Dayna Lee-Baggley calls for improved training for healthcare providers in providing care to patients at the end-of-life.
On June 20, 2016, Julianna, a 5-year-old girl, died from an incurable disease. Julianna made international headlines because her parents and doctors supported her decision to choose “heaven” instead of “hospital” if she had a potentially fatal complication. Julianna’s mom, Michelle Moon, recounts her conversation with Julianna about this decision on her blog.
Michelle reports that she asked Julianna if she’d like to stay home or go to the hospital if she got sick again. She explained to her daughter that choosing to stay home could mean that she would go to heaven without her family. In response, Julianna said she understood and that she believed God would take care of her.
Julianna’s story raises a number of ethical issues regarding the ability of children to make end-of-life decisions. These issues have been heavily discussed in the media. However, less often discussed is the ability of adults to make such end-of-life decisions. This ability is often presumed. For example, in Elizabeth Cohen’s special CNN report on Julianna, she wrote “If Julianna were an adult, there would be no debate about her case: She would get to decide when to say “enough” to medical care and be allowed to die.” In spite of Cohen’s assertion that there would be “no debate” about adult end-of-life decision-making, research and clinical experience suggest that end-of-life decisions are not so straightforward for adults.
Most people want a peaceful death at home surrounded by their family.
The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.