This module is designed to explore the internal responses (moral, emotional and spiritual) of clinicians who care for children with Duchenne Muscular Dystrophy 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.
- Showing your humanness
- Collegial betrayal – inter-professional anger.
- 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.
- Apply selected strategies to cultivate clinician resilience.
Film: Moral Angst: The Heartache of Healers
This film is also available in French, Dutch, Greek, Spanish, and Portuguese here.
Reflections and Discussions
- 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?
Show Your Humanness
The physical therapist says, “Touched by death more than expected…”
- Have you ever been surprised by your emotions for a patient? What does this mean for you?
- Participants in this film remind us how challenging it can be to stay connected to families during times of intense suffering.
- In reflecting on your own experience, what sensations do you notice in your body? What emotions arise? What thoughts do you associate with your experience? What do you make of these?
Reflect on the following quote by a pediatric neurologist.
“No better way to connect to parents is this humanizing… To show that this is difficult for you – there’s nothing more powerful.”
- Do you agree? Why or why not?
- What does “being human” mean for you?
- In what ways does exposing your humanness to patients and families support your role as a clinician? In what ways might such exposure undermine your role?
- What are the potential benefits and harms of showing your vulnerability as a clinician? Probes: Showing vulnerability as a way to connect with patients; appearing invulnerable can disconnect us from our humanness.
- Do you feel that patients want to see your vulnerability or do they want to see you as strong and knowing all the right answers?
- Do you feel it is in the best interest of the patient/family to show your vulnerability? Why or why not?
“Need balance so you have bedside manner, but competence.” (Physical Therapist)
- What does this statement mean to you? Probe: What does balance mean in this context?
- There are different ways of being with patients and families (Probe: Examples: Strong, empathic, vulnerable, distracted, engaged, caring, humble etc.)
- In reflecting on your own practice, do you notice a pattern of your own comfort in showing your humanness to patients and families? If so, share your experience of a specific instance where you shared your humanness or when you did not. (facilitator note: this can be done by written reflection if you are alone, in dyads or in small groups.)
- What does it mean to balance different ways of being with patients and families? What is potentially in conflict? (Balance of vulnerability and confidence)
“I want to make certain we keep human life going in the face of… technical proficiency. We get things done absolutely perfect but we miss the fact that these kids aren’t gaining as a consequence… [when we lose sight of our goal], this technical proficiency is empty.” ~Dr. Crawford
- Can you identify any situations from your own experience where there was a tension between technical proficiency and humanness? What were the consequences for you personally? Professionally? (Probe: Dr. Crawford implies that without our humanness, our technical proficiency is meaningless and makes us feel empty—to what degree can you identify with his experience?)
“The most important thing… is honesty, in terms of what you’re thinking, what you’re feeling, openness in terms of having conversations that are sometimes painful should be had, and just staying with the family. Taking the journey with them as they experience their child’s illness and health.” (Nurse Practitioner)
- What are some practical ways you stay connected to families during times of intensity?
“You can’t take care of patients with long-term medical conditions without trust… “
- How would you define trust in the patient/provider relationship?
- How do you build trust in your relationship with the families you care for?
Physician says he asks parents: “Do you trust what I’m saying to you?
- Have you had the experience of imagining, or being told, that the patient/family does not trust what you are saying?
- What feelings arise when you think a patient or family do not trust something you did or said? (Probe: Anger, resentment, guilt, helplessness, fear, uncertainty, etc.)
- How do these responses impact the way you feel about yourself? Your work? Your interactions with patients and families? (Probe:threatens your competence, questions your certainty, undermines trust)
“Important part of trust is… you make mistakes, you share personal thoughts, or be honest and say ‘I don’t know.’”
- Do you agree with this statement? Why or why not?
- What feelings arise when you imagine saying “I don’t know” to a patient/family? (Probe: Fear of judgment/loss of trust or esteem, Anxiety about not knowing the answer or being wrong, shame, guilt, etc. On the positive side—authentic, honest, unburdened, calm, etc.).
- How do these feelings impact the trust between you and your patients?
- To what extent does your ability to tolerate ambiguity and uncertainty impact your ability to trust yourself? Trust others?
The following section explores in greater depth common responses to suffering. Although the questions are specific to Muscular Dystrophy, they can be modified for clinicians who care for children with other types of life limiting diseases.
- Recall a time in your care of patients with Muscular Dystrophy who are experiencing a life-threatening event.
- What did notice about your own response? (Prompts: typical response might be: “I want to get away from it” (flight), “I get angry” (fight), “I feel numb and disconnected” (freeze), sadness, regret, guilt, etc.)
- What do you notice in your body? Areas of tightness, relaxation, discomfort, ease? Locate the area in the body where you notice these sensations.
- Notice the thought patterns that accompany the memory of your experience. What is the nature and tone of your thoughts? Spacious? Positive, Negative, Painful, etc.
- What are some ways that you have found to remain connected to yourself and your patient/family during times of intense suffering? Prompts: What do you rely on for support during these times?
- What are some of the challenges to remain connected within yourself, your team and your institution? (Prompts: time, cumulative stress, moral distress, burnout, grief, etc.)
