Moral Angst: The Heartache of Healers

DEDICATION AND ACKNOWLEDGEMENTS    MODULE DIRECTORY

Description

This module is designed to explore the internal responses (moral, emotional and spiritual) of clinicians who care for children with Sickle Cell Disease as they confront intense suffering and moral angst. Often unrecognized, these responses have a profound impact on the clinicians themselves, their interactions with patients, families and their colleagues.

This module typically takes around 95 minutes to complete. A more detailed module structure can be found in the SCD Facilitator’s Guide. For a sample module structure, click here.

Themes

  • Sadness
  • Helplessness/ Frustration
  • Betrayal/Anger among Professionals
  • Vulnerability/ meaning

Learning Objectives

  • Appreciate the importance of moral, emotional, and spiritual reflection for clinician well-being.
  • Acknowledge the interplay between clinician well-being and the care of patients and families.
  •  Identify personal and professional challenges in appropriately caring for patients and family members during times of intense suffering.
  • Develop awareness of one’s common responses to patient/family suffering and our own
  • Apply selected strategies to cultivate clinician resilience.

Introduction

This module is designed to explore the internal responses (moral, emotional and spiritual) of clinicians who care for children with Sickle Cell Disease as they confront intense suffering and moral angst. Often unrecognized, these responses have a profound impact on the clinicians themselves, their interactions with patients, families and their colleagues.

Film: Moral Angst: The Heartache of Healers

This film is also available in French, Dutch, Spanish, and Portuguese here.

Reflections and Discussions

Individual Reflection

  • What stands out for you in listening to these professionals discuss their experiences?
  • As you think about the participants responses, which comments do you identify with and why?Facilitator Note 1

Group Discussion

Sadness

A frequent emotion experienced by clinicians but rarely discussed is sadness:


“What I see families go through and kids go through with chronic illness and the lives they sometimes end up leading compared to the lives, aspirations, and hopes I have for my own daughter, that makes me very sad a lot of the times when I’m seeing children that aren’t doing well.” ~Pediatric hematologist


  • Have you ever been surprised by your emotions for a patient? What does this mean for you?
  • How does working with patients whose quality of life is compromised affect you? (Prompts: Sad, helpless, hopeful, inspired, etc.)
  • What other feelings are not openly discussed in our work with patients with SCD?

Helplessness and Frustration: Patient care

  • Reflect on your experiences in caring for patients with SCD and their families when you have experienced helplessness.
  • What feelings do you associate with this memory?  What did you notice yourself saying or doing in response to these feelings? (Prompts: anger, shutdown, abandonment, numbness, disrespect, frustration, feeling inadequate or ineffective etc.).Facilitator Note 2
  • What do you do with feelings of helplessness towards your patients/families?
  • How might this affect your care of patients/families or how they perceive you?

A common refrain by clinicians who are feeling helpless is: “Why are we doing this?” “Should we be doing this?”

  • When you hear yourself or your colleagues saying these words, what do think underlines these statements? (Prompts: Is your sense of right and wrong or your integrity as a person and a professional being threatened? Is your professional identity as a “good” nurse, doctor or other clinician being undermined? Are you being complicit in what you perceive to be moral wrongdoing?)
  • What are some ways you could address these feelings—individually or as a team?

In the film, clinicians often communicate their sense of helplessness by referring to it as “frustration”.

One source of frustration refers to patient’s lack of progress.

A nurse says: “Working in the infusion center 5 days Monday – Friday 9-5 and dealing with the population we do with SCD, it does come to a point where frustrating really is the best word that you can use. You feel sometimes there’s no progress.”

Another source of frustration relates to ineffective communication.

Adult hematologist: When I felt [frustration] the most is when I thought I communicated what I wanted to communicate, but what I communicated didn’t get heard…that’s the time you feel least adequate

A third source of frustration is when progress is “undone” by families.

Pediatric hematologist: Sometimes you feel like you’re trying to do everything right and think you’re on the road to helping a child and sometimes things do get undone by families. You just feel helpless”

  • In the clinician quotes above, what is the source of their helplessness/frustration? (Prompts: Distinguish between frustration at not being able to cure or effectively treat the disease and the frustration about the impact of social factors of the patient/family that impact the perception of progress.)
  • To what extent are these kinds of experiences familiar to you? 
  • How do you respond:
    • When there is lack of progress of your patients?
    • When communication is ineffective?
    • When the family members of patients seem to complicate the provision of recommended treatment?
  • How do you remain mindful of the social issues that impact your patient’s ability to follow through with proper treatment?
  • Are there other sources of helplessness or frustration have you experienced in the care of patients with SCD?
  • Share an experience where you have felt helpless or frustrated in the care of patients with SCD.  As you do so, notice what feelings arise.
  • On a piece of paper, jot down a few words or phrases: What might you say to your patient or colleagues about your frustration? What might you do in response to your frustration?
  • What do you notice about your responses?
  • How do keep negative feelings about patients or patient’s family members from affecting your ability to remain empathic or responsive to their needs? (Prompt: How have these experienced impacted your own well-being/quality of life?)

Anger/Betrayal Among Professionals

  • Think of a time when an interaction with a colleague or colleagues caused you to feel negative emotions. What specific emotions arose in you in response to this situation? (Prompts: felt angry, disrespected/disregarded, judged, unappreciated, betrayed, etc.)
  • How did you respond to these feelings? (Prompts: lashed out at the person, lashed out at others – including family members, gossiped, cried, felt resigned, shutdown, etc.).
  • Share the experience in a writing reflection, in dyads or small groups.

In the film, clinicians refer to several types of intercollegial interactions that resulted in negative emotions. One type of negative interaction occurs when other clinicians or ancillary staff criticize or negatively judge your actions.

