?

Do children die?

Do I have to die?

When will I die?

May view death as punishment for

actions or thoughts of child or

the dead person

May lead to guilt and shame

Causality (realistic understanding of the

causes of death)

Why do people die?

Do people die because they are bad?

Why did my (pet) die?

Can I wish someone dead?

May cause excessive guilt

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In the setting of remarkable technical advances,

families — and some physicians — may view death

more as a therapeutic misadventure than as a natural

process resulting from disease. Recognition that

death is inevitable often lags behind the reality of the

medical condition, leading to a treatment approach

that is inappropriately aggressive. For example, a

child with multiple leukemic relapses may be offered

a third or fourth bone marrow transplantation

to attempt to induce a short-term remission or to

maintain some quality of life, but with no hope of

cure. In such a setting, essential palliative care services

might be rejected by the parents, who will continue

to view the procedure as curative.

Alternatively, health care providers may assume

that a child is dying when, in fact, the likelihood of

Table 5. Myths and Realities of Childhood Grief.

Topic Myths Realities

Do children and adolescents

grieve?

Young children do not grieve. All children grieve.

Children do not grieve as much as adults. Children and adults express grief differently but as intensely.

Children are lucky because they are too young to understand.

Children are vulnerable in their grieving.

Children should be protected from pain and suffering

to maintain their innocence.

Children cannot be protected from death in play, the

media, or life experiences.

Children can resolve grief quickly. Children’s grief has no time limits.

Children and adolescents understand, experience, and

express grief identically.

Children and adolescents are developmentally distinct.

Should children and adolescents

be exposed to a

loved one who is dying?

Children will be bewildered by being with a loved one

who is dying.

Children need to understand and make sense of their

experiences in order to help them learn that dying

and death are a part of life.

Children will be traumatized by their last encounters

with a dying person.

Children will value having had the opportunity to

spend time with a loved one during that person’s

last days and weeks.

Happy times that children share with their loved one

will be overshadowed by the experience of watching

that person die.

Children can learn values through participation in the

death of a loved one.

Children should be protected from seeing a loved one

die.

Children may later resent their exclusion; their involvement

will assist with grieving.

Should children take part in

funerals or other postdeath

rituals?

Children should not be permitted to take part in such

rituals.

Children can benefit in meaningful ways by helping

to plan and by attending funerals, including allowing

them opportunities for questions and learning

from the emotional reactions of adults.

If children are allowed to participate, their participation

should be limited and they should be protected

from seeing strong emotional reactions.

Children can benefit from the support of others to help

overcome feelings of isolation.

Adults know better whether or not to allow a child to

participate in such rituals after the death.

Difficulties arise either from forcing children to participate

against their will or from excluding those

wishing to be included.

Are dying children aware of

their situation, and how

can they be helped?

Dying children <10 years of age are not aware that they

are dying.

Dying children know they are dying; adult denial is ineffective

in the face of children’s emotional perceptiveness.

Dying children do not experience anxiety because they

are unaware that they are dying.

Dying children experience fear, loneliness, and anxiety.

Dying children have no concerns for themselves or

others.

Dying children worry, may try to put their affairs in order,

may strive to protect their parents, and fear being

forgotten.

Dying children’s questions should not be answered. Dying children need honest answers and unconditional

love and support.

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recovery to a previous level of function is probable,

even though that quality of life may not be perceived

to be adequate by the providers. For example, health

care providers might question the use of intensive

care support for a child in a persistent vegetative

state in whom anticonvulsant-induced pancreatitis

develops. In these complex situations, palliative care

services may be rejected by physicians and parents

alike and perceived as tantamount to “giving up on

the child,”

44

even though pediatric palliative care is

philosophically committed to helping in such instances,

regardless of the outcome.

Complex ethical, legal, and health policy issues

affecting children further complicate the timely provision

of palliative care.

45

For example, ethicists

increasingly support the concept that adolescents

have the ability to participate in medical decision

making. Indeed, selected legal decisions about specific

cases have supported this viewpoint. However,

legislative statutes often do not address treatment

decisions or refusals of treatment by adolescents.

46

In some states, parents’ wishes regarding having a

do-not-resuscitate order for their child in the community

may not be legally recognized,

40

despite the

fact that ethicists hold that parents are best suited

to make decisions in the interest of their children.

The primary health care team therefore needs to advocate

for the wishes of the child and family in the

context of local and state law.

Legal decisions have further encumbered decision

making for pediatric health care providers,

particularly for those caring for infants. The “Baby

Doe” regulations, issued in the mid-1980s to compel

the treatment of potentially handicapped infants,

were based on the case of an infant with

Down’s syndrome and tracheoesophageal fistula

whose parents refused to provide consent for surgery

to repair the fistula.

47

Although ultimately overturned

by the Supreme Court, these regulations had

a substantial impact and steered medical professionals

toward the continued use of life-sustaining

techniques when these might otherwise have

been withdrawn.

4

Furthermore, amendments to the

Child Abuse and Protection Act in 1984

48

broadened

the scope of what is considered child abuse by

labeling the withholding of medically indicated

treatment for an infant with a life-threatening condition

as a component of medical neglect. Resulting

regulations stipulated that handicapped infants

must always receive life-sustaining treatment except

in cases of irreversible coma or treatments that

would be inhumane or futile or would prolong the

dying process.

4

Although the U.S. government has

yet to intervene on behalf of an allegedly medically

neglected infant, these court decisions have made

neonatologists apprehensive about withdrawing or

withholding life-sustaining therapies for dying infants.

49

Many patients — adult and pediatric — who require

palliative care services do not meet eligibility

criteria for community-based hospice services. The

Medicare Hospice Benefit, created by Congress in

1982, provides a per diem reimbursement for care

of patients determined to have no longer than six

months left to live and for whom the goal of care is

palliative rather than curative.

50

Most hospice care

is provided in the home, yet the majority of infants

and children die in hospitals.

51

Children under 17

years of age make up only 0.4 percent of all hospice

admissions.

52

Thus, few hospice providers admit a

sufficient number of children to achieve or maintain

expertise in pediatric care.

