“Trust” focuses on the trust between patients, doctors, and family members. Participants will identify various challenges to maintain trust and explore how to use palliative care to encourage building trust.

This module typically takes around 90 minutes to complete. A more detailed module structure can be found in the SCD Facilitator’s Guide.


  • Trust and Respect
  • Communication
  • Decision-Making

Learning Objectives

  • Define trust and identify the behavioral components that can impact trust with patients, family members, and clinicians.
  • Examine behaviors that build and break trust.
  • Explore how the principles of palliative care can build trust in patient and clinician relationships.

De-brief Plenary: Ethical Landscape

  • What new insights did you gain from the Plenary on the Ethical Landscape?
  • What lingering questions do you have?


Presentation by Dr. Cynda Rushton

Film: Trust

This film raises issues related to patients with SCD that are most often addressed and those that are ignored or not assessed. This film elicits discussion points around the following themes:

  • Identify the range of challenges that are commonly discussed as well as those that are not as prominent in the care of children with SCD.
  • Appreciate how cultural humility is important in regards to patient experience and the treatment of distress.
  • Identify how palliative care can address physical and emotional pain experienced by patients and their family members

Reflections and Discussions

Individual Reflection

  • What are your initial responses to this film? What surprised you?
  • What does trust mean to you? Write your definition of trust.
  • What did you notice about your thoughts, feelings, body sensations? What do these tell you about yourself?
Group Discussion

The film presented various views of trust regarding the patient, parent/family, and professionals.

  • What does trust mean to patients and families in the film?
  • Patient/Family member question: What does trust mean to you/your child with SCD?
  • What are the various things that patients trust us to do?
  • What things do you as clinicians trust patients to do?
  • Whose responsibility is it to build trust? Patient or clinician?


Patients, family, and professionals may discuss their frustration with the system, but the system mostly consists of “us.” For this discussion, we want to focus on the behaviors of both patients/families and clinicians that build and break trust.

  • What clinician behaviors build trust between patients and clinicians? Refer back to the plenary session. Focus on the behaviors.

Clinician behaviors that build trust might include:

  • Following through with treatment plans
  • Answering questions honestly
  • Inquiring about preferences
  • Admitting what is not known
  • Setting realistic expectations
  • Empowering patients to advocate for themselves
  • Respectful communication
  • Listening
    • What patient/family behaviors build trust between patients and clinicians?

Patient/family behaviors that build trust might include:

  • Honest appraisal of their symptoms and responses to treatment
  • Following through with treatment plans
  • Speaking respectfully
  • Recognizing own limitations
  • What behaviors break trust between patients and clinicians?

Behaviors that may break trust by patients: An example could include situations in the hospital where each doctor, nurse, or clinician that sees each patient asks them the same questions repeatedly.

  • How might that be interpreted by patients? Why might this example be particularly important in this population?

Behaviors that may break trust by clinicians: Examples might include not returning calls, dismissing concerns, disrespectful interactions, impatience, not listening, unclear treatment plans, paternalistic attitude.

  • What are some action-oriented responses/practices to build trust between clinicians and patients (and institution) rather than just get angry at the system?

In the film, patients discussed their desire to be listened to and acknowledged there is no cure and they don’t expect doctors to “fix” them.

  • In light of this acknowledgment, what would successful treatment look like?
    • What is realistic treatment to expect?
      • There can be a sense of failure on both doctor’s part and patients’ part when pain isn’t prevented.
      • What would cause that sense of failure for the clinicians?
      • What emotions might a patient experience towards their invested clinician if they are non-responsive to treatment?
        • What would cause that sense of failure for patients?
  • What role can palliative care play in listening to patient, parent, caregivers?


  • What role does anger play in patient/clinician relationships?
  • What are the possible responses to being treated badly for patients, family members, and clinicians? (Prompts: Potential responses include:
    • We take it out on each other
    • Take anger personally
    • Forget about the power imbalance between staff members and between patients and staff)
  • How does unexamined anger impact the trustworthiness of communication?


  • What assumptions might we make about patients who come from diverse backgrounds?
    • Do you think anyone in the video is at any greater risk of being stigmatized?
    • If so, why?
    • What are the consequences of failing to honor or respect the diversity and cultural context of our patients?
  • In several studies, patients and clinicians have brought up the possibility of racial discrimination. To what extent does racial discrimination impact the quality of care provided to patients with SCD?
    • What impact do these assumptions have on our communication and relationships with patients and families?
  • What assumptions do you think patients/families make about clinicians?
    • What are the consequences of these assumptions on the relationships patients/families have with clinicians?

Adolescent Decision-Making

In the film, Davon states he knows himself and his body. His Grandmother says, “You have a voice,” when referring to his treatment.

  • How do you honor what patients and parents know about their child and their family while making medical decisions?
  • What concerns do you think need to be heard from each individual? Clinicians, patient, parent?

Use the following matrix to explore the concerns.

  • When thinking about the role of adolescents in treatment decision making, what are the concerns that need to be considered? (Prompts: Child, family, situational factors; Goals of including adolescents; Informed Consent issues; Developmental and cognitive levels of adolescents)

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?

Agenda items: Refer participants to their agenda, noting the next event is ­a Plenary on Adolescent Decision-Making.