Wednesday, October 24, 2012

Most Patients with Incurable Cancer Think Chemo Might Cure Them

Deer Valley, Utah, from our lodge at the NPCRC retreat
I'm at the National Palliative Care Research Center's Annual Foley Retreat in Deer Valley, Utah - rough life of the researcher, I know - and all the buzz is about the study published today in the New England Journal of Medicine.

In this study, Jane Weeks and colleagues surveyed 1,193 patients with incurable stage IV lung or colon cancer receiving chemotherapy.  They asked patients if they thought the chemotherapy might cure them.  They then tried to figure out if certain groups of patients were more likely to think that chemotherapy might cure them.  The remarkable findings:

  • 69% of patients with metastatic lung cancer and 81% of patients with metastatic colorectal cancer thought the chemotherapy might cure them
  • Non-white patients were more likely to believe chemotherapy might cure them than white patients
  • Patients who rated communication with their physician highly were more likely to believe chemotherapy was curative

That last sentence is not a typo!  Phrased differently, patients who didn't believe chemotherapy would cure their disease rated their physicians as worse communicators.

Huh?

The study had no hidden camera in the room, so they can't tease out which factors led to these communication ratings.  Plausibly, it could be that patients rate optimistic (but false) physicians communication highly, or they rate pessimistic (but true) physicians poorly, or both.

So what should we take away from these findings?  I'm interested in your take (in the comments); here's mine.

  • Denial is not just a river in Egypt.  It's an incredibly powerful coping strategy, as articulated eloquently in the accompanying editorial by Tom Smith and Dan Longo
  • However, patients often make different decisions if they understand their prognosis.  They're more likely to forgo chemotherapy if it has no chance to cure them.  We have an obligation to offer patients accurate honest prognostic information, and realistic assessments about the possible outcomes of treatments.  Saying the disease is incurable and immediately moving on to discuss chemotherapy regimens is poor care.
  • Tying physician reimbursement to patient satisfaction may create perverse incentives for physicians to give patients a false sense of optimism that treatment may be curable, so they'll receive higher ratings and more $$$.  
  • Palliative care clinicians can teach oncologists how to have honest conversations with patients about prognosis and the outcomes of treatment, in a way that enhances trust and esteem. This is palliative care 101: Breaking Bad News.  Palliative care can and should play a major role in training physicians to have these discussions (see this terrific interview with the American Cancer Society's Rebecca Kirch urging a greater role for palliative care based on this study).  And ideally, a patient should be referred to a palliative care clinician or hospice soon after diagnosis with these advanced cancers.
No matter what we do, some patients will continue to believe chemotherapy will cure them of their incurable cancer.  That's not the point.  

This is about having the opportunity for informed decision making.  Every patient should have the opportunity to receive accurate information about their prognosis and outcomes of treatment, delivered in a compassionate manner.  

That's the point.

Addendum: I just talked to Tony Back about these results, and with his permission would like to paraphrase his thoughts about the physician communication rating.

Essentially, he said the satisfaction with communication questions were asking the wrong question at the wrong time.  If your doctor tells you the bad news that your cancer can't be cured with chemotherapy, what do you expect if you ask them about satisfaction after the encounter?

But if later, when they've had time to look back, if you asked them, "Did you doctor help you prepare?" you would probably find that those who had openly and honest conversations would rate their doctors favorably.  And that is the more important metric, asked at a more appropriate time.

by: Alex Smith @alexsmithMD

8 comments:

Holly Will said...

As a hospice worker and spouse of a colon cancer patient, I believe it's imperative that physicians provide honest information regarding intent of chemotherapy and possibility of cure.
Patients and their families have a right to know, plan, and make informed decisions about their treatment or lack thereof.

Marian Grant, NP said...

I think part of the confusion is, understandably, that the same treatments, chemotherapy, radiation, surgery,etc., are used for both curative and palliative treatment. And adding "palliative" to the latter probably doesn't help people to better understand what their expectations should be. Since language matters, maybe we should come up with a different term for such "palliative" treatment. Noncurative anyone?

Alex Smith said...

Agree with Marian that the language we use contributes to the confusion. This is similar to the issue with early stage prostate cancer - it probably shouldn't be called "cancer", because once you call it cancer people want it out, even if that's clearly not the best approach!

I agree palliative chemotherapy means different things to different clinicians, and nothing at all to most patients. Non-curative chemotherapy is an interesting idea. I worry it's too in-your-face for the oncologists. It is also a label based on what it doesn't do rather than what it does do, and I can't think of another situation where we label a treatment by what it doesn't do.

Maybe "symptom-directed chemotherapy"?

George Handzo said...

I agree with everything in the post and comments. We always need to be looking for better language to communicate more clearly with patients. But as a chaplain who worked with advanced cancer patients for 20+ years, I think it is often more complicated. My experience is that many patients need this denial to stay engaged with life and will defend against information to the contrary even to the point of changing doctors. The vast majority of them come to the "truth" when they are ready and without apparent emotional or spiritual distress. Now, this absolutely does not mean we shouldn't communicate the facts clearly and completely. It does mean that patient's apparent failure to take in facts is not necessarily a communication failure. It may mean that we have to be alert for signals from the patient that they are now ready to hear the prognosis and to repeat the conversation at a later time.

Alex Smith said...

Good points George, appreciate your insight. Tom Smith, at the end of his editorial, similarly argues that clinicians need to repeatedly offer truthful information.

This idea can be taken too far (although I don't think this is at all what you're suggesting). As my mentor used to say, "he doesn't need the mirror held in front of him all the time, Alex."

George Handzo said...

Alex-
I agree. I think one of the great skills of any clinician, irrespective of discipline, is to be able to sense when is the time to press forward and when you are about to cross the line to a place where the patient will shut down or even resist. In the case of chaplains that is about deciding whether to ask the next question that could lead the patient to a deeper level in discovering their spiritual resources but also might lead them at the same time to a very sensitive or scary place that they might not be ready to look at.

CCP said...

An interesting related issue about confusion is that when my mother was receiving palliative radiation for lung cancer that had spread to her spine, the local hospice agency refused to enroll her as a patient until the treatment was completed.
They had already interviewed her and us and everyone had agreed that she would become a hospice patient and receive only palliative treatment, but the hospice admission nurse said that she could not be enrolled while receiving radiation therapy, despite my reminding her that the therapy was only palliative--designed to preserve function and reduce intractable pain, and that the cancer was clearly understood by all to be incurable.

Pharmacy Stores said...

Chemo might save cancer patient if it diagnosed in first and second stage if it is final and third stage then it is not possible to save the patient.