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.
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.
- Exploring/Challenging Assumptions
- Values and Decision Making/Perspective Taking
- Impact of condition on siblings, family cohesion, marriage and parental well being
- Adolescent’s role in decision making
- Communication and Continuity of Care
- Being a Good Parent
- Identify the challenges surrounding actual and anticipated progression of disease including the potential of death, and opportunities for enhanced communication and advanced care planning.
- Uncover the hidden assumptions that clinicians make about each other and the patients and families they care for.
- Develop personal capacities for perspective taking with patients, families and colleagues.
- Recognize and address the ethical challenges in weighing the benefits and burdens of various medical technologies and their unintended consequences for patients and families.
Film: On the Edge
This film is also available in French, Dutch, Greek, Spanish, and Portuguese here.
Reflections and Discussions
Give 2 minutes for individual reflection on the film. Ask participants to write responses to the following questions:
- What stands out for you in this film?
- What connections do you make to your own experience and why?
- As you reflect on the film:
- What resonated with you?
- Did anything surprise you?
- Was there anything that made you uncomfortable? If so, what contributed to making you uncomfortable?
- What do you imagine Ben was experiencing during his initial decompensation?
- What struck you about Jo, Tim, and Megan’s initial experience of Ben’s LTE? (Prompts: Explore the impact of not knowing whether Ben would survive the trip to the hospital on all members of the family; explore the role of uncertainty and fear in Tim and Jo’s communication (or lack there of) with each other that created silence and isolation; explore the fears and uncertainties that Ben and Megan were experiencing.)
One of the common features of an admission of a patient with a chronic condition to the ICU is that the ICU clinicians rarely know much about the patient’s history, disease trajectory, family context, or prior decisions. Incomplete information can create gaps in understanding and interpersonal conflicts.
- What assumptions are you making about any of the characters in the film (Ben (patient), Jo (mother), Tim (father), Megan (sister), Dr. Crawford, Dr. McGinley, Beth Wieczorek (nurse practitioner)? Be as specific as possible. (Prompt: Explore both positive and negative assumptions—list them.)
- What do you notice about these assumptions? Reflect on other cases where you may have made similar assumptions. What insights can you draw from those experiences and your own reaction to the film? Share your reflections with a partner.
- What assumptions do you think might be made about Ben’s condition and his treatment? (Prompt: Imagine the kinds of statements that clinicians may make during shift report, handoffs, or rounds that reflect these assumptions.)
Beth: “Healthcare providers were shocked by his weight and how thin he was, but really were more shocked that the healthcare workers had not been speaking to the family about this issue prior to that…. It’s very possible those conversations were taking place, but we weren’t aware of that, but still we had a reaction”.
- If you had seen Ben come into the ICU at his weight of 55 lbs., what kinds of assumptions or judgments might you have made about his weight? (Prompt: Clinicians may assume: The neurologist didn’t suggest a G-Tube; the family was in denial about his condition; the parents are neglectful and irresponsible, the parents weren’t willing to take on the additional burden of care, etc.)
- How might these judgments/assumptions affect the care of Ben and his family?
- How might they affect collegial trust and communication? (Prompt: How do you imagine that Dr. Crawford and Ben’s parents might react to feeling misjudged by the ICU team?)
Dad: “We resisted Dr. Crawford’s initial recommendations to start a direct stomach feed because we didn’t want to put him under another operation after a couple of other major operations… and I didn’t want to go to that next level of care…”
- What is your appraisal of Tim’s statement? Notice the tone of your response. Positive, negative, neutral?
- What do you notice about your own responses when others (patients, families, other clinicians) make decisions that are different from your own?
- What are some ways that the tendency to make negative assumptions and judgments can be prevented or overcome? What practices or systems need to be in place to challenge assumptions and judgments? (Prompt: Routine assessment of prior communication with patient/family and other specialties, informal conversation, systematic inquiry in rounds, routine family meetings, forums to explore assumptions and judgments etc.)
Values and Decision-Making/Perspective-taking
This film highlights the importance of understanding the benefits and burdens of caring for a boy with DMD. Perceptions of benefits and burdens vary based on one’s perspective.
