Duchenne Muscular Dystrophy Modules

1 – Introduction to Pediatric Palliative Care – This section is intended as an overall introduction to the training and can be used in conjunction with any of the modules. It provides a brief overview of pediatric palliative care and how it relates to DMD.

2 – Overview of Duchenne Muscular Dystrophy – Use this module to gain a broad understanding of DMD before beginning the Vision of Hope: Duchenne Muscular Dystrophy curriculum.

3 – Many Faces of Hope – This module explores the different types of hope experienced by patients, physicians, and family members. Participants will brainstorm creative methods of encouraging hope in their practice.

4 – Paradox of Promise – Use this short appendix module to supplement the “Many Faces of Hope” module. Paradox of Promise explores the effects of the promise of a cure alongside various types of hope experienced by all those affected by DMD.

5 – Listen to Me – “Listen to Me” examines the important complexities of communication among patients, doctors, and family members affected by DMD, including the role of adolescent decision-making, the limitations of informed consent, and the boundaries of parental and clinician authority.

6 – Unexamined Distress – Use this module to investigate the forms of distress encountered in patients with DMD – both those that are frequently addressed and those that are often ignored.

7 – Ethical Challenges in Duchenne Muscular Dystrophy – This module explores the ethical dilemmas faced by professionals from different disciplines who care for children and adolescents with DMD.

8 – Transitions – “Transitions” provides a glimpse into the difficulties presented by the complex transition between childhood and adulthood for adolescents with DMD.

9 – An Uncertain Future – This module raises the challenges associated with acknowledging and discussing death with children and their families, one of the toughest responsibilities of clinicians caring for adolescents with DMD.

10 – Ethical Landscape/Decision-Making Tool – 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.

11 – On the Edge – This module explores the lived experience of a life-threatening event for an adolescent, his family and his clinicians. The challenges of uncertainty, disease progression and perspective-taking during and after a 7-week stay in the pediatric intensive care unit are highlighted.

12 – Moral Angst: The Heartache of Healers – This module is designed to explore the internal responses (moral, emotional and spiritual) of clinicians who care for children with DMD as they confront intense suffering and moral angst. Often unrecognized, these responses have a profound impact on the clinicians themselves, their interactions with patients, families and their colleagues.