NUR244 TOPIC 9

Life-limiting Illness in Children

Learning Objectives

  • Discuss the key principles associated with caring for children with life-limiting illnesses and their families.

  • Describe the process of assessment and management of children with a life-limiting illness and their families through an interdisciplinary approach to care.

  • Identify strategies to facilitate coordination of care for children with a life-limiting illness, their families, and their communities.

Paediatric Palliative Care

  • Definition:

    • Palliative Care begins when a disease is first diagnosed and continues throughout the disease trajectory, emphasizing that it is not solely related to end-of-life care.

  • Characteristics:

    • It encompasses multidisciplinary care focusing on the child’s physical, psychosocial, and spiritual needs.

    • Care and support extend to the child’s family, ensuring holistic treatment.

Principles of Palliative Care in Childhood

  • Focus on:

    • Symptom control and support for the whole family.

    • Decision-making processes at the end of life involving parents, the child, and the healthcare team.

    • Treatment options available for terminally ill children across different settings (hospital, home, hospice).

    • Considerations regarding the location and participation in the child’s care.

Paediatric End-of-Life Care

  • Overview:

    • Multidisciplinary care focusing on the child’s and family's physical, psychosocial, and spiritual needs, particularly at the end of life and beyond.

Distinctions Between Paediatric and Adult Palliative Care

  • Differences Include:

    • Fewer children requiring palliative care compared to adults.

    • A broader and more varied range of conditions affecting children.

    • Families are deeply involved in care and decision-making processes, requiring appropriate support in these roles.

    • The necessity of specialized allied health professionals to cater to unique pediatric needs.

    • Emphasis on education and play tailored to children’s developmental stages.

    • Differences in paediatric physiology and pharmacokinetics compared to adults, indicating child-specific medical considerations.

    • Individualized support required for siblings, with consideration for their developmental needs.

    • Care is often home-based, promoting comfort in a familiar environment.

    • Children with life-limiting illnesses may have additional disabilities that complicate their specific palliative care needs.

Types of Life-limiting Illnesses in Childhood

  • Categories of Conditions:

    • Genetic or Congenital Disorders

    • Neurological Disorders

    • Cancers:

    • Types include brain tumors and solid tumors.

    • Respiratory Disorders

    • Gastrointestinal Disorders

    • Cardiovascular Disorders

    • Metabolic Disorders

    • Renal Diseases

    • Immunological Disorders

  • Additional Classifications:

    • Illnesses that may allow for treatment but fail to cure, e.g., certain cancers.

    • Long-term treatment aimed at prolonging life but ultimately limited, e.g., complex cardiac diseases.

    • Progressive diseases with no curative options, e.g., neurodegenerative disorders (e.g., Batten Disease, Spinal Muscular Atrophy type 1).

    • Irreversible illnesses causing disabilities leading to severe health complications, e.g., severe cerebral palsy with complex medical needs.

Impact of Life-limiting Illnesses

  • Affects the following dimensions:

    • Physical: Chronic symptoms requiring management.

    • Emotional: Altered self-image; striving for normality is common, introducing psychological stressors.

    • Spiritual: Existential questions and concerns arise regarding illness and mortality.

    • Social: Influence extends to friendships, school experiences, and broader communities.

  • Key Considerations:

    • A child's understanding of their illness is shaped by age and developmental stage, necessitating individualized assessments.

Children’s Age Related to Understanding of Dying and Death

  • Ages 0 - 2:

    • Death perceived as separation/abandonment, no cognitive understanding.

    • Experiences despair from disruption in caretaking routines.

  • Ages 2 - 6:

    • Often believe death is reversible or temporary; magical thinking prevalent.

    • May feel guilt regarding negative emotions toward the deceased, thinking those caused the death.

  • Ages 6 - 11:

    • Gradual understanding of death’s irreversibility, with a developing capacity for concrete reasoning and cause-effect relationships.

  • Ages 11 and older:

    • Understands death as irreversible, universal, and inevitable with abstract and philosophical thinking capabilities.

Awareness of Dying in Children with Life-Threatening Illness

  • Key Strategies for Discussion:

    • Provide honest, accurate, and developmentally appropriate information.

    • Engage with children's previous knowledge on the topic to help frame discussions.

    • Discuss children's understanding and reactions to death through supportive interactions and clarifications.

  • Role of Nursing Staff:

    • Offer support and guidance, working within an interdisciplinary team to clarify misconceptions and promote understanding.

    • Encourage children to actively participate in discussions and repeat information for clarity.

Strategies for Communication with Children

  • Customize communication methods to the child’s developmental stage, using aids such as:

    • Drawings, books, or action-based toys.

  • Consistently be honest and trustworthy, providing clear answers to queries.

  • Foster relationship-building moments separate from illness discussions.

  • Allow opportunities for children to take breaks from family and caregivers.

  • Show readiness to revisit conversations about care needs.

Assessment Areas for Children with Life-Limiting Illness

  • Physical Concerns:

  • Psychosocial Concerns:

  • Spiritual Concerns:

  • End-of-Life Care Planning:

  • Practical Concerns:

Family Experience with Life-limiting Illness

  • The emotional toll includes grief, shock, fear, suffering, helplessness, and denial.

  • Parents may feel failure for not preventing suffering or reduced life expectancy, leading to chronic sorrow and increasing caregiving burdens.

