On Denying Denial. This Article may resonate with many of us “living in between” of recurrent cance

Alexandra

On Denying Denial - by Daniel Rayson, MD, FRCPC, Division of Medical Oncology, Queen Elizabeth II Health Sciences Centre and Dalhousie University
JOURNAL OF CLINICAL ONCOLOGY
VOLUME 31 _ NUMBER 34 _ DECEMBER 1 2013

 

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. 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. 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.

forme

Thank you

Alexandra,

 

Thank you for posting this. So many just don't understand or "get it"

I've had a doctor or two ask me how I cope. Well it's not about coping, not really, but more about just doing, just living the best I can at any given time.

We all have moments of fear and "denial" helps us to move forward. I don't really really like the word, denial but as long as I can keep moving forward, I am okay.

Of course there are times when the progress of forward movement is very slow, almost stuck, but hey I am still here. Still living, still paying bills and still very happy to be able to do such mundane things.

I wish all docs would be required to take courses in real truthful patient interactions. Not just clinical, but emotional real world living and dying.

Thanks again for always finding such interesting articles to share. This one really touched something inside me today.

Hugs,

Lisha

lovesanimals

forme said:

Thank you

Alexandra,

 

Thank you for posting this. So many just don't understand or "get it"

I've had a doctor or two ask me how I cope. Well it's not about coping, not really, but more about just doing, just living the best I can at any given time.

We all have moments of fear and "denial" helps us to move forward. I don't really really like the word, denial but as long as I can keep moving forward, I am okay.

Of course there are times when the progress of forward movement is very slow, almost stuck, but hey I am still here. Still living, still paying bills and still very happy to be able to do such mundane things.

I wish all docs would be required to take courses in real truthful patient interactions. Not just clinical, but emotional real world living and dying.

Thanks again for always finding such interesting articles to share. This one really touched something inside me today.

Hugs,

Lisha

Excellent Article, Alexandra

Each of us has a right to feel the way we feel as we make our journey through life.  There have been many times in my life, both pre and post cancer, when denial and hope have kept me sane.

Kelly

Alexandra

Dealing with mortality

Above article was introduced for discussion in the Canadian online chatroom for ovca patients I attend on Fridays.

I copy and paste my response I posted there:

I met my share of medical professionals giving terminally ill patients and their families excessive and graphic information they are not ready for, resulting in complaints of "negative, mean, cold, crushing-my-last-hope doctors". Or "brilliant, honest, no-nonsense doctors", depending on who is judging.
Back in 2010 the story of a Fort Worth, TX oncologist Mary Milam was plastered all over the news. In response to her male patient's question "What would you do? (when his colon cancer spread to the liver) she said "If it were me, I would get a bottle, a gun and go into the woods". She was fined $1000, eight hours of continuing medical education "in patient-physician communication" and eight hours in "risk management." Was it brutal honesty or gross insensitivity?

I have also met doctors patronizing their patients with "cancer for dummies" version of their status and prognosis, creating paranoia that "my doctor is hiding something from me". They are also the most loved "kind and gentle doctors" on ratemds.com.

In Europe doctors are obligated to update terminal patients on their status only if they are asked a direct question. Last year my 46-years-old classmate Axel C. died in Italy of colorectal cancer. His wife knew from the doctors that his days were numbered and kept it to herself. He never asked the question and was never told that he was dying. Till the last moment he kept talking about getting better and going back to work. He died in denial. Now his widow needs a lot of therapy.

I once attended the workshop organized by Ovarian Cancer Canada and Sunnybrook Hospital in Toronto. Among other presenters there was an onco-psychologist, who referred to ovarian cancer patients demanding 3rd, 4th, and more lines of chemo as living in denial and mentally unstable, because it is a well-known fact that chemo is no longer curative and in many cases ruins their quality of life without extending overall survival. Her presentation designed for medical professionals and recycled for the workshop was a little inappropriate for the audience of ovarian cancer patients. Technically she was right but obviously she never had to make that choice for herself or for her loved ones.

