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Health model targets individualized care for pediatric oncology patients
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Although the American Academy of Pediatrics’ policy statement on palliative care for children is more than 10 years old, a number of barriers have been in place that prevent children with life-limiting or life-threatening disorders from receiving high-quality palliative care. Although the list of barriers is extensive, one prominent barrier is the lack of payment for the wide variety of resources these children need.
In 2010, the Patient Protection and Affordable Care Act was signed into law by President Obama. Section 2302 addresses “concurrent care for children” and gives children with terminal illnesses the right to receive both curative and palliative or hospice care at the same time. Although it is up to each state to change its Medicaid services to be in compliance with this, change is on the way (as an example, New York enacted concurrent care benefits for children as of March 23). Health care providers need to be aware of these changes to ensure their patients are receiving the services they are entitled.
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A model developed by researchers at St. Jude Children’s Research Hospital to deliver high-quality palliative and end-of-life care to pediatric oncology patients is the “individualized care planning and coordination” (ICPC) model. The premise behind the model is based on published data showing that parents of pediatric oncology patients have two primary goals: the goal of cure and the goal of lessening their child’s suffering. Introduction of palliative care into every pediatric oncology patient’s care at diagnosis addresses both of these goals.
The planning aspect of the model emphasizes developing a relationship between the health care team and the patient and family. This entails gaining an understanding of the patient and family’s illness experience and discerning their values and priorities before difficult decision points are reached. During this phase, the health care team must provide information about prognosis and treatment options. Working as a team, the patient, family and health care providers then develop a comprehensive care plan incorporating all these factors. Application of this model enhances the ability of the patient, family and health care team to negotiate care options in the face of uncertainty.
The care coordination aspect of the model is the process of implementing the individualized care plan. The authors of the model note that attention must be paid to the relational aspects of the ICPC model because research has shown that parents’ perception of quality of care is based more on communication and caring shown by health care providers than specific interventions or biologic parameters. Care coordination entails advance care planning and, when necessary, ethics consultation. Coordination of ongoing care and continuity of care are essential elements that entail interdisciplinary communication and collaboration. Throughout the disease trajectory, symptom control and emotional, social and spiritual support are key to the well-being of the patient and family. The care plan provides a foundation and guide for this, especially when unexpected or unwelcomed changes in a patient’s status occur. End-of-life and bereavement care are the final elements in the model.
Changes in health care law now entitle children with life-limiting or life-threatening conditions to receive not only treatment aimed at cure, but treatment aimed at comfort as well. The ICPC model serves as a guide to those caring for children with cancer to ensure their patients and their patient’s families receive the care they deserve.
For more information:
- Aging with Dignity. Five Wishes Resources. Available at: www.agingwithdignity.org/catalog/product_info.php?products_id=85.
- Baker JN. Pediatr Clin North Am. 2008;55:223-250.
- Children’s Hospital Boston. Bereavement Experience Journal. Available at: www.experiencejournal.com/bereavement/index.shtml.
- National Hospice and Palliative Care Organization. Concurrent Care for Children Requirement: Implementation Toolkit. Available at: www.nhpco.org/i4a/pages/index.cfm?pageID=3689.