Each member of Ben’s family shares some of how Ben’s condition has affected them.
- What is the impact of the condition and technological interventions on each family member?
The technology that saved Ben’s life also brought associated costs in quality of life and independence. The feeding tube, for example, has had a positive impact on Ben’s weight and overall health (e.g., reduction of pain) but a negative impact on home life burden (i.e., having to manage his feeding tube, he is heavier to lift and carry, etc.). The benefits and burdens of his treatment extend beyond his physical care to the impact on the quality of life of each of his family members—their relationships, home life, school experience, etc.
“I said thank you for your information, but what you’re saying is major life-changing stuff. I have to prepare Ben, his sister, his father, the school, his friends because up until 2 weeks ago, Ben was just a kid in a wheelchair and that was bad enough for him. It takes from 5:30 – 7:15 to get him ready for the day.” ~Jo (Mom)
- What insights can you gain from this statement by Ben’s mother?
- What are some other trade-offs in terms of benefits and burdens for Ben and his parents? (Prompt: Ben has lost arm function so he can’t feed himself anymore. Cough assist and ventilator support requires much more involvement by family members.)
- What might some of the tradeoffs be in terms of family cohesion, marital relationship, and parent wellbeing? (Prompt: Consider the impact of the parents rarely seeing each other during the hospitalization because they live so far away and one of them always had to be home to care for the other child and home responsibilities. Consider the impact of the hospitalization and discharge with new technology on family stress.)
- To what extent should clinicians proactively recognize and respond to the impact of hospitalization and chronic condition on parents and family?
Ben’s Perspective (Adolescent Boys Living with DMD)
- What do you think Ben is thinking and feeling about his illness, his prognosis, and his experience with the health care system as a result of his ICU admission? (Prompt: Angry, sad, disappointed, scared, anxious, isolated, helpless, ashamed, trusting, grateful)
- To what extent do clinicians attend to the thoughts and feelings of children and adolescents with Duchenne Muscular Dystrophy when they are hospitalized? What role does or should age/maturity play in how we attend to the needs of hospitalized adolescents? (Prompt: As Ben watched his 02 stats drop on the monitor, his anxiety increased because of his awareness of the tension present for the medical team regarding the drop in oxygen. No one (except Jo) seemed to notice that his anxiety contributed to his breathing difficulties.)
- Whose role or responsibility is it to understand a child’s personal thoughts and emotions? (Prompt: everyone? Nurses, social workers, child life specialists, doctors, psychologists?)
- What would help clinicians to be able to recognize and explore a child’s personal thoughts and emotions? (Prompt: Routine assessment, taking time to understand and inquire into the experience of the patient, explaining what is happening, giving the patient some control over their environment etc.)
- To what extent would orienting patients like Ben to the technology, sights and sounds in the ICU influence his anxiety? (Prompt: Explore how to overcome rote explanations in order to individualize information to the unique needs of the patient.)
Ben says: “It would be nice to be involved in something that has to do with me because I know more about my body than anyone else does… I just felt like I couldn’t trust anyone. I thought I was the only one who could help myself.”
- What kind of role does or should Ben have in decision-making about his care?
Assessing Decision Making Capacity
- Given what you observed about Ben, to what extent does he have decision-making capacity? How would you assess this?
- What are some ways that we can involve Ben more fully in communication and decision-making about his care? (Prompt: Explore the missed opportunities to engage Ben and other boys like him more fully.)
- Given the child’s developmental and cognitive capacity, they may participate in a variety of ways. On the continuum below, consider where there are opportunities for involving Ben more fully.
Impact of Cognitive Impairment
Considering that cognitive impairment can accompany DMD, the capacity for adolescent decision-making can vary.
- How does or should cognitive impairment affect adolescent’s role in decision-making and advanced care planning?
- Even normal development can be stunted in terms of independence and decision-making. Achieving independence and autonomy for children with chronic illness is complicated because they are reliant upon their parents for basic needs.