3,4,9,53

Furthermore,

children with complex medical conditions

54

may

have health care needs, such as a requirement for

parenteral nutrition, transfusion, assisted ventilation,

or in-home “shift” or “block” nursing, that are

not reimbursable under existing systems of hospice

insurance.

Fragmented care adversely affects children with

complex medical conditions. For example, a child

with severe neurologic deficits who has stridor and

reactive airway disease, spasticity, a feeding tube,

scoliosis, and seizures may be served by a primary

care provider, orthopedic surgeon, pulmonologist,

otolaryngologist, gastroenterologist, nutritionist,

neurologist, multiple physical and occupational

therapists and physical medicine and rehabilitation

specialists, a provider of durable medical equipment,

a home-care company, a tutor, and representatives

from a faith-based community. Facilitating

and coordinating care among these many providers

are daunting and underfinanced tasks in pediatric

palliative care.

The assessment and management of symptoms

and suffering in children are difficult.

55,56

Few reliable,

valid, and developmentally appropriate methods

are available for measuring the suffering and

quality of life of children with life-threatening illness,

and few researchers and research dollars are

devoted to improving the state of symptom control

in children. In a retrospective, single-institution

study of the parents of children who died of cancer,

Wolfe et al. noted that most symptoms were reported

more frequently by parents than by physicians,

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of

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the majority of children suffered “a lot” or “a great

deal,” and the treatment of symptoms was often ineffective,

13

findings indicating a scope of distressing

symptoms similar to those seen in adult patients

with cancer.

57

Substantial research strides have been made in

adult palliative medicine in the past five years, creating

measures with which to gauge the quality and

effect of palliative care services. These include an

understanding of the definitions of a “good death”

and of the quality of life from the perspective of adult

patients and an identification of treatment preferences

and factors important in advance care planning.

Knowledge has also been gained about the

beliefs, attitudes, and feelings of professional staff

members; the burdens that patients with chronic

illnesses place on caregivers; and the assessment

and management of pain and symptoms.

58-69

Similar

studies have been rare among children with

life-threatening illnesses,

70,71

and a “good death”

in a child remains undefined.

72

Multicenter studies

would be required to determine the best practices,

to establish appropriate outcome measures, to assess

the current management of emotional and

spiritual distress, and to learn whether current approaches

to and therapies for bereaved parents and

children are effective.

73,74

A wealth of new information is available for the generalist

and the specialist with an interest in pediatric

palliative care (see Supplementary Appendix 1).

In the past 10 years a range of palliative care clinical

programs has been developed in hospitals, hospices,

home care programs, and long-term care facilities

to help fill the gap between traditional hospital

care and community-based hospice care. Although

it represents an ideal, the presence of a designated

pediatric palliative care team in all health care facilities

that serve life-threatened children is currently

a luxury. New efforts are under way to expand pediatric

palliative care services, led by the Palliative

Care Leadership Centers/Center to Advance Palliative

Care.

75

We are indebted to Steven Weisman, M.D., Gary Walco, Ph.D.,

and Christopher Sobczak, M.D., for insightful review of the manuscript;

and to the Interdisciplinary Palliative Care Team of the Children’s

Hospital of Wisconsin for help in developing the concept for

this article.

Drs. Himelstein, Hilden, and Weissman are Faculty Scholars of

the Project on Death in America.

conclusions

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1.2.3.4.5.6.7.8.

1.2. Sign in

.SETIAP tahun di Amerika Serikat , sekitar 50.000 anak meninggaldan 500.000anak mengatasi kondisi yang mengancam jiwa . seluruh dunia iniangka dalam jutaan .1,2Anak-anak tersebut dan keluarga mereka memerlukan komprehensif,penyayang , dan perawatan paliatif sesuai dengan tahapan perkembangan .Perawatan paliatif adalah filosofi perawatan yang berevolusi dari filosofi rumah sakit untukmemenuhi kesenjangan dalam perawatan untuk sakit parah dan sekarat pasien . Tujuan pediatrik paliatifperawatan terbaik harus bersinggungan dengan tujuan menyembuhkan dan menyembuhkan , dan pendekatan ini harusdilembagakan saat diagnosis , intervensi , dan pengobatan tidak terbatas pada penyakitproses , melainkan menjadi instrumen untuk meningkatkan kualitas hidup , mempertahankanmartabat , dan memperbaiki penderitaan anak-anak sakit parah atau sekarat dengan cara yangsesuai untuk pendidikan , budaya , dan masyarakat .3-7Seperti perawatan rumah sakit , paliatifperawatan mengakui bahwa orang dari segala usia mati dan perhatian bahwa perawat ' harusdifokuskan pada menghilangkan rasa sakit pasien dan penderitaan . Selanjutnya , perawatan paliatif menganggap

pasien dan keluarga sebagai entitas yang unik yang anggotanya memerlukan perawatan baik sebelumdan setelah kematian . Perawatan paliatif mengakui peran dokter sebagai salah satu anggota kuncidari tim interdisipliner membantu pasien dan keluarga dengan fisik yang segudang ,kebutuhan sosial , psikologis , dan spiritual yang datang ke dalam bermain ketika seorang anak memiliki lifethreateningpenyakit.Perawatan paliatif cocok untuk anak-anak dengan berbagai kondisi , bahkan ketikaobat tetap menjadi kemungkinan yang berbeda ( Tabel 1 ) .8The American Academy of Pediatrics5memilikikonsep didukung perawatan paliatif , yang menyatakan bahwa " komponen perawatan paliatif adalahditawarkan di diagnosis dan berlanjut sepanjang perjalanan penyakit , apakah hasilnyaberakhir pada obat atau kematian . " Perawatan paliatif harus dapat diakses dalam pengaturan apapun , termasukrumah, rumah sakit , dan sekolah .Penyedia layanan kesehatan primer harus diajarkan untuk mengenali kebutuhan anak untuk perawatan paliatif , untukmenilai kebutuhan emosional dan spiritual anak dan keluarga , untuk memudahkan perawatan mukaperencanaan , untuk menilai dan mengelola rasa sakit dan gejala anak , untuk memberikan berkabungpeduli untuk keluarga anak , dan untuk mengenali indikasi untuk rujukan ke dokter spesialis .Essentials dari penilaian dan perencanaan perawatan paliatif pediatrik disajikan dalamGambar 1 .3-7,9-12Generalis dan spesialis sama-sama dapat dan harus memberikan perawatan paliatifbila diperlukan . Minimal tim harus mencakup dokter utama terlatih ,koordinator perawatan , dan dalam beberapa kasus , spesialis berkabung . Selain itu, dukunganharus tersedia dari spesialis seperti psikolog anak dan spesialis - kehidupan anakdalam rangka untuk membantu dengan masalah psikososial kompleks yang dihadapi oleh anak-anak dengan lifethreateningkondisi dan keluarga mereka .Setelah kebutuhan untuk perawatan paliatif diidentifikasi , penyedia utama memiliki peran sentral dalam memprakarsaidiskusi kritis tentang lintasan penyakit dan tentang pesawat perawatan mukapendekatan dan keberhasilan perawatan paliatif pediatrikHak Cipta © 2004 Massachusetts Medical Society . All rights reserved.Download dari www.nejm.org di LOYOLA UNIVERSITY pada tanggal 15 April 2010.n engl j med350 ; 17www.nejm.org April22 , 2004kemajuan medis1753

