Balancing Hope and Cope by Dr. James C. Salwitz

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. (Emphasis mine – KT)

These words were written by James C. Salwitz MD, a medical oncologist and clinical professor of medicine in New Jersey (USA).  He blogs at Sunrise Rounds and is a frequent guest blogger on KevinMD.com, which is where I read the following post. It is reblogged here with the kind permission of Dr. Salwitz.

Have you experienced “the limits of hope”? Do you know “the freedom and possibility of cope”? Please read the essay and let us know what you think.

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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.

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3 thoughts on “Balancing Hope and Cope by Dr. James C. Salwitz

  1. I agree whole heartedly – I would rather be given an honest assessment of my condition (Should I ever be in that situation) than live a lie – yes it may be painful to hear that one has a terminal disease, but I would rather have the opportunity to live life to the fullest and prepare for my departure from this mortal coil, than live in false hope, which I believe, helps nobody in the long run.
    Thank you for sharing this TK.
    Blessings and prayers
    Maxine

  2. Excellent post.

    I think this makes a lot of sense in the world of cancer diagnosis and treatment, but it also resonates with me in the psychiatric world as well.

    There are a few illnesses that I see almost every day, such as schizophrenia, that are lifelong maladies not to be cured, but coped with. Notwithstanding the bluster from some advocacy groups that people recover (they do, from single episodes of depression, for example) or that mental illness can be cured (it can, if it is, for instance, an episode of acute psychosis caused purely by an ingestion of a toxic substance), most lifelong psychiatric illnesses similar to schizophrenia must be dealt with head on and managed, not cured in the traditional sense of the word.

    Patients, and even more so their families, do NOT want to hear this. Even in the face of florid hallucinations, decreased ability to perform basic personal hygiene, dropping out of school, losing jobs and relationships, and suicide attempts, families of these patients are often looking for the “magic bullet” that will restore their son or daughter or husband to pre-disease normalcy.

    It doesn’t happen.

    Terminal cancer kills. It snuffs out life much too soon. It terminates living.

    Serious psychiatric disease kills too, in a physical sense, in that these patients often live 15-25 years less than their “normal” counterparts. The devastation it causes is real too, but notably it kills productivity in the prime of life, intimacy, and the ability to enjoy a fruitful existence in the world. Families desperately want to keep their loved ones “alive”, just as the families and lovers of cancer patients do, but they often think that this only means getting them back to “the way they used to be”.

    In cancer treatment and in the battle against mental illness we are all much better served, in my opinion, by being honest with ourselves and our patients and their families. We know the facts. We know the figures. We know the likely outcomes and the brutal prognosis.

    We know ho to instill hope when it is time to do that.

    We also know how to promote courage and entreat people to talk, read, learn and empower themselves to live the best lives they can in spite of their illness, not just to resign themselves to death because of it.

    Thanks for sharing this post.

  3. As a pediatric oncology nurse practitioner, I have come alongside one too many families that have endured the loss of a child or adolescent and what I found was trust is founded upon honesty and honesty can be communicated with compassion without compromising reality.

    As an adult survivor of a childhood cancer, I demand the utmost candor from my providers out of respect for me as a person and my desire for truth. We are stronger than we are credited by many.

    Thank you SO much for this post: high caliber, high octane truth.

    Stephanie Zimmerman, MSN

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