“To put a lot of things on my parents, I don’t really like. It doesn’t seem fair on them. It doesn’t seem fair on me. It’s just a horrible feeling. Kinda frustrating to know that I lost more strength from being in the hospital, I have to have people feed me… It just makes me angry sometimes.” ~Ben
- To what extent should an adolescent boy’s physical and emotional dependence alter his role in decision making? (Prompt: Not at all; he is not independent and his parent’s interests should be given more weight; he is not in a position to override his parent’s decisions; he should not have a significant role.)
Siblings of boys with DMD experience their own challenges.
Megan: “A lot changed when he got home. It was more hectic. I just didn’t want to be home so I spent Thanksgiving at a friend’s house and away from my family because I didn’t want to be with them because they were all about him. I felt left out. They were yelling and it was really just hectic. It was a catastrophe.”
“I can’t do stuff with my siblings. I can’t go play sports and throw a ball around with them like my friends can with their siblings.” ~Megan
Megan: “I thought he was going to die.”
- To what extent do clinicians attend to the thoughts and feelings of siblings of children and adolescents with Duchenne Muscular Dystrophy?
- Whose role or responsibility is it to understand a sibling’s personal thoughts and emotions? (Prompt: everyone? Nurses, social workers, child life specialists, doctors, psychologists?)
- In what ways should Megan’s perspective be taken into account in determining the best course of treatment for Ben? (Prompt: Not at all; should be considered in the context of the whole family; should have significant weight.)
Dr. Crawford: “DMD is relentlessly progressive. We expect things to be lost every increment of time. Something has to be given away…”
- What feelings is Dr. Crawford expressing? What are you feeling in response?
- Given this reality, how do you address your own feelings about the reality of the progression of DMD? (Prompt: Explore the effect of cumulative loss on clinicians’ effectiveness in working with children and families where the options for benefit are limited by the disease trajectory.)
In response to Ben’s life threatening event, Dr. Crawford says: “Ben’s parents were not ready for this. They were scared… I don’t think you can ever prepare somebody for having your child throw up blood and look deathly ill. There’s no such thing as preparing for that.”
- To what extent do you think it is possible to prepare patients and/or family members for the kind of life threating incident described in the film? (Prompt: Explore the difference between preparation for a series of conceivable life threatening events at some point in the future, and being able to accurately predict and prepare for a specific life-threatening event? In Ben’s case, it was predictable that he would have a life-threatening event that involved respiratory distress, but it was not as predictable that he would have a life-threatening event that involved throwing up blood. Dr. Crawford may be correct in his assertion that you cannot prepare for the latter but we can provide anticipatory guidance regarding the former.)
- If this is true, what kind of preparation would address both their informational and emotional needs?
- To what extent do clinician’s fears and emotional responses:
- Influence their appraisal of parental readiness to consider the possibility of a LTE and/or the need for more aggressive interventions?
- Influence their ability to be responsive to the child and family’s experience?
- Influence their reasoning about appropriate goals of care?
- What do you think are appropriate goals of care for Ben? Why?
- How do you weigh the benefits and burdens?
Beth: “Placing an artificial airway will change the child’s life, but I don’t know that many providers really understand what that change means…”
Dr. Crawford: “I’m not gonna torture kids with too much stuff in order to sustain some minor function into the future. This is the balance, I think, a clinician has to make: what are the discomforts and what burdens am I going to place on his life now in order to sustain what functions and abilities later on. Is the juice worth the squeeze? Where is the balance made most properly?”
Dr. Crawford: “In retrospect, it would have been nice to have it in, but the only way I was going to move it along was to talk directly to him…., but ultimately it’s consent and he has to buy in and say I agree with you.”
- What underlying meaning, values, or goals of care may lead patients, parents/caregivers, and clinicians to different decisions in care?
Beth: “The challenge for those of us in the ICU is to know that Ben may end up in the ICU without technology decisions being made and it’s not because they didn’t try, but sometimes it has to be made in a life-threatening, critical situation than what we would like.”
- How does the urgency to respond to life threatening events in the ICU, impact the weighing of benefits and burdens and ultimately treatment decisions?
