Why me? Kübler-Ross Stages of Grief
World turned upside down. Inverted trees in snow field, Cabinet Mountains, Montana. Receiving a terminal diagnosis flips perspectives - not only for the patient and their immediate family, but for an extended collective of others. Each person intertwined in the relationship with the terminally ill will need to navigate the stages of grief at their own pace. This can paradoxically create some challenging situations in which the ill patient must assist others in their navigation of the process.
Carey -
I suspect that almost every person, receiving unexpected news of a terminal illness, begins a journey that often includes stages of grief.
The Kübler-Ross stages of grief: (Expanded to 7 stages)
· Shock/Disbelief, aka the psychic pain spike
· Denial
· Anger
· Bargaining
· Guilt
· Depression
· Acceptance
As an emergency medicine physician delivering unexpected bad news to so many families, I witnessed the first three stages repeatedly. It’s a powerless situation for a care provider because you can offer so little other than simply being there. I’ve seen holes punched into walls, decorations thrown across the room, family members “fall out” and sometimes I’ve been verbally and physically threatened. Perhaps due to my experience with the 2013 misdiagnosis (see below), these three stages seemingly flew by in a minute or two. Yes, unfair. The “wrong type of terminal cancer” (lung??? No way!!). There was nothing I could do at this point to change the diagnosis or prognosis. So I hustled right into the Guilt stage. More about this in a later section. So far, I’ve avoided the depression stage, instead having episodic irritation or frustration created by the constraints of the progressive disease. I’ve comfortably lived in the Acceptance stage most of the time since then, with revisits to Guilt periodically.
Just as everyone’s death is an individual journey, the way that one reacts when faced with news of an earlier impending date with death will be an individual process. Everyone is aware that there are no guarantees in life, and that death may arrive suddenly and unexpectedly from undiagnosed disease or trauma. Yet those are abstract concepts and easily shuffled into the subconscious. My first reaction was not about the terminal illness. It was “Lung cancer? Seriously? You’ve got to be joking.” Given my family history and focus on strenuous aerobic exercise, I had anticipated death due to cancer – pancreatic, colon or brain. But lung? Geez. Life – and death – truly are not fair.
I did not waste energy trying to identify the “cause” of my lung cancer. This would be an exercise in futility, coupled with recall bias that would make the “results” inaccurate. Second hand smoke in the households of the 1950s? Radon from my childhood house basement? Running track and cross country, and later just running in cities with significant air pollution including Alexandria, Virginia in the late 60s-early 70s, Richmond, Virginia and Indianapolis? Viral infection (had plenty of those)? Working in very old buildings such as BAMC (4 colleagues there with cancer, 3 of them lung) and the “B Building” at Methodist Hospital?
Our journey through this phase was remarkably smooth (but harder for Robin) since we had the opportunity to do a “dry run” 5 years earlier. In 2013 I was (erroneously) diagnosed with a relatively rare T cell lymphoma with the ugly name of mycosis fungoides. With the exception of a few very close friends and immediate family members, we never disclosed this until the diagnostic series was completed – and some three months later I received a clean bill of health. Even during the initial weeks, my focus was more on how others would be affected, and there was a quick transition to the “acceptance” stage. But this misdiagnosis forced me to think deeply about life and death and existing with an incurable disease. And once you’ve had that opportunity, those thoughts are not lightly discarded.
Moonrise.
When receiving a terminal diagnoses, the world can turn on its axis for the patient and their family and friends. Day seems to become night and night becomes day.
Nicole -
Life is a series of constant transitions. Always leaving one stage but not knowing we are at the next stage because life doesn’t have clear boundaries. Having a child or receiving a terminal diagnosis causes us to change stages in an instant and nothing is ever the same again. While we are always aware of death in the distance, nobody really thinks we are going to die. Perhaps this isn’t bad, it allows us to live our lives mostly with hope and resiliency, always working and dreaming our way onto the next stage of our journey. A terminal diagnosis changes this instantly, replacing the distant knowledge of dying with the emotional soup of shock, denial, anger and guilt mixed together. Not knowing exactly when we will die or how much suffering will be felt in the process adds anxiety to the mix.
Fast tracking to acceptance is hard, unless you have had a trial run like a misdiagnosis. Acceptance is the basis for transformation because it allows you to stop living life in the future and allows you to be present in the moment. When moments are limited, each one becomes bigger and more important. The mundane becomes large. Sunbeams through the trees become miraculous, a cup of steaming coffee inspires peace and the hug of a child becomes infinity. The ordinary becomes extraordinary and we begin to feel the connection to all things in the universe. While procrastination never goes totally away, we become inspired to walk forward with a new sense of purpose. We are conscious of time being limited and so we speed to get things done which we have left undone. Simultaneously we slow down time. The value we ascribe to things becomes directly related to our awareness of a limited nature. Acceptance that we or someone we love is dying happens when we are able to be fully present in moments of time while embracing the uncertainty of the end of our life, too.
Seeing Carey become my patient caused me to be in denial. How could someone so healthy, living his reward of retirement after a lifetime of hard work suddenly be a patient with a terminal illness? It felt tragic. And suddenly, I could be him and this could happen to me. Boundaries blurred and relationships changed. The world turned upside down like the picture above. The strong teacher I remembered at the helm of the ship remained present but the weather was growing stormy. And he had invited me into the boat as co-navigator for the journey. I remember being nervous when we met at that first appointment. I felt like I was an intern all over, staffing a patient with the tough teacher. Except now I had expertise and the other expert was looking to me for advice. My thoughts felt scattered as I asked him questions about his goals and what quality of life meant to him. I focused on him as a person and the story of the life he wanted to continue creating with Robin and his daughters. Of being teacher, continued mentor and friend to many others. Having witnessed so much tragic death and prolonged futile medical care in the emergency department, he was clear on what he didn’t want. No neurologic decline, no dependence on others. Live fully and die quickly. Just as I and many other physicians would want. I sensed the compartmentalization of his life and stepped back from asking too many hard questions. We would have time to find our way together through the storm. I felt sad inside, knowing that finding him again would be for only a little while.
Robin -
It can’t be… there is no way… he doesn’t look sick…now what?
I first went down the worst-case scenario pathway of 4-6 months. I needed to work through the logistical issues first. How do we navigate this? How are we going to tell the kids? When and how should we tell people? What are the treatment options? What are the side effects of the treatments? What is the timeline? What can we expect? How are the kids going to cope? What are we going to do with the time we have left? What will I do after? Working through the immediate questions helped move me through the stages of grief from shock to acceptance with a little depression (hopefully hidden well) rather quickly. I think Carey’s quick transition to acceptance helped me avoid the denial, anger and bargaining stages for the most part. We (the girls and I) may have reverted to denial when treatments were going well and there was little evidence of his illness on a day to day or month to month basis only to have the shock again when treatments failed.
There were immediate things like diagnostic testing (biopsy, genetic markers, and imaging studies) that needed to be completed before many of the planning questions could be addressed. Research into treatment options for stage 4 lung cancer were depressing at best and survival timelines were much worse.