In my opinion the goal relationship between the oncologist and the terminally ill patient should be based on trust and dispensing as much information as the patient is willing to process at the moment. In the ideal world doctors should be trained to take subtle cues from patients. If the patient wants to live in denial and hope for a miracle because it suppresses her fear of dying, I say let her. If the patient wants to take charge, actively participate in her treatment decisions till the end and plan her own funeral, god bless. There is no wrong way to deal with your own mortality.

 

Mwee

Alexandra said:

Dealing with mortality

Above article was introduced for discussion in the Canadian online chatroom for ovca patients I attend on Fridays.

I copy and paste my response I posted there:

I met my share of medical professionals giving terminally ill patients and their families excessive and graphic information they are not ready for, resulting in complaints of "negative, mean, cold, crushing-my-last-hope doctors". Or "brilliant, honest, no-nonsense doctors", depending on who is judging.
Back in 2010 the story of a Fort Worth, TX oncologist Mary Milam was plastered all over the news. In response to her male patient's question "What would you do? (when his colon cancer spread to the liver) she said "If it were me, I would get a bottle, a gun and go into the woods". She was fined $1000, eight hours of continuing medical education "in patient-physician communication" and eight hours in "risk management." Was it brutal honesty or gross insensitivity?

I have also met doctors patronizing their patients with "cancer for dummies" version of their status and prognosis, creating paranoia that "my doctor is hiding something from me". They are also the most loved "kind and gentle doctors" on ratemds.com.

In Europe doctors are obligated to update terminal patients on their status only if they are asked a direct question. Last year my 46-years-old classmate Axel C. died in Italy of colorectal cancer. His wife knew from the doctors that his days were numbered and kept it to herself. He never asked the question and was never told that he was dying. Till the last moment he kept talking about getting better and going back to work. He died in denial. Now his widow needs a lot of therapy.

I once attended the workshop organized by Ovarian Cancer Canada and Sunnybrook Hospital in Toronto. Among other presenters there was an onco-psychologist, who referred to ovarian cancer patients demanding 3rd, 4th, and more lines of chemo as living in denial and mentally unstable, because it is a well-known fact that chemo is no longer curative and in many cases ruins their quality of life without extending overall survival. Her presentation designed for medical professionals and recycled for the workshop was a little inappropriate for the audience of ovarian cancer patients. Technically she was right but obviously she never had to make that choice for herself or for her loved ones.

In my opinion the goal relationship between the oncologist and the terminally ill patient should be based on trust and dispensing as much information as the patient is willing to process at the moment. In the ideal world doctors should be trained to take subtle cues from patients. If the patient wants to live in denial and hope for a miracle because it suppresses her fear of dying, I say let her. If the patient wants to take charge, actively participate in her treatment decisions till the end and plan her own funeral, god bless. There is no wrong way to deal with your own mortality.

 

Great article and terrific topic... thanks

so much for posting this.    ((((HUGS))))   Maria

zenmama

Alexandra said:

Dealing with mortality

Above article was introduced for discussion in the Canadian online chatroom for ovca patients I attend on Fridays.

I copy and paste my response I posted there:

I met my share of medical professionals giving terminally ill patients and their families excessive and graphic information they are not ready for, resulting in complaints of "negative, mean, cold, crushing-my-last-hope doctors". Or "brilliant, honest, no-nonsense doctors", depending on who is judging.
Back in 2010 the story of a Fort Worth, TX oncologist Mary Milam was plastered all over the news. In response to her male patient's question "What would you do? (when his colon cancer spread to the liver) she said "If it were me, I would get a bottle, a gun and go into the woods". She was fined $1000, eight hours of continuing medical education "in patient-physician communication" and eight hours in "risk management." Was it brutal honesty or gross insensitivity?

I have also met doctors patronizing their patients with "cancer for dummies" version of their status and prognosis, creating paranoia that "my doctor is hiding something from me". They are also the most loved "kind and gentle doctors" on ratemds.com.

In Europe doctors are obligated to update terminal patients on their status only if they are asked a direct question. Last year my 46-years-old classmate Axel C. died in Italy of colorectal cancer. His wife knew from the doctors that his days were numbered and kept it to herself. He never asked the question and was never told that he was dying. Till the last moment he kept talking about getting better and going back to work. He died in denial. Now his widow needs a lot of therapy.

