Upended Universe: Ambiguous Loss and Grief of a Cancer Diagnosis

Ambiguous loss is a term coined by the psychologist Pauline Boss in the 1970s. The true nature of the term refers to losses that have no clear definition to them, with no closure or clear understanding.^1,2 For example, those who lost a loved one when the Twin Towers fell on 9/11 never had a body to confirm the death. They knew their loved one had perished and were able to verbalize that their loved one was dead but at the same time, with no body and so much unknown about those last moments, they also held out the hope that somehow their loved one may have survived. Logic and emotion collided, and grief was ground into them as certainly as the dust from the towers.

Today, in the midst of the COVID pandemic and perhaps because of it, we have a small window into the unknown journey every cancer patient is forced to make. Although cancer is a different experience than COVID, there are similar components to it. Better understanding of it on the part of nurses might help us as we face communication challenges with our patients.

Ambiguous loss follows a similar pathway through COVID and cancer. It is a loss that occurs without closure or clear understanding. It is grief over a loss of what was before — life before COVID or cancer — but also grief over the loss of what was meant to be, their future now unrecognizable. It is the kind of loss that leaves people searching for answers, which complicates and delays the process of grieving, and can result in unresolved grief. It holds within it the unknown. Questions arise such as: What happened to those who perished on 9/11? When will the pandemic be over? What happens after the pandemic?

Those questions are similar to the questions and uncertainty our patients with cancer face. What is next? What if the treatment doesn’t work? And there is another aspect to it that is comparable: The person facing the new diagnosis never expected this to happen. How do they adjust to the changes? How did they end up here in this oncologist’s office, at the imaging center facing an MRI, waiting to go into surgery not knowing what the doctors will find until they get in there? What happens if the chemo/immunotherapy/surgery/radiation does not work? Vulnerability is ever present, and no one can truly answer their questions.

Discussion

None of us knows for certain how each person will respond to treatment. We provide information based on what we have seen. Statistics are numbers, albeit important numbers, but they are not the sum of a person’s life and value. No one can explain why one person got cancer and someone else did not. The inexplicable part, the uncertainty and the vulnerability are one thing, but the other part, the ambiguous part, is this: What has cancer taken away from their expectation for the future? Each of us has a picture, a photo album if you will, of what the future will look like and those imagined pages of anticipated experiences are torn away by their diagnosis. What was held as fact is gone. How does a person mourn for something they expected to have, to suffer the loss of a something that never actually existed?

I have asked many questions in this column and yet provide few answers. The context of each person’s experience will impact how we relate and communicate with them. Perhaps one reality of COVID is how it illuminates the dark corners of the unknown, the place where all of us are existing while COVID rules the world. The threat is real for all of us. With COVID none of us are onlookers, we are part of the whole, the collective. Yet with our cancer patients we are onlookers. Perhaps the uncertainty we are all feeling with COVID can help us better understand the ambiguous loss patients with cancer confront with their diagnosis and treatment.

COVID and cancer are both threats to our physical body. Our natural instinct is to protect our bodies. Over my years of caring for oncology patients there is one group in particular that I have an internal struggle to understand. They are the patients who forego traditional treatment and instead are either lost to follow up or who reject traditional therapy in favor of alternative therapies. Yet when those therapies fail, as we know they will, these patients return for conventional treatment and often with disease that has spread beyond what it would have otherwise. When I encounter them now facing advanced cancer and complex symptoms, I find my internal voice saying over and again, “Why didn’t you pursue treatment?” The answer is complicated and often does not make sense to others. Yet it does to the patient. There is no point in asking the question out loud. Done is done. But I feel inclined to draw on this COVID experience to reference in my practice with patients like this.

In an effort to protect themselves from the harsh reality of a cancer diagnosis, some will twist reality to match their internal narrative. They become convinced that their cancer is different, or that they themselves are different and so cannot tolerate the usual treatment. Yet in so doing, they set themselves up for failure. The micro focus that leads to the decision to disregard conventional treatment disregards the bigger picture. I believe it is a similar mechanism that drives some to reject the science of COVID, to ignore the warnings and to choose to battle the smallest of details — wearing a mask, for example.

Ambiguous loss is loss without resolution. Right now, COVID does not have a predictable resolution. Cancer, regardless of prognosis, has an unpredictable nature as well. Communication challenges are inherent in this ambiguity. How we approach that challenge is connected not to resolution but to understanding how complex a person’s reaction to cancer may be. There is a paradox to it. The harder we try to flash the mirror of reality, the more they may withdraw. There is little point in arguing. Rather, we can offer support without judgment. We can encourage soothing behaviors such as meditation, music, prayer. We do not have to correct misconceptions. We do need to be honest, but we can also answer the questions at hand and stop at the wall that was erected. It is not easy to be an onlooker when what we want to do is illuminate and educate. It is its own challenge. But sometimes communication requires no words.

References

1. Boss P. Ambiguous Loss: Learning to Live With Unresolved Grief. Harvard University Press; 2000.

2. Ambiguous Loss. Pioneered by Pauline Boss, Ph.D. Accessed August 26, 2020. https://www.ambiguousloss.com