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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1760
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
4
49
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