I once attended the workshop organized by Ovarian Cancer Canada and Sunnybrook Hospital in Toronto. Among other presenters there was an onco-psychologist, who referred to ovarian cancer patients demanding 3rd, 4th, and more lines of chemo as living in denial and mentally unstable, because it is a well-known fact that chemo is no longer curative and in many cases ruins their quality of life without extending overall survival. Her presentation designed for medical professionals and recycled for the workshop was a little inappropriate for the audience of ovarian cancer patients. Technically she was right but obviously she never had to make that choice for herself or for her loved ones.

In my opinion the goal relationship between the oncologist and the terminally ill patient should be based on trust and dispensing as much information as the patient is willing to process at the moment. In the ideal world doctors should be trained to take subtle cues from patients. If the patient wants to live in denial and hope for a miracle because it suppresses her fear of dying, I say let her. If the patient wants to take charge, actively participate in her treatment decisions till the end and plan her own funeral, god bless. There is no wrong way to deal with your own mortality.

 

Thank you - timely article

Interesting article for me to read right now as I am right in the middle of feeling terror.  And hoping that I can get my feet under me and feel some, well hope.  A little bit of denial  might be just what I need.  Was told last week that a CT scan has revealed a third recurrence.  On the liver.  And I am just TERRIFIED.  It is like being diagnosed all over again.  Right now I am in the "I really don't think I can do this" stage.  No idea why I chose zenmama as my name when I joined.  I am far from zen. 

Alexandra, I am located in Canada.  Can you tell me about the online chat group you are part of?  I have never been part of a support group.  There is one that meets once a month here, but I will have to wait until May to try.

Alexandra

zenmama said:

Thank you - timely article

Interesting article for me to read right now as I am right in the middle of feeling terror.  And hoping that I can get my feet under me and feel some, well hope.  A little bit of denial  might be just what I need.  Was told last week that a CT scan has revealed a third recurrence.  On the liver.  And I am just TERRIFIED.  It is like being diagnosed all over again.  Right now I am in the "I really don't think I can do this" stage.  No idea why I chose zenmama as my name when I joined.  I am far from zen. 

Alexandra, I am located in Canada.  Can you tell me about the online chat group you are part of?  I have never been part of a support group.  There is one that meets once a month here, but I will have to wait until May to try.

Welcome zenmama

I sent you info about chat group via PM

NoTimeForCancer

Alexandra said:

Dealing with mortality

Above article was introduced for discussion in the Canadian online chatroom for ovca patients I attend on Fridays.

I copy and paste my response I posted there:

I met my share of medical professionals giving terminally ill patients and their families excessive and graphic information they are not ready for, resulting in complaints of "negative, mean, cold, crushing-my-last-hope doctors". Or "brilliant, honest, no-nonsense doctors", depending on who is judging.
Back in 2010 the story of a Fort Worth, TX oncologist Mary Milam was plastered all over the news. In response to her male patient's question "What would you do? (when his colon cancer spread to the liver) she said "If it were me, I would get a bottle, a gun and go into the woods". She was fined $1000, eight hours of continuing medical education "in patient-physician communication" and eight hours in "risk management." Was it brutal honesty or gross insensitivity?

I have also met doctors patronizing their patients with "cancer for dummies" version of their status and prognosis, creating paranoia that "my doctor is hiding something from me". They are also the most loved "kind and gentle doctors" on ratemds.com.

In Europe doctors are obligated to update terminal patients on their status only if they are asked a direct question. Last year my 46-years-old classmate Axel C. died in Italy of colorectal cancer. His wife knew from the doctors that his days were numbered and kept it to herself. He never asked the question and was never told that he was dying. Till the last moment he kept talking about getting better and going back to work. He died in denial. Now his widow needs a lot of therapy.

I once attended the workshop organized by Ovarian Cancer Canada and Sunnybrook Hospital in Toronto. Among other presenters there was an onco-psychologist, who referred to ovarian cancer patients demanding 3rd, 4th, and more lines of chemo as living in denial and mentally unstable, because it is a well-known fact that chemo is no longer curative and in many cases ruins their quality of life without extending overall survival. Her presentation designed for medical professionals and recycled for the workshop was a little inappropriate for the audience of ovarian cancer patients. Technically she was right but obviously she never had to make that choice for herself or for her loved ones.