ning . Karena tim perawatan paliatif mungkin tidak segeratersedia, profesional perawatan kesehatan harusmengantisipasi dan mengatasi rasa sakit dan gejala manajemensementara mengumpulkan tim dukungan untuk mengatasi semuakeprihatinan fisik, psikologis , dan spiritualdari anak dan keluarga.penilaian dan manajemenrasa sakit dan gejalaManajemen yang tepat waktu dan terampil rasa sakit dan gejalaharus menjadi landasan setiap dokterperawatan untuk anak-anak menghadapi kondisi yang mengancam jiwa .Selain itu, dokter dapat memberikan sangat dibutuhkandukungan dengan mendidik keluarga tentang apa yang diharapkansebagai anak-anak bergerak melalui lintasan penyakit.Profesional perawatan kesehatan menghadiri untuk anak-anakkondisi yang dihadapi mengancam jiwa harusbersedia dan mampu untuk membahas kemungkinan kematian ,potensi penderitaan fisik dan emosional ,dan strategi untuk pencegahan dan pengobatanterus terang .Meskipun pentingnya menyediakan tepat waktumanajemen rasa sakit dan gejala diakui dengan baik,perawatan tersebut sering kurang .13dokter umumyang ingin mengarahkan perawatan anak-anak dengankondisi yang mengancam jiwa atau membatasi hidup harusmenjadi akrab dengan farmakologis dipilih danpengobatan nonpharmacologic untuk nyeri , dyspnea ,mual dan muntah , sialorrhea , dan kejang (Tabel2 ) .12,14Penyedia layanan kesehatan harus berkonsultasidengan perawatan paliatif pediatrik dan spesialis rasa sakit ataudirektur rumah sakit lokal dengan keahlian pediatrik .kebutuhan emosional dan spiritualAspek unik dari perawatan paliatif pediatrik adalah bahwaPengalaman kompleks penyakit yang mengancam jiwa terjadi ,oleh sifat dari anak sebagai pasien , dalamkonteks pertumbuhan dan perkembangan - fisik,emosional, sosial, psikologis , dan spiritual .15Dengan demikian , staf yang bekerja dengan anak-anak yang menghadapipenyakit yang mengancam jiwa dan keluarga mereka harus memilikipengetahuan dasar dan keahlian pada anakpengembangan dan sistem keluarga .Komunikasi dengan anak-anak membutuhkan keakrabandengan perkembangan normal mereka emosional dan spiritual( Tabel 3 ) .6,16-21

Anggota staf yang efektifsecara emosional tersedia, jujur , dan terbuka untuk anak-anakpertanyaan . Mereka mendorong umpan balik danpeluang untuk diskusi .19Dokter juga perluuntuk mendukung orang tua dan anggota keluarga lainnya danpengasuh . Bahkan sebagai pendekatan kematian anak , orang tuadan pengasuh harus didorong untuk mempertahankanrutin, kebiasaan disiplin sesuai dengan usia untukanak dan memberikan rutinitas yang konsisten dan akrab .Bekerja di mandat tingkat perkembangan anakpenggunaan tidak hanya komunikasi lisan, tetapijuga bahasa tubuh dan simbolik ( ekspresif )metode berinteraksi . Teknik yang umum digunakankomunikasi ekspresif dengan anak-anak termasukmenggambar , bermain dengan boneka binatang ,menulis cerita atau jurnal , bermain atau menulis musik ,dan menciptakan ritual . Memenuhi anak di rumahnya atautingkat nya pembangunan akan mendorong anak untukmengungkapkan harapan, mimpi , ketakutan , dan refleksi .22,23Bagaimana anak-anak memahami kematian tergantung pada merekatingkat perkembangan ( Tabel 4 ) . Pemahaman sepenuhnya matangkematian memerlukan mengintegrasikan prinsip-prinsipdari ireversibilitas , finalitas dan nonfunctionality ,universalitas , dan kausalitas . Selain itu, konsepkematian sering dipengaruhi oleh pribadi, budaya ,dan faktor pengalaman .16,18-21penelitian menunjukkanbahwa anak-anak memahami kematian sebagai keadaan berubahawal tiga tahun , universalitas sekitar limasampai enam tahun , dan kematian pribadi dengan delapan sampaisembilan tahun .24* Kematian prematur kemungkinan atau diharapkan dengan banyak kondisi ini .Tabel 1 . Kondisi yang tepat untuk Perawatan paliatif Pediatric . *Kondisi yang pengobatan kuratif adalah mungkin tapi mungkin gagalKanker stadium lanjut atau progresif atau kanker dengan prognosis burukPenyakit jantung bawaan atau diperoleh kompleks dan beratKondisi yang memerlukan pengobatan jangka panjang intensif ditujukan untuk mempertahankankualitas hidupInfeksi virus human immunodeficiencycystic fibrosisGangguan pencernaan parah atau malformasi seperti gastroschisisParah epidermolisis bulosaimunodefisiensi parahGagal ginjal dalam kasus di mana dialisis , transplantasi , atau keduanya tidak tersedia

