One of PHM15’s first sessions was a workshop led by Dr. Rachna May focusing on the role of pediatric hospitalists in end-of-life conversations.
Medically complex pediatric patients are more likely to have end-of-life care in the hospital, placing the pediatric hospitalist in a unique position to address end-of-life issues. Medically complex patients may have waxing and waning courses, with frequent admissions for acute illness. Following these admissions, they may not fully return to their pre-illness baseline, leading to an overall gradual decline in health. An opportunity for discussing quality of life is available with each acute illness and hospitalization.
These conversations, however, can be difficult to initiate and present several barriers to overcome. These barriers include:
- Unknown parental expectations regarding outcome,
- Lack of an established relationship with the patient and family, and
- Lack of readiness of the patient and family to discuss end-of-life decisions.
To overcome these barriers, providers must develop tools for delivery. They must find the right setting for the conversation, limit distractions, and avoid medical jargon. Begin with asking the patient and family’s perceptions of the clinical prognosis and be honest when discussing the predicted medical outcomes for the patient. Open discussion of the prognosis allows autonomy in decision making, helps families feel supported, and can help them manage distress surrounding end-of-life care.
Such terminology as “do not resuscitate” can be interpreted as “doing nothing,” and result in feelings of guilt for a family desiring care for their child. Using a phrase such as “allowing a natural death” can alleviate feelings of guilt over end-of-life decisions and help the family actively provide care while optimizing quality of life. TH
Dr. Player is a hospitalist and assistant professor in the Department of Pediatrics at Medical College of Wisconsin, Children’s Hospital of Wisconsin in Milwaukee.