Tough talks demand special skills
“Mommy, why don’t my legs work?”
“It’s not fair, Harrison gets all the attention. What about us? Don’t we matter?”
“You’re my husband. Why can’t we talk any more?”
“What exactly do you mean, there’s no cure?”
These are important, tough questions. As a parent and caregiver, how can you respond to your child’s questions about his or her disease — and the concerns of your other children? How can you and your significant other communicate effectively about your fear and grief? How can you get answers from health care professionals that address your real questions?
If only we knew how to have these “crucial conversations” with the professionals, our loved ones, and, most importantly, ourselves.
Learning to talk
Even though we all learned how to speak at a young age, at times we simply cannot get across the message we so desperately want to share. Pitfalls in delivery and emotional bombshells can cause fear and anxiety that block the pathway of a message.
Thankfully, there’s a solution to the problem of poor communication. When the stakes are high, as they are when a child has a serious illness, communication can be enhanced by using tried-andtrue techniques that improve speaking, listening and problem-solving skills. There are many programs for improving these skills; I have benefited tremendously from the strategies outlined in the best-selling series of books Crucial Conversations: Tools for Talking When the Stakes are High (Patterson, Grenny, McMillan and Switzler, McGraw-Hill, 2002). It is with the publisher’s permission that I share those concepts here.
A crucial conversation, say the authors of this award-winning program, is a discussion between two or more people where the stakes are high, opinions vary and emotions run strong.
Often, we use all kinds of tactics to dodge such touchy conversations. When the talking turns tough, we may shut down and avoid the situation, or respond by yelling and saying things we later regret.
However, families coping with muscle diseases must be resilient. If not, they will be beaten down by the prognosis, overwhelmed at the rigors of care that lie before them, and frazzled by the insecurity of what the future holds for them.
Good communication skills help families stay strong in the face of the challenges of neuromuscular disease, equipping them to face complicated, sometimes painful questions and find effective answers that work for everybody.
Start where you are
First, we must recognize how we feel about the diagnosis of neuromuscular disease and grieve for the normalcy that never will be. In order to cope, we must allow ourselves to experience the five stages of grief identified by Elisabeth Kübler-Ross: denial, anger, bargaining, depression and acceptance.
One of the first introductions we had to a crucial conversation was in May 2003, when the physician told us our son Harrison, age 5, had Duchenne muscular dystrophy (DMD). Our dreams for our son were shattered. It was hard to believe or accept the diagnosis.
I went through a two-year period when, even though I’m a nurse, I just couldn’t cope with what was going to happen to my son. I didn’t want to join a support group. I didn’t want to read about research. I just wanted to hold and play with my son. If I didn’t think about it, it wasn’t real. Cognitively, I understood, but emotionally I was in denial.
Following the initial blow of the diagnosis, family members may resort to various forms of coping — or not coping. That’s what happened in my case. After learning their brother’s diagnosis, one of my children began a tunnel-vision quest to succeed in the military via the Naval Academy. The other turned to drugs to ease the pain of our changed family dynamics. Dialogue stopped. We were all so wrapped up in our own pain that we couldn’t reach out to each other.
Coping with neuromuscular disease isn’t like coping with a sudden illness. It’s slow, progressive and stressful. At one point, I thought I would scream if just one more person asked me, “How’s Harrison?” His condition wasn’t going to magically change overnight. It was going to be a long journey of adaptation to each loss. The day he began falling. The day his legs could no longer hold him. The night his breathing woke me up. The day BiPAP was initiated.
A child with any disabling disease places unimaginable stress on a marriage. My husband and I no longer could communicate effectively with each other, much less help one another to cope with what was to come. Before I knew it, there was a divorce. If only we had learned better communication skills, maybe some of the emotional fallout and bad decision making within our family could have been avoided.
Honor the child
While we as caregivers struggle, our children also are trying to cope. They’re probably at different stages of grief and understanding about their disease and outcome. Our stage may not be congruent with theirs, and we must be ready for that.
Little statements Harrison made revealed his thoughts and fear. He asked me why other children always stared at him. He cried because he couldn’t play sports like his brother and sister. He asked why the president wouldn’t approve stem cell research. He asked why there wasn’t a cure. Sometimes I was ready for the questions, sometimes not. Was I brave enough to tell him the truth?
I know now not to be so hard on myself if I don’t know what to say or how to say it. I try to listen more, interject less. I strive to understand the message. Is he venting? Is he asking for information? Maybe he just wants me to listen.