atau diindikasikanKronis atau parah kegagalan pernapasanpenyakit otot menyusunKondisi progresif di mana pengobatan paliatif eksklusifsetelah diagnosisGangguan metabolisme ProgresifKelainan kromosom tertentu seperti trisomi 13 atau trisomi 18Bentuk parah osteogenesis imperfectaKondisi yang melibatkan berat , cacat nonprogressive , menyebabkan kerentanan ekstrimkomplikasi kesehatanCerebral palsy berat dengan infeksi berulang atau sulit-untuk - kontrolgejalaekstrim prematuritasGejala sisa neurologis parah penyakit menularCedera otak hipoksia atau anoxicHoloprosencephaly atau malformasi otak parah lainnyaHak Cipta © 2004 Massachusetts Medical Society . All rights reserved.Download dari www.nejm.org di LOYOLA UNIVERSITY pada tanggal 15 April 2010.n engl j med350 ; 17www.nejm.org April22,2004itunew england jurnaldariobat1754Gambar 1 . Elemen penting dalam Pendekatan untuk Pediatric Palliative Care .Kekhawatiran psikososialKekhawatiran praktisKekhawatiran spiritualPerawatan muka PerencanaanMembuat dan menyebarkan farmakologis dan nonpharmacologicrencana perawatanTempatkan obat-obatan darurat di rumahLihat anak untuk rasa sakit dan spesialis perawatan paliatif yang diperlukanAlamat anak dan ketakutan keluarga dan kekhawatiran jujurYakinkan anak dan keluarga mereka tidak akan ditinggalkanAlamat keprihatinan saudara kandung anak dan keluargaSesuaikan rencana perawatan untuk berbaur dengan anak dan keluarga yang mengatasidan gaya komunikasiBerkomunikasi dengan anak dalam sesuai dengan tahapan perkembanganmodeJelaskan konsep kematian dan tahap perkembanganpemahaman kematianMemodifikasi rencana perawatan dan pilihan atas dasar anak sebelumnyapengalamanPertimbangkan merujuk anak dan keluarga untuk kesehatan mental

profesional sesuai kebutuhanMembuat rencana tindak lanjut dari keluarga setelah kematian anakYakinkan anggota keluarga mereka tidak akan ditinggalkanPertimbangkan merujuk anak untuk spiritual yang sesuai secara budayapenyedia layananTawarkan untuk membantu menjelaskan penyakit anak ke operator spiritual ,dengan izin keluargaLuangkan waktu untuk anak dan keluarga untuk merefleksikan makna kehidupandan tujuanSertakan pengambil keputusan kunciMengkomunikasikan informasi pengambilan keputusan untuk seluruh timMemberikan informasi yang diperlukan untuk membuat subjekdimengertiMembangun konsensus mengenai penyakit lintasanMengidentifikasi efek sakit pada kapasitas fungsional anakdan kualitas hidupMengidentifikasi kemungkinan waktu sampai kematianMenetapkan apakah tujuan bersifat kuratif , pasti, atauterutama kenyamananBerkomunikasi gol untuk tim kesehatanBuat atau menyebarkan rencana medis (termasuk do- notresuscitateperintah yang diperlukan ) , mencerminkan pilihan untukintervensi spesifik yang berhubungan dengan perubahan status kesehatanMemberikan bimbingan antisipasi mengenai fisikperubahan pada saat atau dekat kematian, siapa yang harus dihubungi , yangakan mengelola gejala anakMengidentifikasi koordinator perawatan dan rute kontak yangselalu tersediaMerekrut pegawai baru yang diperlukan untuk mencapai tujuan(seperti rumah sakit atau spesialis perawatan paliatif )Membuat informasi paket - of-perawatan yang tersedia untuk timYakinkan anak atau keluarga yang menyatakan tujuan perawatan dapatdicapai dalam lingkungan pilihanMembuat dan menyebarkan rencana lokasi kematian , kontakpada saat kematian , dan pernyataan kematianMembuat dan menyebarkan rencana perawatan untuk semua yang relevanlingkunganCobalah untuk mengunjungi situs perawatan seperti sekolah untuk memberikan pendidikandan dukungan , jika mungkin dalam kemitraan denganlembaga masyarakatPeralatan medis Orde seperti kursi roda , hisap ,toilet, atau tempat tidur rumah sakit untuk mengantisipasi kebutuhanTawarkan bantuan dari layanan sosial , keuangankonselor , atau dukungan lain tersedia dimasyarakatPraktek Sphere Luas AssessmentKekhawatiran fisikrencanaMengidentifikasi rasa sakit atau gejala lainMengidentifikasi anak dan ketakutan keluarga

dan kekhawatiranMengidentifikasi anak yang mengatasi dangaya komunikasiDiskusikan pengalaman sebelumnya dengankematian, sekarat , kehidupan traumatis lainnyaperistiwa , atau isu-isu khusus sepertipenyalahgunaan zat atau bunuh diriMenilai sumber daya untuk berkabungmendukungMelakukan penilaian spiritual( harapan ulasan anak , mimpi ,nilai-nilai , makna hidup, cara pandang perandoa dan ritual , keyakinanmengenai kematian)Mengidentifikasi pengambil keputusanMenanyakan tentang beban keuangantempat penyakit anak pada keluargaAlamat anak yang saat ini danstatus fungsional masa depanMenjadi akrab dengan rumah anakatau lingkungan sekolahMenetapkan anak dan keluargapreferensi untuk lokasi perawatanMembangun sarana komunikasidan koordinasi dengantim perawatan kesehatanPikirkan tentang isu-isu mengenai perawatanatau masalah mendekati akhir kehidupanDiskusikan penyakit lintasanMengidentifikasi tujuan perawatanHak Cipta © 2004 Massachusetts Medical Society . All rights reserved.Download dari www.nejm.org di LOYOLA UNIVERSITY pada tanggal 15 April 2010.n engl j med350 ; 17www.nejm.org April22 , 2004kemajuan medis1755Spiritualitas di masa kecil juga perkembangandidefinisikan25,26( Tabel 3 ) . Meskipun spiritualitas dan religiusitasmungkin erat tumpang tindih konstruksiuntuk orang dewasa , anak-anak , terutama anak-anak muda ,mungkin mengalami spiritualitas tanpa agama pribadikeyakinan, nilai , dan praktik . Sebaliknya , spiritualitaslebih terlibat dalam pendekatan anak untukmemahami kehidupan . Keprihatinan spiritual umum termasukcinta tanpa syarat , pengampunan , harapan , keselamatandan keamanan , dan warisan ( anak-anak , seperti orang dewasa, ingin

