Download Pediatr Crit Care Med

End-of-Life Care in the Pediatric Intensive
Care Unit
Gary D. Ceneviva, MD
Division of Pediatric Critical Care
Caring
for
Kids.
Objectives
• Describe the patterns of childhood death
• Illustrate the integration of palliative care into the pediatric
intensive care unit
• Describe components of the ideal decision making process
• Identify key factors that impact decisions to forgo life sustaining
treatments (LST)
• Describe the process of forgoing LST
• Recognize the symptoms of dying children
• Identify factors influencing parental grief and subsequent coping
Caring
for
Kids.
Epidemiology
• Approximately 500,000 children cope with lifethreatening conditions annually in the United States1
• Over 50,000 infants and 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
Caring
for
Kids.
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
Bacterial Sepsis
Diseases of the Circulatory System
Intrauterine Hypoxia & Birth Asphyxia
Martin JA et al. Pediatrics 2005; 115:619
Caring
for
Kids.
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
Caring
for
Kids.
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
Caring
for
Kids.
Epidemiology
Feudtner C et al Pediatrics 2006; 117:e932
Caring
for
Kids.
Angus DC et al. Crit Care Med 2004; 32:638
Caring
for
Kids.
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
Caring
for
Kids.
Caring
for
Kids.
Palliative Care
• Comprehensive approach to care that focuses
on the treatment of physical, emotional, social,
and spiritual symptoms of children with lifethreatening 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
Caring
for
Kids.
End of Life Care
• No precise definition
• Focuses on preparing for an anticipated death
and managing the end stage of a fatal condition
Caring
for
Kids.
Contrasting Goals of Intensive Care and
Palliative Care
Intensive Care
• To fight death
• To cure
• To prolong life at all
costs
Caring
for
Kids.
Palliative Care
• To promote physical,
psychological, spiritual,
and social comfort
• To promote the
acceptance of death as
an outcome
A Comprehensive Model of
Palliative Care
Disease Modifying Therapy
(Curative, Restorative intent)
Life
Closure
Risk
Disease
Condition
Caring
for
Palliative Care
Death &
Bereavement
Kids.
National Hospice Work Group; Adapted from work of the Canadian Palliative Care Association & Frank Ferris, MD
Ethical Principles of End of Life Care
• Autonomy
– Self determination
– Accepts the likelihood that different persons may judge
benefits differently
• Beneficence
– Requires that only treatments that are in the child’s best
interest be pursued
• Nonmaleficence
– Requires that harm (physical, social, psychological,
spiritual) be avoided
Caring
for
Kids.
Decision Making Capacity &
Competency
• 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
Caring
for
Kids.
Decision Making & Decision Making
Capacity
• Surrogates
– Usually the parents
– May include other family members or court appointed guardians
• 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
• 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
Caring
for
Kids.
Standards for Decision Making
• Substituted Judgment Standard
– Surrogates can make inferences about the preferences of
previously competent patients
– Can be used for children who are emancipated or mature
• 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
Caring
for
Kids.
Physicians’ Responsibilities & the
Decision Making Process
• 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
• Documents orders & progress notes in the medical record
AAP Committee on Bioethics Pediatrics 1994; 93:532
Caring
for
Kids.
The Ideal Decision Making Process
• 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
• Is one of negotiation
• Is documented
Thompson BT et al Crit Care Med 2004; 32:1781
Caring
for
Kids.
Decision Making at the End of Life in the
PICU
• The attitudes and practices of end of life care vary
between and within countries & may be explained by
a country’s:
–
–
–
–
Cultural diversity
Religious diversity
Philosophical differences
Legal & Professional background
Devictor DJ et al. Pediatr Crit Care Med 2004; 5:211
Devictor DJ et al. Crit Care Med 2001; 29:1356
Burns JP et al. Crit Care Med 2001; 29:658
Caring
for
Kids.
Decision Making to Forgo LST in French PICUs
Devictor DJ et al. Crit Care Med 2001; 29:1356
Caring
for
Kids.
