When every detail matters: Supporting families through a child’s final moments 

It is every parents’ nightmare for their child to have a medical condition where they experience insufferable pain and burdensome interventions that cannot help them.

Many families of children with terminal and/or irreversible conditions worry that their child’s life is or will become one of suffering, pain and medical interventions unable to address their underlying issues. While moments of love and presence are treasured, they may not outweigh the burdens of the medical technology required to achieve them. When parents face this impossible situation, they may choose, with the support of their child’s medical team, to lovingly focus on their child’s comfort rather than prolonging life.

Enhancing comfort could require stopping interventions and medications that previously sustained their child’s body – like mechanical ventilation, circulatory support, dialysis and artificial nutrition and hydration – to allow the disease to run its natural course. This process is called WOLST (withdrawal of life-sustaining therapies).

The result of a “successful” WOLST is a child’s peaceful death and an experience that inflicts the least amount of trauma on their bereaved family. With stakes so high, medical teams need to be highly reliable in delivering evidence-based, high-quality end-of-life care. While foundational work has established WOLST as an ethically appropriate course of action and offered general guidance on end-of-life care for children, it does not provide the procedural detail needed to support consistent implementation in practice. Despite longstanding guidance on pediatric end-of-life care, no universally standardized protocols exist for pediatric WOLST. As a result, alongside important differences in institutional context and available resources, practice variation persists, raising concerns that some patients may miss out on best practices.

To standardize the approach to WOLST at Texas Children’s Hospital, we created a clinical pathway. The goal is to treat WOLST like other high-stakes procedures in the hospital that require judicious planning and expert implementation. Drawing on current literature and the expertise of healthcare professionals involved in end-of-life care, the pathway offers best practices for the WOLST process. Consisting of an online resource and a template in the electronic medical record, it focuses on critical domains of WOLST, including:

• Delegation of roles, including medication administration and discontinuation of ventilatory support.
• Determination of which technologies and medications are to continue and which to stop.
• Management of expected end-of-life symptoms, including pain and shortness of breath.
• Delineation of postmortem care, including the family’s autopsy and organ donation preferences.

The guideline also centers families’ multidisciplinary needs at end of life and recommends involving services such as social work, child life and chaplaincy. As an institutional guideline, medical teams utilize the resource to plan for a WOLST with holistic consideration of the child and family’s physical, emotional, social and spiritual well-being.

This protocol is sponsored by the Evidence-Based Outcomes Committee (EBOC), which means it is now our hospital’s expectation that our teams provide this high-quality care to all our patients who need it. We also hope that other medical professionals and their patients will benefit from this work by implementing similar protocols in their institutions. To this end, we have published about our guideline and the process we went through to create it. We hope and anticipate that this framework will help medical professionals more confidently deliver high-quality WOLST and ensure that patients consistently experience compassionate and expert end-of-life care.

Children and families deserve the highest quality of care at all points of their disease journey, including and especially at end of life. With the creation of this institutional clinical guideline, we hope to standardize the high-stakes and sensitive procedure of WOLST.

By Drs. Josh A. Lipsitz, pediatric palliative care physician, former pediatric nephrology fellow, Texas Children’s Hospital, Baylor College of Medicine; Jessica Casas, associate professor, Department of Pediatrics, Section of Palliative Care, Baylor College of Medicine; Maeve K. Bartiss, Corewell Health Grand Rapids Hospitals; and Kim Sawyer, assistant professor, Department of Pediatrics, Section of Palliative Care, Baylor College of Medicine