untuk mengetahui bahwa kehidupan mereka telah membuat perbedaan , tidakhanya melalui prestasi , tetapi juga dengan menyentuhlain-lain) . Anak-anak juga khawatir tentang kesepian( pemisahan dari elemen pentingdunia mereka , seperti orang tua, saudara , sekolah , danhewan peliharaan ) dan hilangnya keutuhan ( karena tidak mampu melakukanapa yang mereka ingin lakukan ) .26Pusat penilaian spiritual pada pemahamanhal-hal yang penting bagi anak , sertamakna kehidupan anak untuk kedua anak dannya keluarga dan harapan dan impian anakuntuk masa depan , realistis atau tidak dalam konteks penyakit .Hubungan Transenden ada di antara bayidan anak-anak yang sangat muda dan orang tua mereka dansaudara - sebagaimana dicontohkan oleh hubungan antarabayi dan ibu menyusui . Sebagai anak-anak mengembangkan ,hal transenden seperti hubungandengan Tuhan atau kekuatan yang lebih tinggi lainnya dapat menjadi penting .25Untuk mendorong pertumbuhan rohani anak , dokterdapat menyadari dan menghormati cara spiritualitasperubahan dengan usia ; memberikan kesempatan untuk sakitanak untuk berpartisipasi dalam perayaan keagamaan padatingkat yang sesuai dengan usia , mendukung pertumbuhan dan pemeliharaandari hubungan saling percaya , aman , dan penuh kasih ;memberikan dukungan di saat krisis dan putus asa , danmemberikan waktu untuk refleksi dan pertanyaan sebagai bagian dariperkembangan spiritual normal anak . tambahanmetode penilaian spiritual dan manajementelah digariskan di tempat lain.25,26perawatan berkabungProses penempelan orang tua-anak dimulaisaat anak lahir , jika tidak sebelumnya .27,28kerugianseorang anak merupakan salah satu peristiwa paling menegangkan mungkin,menghasilkan krisis makna di mana orang tuamencari kognitif penguasaan dan tujuan baru .29Kesedihan adalah proses seumur hidup , orang tua biasanyapernah sepenuhnya " melupakan " hilangnya anak melainkanbelajar untuk menyesuaikan dan mengintegrasikan kerugian ke merekahidup . Kembalinya fungsi sehari-hari, derivasikenikmatan dari kehidupan , dan pembentukan hubungan barusemua tanda-tanda penyembuhan dari kesedihan.Orang tua yang kehilangan anak beresiko tinggi untuk rumitreaksi kesedihan dan mungkin pada peningkatan risikokematian dari kedua penyebab alami dan tidak wajar .

30Reaksi kesedihan lebih rumit menyimpang dari yang diharapkanuntuk masyarakat tertentu dan budaya .31reaksi initermasuk kesedihan absen , kesedihan tertunda , dan berkepanjanganatau duka yang tidak terselesaikan .32Kesedihan Absen mengacu pada penghambatanekspresi khas kesedihan atau penolakankehilangan atau perasaan yang terkait . Kesedihan Tertunda terjadiketika ada banyak waktu antara rugidan timbulnya reaksi kesedihan , dari minggu ketahun . Kesedihan berkepanjangan dikaitkan dengan gigihdepresi , keasyikan dengan kerugian, overidentificationdengan dan kerinduan untuk almarhum, dan sosialpenghambatan yang tidak berubah dari waktu ke waktu . yg menyedihkan karena kematianorang tua tampaknya berada pada risiko terbesar untuk berkepanjangankesedihan.33Penelitian terbaru , bagaimanapun, menunjukkan bahwaperbedaan tingkat disfungsi psikososial antarakesedihan berkepanjangan , diklasifikasikan sebagai patologis , dankesedihan normal pada orang tua berduka mungkin halus .32Anak-anak juga berduka . Dalam pengaturan yang mengancam jiwaKondisi , anak-anak mungkin berduka hilangnya fungsi ,interaksi , dan partisipasi dalam perkembangankegiatan yang sesuai hidup sehari-hari seperti bermaindan sekolah . Anak-anak mendekati akhir kehidupan mungkinberduka kematian yang akan datang dan menderita dengan keprihatinantentang bagaimana korban akan mengatasinya. Sayangnya , mitosberlimpah mengenai anak dan kapasitas mereka untukberduka ( Tabel 5 ) . Saudara juga mungkin berisiko untuk* SL menunjukkan sublingual , PR per rektum , dan IV intravena .† Bayi berusia kurang dari enam bulan harus menerima sepertiga sampai setengahdosis ini .‡ Regimen untuk bayi disediakan di Taketomo et al .14Tabel 2 . Obat Digunakan untuk Gejala Umum dalam Pediatric PaliatifPerawatan . *Indikasi Obat rejimen awalNyeri atau dyspnea Morfin 0,3 mg / kg berat badan secara oral ,SL , atau PR setiap 3-4 jam †agitasi Lorazepamhaloperidol0,05 mg / kg secara oral , SL , atau PR setiap4-6 jam0,01-0,02 mg / kg secara oral , SL , atau PRsetiap 8-12 jam

