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How Would You Like to be Told that You Have Cancer?
I would like to start a followup conversation on a thread that I began September 25, 2005 titled "Telling 'Bad News': But There is More to Tell" The question is how can a doctor tell a patient that he or she has cancer without the patient "freaking out" at that moment and not being able to be educated by the doctor about the nature of the cancer, the various approaches to treatment and the outcomes. What suggestions would you give regarding how the doctor can meet the emotional needs of such a patient as well as to provide necessary education that will be needed for future decision-making? How would you like to be told that you have cancer? If this has happened to you in the past, it would be worthy for me and other physicians to listen to your story about how you were told and how you dealt with the information and education... and, of course, your suggestions. ..Maurice.
Graphic: Painting John the Baptist by Guido Reni (1575-1642)
5 Comments:
Been there, done that.
How patients react can partly depend on the individual situation. I had an aggressive B-cell lymphoma in the chest that was interfering with my airway and making it increasingly difficult to eat and breathe. At the time it was dx'd, I was frankly too sick to care very much.
A couple of thoughts:
- The "c" word was never actually used during the initial discussion. I was just told, "You have lymphoma." Some people might have assumed this meant they didn't have cancer. It's important to be clear and to do some teachback so you know the patient has some understanding of his/her dx.
- There's a lot of information to absorb, too much for a single visit. Ideally, there should be at least one followup consult to further explain the dx and tx options (although I recognize this isn't always possible).
- What is the patient's preference for how much information he/she wants? Try to ascertain this up front. Some people want it all; others want just the outline. I wasn't allowed to see my CT scans until tx was almost over - the dr.'s unilateral decision. Ask me first; I'm pretty sure I could have handled it.
- Dump the one-size-fits-all info packets. The least you can do is slip in a brochure on my particular type of cancer. Beware of the tendency to dumb it down; often this does not serve pts very well, e.g. the "radiation therapy is your friend" pamphlet I was given. Many patients appreciate honesty and dislike condescension.
- How do I get hold of the onc or nurse after hours? What if I have a question between tx sessions? Giving patients practical, helpful advice on how to communicate with you is always very much appreciated.
- The Internet is not your enemy. If you're worried about what I might read online, point me toward some of the most reputable websites.
- Expect the range of emotions. People will be angry, depressed, confused, numb, terrified. They will cycle randomly and repeatedly through all the emotions. Much of this is normal. Don't expect them to come to terms with everything right away or to progress through the emotional stages in orderly fashion. This process is messy, and it does not end the minute tx is over.
I can think of more, but this is enough for now. Thanks for the opportunity.
- the crabby skeptic
the crabby skeptic, I couldn't have summed up any better myself the wisest professional responses for the patient's benefit. Thanks and best wishes with respect to your disease. ..Maurice.
Another factor to consider when thinking about the matter of a patient being told that the patient has cancer is the "why me?" perhaps unspoken response by the patient. "Why me?" thoughts may actually lead to denial of the diagnosis and therefore interfere or inhibit the important education hopefully provided by the physician regarding the understanding of the disease and the future management. The physician should anticipate the possibility of "why me?" and if the patient doesn't ask this to the doctor, the doctor should, I suggest, ask the patient if the patient has any questions regarding why he or she acquired this illness. This may lead to further discussion of the patient's concerns regarding the diagnosis. This ventilation may be therapeutic even if the cause of the cancer was unknown and the patient's "why me?" could not be specifically answered. ..Maurice.
Why NOT me? I don't think I'm entitled to go through life unscathed by any form of heartache, so the "why me" question wasn't one I ever asked - and from talking to others, it seems many of them have a similar perspective.
However, there is a lot of erroneous information floating around, on the Internet and in casual discussions. Theories abound about cancer being caused by stress, by sugar, by a failure of religious belief, you name it. It can be an easy way to blame the patient for his/her disease.
Oncologists might be able to play some role in dispelling some of these misperceptions and helping people feel less guilty or less to blame for their dx.
Here's a radical idea: Why don't oncology centers solicit honest feedback from patients about these issues? And do it in a structured, ongoing way? I think they would be surprised at how much they can learn from their patients and the thoughtful responses they would get. Far better than trying to guess what patients want, yes?
Thanks for the good wishes. My dx is actually 15 years in the past so I consider myself cured (for now, anyway).
- the crabby skeptic
Yo Dr. Mo--
The Crab touches on this point, but my two cents is that "freaking out" is a totally understandable and normal reaction, and the phrase has a bit of a pejorative feel in your post. The question is not now a doc can tell a patient he or she has cancer "without the patient freaking out", but rather how a doctor can create a safe emotional environment in which his or her patient finds it safe to freak out after they've received freak outable news.
Somehow, I suspect that Maurice Bernstein the doc is a master at creating such a safe place, although that's only from reading your blog over the years.
Best, Billy
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