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A framework for integrated pediatric palliative care: being with dying
1The Johns Hopkins University and Children's Center, Baltimore, MD 21250, USA. crushton@son.jhmi.edu
Insights
An integrated model for pediatric palliative care is essential for children with life-limiting illnesses. This approach balances medical intervention with quality of life, supporting families through complex ethical decisions.
Area of Science:
- Pediatric Palliative Care
- Bioethics
- Healthcare Models
Background:
- Approximately 55,000 children die annually in the US, with 8,600 benefiting daily from specialized care.
- Existing care models often focus on survival, necessitating a shift towards integrated palliative approaches.
Observation:
- Two case studies presented contrasting care philosophies: aggressive technological intervention versus a focus on quality of life and healing.
- These cases revealed critical elements for an integrated palliative care model, addressing clinical, moral, and ethical complexities.
Findings:
- An integrated model combines 'being' (attunement, presence) with 'doing' (clinical actions) to support children and families.
- Key strategies include active listening, fostering respect, collaboration, managing uncertainty and ambiguity, conflict resolution, and self-care for healthcare providers.
Implications:
- Implementing integrated palliative care requires organizational commitment and specific strategies for pediatric nurses.
- This model aims to improve the care experience for children facing life-limiting conditions and their families.
- Pediatric nurses are pivotal in realizing the vision of integrated palliative care within healthcare settings.
Abstract:
Recent studies highlight the need for an integrated model for palliative and end-of-life pediatric care. About 55,000 children die each year in the United States and, on any given day, about 8,600 children could benefit from care that acknowledges their limited life expectancy and severity of illness. Two case studies of children illustrate different approaches-one that aggressively applies all possible technologies to maximize chances of survival and another that focuses on the patient's overall quality of life and on healing rather than curing. The cases highlight characteristics of an integrated model of palliative care to address clinical, moral, and ethical uncertainties. This model integrates being with doing, provides for developing attunement and presence as capacities for being with children and their parents, and addresses challenges in the healthcare environment. Strategies for integrating palliative care into pediatric practice include listening, fostering respect for the child and parents across the organization, nurturing collaborative connections, managing uncertainty, tolerating ambiguity, making peace with conflict, and committing to self-care. Every pediatric nurse can play a role in making the vision of palliative care a reality integrated into the fabric of pediatric practice.
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Physicians
The physician's primary responsibility is to diagnose illness and direct the medical or surgical treatment of the condition. The authority to admit patients to a healthcare agency or institution and practice care within that setting is granted to physicians by the healthcare agency or institution itself.