Pediatric Palliative and End-of-Life Care: Key Concepts and Practices

What is the goal of palliative care?

To achieve the best quality of life for patients and their families, consistent with their values.

What factors influence a child's understanding and coping with illness and death?

Child's age, personality, life experience, loss history, parental communication, and social support.

What does spirituality and meaning making involve for children coping with serious illness?

Psychological themes connecting with spiritual awareness.

What is a common response from practitioners regarding spirituality in pediatric care?

Failure to adequately express the spiritual dimension due to discomfort.

What are some creative approaches to connect with children in palliative care?

Play, art, storytelling, music, books, writing, and conversation.

What are the cornerstones of clinical practice in pediatric palliative care?

Responding to ethical claims, adopting a collaborative stance, cultivating cultural humility, and developing reflective practice.

What does cultivating cultural humility require?

Awareness and self-critique of one's own culture and understanding the child's and family's perspectives.

How is suffering defined in the context of pediatric palliative care?

As anguish experienced as a threat to personal integrity and fulfillment of intentions.

What ethical claim is imposed on caregivers of dying children?

An obligation to the child and family due to their extreme vulnerability.

What is the significance of adopting a collaborative relationship stance?

It recognizes the two-way relationship between practitioners and families, valuing their expertise.

What does reflective practice examine?

The questions of what practitioners do in practice and how they do it.

What are important decisions families must make regarding end-of-life care?

Right to refuse treatment, palliative care, location at time of death, advance directives, DNR orders, autopsy, organ donation, and funeral arrangements.

What does palliative care aim to achieve?

To improve the quality of life for seriously ill individuals and support them and their families.

What is the focus of hospice care?

Relieving symptoms and supporting patients with a life expectancy of months, not years.

What are the psychosocial needs of a dying child?

Time to be a child, self-expression, spiritual needs, and comfort in knowing they aren't alone.

What are some physical needs of dying children?

Routine for rest, nutrition, skin care, and pain management.

What is a common fear associated with dying?

Pain, which can often be effectively controlled or eliminated.

What are signs of impending death during the preactive phase?

Withdrawal, talk of death, increased anxiety, loss of interest, and decreased appetite.

What are signs of impending death during the active phase?

Increased weakness, cyanosis, altered breathing patterns, and loss of ability to swallow.

How should practitioners communicate with dying children?

Validate feelings, assume the child hears everything, and assure them of safety.

What are the signs that death has occurred?

Absence of heartbeat, absence of respirations, fixed pupils, and body temperature drops.

What should caregivers do after death occurs?

Shift care to the family, invite others to say goodbye, and create a peaceful environment.

What is the therapeutic value of funeral rituals?

They confirm the reality of death, assist in grief expression, and provide social support.