Lisa Chun is a 12 year old recently diagnosed with Crohn’s disease.  She arrived as a refugee from China five years ago with her parents and her younger brother.  She has integrated well into the community and is successful in school.  She often acts as an interpreter for her parents.

Lisa is prescribed corticosteroids and biologic therapies, but she states that she would prefer to pursue treatment with traditional Chinese medicine (TCM), consisting of acupuncture and herbs.  Her parents indicate that they support her in this choice. Lisa’s parents have previously expressed discomfort about the diagnostic tests that Lisa underwent and Lisa and her family have missed a few appointments, which have had to be rescheduled.

The team is concerned about the long-term effects of not treating with conventional therapies, given that Lisa is very small for her age and is not displaying signs of puberty.

Some members of the team who have worked closely with Lisa feel that she has capacity to make this decision.  They believe that her reasoning, based on belief that TCM treatment is better able to respond to the way that Crohn’s has manifested in her body, is appropriate.  Other members of the team feel very uncomfortable with allowing her to refuse conventional therapy altogether, although they say they are willing to explore integrating TCM with conventional approaches.

Finally, certain team members are concerned that they will “lose” Lisa and her family and worry that requiring a capacity assessment for Lisa (or her parents) will irrevocably damage the relationship.

Concerns have also been raised about whether there’s an obligation to contact Child Welfare if Lisa and her parents continue to refuse conventional therapy.

The team has requested support from the ethics committee to help them work out how to approach this situation.

Questions:

What will make this case clinically challenging?

What will make this case ethically challenging?

How might the ethics committee support the team in addressing these challenges?

What would change (if anything) if Lisa and her parents came from Estonia instead of China?