Sophie: “If I get a call from a patient at an outside facility from a patient who wants guidance and the doctor recommends a treatment I completely disagree with, I can have that conversation and be completely ignored. I think that’s disrespectful. Being treated with a lack of respect for your knowledge and opinions happens more to women physicians than it does to male physicians. It’s hard to put into words, but this feeling of ‘Oh, it’s Dr. Lanskron. She has no spine and lets them walk all over her. She gives everyone pain medications.’ There’s that idea that it’s not thought of highly to do what I do for a living…”

Jeff: “Some of the only negative interactions I’ve had are with ancillary medical staff. People having different opinions about how they should be treated. From one perspective it looks like the thing to do is kick the kids out of the hospital, they’re malingering. It has been insinuated that I’m a bit spineless at times… ‘I can’t believe you’re letting them stay overnight again.’”

  • Feeling judged as “spineless” or having your competence questioned can lead to feelings of anger.  To what extent are these kinds of experiences familiar to you?
  • Have you experienced them personally or witnessed colleagues make or receive negative judgments of others? 
  • To what extent are these negative judgments related to the colleague’s gender, age, or ethnicity?
  • Are there assumptions about patients with sickle cell disease that may be projected onto their caregivers?  To what extent do you feel like your colleagues negatively appraise the patient population that you care for and, by extension, judge your care of them negatively?  What impact does this have on you?

Another source of negative emotions occurs when you judge colleagues as incompetent, uncaring or neglectful.

Sophie: “You hear the same story again and again, person went to ER, took labs, told the patient they weren’t in crisis. Although some of it’s frustration, it’s more anger because I think those providers should know better… although maybe my expectations are set too high. Even if you don’t see sickle, you pick up the phone, you call for help, you ask. It’s ok not to know, but it’s not ok to ask for help. That angers me.”

Vickie: “My anger as far as colleagues go is more so when I’m either receiving a patient from another department or transferring to another department. I’ve gotten reports in the morning and they say “he hasn’t had a dose for 3 hours”. Why? “He hasn’t gotten his long-acting.” Why? It’s more so anger where I clearly see a patient was neglected.”

  • To what extent are these experiences familiar to you? 
  • Have you ever found yourself negatively judging your colleagues? If so, what impact has this had on your own sense of well-being? (Prompts: I don’t want to come to work, I avoid interactions with those individuals, I isolate myself, I feel irritable all the time, I talk negatively about others when they are not present, etc.)
  • To what extent is there a tendency to make negative judgments about colleagues who occupy other roles or come from other disciplines, departments or institutions? What might contribute to this pattern of behavior?
  • One of the underlying themes of these quotes is the issue of respect between colleagues.  How would you describe respect in collegial relationships?  On a piece of paper, jot down a few words or phrases that reflect behaviors that you associate with respectful interactions.  What do these words or phrases suggest about how to cultivate respect?
  • What is the impact of negative emotions on respect? (Prompts: when I feel betrayed, my trust is broken.  When I no longer trust, I am less likely to cooperate, more likely to point finger and blame, more likely to create work-arounds, etc.)
  • What is the impact of disrespect and other negative emotions on team functioning and communication?
  • What could be done, whether personally, within your team, within your institutional culture, or between institutions, to strengthen respectful behaviors among colleagues?

Vulnerability/Meaning

One of the consequences of strong negative emotions like anger, betrayal and disrespect is the awareness of one’s own vulnerability.  Because clinical training emphasizes and rewards expertise and confidence, it is very difficult for clinicians to acknowledge their vulnerability.

  • Reflect on the situations in your own clinical practice that activate feelings of vulnerability.
  • Share one such experience in a writing reflection, in dyads or small groups.

In the film, clinicians refer to the impact of vulnerability on their own well-being:

Jeff: “You feel despite your best efforts the child isn’t doing as well as he or she should and it’s out of your control. I tend to dwell on those a bit and do feel guilty about things that don’t go right even if they weren’t under my control. So maybe as vulnerability laying in bed at night thinking over and over again of how I should have done that differently… I can get a little down during the day…especially when things aren’t going well.”

Sophie: “I think all clinicians worry about their patients and well-being. There are lots of nights I’ve not gotten good night’s rest because I’ve worried if my patient will make it through the night.”

  • In what ways have your own experiences of vulnerability affected your sense of personal or professional well-being?
  • How might you be able to engage more positively with your own vulnerability and use it as a resource for enhanced quality of interactions with patients and colleagues?  What would need to be in place personally or professionally to support this shift?

One of the antidotes to negative emotions (whether toward colleagues or patients) is to remember why you have chosen to care for patients with sickle cell disease.

In the film, clinicians refer to two sources of meaning in the care of patients with sickle cell disease:

Jeff: “Having children able to overcome their illness and go and have productive wonderful lives is something I’m always striving for. Taking kids who are having trouble and being able to work through that trouble and getting them back on track. I think that’s the most rewarding part of it…”

Sophie: “I enjoy the conversation and hearing about their lives and trying to solve the everyday sort of challenges they have… Everyday is a struggle and so the social issues of being able to get a job, keep a job, get food on the table, making sure there’s someone to take care of the kids when you’re in the hospital. All those social aspects become part and parcel of what I do everyday.”

  • What gives you meaning in caring for patients with sickle cell disease and their families?
  • Pause and reflect on the moments you have experienced that strengthen your resolve to continue in this work.
  • What intentional strategies or rituals might you use to remain connected to your sense of meaning in your work and use it as a resource for enhanced quality of interactions with patients and colleagues?
  • In reflecting on your overall experience in completing this module, what has it been like for you to discuss the impact caring for patients with SCD has on your personal and professional life?

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?

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