On Denying Denial
- Daniel Rayson⇑
-
From the Division of Medical Oncology, Queen Elizabeth II Health Sciences Centre and Dalhousie University, Halifax, Nova Scotia,
Canada.
- Corresponding
author: Daniel Rayson, MD, FRCPC, Division of Medical Oncology, Queen
Elizabeth II Health Sciences Centre and
Dalhousie University, Room 460 Bethune Bldg,
1276 South Park St, Halifax, Nova Scotia, Canada B3H 2Y9; e-mail: daniel.rayson@cdha.nshealth.ca.
© 2013 by American Society of Clinical Oncology
I was providing clinical coverage for a
vacationing colleague and had an internal medicine resident working with
me in clinic.
One of my colleague's patients had been slotted into
my clinic space that Tuesday morning for an assessment before her next
cycle of chemotherapy. For the patient, there was a
clear understanding that I was a stand-in for her real oncologist, with
my role being to adjust, approve, and order her next
round of chemotherapy. From my perspective, the patient was someone
whose
role was to have tolerated cycle 1 well, requiring
neither dose adjustment nor supportive care medication overhaul.
Sometimes
this is the easiest type of clinical encounter, one
without baggage or expectations.
The resident came out of the examination room
and found me in the work area. She dutifully reported all pertinent
positives
and relevant issues from both the functional inquiry
and the physical examination. The blood work was satisfactory, and
supportive
care medications were well suited to maximize her
tolerance of therapy. All was well until the resident said, “She reports
excellent energy, she is smiling all the time …
obviously in denial.”
My attention was piqued both by her comment
and the slightly pompous, opinionated way in which it was expressed. Her
report
of a patient being in denial was not an objective sign
but a judgment based on a brief clinical encounter with a stranger.
How many times have I heard that same opinion
expressed with a similarly condescending tone by students and caregivers
of
all persuasions and ages?
“What exactly do you mean by ‘she is obviously in denial?’” I asked somewhat pointedly.
“You know, not dealing with reality. I don't think she understands the situation she is in,” she replied.
This particular patient had experienced
chemotherapy before. Approximately 3 years before this clinic visit, she
had received
six cycles of intensive adjuvant chemotherapy
subsequent to a modified radical mastectomy for a high-risk breast
cancer. All
hopes were riding on her adjuvant therapy and, until
the day she presented to the emergency room with rapidly progressive
abdominal pain and fever, the torment of nearly 5
months of chemotherapy had seemed worth it. The CAT scan however
suggested
otherwise, documenting large-volume liver metastases,
biopsy-confirmed as recurrent, triple-negative disease. She was here
now for her second cycle of platinum-based
chemotherapy and was not conforming to psychodynamic expectations. She
was living
“in denial,” I was told.
That same evening after clinic, I visited one of my patients in the hospital. She had been admitted 3 days before with an
upper gastrointestinal bleed as a result of gastric varices.
I had met her roughly 6 years ago, when she
presented with metastatic breast cancer with small-volume liver
metastases. She
had been on continuous therapy over this time period
with a variety of systemic agents. Slowly, but irrevocably, the disease
increasingly took up available space within the liver
and made its way to her brain. It was now approximately 7 months after
her brain radiation when she presented with torrential
upper gastrointestinal bleeding, seemingly stabilized, but at the cost
of deepening jaundice and crushing fatigue.
She was always with her husband. At every
juncture, during times of stability or progression, they would carefully
consider
my words, weigh the pros and cons, and always agree to
proceed with more treatment. If I didn't recommend more treatment,
they would find a way to make me see that there were
no other relevant options. I never met their children. I never had a
discussion of her wishes in regard to resuscitation.
Each time I tried to broach either subject, they would join forces to
divert the focus away from issues related to death and
toward the next steps in treatment. They were both living in denial.
Until today, when he greeted me with both
hands firmly gripping my forearms. “I know she's going. She knows she's
going. Please
don't move her.” My visit with her confirmed his dire
prognostic estimate in my own mind. His concern arose from a discussion
he had with one of the nurses who suggested that his
wife might be moved to a palliative care floor.
“She only has a few days left. No one's told me that but I know, I know my wife. She knows it. Why move her for a few days? It would just take away all of her hope. Please don't let them do that.”
