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Less Is More
January 2019

Softening Our Approach to Discussing Prognosis

Author Affiliations
  • 1Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, Massachusetts
  • 2Ariadne Labs, Brigham and Women's Hospital and Harvard School of Public Health, Boston, Massachusetts
  • 3Division of Palliative Care and Geriatrics, Massachusetts General Hospital, Harvard Medical School, Boston
JAMA Intern Med. 2019;179(1):5-6. doi:10.1001/jamainternmed.2018.5786

We tend to cringe when we hear “So, how much time do I have, doc?” Yet prognostic discussions are a core skill of being a compassionate physician, preparing patients and families to live with serious illnesses, and enabling informed medical and personal decisions. The first challenge of prognostic communication is the inherent and unavoidable uncertainty, that the exact trajectory of health (or illness) is unknowable. Thus, clinicians are inaccurate prognosticators, overestimating by up to a factor of 5.1 We have difficulty making accurate short-term time-based prognostic estimates for common diseases, such as congestive heart failure, and can be off by as much as 1 to 2 years.2 Compounding this uncertainty, we worry about upsetting our patients with too much or unwanted information. On one hand, patients say that they want to know their prognosis and report that it is one of their highest priorities.3 On the other hand, patients also say that they are unsure about how much they want to know and give mixed messages about how much they want to talk about it.4 As one patient said, “I ask the question, and then I don’t want to know the answer. But the question is out there, and then I am devastated.” Uncertain about the information and not wanting to cause emotional harm, we hesitate to talk with patients about their futures. We watch colleagues hesitate with statements such as “Well, I don’t have a crystal ball” or “You know I can’t tell you that,” or “Only God knows,” or “We are very bad at predicting this sort of thing.” But we also worry that our patients do not have the prognostic information that they need, however imprecise. And perhaps worse, we worry that patients perceive that we cannot handle the tough discussions they need from us.

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    4 Comments for this article
    Discussing Prognosis
    James Gordon, MD | UW Medicine/Northwest Hospital, Clinical Associate Professor of Neurology
    I commend and thank the authors for a sensitive and insightful discussion of communication about prognosis.

    Prognosis is contextual -- not just a matter of expected outcome, but also, and sometimes only, a matter of expected course. Discussion of prognosis serves diverse purposes under diverse circumstances. Sudden catastrophe, for example, mandates immediate life and death decisions, while chronic illness mandates long-term planning. Catastrophe may, with aggressive treatment, evolve into chronic illness; neurological catastrophe almost always involves months or years of arduous rehabilitation with uncertain outcome and implications -- personal, financial, and other -- that vary vastly among
    different patients. Chronic progressive illness often pitches downhill on a steepening course pitted with crevasses and culminates in a catastrophic finale. And so on.

    Modern medicine has, for better and worse, made the concept of "natural history" a thing of the past. When life will end may not be predictable, but how things are likely to go in the meantime, less so. Discussing prognosis, we should be careful to acknowledge that the subject is, to paraphrase Eric Cassell, not diseased bodies, but suffering persons, each of whose needs ought not be presumed. The language of personalized hope and worry constitutes an important communication technique, along with asking (not telling) and sitting (not standing), to position us alongside the patient when communicating prognosis or providing guidance. But we must take care not to confound our idea of the kind of nondirective discussion a patient ought to want with the actual discussion a particular patient or family does want. We must not forget that there are times and cases when a direct, compassionate description of the most likely course or when the offering of direct, compassionate advice is the kindest, least confusing, and most helpful way to proceed.
    Yes, and...
    StepheN LibeN, MD | McGill University
    While the pairing of "I hope" with "and I worry" is surely helpful in some situations, it may not be for all.
    When the family wants "everything done" - yes to CPR and "anything" to keep their family member alive even in the face of a catastrophic illness - In that case, is it being honest and helpful to say "I worry ..." when what I mean to say "to do this thing you are insisting on to your family member (CPR etc...) is to prolong suffering and I
    myself am in moral distress over it?"

    I hope this approach can add to the ways we may approach these issues, and I worry that it may oversimplify and or placate family members at the expense of added unnecessary suffering of the (non-verbal) patient.
    Declining HEALTH and the finite certainty of its ending
    Paul Nelson, M.D., M.S. | Family Health Care, P.C., retired
    For a person's or their Family's conversation about the impending end of the person's life, a quotation from Maya Angelou has always seemed most prescient. She said: "I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel."

    Ultimately, neither you or I would want to be a burden or experience uncontrolled pain at the end of life. This applies to both you and I as well as our families. As for the linguistics that apply, it will be different for every
    person and their family based on all sorts of confounding characteristics. And, fundamentally, the conversation must be based on trust, cooperation and reciprocity. The outcome from this conversation still depends on "how you made them feel."

    The two attributes noted above are probably most important for you and I. I do not want be be a burden to myself or my Family. And I do not want to experience uncontrolled pain. These two seem most important for accomplishing the ideals of Maya Angelou regardless of any other content during an end of life conversation.
    Excellent discussion
    Arthur Sands, BS, MD | Retired family MD
    Agree completely with this very reasonable approach to communicating the prognosis of serious diseases. It is very important to give information that is factual but also important to not abandon all hope and provide measures to make the best use of a variable future !