This module surfaces the complexity of sharing the moral burden of decision making with patients and parents in the palliative care setting, and offers a tool for assisting in this process.
This module typically takes between 45 minutes and an hour to complete. A more detailed module structure can be found in the DMD Facilitator’s Guide.
- Become familiar with the decision-making tool and identify potential areas for application.
- Learn how to more effectively navigate making decisions involving morally-sensitive issues
The Decision-Making Communication Tool
Presentation by Dr. Ross Hays
Case Study: Duchenne Muscular Dystrophy
Use the following case study to practice applying the principles described in Dr. Hays’ presentation.
A. A frail 12 year old boy with DMD has worsening curvature of the spine with worse pulmonary function, with an overall decline in his health and functional status.
He has a history of depression and weight loss, however, has responded well to Zoloft in the past when taken consistently. He presents with normal cognitive functioning, attending public school with the assistance of an aide and performing at the appropriate grade level. His surgical history includes multiple orthopedic surgeries which he and his parents report have resulted in long and painful recovery periods. He experiences, what he reports as excruciating intermittent hip pain, however has refused further surgery. He is wheelchair bound, requiring assistance for all activities of daily living.
He was recently airlifted to the emergency room in respiratory failure, requiring intubation and mechanically assisted ventilation. He was diagnosed and treated for aspiration pneumonia and an intestinal psuedoobstruction. While hospitalized, he experienced profound weight loss resulting in PEG placement for nutritional support. He also experienced high levels of anxiety, reportedly related to feelings of air hunger and suffocation while on B-Pap.
After a month long hospitalization with slow recovery, he was released with orders for additional supportive care equipment to provide continuous tube feeds and Bi-Pap to support respiratory function at home. He has a younger sister, who is compassionate and attempts to get involved in his care.
Spinal fusion surgery is an option for improving his quality of life.
B. Now imagine that this family has very different socioeconomic circumstances. His parents are migrant workers which means they are constantly moving and can’t comply with rehab. He has no medical insurance and their home is not ADA accessible. The health care team is concerned about possible post-op noncompliance and complications because of his parents’ SES and lack of continuity with respect to his healthcare team.
Debrief Plenary: Ethical Framework for Decision Making
- What new insights did you gain about ethical decision-making?
- How might you apply the decision-making tool to your clinical practice?
- What new insights did you gain regarding responding to ethical conflicts?
- What lingering questions do you have?
Application to Self and Home Institution
- Regarding what we have discussed during this group, what change would you like to see/make at your home institution?