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| Photo Copyright Annie Levy, 2008 |
Sorry, stuck on the Princess Bride references.
At our most recent geriatrics journal club we discussed a terrific article by Lucas Zier (first author, UCSF internal medicine resident), Doug White (senior author, Pitt), and colleagues. The article is titled Surrogate Decision Makers' Interpretation of Prognostic Information, published in Annals of Internal Medicine.
Here is the setup. You're working in the ICU. You want to communicate a prognosis to the family of a patient who is so ill he cannot make decisions. You sensitively state the facts: the patient has less than a 5% chance of survival. Or perhaps you say "he will definitely not survive." The family confers, and decides that they want to focus on keeping him alive as long as possible. You wonder to yourself, "I know what I said. What did they hear? Do they understand that he's dying?"
In this study Zier and colleagues surveyed surrogates of seriously ill ICU patients. Researchers presented surrogates with a range of possible prognostic statements for a hypothetical patient - NOT their loved one - and asked them to mark what they interpreted the statement to mean on a scale from 0% to 100% chance of survival. Results were astounding:
- For optimistic statements, such as "He will definitely survive," or, "He has a 90% chance of surviving," almost all surrogates generally indicated agreement with the statement's intent, interpreting the statements to mean >90% chance of survival.
- For pessimistic statements, such as "He has a 5% chance of surviving," or, "He will definitely not survive," surrogates were much more optimistic, with mean interpretations in the 25-30% survival range, and some surrogates indicating 95% chance or greater likelihood of survival!
- When these findings were shown back to surrogates, they were at a loss for how to explain their optimistic responses to the grim prognoses.
What to make of this? The authors point out that there is much more to communicating accurate information than misunderstanding of numerical risks. Psychological factors play a huge role in how patients hear and interpret information.
I remember my first day rotating on the palliative care service at the Brigham and Women's Hospital. Susan Block was holding forth about how dying patients and their surrogates, when confronted with a grim prognosis, sometimes simultaneously believe contradictory information: most of the time they hope for survival, but at some level, they recognize that they are dying. The study by Zier and colleagues seems to hint at such a complex psychological picture. My guess is that forcing surrogates to assign a single number to such a complex psychological phenomena is where the study ran up against the limitations of its methods.
What to take away from this? Telling a surrogate that the prognosis is grim is not the same thing as surrogates understanding that the prognosis is grim. They may take away a substantially more optimistic message than intended. This is important information to understand and teach. The question is: what to about it?
Here is where I disagree with the conclusion of the article: that these psychological biases are an obstacle to be overcome, or remedied, because "not all optimism is ethically benign." I worry that undermining the optimism at a vulnerable time could be harmful to the surrogates, and potentially detrimental to the relationship between ICU providers and surrogates. Ultimately, this sort of approach may hinder rather than facilitate communication.
Rather, as Susan Block taught, our job is to prop up those psychological mechanisms that are supporting the surrogate, helping them to cope with a dreaded event, even as we're preparing them in case things don't go as they hope by providing realistic information. Even if these goals seem at cross purposes. A complex response to a complex psychological state.
by: Alex Smith
9 comments:
I wouldn't frame surrogates' optimism in ethical terms, benign or otherwise. There are so many reasons why surrogates might respond as they do in these highly complex circumstances. For example, even when they 'know' the prognosis is dire, cultural exceptionalism might lead them to believe that their family member is the one who will be the "long shot". In any case, why should we expect them to be fully correct when interpreting risk statistics in such emotionally fraught situations? Another recent Annals article discussed the difficulty some primary care physicians seem to have with statistical interpretation(Annals vol. 156 no.5 340-349. Perhaps we're all above (or below) average.
I agree with Helen that many people will think their loved one is the one who has the long shot. Remember these family members are in shock and denial is a coping mechanism. Also, when the odds are really stacked against you, you don't risk much to go for it. This is true throughout life, not just at the end. This is why it is so important to have frank discussions about what the future could hold to prepare surrogates before the crisis hits to make those "in the moment" decisions.
This is a really nice article--it advances our understanding of how surrogates pricess prognostic information.
