Today we should move forward on the list published in the NEJM on Bending the Cost Curve in Cancer Care. We’re up to point 7 in our discussion, what’s 2nd in the authors’ proposed changes in attitudes and practice: “Both doctors and patients need to have more realistic expectations.”
This point follows closely from the previous, that doctors need to talk with patients earlier on end-of-life issues. But the central issue here is that most patients with cancer are unrealistic about their prognosis, and that oncologists do a terrible job in correcting their misperceptions:
…According to one recent study, most of the patients with lung cancer expected to live for more than 2 years even though the average length of survival is about 8 months.3
Resetting expectations will be difficult. Tools are available to help the oncologist provide truly informed consent by sharing anticipated response rates, chances of cure (always near zero for patients with metastatic solid tumors), and side effects…Many oncologists do not have these skills,43 so use of a decision aid may help…
What they’re describing amounts to Lake Wobegon effect, from the patient’s perspective, and that may be fair enough.
But I think these authors are letting oncologists off easy. Why it is that they lack “these skills,” i.e. what it takes to help patients face reality? It happens yesterday I was reading Dave deBronkart’s book, How to Laugh, Sing and Eat Like a Pig, on his experiences as a patient with metastatic kidney cancer, and he cites a terrific, pertinent excerpt in Dr. Jerome Groopman’s The Anatomy of Hope:
Hope, unlike optimism, is rooted in unalloyed reality. …Hope acknowledges the significant obstacles and deep pitfalls along the path. True hope has no room for delusion.
Clear-eyed, hope gives us the courage to confront our circumstances and the capacity to surmount them. For all my patients, hope, true hope, has proved as important as any medication.
Groopman’s point is that real hope rests in reality.
Going back to the NEJM piece -
I don’t think oncologists need (or better, should need) decision aids to help them reset patients’ unrealistic expectations. What they need is time, and thoughtfulness, and the capacity to be genuinely empathic.
If our health care system promoted trusting, and ideally longer, relationships of cancer patients with their physicians, patients would be less fearful of hearing the truth, and their doctors would be less afraid to speak honestly with them. This would reduce cancer care costs by lessening futile treatments, and would improve the quality of the patient-doctor relationships in oncology, besides the quality of care, in itself, and patients’ experiences as they near the end of life.
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Elaine, I am looking forward to reading all your posts on this as well as the original report. You are singing my song. I will never forget an oncologist/hematologist who is something of a legend in my area, who lectured to my grad school class (PT) during our pathophys course. He said right off the bat that if you have not, as a clinician, faced up to your own mortality, to the reality of illness & mortality, you cannot possibly be useful to your patients when they are facing life-changing and life-threatening illness or injury. My own mantra, especially after being on the receiving end of oncology now, is that all clinicians really need to understand & fulfill the principles of informed consent. Truly, we are required to fulfill them just by being licensed to provide health care. And that means dealing with & helping provide patients with “unalloyed reality.” That is the only way a patient can step up the plate & make decisions. I had a recent conversation with a rad onc who said he didn’t go into the full array of potential side effects of cancer treatment with patients because he didn’t want to “frighten” them. Who is he kidding? We are already frightened from the moment we hear our diagnosis. What is far more frightening, I told him, is to develop problems & issues during and after acute treatment, about which we have not been informed, and then scramble to figure out what’s going on, who to talk to about them, or just to panic, or feel nuts because we do not fit the unrealistic expectations we have been led to have. That is not hope. That is cruelty.
You know what’s a bit ironic? There is a quite sensible booklet published by ASCO, called Managing the Cost of Cancer Care, that provides patients with a lot of practical tools. I certainly never encountered this booklet — or any discussion of cost — anywhere or any time when I was undergoing treatment. I wonder how many oncologists even know it exists or provide the booklet to their patients. Well, here’s the link:
http://www.cancer.net/patient/All+About+Cancer/Managing+the+Cost+of+Cancer+Care
Kathi,
Thanks so much for your thoughts on this, and for sharing the ASCO “considering costs” link.” I think that the pamphlets are fairly recent, which may be why you never saw this. It could also be the kind of things that oncologists give out only upon a patient’s asking. Lately, the economy and horrific co-pays lead patients to bring up the subject more and more.
Bravo! I too believe that more time spend between a patient and doctor helps build trust and a personal/intimate relationship. It allows for the walls to come down and gives patients the courage to ask hard questions, and to expect full answers. We also want to know what treatments cost and if we can afford them, or if such treatments will bankrupt us. http://whatstherealcost.org/video.php?post=five-questions