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 Duchenne Muscular Dystrophy.
- Pain and Suffering
Learning Objectives of this Module
- Identify a range of challenges that practitioners face in regard to communicating openly about the anticipated death of a child or adolescent, and ways that such challenges may be addressed.
- Recognize the importance of respecting adolescents by disclosing information about the nature and severity of their illness to them.
- Understand the emotional challenges inherent in bearing witness to the experience of children, adolescents, and families in these difficult conversations.
This session raises one of the toughest challenges practitioners have in pediatric palliative care, i.e., dealing directly with children who are dying and who want/need to talk about their own dying. The session challenges participants to reflect upon their own experience with these difficult conversations.Facilitator Note 1
Group discussion will likely also raise important issues about intimacy between practitioners and children/families, leading to discussion about professional boundaries and the challenge practitioners face to be authentic, intimate, and “professional” simultaneously.Facilitator Note 2
During this session, participants will be referring to the handout on DMD Trajectories. This session focuses on the issues that arise in recognizing that DMD is a life-limiting disease.Facilitator Note 3
Film: An Uncertain Future
This module raises one of the toughest challenges practitioners have in pediatric palliative care, i.e., dealing directly with children about the likelihood of dying and who want/need to talk about their own dying. The session challenges participants to reflect upon their own experience with these difficult conversations. Group discussion will likely raise important issues, including:
- Communication about treatment options and anticipatory guidance regarding the disease trajectory
- Decision-making about treatment options and the role of teens in these discussions
- Challenges that practitioners face in regard to communicating openly about the anticipated death of a child or adolescent, and ways that such challenges may be addressed.
- The importance of respecting adolescents by disclosing information about the nature and severity of their illness to them.
- The emotional challenges inherent in bearing witness to the experience of children, adolescents, and families in these difficult conversations.
This film is also available in French, Dutch, Greek, Spanish, and Portuguese here.
Reflections and Discussions
- What are your initial responses to this film? What surprised you? What did you take away from the film?
- What did you notice about your thoughts, feelings, body sensations? What do these tell you about yourself?
- What differences did you see in talking about the future from the perspectives of patient, parents/family members, and professional caregiver?(Prompts: What is the perspective of each? What do each of them think the other one knows (Parent, patient, caregiver)? What do they know themselves?)
- What are the implications of having those different perspectives? (Prompts: Impact on family relationships, treatment decisions, treatment adherence, or attitudes?)
- What is your role as a professional caregiver in a situation like this when family members have different views regarding hope and cure?
Thinking about Living and Dying:
“You know, it’s possible to hold two realities in your head at the same time. One is the hope and one is the reality of what’s going on.” – Dr. Crawford
- What is your response to this quote? Does it resonate for you?
- How does this quote relate to the definition of palliative care discussed in the plenary session?
“I think trying to be a human being in the condition where there’s nothing medically can be done, that’s where the human spirit is the most intense. Where’s it’s expressed the most.” – Dr. Crawford in Many Faces of Hope
- What is your response to this quote? In what way does this quote resonate with you?
- What determines a clinician’s capacity and willingness to be present at times like these?
- What is the clinician’s role in the patient/family discussions about death?
- It is difficult to give news with serious consequences or that evokes strong emotions. As a clinician, how comfortable do feel about your ability to give difficult news in a way that patients/families are able to engage in dialogue about the issues with you?
- How can we talk about death in a way that is not disempowering and hopeless?
- How can we balance truth-telling and hope in the communication process?
- What is the role of clinicians in informing, educating, or encouraging parents regarding options for the child’s life that may not be being actively pursued or expected? (Prompts: school, college, social activities, etc.)
- How can we encourage patients and parents to live their lives as fully as they can?
- What is the clinician’s role in the patient/family discussions about the trajectory of the illness?
- How do you, as a clinician, educate the child and/or family about the disease and possible trajectory?Facilitator Note 4
- What are some possible reasons that parents might refrain from telling their child his/her prognosis?
- Ethically speaking, what do you see as at stake?
- What are the harms that could be caused by not telling patients the truth about their condition?
- What are the benefits that full disclosure might bring?
- Are there any downsides to full disclosure?
- How do you balance what they need to know vs. don’t need to know?
- What is not being communicated with patients, families, and other clinicians? What is left unsaid?
Application to Self and Home Institution
- Regarding what we have discussed during this group, what have you learned about your own relationship to end of life care?
- Regarding what we have discussed during this group, what change would you like to see/make at your home institution?Facilitator Note 5