Decision Making in North America
Formal meeting called
Consensus obtained to forgo LST
In first meeting
After second meeting
Meeting Participants
Parents
Attending
Nurses
Residents
Social workers
Chaplains
Caring
for
Kids.
Garros D et al. Pediatrics 2003; 112:e371
100 %
51 %
97 %
100 %
100 %
75 %
53 %
29 %
10 %
Clinicians’ Attitudes and Practices
Toward End of Life Care
• Attitudes and practices vary and may be
explained by an individual’s:
–
–
–
–
–
Political or religious affiliation
Culture
Beliefs or values
Profession
Experience
Burns JP et al. Crit Care Med 2001; 29:658
Randolph AG et al. Pediatrics 1999; 103:e46
Solomon MZ et al. Pediatrics 2005; 116:872
Caring
for
Kids.
Reasons for Clinicians Limiting or Withdrawing LST
•
•
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•
•
•
•
•
•
No benefit - Imminent death
Excessive burden - Unacceptable decrement in quality of life
No relational benefit - Survival with severe neurologic dysfunction
Diagnosis
Acute versus chronic disease
Perceived benefit
Prognosis
Family preference
Probability of survival
Functional status or Quality of life
Caring
for
Kids.
Randolph AG et al. Crit Care Med 1997; 25:435
Levetown M et al. JAMA 1994; 272;1271
Keenan HT et al. Crit Care Med 2000; 28:1590
Factors Influencing Clinicians’ Decisions on
the Extent of Life Support to Provide
Physicians, % Nurses, %
QOL as viewed by the patient
99
99
QOL as viewed by the family
95
96
Patient unlikely to survive
94
91
Potential for neurologically intact survival
81
77
QOL with a chronic disorder
61
73
Fear of litigation or breaking the law
23
32
Financial cost to society
13
33
QOL = Quality of Life
Burns et al. Crit Care Med 2001; 29:658
Caring
for
Kids.
Parental Stresses
• 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
Morrison AL Pediatr Crit Care Med 2004; 5:585
Meyer EC et al. Crit Care Med 2002; 30:226
Caring
for
Kids.
Factors Influencing Parents’ Decisions
to Forgo LST
• The parents previous experience with death & end of
life decision making for others
• Their personal observations of their child’s suffering
• Their perceptions of their child’s will to survive
• Their need to protect & advocate for their child
• The family’s financial resources
Sharman M et al. Pediatr Crit Care Med 2005; 6:513
Caring
for
Kids.
Factors Important to Parents in End of
Life Decision Making
•
•
•
•
Physician recommendations
Diagnosis
Expected neurological recovery
Degree of pain and suffering
Meert KL et al. Pediatr Crit Care 2000; 1:179
Caring
for
Kids.
Factors Important to Parents’ Decisions to Forgo LST
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•
•
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•
•
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•
Quality of life
Likelihood of improvement
Pain or discomfort
Unlikely to survive hospitalization
What I believe my child would have wanted
Information the staff provided
Religious/spiritual beliefs
Child’s appearance or behavior
Advice of hospital staff
Attitudes of hospital staff
Advice of family and friends
Financial costs
Caring
for
Meyer EC et al. Crit Care Med 2002; 30:226
Kids.
Parental Satisfaction with End of Life
Decision Making
Adequacy of Information
% Parents who Agree
My child’s condition
86.5
My child’s treatment options
78.8
My child’s chances for survival
71.2
Pros/Cons of discontinuing LST
67.3
Pros/Cons of continuing therapy
65.4
Meyer EC et al. Crit Care Med 2002; 30:226
Caring
for
Kids.
Parental Satisfaction with End of Life
Decision Making
“Physician recommendations, review of
options, and joint formulation of a plan helped
parents gain a sense of control over their
situation.”
Sharman M et al Crit Care Med 2005; 6:513
Caring
for
Kids.
Life Sustaining Therapies
• May be withheld or withdrawn (forgone)
– Ethically, there is no difference between withholding or
withdrawing a therapy
• May be removed simultaneously or sequentially
– Usually LST are withdrawn simultaneously
• Most deaths will occur within 24 hours following
withdraw of LST
Burns et al. Crit Care Med 2000; 28:3060
Zawistowski C et al. Pediatr Crit Care Med 2004; 5:216
Caring
for
Kids.
