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Pediatric Palliative Care 2008


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Title: Pediatric Palliative Care 2008

Pediatric Palliative Care 2008
  • Lynn Meister, MD
  • Vitas Innovative Hospice Care

WHO Definition of Palliative Care
  • Palliative care is the active total care of
    patients whose disease is not responsive to
    curative treatment. Control of pain, or other
    symptoms, and of psychological, social and
    spiritual problems is paramount. The goal of
    palliative care is achievement of the best
    possible quality of life for patients and their
  • Many aspects of palliative care are also
    applicable earlier in the course of the illness,
    in conjunction with anticancer treatment.

Palliative Care
  • Affirms life and regards dying as a normal
  • Neither hastens nor postpones death
  • Provides relief from pain and other distressing
  • Integrates the psychological and spiritual
    aspects of patient care
  • Offers a support system to help patients live as
    actively as possible until death
  • Offers a support system to help the family cope
    during the patients illness and in their own

American Academy of Pediatrics Definition of
Palliative Care(2000)
  • Palliative care is a model of caring for
    patients and their families who suffer from
    life-threatening illnesses.

Palliative Care
  • Palliative care is the art and science of
    child-focused, family-oriented,
    relationship-centered medical care aimed at
    enhancing quality of life and attending to
    suffering. -Himmelstein

Palliative Care
  • Palliative care strives to relieve pain and other
    symptoms of suffering, but also focuses on the
    spiritual, emotional, psychological, social and
    physical needs of the patient and his family.

Basic Principles of Palliative Care
  • The child and family are the center of care
  • The goal is to improve quality of life
  • Each child and family is unique
  • Care is delivered by an interdisciplinary team
  • Care is coordinated
  • Team is always available to families

Basic Principles of Palliative Care
  • Caregiver support is crucial
  • Respite care is essential
  • Bereavement care should be provided for as long
    as needed

Why Pediatric Hospice?
  • 50,000 infants and children die each year in the
    United States
  • 500,000 children are living with life-threatening
  • 12 million children are living with special
    health care needs

US Deaths by Cause and Age, 1979-1997
Cause Of Death Number () of Deaths Number () of Deaths Number () of Deaths Number () of Deaths
lt1 year 1-9 years 10-24 years Total
Non-cancer Chronic Condition 175319 (24.6) 43389 (20.0) 57286 (7.0) 275994 (15.8)
Cancer 3058 (0.4) 24114 (11.2) 52108 (6.3) 79280 (4.5)
Injury 24006 (3.4) 100881 (46.5) 620790 (75.6) 745677 (42.5)
Other causes 511651 (71.6) 48358 (22.3) 91360 (11.1) 651369 (37.2)
Total 714034 (100) 216742 (100) 821544 (100) 1752320 (100)
Feudtner et al. Pediatrics 2001
Physicians (In)Experience with Dying Children
  • In 1998, the ASCO surveyed 228 pediatric
    oncologists, to assess the attitudes associated
    with end-oflife care of children with cancer
  • When asked how they learned to care for dying
    children, the results revealed a lack of formal

Physician (In)Experience with Dying Children
  • Results
  • Trial and Error
  • From Colleagues in clinical practice 82
  • From role models during residency/ fellowship
  • Formal courses

Physician (In)Experience with Dying Childen
  • Physicians reported trial and error to be most
  • Half reported anxiety about having to manage
    difficult symptoms
  • Half reported a feeling of failure at the
    prospect of a child dying within 6 months
  • The lack of a palliative care team was often
    reported as a barrier to good care
  • Hilden et al JCO 2001

History of End of Life Care
  • 103 parents of children who died of cancer
    between 1990 and 1997 at CHB/DFCI were
  • 89 reported that their children suffered a lot
    or a great deal in their last month of life
  • Most common symptoms were
  • Pain
  • Fatigue
  • Dyspnea
  • Conclusion Greater attention must be paid to
  • care for children who are dying
  • Wolfe, J et al NEJM 2000

Current Status of End of Life Care
  • Parents of 119 children who died of cancer at
    CHB/DFCI between 1997-2004 surveyed
  • Hospice discussions occurred more often and
  • DNR orders written earlier
  • Fewer deaths in ICUs or hospitals
  • Parents reported less child suffering from pain
    and dyspnea
  • Parents felt more prepared for death
  • Conclusion Children dying of cancer are
    receiving care that is more consistent with
    optimal palliative care -Wolfe J et al JCO

