Getting your doctor(s) to talk to you about “the bad news”


There is an interesting article in the August 1 issue of the Journal of Clinical Oncology on why physicians and other health-care professionals don’t like to talk to their patients about “the bad news” when it comes to prognosis.

The entire text of this relatively brief article by Mack and Smith is available on line, as is a separate commentary about it on the Medscape Oncology web site.

The bottom line, as expressed by Mack and Smith, is that (based on research carried out primary among cancer patients and their physicians) there are five common reasons why doctors are less than enthusiastic about discussing prognostically poor information — but these reasons are all based on misconceptions held by health care professionals:

  • The misconception that negative prognostic information will make people depressed … But Mack and Smith report that: (a) in the Coping With Cancer study, patients who reported having end-of-life discussions had no higher rates of depression or worry and had lower rates of ventilation and resuscitation and more and earlier hospice enrollment, and that (b) more aggressive medical care at the end of life was associated with a higher risk of major depressive disorder in bereaved caregivers.
  • The misconception that negative prognostic information will “take away hope” … But Mack and Smith argue in favor of evidence suggesting that hope is actually maintained even after truthful discussions that teach patients that there is little to no chance of any cure.
  • The misconception that participation in hospice or palliative care reduces the probability of survival … But Mack and Smith accurately point out that multiple studies have shown that survival is equal or better with hospice or palliative care.
  • The fact that we can really never know the prognosis accurately for an individual patient … In this case the perception is correct; the misperception, say Mack and Smith, is that a doctor can (let alone should) use uncertainty as an excuse for avoiding reality. Clinicians are (or at least should be) eminently capable of formulating a reasonable prognosis or range of possible outcomes that can help any patient’s understand something approaching the truth about his (or indeed her) personal situation.
  • The misperception that discussions about prognosis are culturally appropriate (at least for patients of some ethnicities) … in this case, Mack and Smith note that it is certainly true that — in general — discussion of a terminal prognosis is less commonly accepted by people of some cultures than others. However, these conversations are not between a health professional and a culture; they are conversations between a health professional and an individual patient of a specific ethnic background who may or may not conform to his or her “cultural norm.” If the health professional is in any doubt about how the patient might react to such a conversation, he or she can and should simply ask the patient for his or her preference about whether to have this conversation.

At least as far as Mack and Smith are concerned, the real reason why health care professionals avoid conversations about “the bad news” is simple:

  • These conversations are hard for health care professionals themselves, and they just don’t like to have to have them … So, just as we all tend to avoid the things we don’t really like to have to do, they avoid them whenever possible.

No patient or caregiver should be forced to listen to a one-way “conversation” about their poor prognosis if they don’t wish to have this. Equally, however, no doctor should be making the assumption that a patient with a severe case of prostate cancer doesn’t want to “hear the truth.” This is just one more place where the wishes of the patient should be paramount.

If I want to hear the doctor’s best guess about my life expectancy, my wishes should take precedence over my doctor’s discomfort about the subject matter and its implications. Equally, if my partner/spouse/caregiver doesn’t want to hear that conversation (or the implications) I and my doctor should make every reasonable attempt to avoid distressing her/him by forcing her/him hear it. What is more, particularly for health professionals like oncologists and oncology nursing staff, who are often faced with patients who will die of their cancers (prostate cancer or any other) becoming knowledgeable about how to have these conversations in an appropriate and honest manner should be a critical component of their training.

6 Responses

  1. I would settle for hearing any news — good, bad, or otherwise.

    I think I understand the reasons why they don’t want to share. However, it is very frustrating for me to have to make decisions about my life based on information gleaned from the internet and my interpretation of my disease when the doctors have seen many many cases and certainly have a better idea of what could happen, but then refuse to share!!

  2. Mike I see something a bit of the opposite of this post frequently in prostate cancer. Running a live support group and moderating an online group has no differences on this observation.

    (1) A patient comes online with a PSA of 3,216! His urologist insists he has never seen such a reading and outlines that this patient needs to get his “things in order” as the doctor suspects that this patient has little more than 6 months to a year to live. 6 years later he is coming with me to DC for the ZERO Summit with a PSA less than 6. You’ll be meeting him soon and he looks great.

