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Palliative Care and End-of-Life Issues

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Palliative medical care means alleviating the symptoms of disease without curing the disease; it includes mitigating suffering by alleviating pain & other symptoms. – PowerPoint PPT presentation

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Title: Palliative Care and End-of-Life Issues


1
Palliative Care and End-of-Life Issues
2
  • Palliative medical care means alleviating the
    symptoms of disease without curing the disease
    it includes mitigating suffering by alleviating
    pain other symptoms.
  • The ultimate goal of medicine is to prevent or
    cure disease save or preserve life. Palliation
    requires caring for the patient when cure is not
    probable or possible.
  • The palliative care of children includes the
    comprehensive assessment management of the
    medical, psychosocial, cultural, and spiritual
    concerns before and during the end-of-life process

3
  • The ability to diagnose and to treat many
    previously untreated diseases has raised the
    expectations of patients and families for
    effective cures the prevention of disease and
    disability.
  • As a culture, we have denied or suppressed the
    reality of death many physicians have difficulty
    accepting the death of their patients.
  • For parents, the death of a child is one of the
    most painful and distressing life events, and the
    related grieving usually lasts longer than all
    other types of grief and may never be resolved.

4
  • Faced with the impending death of a child, the
    family and the clinician should use palliative
    care, whether in the home, hospital, or a hospice
    program.
  • The goal of palliative care is to apply the best
    available medical care and to maintain, improve,
    and support the quality of life of children, at
    their most effective level of functioning, until
    the time of death.

5
  • Medical care in this situation is a continuum
    from curative medicine to palliative care
    (comfort care) to helping the child, parents,
    other children, extended family, community
    members as the child proceeds through the dying
    process to bereavement counseling and finally
    to long-term follow-up of the family.
  • Curative care and palliative care can coexist
    aggressive pain medication may be provided, while
    curative treatment is continued in the hopes of a
    remission or improved health status.

6
  • The pediatrician should support the child and the
    family when death becomes inevitable and provide
    bereavement counseling and follow-up of families.
  • Most pediatricians care for a very small number
    of children who die each year face an
    unexpected professional challenge when a child
    dies.
  • The ethical, legal, psychosocial, cultural, and
    spiritual issues add to the complexity of
    decision making under these circumstances.

7
  • Parents usually turn to their pediatricians to
    discuss issues such as disclosure of information
    to the child or other family members, changes
    from curative to palliative care, how to talk
    with the child who is dying, and the involvement
    of the child the family in decision making
    about treatment options, including withholding
    and withdrawing treatment.
  • The pediatrician needs to collaborate with other
    clinicians in an interdisciplinary team to
    address these complex issues.

8
Children who are terminally ill or who have a
life-threatening illness have
  • Conditions for which treatment may be curative,
    but also may fail only 75 of all childhood
    cancers are curable.
  • Conditions that are usually anticipated to be
    terminal, but excellent treatment may enhance the
    quality of life for a prolonged period (e.g.,
    HIV/AIDS or severe cystic fibrosis).
  • Progressive diseases for which there is no
    curative or stabilizing treatment but only
    palliative care the course of illness may extend
    over months or years (e.g., Werdnig-Hoffmann
    disease).
  • Conditions that create significant neurologic
    disability (severe developmental delay and severe
    cerebral palsy) and are associated with an
    increased risk of death

9
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

10
Conditions Requiring Intensive Long-term
Treatment Aimed at Maintaining the Quality of
Life
  • Human immunodeficiency virus infection
  • Cystic fibrosis
  • Severe GI 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

11
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

12
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

13
  • Hospice care is a treatment program for the end
    of life. It consists of a range of palliative
    care services, usually provided by an
    interdisciplinary team, including members of the
    clergy specialists in the bereavement and the
    end-of-life process.

14
  • Palliative care treatments include symptom
    relief (e.g., pain, dyspnea, nausea), management
    of emotional concerns (e.g., depression,
    anxiety), addressing end-of-life issues in the
    context of the patient and family's values,
    culture, religious or spiritual beliefs, and
    ethical beliefs.
  • Many insurance companies do not provide coverage
    for these services Medicaid uses the adult
    Medicare model, requiring a prognosis of death
    within 6 months for children to receive hospice
    services.

15
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