Palliative and End of Life Care for the Pediatric Patient

Hospice Care Model

• Separate service offered to patients and families when curative care is no longer an option

• Medicare funding restricts use to those dying in 6 months or less

• Patient Protection and Affordable Care Act- Medicaid programs pay for both curative/life prolonging treatment and hospice services for children under 21 who qualify.

Palliative Care Model

• It begins when a child is diagnosed, and continues regardless of whether or not a child receives treatment directed at the disease

• Defined as the active, total care for the child's mind, body and spirit, and also involves giving support to the family

Core Concepts Regarding Palliative Care

• Effective and collaborative communication

• Advance planning

• Goal setting

• Coordination of care

• Symptom and pain management

• Reevaluation

Ethical Decision Making

• Do Not Resuscitate (DNR)

• Allow Natural Death (AND)

• Withdraw/ withhold

• Advance directives

• Conflict management

– Parent-patient

– Parent-parent

– Physician-parent

Cultural/Religious Differences

• Different cultures react differently to death and dying

• Religious beliefs surrounding death and dying

• Hope

Spiritual Developmental Stages

• Stage 0- Undifferentiated- Infancy no concept of right or wrong. Faith is established through trust

• Stage 1- Projective-Toddlerhood- Imitating behavior of others. Follow parental beliefs as part of their daily lives with no real understanding

• Stage 2- Mythical-Literal- School Age- Related to children’s experiences and social interactions. Most children have a strong interest at this stage of religion

• Stage 3- Conventional – Pre adolescence- Aware of spiritual disappointment . Reason and question religious practices.

• Stage 4- Individuating – reflexive- Adolescent – more skeptical compare the religious standards of parents to others. Uncertain about many religious ideas

Bereavement / Grief

• Hospital deaths occur most frequently

• Families have no follow-up support

Education About Death

• Developmentally appropriate

• Simple instructions

• Children use their imagination can be worse than reality

• Provide information

– Signs and symptoms of the dying process, what to expect to see .

Parental Perspective Influenced by

• Age of dying child

• Religious beliefs

• Cultural background

• Previous experiences with death

• Perception of death

Sibling’s Perspective Influenced by

• Age

• Guilt

• Belief that their behavior caused the impending death of a sibling

Communication

• The ill child usually has a greater awareness that they are dying .

• Explore concerns

• Provide alternative opportunities for communicating

– Art

– Play

– Music therapy

Communication Guidelines That May Help

• Allow time to express thoughts and feelings for both pt. and family

• Acknowledge and accept all feelings, both positive and negative

• Use of a journal

• Offer safe place for pt. or family to express feelings. Crying offers a release

• Identify any unfinished business and try to come to a resolution