Pruritus Diphenhydramine 0,5-1,0 mg / kg secara oral setiap 6-8 jamMual dan muntah prochlorperazineondansetron0,1-0,15 mg / kg secara oral atau PR setiap6-8 jam0,15 mg / kg secara oral atau IV setiap6-8 jamKejang Diazepam 0,3-0,5 mg / kg setiap 2-4 jam PRSekresi hyoscyamine ‡ 0,0625-0,125 mg oral atau SL setiap4 jam untuk anak-anak 2-12 tahun0,125-0,25 mg oral atau SL setiap4 jam untuk anak-anak > 12 tahunHak Cipta © 2004 Massachusetts Medical Society . All rights reserved.Download dari www.nejm.org di LOYOLA UNIVERSITY pada tanggal 15 April 2010.n engl j med350 ; 17www.nejm.org April22,2004itunew england jurnaldariobat1756versi kesedihan lebih rumit .34-39perhatian khususharus diberikan tidak hanya untuk saudara kandung , tetapi juga untuk teman sekelasdan rekan-rekan di masyarakat , karena anakkematian bahkan mempengaruhi orang-orang di luar lingkaran yang jelaskeluarga dan teman-teman . Dukacita adalah sumber dayatercantum dalam Lampiran Tambahan 1 (tersedia denganteks lengkap artikel ini di www.nejm.org ).perencanaan perawatan mukaPerencanaan perawatan muka adalah proses membantu pasiendan keluarga membuat dikenal keinginan mereka tentangapa yang harus dilakukan dalam kasus serius atau yang mengancam jiwamasalah . Mereka yang bertanggung jawab untuk perencanaan perawatan mukaharus menjadi akrab dengan relevan lokal, negara bagian ,dan hukum dan praktek , seperti yang mengenai federal yanglakukan- tidak resusitasi perintah dan standar untuk penggantimembuat keputusan untuk anak-anak atau orang dewasa yangtidak mampu membuat keputusan medis .40Perencanaan perawatan muka adalah proses empat langkah .Pertama , para pengambil keputusan diidentifikasi dan termasukdalam proses. Kedua , pasien atau keluargapemahaman tentang penyakit dan prognosis ditentukan

dan kematian yang akan datang dijelaskan dalam caradi mana anak dan keluarga bisa mengerti .Ketiga , atas dasar pemahaman mereka tentang penyakitdan prognosis , tujuan perawatan ditetapkan tentangsekarang dan masa depan intervensi - kuratif ,menentu , atau terutama berfokus pada penyediaan kenyamanan.Akhirnya keputusan , berbagi tentang saat ini danpenggunaan masa depan atau meninggalkan teknik mempertahankan hidupdan intervensi medis agresif, sepertisebagai ventilasi mekanis atau hidrasi buatan,Tabel 3 . Pengembangan Konsep Kematian dan Spiritualitas pada Anak .usiaKarakteristik rentangutamaKonsep Kematian Intervensi Pengembangan Spiritual0-2 thn Memiliki hubungan sensorik dan motorikdengan lingkunganMemiliki kemampuan bahasa terbatasMencapai objek permanenMungkin merasa bahwa ada sesuatu yangsalahTidak ada Iman mencerminkan kepercayaan dan harapanpada orang lainKebutuhan rasa harga diridan cintaMenyediakan maksimal fisikkenyamanan, orang yang akrabdan benda-benda transisi( mainan favorit ) , dan konsistensiGunakan komunikasi fisik sederhana> 2-6 thn Menggunakan magis dan animismepikirApakah egosentrisBerpikir adalah ireversibelTerlibat dalam bermain simbolikMengembangkan kemampuan bahasaPercaya kematian sementaradan reversibel , seperti tidurTidak personalisasi kematianPercaya kematian dapat disebabkanoleh pikiranIman adalah magis dan imajinatifPartisipasi dalam ritual menjadipentingButuh keberanianMinimalkan pemisahan dariorangtuaPersepsi yang benar tentang penyakitsebagai hukumanMengevaluasi rasa bersalah

dan meredakan jika adaGunakan bahasa yang tepat ( sekarat ,mati)> 6-12 thn Memiliki pengalaman konkret Pengembangan konsep dewasakematianMemahami bahwa kematian dapatbersifat pribadiTertarik dalam fisiologi dandetail kematianKeprihatinan iman yang benar dansalahDapat menerima interpretasi eksternalsebagai kebenaranMenghubungkan ritual dengan pribadiidentitasEvaluasi ketakutan anak darikeadaan tertinggaljujurMemberikan rincian konkret jika dimintaMendukung upaya anak untukmencapai kontrol danpenguasaanMenjaga akses ke rekan-rekanBiarkan anak untuk berpartisipasi dalampengambilan keputusan> 12-18 tahun Generality berpikirRealitas menjadi tujuanMampu refleksi diriCitra tubuh dan harga diriterpentingMenggali penjelasan nonfisikkematianMulai menerima interpretasi internal yangsebagai kebenaranEvolusi hubungan denganTuhan atau kekuatan yang lebih tinggiPencarian makna , tujuan,berharap , dan nilaikehidupanMemperkuat anak diriBiarkan anak untuk mengekspresikan kuatperasaanMemungkinkan privasi anakMempromosikan kemandirian anakMempromosikan akses ke rekan-rekanjujurBiarkan anak untuk berpartisipasi dalampengambilan keputusanHak Cipta © 2004 Massachusetts Medical Society . All rights reserved.Download dari www.nejm.org di LOYOLA UNIVERSITY pada tanggal 15 April 2010.

n engl j med350 ; 17www.nejm.org April22 , 2004kemajuan medis1757dibuat . Sebagai aturan umum , keputusan yang dibuat oleh pasiendan keluarganya , bahkan jika mereka mencerminkan keyakinandan nilai-nilai yang berbeda dari primertim perawatan kesehatan , harus dihormati . Jika keputusan initampaknya tidak cocok dengan pemahaman yang didugapenyakit atau tujuan perawatan , atau jika pasienatau keluarganya tidak memahami hasildari keputusan ini , terus review dan refleksidan diskusi pilihan dijamin .Seorang ahli etika mungkin perlu berkonsultasi jika konfliktidak dapat diselesaikan .Petunjuk muka - dokumen tertulis yang menggambarkanpasien atau keinginan keluarga tentang kesehatanperawatan , dirancang untuk menangkap elemen penting dari mukaperencanaan perawatan - yang penting dalam pengaturan ini .Ada dua jenis utama , " instruktif " arahandan " proxy" arahan . Sebuah direktif instruktif adalahditulis oleh seseorang dengan kapasitas pengambilan keputusandan menjadi efektif bila kapasitas yang hilang . contohtermasuk surat wasiat hidup , dokumen UU Kematian Alam,dan arahan medis. Sebuah direktif Proxymengotorisasi orang tertentu atau orang-orang untuk membuatkeputusan perawatan kesehatan bagi pasien dalam halpasien kehilangan kemampuan pengambilan keputusan . tahan lamakuasa untuk perawatan kesehatan adalah contohdari direktif proxy. Tahun 1990 Pasien Penentuan NasibUU disahkan oleh Kongres menetapkan panggung untukorang dewasa untuk mengekspresikan keinginan mereka tentang masa depankeputusan perawatan kesehatan secara tertulis .41Seperti dibahas di bawah ,petunjuk terlebih dahulu ditulis oleh anak-anak di bawahusia 18 tidak memiliki legal standing .Keberhasilan obat dalam meningkatkan tingkat kelangsungan hidupantara anak-anak dengan kanker , penyakit jantung bawaan ,dan prematur memiliki konsekuensi yang tidak diinginkanmenawarkan harapan palsu kepada orang tua bahwa kematianselalu dapat dihindari .4Dalam perbandingan dengan2,3 juta kematian orang dewasa setiap tahun di AmerikaAmerika , kematian dan penyakit yang mengancam jiwa pada anak-anakrelatif jarang . Gangguan yang mengarah kekematian anak-anak , dengan pengecualian masa kanak-kanak