If I could offer one counterpoint to the article, I would disagree with the implication that this suggests a form of bias in the way surrogates process information. As noted by some of the surrogates in the study, these prognostic estimates are not precise. What is wrong with a family member deciding to act on the possibility that their loved one will be the one to do better than expected? This is not a bias, it is a normal human reaction. I don't think it is necessarily a good thing to correct this tendency towards optimism.
Thanks, Alex, for sharing an important article. I agree that there is a time for allowing patients & families the defense of believing in the possibility of longer survival. But there also comes a time when, as I like to remind my colleagues, you just have to pull out the "D" word. "Your loved one is dying and I don't expect them to live more than a few months/weeks/days" is my standard phrase when it's time to be realistic. I find that it is almost always heard clearly and, most often, accepted.
Patients and surrogates often don't believe prognoses provided by physicians because they have heard anecdotally of instances in which the doctors were glaringly wrong, or because they know, as we do, that we often are wrong. We work with actuarial, not individualized, estimates of survival. Doctors worry about the gratuitous suffering and wasted healthcare dollars involved in inappropriately aggressive care. Patients and surrogates worry about giving up too soon, abandoning their loved one. The situation is complex. Understanding the complexity,the multiple perspectives involved, rather than trying to declare one perspective the true one, is what will help all involved navigate these situations most skillfully. The article is a contribution to that understanding.
Gregg Manoff, MD
San Diego Hospice
Is it a "bias" or a distorted cultural learning?
I hypothesize that people who lived in a time prior to the technologicalizaiton of medicine and the institutionalization of dying had much more realistic expectations.
I wonder what this study would have looked like 100 years ago when many people had been forced to confront the reality of death and dying much earlier in their lives. Many experienced the loss of a child sibling due to a respiratory or GI illness. Many had witnessed the death of a parent or grandparent in their home. While the prior comment that "when the odds are really stacked against you, you don't risk much to go for it" is correct and based soundly in psychological theory (Kahnmen and Tversky), I still suspect expectations were more realistic.
I'm reminded of
this NEJM study as a powerful example of our culture's distorted perceptions of modern medicine.
I think a huge contribution of the field of palliative care is teaching how to deal with the affective responses to decision making...but I don't think that means you can ignore the cognitive. Sometimes it may be better in the long run to be a little bit more sad but also have a better understanding of the truth.
Thanks so much to all for the robust discussion of the research. I fully agree that hope is important to foster in patients with advanced disease and their families. I think there are ways to do this while still helping surrogates come to a place of acceptance of a very grim prognosis. Some of the differences in interpretation of the study findings amongst people who commented may have to do with context. I agree with Ken’s comments when the context is the outpatient setting with a patient with weeks or months to live. I’m less sanguine about that approach when a patient is intubated in an ICU with multiorgan failure and very likely to die imminently (which is the situation we were studying).
Because of the context in which we did the study ( patients who were at high risk of death in the coming days), there may also be an ethical imperative to help surrogates find different kinds of things to hope for rather than survival, both for the good of the patient being subjected to invasive procedures in an ICU, and for the family, who will likely soon be bereaved.
Doug White
I'm very glad for this article. As an Advanced Practice Nurse working in Inpatient Palliative Care, I've observed that family members often hold 2 opposing ideas in their heads (hearts?) - my loved may die; my loved one will be the one who survives/can't die. Which is why it can take a few days (weeks, months in cases where the patient is not imminently dying) for "reality" to set it. I think we all do a form of "reality testing", especially when faced with an emotionally traumatic reality. I've found it interesting to ask families what would tell them that the patient was not going to recover - what would that look like to them. I also frequently go over what tells a physician or nurse that a patient is not likely to survive to help with understanding each others world views.
There is a wonderful essay in JAMA (I think) called "Seventy-Two Hours" written by a palliative care physician who had to make decisions re: continued mech. ventilation for his wife who had end-stage scleroderma. He found it took him this amount of time to come to terms with the fact that his wife was dying and to decide that withdrawal of ventilation was the right thing to do in the circumstances.
It is true that some families will hang on until the last moment (or the third, fourth, etc arrest for a few) - but I find that most - with early mention of concerns for survival, frequent updates, truly listening and acknowledging the questions and concerns - will listen to their own inner voices/fears/beliefs as well as the physicians.
Donna Preble, RN, CNS
Totally agree. I am happy that at least somebody gave this subject an attention.Sample Statements
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