What patients want to know about their prognosis

Everyone immersed in the culture of medicine knows that physicians sometimes defer the discussion about prognosis to patients who are battling a life-threatening illness.  Everyone, that is, except the patient.   We arrive on your doorstep believing that our presence indicates the obvious.  So, how are we to know that we have to ask for something as life altering and important as a prognosis?  Deferring to the patient for prognostic discussion occurs among health care professionals so much so that it has become lost on the most important person of all.  The one who has the illness.  The one who may lose his or her life, and the one who needs to make decisions based on the facts — not false hopes or useless treatments.

Not every physician elects to leave the discussion about the prognosis for a life-threatening illness up to the patient, but far too many do.   Putting off the necessary conversation does nothing to soften the blow that for some, will inevitably come later in the disease process.   It is too late when it is time for hospice.  Patients no longer have the time or energy to carry out that which is important to them, and they will go to their grave in angst over what could have been.

So, what do patients want from their physicians when communicating prognostic information?  Unless we have informed you otherwise, we want your total honesty.  Tell us what you know.  We do not want to hear that you cannot predict exactly what will happen during the course of our illness.  That is not what we are asking.  We want to know, statistically, how does this disease at the stage we are presenting, usually unfold.  We understand that you cannot provide a locked-in concrete answer.  We are still dealing with probabilities in the early phase of our illness.  We need to hear what could happen and what is likely to happen, with no guarantees, in order to make preparations for what could either be a negative or a positive outcome.

If patients want the truth, and they do, then they also want their own doctor to be the one to deliver it.  Leaving this discussion for a resident physician is not something that we will appreciate unless the resident physician has been our primary caregiver.  First of all, if we hear a poor prognosis from someone less experienced than you, we are not going to believe it anyway.  We do not want it to be true, and if our attending physician has not mentioned it, then perhaps this less experienced physician is mistaken in their assessment of our condition.  Likewise, if we catch you by surprise during morning rounds having received such a disclosure from an intern or resident, do not try to minimize the disclosure unless it was overstated.  As dismayed as we may be, we do not want you to change the facts to make us feel better.  We trust you, and the problem with falsehood is that once it is discovered, we can never believe anything else you say.  That would effectively be the end of our doctor-patient relationship, and if we are in crises, that is the last thing we need at the moment.

Choose your words carefully.  Once spoken, you cannot take them back.    At a local community hospital where I was once employed, I overheard a physician tell a patient that she had to stop chemotherapy.  When the patient asked what else the doctor was going to try, he said, “Nothing,” and abruptly left the room.  The patient burst into tears.  As patients, we would prefer something a little more subtle.  In contrast, it was once my good fortune to hear an experienced oncologist say the following to a dying patient:

You aren’t responding to treatment as well as I had hoped, and the chemotherapy is making you very sick.   Let’s discontinue treatment for now until you are feeling better.  We can revisit your medical status in a week, and we can talk about your options then.

If you have already engaged the patient in an honest assessment about the progression of their disease, the meaning of the above conversation will not be lost.  Over the next week, we will go over the possibilities in our own mind.  Although we may be disappointed, it will come as no surprise if you recommend that no further curative treatment be pursued.  The one to two week period between conversations gives the patient time to slowly absorb the shock and to come to terms with the realization that they may be losing the battle with their disease before they have to face the concrete determination.

Consequently, what we want most during the course of our illness is YOU.  We acknowledge that you are only one person, we are not your only patients, and there are only so many hours in a day.  But when things go south, we want our own physician.  We understand that we will not always have the advantage of your physical presence, but we want to know that you are up to date with our medical status.  If we are in the hospital, we want to know that the culture of collaboration between you and your colleagues is such that we can rely on them in your absence.  Patients want to know, that in your absence, every aspect of their care will be covered.  They do not want to have to worry that another physician, who doesn’t know them, will arrive and disregard your orders.  If you strive to do the very best that you can, it will be enough.  You will have your patients’ loyalty and gratitude for your efforts, regardless of their personal outcome.

Linda Haller is founder, Examining the Examiner.

Image credit: Shutterstock.com

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