Hope versus Cope

At tumor board this week, we discussed what we tell our patients about prognosis.  Some oncologists give detailed information, including specific survival times.  Others never discuss the future, and let the events of the illness teach patient and family.  All try to adjust what they say by what the patient needs, because each physician expressed one core goal; “Whatever I say I don’t want the patient to lose hope.”  I thought about that message for a while and decided they are wrong.

The OED defines “hope as to entertain the expectation of something desired. Synonyms, according to Roget, include faith, possibility, silver lining and no cause for despair.  These are wonderful and powerful feelings.  My concern is that they are feelings which have at their core a tendency to look away from hard truth.  If our primary goal is to “hope” that things will go well, it may mean that we deny the reality that they are likely to go badly.  I worry that when we deny reality we deny ourselves the chance to cope, instead of hope.

A 65yo man has Stage IV pancreatic cancer.  His oncologist does not want to take away the man’s hope, so he immediately offers chemotherapy.  The doctor does not say that this is a 100% fatal condition, but instead spends their visits talking about treatment and side effects. The man spends the next four months getting chemo, which has a minimal benefit.  Then, instead of talking about prognosis, another chemo is offered.  Never does the man hear the message, “you have a fatal disease, there is no absolute rule you must take chemo, you may want to spend the time you have doing something other than visiting the cancer clinic.”  Hope of a chemotherapy induced blue-sky substitutes for complete information.

We all balance, hope and cope.  We must use denial of the bad things that can happen, just to get through our normal daily lives, let alone deal with disease.  Hopes and dreams are important to our emotional health and each of us has different needs.  On the other hand, in my experience, the vast majority of people are emotionally strong and, with patience, teaching, support and love, can learn to cope with even terrible news.

A colleague of mine told me the story of a young neighbor, with school age children, who died of lung cancer.  While she underwent aggressive medical care, she also received honest information regarding the fatal nature of her disease.  She used the time at the end of her life to design, write and even film what she wanted for the future of her children, so that she would always be part of their lives.  If she had been given only hope, and never the opportunity to cope, she might have might have gone blindly forward with treatment and been astonished when suddenly the end arrived.

I have deep respect for the compassion of physicians who commit their careers to sitting at cancer’s bedside. Their sensitivity to the emotional needs of their patients is in the finest tradition of their profession.  However, I wonder whether there is a tendency in modern medicine to say little, offer too much and perhaps deny, in the service of hope.  It seems to me that while we should never forget the possibility of the miraculous, and try always to avoid despair, that our patients are powerful beings and perhaps our true goal should be to move from the limits of hope, to the freedom and possibility of cope.

7 Comments

  • Liz
    Very well said. I just lost my sister-in-law, she fought but lost the battle. She was not in denial, like everyone around her. Thanks for the wise words.
    • James Salwitz, MD
      Thanks for the comment. I am sorry to hear of her death, but encouraged that she was able to find some dignity beyond denial. jcs
  • Jill Tegyi-Aravena
    This is one of my favorites. Reading this during such a difficult time makes things a little easier. Even if its just for a moment.
    • James Salwitz, MD
      I am glad to help, if only for a moment. I hope things get easier. jcs
  • JoAnne
    I have always appreciated the honesty that came from you and from my surgeon! It allowed me to be a true partner in my care!! : ) Too often, I see healthcare professionals not always offering ways to cope but instead avoiding families when there is no hope. It is not fair to the parents or their children. Only by knowing the truth,can we understand our path! No one deserves less than this! : ) And unfortunately, not everything in medicine is curable - when healthcare proviiders learn to understand that, then their patients and their patient's families can truly be involved and be part of the team! And yes, no one ever wants to hear the "bad" news, but isn't dying a part of life? How much better would it be to help someone accept their fate with peace and preparedness than to "sugar coat" the way things are and leave them unprepared ?
  • Atal E. Eralp
    I enjoy your articles/notes. I agree with the points you make in this note. I just thought that you would find the attachment i am enclosing somewhat supporting the concepts you presented here. I am a 14 year kidney cancer survivor. I shared the following thoughts 11 years ago with other cancer patiants in a kidney cancer website. Here it is: Today is my birthday. I am 65 now. And I have kidney cancer. My doctors tell me I have 50-50 chance that I may not see my 70th birthday. I am currently NED, but I go along with my life as usual. You see I have experience with another deadly disease: human frailty. When I was born the doctor told my parents that I have a 50-50 chance that I would not see my 73rd birthday. I knew that when I was 18, I knew that when I was 35 and I new that when I was 55. But somehow knowing these odds did not dictate my life very much. Every year I continued to lead my life as best as I could. I enjoyed my life as much as my circumstances allowed. I served in the Army, I graduated from college, I enjoyed a respected work environment, I married to a wonderful wife, I am proud father of two sons, I lived in a decent house, I enjoyed my food at home, occasionally enjoyed a meal in a restaurant, I took a vacation nearly every year, I played bridge. At the same time I worked hard to provide for me and my family so that we could enjoy ourselves to our best ability and circumstances. My life did not always proceed smoothly. There were ups and there were downs. But when life gets tough one has to deal with it. Did I always know how to proceed. Of course not. But I tried to do my best. I applied myself. Sometime it did not matter what I did. Things took their course. Sometime for better, sometime for worse. Sometime I felt that my efforts were rewarded, sometime not. But all in all I am happy about the way the things turned out. For this, I give a big credit to my optimism and my diligence for tackling the problems. When I look back my life did not basically change throughout the years even though I knew that there was a 50-50 chance that I may not make my 73rd birthday. If I were born 50 years earlier I would have been leading my life the same way even though my chance of making 50th birthday would have been less than 50-50, as life expectancy in those days was less than 50. So now I have kidney cancer and I have some odds, why should I change the way I live. I am dealing with this problem similar to all the other problems I dealt with. I improve my skills to deal with this disease. I am vigilant over how it is taking its course. I am working very hard to control it so that I continue to enjoy my life to the fullest extend possible. In a sense not much has changed. I have been dealing with various problems and odds all the time. I lived my life in full and I intend to live it in full in all the years available to me. Today is my birthday. I am 65 now. And I have kidney cancer. My odds are... Oh well, to hell with it!
    • James Salwitz, MD
      Happy Birthday (and MANY more). Your's is a remarkable story and an inspiring lesson to anyone who is dealing with challange and uncertainty. Your ability to seize the highroad and build a life, despite the threat which was given, almost as a curse, from the start, shows what can be done when one has the courage to really try. Thank you for sharing. May the next 10-15-20... years be as fruitful as last 65, jcs

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