Monday, June 30, 2008
Prognostic awareness in CHF
JAMA has a really interesting article comparing heart failure patients' perceptions of their prognosis with their 'actual' prognosis. 'Actual' in quotes because they looked at their predicted survival with the Seattle Heart Failure Model and not the cohort's actual survival (although they tried to look at that as best they could.) The study involves ~120 patients (median age 61 years) from a single US cardiac center (Duke) with a broad range of heart failure severity (about half NYHA III-IV). They were asked in a couple different ways how long they thought they'd live; this was compared with predicted prognosis.
Median self-reported anticipated life-expectancy was 13 years, whereas the median predicted survival by the SHFM was 10 years, and 60% of patients thought they'd either be cured or have a normal life expectancy. Overestimation of prognosis was not associated with actual prognosis, nor with reporting that one's physician had discussed prognosis with them (which was ~2/5 of the cohort). In multivariate analysis younger age, lack of depression, and worse heart failure class were all associated with more extreme over-estimation of prognosis. (This, then, represents another study finding that depressed medically ill patients may have more accurate understanding of their illness than non-depressed patients.). The sickest, class IV, patients particularly overestimated their prognosis: as a group they gave a number similar to the overall cohort's 13 years (whereas their SHFM prognosis was ~4 years).
Looking only at those who actually died during the (median of -) 3 year follow-up from the study (about 1/3 of the patients): the authors don't give their actual self-reported prognoses, but just note their overestimation was of a similar proportion to the overall cohort's (i.e. by ~40%).
That patients with CHF overestimate their prognosis is not much of a surprise; that over half of them didn't appreciate that their disease is life-limiting is not surprising either, although more troubling (to be fair this study looked at everyone at this center, including those who might have transient/reversible cardiomyopathies, although this was likely a tiny percentage of the overall cohort). The number of patients with relatively short prognoses (~few years or less) is small in this study, which makes it tougher to know what this says about patients likely to be 'of interest' to palliative care clinicians, other than reinforcing our already-established impression of generalized prognostic ignorance. Most disturbing to me is the fact that even those patients who said their docs had talked time with them were as wrong as everyone else, making one wonder what their docs said vs. what these patients heard/chose to hear/chose to believe/etc. In my experience the biggest 'hurdle' is just helping patients appreciate that their class III-IV CHF is a life-limiting disease.
There's also an accompanying editorial, which asks the obvious question of Well, why do these patients need to know their prognosis?
However, a relevant question is "Why is it important for a given patient to be aware of precise quantitative prognostic information?" There are several treatment decisions for which this is important—if anticipated survival time in heart failure is short (<1> referral for heart transplantation or mechanical support needs to be considered. Similarly, referral for hospice or palliative care would be greatly facilitated by an accurate estimation of even shorter-term survival (approximately 6 months or less); conversely, if the expected survival time is at least 1 to 2 years, referral for implantation of a cardioverter-defibrillator would be appropriate. However, beyond these specific examples, no other therapeutic interventions for heart failure exist for which precise knowledge of the likelihood of survival matters in the decision-making process.I've been thinking of this too, and I don't have any great answers to this. Having a sense of one's prognosis certainly becomes more important the shorter one's likely time is, and one could argue (although I have no 'data' to back this up) that knowing that it's likely to be a few years or less (like the Class IV patients) rather than 13 could make a major difference in how one spends one's time and I think should be disclosed (to most patients). But for patients with longer prognoses, what exactly is the impetus, other than if the patient wants to know him or herself? I'm curious as to readers' thoughts about this....
(See also the comments on another recent post about prognostication in CHF if you're interested.)
Allen, L.A., Yager, J.E., Funk, M.J., Levy, W.C., Tulsky, J.A., Bowers, M.T., Dodson, G.C., O'Connor, C.M., Felker, G.M. (2008). Discordance Between Patient-Predicted and Model-Predicted Life Expectancy Among Ambulatory Patients With Heart Failure. JAMA: The Journal of the American Medical Association, 299(21), 2533-2542. DOI: 10.1001/jama.299.21.2533
6 Responses to “Prognostic awareness in CHF”
July 01, 2008
I wonder how much denial factored in to the responses (ie, the folks that thought they'd live 13 years, when prognostically it would be closer to four).
I'm a firm believer that patients hear what they want to hear, although I'd personally want to know if it was truly a short time.
Interesting.
July 01, 2008
It is very important that we ask our patients how much information they would like to have; but even in the case of a person not wanting "too much information" if we have knowledge of a limited life expectance based on likely disease progression, the least we can do is discuss advance directives. This all comes back to informed consent as well. If the person with a life limiting condition does not have all the information necessary to make fully informed decisions....are we just plowing ahead with recomendations without giving choices? There are always options.
July 01, 2008
Agree all around. Knowing one's prognosis is fundamental to informed consent in the truest sense of the word.
July 01, 2008
Overall, I think these patients predictions were pretty darn precise in comparison to the model. 13 years vs 10 years is at least it's in the right ballpark (one to a few decades). I don't see how either prediction would change how you'd approach life and medical decisions.
It's also important to point out that both the model and patient estimates are both just that: guesses. It's difficult to gauge either one's accuracy based on this study. For the more severely ill patients who's prognosis was formulated to be 4 years by the model, I think it's only fair to allow them the space and freedom to disagree with the model's predictions if they choose. Whether you're a computer or not, I think it's pretty difficult to guess what's going to happen 4 years from now.
I strongly agree with Dr. Rosielle that the real value of this article is its affirmation that many CHF patients do not know that their disease may be irreversible and life-limiting. This is the aspect of the article that I feel needs most urgent addressing. This is a hot-button issue for me, for I feel that it is paramount for all licensed and boarded physicians in this country to be accurate with the purpose of their medications and other interventions as well as be clear with their diagnoses and information regarding what can and can't be fixed. If we don't do that, we run the risk of practicing quackery.
July 01, 2008
I agree that a patient knowing they have, say 5 years vs 10 years to live won't make much of a difference in their their course of treatment. I am a strong believer in giving patients accurate information if their life expectancy is short so they can make informed decisions about their care that are right for them.
That being said, denial is a strong, and often quite effective, coping mechanism and if it's the method a patient chooses to deal with their illness who are we as medical professionals to take that from them. I agree with Sue that asking a patient how much they want to know is a good idea. I'm continuously surprised by how many patients I meet that simply don't want to know.
July 02, 2008
No doubt that choosing not to focus on or acknowledge one's prognosis can at times be quite an adaptive, good thing (hell all of us walk around all the time in a sea of lies we tell ourselves about our futures and our ability to control what happens to us, etc.), although as one's prognosis worsens the 'need' to know it becomes much more acute and important for medical decision making, 'true' informed consent, etc.
There has been some research, although I can't quite remember which patient population, about who wants to know their prognosis and my memory is that those who thought their time was relatively short / self-identified as having a life-limiting illness were much more likely to want explicit prognostic information. I think this gets back to what Sean was saying - that the first and perhaps most important step is letting patients know the actual nature of their illness (progressive, incurable, with periods of acute worsening followed by recovery).
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