kanker, mencakup berbagai kondisi yang kurang dikenal ,termasuk gangguan yang berhubungan dengan kehamilan pendek danberat badan lahir rendah , sindrom kematian bayi mendadak ,malformasi kongenital , deformasi , dan kromosomkelainan .2,42Untuk orang dewasa , khususnyaorang yang tua atau menderita panjang , melemahkanpenyakit, kematian sering dapat diterima , dan bahkanyang diinginkan , hasil43, Sebaliknya , kematian anak tetapemosional sulit , tidak wajar , dan tak terdugauntuk keluarga dan penyedia layanan kesehatan sama.Teknologi juga telah berkontribusi pada jangka panjangkelangsungan hidup dari kelompok baru anak-anak dengan gangguan langkadan kondisi medis yang kompleks44,45yang dalamera sebelumnya akan mati sebelumnya . Banyak anak-anak tersebutcenderung berulang mengancam jiwa atau lifelimitingkomplikasi . Ramalan untuk anak-anakdengan masalah yang kompleks tersebut sangatmenantang , sehingga sulit bagi dokter untuk menentukanapakah atau ketika anak-anak tersebut mungkinsekarat .hambatan untuk perawatanTabel 4 . Unsur Lengkap Memahami Pembangunan of Death .Konsep Kematianpertanyaan sugestifKesepahaman lengkapImplikasi lengkapMemahamiIreversibilitas ( hal mati tidak akan hiduplagi)Berapa lama Anda tinggal mati?Kapan saya (pet mati) datang kembali ?Dapatkah saya " un - mati" seseorang?Bisakah Anda mendapatkan hidup lagi bila Andamati?Mencegah detasemen pribadidasi, langkah pertama dalam berkabungFinalitas atau nonfunctionality( semua kehidupan terdefinisi fungsi berakhir pada kematian)Apa yang Anda lakukan ketika Anda mati?Dapatkah Anda lihat ketika Anda mati ?Bagaimana Anda makan bawah tanah ?Apakah orang tewas menjadi sedih ?Keasyikan dengan potensipenderitaan fisik orang mati

orangUniversalitas ( semua makhluk hidup mati ) Apakah semua orang mati?Apakah anak-anak mati?Apakah saya harus mati ?Ketika saya akan mati ?Mungkin memandang kematian sebagai hukuman atastindakan atau pikiran anak atauorang yang meninggalDapat menyebabkan rasa bersalah dan maluKausalitas ( pemahaman realistis daripenyebab kematian )Mengapa orang mati?Apakah orang-orang mati karena mereka buruk ?Mengapa saya ( pet ) mati?Dapatkah saya berharap seseorang mati?Dapat menyebabkan rasa bersalah yang berlebihanHak Cipta © 2004 Massachusetts Medical Society . All rights reserved.Download dari www.nejm.org di LOYOLA UNIVERSITY pada tanggal 15 April 2010.n engl j med350 ; 17www.nejm.org April22,2004itunew england jurnaldariobat1758Dalam pengaturan kemajuan teknis yang luar biasa ,keluarga - dan beberapa dokter - dapat melihat kematianlebih sebagai kecelakaan terapi selain sebagai alamimemproses akibat penyakit . pengakuan bahwakematian tidak bisa dihindari sering tertinggal realitaskondisi medis , mengarah ke pendekatan pengobatanyang tidak tepat agresif . Sebagai contoh,anak dengan beberapa kambuh leukemia dapat ditawarkantransplantasi sumsum tulang ketiga atau keempatmencoba untuk menginduksi remisi jangka pendek ataumempertahankan beberapa kualitas hidup , tetapi dengan tidak ada harapanmenyembuhkan . Dalam kondisi seperti ini , pelayanan perawatan paliatif pentingmungkin ditolak oleh orang tua , yang akan terusuntuk melihat prosedur sebagai kuratif.Atau , penyedia layanan kesehatan mungkin menganggapbahwa seorang anak sedang sekarat ketika, dalam kenyataannya , kemungkinanTabel 5 . Mitos dan Realitas Anak Duka .Topik Mitos RealitasApakah anak-anak dan remajabersedih?Anak-anak muda jangan berduka . Semua anak berduka .