    (2) A gentleman I know has battled prostate cancer for 12 years: stage T3b like myself. He is told after a recurrence a couple years ago that there are a lot of exciting things out there and he can plan to be around for quite some time. He survived less than 2 years. Left us last Tuesday.

    I can name quite a few more but I think I get my point across. You’ll remember that last year I went to DC and visited a friend in MD and just wanted to say “Hi” as he had long battled the disease and had thrown in the towel and started home hospice with just a few months to go. He’s still around and posting and it just shows that prostate cancer is not easy to predict until the very last stages, and even then it’s not a prediction I would bet on. I cringe when I hear a “moderate” or “intermediate” case come in having been told his days are limited … but for some strange reason there’s someone out there in the clinical side that insists on making these predictions even as inaccurate as they can be. Most diagnosing doctors, it seems to me in prostate cancer, are encouraging treatment or “else” something bad will happen soon.

    My point is perhaps it’s better to say nothing at all than to say something that has a high degree of inaccuracy such as predicting the mortality of, or the prognosis of a prostate cancer patient.

  3. Tony:

    Let’s be careful to differentiate between stupidity, bad guidance, and good guidance.

    Your first example is one of crass stupidity. The first thing anyone with half a brain should be saying to a man who presents with a PSA of 3,000 but limited visible mets and either no symptoms or few symptoms is, “I can’t make any reasonable prognosis until we see how you respond to initial treatment. It could be bad; it could be good; it could be anything!”

    Your second example is a difficult one. Does the patient want optimism (“There are a lot of exciting things out there and I think you can plan to be around for quite a while yet?”) given then he has already stuck around for 12 years or pessimism (“There are a lot of exciting things out there but I have no evidence that any of them will keep you alive for long, so make sure you’ve written your will”) or something in between?

    Your third example just happens; we all thought this individual would have taken his leave by now, but either his body or his mind just isn’t ready. (And I certainly don’t think that starting home hospice was “throwing in the towel” in his case. I think it was a good decision and may have a lot to do with why he is still with us.)

    Prognosis is a skill based on likelihoods (just like playing blackjack). Physicians can rarely give accurate prognoses (and they can’t tell you what the next card out of the deck will be either), but that doesn’t mean they can’t give good guidance. Sometimes that good guidance is, “I haven’t got a clue. What do you want to be able to plan for?

    Ask Ralph Valle or Chuck Maack. I’ll bet you a sack of rotten corn to a dud penny that neither of them was expecting to be around in 2012 … and yet here they still are!

  4. I demand full available knowledge from any physician. I can get upset when I realise that I have not been given such knowledge. For me, that’s far worse that being told the full truth, however bad it is. Unless I’m missing something, there is a difficulty with accurately conversing about prostate cancer: in some cases there is little to be said with any degree of certainty, due to paucity of reliable trial results. In such cases — I am one — I demand to be told just that.

  5. I thought the new drug Zytiga would be the answer to my recent dreams. But alas, on reading the whole article on this “wonder drug” it turns out that the average increase in life expectancy is 4.1 months. No one doctor will give me a life expectancy until I try out their varied pills and potions to stop the insidious disease. Then it is too late. It is evident they always have hope and until pushed will not talk about the negative side of things (and then only a brush-over of the facts). I reach my own decision and the outlook is not good and so I go about things as much as I can, but I cannot go a day without concerning myself about it; many times a day looking for that magic cure. As long as I can control the pain, move around, and control my constipation I don’t have a care in the world.

    Barry

  6. My first urologist had a unique approach. He didn’t say much at all after my biopsy report. He literally gave me the report and told me to read it out loud. My wife was with me.

    The report talked of Gleason scores, cores, and a ton of terms that were naturally completely foreign to us. I don’t know if he was not used to such bad news for a relatively young guy or he was just a jerk. I never saw him again.

    Every doctor is different on how they handle bad news. I am fortunate now. I have a team of doctors that provide a great balance between realism, hope, and optimism.

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