“Listen to Me” examines the important complexities of communication among patients, doctors, and family members affected by Duchenne Muscular Dystrophy, including the role of adolescent decision-making, informed consent and the boundaries of parental and clinician authority.
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.
- Boundaries of parental and clinician authority
Learning Objectives of this Module
- Recognize the importance of empowering adolescents and parents to make choices regarding day-to-day as well as long-term concerns regarding medical treatment.
- Acknowledge that caring individuals may differ in their assessment of what is in the child’s best interest, because such assessments are not simply matters of fact, but opinions based on experiences and personal values.
- Recognize the significance and complexity of practitioners sharing the moral burden of decision making with parents in the palliative care setting.
The goal of this session is not to debate the effectiveness of spinal surgery as a treatment for scoliosis in patients with DMD. Rather, the discussion about spinal surgery is used to explore the boundaries of informed consent—particularly the unintended consequences of a treatment—with patients and families. Alert participants that informational resources are available, but that the focus on the discussion will be on the issues that arise from their experiences with decision making and informed consent.
Film: Listen to Me
This film depicts patient, family, and healthcare team members discussing the importance of listening to each other as they discuss their personal experiences in relation to the spinal fusion surgery. The point of the discussion is not to debate whether spinal fusion surgery is the appropriate recommendation for boys with DMD but rather to explore the extent of communication about various treatments and the unexamined aspects of informed consent—including the role of teens in decision making.
Ben and Dustin both experienced significant negative repercussions from this surgery. The varying viewpoints of each individual elicits several potential discussion points, including:
- Patient/Family/Healthcare Team Communication
- Adolescent Decision-making
- Boundaries of parental and clinician authority
- What are your initial responses to this film? What surprised you?
- What are your thoughts about what being listened to means for patients, parents, and clinicians in the film?
- What does “listen to me” mean for patient? Family members? Professional caregivers?
Shared Decision-Making, Different Concerns:
Notice that in Film 2, each individual says something different about the spinal fusion surgery:
Doctor: “I push pretty hard – I can’t bear to see these kids the way they were”
Patient: “I used to be able to do… I didn’t know I wasn’t going to be able to…”
Parent: “They didn’t tell us this was going to happen…”
- What concerns do you think needed to be heard from each individual? Doctor, patient, parent…
- To a parent in the group:
- What do you think this parent was concerned about regarding spinal fusion surgery?
- How does deciding to have the surgery align with your perception of being a good parent?
“Parents know their child better than the doctors know. The doctors might know the disease, but they don’t always know the disease pertaining to the child. A good doctor, in my opinion, is someone who listens to the parents.” – Jo (Ben’s Mom)
- How do you honor what parents know about their child and their family while making medical decisions?
- Is it possible for parents to represent the best interests of their dependent children and make decisions that conflict with medical advice?
- What does “shared decision-making” mean in this scenario?
- How much should we push patients and family members, in general? When is it ok to push? How do we know when to push or not push?
Jo (Mom) says in the film: “When I got to look at Ben’s medical records years later, the things that were written about me in those medical records were not very flattering– over-reactive, overly emotional, demanding.”
- What arises for you when you think about families you cared for who you might have perceived as over-reactive, overly emotional, or demanding?
- When parents start to feel “demanding” to you, what do you start to think about yourself? What kinds of feelings do you associate with those interactions?
- In those situations in which you have perceived families behaving this way, what do you think they were needing?
- To a parent in the group: Have you ever been in that situation? Have you ever felt you were being seen in a negative light when you were trying to do the “right” thing or be a “good” parent? What were you wanting? What would have helped in those situations? What was NOT helpful?
- How do we acknowledge someone trying to be a “good parent” when we feel they may be “demanding” or displaying behaviors that bother or annoy us?
- How do we, as professionals, not “turn off” regarding parent concerns when our job is to constantly address and dismiss concerns?
- What do clinicians need in these situations? A good place to acknowledge their suffering and distress in a compassionate way.
Shared Decision-Making: Pushing the Limits:
In the film, Dr. Crawford says: “Everybody’s got to talk to everybody. Everybody has to have the ability – that means the resources and the time and the support, to be able to talk to each other. And then we also have to have the humility and forgiveness in letting other people make mistakes, because all the time I forget this or mess up that and I know the moms do and certainly the kids mess up and doctors and therapists do, too.”
- To what extent does your institution’s team communicate about the complexity of treatment decisions?
- What helps you to you listen to what the parent is saying to you when it is at odds with your advice?
- When parents make decisions that are at odds with your advice, what do you typically do in that situation? (Prompts: Give more information, postpone intervention, let go of your agenda…)
- What would help you to be able to remain in the relationship with the parent in the midst of conflict?
- At what point are you able you let go of your own concerns/agenda?
- How do you balance letting go of your concerns and wanting to prevent mistakes or cause harm?
Application to Self and Institution
- Regarding what we have discussed during this group, what change would you like to see/make at your home institution?
- What would facilitate those changes? What are some barriers?