In this post I link to and excerpt from CoreIM‘s Prognosis from the January 1, 2020 podcast By: Dr. Jafar Al-Mondhiry, Dr. Tamar Schiff, Dr. Margot Hedlin and Dr. Alex Smith
Graphic: Dr. Michael Shen
Audio: Julia Skubisz
Here are links from the show notes that jump directly to each part of the podcast:
Here are excerpts from the show notes:
BODE Index for COPD (52mo mortality)
Chronic Kidney Disease (Stage IV or V)
Palliative Performance Index (Advanced Cancer, 3mo mortality)
Multiple Myeloma (5yr mortality)
Renal Cell Carcinoma (2 and 5yr mortality)
Seattle Heart Failure Model (1 and 5yr mortality)
Walter’s Prognostic Index (Inpatient Geriatrics, 1 yr mortality)
Margot: “But doc – how long do I have to live?”
Jafar: “How much time does my mom have?”
Tamar: “Should I think about moving in with my son?”
What is prognosis?
Smith: So prognosis is the likely outcome of a test or treatment or procedure. And when we talk about prognosis, we’re usually talking about prognosis for life expectancy, but prognosis can be so many more things than that. It’s a prognosis for expected positive outcomes as well as risks and harms. So, for example, prognosis for recovery of function following an ICU admission, prognosis for developing a negative reaction to a new immunotherapy drug for example. So prognosis is really sort of wide raging.
Margot: To give a quick disclaimer, the things that we find hardest are these conversations about lifespan, so that’s what we’ll be focusing on today. We also wanted to say that most of the literature on prognosis comes from studying geriatric patients, patients in the ICU, or those with advanced cancer. But the broader concepts we’ll be focusing on are relevant for anyone who cares for patients with serious or life-limiting illness.
Why offer prognostication?
Tamar: We certainly can’t see into the future, but we can give an informed guess. And our informed guess can help our patients make an informed decision. The risks and benefits of so many interventions change with the patient’s prognosis, and not just in decisions about end-of-life care.
Smith: So for example, in general medicine, cancer screening is the area where prognosis is probably discussed the most. And when you have a cancer screening, again, just to remind listeners is designed to detect slow growing cancers. It takes about 10 years for you to benefit from being screened for a slow growing cancer. And if your life expectancy is less than 10 years, then you’re unlikely to benefit from the cancer screening, uh, in your lifetime. The other sort of side of the coin is about the harms of cancer screening. And those typically occur up front within the first few, either immediately, for example, with colonoscopy, the risk of colonic perforation, the burden of taking that go-lytely, which does not make you go lightly, it makes you heavily. And, um, you know, burden of false positives, you know, detection of cancers that wouldn’t hurt you in your lifetime.
Jafar: A national survey of nearly 900 older adults conducted in 2016 showed that most would like to talk about it [prognosis] if they had less than two years of expected life.
Tamar: And these are crucial questions because hearing about their prognosis really makes a difference in patients’ treatment preferences. One study found that patients who thought they had even just a 10% chance of dying within 6 months made significantly different choices than people who were more optimistic.
Jafar: And prognosis doesn’t just change the way people think about their medical care–it can shape their whole world.
Smith: Patients often want to know, not because it’s going to help them make these medical decisions, but because they want to plan for the social decisions they have to make in their lives, you know, like, should I move in with the grandkids if time is short? You know, are there financial affairs that I need to put in order? Do I need to make sure my will is in order? Should I, you know, think about taking that trip I’ve always wanted to take? So patients want to know because they want to make primarily social decisions.
Margot: So the flip side of the scenario that Dr. Smith is describing is that patients without an idea of prognosis can suffer the consequences. It can hurt patients and their families, who end up struggling with anxiety, undesired hospitalizations, and who may opt for aggressive treatments that just end up prolonging the dying process.
Why is prognostication hard?
Margot: The second problem is that we’re often working with incomplete information. Dr Smith shared a story of a patient he cared for, a gentleman who was elderly, pretty frail, who was hospitalized and found to have a metastatic cancer of unknown origin. They didn’t have a tissue diagnosis at the time of the family meeting, and the son asked the question on everyone’s mind: how long did the patient have to live?
Smith: So this was, you know, a challenge, and most oncologists might just defer prognostication entirely because they’re so used to prognosticating based on the disease itself. You know, in trials of people with X condition, this is what happens. We didn’t know that. But in his case, because of his advanced state of disability, because of his advanced age, because he had other chronic conditions, we were able to estimate for him that he likely had a prognosis on the order of weeks, and maybe a few months, but months on one hand. And that was helpful information to the patient and to his son as they went about planning for their financial future.
Tamar: And while this was a win for this patient without a known diagnosis, even when we do know what disease a patient has, that alone does not give us the whole answer to prognostication. Often specialists look to disease-specific clinical trials to guide prognosis, but this data usually comes from younger, healthier patients than the individual patient sitting across from me, now. This data can also be outdated as improved treatments become standard of practice and supportive care has improved.
Smith: This will likely resonate with many of your clinicians, when they get an estimate of prognosis from an oncologist. Often we’re like, huh, that doesn’t really sit with what I’m seeing, you know? And that’s because the oncologists — if they’re relying exclusively on that prognostic disease-specific index — are likely overestimating the patient’s prognosis because they’re not seeing the complete patient. You know, the patient has dementia, that patient is in bed most of the time and eating very little. Those factors are not well captured in these studies that go into these, you know, single disease, prognostic indices.
How should we approach uncertainty?
Tamar: So all these tools make it easier to estimate lifespan, but this still leaves an elephant in the room that we felt should be addressed here, and that’s the fact that there will always be uncertainty in predicting prognosis.
Smith: I guess the first lesson where we’re talking about uncertainty is don’t hide behind uncertainty, don’t use the uncertainty as either an excuse not to discuss prognosis, because it’s uncomfortable for you, it’s emotional, et cetera. And don’t use it at the uncertainty as an excuse to give them a wildly optimistic prognosis.