Caring for Children

1
Caring for Children Adolescents with HIV/AIDS

• Nancy Hutton, M.D.
• Pediatric Adolescent HIV/AIDS Program
• Harriet Lane Compassionate Care
• The Johns Hopkins Childrens Center

2
Objectives

• HIV/AIDS epidemic in children and adolescents
• Clinical issues in caring for children with HIV
• Clinical case
• Impact of Highly Active Anti-Retroviral Therapy
• Integration of palliative care from the time of
  diagnosis

3
Impact of HIV/AIDS on Children UNAIDS AIDS
Epidemic Update 2003

• Children lt15 years
• 2.5 million living with HIV/AIDS (6)
• 700,000 newly infected in 2003 (14)
• 500,000 AIDS deaths (17)
• 14 million orphaned by AIDS since beginning of
  the epidemic

4
Routes of Infection

• Mother to child transmission (MTCT)
• Sexual activity
• Sexual abuse
• Heterosexual
• Men with men
• Injection drug use
• Unscreened blood blood products
• Contaminated or reused medical equipment

5
Medical Complications of HIV

• Opportunistic infections
• Growth failure
• Neurodevelopmental abnormalities
• Motor cerebral palsy
• Cognitive learning problems
• Behavior attention deficit hyperactivity
• Organ failure (heart, lungs, kidney, liver)

6
Mental Health Complications

• Depression
• Suicidal thoughts plans
• Hopelessness
• Dementia
• Delirium

7
Clinical Management

• Antiretroviral therapy
• Control HIV replication
• Prevent or reverse immunodeficiency
• Opportunistic infection prophylaxis
• Reduce morbidity and mortality
• Treat reversible complications
• Manage irreversible complications

8
Growth Development

• Physical growth physiological maturation
• Medication dosing
• Motor skills development
• Independence
• Cognitive development
• Language acquisition
• Social emotional maturation

9
Social Emotional Challenges

• Social stigma
• Secrecy, isolation, guilt
• Comorbid conditions in families
• Substance use, psychiatric conditions
• Socioeconomic need
• Coping
• Living with life-threatening condition
• Multiple losses

10
Culture, Race, Ethnicity

• Historical barriers to care
• Suspicion
• Desire for best care
• Religious/spiritual
• Beliefs about life and death
• Meaning of pain and suffering

11
Spring 1999

• 12 year old boy
• In utero drug exposure
• Abandoned in newborn nursery - foster care
• Developmental delay - special education
• Clinically stable until age 8 years

12
Disease progression

• Extremely low CD4 count
• Absolute CD4 5
• High viral load
• HIV RNA gt750,000 copies
• Minimal response to antiretroviral therapies
• Multiple nucleoside RT inhibitors (NRTI)
• Two available protease inhibitors (PI)

13
Disease progression

• Neurologic deterioration
• Confusion
• Gait change
• Difficulty swallowing
• Opportunistic infections
• Pneumocystis carinii pneumonia
• Candida esophagitis

14
Quality of life

• Loved by his foster family
• Always smiling
• Attending school
• Disney World five times!
• Foster mother aware of his fragile prognosis
• Does not want him to suffer nor to undergo
  interventions that would only prolong his dying

15
Acute illness

• Sudden onset, rapid progression over hours to
  obtunded state
• Intubation and ventilation during acute phase -
  extubation expected
• Mental status improved, but much less than
  baseline
• Acute renal failure - progressive
• No positive cultures

16
Decision making

• Multiple people sharing parent responsibility
• Many health care providers sharing provider
  responsibility
• Ethics committee and court sharing review and
  oversight responsibility
• Foster mother designated full guardian for
  decision making

17
Foster mothers decisions

• Do not extubate until after his 12th birthday (3
  days later)
• Keep him as comfortable as possible
• Continue artificial nutrition and hydration
• Do not reintubate him if he deteriorates again

18
He died two days after his birthday, surrounded
by family, friends, and staff.Foster brother
came to say good-bye with support of child life
specialists.
19
Our experience

• In the beginning, supportive care was all we had
  to offer
• Excellent detection and management of
  complications
• Reducing suffering, promoting growth and
  development
• Family-centered care
• Mother to child transmission

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Impact of HAART

• Decrease in mortality
• Decrease in morbidity
• Decrease in hospital admissions
• Generation of health professionals who have not
  observed the complex, life-threatening nature of
  HIV/AIDS

21
Longterm survivors

• Treatment experienced
• Multiply resistant virus
• Medication toxicity
• Orphaned
• Adolescent understanding of loss regrieving
• Guardianship may be unclear
• Aging caregivers
• Adherence difficult

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There is still no cure

• HIV remains a chronic, life-threatening disease
• Powerful treatment can control disease
  progression but may cause side effects
• Population of infected children youth continues
  to grow

23
Integrate Palliative Care

• Physical comfort and function
• HAART is the best palliation for HIV
• Anticipate and manage side effects
• Emotional reaction/coping
• Social family support
• Respectful communication
• Health care planning decisions

24
Health Care Planning

• Begins at diagnosis
• Effective communication
• Interdisciplinary health care team
• Family
• Child/adolescent
• Disclosure
• Guardianship
• Clarify goals, maintain hope, plan for the future

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Disclosure to children

• Anticipate opportunities for disclosure of HIV
  diagnosis
• By age
• At time of diagnosis
• When initiating or changing medication
• Plan what to say, who will say it
• Be simple and straightforward
• Adults worry about stigma and loss of hope

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Advanced Disease

• Excellent medical management to control symptoms
• Pain (head, chest, abdomen, limb)
• Dyspnea
• Nausea and vomiting
• Diarrhea
• Bleeding

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Symptom management

• Assess accurately
• Developmental approach
• Manage effectively
• Barriers to effective management
• Fears (morphine, addiction, death)
• Lack of professional knowledge skill
• Effective medicines unavailable

28
Advanced Disease

• How do we know a child is approaching the end of
  life?
• Pattern of complications more frequent and severe
• Recovery is never back to baseline
• Not responding to HAART
• Help one problem and two more get worse
• Death can be sudden and unexpected

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Advanced Disease

• Decisionmaking
• What is medically possible?
• What is uncertain?
• Review values and goals
• Views change with time and experience
• Patients may become unable to communicate
• Respect child and family wishes

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Advanced Disease

• Discontinue antiretroviral therapy
• If all regimens have failed
• If medicines are causing more problems than they
  are helping
• If it is impossible to administer the medicines
• Continue active management consistent with
  palliative care goals

31
Social Emotional Care

• Developmentally appropriate activities
• Physical touch
• Play
• Honesty
• Legacy and memory making
• Photographs videos
• Hand molds, hand prints
• Childs wishes after his/her death

32
Care of the Family

• Saying goodbye
• Sibling visits
• Extended family
• Bereavement support
• Maintain contact
• Families want to know their child is not forgotten

33
In summary

• Children are infected and affected by HIV/AIDS
  throughout the world
• HIV management involves treatments used in
  adults, but must be tailored to the child
• As children survive longer with HIV, their
  medical and social needs change
• Palliative care begins at diagnosis and continues
  throughout a childs life