97. Case: Surgery, Supported Decision Making and Capacity

Alex is a 27 year old resident in a supported living facility.  She has a diagnosis of developmental delay.  She is close with her younger brother, Anton.  Alex has identified Anton as someone who helps her to make decisions.  The organization that runs the facility where Alex lives has recently adopted a policy in favour of using supported decision making whenever possible.

Alex has a number of cavities and pain in her teeth is interfering with her ability to eat a wide range of foods.  She eats a soft food diet, and the staff at her facility have raised concerns about the long-term health effects of both untreated cavities and the soft food diet.

After some negative experiences in childhood with blood draws that included being held down and restrained, Alex is intensely afraid of needles and white coats.

Anton has had discussions with Alex about different options that the local dentist can provide, but Alex is adamant that she doesn’t want any dental interventions.  Alex says she will just wait until all her teeth fall out and then get dentures.  She says she’d rather deal with the long-term consequences of eating the soft food diet than face a dental appointment.  Anton observed some of Alex’s interactions with medical care when they were children, and confirms that the experiences were harrowing.

Alex and Anton’s mother is listed as Alex’s substitute decision maker, and the staff feel that Alex’s mother would be willing to authorize sedation and surgery to extract the teeth so that Alex could be fitted for dentures and return to eating a normal, varied diet (which she was happy with before her teeth started hurting).

Some staff members see this is a situation where concerns about Alex’s well-being should override the principled commitment to supported decision making.  They have identified this tension as causing some of them moral distress, and have requested support from the ethics committee.


Questions:

  • What will make this case clinically challenging?
  • What will make this case ethically challenging?
  • How might the ethics committee support the team in dealing with their moral distress?
  • What would change (if anything) if Alex hadn’t had the experience of being restrained for blood draws as a child?
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