Pediatric Palliative ACP

June 21, 2024
Care Models
3 min
Justin Hallen, VP

Pediatric palliative care is a specialized medical field focused on improving the quality of life for children with serious illnesses. This field faces significant challenges, as outlined by Hospice News, particularly in addressing the unique needs of adolescents and young adults. Providers are not only managing physical symptoms but also addressing the emotional, psychological, and developmental needs of children and their families. This complex interplay of social, emotional, and psychological factors in this age group complicates advance care planning and goals of care. Developmental issues, cognitive impairments due to chronic illnesses, and family dynamics further influence decision-making. Addressing these complexities is crucial for providing the compassionate, comprehensive care that young patients and their families need. 

The following factors compound the issue further. Many healthcare providers lack specialized training in pediatric palliative care, leading to gaps in knowledge and skills necessary for effective symptom management and communication. Limited availability of pediatric palliative care services, especially in rural areas, restricts access to necessary care. Inadequate funding and staffing further exacerbate these challenges. Healthcare providers and families often face significant emotional strain; supporting both providers and families emotionally is crucial for maintaining high standards of care.

There are many effective tactics to enable effective pediatric palliative care. Involving adolescents in their care decisions, even if not final decision-makers, is crucial for fostering their decision-making skills and ensuring care aligns with their values and needs. Providing specialized training for healthcare providers in pediatric palliative care, including motivational interviewing, communication skills, symptom management and ethical decision-making, can bridge knowledge gaps and improve care delivery, helping providers understand and support their patients’ goals. Implementing integrated care models that bring together multidisciplinary teams can enhance care coordination and ensure that all aspects of the child's and family's needs are addressed. Offering emotional and psychological support, including counseling, support groups, and stress management resources, to both families and healthcare providers can mitigate the emotional strain associated with pediatric palliative care. Advocating for policy changes that increase funding and resources for pediatric palliative care can improve access and quality.

In addition to the above tactics, training and enabling providers in how to engage their patients and their families in a compassionate discussion and documentation of the child’s end of life wishes in an advance care plan is a critical element of a strong pediatric palliative care program. Thanacare’s platform helps pediatric patients’ families and providers have a dedicated space to discuss goals of care, align on those goals, and share those goals with the entire care team. Parents can take ownership and track their children’s progress with digital notes, videos, and additional medical documentation. By providing parents a digital tool to support and navigate their child’s care journey effectively provides parental empowerment.

Pediatric palliative care is essential for enhancing the quality of life for children with serious illnesses and their families. Overcoming the barriers to high-quality care requires a comprehensive approach that includes better training, integrated care models, seamless advance care planning processes, and strong support systems for both providers and families. By addressing these challenges, we can ensure that children receive the compassionate, comprehensive care they deserve.

If you are interested in starting a conversation about what matters most when it comes to your care wishes, schedule with Thanacare today.