“Even though things inside you might be ripping you up…” Steve Williams, a patient featured in our Difficult Conversations video, tells us “…you put on a good face. For many people it’s hard to ask for help…
Has it become so deeply ingrained in us that the inclination to “go it alone” endures even when we’ve been diagnosed with a serious illness? Or, as I suspect, it’s more complicated.
Perhaps, patients keep bad news to themselves because they don’t want family and friends worrying about them or fear that their illness will cast a pall over everyone’s “normal” daily lives. In the video Cathy Ferree tells us she’s avoiding any difficult conversations with her friends and family and explains, “I feel like I have to comfort and protect my family and friends and I resent that—I wish they would comfort and protect me.” Laura Byrne, also featured in the video, wonders if she’s denying herself help from family. “Maybe they want to help, they don’t want to be protected.” The issue of protection and not wanting to burden loved ones appears to be an underlying theme in “going it alone.”
I imagine you may be asking yourselves what people ask me: “How can you expect patients, family caregivers and doctors to talk openly about treatments options and quality of life considerations within the time pressures of real time practice?” I’d like to share an email sent to me by a social worker at Rutland Regional Medical Center (VT). Over the past 18 months we’ve been collaborating with that institution on a pilot project to introduce the Difficult Conversations Toolkit (video & workbook) to patients at their cancer center and palliative care service. The aim of the project has been to demonstrate whether the Toolkit can help prepare patients to communicate questions and concerns to the healthcare team and their family caregivers.
The subject of the social worker’s email read: “Toolkit gives patient the courage to address difficult matters” The content detailed a conversation with one of the patients that received the Toolkit who only read the table of contents and first chapter in the workbook on Understanding Your Prognosis. The social worker reported, “But that alone challenged her in a good way. It forced her to think about why she had been putting off telling her family that she’d been diagnosed with stage four cancer. In part, she didn’t know how to-or or what to tell them. Not fully understanding her prognosis and treatment options is what concerned her most. I was able to assist her in identifying these concerns and how to address them with her physician and family. Your toolkit helped prepare this patient and gave her the courage to address difficult matters.”
But these conversations don’t often happen by themselves. And, sharing what one feels while being influenced by a natural desire to protect is not always easy. I think about the distinction between a wish for something and a direct request. Cathy Ferree’s “wish” is to be comforted and protected by family and friends but doesn’t ask directly for what she needs from them. The Toolkit was created to help patients and families to think through and talk about what matters to them, which can be difficult conversations but are often the most meaningful ones Workbook Chapter 3: Speaking with Family & Friends. As a result, patients and loved ones can identify and secure the supports they need—hopefully sooner rather than later. Perhaps, these conversations may just prove to be an antidote to “going it alone.”