Types of LST Forgone
•
•
•
•
•
•
•
•
Mechanical Ventilation
Vasoactive Infusions
Renal Replacement Therapies
Invasive Catheters
Extracorporeal Membrane Oxygenation
Antibiotics
Intravenous Fluids
Feeds
Caring
for
Kids.
Mechanical Ventilation
• Most common LST withdrawn
• Pediatricians are more likely to withdraw mechanical
ventilation than surgeons or anesthesiologists
• Methods of withdraw include:
– Terminal Extubation
– Terminal Wean
Burns JP et al. Crit Care Med 2000; 28:3060
Truog RD et al. Crit Care Med 2001; 29:2332
Zawistowski et al. Pediatr Crit Care 2004; 5:216
Caring
for
Kids.
Terminal Extubation
• Endotracheal tube is removed usually after
administration of sedatives or analgesics
• Commonly used by pediatricians & internists
• Advantages:
– Does not prolong the dying process
– Allows patient to be free of the endotracheal tube
– Can not be confused with a therapeutic wean
Truog RD et al. Crit Care Med 2001; 29:2332
Burns JP et al. Crit Care Med 2000; 28:3060
Zawistowski et al. Pediatr Crit Care 2004; 5:216
Caring
for
Kids.
Terminal Wean
• Oxygen and/or the ventilator rate are weaned over a variable
amount of time
• Leads to progressive hypoxemia and hypercarbia
• Advantages:
–
–
–
–
No upper airway obstruction develops
Symptoms of air hunger do not develop
May be perceived as being less active than terminal extubation
May be perceived by families as an attempt to have the patient
successfully survive separation from the ventilator
Truog RD et al. Crit Care Med 2001; 29:2332
Caring
for
Kids.
Pain and Symptom Management as LST
is Withdrawn
• Sedatives and/or analgesics are frequently
administered after withdraw of LST
• Comatose patients are less likely to receive
analgesics or sedatives
Burns JP et al. Crit Care Med 2000; 28:3060
Zawistowski CA et al. Pediatr Crit Care Med 2004; 5:216
Caring
for
Kids.
Analgesia & Sedation During Withdrawal
of LST
• Mean doses of analgesics or sedatives are
usually increased as LST is withdrawn
• Some research has shown no relationship
between the dose of morphine used and the
time of death after ventilator withdrawal
Burns JP et al. Crit Care Med 2000; 28:3060
Partridge JC et al. Pediatrics 1997; 99:76
Caring
for
Kids.
Clinicians’ Rationale for Analgesia or
Sedation During Withdrawal of LST
•
•
•
•
•
Decrease pain
Decrease anxiety
Decrease air hunger
Comfort the family
Hasten death
Burns JP et al. Crit Care Med 2000; 28:3060
Caring
for
Kids.
Principle of Double Effect
• Clinicians can give sedatives and analgesics to
dying children to relieve suffering
• These medications may result in a hastening of
death
• However, the intention is to relieve the child’s
pain and suffering and not to cause death
Solomon MZ et al Pediatrics 2005; 116:872
Quill TE et al. NEJM 1997; 337:1768
Caring
for
Kids.
Analgesics & Sedatives Commonly Used
During Withdrawal of LST in the PICU
Analgesics
• Opioids
Sedatives
• Benzodiazepines
– Morphine
– Fentanyl
– Meperidine
– Midazolam
– Lorazepam
– Diazepam
• Barbiturates
Burns JP et al. Crit Care Med 2000; 28:3060
Zawistowski CA et al. Pediatr Crit Care Med 2004; 5:216
Caring
for
Kids.
– Pentobarbital
– Thiopental
Analgesics for End of Life Care in the
ICU
Caring
for
Kids.
Sedatives for End of Life Care in the ICU
Caring
for
Kids.
Clinicians’ Satisfaction with Pain Control
During Withdrawal of LST
• In most cases, both nurses & physicians agree
that the analgesics & sedatives given were
sufficient to ensure patient comfort
• In 13% of the cases, nurses thought the amount
of analgesia & sedation was inadequate
Burns JP et al. Crit Care Med 2000; 28:3060
Caring
for
Kids.
