Transcript Pediatric Palliative Care - Penn State Hershey Medical Center

Pediatric Palliative Care
Gary D. Ceneviva, MD
Penn State Children’s Hospital
Division of Pediatric Critical Care
Objectives

Define hospice, palliative, and end-of-life care
 Illustrate how principles of palliative care can be
integrated into the care of children
 Identify conditions appropriate for palliative care
 Describe unique features of pediatric palliative
care which differ from adult palliative care
Epidemiology
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Approximately 500,000 children cope
with life-threatening conditions annually
in the United States1
Over 50,000 children die annually in the
United States2
1. Himelstein BP et al. N Eng J Med 2004;350:1752
2. Hoyert DL et al. Pediatrics 2006; 117:168
Concepts
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Hospice
 Palliative Care
 End of Life Care
Hospice
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Describes a philosophy, program, or site of
care
 A philosophy of care which addresses the
physical, social, emotional, and spiritual
needs of children with life-threatening
conditions & their families from the time of
diagnosis, through bereavement, if cure is
not attained
Palliative Care

Comprehensive approach to care that
focuses on the treatment of physical,
emotional, social, and spiritual symptoms of
children with life-threatening conditions
and their families
 Can be provided concurrently with curative
or life-prolonging care
 Goal is to achieve the best quality of life for
a child and their families
End of Life Care

No precise definition
 Focuses on preparing for an anticipated
death and managing the end stage of a fatal
condition
A Comprehensive Model of
Palliative Care
Disease Modifying Therapy
(Curative, Restorative intent)
Life
Closure
Risk
Disease
Condition
Palliative Care
Death &
Bereavement
National Hospice Work Group; Adapted from work of the Canadian Palliative Care Association & Frank Ferris, MD
Conditions Appropriate for
Palliative Care

Conditions for which curative treatment is
possible but may fail
 Conditions requiring long-term treatment
aimed at maintaining the quality of life
 Progressive conditions in which treatment is
exclusively palliative after diagnosis
 Conditions involving severe, nonprogressive disability
Himelstein BP et al. N Engl J Med 2004;350:1752
Conditions Appropriate for
Palliative Care

Conditions for which curative treatment is
possible but may fail
– Advanced or progressive cancer
– Cancer with a poor prognosis
– Complex and severe congenital or acquired
heart disease
Himelstein BP et al. N Engl J Med 2004; 350:1752
Conditions Appropriate for
Palliative Care

Conditions requiring intensive long-term
treatment aimed at maintaining the quality
of life
–
–
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–
–
HIV or severe immunodeficiencies
Cystic Fibrosis
Severe gastrointestinal disorders
Muscular dystrophy
Chronic or severe respiratory failure
Himelstein BP et al. N Engl J Med 2004; 350:1752
Conditions Appropriate for
Palliative Care

Progressive conditions in which treatment is
exclusively palliative after diagnosis
– Metabolic disorders
– Chromosomal anomalies such as trisomy 13 or
18
– Severe forms of osteogenesis imperfecta
Himelstein BP et al. N Engl J Med 2004; 350:1752
Conditions Appropriate for
Palliative Care

Irreversible but non-progressive conditions
causing severe disability leading to susceptibility
to health complications and likelihood of
premature death
– Hypoxic Brain Injury
– Severe Cerebral Palsy with recurrent infection or
difficult to control symptoms
– Severe neurologic sequelae of infectious disease
– Holoprosencephaly or other severe brain malformations
Himelstein BP et al. N Engl J Med 2004; 350:1752
Distinctive Features of Pediatric
Palliative Care

The nature of life-threatening conditions & causes
of death in children and adolescents
 The uncertain prognosis of some life-threatening
conditions in childhood
 The nature of concerns and needs of dying infants,
children, & adolescents
 Distinctive ways in which infants, children, &
adolescents express their concerns and needs
Papadatou D et al. Education and Training Curriculum for Pediatric Palliative Care.
NHPCO 2003
Distinctive Features of Pediatric
Palliative Care
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Unique issues of decision making, as well as
ethical and legal issues, of self determination
The role of significant others in patient care
Populations and individuals affected by a death
Distinctive aspects of the nature and duration of
bereavement following death
Effect of the dying process and death of a child on
health care professionals and care providers
Papadatou D et al. Education and Training Curriculum for Pediatric Palliative Care.
NHPCO 2003
Distinctive Features of Pediatric
Palliative Care

