Embracing Technology in Pediatric Palliative Care: A Path to Better Support

Pediatric palliative care is an area of healthcare that has rapidly evolved in recent decades, driven by an increasing awareness of the unique needs of children with serious illnesses and their families. Once primarily focused on end-of-life care, this specialized field now recognizes the importance of alleviating suffering and improving quality of life from the moment of diagnosis. However, providing comprehensive palliative care for pediatric patients remains a significant challenge, requiring ongoing research, education, and innovative approaches to support both children and their loved ones through unimaginably difficult journeys. As we collectively deepen our understanding, it is clear that embracing technology can play a pivotal role in enhancing care delivery and family support. As outlined in the NICHD's State of the Science of Pediatric Palliative Care conference, there are numerous challenges and opportunities to improve the care and support provided to children with serious illnesses and their families. Let's look at the promising avenue of thoughtful integration of technology, for the benefit of the kids, the parents, families, and loved ones, and the supporting clinicians.

1. Documentation and Codification of Disease Progression

Tracking the progression of a child's illness is crucial for informed decision-making and    ensuring that care aligns with the family's wishes. However, manual documentation can be time-consuming and prone to errors or gaps. And repeating the same story over and over again is an exhausting practice. Thanacare streamlines this process by providing a secure, cloud-based app that allows anyone on the caregiving team to record video and text updates, symptoms, and observations. Being able to manage all this in one place brings a sense of ownership and relief during these trying times. Down the line, advanced algorithms and machine learning models can analyze this data to identify patterns, predict potential complications, and suggest appropriate interventions.

2. Communication for and with Care Teams and Family Members

Effective communication is the cornerstone of pediatric palliative care, as it fosters trust, shared understanding, and collaborative decision-making. The EMR does not effectively support these important points, often, instead the EMR is described as a prison. So, it behooves us to take a step back and work outside of this system to build a communication process for pediatric palliative care teams. Thanacare facilitates seamless communication among care teams, families, and clinicians through secure permission-based team roles. Teams can review the documentation mentioned in point #1 above and align all from one tool. This helps bridge geographical distances, reduce confusion, and  ensure that everyone involved is on the same page, especially during critical junctures.

3. Review and Reflection of Care and Decision Timeline

Families navigating the complex journey of a child's serious illness often face numerous decisions and pivotal moments. Maintaining a comprehensive record of these events, along with the rationale behind each decision, can be invaluable for future reference and reflection. Thanacare provides a centralized, chronological repository where care teams and families can document their thought processes, emotions, and considerations, creating a valuable resource for processing grief and addressing lingering questions.

4. Registry to Support Bereavement and Grief,  Reducing What Ifs

The loss of a child is a profound and life-altering experience that leaves families grappling with unanswered questions and lingering doubts. Thanacare's centralized registry serves as a valuable resource for bereaved families. This registry compiles data from medical records, care team notes, and family accounts, providing a comprehensive overview of the child's journey and the decisions made along the way. By having access to this information, families may find solace in understanding the reasoning behind each step, potentially reducing the "what if?" questions that arise days, months, and years later as grief compounds.

5. Security, Privacy, & Strong Permissions Framework

Security is at the forefront of everything we do at Thanacare. Collectively, the security settings  and configurations Thanacare has enabled meet or exceed the specifications of HIPAA and BAA compliance requirements. Additionally, the security configurations that Thanacare provides meet or exceed industry standards. A strong permissions framework ensures different people and different resources are protected on a granular basis. Permissions are opt-in and must be granted explicitly by parents and clinicians so that users will not be granted access to resources they should not have access to. This ensures any improper access grants can be remediated the moment an issue is found.

While Thanacare cannot replace the human touch and empathy required in pediatric palliative care, it serves as a powerful tool to enhance communication, documentation, and support. By embracing innovative solutions, care teams and families can focus their energy on what truly matters – providing compassionate care, making informed decisions, and honoring the lives of these remarkable children.

As the field of pediatric palliative care continues to evolve, it is essential to foster collaborations between healthcare professionals, technologists, and families. By working together and leveraging the power of technology, we can create a more streamlined, transparent, and supportive environment that upholds the dignity and well-being of children and their loved ones during the most challenging of circumstances.