Assessment and Planning
  • Physical concerns- address pain and non-pain
    symptoms with pharmacological and
    non-pharmacological treatment plan
  • Psychosocial concerns- discuss fears, coping,
    communication, previous experiences with death,
    resources for bereavement
  • Spiritual concerns- review families beliefs
  • Advance Care Planning- identify decision makers,
    provide information on illness, establish goals
    of care, make end of life plans
  • Practical concerns- identify healthcare team
    coordinator, location of care, plan for
    home/school environment, order medical equipment,
    address financial concerns

Pain Assessment in Children
  • Q- Question the child
  • U- Use pain rating scales
  • E- Evaluate behavior and physiological
  • S- Secure parents involvement
  • T- Take the cause of pain into account
  • T- Take action and evaluate results

Behavioral Indicators of Pain
  • Irritability/restlessness
  • Change in sleep patterns
  • Loss of appetite/ change in feeding patterns
  • Inconsolability
  • Variation in crying pattern
  • Repetitive movements (head banging, rocking)

Behavioral Indicators of Pain- 2
  • Postural changes
  • Favoring of affected limb
  • Immobility
  • Unusual acquiescence

Symptom Management
  • Pain
  • Assessment
  • Treatment
  • Non-opioids and opioids
  • Side-effects
  • Barriers
  • Adjuvant
  • Other types of pain
  • Other symptoms

World Health Organization Analgesic Steps
Freedom from cancer pain
3. Strong opioid /- non opioid /- adjuvant
Persistent Pain
2. Weak opioid /- non opioid /- adjuvant
Persistent pain
1. Non-opioid /- adjuvant
Non-opioid Analgesics
  • Acetominophen 10-15 mg/kg PO/PR every 4-6 hours
  • Ibuprofen 10 mg/kg PO every 6-8 hours
  • Naprosyn 5 mg/kg PO every 12 hour
  • Cox II Inhibitors

Weak Opioids
  • Codeine 1-1.5 mg/kg PO every 4 hours

  • Long-acting
  • Methadone (liquid/tabs)
  • MSContin (tabs)
  • Oxycontin (tabs)
  • Fentanyl (tabs/patch/lollypops)
  • Short-acting
  • Morphine (elixir,tabs,IV,SC)
  • Hydromorphone (tabs)
  • Oxycodone (liquid/tabs)
  • Local Control (pain team)

  • Give medications RTC not PRN
  • Try to use PO administration
  • Try to use one drug only maximize dose
  • Reassess pain with every patient contact
  • Escalate dose, not frequency
  • Add breakthrough dose if necessary

Common Opioid Side Effects
  • Sedation
  • Improves with time
  • Psychostimulant methylphenidate
  • Nausea
  • Ondansetron
  • Urinary retention
  • Change of opioid, crede, catheter
  • Constipation
  • Docusate/Senna immediately, fluids, bulk
  • Pruritis
  • Antihistamine
  • Sweating
  • Intractable side effects?
  • Consider a change to alternate opioid or
    rotating opioids
  • Naloxone

Barriers to Effective Pain Management
  • Fear of addiction
  • Symbolic meaning of morphine drip
  • Dislike of altered consciousness/drowsiness
  • Fear of other side effects- respiratory
  • Fear of shortening life
  • Knowledge deficit

Respiratory Depression
  • Principle of Double Effect Effects that would
    be morally wrong if caused intentionally are
    permissible if foreseen but unintended. Does it
  • Risk of respiratory depression is greatest when
    opioids are first begun- tolerance to the
    sedative and respiratory depressant effects
    develop over the first few days
  • Pain acts as antagonist to respiratory depression
  • Proper treatment of pain may actually prolong
    life (Manfredi NEJM 1998), and contribute to an
    enhanced quality of life (JAMA, 1995)

Adjuvant Therapies
  • Guided imagery
  • Hypnosis
  • Acupuncture
  • Accupressure
  • Reike
  • Therapeutic touch
  • Distraction
  • Play therapy
  • Exercise
  • Relaxation techniques/ Breathing exercises
  • Psychological intervention