The nature of life-threatening conditions &
causes of death in children and adolescents
– Life threatening conditions & causes of death
 Differ significantly from those typical of adult
populations
 Vary significantly within childhood and adolescence
according to age
Leading Causes of Infant
Death
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Congenital & Chromosomal Anomalies
Disorders related to SGA & LBW
SIDS
Maternal Complications of Pregnancy
Complications of Placenta, Cord & Membranes
Respiratory Distress
Accidents
Bacteria Sepsis
Diseases of the Circulatory System
Intrauterine Hypoxia & Birth Asphyxia
Martin JA et al. Pediatrics 2005; 115:619
Leading Causes of Childhood
Death (1- 19 years old)
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Accidents (unintentional injuries)
Assault (homicide)
Malignant Neoplasms
Intentional Self Harm (suicide)
Congenital & Chromosomal Anomalies
Diseases of Heart
Chronic Lower Respiratory Diseases
Influenza and Pneumonia
Septicemia
Cerebrovascular Diseases
Martin JA et al. Pediatrics 2005; 115:619
Epidemiology

1 in 5 Americans die using intensive care
services
 Nationally, this translates to approximately
540,000 Americans each year
Angus DC et al. Crit Care Med 2004: 32:638
Epidemiology
Feudtner C et al Pediatrics 2006; 117:e932
Angus DC et al. Crit Care Med 2004; 32:638
Mode of Death in the Pediatric
Intensive Care Unit
 The
most common mode of death in
the pediatric intensive care unit (PICU)
is the limitation or withdraw of life
sustaining therapy (LST)
Vernon DD et al. Crit Care Med 1993; 21:1798
Mink RB et al. Pediatrics 1992; 89:961
Distinctive Features of Pediatric
Palliative Care

The unusual features of some lifethreatening conditions in childhood
– Some diseases are very rare and have an
uncertain prognosis
Distinctive Features of Pediatric
Palliative Care
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The nature of concerns and needs of
seriously ill or dying infants, children, &
adolescents
– Infants, children, and adolescents have
distinctive concerns and needs based on their
developmental circumstances
Development of Death Concepts
Age
(yr)
Characteristics
Death Concepts
0-2
Has sensory & motor relationships with
environment; Limited language skills; Object
permanence; May sense something is wrong
None
2-6
Uses Magical & irreversible thinking;
Egocentric; Uses symbolic play, Developing
language skills
Believes death is temporary,
reversible, caused by
thoughts, and not
personalized
6-12
Concrete thoughts
Develops adult concepts of
death; Understands death can
be personal; Interested in
physiology & details of death
12-18 General thinking; Reality becomes objective;
Self-reflective; Body image & self esteem
important
Explores nonphysical
explanations
Distinctive Features of Pediatric
Palliative Care

Distinctive ways in which infants, children,
& adolescents express their concerns, needs,
beliefs, and feelings
Development of Death Concepts
Age
(yr)
Characteristics
Death Concepts
0-2
Has sensory & motor relationships with
environment; Limited language skills; Object
permanence; May sense something is wrong
None
2-6
Uses Magical & irreversible thinking;
Egocentric; Uses symbolic play, Developing
language skills
Believes death is temporary,
reversible, caused by
thoughts, and not
personalized
6-12
Concrete thoughts
Develops adult concepts of
death; Understands death can
be personal; Interested in
physiology & details of death
12-18 General thinking; Reality becomes objective;
Self-reflective; Body image & self esteem
important
Explores nonphysical
explanations
Distinctive Features of Pediatric
Palliative Care