  • Even with preparation, parents may experience shock and disbelief upon their child’s death.

Parental Considerations

  • Emotional Responses:

    • Fear, anxiety, and stress observed in parents relating to their child's suffering.

  • Financial Considerations:

    • Added expenses for medical care, equipment, and transportation, alongside impacts to employment due to caregiving responsibilities.

  • Physical Health:

    • Decline in health linked to stress and caregiving duties.

Sibling Experience

  • Challenges Include:

    • Increased household responsibilities and stressors linked to family dynamics.

    • Anxiety regarding their ill sibling and separation from parents is common.

    • Feelings of guilt or embarrassment concerning their sibling's illness or disability.

Education and Support Needs for Families

  • Areas of Focus:

    • Educational requirements: comprehensive understanding of illness and care strategies.

    • Emotional and spiritual guidance: necessary during caregiving and bereavement.

    • Specific support for siblings to address their unique concerns and emotional states.

Communication with Families

  • Difficulties often arise when discussing death, making it vital to facilitate conversations around care choices and advanced planning with both the child and family.

  • It is crucial to gauge their individual understanding and validate these discussions despite their reluctance to address illness openly.

Considerations During Conversations About Death

  • Pre-plan discussions, considering timing and environment for sensitive information delivery.

  • Assess previous knowledge to tailor conversations effectively.

  • Utilize empathetic and concise communication, recognize the impact of emotions, and allow silence where necessary.

Essential Communication Factors for Clinicians

  • Emotional Acknowledgment: Such as recognizing present feelings.

  • Expressing Regret: Understanding the pain the family is going through.

  • Instilling Hope: Commitment to providing comfort and support.

  • Quality of Life Focus: Emphasizing the goal of comfort.

  • Supporting Resilience: Acknowledging the struggles and strengths of families.

  • Relationship Recognition: Highlighting collaborative efforts in care.

Sibling Involvement and Support

  • Involvement in care discussions and caregiving instances if they desire to participate.

  • Provide sibling-focused education regarding their brother's or sister's condition.

  • Allocate time for siblings to express concerns in a safe space with healthcare providers.

  • Offer access to support groups with peers in similar situations.

  • Validate their individual experiences and promote emotional expression.

Grandparents’ Roles

  • Grandparents are often central to supporting the family through illness and death.

  • They experience complex grief stemming from both grandchild loss and their child’s suffering, possibly prioritizing family members' emotions over their own.

Symptom Management and Quality of Life

  • Children exhibit different symptomatic expressions compared to adults, necessitating child-specific assessments.

  • Symptoms impacting social abilities can lead to isolation.

  • Recognize that children’s verbal feedback is critical in assessing symptoms and managing quality of life.

  • Management Practices Include:

    • Thorough assessment of symptoms.

    • Identifying contributing factors to distress.

    • Tailored pharmacological and non-pharmacological interventions based on the individual needs of the child.

    • Continuous evaluation and adjustment of care strategies.

Common Symptoms Experienced by Children with Life-limiting Illnesses

  • Physical Symptoms:

    • Pain

    • Dyspnoea/Cough

    • Fatigue

    • Poor Appetite

    • Nausea and Vomiting

    • Constipation/Diarrhoea

    • Changes in Sleep Patterns

    • Swallowing Difficulties

    • Fever

  • Emotional Symptoms:

    • Anxiety

    • Irritability/Agitation

Care at the Time of Death

  • Considerations Include:

    • Changes observed physically and emotionally.

    • Holding death vigils and honoring rituals specific to the family’s spiritual or cultural beliefs such as organ or tissue donation.

Postmortem Care

  • Facilitate processing and closure:

    • Allowing time for goodbyes.

    • Offering options for bathing and dressing the child's body.

    • Participating in supportive activities, providing written materials, and follow-up communication.

Special Decisions at Time of Dying and Death

  • Addressing concerns regarding:

    • Unexpected childhood deaths and anticipatory grief.

    • Community follow-up services.

    • Decisions on DNR and organ/tissue donation, as well as sibling attendance at services.

Care of the Grieving Family

  • Recognizing diverse grief experiences:

    • Parental and sibling grief includes feelings of shock, disbelief, anger, depression, confusion, and despair.

    • Understanding the process of mourning, with potential developments including disorganization followed by reorganization during bereavement.

Stages of Grief

  • Common stages include:

    • Denial

    • Anger and Depression

    • Guilt

    • Ambivalence

Coping with Stress

  • Techniques for managing stress include:

    • Enhancing self-awareness.

    • Knowledge acquisition and practice of stress relief techniques.

    • Establishing robust support systems, including debriefings.

    • Adopting methodologies for finding meaning in experiences.

    • Clearly separating professional obligations from personal life and prioritizing self-care.

References

  • End of Life Essentials. Education Modules. (2021). Retrieved from https://www.endoflifeessentials.com.au/tabid/5195/Default.aspx

  • Fraser, J., Waters, D., Forster, E., & Brown, N. (2022). Paediatric Nursing in Australia and New Zealand (3rd Ed). Cambridge University Press.

  • Palliative Care Curriculum for Undergraduates (PCC4U) Project Team. (2012). Principles for including palliative care in undergraduate curricula. Brisbane, QLD: QUT.

  • Speedie, L. & Middleton, A. (2019). Wong’s Nursing Care of Infants and Children Australia and New Zealand Edition - For Students. Elsevier.