The Nurse practitioner says, “Working with families who have a child with a life limiting/life threatening conditions takes staff to an emotional place they’re not comfortable with… they feel helpless regarding how to develop meaningful relationship… which are important so we can make difficult decisions.”
- What does helplessness mean to you?
- Think of a time when you experienced helplessness in the care of patients with Muscular Dystrophy. 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, etc).
- How do these feelings impact your relationship with patients/families and colleagues?
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?
The ICU nurse practitioner suggests that one way to overcome the feeling of helplessness is to better understand a family as they are outside the hospital.
“We only see child in the hospital, we don’t see them outside the ICU. That onus is on the staff to get to know that family… to talk to the family… when he feels well, what does he do? So you know that what you’re doing has a purpose. It’s not hopeless, it’s not just doing painful things, making the child suffer… It is sometimes doing painful things, but for an end goal, that the child is going to go back to school and have a happy life. It’s difficult that we don’t get to see that.”
“You’re supposed to stay hopeful, but the disease makes you feel powerless. Watching someone lose their abilities makes you feel powerless.”
- In what ways do you feel powerless when it comes to treating children with DMD?
- What do you do with feelings of powerlessness? How do you cope with those feelings?
- How does your sense of powerlessness change over time?
- How does that changing powerlessness affect your relationship with patients/families?
- In what ways are hope and powerlessness connected?
One answer to overcoming powerlessness is given in the film:
“In order to overcome powerlessness, you derive energy and get satisfaction out of being there for kids and families if there really is no hope… The more you can get involved in this, the more it helps you to, at least, put the powerlessness to a degree that it doesn’t interfere and bother you so much anymore.”
- Do you agree with this statement?
- What makes it difficult for members of the healthcare team to acknowledge feelings of powerlessness?
- What changes could be made to the medical culture to allow the acknowledgment of powerlessness in medical care?
The pediatric resident says, “Different levels of being powerless… I am powerless to cure them which is difficult…”
- What is the impact of level of training or position in the hierarchy on feelings of powerlessness?
- Reflect on a time when you felt powerless (because of your role) to address a situation that you were involved in. What actions did you take or wished you had taken. What is the residual from this experience on your current practice?
- How do the feelings of powerlessness impact our willingness and ability to speak up when we identify situations that are questionable or harmful?
Being in Control/Fear of Losing Control
- As a clinician, what does being in “control” mean to you?
- When does being in control serve you or your patients? When does it not serve?
A pediatric neurologist says: “I like being in control and trying to make things go as well as possible… kids have complications I didn’t expect, disasters I feel responsible for. Those hurt, I feel like I’ve done something wrong. I messed up. The most disquieting sensation I have is that I have somehow screwed up… That is with me a lot of the time… I don’t usually talk about that too much.”
- Reflect on a time when you thought you made a mistake, “screwed up” or missed something that was clinically important.
- What feelings, thoughts, or body sensations arise in response to Dr. Crawford’s quote? Jot down your responses.
- Where do you notice this memory in your body? (Prompt: Dr. Crawford talks about the tightness in his chest.)
- What feelings do you associate with this memory?
- What is the thought pattern that you associate with this situation? (Prompt: Dr. Crawford talks about “feeling like I did something wrong—like I messed up”.)
- How do you respond to these feelings and thoughts?
- Have ever talked about mistakes you have made with your colleagues? If yes, what was that like? Was it helpful? In what ways? If not, why not? (Prompts: Never had the opportunity (scheduling issues, cultural sanctions, etc.), had the opportunity but was afraid, too embarrassed to discuss, fear of losing control etc.)
- What would it take for clinicians to be able to speak about their mistakes and fears about “screwing up” and/or loss of control?
Betrayal/Anger Among Professionals
In the following quote, one of the pediatric neurologists suggests that he and another clinician had very different approaches and goals for a child’s treatment.
“Working toward a goal with a family, what are the next steps, and then someone else comes in and it happens often in ICU, you are the primary physician, there are other people who take responsibility for the day-to-day care things, I have worked with a family to get to a point and then someone else gets it off track… I’ve felt really angry…”
- Reflect on any experiences of conflict you have had with other clinicians regarding differences of opinion or approaches to a child’s treatment?
- What feelings or thoughts arise in response to this situation? (Prompts: Anger, frustration, betrayal, disrespect, helplessness, challenge to my competence (“they don’t think I know what I’m doing”), undermining my relationship with the family, greater understanding, grateful for new insight, etc.)
- How do these feelings impact your relationship with yourself, patients/families, and colleagues?
- When clinicians have different role responsibilities (such as a long term relationship with a specialist or an ICU clinician) what steps can be taken to recognize and address sources of conflict and potential feelings of anger and betrayal? (Prompts: Acknowledge everyone’s expertise and role in the patient’s care; create systems to formally engage all stakeholders in developing the patient’s plan of care; create forums to discuss areas of conflict, etc.).
- Reflect on other experiences involving your colleagues that have generated strong emotional responses. Describe these situations, the feelings they generated and how you addressed them.
- What seemed to help and what did not?
- What could you do differently within yourself and within your team when you feel angry, betrayed, disrespected etc.? (Prompts: Develop self-awareness, develop strategies to promote resilience, develop forums to discuss challenging cases, use ethics and mental health consultants, etc.)
- 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 DMD 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?