In my opinion the goal relationship between the oncologist and the terminally ill patient should be based on trust and dispensing as much information as the patient is willing to process at the moment. In the ideal world doctors should be trained to take subtle cues from patients. If the patient wants to live in denial and hope for a miracle because it suppresses her fear of dying, I say let her. If the patient wants to take charge, actively participate in her treatment decisions till the end and plan her own funeral, god bless. There is no wrong way to deal with your own mortality.

 

Thank you, Alexandra.  I love

Thank you, Alexandra.  I love the things you find and share. 

Too long to bother explaining, but the whole "denial" thing is interesting on so many levels for me. I will say I left a message on a voicemail at 2 o'clock in the morning telling a practitioner that none of my family was in denial of the facts and when she saw my sisters the next day and she told them everything is taken care of.    I later sent her a thank you note for all her help. 

poopergirl14052

NoTimeForCancer said:

Thank you, Alexandra.  I love

Thank you, Alexandra.  I love the things you find and share. 

Too long to bother explaining, but the whole "denial" thing is interesting on so many levels for me. I will say I left a message on a voicemail at 2 o'clock in the morning telling a practitioner that none of my family was in denial of the facts and when she saw my sisters the next day and she told them everything is taken care of.    I later sent her a thank you note for all her help. 

Great read

thank you

scatsm

great article and thoughtful response, Alexandra

I really resonated with the notion of 'terror management'. It might be a bit of hyperbole but not for me tonight. Starting chemo tomorrow certainly does nothing to get me back into a state of 'normal' denial....I long to be there soon. I wish it for all of us.

 

Alexandra, what do you hear about your situation and the parp trial?

zenmama

scatsm said:

great article and thoughtful response, Alexandra

I really resonated with the notion of 'terror management'. It might be a bit of hyperbole but not for me tonight. Starting chemo tomorrow certainly does nothing to get me back into a state of 'normal' denial....I long to be there soon. I wish it for all of us.

 

Alexandra, what do you hear about your situation and the parp trial?

Sending good wishes

Susan,

I am just reading your comment and sending you good wishes for your chemo today.  I hope it goes well and you get home and nurture yourself.

 

 

zenmama

scatsm said:

great article and thoughtful response, Alexandra

I really resonated with the notion of 'terror management'. It might be a bit of hyperbole but not for me tonight. Starting chemo tomorrow certainly does nothing to get me back into a state of 'normal' denial....I long to be there soon. I wish it for all of us.

 

Alexandra, what do you hear about your situation and the parp trial?

Sending good wishes

Susan,

I am just reading your comment and sending you good wishes for your chemo today.  I hope it goes well and you get home and nurture yourself.

 

 

Hearty Pioneer

Thanks

What a wonderful thought provoking article. What is denial for one is reality for another. I am thankful for my surgeries and my chemo treatments. Along with the homeopathy, exercise and nutrition options I use.  

kikz

Great article

I have had this discussion before, maybe with my shrink.  I feel we live in denial everyday.  If we didn't, we would be afraid to get out of bed in the morning and we certainly would never let our children out the door.  I'm not talking about avoiding reality but if we focused on all the what-ifs in life, we'd go nuts.  There are times on this journey when it all does seem like too much.  We deal with those moments and thankfully move on.  I wish I had realized this when I used to stress and worry about everything.

Karen

Kaleena

Thanks for the Article!

Thanks for the article, Alexandra!   Great read.  

I thought it kind of funny because recently I had to see a urologist for a possible stent due to a mass which is encompassing my left ureter.   After seeing the urologist, he said he didn't need to see me again and to return to my gyne/onc.,   After I left the office I checked my records and it stated that patient was "smiling".    I thought it strange for one because the urologist didn't want me to return.  Also, I was so annoyed that they had left me in the exam room (not the waiting room) for over 45 mintues without anyone checking on me.  So I was a bit annoyed when the PA started asking me questions.  I am wondering now if I wasn't "smilling" if he would have wanted me to return as a follow up.   Interesting.

Anyway, Thanks for sharing!

Kathy