As hard as it is, I try to be honest in my explanation of what is happening to him. As his mother, I want him to know that when things worsen, he can trust me to be there and to give honest answers to his tough questions.
Some of the most difficult crucial conversations come near the end of life, and most of us aren’t prepared to handle them. Perhaps we fear that in acknowledging death, we’re giving up, throwing in the towel and abandoning hope. But this approach shuts down meaningful conversation with the dying person. How tragic that in the last months and days, meaningful conversation is blocked. We must be courageous in opening the door for these difficult conversations. If it’s OK to talk about not being able to walk and not being able to bathe, we must make it OK to talk about the end of life. We must reassure our loved ones that they will not be alone. We will be there.
Crucial conversations reflect insight and understanding. Don’t shy away from unsettling topics or issues. With practice, you can learn to handle these moments with kindness and confidence, making a positive difference. Learning the skills of crucial conversation opens up important lines of communication and helps ensure that all family members get their needs met, especially the child with muscle disease.
Learning to communicate better with our disabled child not only will enable them to better take on the world, but will add immeasurably to the quality of life we all can enjoy together.
Jeanette Vaughan Duric, R.N., M.S.N., C.C.R.N., lives with her family on a sheep farm in Blue Ridge, Texas. A clinical education specialist at Presbyterian Hospital of Dallas, she has had 25 years of critical conversations with ICU and emergency patients, and now is applying those skills to being the mother of a son with DMD. She is married and has two other sons and a daughter.
The strategies below are an introduction to the concepts outlined in more detail in Crucial Conversations trainings. These training sessions are offered by many hospitals and organizations and the book and workbooks are available in bookstores and online.
Start with yourself. First, we must be able to tell our story. Caregivers must be aware of and able to express two important things: how we feel and what we want or need. Many people never make it past this point.
Make it safe. Dialogue, the free flow of relevant information, forms the core of every successful conversation. In a dialogue, people feel comfortable sharing their opinions, even if they know their views differ. People often feel safe and “buy in” to a conversation when they find common ground in facts or feelings. Lack of buy-in causes conversations to deteriorate into arguing, debating or plain running away.
One way to promote safe dialogue and common ground is to approach the other person with a blend of confidence and humility. Express confidence by sharing your story clearly. Then demonstrate humility by asking others to share their views. Use phrases like, “I was wondering why ...” or “perhaps you were unaware ...” Use statements like “in my opinion” instead of “the fact is ...” Avoid superlatives like “everyone,” “always” or “never.”
Listening is critical. It’s said that one of the best ways to persuade others is with your ears — by listening to them. Good listening skills include respectful body language and tone of voice, asking questions, mirroring, paraphrasing and priming. Invite someone to talk by saying, “I really want to hear your thoughts.” Mirror feelings back: “You seem angry at me.” Paraphrase the other’s story by restating it in your own words: “Let’s see if I understand …” Encourage the other person to talk by priming the conversation, or offering your best guess as to what he or she may be thinking or feeling: “Are you thinking that maybe ...’
Deal with disagreements. When people fear being attacked or humiliated, they become defensive. If the conversation heats up, back off and work to re-establish common ground and safety. Redouble your listening efforts. It’s important that others see that you care about their goals, interests and values. If necessary, take a break — but always agree on a time to revisit the topic. Don’t just sweep it under the rug.
One strategy for working through problems is called “ABC”: Agreeing, Building and Comparing. When arguments occur, first look for areas of agreement — even if it’s only that you both are sick of arguing. Point out those agreements and build on common ground. Compare your perspective with the other person’s and, rather than suggesting they’re wrong, suggest that you differ. Work together to accommodate those differences.
Do you want to be right, or do you want to solve the problem? Move away from wanting to win and instead focus on what’s really wanted from the conversation. Maintaining this focus can help deflect defensiveness in ourselves and others. Don’t be afraid to apologize and clarify misinterpretations.
Conversations sometimes hit an impasse. Child: “I hate those splints. I’m not going to wear them.” Mom: “But the doctor said you have to wear them.” At these times, try to “CRIB”:
Make a plan. A positive end result to a crucial conversation is essentially a plan, a move to action. Plans should include what journalists call the “Four Ws”: Who will do what and when, and what follow-up actions will be taken?
Take care of yourself. When we’re under stress, we’re more likely to fall back into negative forms of communicating. Part of caring for ourselves is providing ourselves respite from caring for our child. To be effective communicators, we must give ourselves permission, or better yet, a mandate to care for ourselves.