Unique issues of decision making, as well
as ethical and legal issues, of self
determination
Ethical Principles of End of
Life Care
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Autonomy
– Self determination
– Accepts the likelihood that different persons may judge
benefits differently
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Beneficence
– Requires that only treatments that are in the child’s best
interest be pursued
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Nonmaleficence
– Requires that harm (physical, social, psychological,
spiritual) be avoided
Decision Making Capacity &
Competency
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Refers to the ability of a person to make
decisions
 Involves 3 essential elements
– The ability to understand & communicate
information relevant to a decision
– The ability to reason and deliberate concerning
a decision
– The ability to apply a set of values to decision
AAP Committee on Bioethics Pediatrics 1994; 93:532
Decision Making & Decision
Making Capacity
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Surrogates
– Usually the parents
– May include other family members or court appointed guardians
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Emancipated minor
– Definition varies from state to state
– Examples include: high school graduates, married, members of the
armed forces, pregnant or parents, or those living apart independently
from their parents
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Mature Minor
– Definition also varies among courts and legislatures
– > 14 years old assessed to have decision making capacity
AAP Committee on Bioethics Pediatrics 1994; 93:532
Standards for Decision
Making
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Substituted Judgment Standard
– Surrogates can make inferences about the preferences
of previously competent patients
– Can be used for children who are emancipated or
mature
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Best Interest Standard
– Serves as the basis for decisions for patients who never
achieve decision making capacity
– Usually used by surrogates of infants and young
children
Physicians’ Responsibilities &
the Decision Making Process
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Inform the patient & family when end of life discussions need to
occur because treatment no longer confers benefit & should be
forgone
 Provide the patient & family with adequate information about
therapeutic and diagnostic benefits
 Elicit questions and ascertain whether or not information and
advice is understood
 Ascertain the patient’s & family’s personal values and goals of
therapy
 Provide advice about which option to choose
 Document orders & progress notes in the medical record
AAP Committee on Bioethics Pediatrics 1994; 93:532
The Ideal Decision Making
Process
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Is shared between the caregiver team, patient, & family
Reaches a consensus on a medical plan that is in accordance
with the values and choices of the patient and family
Begins early during the ICU admission with a multidisciplinary
meeting which:
– Uses nontechnical language
– Allows ample time for questions
– Considers the patient’s & family’s personal values and goals of therapy
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Is one of negotiation
Is documented
Thompson BT et al Crit Care Med 2004; 32:1781
Parental Satisfaction with End
of Life Decision Making
“Physician recommendations, review of
options, and joint formulation of a plan help
parents gain a sense of control over their
situation.”
Sharman M et al Crit Care Med 2005; 6:513
Distinctive Features of Pediatric
Palliative Care
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The role and involvement of significant
others in patient care
– Typically parents assume a primary, active role
in meeting the needs of their child
Parental Stresses
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Ambiguity regarding the parental role
– Parents have limited access to their child
– Parents perceive not being in control (role as a
protector & provider is threatened)
The child’s clinical condition & relative
stability
 The child’s distress or pain
 Environmental factors
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Morrison AL Pediatr Crit Care Med 2004; 5:585
Meyer EC et al. Crit Care Med 2002; 30:226
Distinctive Features of Pediatric
Palliative Care
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Populations and individuals affected by a
death
– Many different generations (parents,
grandparents, siblings, peers) are affected
– Each individual may require a different form of
support especially when childhood death is
perceived to reverse or violate the natural order
of life events
Distinctive Features of Pediatric
Palliative Care
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Distinctive aspects of the nature and
duration of bereavement following death
– The mourning process of parents and sibling
presents unique characteristics, is long lasting,
and may have the potential to lead to
complications
Parental Grief
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Grieving is a gradual process passing through various
phases
 Early grief
– Characterized by disbelief, confusion, and unreality
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Subsequent phases
– Overlap
– Include periods of intense emotional release, physical and
mental exhaustion, restructuring of personal identity and
eventual beginning of life without the child
Meert KL et al. Pediatr Crit Care Med 2001; 2:324
Factors Influencing Parental
Grief
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The ability to cope with loss may be influenced
by the parents’
– Personality traits
– Cognitive skills
– Social supports
– Religious beliefs
– Physical health
Meert KL et al. Pediatr Crit Care Med 2001; 2:324
Parental Grief & Coping after
Death of a Child in the PICU
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Acute versus Chronic Disease
– Parents whose child died acutely had greater intensity of early and long-
term grief than those whose child died of chronic illness
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Quality of Care
– The emotional attitudes of staff influenced the intensity of early and
long-term grief
– The adequacy of information provided to parents predicted long-term
grief
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Parents’ Coping Ability
– Parents’ physical coping resources (physical well being) predicted the
intensity of early grief
– Parents’ cognitive coping resources (self worth) predicted the intensity
of long term grief
Meert KL et al. Pediatr Crit Care Med 2001; 2:324
Spiritual Needs of Bereaved
Parents of a Child in the PICU
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The most prominent parental spiritual need was
maintaining connection with their child before,
during, & after their death
 Parents maintained connection during the child’s
last hospitalization through death by physical
presence
 Parents maintained connection after death
through memories, mementos, memorials, and
altruistic acts
Meert KL et al. Pediatr Crit Care Med 2005; 6:420
Distinctive Features of Pediatric
Palliative Care
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Effect of the dying process and death of a
child on health care professionals and care
providers
– Challenges providers to develop a personal
philosophy about life and death in order to cope