HOW LONG DO I HAVE, DOCTOR?

Death Foretold: Prophecy and Prognosis In Medical Care is  a book I learned about from one of those perenially informative  articles in the New York Times medical section. Even though I’ve just barely begun to read it, there is a scary rate of confirmation of my own conclusions about what our doctors do and do not tell their cancer patients about their condition. I learned, for instance, that:

A recent five-year, thirty-million dollar study showed, sadly, that even though doctors in the study  were given comprehensive information on their patients’ prognosis and preferences for care, the physician acknowledged  or remembered receiving the information only 59% of the time– and reported discussing this information with the patient only 15% of the time!

The patients themselves confirmed a low rate of discussion with their doctors about their prognosis and their preferences for care; only a minority reported having a discussion with their doctor– despite the fact that the patients in the study were seriously ill with a high risk of death and despite the fact that a majority said that they would have welcomed such a discussion. Sadly, most of the patients in this study went on to experience deaths that, as the investigators documented in rich detail, were very unsatisfactory.

The author goes on to state a very alarming conclusion from his exhaustive research:

When therapy is available, physicians will blithely ignore prognosis.

Taken to its logical end, this mentality leads to patients being treated–even when that treatment is known to be futile– until the moment of their death. Yet the author reflects that “death is increasingly viewed [in modern society] as a passage that can be actively anticipated and therefore managed. To enact these popular visions of death, however, patients must rely on reasonably accurate prognoses from professional physicians.”

To contrast the patient’s need for an accurate prognosis with this quote from an internist is to begin to comprehend how the doctor’s mindset often results in his concealing or avoiding the sharing vital information with his patient :

I get so damn nervous when I have to make a prediction. I feel as if there is no way that I can be right and that if I make a mistake my patients will be angry or hurt. My colleagues would think I was foolish to hazard a prediction in the first place. The way I see it, the only thing I can say for sure about prognosis is that you are bound to be wrong– unless you are so vague that the prediction is meaningless. And people will blame the doctor no matter what: if he predicts a good outcome and a bad one occurs or if he predicts a bad outcome and a good one occurs. You just can’t win.”

The net result of this kind of physician aversion to prognosis is that the patient is sadly, vitally dis-served. My takeaway, based on John’s experience with his doctors (and now very strongly re-inforced by this book) is that cancer patients who really want to know what the future is likely to hold for them must strongly take the initiative in conversations with their doctors, and continue to press until they receive the information they need and have the right to receive.

Stay tuned for more on this topic as I make my way through this book.

 

About surfingon

I live in Hawaii. I surf in the winter and swim in the summer. I have been a hospice volunteer with a contemplative-care oriented hospice for 25 years have been part of their team that trains new volunteers for the last 9 years. I have walked the colon cancer path with my beloved husband these past 5 years. He died very peacefully in April 2009. I now seek to share what we learned, to shed light on the many dark corners of this often mystifying, heartbreaking and heart-opening journey.
This entry was posted in doctor patient communication, doctor patient relationship, end of life, Uncategorized and tagged , , , , . Bookmark the permalink.

One Response to HOW LONG DO I HAVE, DOCTOR?

  1. Charlotte Flavin says:

    Good introduction to the topic, Rachel. Will wait to hear/read how the book develops. . .
    Hasta luego,
    Charlotte

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