Parental Satisfaction with Pain Control
Adequacy of Pain Control
– 55% of parents reported that their child was
comfortable in his or her final days
– 25% were neutral
– 20% disagreed
Meyer EC et al. Crit Care Med 2002; 30:226
Caring
for
Kids.
Neuromuscular Blockade Agents
(NMBA)
• NMBA possess no sedative or analgesic
activity
• NMBA may be required to facilitate
mechanical ventilation
• Dilemmas exist regarding the withdrawal of
ventilation & NMB induced paralysis
Truog RD et al. Crit Care Med 2001; 29:2332
Caring
for
Kids.
Neuromuscular Blockade Agents
(NMBA)
• Approximately 1/3 of pediatric intensivists &
over 85% of other pediatric subspecialists were
either uncertain or agreed that it was
appropriate to provide NMBA with analgesia
before withdrawing a ventilator in a child
whose death was imminent
Solomon MZ et al. Pediatrics 2005; 116:872
Caring
for
Kids.
Guidelines for the Use of NMBA at the
Time of Withdrawal of Ventilation
• NMBA should never be introduced when
mechanical ventilation is being withdrawn
• In patients who are already receiving NMBA,
neuromuscular function should be restored
before the life support is withdrawn.
Troug RD et al. New Engl J Med 2000; 342:582
Caring
for
Kids.
Guidelines for the Use of NMBA at the
Time of Withdrawal of Ventilation
• The only exception to this rule should be:
– When death is expected to be both rapid and certain
after the removal of ventilation, and
– When the burdens to the child & family of waiting
for the neuromuscular blockade to diminish to a
reversible level exceed the benefits of allowing
better assessment of the patient's comfort and the
possibility of interaction with loved ones.
Troug RD et al. New Engl J Med 2000; 342:582
Caring
for
Kids.
Symptoms & Suffering of Dying Children
Caring
for
Kids.
Wolfe et al. NEJM 2000; 342:326
Symptoms & Suffering of Dying Children
Caring
for
Wolfe et al. NEJM 2000; 342:326
Kids.
Caring
for
Kids.
Wolfe et al. NEJM 2000; 342:326
Symptoms of Dying Children
Caring
for
Kids.Drake R et al J Pain Symptom Manage 2003; 26:594
Parental Grief
• Grieving is a gradual process passing through various
phases
• Early grief
– Characterized by disbelief, confusion, and unreality
• 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
Caring
for
Kids.
Factors Influencing Parental Grief
• 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
Caring
for
Kids.
Parental Grief & Coping after Death of a
Child in the PICU
• Acute versus Chronic Disease
– Parents whose child died acutely had greater intensity of early and longterm grief than those whose child died of chronic illness
• 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
• 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
Caring
for
Kids.
Spiritual Needs of Bereaved Parents of a
Child in the PICU
• 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
Caring
for
Meert KL et al. Pediatr Crit Care Med 2005; 6:420
Kids.
Improving the Quality of End-of-Life
Care in the PICU
Parents’ priorities and recommendations include:
–
–
–
–
–
–
Honest and complete information
Ready access to staff
Communication and coordination of care
Emotional expression and support by staff
Preservation of the integrity of the parent-child relationship
Faith
Meyer EC et al. Pediatrics 2006; 117:649
Caring
for
Kids.
Summary
• Most infants & childhood deaths occur within the PICU
usually after a decision to forgo LST
• Palliative and intensive care can coexist & are present to
some degree
• The ideal decision making process is one of negotiation
between the caregiver, child, & surrogates and reaches a
consensus that is in accordance with the values and
choices of the patient and family
Caring
for
Kids.
Summary
• Quality of life and likelihood of survival are important
factors impacting the decision of both parents and
clinicians to forgo LST
• The location of death impacts the number and types of
symptoms of dying children
• Many children are reported to suffer in their last days of
life
• Parental grief and coping are impacted by physical well
being, self worth, presence, acuity of their child’s illness,
and the emotional attitudes of staff
Caring
for
Kids.