Use this module to investigate the forms of distress encountered in patients with Duchenne Muscular Dystrophy – both those that are frequently addressed and those that are often ignored.
- Pain and suffering
Learning Objectives of this Module
- Identify the range of challenges that are commonly discussed as well as those that are not as prominent in the care of children with DMD
- Identify how palliative care can address physical and emotional pain experienced by patients and their family members
Film: Unexamined Distress
This film raises issues related to patients with NMD that are most often addressed and those that are ignored or not assessed. This film elicits discussion points around the following themes:
- Identify the range of challenges that are commonly discussed as well as those that are not as prominent in the care of children with NMDs.
- Appreciate how cultural humility is important in regards to patient experience and the treatment of distress.
- Identify how palliative care can address physical and emotional pain experienced by patients and their family members.
This film is also available in French, Dutch, Greek, Spanish, and Portuguese here.
Reflections and Discussions
Reflections and Discussions
- What are your initial responses to this film? What surprised you? What did you take away from the film?
- What areas of distress do you most often ask about? Which areas of distress do you avoid asking about?
- What are your own areas of distress that go unaddressed?
Physical and Emotional Pain:
“It’s clear that they (patients) have reasons to hurt and they also have reasons to be terrified of the world. And that’s gotta hurt. Both in the physiologic sense and in the more psychic sense.” -Dr. Crawford
- What are the physical and emotional challenges that are typically talked about and acknowledged with patients? Parents/family? Professional caregivers?
- How are physical and emotional pain discussed differently?
- Sometimes patients and family members have difficulty talking about their emotional pain due to the burden of the physical pain. How do you and your team address emotional pain of patients and family members?
- What fears do you have about exploring these issues?
- What are physical and emotional challenges/burdens that may often go overlooked or unexamined for patient, parents, and siblings? (Prompts: Depression, isolation, anger, grief, perception of cognitive ability, and others.)
- Think of a patient who has different needs than the patients in the film. What needs might you be missing in their care?
- What are the consequences of not addressing these unexamined burdens?
- What could be done to make these areas of concern part of routine assessment and care?
- How might discrimination or unexamined assumptions show up for these patients and families when addressing their physical and emotional pain? (Prompts: Perception of decreased cognitive ability of adolescent, lack of decision making capacity based on age, disability equates with lowered expectations for life, normal developmental needs are unimportant when a person is physically disabled)
- What is the impact of DMD on the family? How do we acknowledge and address this impact?
Application to Self and Institution
- What can be done better in your institution to raise awareness about these issues and to improve care? (Prompts: Educational sessions to raise awareness, involvement in of different disciplines in understanding these issues (i.e. child life, social work, chaplains), new care processes such as involvement of pain service or other discipline in developing treatment plans, etc.) Facilitator Note 1
- Regarding what we have discussed during this group, what change would you like to see/make at your home institution?