Guide Dogs and White Canes: Navigating Patients, Families Through Cancer at Their Pace

Case

One communication challenge many of us will encounter is how to have a conversation about unrealistic expectations. What do I say when a patient who is clearly in the final stages of their disease, tells me they think they might have another 1 to 2 years, when I know that the reality is 1 to 2 more months.

What do we do when we encounter patients who have their eyes covered and yet believe they can see, that they know what is going on but believe that by sheer will they can survive. They don’t see the two sidedness of the relationship they have been forced into with their disease. Surely someone must show them the way.

I did just that recently. I did it because I thought I needed to, and because I thought I knew better. It is hard not to transfer what I know professionally to a family situation. All eyes were on me when I went with my mother to visit her sister Cheryl whose pancreatic cancer had been diagnosed 3 months earlier. My one cousin was micro managing her mother’s diet, convinced that she could alter the course of disease by encouraging her to only eat vegan food, no sugar, no processed foods. I saw immediately that Cheryl had lost weight. She told me the diet she was following was not appealing. In my zeal to be helpful, I quickly shot down the whole diet strategy and told my cousin that losing weight was far more dangerous than the additives and processed foods she restricted her mother.

I thought I was gentle in my approach, first praising Terry for her determination to help, not dismissing it full scale but suggesting adjustments. It didn’t fit Terry’s idea though. She was trying to save her mother, and I came along and put my big fat foot right in the middle of everything. Essentially, I hit her over the head with the truth and a reality she wasn’t yet ready to accept. With the best of intentions, I wrenched her white cane away and left her without a way to navigate.

Discussion

The title of this essay is “Guide Dogs and White Canes” for a reason. Who are our guide dogs as nurses? Who are the guide dogs for patients? How do we become the guides when we meet resistance?

There is an old medical construct called tincture of time. I needed to give my cousin a tincture of time, the chance to adjust even when I knew the clock was ticking. I knew that, but she did not; and by rushing on ahead instead of encouraging a forward motion, she put on the brakes. I needed to wait for her to catch up. I couldn’t expect her to take giant steps to catch up. I needed to slow down. I knew the way, but she could not keep up and I could not hurry her along.

So, what do we do? To guide our patients and family members we have to be patient. We have to repeat ourselves. We have to ask questions. Sometimes we have to say nothing, which is the hardest of all. I heard a podcast recently that spoke of the unthought known — a phrase coined by Christopher Bollas in the 1980s — in other words, something that is known on some level but unable to be thought about. It is more nuanced than denial and less deliberate than manipulation. It has more to do with allowing time and creating an environment for that unthought known to emerge. We may, as practitioners, need to fashion a setting that is conducive to that. We may need to wait even when we feel impatient. Inadvertently, I forced the information on my cousin, and in spite of being well intentioned, it was too much too soon for her. A guide dog guides and protects, nudges and directs, slows or stops when necessary. Something we can apply in our practice.

Ann Brady is a symptom management care coordinator at a cancer center in Pasadena, California.