This module encourages participants to think about the variations of hope that may be experienced by patients, doctors, and families living with Sickle Cell Disease. It also focuses on quality of life and the uncertainty of living with day-to-day living with the disease.
This module typically takes around 3 hours to complete (broken up by 2 small groups and a break). A more detailed module structure can be found in the SCD Facilitator’s Guide.
- Reflections on Palliative Care and Quality of Life
- Pain and Suffering
- Recognize the range of individual perspectives on what constitutes “quality of life” for patients with SCD
- Explore the role of palliative care in enhancing quality of life for patients and family members
Structure of Small Group 1 (75 minutes)
Ask each person to introduce themselves in the following way: Please state your name, discipline or role (physician, nurse, family member, etc.), and home institution. Then, please respond to the introductory question below. Ask each person to “distill” their comments into 2 minutes (you will need to monitor the time).
“Please respond to the following question, keeping your responses to approximately 2 minutes: The most important thing I have learned from caring for people with potentially life threatening conditions like Sickle Cell Disease is….”
Reflections and Discussions
Ask each participant to take 3 minutes to individually reflect on the following questions (these questions will be in their participant guide).
- If you were defining “quality of life” for yourself and/or your family, what 5-6 components would be most important?
- What values underlie your definition of quality of life?
- When you were an adolescent, what meant the most to you regarding your quality of life?
- Now, think of being a patient with SCD. Would you have been able to experience these things?
- What would they have needed to be able to achieve their desired quality of life?
The remainder of this session will be devoted to exploring basic values regarding quality of life.
- What is the “essence” of the quality of life?
- What is the role of hope in quality of life?
- How can you, as a clinician, help adolescent patients increase their quality of life?
- How can patients, families, and clinicians have productive and comfortable conversations about definitions of quality of life and the implications for treatment?
- How might discussion of palliative care contribute to those conversations?
Agenda items: Refer participants to their agenda, noting there is a 15 minute break before the following small group session.
Break for 15 minutes.
Structure of Small Group 2 (90 minutes)
|Show Film 1: One Day at a Time
Application to Self and Home Institution
Film: One Day at a Time
This film introduces the viewer to the Green (Davon) and Bishop (Miracle) families. Davon and Miracle are patients of Dr. from Johns Hopkins Hospital. This film focuses on how patient, family members, and clinicians think about hope in terms of the diagnosis, prognosis, and daily living with Sickle Cell Disease. This film elicits several potential discussion points, including:
- Reflections on Palliative Care and Quality of Life for patients and family members
- The tension between Hope and Cure and how to identify constructive ways to navigate various understandings of hope and cure
- The role of palliative care in discussing quality of life for patients and family members
This film is also available in French, Dutch, Spanish, and Portuguese here.
Reflections and Discussions
Give 3 minutes for individual reflection on the film. Ask participants to write responses to the following questions:
- What are your initial responses to this film? Notice your feeling tone, body responses, and thoughts.
- What, if anything, surprised you?
- In our work, we see patients with SCD when they are in crisis or not feeling well. After watching the Film, did anything surprise you about the experiences of young people living with SCD?
- After seeing other parts/aspects of their life, what does that bring up for you?
- Reflect on the last session focusing on Quality of Life. What new insights, if any, do you have about what quality of life means for the patients in the film?
- How does this unpredictability affect patients, families and clinicians?
- What do you think it is like for patients who simultaneously live their lives day by day AND plan for future?
- What impact does unpredictability have on those who don’t plan for the future?
- What is the role of hope in managing the unpredictability of the SCD?
- What do you think the patients in the film, their families and clinicians are hoping for?
- How do these hopes compare with your own hopes for your patients?
- How do we navigate when we have different visions of hope?
- What do you think your role is in the offering of hope to patients and families? (Prompts: hope for better quality of life, alleviation of pain, cure, college, future, etc. What are some ways that clinicians can foster hope? What are some ways that clinicians may extinguish hope?)
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?
- How could you add to your practice ways to encourage hope?
Prep: Arrange chairs in a circle or around a table. Invite members to sit in the chairs in the circle or around a table. Place one page of flipchart paper on the wall near the circle. Have tape and post-it notes nearby.
Group Discussion Question: Currently, there is no “cure” for SCD – although BMT may be a promising treatment. What is QOL when cure is not possible?
Individual Reflection: Think of a time when you did or said something (besides a medication) that made a difference in the QOL of a patient with SCD. Write about this experience in silence.
Group Debrief: After the period of writing, ask participants to share a sentence that summarizes what they did or said.
Place the pre-selected images on the table or floor in the center of the circle.
- Pass out Post-it notes to each participant. Place images in center of circle.
- Invite group members to view the images and choose one that represents healing to them. Each person goes in turn until everyone has an image.
- In silence, ask participants to reflect on this question: “What quality about YOU as a healer do you need to remember in the care of patients with SCD?”
- Ask them to write one word that represents healing to them on their post-it note (can be related to the image, their answer to the question about their quality as a healer, or another word).
- Ask participants to share the word with the group.
- Ask each participant to tape their image and their post-it note word onto a flip-chart, creating a group collage. The post-it note can be placed on the collage – either on their photo or somewhere of their choosing.
- When everyone has placed their image and post-it note on the group collage, invite everyone to stand together in front of the collage to reflect on the image and what it evokes for them.
- End the session with a moment of gratitude to everyone for their participation in the activity.
Agenda items: Refer participants to their agenda, noting the next event is a Plenary on Palliative Care and how it relates to Sickle Cell Disease.
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