Anak-anak jangan berduka sebanyak orang dewasa . Anak-anak dan orang dewasa mengekspresikan kesedihan berbeda tapi intens .Anak-anak beruntung karena mereka terlalu muda untuk memahami .Anak-anak rentan dalam mereka berduka .Anak-anak harus dilindungi dari rasa sakit dan penderitaanuntuk mempertahankan bahwa mereka tidak bersalah .Anak-anak tidak dapat dilindungi dari kematian dalam bermain,media, atau pengalaman hidup .Anak-anak bisa mengatasi kesedihan dengan cepat . Kesedihan anak-anak tidak memiliki batas waktu .Anak-anak dan remaja memahami , pengalaman, danmengekspresikan kesedihan identik .Anak-anak dan remaja perkembangan yang berbeda .Haruskah anak-anak dan remajadihadapkan padatercinta yang sedang sekarat ?Anak-anak akan bingung dengan hidup bersama orang yang dicintaiyang sekarat .Anak-anak perlu memahami dan memahami merekapengalaman dalam rangka untuk membantu mereka belajar bahwa matidan kematian adalah bagian dari kehidupan .Anak-anak akan trauma dengan pertemuan terakhir merekadengan orang yang sekarat .Anak-anak akan menghargai telah memiliki kesempatan untukmenghabiskan waktu dengan orang yang dicintai selama orang ituhari terakhir dan minggu.Happy times bahwa anak-anak berbagi dengan mereka cintaiakan dibayangi oleh pengalaman menontonorang yang mati .Anak-anak dapat mempelajari nilai-nilai melalui partisipasi dalamkematian orang yang dicintai .Anak-anak harus dilindungi dari melihat orang yang dicintaimati.Anak-anak kemudian mungkin membenci pengecualian mereka ; keterlibatan merekaakan membantu dengan berduka .Haruskah anak-anak mengambil bagian dalampemakaman atau postdeath lainnyaritual ?Anak-anak seharusnya tidak diizinkan untuk mengambil bagian dalam sepertiritual .Anak-anak bisa mendapatkan keuntungan dengan cara yang bermakna dengan membantuuntuk merencanakan dan dengan menghadiri pemakaman , termasuk memungkinkanmereka kesempatan untuk pertanyaan dan belajardari reaksi emosional orang dewasa .Jika anak-anak diperbolehkan untuk berpartisipasi , partisipasi merekaharus dibatasi dan mereka harus dilindungidari melihat reaksi emosional yang kuat .Anak-anak bisa mendapatkan keuntungan dari dukungan orang lain untuk membantumengatasi perasaan terisolasi .Dewasa lebih tahu apakah atau tidak untuk memungkinkan seorang anak untuk

berpartisipasi dalam ritual tersebut setelah kematian .Kesulitan timbul baik dari memaksa anak-anak untuk berpartisipasibertentangan dengan keinginan mereka atau dari orang-orang termasukyang ingin dimasukkan .Sekarat anak sadarsituasi mereka , dan bagaimanamereka bisa membantu ?Sekarat anak < 10 tahun tidak menyadari bahwa merekasekarat .Sekarat anak tahu bahwa mereka sedang sekarat , penolakan dewasa tidak efektifdalam menghadapi perceptiveness emosional anak-anak .Sekarat anak-anak tidak mengalami kecemasan karena merekatidak menyadari bahwa mereka sedang sekarat .Anak yang meninggal mengalami rasa takut , kesepian , dan kecemasan .Sekarat anak tidak memiliki masalah untuk diri sendiri ataulain .Sekarat anak khawatir , mungkin mencoba untuk menempatkan urusan mereka ,mungkin berusaha untuk melindungi orang tua mereka , dan takut menjaditerlupakan .Pertanyaan sekarat anak-anak tidak harus dijawab . Sekarat anak-anak membutuhkan jawaban yang jujur dan tanpa syaratmencintai dan mendukung .Hak Cipta © 2004 Massachusetts Medical Society . All rights reserved.Download dari www.nejm.org di LOYOLA UNIVERSITY pada tanggal 15 April 2010.n engl j med350 ; 17www.nejm.org April22 , 2004kemajuan medis1759pemulihan ke tingkat sebelumnya fungsi kemungkinan ,meskipun itu kualitas hidup tidak dapat dianggapakan cukup oleh penyedia . Misalnya, kesehatanpenyedia layanan mungkin mempertanyakan penggunaan intensifdukungan perawatan bagi seorang anak dalam vegetatif persistennegara dalam siapa antikonvulsan -induced pankreatitisberkembang . Dalam situasi yang kompleks , perawatan paliatiflayanan mungkin ditolak oleh dokter dan orang tuasama dan dianggap sama saja dengan " menyerah padaanak , "44meskipun perawatan paliatif pediatrikfilosofis berkomitmen untuk membantu dalam kasus tersebut ,apapun hasilnya .Etika, hukum , dan kesehatan isu-isu kebijakan yang kompleksmempengaruhi anak-anak memperumit penyediaan tepat waktuperawatan paliatif .45Sebagai contoh, ahli etikasemakin mendukung konsep bahwa remaja

memiliki kemampuan untuk berpartisipasi dalam pengambilan keputusan mediskeputusan. Memang , memilih keputusan hukum tentang spesifikkasus telah mendukung sudut pandang ini . Namun ,undang-undang legislatif sering tidak menangani pengobatankeputusan atau penolakan pengobatan oleh remaja .46Di beberapa negara , keinginan orangtua tentang memilikilakukan- tidak resusitasi agar anak mereka dalam masyarakatmungkin tidak diakui secara hukum ,40meskipunFakta bahwa ahli etika berpendapat bahwa orang tua yang paling cocokuntuk membuat keputusan demi kepentingan anak-anak mereka .Tim perawatan kesehatan primer karena itu perlu advokasiuntuk keinginan anak dan keluarga dikonteks hukum lokal dan negara .Keputusan hukum telah lebih lanjut dibebani keputusankeputusan untuk penyedia perawatan kesehatan anak ,terutama bagi mereka yang merawat bayi . The " BayiDoe " peraturan , dikeluarkan pada pertengahan 1980-an untuk memaksapengobatan bayi berpotensi cacat,didasarkan pada kasus bayi denganSindrom Down dan fistula trakeoorang tua yang menolak untuk memberikan persetujuan untuk operasiuntuk memperbaiki fistula .47Meskipun akhirnya terbalikoleh Mahkamah Agung , peraturan ini memilikidampak besar dan profesional medis dikemudikanterhadap penggunaan terus mempertahankan hidupteknik saat ini mungkin sebaliknya telahtelah ditarik .4Selanjutnya , amandemenPelanggaran Perlindungan Anak dan Undang-Undang tahun 198448diperluasruang lingkup apa yang dianggap pelecehan anak olehpelabelan pemotongan indikasi medispengobatan untuk bayi dengan kondisi yang mengancam jiwasebagai komponen kelalaian medis. Hasilperaturan menetapkan bahwa bayi cacatharus selalu menerima hidup pengobatan kecuali

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