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Hope and ‘false hope’: who benefits, who doesn’t

Giving or having false hope is a discussion that becomes way personal when you’re the person charged with telling it like it is. In the face of odds that seem overwhelming, should you or shouldn’t you offer hope or be hopeful.

Dr. Jerome Groopman, oncologist and author of ‘Anatomy of Hope: How people prevail in the face of illness‘, reminds that every disease has an uncertain outcome and ‘in that uncertainty we find real hope because a tumor has not read the text book.’

At life’s end, hope can cause turmoil and friction: when Liza’s single-mom friend was dying – but still hoped for a miracle – Liza was incensed: “She hasn’t acknowledged she’s dying. Until she can do that, I can’t be part of her support group.” Liza’s panic was more about her friend’s teenage daughter who, deceived by her mother’s hopeful outlook, also refused to recognize impending death. Liza’s assumption was that with hope ‘clouding’ realistic discussion, the daughter’s life would be in more of a shambles than need be and Liza would have to take care of her.

Hope can frustrating and exhausting, burdensome and sometimes even destructive: if you’re still hoping, how can there be final conversations satisfying the need for ‘closure’; how can arrangements be made, decisions addressed that, afterward, can divert dollars and time to lawyers and therapists.

A husband and children used the promise of hope to talk about plans for the next family vacation. So frustrated was their terminally ill mother that she screamed, ‘We’re never going to have another family vacation’. The family said they felt an unspoken tension lifted and their discussions shifted to their mother’s hopes for the family’s future.

When it comes to offering hope and hoping, whose wishes and whose circumstances are to be considered: the chronically and terminally ill or the living?

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  • VJ Periyakoil

    Kathy:
    Great post on a very important topic!I really liked the way you phrased “When it comes to offering hope and hoping, whose wishes and whose circumstances are to be considered: the chronically and terminally ill or the living?”. I also like Tasha highlighting the four stages of hope ( I pointed this out today to one of our fellows who liked it a lot).My two cents:IMHO, in the trio of stakeholders ( patient, family and the doctor) the big unspoken “hoper” ( made up this word :-) in the room is the doctor . I have cared for numerous terminally ill patients who are tolerating ineffective and burdensome therapies structuring their care plan to satisfy the fond hope of their physicians. One dialysis patient recently told me ” I want to stop dialysis, but I am so worried about how my nephrologist will take it”

    • Kathy Kastner

      Thanks Dr. Periyakoll!
      ‘Hoper.’ Perfect new word.

      Thanks so much for this insight. It’s one of those truths that rarely get articulated  – yet can make such a difference when the hopee (made up word- not nearly as good as yours) doesn’t have to bear the burden of disappointing the doc.
      Kathy
       

    • http://twitter.com/elderpages Natasha Beauchamp

      Many doctors say they don’t refer earlier because they don’t want the patient to give up hope. (!) I feel like information on reframing hope should be required reading in med school. Very compassionate desire on the part of physicians, but they can, inadvertently, end up denying their patients much needed support.

      There is an article and tipsheet on initiating the hospice discussion, based on the work of Dr. David Casarett at the University of Pennsylvania (http://seriousillness.org/demo/resources/medical.php). He suggests that doctors first have patients articulate their goals and hopes for the foreseeable future, then help them reframe those goals to align with the prognosis. Once the hopes/goals are identified, then the doctor can talk about services available via hospice that can support patients to achieve those goals. Part of what we need to do is give the “hoper” physician tools and strategies to start those difficult discussions.

  • http://twitter.com/elderpages Natasha Beauchamp

    These are great illustrations of a difficult ethical issue. Instead of an either/or (whose need for hope do we prioritize), perhaps we could re-frame hope so everyone was on the same page. For everyone needs hope.

    Classically we think of hope as a long, bright future. Cathleen Fanslow-Brunjes is a Clinical Nurses Specialist who wrote a book, “Using the Power of Hope
    to Cope with Dying: The Four Stages of Hope”.Although “stages” can be limiting, they do offer a simple way to present the concept of a shifting timeframe for hope:
       • Hope for a cure. “I’m not going to let this stop me.”    • Hope for treatment. “I think the radiation is really working!”   • Hope for prolongation of life. “I want to go to the family reunion.”   • Hope for a peaceful death. “I’m hoping for no pain in my final days.”

    What I have seen is that hospice patients and families turn their hopes towards things that are more achievable in the short term. Having relinquished the concept of a long, bright future, they focus instead on feasible goals: Go to a grandson’s graduation, finish labeling the photos in the album… And as the patient becomes more homebound, they become very “Be Here Now” and find happy anticipation in the simple joys of daily life: looking forward to the birds playing in the birdbath each morning, to a visit from a friend…

    Perhaps instead of “whose need for hope” do we look to, we could help both families and patients identify feasible goals, and shifting their timeframe closer and closer to the present day.

    • Kathy Kastner

      Thank you Tasha. Re-framing hope is so very much needed. Reading your comment, makes me think the conversation should/could be: ‘what do I hope to do with the life I have left. ‘

      I’ve recently seen Carnegie Mellon Prof, Randy Pausch’s Last Lecture. Randy, like Steve Jobs, was diagnosed with terminal cancer in the prime of his life, and he decided to record a lecture about his childhood dreams – as a legacy for his children.  http://www.youtube.com/watch?v=ji5_MqicxSo

      Kathy

    • Pam Leitner

      Very well put!  Our tag line reads “Hospice of the Upstate, A Different Kind of Hope”  That is exactly the message we are trying to promote….calling hospice doesn’t mean “giving up hope” but having the hope look different..hope to maintain dignity, live to the fullest, be free from pain and spend valuable time with loved ones.

  • http://www.amazeline.com/434 Loreen Lambert

    There’s this country that always and I do mean ALWAYS gives falls hope to its people. The culprit? Senators and city mayors. 

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