Unit 9 – Grief, Loss, Death & Palliative Care (PowerPoint 2)

Principles of Palliative Care

Multidisciplinary Team Composition
• Nurses, physicians, child-life therapists, social workers, and other allied professionals.
• The family is the unit of care; interventions center equally on patient and family.
Primary Aims
• Maximize quality of life and optimize daily functioning.
• Promote a home‐like environment whether care is delivered in the actual home or an institution.
Scope & Timing
• Initiated at diagnosis of a life-limiting illness—not restricted to end-of-life.
• Distinct from hospice: hospice = care in the final phase of life; palliative ≠ hastening death.
Symptom Management Focus
• Aggressive control of pain, dyspnea, anxiety, nausea, fatigue, pruritus, etc.
• Balance relief with minimization of adverse effects (
opioid constipation, sedation, etc.).

Parental Decision-Making Dilemmas
• Struggle with withholding/withdrawing treatment; fear of “killing” their child.
• Need clear definitions:
– Euthanasia: another person intentionally ends the child’s life.
– Assisted suicide: providing the means for self-inflicted death.
– Both condemned by ANA; nurses must not participate.
Ethically Acceptable Actions
• Foregoing or discontinuing burdensome therapies that prolong life without quality or cause suffering.
Organ Donation & Autopsy
• Highly sensitive; must be offered factually, without pressure.

Principle: Provide honest, developmentally appropriate information.
• Children sense distress even when specifics are hidden.
• Encourage triadic (child–parent–provider) shared decision-making.
Strategies
• Explore what the child already perceives: “What do you think is happening?”
• Ask what messages they want conveyed to others.
• Respect parental wishes yet gently advocate for openness.

No concept of permanency; may behave as if the deceased is alive.
Most disruptive factor = change in routine.
• Nursing goal: maintain consistency of caregivers/environment.

Increasingly logical; personify death (monster, Grim Reaper).
Fears: illness, body mutilation, dying process, the unknown.
By 9–10 yr: adult-like grasp of finality.
Interventions: provide factual explanations, offer choices (industry vs. inferiority), facilitate expression.
Curious about funerals: attire, food, appearance of body—answer honestly.

Most cognitively mature, yet least accepting (sense of invincibility).
May attribute illness to misconduct (“punishment”).
Fear body image changes > prognosis (e.g., limb loss vs. death).
Often view funerals as “morbid parties.”
Nursing focus: maximize autonomy/privacy, acknowledge feelings, encourage peer & family support.

Top Priority: Pain & symptom control.
Family Empowerment
• Encourage parents and siblings to participate in care; promotes adaptive coping.
• Identify relief caregivers to prevent parental burnout.
Sibling Support
• Risk of feeling forgotten—include them in rituals, explanations, bedside activities.
Nurse’s Role
• Cultivate empathy versus sympathetic detachment.
• Suggest support groups to family and staff; shared processing reduces moral distress.
• Attendance at funeral/visitation permissible and often meaningful.

Presence: sit quietly; therapeutic silence > forced dialogue.
Non-Judgment: validate unique cultural, spiritual, or personal choices.
Avoid Clichés: “They’re in a better place” or minimizing remarks.
Resources: connect to professional counseling, faith leaders, self-help groups.
Reassurance: affirm that every medically appropriate measure was attempted.
Emotional Authenticity: nurses may share tears; models healthy grief.
Spiritual Facilitation: arrange clergy/ritual support per family preference.
Post-Mortem Time: allow unlimited bedside visitation.
Follow-Up: send condolences, phone calls, attend services; refer to child by name.
Promote Open Family Communication: reduces risk of maladaptive grief patterns.

Recognize personal grief reactions; seek debriefings or employee assistance programs.
Maintain balance: empathy with boundaries to prevent compassion fatigue.
Peer support and reflective practice (journaling, Schwartz Rounds, etc.) recommended.