On the drive home that night, these two
cases preoccupied my thoughts. Both patients could easily have had their
denial challenged
from multiple perspectives. In regard to my patient,
an outside health care professional might have been shocked at the
apparent
lack of insight demonstrated by the couple. I could
easily imagine whispered discussions on the hospital floor among
uninvolved
caregivers, wondering what on earth the oncologist
talked about with them during clinical encounters.
There are a multitude of theories regarding
psychological adaptation to a life-threatening diagnosis, and I have no
doubt
that many have kernels of waxing and waning relevance
throughout a patient's illness. Stumbling through the literature, the
concept of terror management caught my interest as
being of potential relevance for the two patients I saw that day.
Terror management theory (TMT) is a social
psychological concept that attempts to explain the role of culture in
mitigating
the essential human conflict arising from the need to
live every day while understanding that death is inevitable.1
The theory argues that most human behavior, from the organization of
society to the creation of art, is motivated by an intense
need to ignore the inevitability of death. It has been
extensively examined in the shaping of individual self-esteem, lifelong
decision making in all domains, and adoption of health
behaviors aimed at prolonging high-quality survival.2 TMT attempts to explain why we continue to give meaning to our thoughts, actions, and emotions despite the fact that at some
point, mostly not of our own choosing, death will simply shut us and everything we know, down.
In a sense, TMT posits that we are all
living in a generic state of denial in regard to our own mortality. We
know it is going
to happen, we have “mortality salience,” but we
continue moving forward as a way to subsume the terror or deny the
reality
of each day bringing us closer to the end. TMT in the
context of mortality salience may be one of the key factors
distinguishing
us from other animals, along with our opposable thumbs
and the development of language. Although commonly discussed in the
context of group or societal behavior and the
development of culture, TMT also has importance at the level of the
individual
and perhaps may be of particular relevance in the face
of metastatic cancer.
Many of us often wonder how our patients do
it. In the face of metastatic cancer, to be able to continue work, raise
families,
pay bills, cook meals, drive kids around, and maintain
partnerships with the unaffected seems heroic. Many continue to perform
daily tasks and carry on with longer term duties and
responsibilities remarkably well, until such point as disease, and/or
treatment, begin to erode energy, ability, and
functionality. For those who are crushed by the existential weight of
the diagnosis,
there are avenues of support, psychologic care, and
pharmaceutical treatment that are all brought to bear to enable improved
terror management. The efforts are deemed successful
when patients are able to move toward normalization of activities and
achieve a semblance of the psychological balance that
existed before disease development or progression. In a sense, this
care may be aimed at improving terror management
skills although we use terms like “anxiety management,” “blunting of
reactive
depression,” or “coping skill strengthening” to
describe the supportive goals that we hope will improve an individual
patient's
quality of life.
Well-developed terror management skills are
likely more important for our patients with metastatic cancer than for
most of
us. Mortality denial on a daily basis is highly
adaptive in helping all of us to live as well as we can for as long as
possible,
goals that we all seek in the care of those with
metastatic disease. Supporting terror management skills and blunting
mortality
salience on a daily basis do not in any way preclude
the importance of discussions around end-of-life wishes, nor do they
dictate that physicians should avoid or deflect
difficult conversations around death and dying when the opportunities
arise
or the disease dictates. Recognizing the importance of
terror management, however, should make us more sensitive to the timing
and context of these discussions. They should
especially make all those with transient patient contact, ignorant of
individual,
family, and/or disease dynamics, especially wary of
reflex psychoanalysis based on fleeting clinical contacts.
We all live with a component of denial
according to TMT. The things we do to give meaning to our lives, despite
the certainty
of death, are powerful forces driving human behavior.
The next time I hear that one of my patients is in denial or find myself
thinking this same thought, I'll take a minute to
imagine how their life would be if they were not using some sort of
denial
to make it through the day. Imagine yourself in their
position, with terror management skills beaten down by well-meaning
people trying to convince you to disregard a highly
adaptive coping mechanism that we all seem to use on a daily basis,
consciously
or not.
My own patient died peacefully, without
relocation, within 36 hours of my visit. The other patient described
continues to
smile through her chemotherapy. If a little denial
helps along the way, irrespective of outcome, so be it. Who am I to
disrupt
this potentially fragile cognitive strategy?
Our patients know the end is coming.
We know the end is coming.
We all need to keep on keeping on.