Continuity and Communication
One of the particular challenges of an ICU admission for a boy with DMD is recognizing and overcoming barriers to effective communication and facilitating continuity of care.
Dad: “Every shift brought a different nurse, therapist, different team of doctors. We needed some continuity. The continuity was us.”
Mom: “It was getting very confusing. One team was saying one thing, one team was saying another… I felt very alone.”
- What stands out for you in listening to Ben’s mom and dad describe their experience with a lack of continuity?
- What do you think contributes to patients and parents feeling alone or untrusting of healthcare professionals? (Prompt: Ben’s mother discovered that it was possible to request a family meeting to address her concerns about the lack of continuity and inconsistent communication among the team.)
- In what ways can clinicians partner more effectively with parents to understand their needs for information, participation in decision making and support?
- What impact does the lack of continuity among the teams and specialists have on you as a clinician?
- How might this lack of continuity for the patient and family affect how they respond to you as a clinician or how they respond to decisions they need to make?
- What do you find most challenging about communicating with families and children with chronic conditions like DMD, particularly during LTE’s? (Prompt: Uncertainty about prognosis, parents understanding, goals of care; conflicts between parents and clinicians; lack of time; etc.)
- Are there differences among the disciplines (physician, nurse, social worker, etc.) in communicating with children and families about LTE’s? If so, what is the nature of these differences and what might explain them?
- What do you think enables patients and parents to feel that their perspective and preferences are being shared with practitioners in this kind of situation?
- What do you think contributes to patients and parents feeling that they are being heard, and trusting that healthcare professionals will act in alignment with patient/family preferences?
It is our ethical responsibility as healthcare team members to communicate appropriate benefits and burdens regarding medical decisions with families. One of the challenges conveyed by this film is how to reconcile potentially competing clinician obligations to give information that is balanced in terms of benefits and burdens and also aligned with patient/family goals.
Brian: “There was never a conversation of you have to do this, but here are the options. Our job is to discuss those options – the benefits to them, but also the downside.”
- What principles/values should guide our actions in these cases?
Being a Good Parent
Parents of a child with a chronic, life-limiting condition experience the full range of emotions. These emotions, though perhaps heightened during a hospitalization for a life-threatening event, are always present.
“Especially in times when the routine (of caring) gets too hard to bear and I think I’d be happier if it was over and if I didn’t have to do it…” ~Tim (Dad)
- What thoughts and feelings do you think Tim is communicating?(Prompt: Sadness, anticipatory grief, anger, guilt, resentment, anticipatory relief etc.)
- To what extent to any of these thoughts or feelings surprise you? Why or why not?
- Do Tim’s thoughts fit with our assumptions about being a “good dad”?
Mom: “I felt like I was drowning. I could never judge, ever again, say, ‘How could that mother walk away from that family? How could that father just walk away from that child?’ Because the effects are so deep, the foundations of my family are cracked. The buildings haven’t fallen down yet, but the foundations are cracked. I’m trying really hard to make sure it doesn’t go any further than that. People say to me you’re such a strong woman, I don’t know how you do it. Well that puts a big burden on my shoulders.”
- To what extent do Jo’s thoughts and feelings surprise you? Why or why not?
- To what extent do Jo’s thoughts fit with our assumptions about being a good mother?
- How did you feel “witnessing” her reaction? What meaning do you attach to her strong emotional expression? (Prompt: sorry for her? Scared for her? Like you were intruding on her private experience? That she’s not at strong as she appears; she’s decompensating; she’s decompressing her feelings, etc.)
- To what extent does the last scene of the film alter your thoughts about whether Jo is “a strong woman” or a “good mother”? (Prompt: What are the consequences of labeling people as “strong” or appraising them as “good” parents?)
- What do you think Ben and his family would feel that it is important for health care professionals to know about them as a family and as individuals?
- What additional skills and support do clinicians need to be able to know the unique vulnerabilities and needs of their patients and families? (Prompt: Explore how clinicians might be able to expand their repertoire of skills to partner with families in “healing their cracks” even if we are unable to cure their disease.)
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?