Many Faces of Hope

DEDICATION AND ACKNOWLEDGEMENTS    MODULE DIRECTORY

     

*Left: Ben; Right: Ben and Morgan

Description

This module explores the different types of hope experienced by patients, physicians, and family members. Participants will brainstorm creative methods of encouraging hope in their practice.

This section typically takes between 45 minutes and an hour to complete. A more detailed module structure can be found in the DMD Facilitator’s Guide. For a sample module structure, click here.

Themes

  • Reflections on Palliative Care and Quality of Life
  • Hope
  • Tension between Hope and Cure

Learning Objectives

  • Explore the role of palliative care in discussing quality of life for patients and family members
  • Understand differences and similarities in thinking about hope and cure for patients and family members
  • Identify constructive ways to navigate varying understandings of hope and cure

Film: Many Faces of Hope

This film introduces the viewer to the Rivers and Colgin families. Ben and Dustin are patients of Dr. Tom Crawford 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 Duchenne Muscular Dystrophy. 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, Greek, Spanish, and Portugese here.

Reflections and Discussions

Individual Reflection

Give 2 minutes for individual reflection on the film. Ask participants to write responses to the following questions:

  • What are your initial responses to this film? What surprised you?
  • What did you take away from the film?
  • What are your thoughts about what Quality of Life means for patients in the film?

Group Discussion

Visions of Hope:

Explore the questions below with members of the small group by drawing the following matrix on the flip chart and filling in the boxes with group member’s responses.

many faces of hope chart2

  • From the film, each member (clinician, patient, family member) seems to have different ideas about what hope means or different things they are hoping for… What are they?
  • How do we navigate different visions of hope?
    • One way of understanding the differences in how we view hope is based on Keene and Serwint’s research (Keene, Reeder and Serwint, 2009) in which they explored the varying views of hope according to parents and clinicians. The study found that parents identified their role as bearers of hope which in turn was a cornerstone of decision making. Health care professionals tended to view hope as related to a positive outcome and reported difficulty in maintaining hope in the face of prognostic data. All participants noted the changing nature of hope and its implications for care. The tension between maintaining hope and accepting the reality of the prognosis may lessen when acknowledging that parents see their role as bearers of hope. Supporting families around the changing nature of hope may allow health care professionals to partner with parents while maintaining honest communication. How does this insight impact the way you work with families around the issue of hope?

“Dr. Crawford told me that even though I’m in a wheelchair, I can do anything I want to. That made a world of difference.” ~Dustin


    • What do you think your role is in the offering of hope to patients and families? (Prompts: Hope for better quality of life, cure, college, future, etc.)
    • How do these hopes compare with your own hopes for your patients?

Hope and the Cure:

In the film, Dr. Crawford says, “Sometimes hope can be a cudgel that parents are pounding themselves and everyone else with saying, ‘We can’t give up because of the hope that you know the MDA or other people are gonna come up with a miracle.’ And it’s like, ‘Yeah, but in the meantime we’ve got some real suffering going on and how much are we going to make these kids suffer as a consequence?”

  • What categories of treatment do you think patients and families hope for? (Prompts: cure for the disease, relief of certain symptoms, addressing issues related to quality of life or emotional/physical pain –
  • In what ways do your values about hope affect your assessments regarding treatment, including cure for patients with DMD?
  • How do we navigate when we have different visions of treatment?
  • In what ways does the tension between multiple visions of hope and cure impact QOL for patients, family members, and physicians?

“It makes me mad.”


In the film, Dustin’s mom says the above quote when referring to messages she’s received regarding a cure.

  • How do you/we manage expectations regarding hope and cure through our communication with patients and families?
  • How do we assess how our message is being received by patient families?
  • If your team is involved in clinical trials, how do you manage keeping up hope/energy for participation while also helping to ensure that families have realistic expectations for trial outcomes?
  • What role can palliative care efforts play in responding to the tension between hope and cure?

Application to Self and Institution

  • How could you add to your practice ways to encourage hope?
  • Regarding what we have discussed during this group, what change would you like to see/make at your home institution?

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