Other Types of Pain
  • Neuropathic pain
  • May require massive opioid infusions
  • Rx Methadone, Gabapentin, tricyclic
  • Bone pain
  • Cox II inhibitor
  • corticosteroids
  • bisphosphonates

Other Symptoms- Neurodegenerative
  • Immobility
  • Feeding difficulty
  • Failing speech
  • GE Reflux
  • Incontinence/Constipation
  • Mental decline
  • Seizures
  • Muscle spasm
  • Contractures
  • Pressure sores
  • Managing respiratory secretions
  • Recurrent infections

Malnutrition and Dehydration
  • The fundamental responsibility of parents is to
    nourish children- it may be impossible for some
    to withdraw
  • The goal of nutrition and fluid management should
    be to alleviate hunger and thirst, to reduce
    anxiety, to preserve social aspects of meal times
  • Supplemental fluids and nutrition can cause

  • Etiology
  • Disease progression
  • Anemia
  • Malnutrition
  • Sleep disturbance
  • Medication side effects
  • Treat to improve quality of life

Depression and Anxiety
  • 103 parents of children who died of cancer
    between 1990 and 1997 at CHB/DFCI were asked if
    their children suffered in their last month of
  • 53 of the children had little or no fun
  • 29 had significant anxiety
  • 61 had significant sadness
  • 63 were often not calm or peaceful
  • 21 were often afraid
  • We must address these issues

  • Wolfe et al NEJM 2000

Psychosocial Issues
  • Childrens concepts of death at different ages
    necessitate different approaches
  • Explaining death to children

Concepts of Life and Death
  • Infant/toddler Separation issues-death may be
    understood as separation from parents, loss of
    parents comfort. Natural fears about being left
    alone, strangers, pain.
  • Intervention provide maximum physical comfort
    through exposure to familiar persons,
    consistency, favorite toys/objects
  • Pre-school-age child(3-5 years) Separation,
    autonomy, independence, guilt, concrete and
    magical thinking- expansion of death concept to
    include loss of loving and protective object.
    Death is a temporary departure, reversible,
    magical thinking.
  • Intervention minimize separation from parents,
    correct perceptions of illness as punishment,
    assuage guilt, use precise language (ex. Not
    using the word sleep when discussing an
    impending death)

Concepts of Life and Death- 2
  • School-age child(6-11years) Appreciation of
    removal from one kind of physical existence to
    another. Beginning to understand that death is
    permanent. Death associated with fear of
    separation and guilt.
  • Intervention evaluate fears of abandonment, be
    truthful, provide details if asked, allow child
    to participate in decision making
  • Adolescent Independence vs. dependence,
    sexuality, isolation, anger, withdrawal, body
    image- Decision making requires honesty, trust
    and respect. Death is recognized as final,
    irrevocable act, yet accompanied by disbelief in
    the possibility of ones personal death.
  • Intervention reinforce self-esteem, give
    privacy and independence, be truthful, allow him
    or her to express strong feelings and participate
    in decision making

Explaining Death to Children
  • Should parents of children who are terminally ill
    talk about death with their children?
  • 449 parents who lost a child to cancer in Sweden
    between 1992 and 1997 were asked this question
  • None of the 147 parents who talked with their
    child about death regretted it
  • 69 of 258 parents (27) who did not, regretted
    not having done so
  • Kreicbergs et al
    NEJM 2004

Explaining Death to Children
  • Children are ready and able to talk about things
    within their own experience
  • Speak in language appropriate to the childs age
    and maturation level
  • Dont expect a response right way
  • Listen to and observe the child
  • Be available do not try to cover every issue in
    one discussion
  • Allow them to talk freely and ask questions
  • Guidelines based on Lonetto R. Childrens
    conceptions of death. New York Springer 1980

Explaining Death to Children
  • Most dying children know they are dying
  • They want to protect their parents
  • They fear being forgotten
  • Intervention leave a legacy (scrapbook), put
    affairs in order
  • They experience fear, loneliness, anxiety
  • Intervention give honest answers, unconditional
    love and support

  • The child with a terminal illness, their family,
    and even their primary care physician will all
    benefit from the presence of an experienced
    Pediatric Palliative Care Team.