The fine balance between hope and cope in cancer patients

At tumor board recently, 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 Oxford English Dictionary 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 65-year old man has stage 4 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.

James C. Salwitz is an oncologist who blogs at Sunrise Rounds.

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  • Suzi Q 38

    I would hope that if I ever have cancer again the doctors are honest with me and tell me my prognosis.
    If it is really, really bad, I am going to get to a beach somewhere and “lay out” in the sun.

    • ButDoctorIHatePink

      I don’t think you know how bad it can be. Go to the beach and lie in the sun now. No way can I manage going anywhere. Good luck.

      • Suzi Q 38

        True. I am acting like a “spoiled child,” doing whatever I please within reason. My BIL died of pancreatic cancer, I had
        a borderline proliferating tumor in my left ovary which was not a bad tumor to have. It can go 50-50%, hence its name.
        My sister survived colon-rectal cancer this past year.
        Together, we may have to face each other’s cancers. Genetically, it is called “Lynch’s syndrome.
        Nothing scary has happened to me yet, except for a colonoscopy and a hysterectomy. Since my hysterectomy, I have developed partial leg paralysis and troublesome neuropathies, which may be permanent. If it isn’t mechanical, it could be MS. Not fun choices.

        We left for Europe this past August and had a great time. Forgot about all of my medical troubles. When we returned, so much of me had gotten worse, neurologically. I felt just a little stupid to have gone, but since the doctors had little advice and few answers, I left, and tossed caution “to the wind.”
        My godson Bradley said:” Suzi, when the doctors didn’t know what they were doing, you gave them all the “finger” and left. You are a little nuts, but I understand what you did.”
        Yes, I had to “steal it (time)” before it took charge of my body, whatever “it” is. I told them that they had treated me for a year and a half, and couldn’t give me answers. I had warned them about this upcoming trip for at least the last year. I told them I was declining….please figure out what is wrong! They finally got a “clue” a week before my vacation. What timing.
        You are right, I don’t know how bad it can be, as I haven’t had to face what you have faced.

        All of us are different. I still want my doctors to be brutally honest. That is just me.

        I am sorry that you have breast cancer and are too ill to go anywhere.

        I hope that you will feel better soon so that you can go wherever you want to go.
        I hope for more time for you, to do all the things you want to do.
        Good Luck, and thank you for sharing your thoughts.

        • http://www.facebook.com/profile.php?id=1215914082 Wendy Felsenthal

          Thank you for your well-said response:)

          • Suzi Q 38

            You’re welcome.

  • http://www.facebook.com/andrew.griffith.547 Andrew Griffith

    I value honesty and directness, to allow me to make a more informed choice, one that reflects those things most important to me. False hope doesn’t help.

  • ButDoctorIHatePink

    We don’t live in a vacuum. I imagine that most patients understand their prognosis without a physician telling them. I have Stage IV breast cancer with mets to the liver. My oncologist has never once told me I’m going to die and I have never once thought I would live through this.

    I don’t ask him for time estimates because I don’t believe anybody can know that for sure, at least until it’s close to the end. I know what the median survival rates are. I have told him that my goal is to live to see my son graduate from high school, and he has assured me that there are still more things we can try, but has not promised me I can make that goal. Maybe that man with pancreatic cancer shared a goal too, which is why the oncologist continued to offer chemo.

    There are very few people who don’t look up their illness these days, but I suspect those who don’t are the kind who want to continue treatment and are not ready to hear the truth. That is different than hope, it is denial. And, hopefully, denial is a temporary condition and when the person is ready to face it, the doctor will be there to answer questions and help him through.

    Hope has a different meaning when you have a terminal illness. We don’t hope we’ll live. I don’t hope I’ll see a grandchild, or take my dream trip to Australia. I do have hope that I can accomplish a few things before I die – finish some scrapbooks, write out some things for my children. I hope I see my son graduate in a year. I don’t want my doctor to take that hope away, because even if 80% of his patients don’t make it a year where I am – 20% do, and I would like to think I can be in that percentile. Physically, I’ll know when it’s impossible.

    Hope: I hope I can die with grace, without too much pain, with dignity, peacefully, without scaring my family. Hope means different things to terminal people than it does to well people.

    As a patient, we know the doctor is always there to tell us when we are ready. We also know our bodies. I’m beginning to think my dream of making it to graduation may not happen, but there is nothing wrong with hoping for it, and I don’t need a doctor to tell me not to.

    I think an open, honest doctor, the kind one can come to talk to, is most important. Perhaps this doctor understood his patients needs a bit better than you think.

  • meyati

    I fired one oncologist-he was a jerk. I’m 71, everybody gets something. I got cancer- had to stage myself-and they want me to think they are competent, knowledgeable etc. They should either be able to answer a question or say they’ll get the answer-and I’m not asking how long I have-it’s a rare cancer-really rare-so I don’t ask how long I have. It just seems that they could answer basic questions. What I hate the most is how the clinic treated me like a 4 year old, when I demanded a new team leader. I finally had to say lawyer and state board of health. I was finishing radiation and didn’t have a doctor-How’s that? I don’t have hope, but I want to have quality of life for as long as possible. Right now I can laugh with my family, smile and talk to people, walk my coonhounds a little, go to the state gun range, drive safely. I just don’t see any of that if I had allowed them to cut out the bone, eye, nose on the right side of my face-Do you? Now to go out and brush my coonhounds’ teeth.